Job's Apprentice

Preview

noreply@blogger.com (~plaid) — Mon, 30 Nov 2009 01:39:00 +0000

Here's just a little peek at our entry for Bridget's tree. Tomorrow is decorating day. We just loaded the crib, cabinet, bedding, and so much of all the other items we are including with our entry. The once fabulous display is down to the tree, a small table that the tree will be displayed on, and a few other small items.

In the morning, we will load all the rest of these things, and go to set it all up for the final presentation. Opening night is by invitation only, although you can purchase an invitation for cheaper than going to a movie. Opening night is when the bidding will occur. The rest of the week will be for the public to come and enjoy all entries.

We hope you'll come to support the Festival of Trees, and to see the entry we have been working so hard on for Bridget.

Crib

noreply@blogger.com (~plaid) — Sun, 15 Nov 2009 02:18:00 +0000

Will the unicorn be willing to serve thee, or abide by thy crib?
~Job 39:9

Bridget's first Christmas gift was going to be a crib bedding set. She was our seventh child, and I had never purchased a bedding set before. I always thought they were beautiful, although not practical enough for me to feel I could spend the money for. I was shopping for her one day in the baby department. I noticed a pretty little quilt with an "As Is" price tag attached. It was a four piece bedding set that was missing the paper insert that described the contents of the bag, but all four pieces were there. It had been marked down to 85% off the original price! I could find nothing wrong with the bedding set at all, and I was so happy think I would finally be able to decorate the crib for my little girl.

We were at IKEA looking at beds to buy for Christmas when she had her crisis event. We weren't sure which bed we would buy, but we needed another bed now that we had another person in our family. We had already looked through the catalog and had some ideas, and we were there to see what things looked like in person. We didn't get to bring a bed home with us, and we never were able to bring Bridget home with us again, either.

When Dominic had his crisis event, the crib we have was still standing against the wall unassembled. We had just moved into our home a couple months before, and were still making adjustments. Dominic was still small, still struggling to grow and needed to be fed many times at night, and so he was still sleeping in the bassinet in our room. We planned to set the crib up and move him in with his brother once we got him growing well.

We really were excited to be setting things up for our family, and were thinking long-term with the furniture purchases we were making. We bought a nice bunk bed set for the boys room, and once Dominic grew too big for the crib, he would graduate to the bottom bunk. A few weeks before that first Saturday, September 8th, the rail on the lower bunk broke. It was a manufacturer defect, and the furniture store had already sent in the order for the replacement. That day we left with the crib still against the wall, the bed still not replaced -- but Dominic would never need either.

I have really struggled too much these past few months. Too much going through my thoughts, and I feel powerless. Lacking even the confidence to write. I've been struggling to find a way to make life meaningful again. Trying to find ways to cope with the heartache, the grief, the pain, the worry and anxiety, the uncertainty, the everything there are not even words for. Trying to SAY something has been inadequate. I wanted so much to DO something, in hopes it would help.

In 2002, the youth group in our congregation worked through the months to create a beautiful entry in memory of Dominic for the Festival of Trees. It was a very touching tribute to him. It was a special way we were able to share our son with the world, even though his life had been so brief.

With all the items I had purchased for Bridget still in boxes, unused I kept thinking of how much I had wanted to use those things for her. That bedding set in particular was constantly on my mind. And the crib that Dominic and Bridget were never able to use.

Christmas comes again every year. It is such a wonderful time of togetherness for so many, and yet such a very difficult reminder of the separation for us. We never had a first Christmas with Dominic or with Bridget. I thought back to the past two Christmases. How have we gotten through? I read through our Christmas letters and I decided I was really going to DO what I have been thinking of doing for some time.

Because of the very first Christmas, there is hope. His mother had no beautiful and decorated crib for Him to sleep in either. And because of the babe of Bethlehem, whose bed was but a mere manger, there is hope. Hope that we will someday truly be able to celebrate Christmas, and every special occasion, and every miracle in every day, as a whole family again. That we will hold our little Dominic and our little Bridget again, and be able to fully receive the gifts that our Saviour brought to the world through His birth, His life, and His triumph over sin and death.

We are working on an entry in memory of Bridget for the Festival of Trees. So many things are coming together. After Bridget died, IKEA called us a couple of times to check on us and ask if we had anything at all that they could do for our family. Their question was sincere. As I proceeded with this project, their sincerity kept coming into my mind. I finally decided to call them. I had something they could do to help. It was a hard call to make, because the last time I asked for help at IKEA was when I was asking for someone to help me save my baby. All those feelings came back all over again. How grateful, just completely grateful I was for the most tender and sincere reply back. I asked if they could donate a crib for our entry. A bed that I could display the beautiful set that I had bought for Bridget in. IKEA graciously donated not only a crib and crib mattress, but also a cabinet and a changing table attachment!

With mixed feelings, I assembled the crib. I put the mattress inside. It sat that way for a few days. Then I had a few ladies over who I have asked to help me with decorating. They had been working on bed pillows. I hadn't known they were going to make those, although I knew they were working on a tree skirt for our entry, and a matching baby quilt. I was surprised with all the work that had gone into it.

After they left, I took out the bedding that was to be Bridget's first Christmas gift. I put it in the crib. I put the pillows that had been made in the crib. I was sad to look at this beautiful arrangement, thinking of Bridget and wanting to have needed this for her. And then in my thoughts, I knew that it would still be for Bridget this way. It would just be a different way. And though it is hard, I am glad we are able to do this for Bridget.

We are still finishing up on this project. With less than three weeks to go, there is still so much left to do. I have added a donation link at the top of my blog if any one out there feels they want to contribute to this project. We are going to be donating all of those things that I have for Bridget that she was never able to use -- the bedding set, the matching mobile and extra matching sheet that we had bought, a soft coordinating blanket, a whole lot of layette items, baby toys, etc. The theme for our tree will be "First Christmas," in honor of the first Christmas when our Savior was born. The tree will be decorated as if it is sitting in the nursery of a little baby girl for her own very first Christmas. I am trying to make it everything I would have wanted it to be for Bridget had she been here with us two years ago.

"...there's no question in my mind that life goes on. The whole essence of the Christian religion is based on the atonement of Christ, his death and his resurrection. There would be no Christmas if there was no Easter. The fact that he was resurrected gave credibility to his whole life's mission, and that's the essence of it. We go on living. This is a stage in our eternal journey. We lived before we were here. This is our mortal existence, and we shall go on living after this." ~Gordon B. Hinckley

Invitation

noreply@blogger.com (~plaid) — Thu, 15 Oct 2009 17:19:00 +0000

Pregnancy & Infant Loss (PAIL) Remembrance Day is commemorated each year on October 15th. We have buried Dominic and Bridget in infancy. We have experienced multiple miscarriages as well. We know of many other infants who died shortly before or after birth, or in their first year. We also know of many who have experienced a miscarriage or multiple miscarriages.

We remember Dominic and Bridget by lighting a candle for one hour beginning at 7 p.m. We also recognize all those who have also experience PAIL. Everyone who would like to acknowledge and honor the brief lives and hope for life of these children, born and unborn, is invited to participate.

We are asking everyone in all times zones, worldwide, to join us by lighting a candle tonight at 7 p.m. (October 15th, 2009).

For more information, please visit http://www.october15th.com

In Memory of Bridget Lucille

noreply@blogger.com (~plaid) — Tue, 15 Sep 2009 20:40:00 +0000

July 18, 2007, we welcomed our seventh child into our family. Bridget Lucille was five and a half weeks early, weighing in at five pounds even. I had been having pre-term labor symptoms for a couple of weeks before her delivery, so was able to get steroid shots to mature her lungs. I had an amniocentesis done the morning of her delivery to be sure that she would be as ready as could be for her early arrival. When we she was born having trouble breathing, we were very surprised.

The NICU was a terrible experience. It seemed everything went wrong. They put her on CPAP for what they thought was respiratory distress syndrome due to prematurity. When she was getting worse and not better, they finally realized on the xray that Bridget in fact had a pneumothorax, on the same side that her collarbone had broken. CPAP was forcing pressure into her punctured lung, making it harder for her to breathe, and putting pressure in her chest cavity making it harder for her heart. They took her off the CPAP and just gave her a little extra oxygen for awhile, then let her be and the pneumothorax healed on its own.

The world of "protocol, policy, procedure" held us hostage. They thought Bridget's gestational age automatically meant she was not going to be able nurse. She had a great latch and a strong suck, though. After the nurse was able to see that, they gave into letting us keep her off the feeding tube. I warned that our children all have had newborn jaundice, and our last preemie had been very close to a transfusion due to billirubin levels, and to expect levels to go from moderate to high very quickly. Just as I'd warned, Bridget did indeed have jaundice. The NICU used intensive light therapy to help her, but neglected doctor's orders to have her on an IV. She became very weak and tired very quickly. Overnight she went from being like a term baby to acting more premature. That was the turning point for her. She started smiling repeatedly, which at the time we called "talking with angels," but neurologists who viewed the videos say it looked suspicious of seizure activity. She lost her strong suck. She slept so much.

We were nervous and happy to finally be able to bring her home ten days later. I didn't know if she was ready, but felt that the NICU was not giving her good care. The pediatrician was ready to let her come home with us. It was just so nice to finally have Bridget home with us.

I learned about kangaroo care and kept Bridget on my chest constantly. We hadn't bought a baby monitor, but my husband joked that we didn't need it because really, when did I put her down. He was right. I carried her everywhere. She just seemed so fragile and weak. I worried about how sleepy she was and how she seemed to have such a hard time nursing. I pumped milk to make sure my supply would be adequate for her. We gave her extra bottles with a little formula mixed in to give it extra calories.

She did okay at first, but the next time we took her in for a weight check she wasn't gaining weight. We talked about possibly doing a feeding tube, but decided to try a few more days. I learned about a nipple shield and started using that. She seemed to have an easier time with that, but still struggled. We took her back in and she had gained some weight. The doctor told me not to bring her in for another month unless I was worried, and then they could check her weight.

I honestly was worried all the time. Constantly. There was not one day I wasn't worried. I tried to tell myself that she was just premature and that just because Dominic died didn't mean she would. Besides, he died from botulism, and I knew the symptoms and was watching carefully. And the doctors all had told me that lightening doesn't strike twice. I took her in for a weight check and she actually was gaining okay. I tried to relax, but I just couldn't.

Bridget continued to have episodes of "talking with angels." They became a little more intense, and we started calling it her "trance state" because she seemed to be awake but not really aware of what was going on around her. Afterwards, she would just become so tired and lethargic. She was so floppy, like Dominic had been. I was very worried. Sometimes she would breathe so shallowly that I wasn't sure she was breathing at all. She would get mottled a lot, too. Things just didn't seem right. When she was floppy and tired, her jaw would fall back. She just seemed much more tired than I thought was okay.

I felt reassured because a home health nurse was coming out every couple of weeks. She would weigh her and evalute her development. She would always tell me that Bridget was doing great. She was tracking objects, holding her head up. She was always so alert and paying attention. She never saw her "trance episodes" or lethargic times. I thought maybe they really were more likely just silly quirks, maybe from being premature, and maybe since the nurse wasn't seeing problems that I was just being paranoid.

She would have times when she seemed to be doing fine. I would think that maybe I was exaggerating what I was seeing because of what we'd been through with Dominic. Maybe I was just being paranoid, like my husband thought. I just adored my baby girl and thought she was such a precious, beautiful child. I would really only put her down to take pictures, which thankfully I took many. I worked hard on the feeding to make sure it was successful. I wasn't going to let my baby starve! Sometimes I thought about how hard it had been to feed Dominic, and felt angry when I would feel overwhelmed with the difficulties. I would rather have her here and having a hard time with feeding than the alternative -- I already knew that too well.

We decided to go ahead and have Bridget blessed on the same day that her older sister would be baptized. It was the first of September. I had not liked the idea of doing it in September, thinking about how hard the month was for us with Dominic's crisis event and death being in that month. I tried to tell myself it was just superstitious, and with it being labor day weekend it would give people more time to travel. We tried to make it convenient so more people could join us for the special occasion. Our daughter was baptized and confirmed. Then we went to the bathroom to change Bridget into her blessing dress. For a brief moment, I thought she'd stopped breathing. She was completely limp, and unresponsive, and she seemed to be so pale. But her lips weren't turning blue and I told myself to snap out of it and not scare my older daughter. I did say quietly, "Bridget, are you okay!?" and then she seemed to stir a little. She was still pretty lethargic. I took her back to be blessed, and didn't hear much of what was said because I kept worrying that maybe she was getting dehydrated. It had only been two hours since she nursed, but I was just so worried.

I took her home and nursed her. We had company over and I expressed some of my concerns. Others agreed that there did appear to be some things that could be brought up the next time I saw the doctor. It was going to be in less than a week, so I figured I could be patient. I took her to church for her first time the next day. I stood and bore testimony, and was emotionally overcome. I thought it was because it was exactly six years before that I had held Dominic in my arms and bore testimony, only to have him stop breathing six days later. I took her home after sacrament meeting. We went to Temple Square in the afternoon. She really seemed to have a harder time when it was warmer. She was very tired and lethargic again. I was trying so hard to get her to wake up to nurse. I tried so many things, even putting cold water on her face. She just was too tired. I had my sisters try to help me get her awake enough. They pulled off her socks, pinched at her feet. Eventually she did wake up enough to nurse. But it seemed it took so much for her to do such a simple thing.

Labor day Bridget seemed to have a good span where things seemed to be going pretty well. We even took this picture:

I actually took a lot of pictures that day, but this is probably the one we will use on her headstone. Really, you shouldn't have to use a picture of your child as an infant on a headstone. You really shouldn't have to be choosing a headstone for your child at all.

That Friday, September 7th we took her to the pediatrician. I had a list of concerns. Her weight had increased, up to five pounds fourteen ounces. The home health nurse had weighed her the day before at six pounds even. I was worried about her weight, and the lethargic and floppy times and how tired she was and so many things. The doctor did say her weight was a slow gain, but that it was still acceptable. He'd like to see her gain a little better if we could, but he wasn't worried. He took time to hear my concerns, and over and over again just tried to reassure me that things were fine. He commented about how he understood with the anniversary of Dominic's crisis event and death so close that I might be more sensitive, but he just didn't think things were so bad. He chided about ordering a monitor for her, but that he didn't think it was medically necessary and that it would just be for reassurance.

This is what Bridget looked like that afternoon that he saw her, and I don't know how he didn't see something to worry about:
I actually had hoped that he really did order the monitor, but home health never came with it that night. He had told me to let her sleep longer at night instead of waking her to feed her. I did that, although I did actually try to wake her up a little anyway because I was just too worried. In the morning, I got online and I ordered an angel care monitor from Amazon. I was just too nervous. It was SATURDAY, SEPTEMBER 8TH! I knew that it was irrational to be so worried. The doctor had just told me everything was fine, but I was so nervous. I talked with my mom on the phone, and Bridget cooed a little. Shortly after that, she gave me a big half grin. It was the first time I really believed she smiled at me interactively. She had smiled many times before, and even laughed, but it often seemed to be in her "trance state" or just at random times. I am grateful both Bridget and Dominic smiled for me the day they had their crisis events.

We left for IKEA. We got there and as I took her in, I was angry at a man for smoking in the family parking area. Didn't he think he should have a little more respect for children? I put Bridget in the sling and started nursing her. She had only eaten a couple of hours before, but I was trying to make sure she got as much as she needed. When we got inside the store, a cute lady who worked there saw the sling and came to admire our baby. She saw I was nursing, and then showed me a nursing lounge. I actually had just seen it because I had gone to the bathroom. I had thought it seemed kind of unsanitary to put the nursing lounge right there. And I had noticed a big emergency button on the wall and thought it was unusual. I pretended to think the nursing lounge was a good idea so I wouldn't offend this sweet lady, and then when she left, I continued on into the store to look around.

We had planned on buying beds for Christmas. I'd bought bedding for Bridget, and we needed another bed now that we had a new family member. We were amazed at all the sights in the store. Bridget stopped nursing, so I asked my husband if I should leave my breast exposed in case she woke up and wanted to nurse more, or cover up. Without waiting for an answer, I figured I was covered enough by the sling and that if she would eat more, she needed it. We continued walking around.

Then I checked on her again. Bridget just didn't seem right. I asked my husband if he thought she looked okay. I did this a lot, because I was always so worried about her. He immediately said he didn't think so, and I went into shock at that moment. I asked him to help get her out of the sling, and I don't even remember much after this. I remember wandering, trying to cover up and asking for help. "We need help!" I was trying to decide if I was imagining things or if Bridget was really not breathing. I kept thinking I was making a scene over nothing, embarrassing ourselves because I was somehow confused about Dominic on SATURDAY, SEPTEMBER 8TH. But then I would go to reach the phone and see my husband doing compressions on my baby girl. Something was wrong, right? "We need help!" I saw a man look at me like, "lady, ask someone who works here. If you want to buy a couch or something, they can help you." He didn't say anything, but I thought maybe he was right. Maybe I shouldn't be bothering the customers. Nothing was really wrong, right? Bridget, are you okay? You're okay, right Bridget? Please, Bridget! Be okay! It's okay, right? It's okay!

I just couldn't believe it. I felt like passing out. I couldn't believe it. Someone came and said they knew CPR and started to help and someone called 911 and I kept thinking I was dreaming. It couldn't be real, I don't know how this could be real. Bridget has to be okay. I was thinking that it wasn't the same. I was nursing on the other side. But then I guess I realized I was wrong. Dominic had been nursing on that same side! But it wasn't real. I was imagining it. ESPECIALLY because it was all the same again, I must have fallen asleep on these mattresses in this store and I'm having this terrible dream about Bridget because my mind is still working on processing it all with Dominic. I had had a feeling earlier that morning that I felt was a spiritual impression, though. That she was going to be a special needs child. So I kept telling myself that if it was real that she might have some brain damage, but she was going to be okay. This time I knew CPR wasn't going to work, defibrillators weren't going to work. She needed the medicine. I don't remember too much. There was a policeman and he wouldn't let me be by Bridget, and I didn't understand why. I thought it was okay. They took her to the ambulance, and let me go in the ambulance. They told me some of her stats and I don't remember what they were, but she had a heart rate and I knew it was too low but I was glad she had one. I knew she couldn't breathe by herself, but I decided she was going to be okay now that she had a heartbeat.

We drove to the corner of IKEA in the ambulance. There was a life flight helicopter there. I don't know if any of them helped Dominic. I found out one of them is named Kris. I saw her at the fire station open house and then at the NICU reunion. So now I know she helped take care of Bridget. She let me give her a kiss, but I couldn't go in the helicopter with her. They flew her to the Children's hospital, and then the fire men took us in their fire truck to the hospital. One of the fire men drove our van there for us. He said we were in no condition to drive.

We got to the hospital quickly. The second half of our ride up they ran their lights and sirens, so we could get through game traffic. I guess it must have been a home game at the University that day. But when we got there, we had to wait. And the social worker would come and sit with us and tell us over and over that she was very sick, and I knew they were trying to tell me she was going to die, but I didn't believe it because I knew she was going to be a special needs child. She was going to be okay.

I hated the day that the donor team came to talk to us about organ donation. It was a big misunderstanding. I was yelling at them that they were talking as if Bridget had already died, and then they told me technically she had. I was so angry! The doctor came in and we fought and fought. I was so upset. She was sorry for the way things were explained, because there are different definitions for death, and for organ donation you don't actually die in the way I think of death before they take your organs to give to someone else. It was such a horrible thing to think about. And Bridget wasn't even a candidate for organ donation because of the unknAnd then it was also when I was made very aware that Bridget was too sick. Too much time without oxygen. The only thing keeping her here was machines and medicines. A lot of medicines. And she was still getting sicker anyway.

We still were able to have more tests done to hopefully give us answers. A skin biopsy. A muscle biopsy. The same doctors that had been so sure that Dominic died from botulism were now saying that he died with botulism, but not from botulism. That Bridget and Dominic likely both shared the same underlying genetic problem. Maybe a metabolic problem or mitochondrial disease. Because it affected both a girl and a boy, it would be autosomal recessive. But they didn't have any answers for us.

Bridget died in our arms on the morning of Saturday, September 15, 2007. She didn't even try to take a single breath on her own when they took the machines away. She died very peacefully, but my heart was so shattered. Literally, my mind broke in that hospital, too. A part of me just broke away and stayed at the bedside with Bridget. She is still there, waiting for Bridget to wake up. She has to be okay. Please, Bridget, please! PLEASE! Bridget, don't die!

In Memory of Dominic Angelo

noreply@blogger.com (~plaid) — Mon, 14 Sep 2009 17:31:00 +0000

Our fourth child was born 16 April 2001. He was three weeks early, but seemed to be healthy, weighing in at 6 lbs even. We were in the process of having our first home built, my husband had graduated from the University and we were planning to leave behind student housing and start living in the "real world."

When Dominic was about five weeks old, I noticed some orangish spots in his diaper. It worried me, and I called the pediatrician. The nurse told me it was just urinary crystals and common, so nothing to be concerned about. A few days later I just didn't feel things were right. He seemed too tired and too small. They told me I could bring him in and they'd weigh him for me just to reassure me. When we got there, they put him on the scale and he had only gained a few ounces over his birth weight. They asked me if I could stay and meet with a doctor. Of course!

We were told to start giving him some formula in addition to nursing. We'd do weight checks every few days and see how he did.

We moved into our new home. Developmentally Dominic was progressing, although a little slowly. The doctor we saw before we moved was pretty concerned and made sure we were already connected with a good doctor where we were moving. He made me more nervous that he was that concerned because he has always been pretty laid back, even when I was worried.

The doctor in our new town was pleased with the slow progress Dominic making. He felt it was still within the range of normal, although he was still not happy with his weight gain. He had his nurse, a certified lactation consultant, watch me nurse to make sure latch was going well, etc. They told me to use fenugreek, brewer's yeast, pineapple juice, oatmeal, etc. They gave me formula samples, and told me to nurse and then pump every 1.5hrs day and night. Eventually we got a scale from home health to weigh him before and after feeding. He did have reflux, and the formula seemed to make it worse. We just kept trying to help him grow.

For whatever reason, we started using the nickname "Froggy." We lived our lives as if there was nothing really wrong. We went to the zoo, the waterfalls in the moutains, and just loved and adored our little family. It was stressful focusing so much on feeding and not getting the results we thought we should be getting, but he was growing, and he was making progress developmentally.

I took my two year old for an evaluation at early intervention. She was having a hard time learning to talk. While we were there, the team of therapists had their eye on Dominic. They asked me after the meeting if Dominic had been referred for early intervention. I explained that the doctor wasn't really worried except for his slow weight gain. They told me he really should be holding his head up better and that they felt he could benefit from some help in their program. They set up a home nurse appointment for him.

Dominic kept going in again and again for weight checks and follow-up appointments. We were getting exhausted. The doctor would always say he was doing pretty well, but if he wasn't gaining better the next time they would put him in the hospital to do a bunch of tests and see if they could find what was going on. And the next time would come and he would just say the same thing again even if he hadn't gained any weight.

Finally I was just too tired. I wanted to know how to help my son more than anything. He was such a sweet boy. He seemed to always be happy, and just was a very alert and interactive little boy. It broke my heart to see him so skinny, though I admit at times I thought it was so cute how little he was. I told the doctor that I was ready for him to send him to the hospital and do the tests. Suddenly the doctor back-peddled. He started telling me how it would be so invasive and with how small he was it would be really hard on him. That there were so many possibilities of what could be wrong they wouldn't even know where to start. So he suggested we take him to the out patient lab at the Children's hospital and do a couple of things: a sweat-chloride test to rule out Cystic Fibrosis (which all three of his older siblings had had done, so we figure his would be negative like theirs) and a basic blood panel. The CF test was negative, and the panel was mostly normal except one that was elevated relating to the liver that is not uncommon to see elevated in newborns. So the doctor was content to think there was just some mild delay of no significance.

Dominic actually seemed to be turning a corner. He seemed to be getting stronger, doing more, eating better, and even growing a little better. I took him for his 4mth check up and the doctor wrote on his note we brought home "A+" because he was doing so well. Of course we were still tracking his slow weight gain, but he really was so alert and interactive that the doctors felt confident he was just on the low end of the normal range.

The home health nurse from the early intervention came to our house. I pointed out how weird his ribs looked when he breathed. She thought it looked like some sort of anatomy thing where sometimes the ribs are formed a certain way. I don't remember the term now, but she told me to ask the doctor about it the next time he was seen. You can kind of see what I was seeing in this blurry picture of him, where the center of his chest would just suck down in:

The nurse thought he was looking pretty good, too, but that because he was so small that he would likely qualify for services. She set up the "in take" appointment for September 14, 2001.

On Sunday, September 2nd we were at church and Dominic didn't seem to be doing as well. The meetings ended and on the way into the house he vomited all over. This was not just his normal spit up from reflux. He really vomited. I was worried especially because of his low weight. I took him into the on-call doctor. I mentioned the rib thing, and he told me he didn't think he had that. He said he thought he probably just had some viral thing and that we should give him some tylenol until he felt better. Dominic did NOT have a fever. The doctor told us to follow-up with our regular pediatrician in the morning.

So we took Dominic in on the morning of the 3rd. His regular doctor looked him over and thought he looked fine. He told us to come back on Thursday for another weight-check but figured he probably just had a pretty big spit up the day before. Dominic wasn't vomiting anymore so it made sense.

Now this whole week I was extra worried. I felt that I was going to die. I had been having headaches and just felt a sense of doom hovering over me. And so when on a couple of occasions it appeared to me that Dominic had stopped breathing, I thought I was really losing it when I would see that he was in fact breathing after all. I think the way his chest was caving in when he would breathe was actually a sign he was struggling to breathe. I also believe in hindsight he really was having episodes of apnea at that point, and I was just in denial. This happened at least three times.

We took Dominic in on Thursday. He weighed in at 9lbs. 4oz. Not very much for a nearly five month old who weighed 6lbs at birth. But it was still progress for him. The doctor didn't see any reason to do anything different, so it was just the same old same old of bring him back in for more weight checks, etc.

My husband's company had free tickets to an amusement park. We'd let our family know and they all decided to go on the same day. My mom and step-dad were flying in from out of town, and even my step-sister was here with her daughter from out of town. We had been trying to get our sprinklers done, and since all the family would be in town, we asked for help. We ordered a bunch of pizza based on everyone's response and expected to get them done the night before the big amusement park trip. NO ONE SHOWED UP until it was too dark to do anything, but they helped themselves to the pizza anyway. I was so angry! Here we had helped my sister lay sod while I was still bleeding from delivering Dominic, and this was how they respond? We were exhausted trying to help Dominic, and they just didn't even care.

So the next morning SATURDAY, SEPTEMBER 8th, when everyone was planning on leaving for the amusement park, we stayed home and worked on sprinklers. I didn't want to leave until we had them to a point we couldn't work on them anymore. My family was annoyed that we were ruining their plans of everyone going together. So my mom decided she'd come over and watch Dominic for us, and my brother-in-law did come help a little, too. We didn't leave until early in the afternoon. My mom took a few pictures of Dominic with her digital camera before we left. here is the one we used on his headstone:

In hindsight, I resent my mom for taking all kinds of video of her step-grandchild who lives in the same state as her but NONE of Dominic. Call me cold or bitter, but it hurts that she is still alive and that Dominic died and I have NO video of his smiling, sweet face. We took some video of him while he was on life support and dying, but it just isn't the same Dominic that we got to know in his brief life. But I AM forever grateful for these pictures we got of him.

Within hours of that image being captured , it was all different. I was nursing him on a bench in front of the bumper cars. I had already fed him on the one side. I had him covered with a blanket for modesty. My sister was sitting next to me. She had just announced that she was pregnant (the reason she didn't help with sprinklers). So I was asking her whether she thought it would be a boy or girl. She wasn't sure so I told her I bet it's a boy and then Dominic will have a boy cousin close in age, and how cool that would be. I noticed Dominic had dozed off again (not unusual). So I pulled my bra back together under the blanket, tugged my shirt down, took the blanket off. Dominic began to roll down my arm, which is what he'd do, and then he would startle awake. But this time, he didn't startle at all. He just fell limply. His arms fell down and the weight of them falling kind of jerked him. I instantly said "something's wrong with Dominic" while turning to my sister to hand him to her while I called 911. I was in shock, so please don't comment about how I should have never handed him off.

I watched his pale face and noticed his lips were starting to turn blue. My sister handed him to another sister who started mouth to mouth, and the first sister ran to the first aid station. This was just around the corner from the bumper cars. And EMT (I thought it was just a security guard for the longest time) came and took him from my sister and RAN to the first aid station. I followed, running and watching Dominic's limp arms and legs flopping up and down as he ran. They got him to the first aid station and started CPR. They used the defibrillator over and over and the paramedics were on their way. Dominic was still unresponsive... Not breathing, no pulse. Finally the ambulance arrives and they put him in there. They get some medicine in him. They have to drill into his bones in his legs. They let me ride in the front of the ambulance. And then I felt it. And just as I felt that sweet warm feeling run through me, the paramedic told me, "mom, we have a pulse! It's a faint one, but we have a pulse!" I knew Dominic was back. And I had to hope he was going to stay.

They drove to the nearest hospital then life-flighted him to the Children's hospital. The doctors were sure there was a metabolic problem. They even thought they'd pinpointed it to "Barth's Syndrome." They were doing all kinds of genetic testing, and taking DNA from all the family even for a study. Then airplanes were crashing into buildings. The samples spoiled on Fed Ex trucks that couldn't do anything because all the planes were grounded. They did a skin biopsy, then a muscle biopsy. Then they realized that the muscle looked like he had botulism. We hoped and hoped he would get better, but time showed he had been without oxygen too long. They did do a stool sample before he died and blood test which confirmed he did have infant botulism.

On Friday, September 14th, 2001 Dominic died in our arms. It was the national day of mourning. There is so much more to the story but I've already rambled on and on. Our little boy should be eight years old. All the intensive testing and autopsy revealed nothing more than botulism. It was put as his cause of death on his death certificate. We went and met with the genetics doctor to make sure that there wasn't something to be concerned about with our living children, or any future children, and we were reassured it was just a fluke thing. Tomorrow we'll live through another anniversary of our child's death. This time it was Dominic's little sister. She did not have botulism. For six years we believed Dominic died from infant botulism, but now it is all uncertain and unknown. Doctors believe he did die with botulism, as the evidence is clear that he did actually have it, but they do not believe he died from botulism.

I miss you, little froggy. I wish we could go back to before "real life." I can't describe in words how all these experiences have affected me and my family. Even eight years later. We are not over it and we still grieve. I have been so very weak and exhausted all these weeks. I appreciate those who have left comments and come to check the blog, and I'm sorry I just can't keep up with it. I'm just so emotionally drained. It takes so much to post. I am mostly just copy and pasting this from the angel blog I belong to. I want to share my little son with the world, and this is the only way I can now.

Weak

noreply@blogger.com (~plaid) — Thu, 13 Aug 2009 14:45:00 +0000

Bridget's 2nd birthday came and went without any notice to the rest of the world. No one called or stopped by to let us know they were thinking of her, or of us. I am grateful to those of you who thought of her in a small act of kindness towards others -- thank you! It was those of you doing those little things that I held close-- to think that at least in someway, she was remembered by this world she spent so little time in.

-----

Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
Trust ye in the Lord for ever: for in the Lord JEHOVAH is everlasting strength (Isaiah 26:3-4)

I honestly think that something broke when I was in the hospital with Sarai this last time. I don't know how to cope as well anymore. I feel so much more broken than ever. And I am searching for a "perfect peace." My days are difficult, and the night brings no relief as I toss and turn between nightmare after nightmare. Things so grotesque in my mind that I don't even want to recount them.

Words fill my mind, but I cannot grasp onto them. I don't know what to say at all. I want to say it all, but I have nothing at all to say. So I go through each day, going through the motions. Staying on top of things, but at the same time underneath it all. Suffocating.

We tried to go back to church. We went as a family. I was kind of looking forward to it, actually. On some level. But because I was too aware of how even going to that building had taken its toll on me-- with the swelling and hives and physical pain-- I was dreading it.

When we were there, it was like I was in a daze. As if I was present, but not present at all. Fragments of the past were swirled in with fragments of the present. But in no coherent way. It was very difficult. And just as it was time to go, I was caught up in emotion. So overwhelming, because the past became the present as I stood alongside the table. I was helping my husband put the lid on Bridget's casket again. And then I was sobbing. Sobbing because she is gone from my view for the rest of my life! Sobbing! And then the fragments of the present presented themselves. And his loving arms were not around me like they had been on that day.
I was confused. I wasn't sure where I was, or what was really happening. I felt like a very young child. I was still sobbing. I began to feel embarrassed as I realized that there were other people in the room, and that this wasn't all just happening in my mind. I was literally falling apart. Then someone's arms were around me. Someone was whispering something. Indiscernible. Like the words that fill my whole being that I can't get out. I don't know how long this went on. I hope it was only a few seconds. I went back and forth into then and now and then and now. At some point, my husband and children came into the room. I was more aware now, that it was not the day we buried Bridget. And somehow I was able to stay present enough to leave.

I wish I could describe things better. I have no confidence. My strength absent. And I feel somewhat mocked by the simplicity of words I read in the scriptures when all the effort I can muster does not result in peace or strength or comfort or any of those things that would make it all better. And it makes me feel even more that I cannot gain favour with God.

I wish I could make it all better for myself, but I also yearn for other mommies who are learning to live without their child to have relief. To have something to get them through. Today, I went to the angel mommies blog that I belong to. And one of the other mommies shared the comment I had posted on her blog. I had actually been reluctant to post the comment, because I didn't know if I had been able to say what it was my heart was trying to convey to her. I didn't want it to seem I was being condescending or knew something that she didn't already know or... I lack the confidence to know what to say anymore. But I was so grateful to see that she had found the comment to be of use:

I think when our children die, and they progress into the eternities, there is TRULY a piece of us that goes with them. As their mommies, it makes time seem very dysfunctional as more of us than before is a part of a realm where there is no time. And yet, our mortal beings are captive to time. It is a sort of bondage, but in some ways it is voluntary. So we ache. We literally, physically ache as time passes and we cannot reach out and touch our little ones any longer. I think that if people could understand this better, they could understand how losing a child is very different than other losses they may be more familiar with (like a dear grandparent, for example). Grief has similar overlaps in all loss cycles, but there is an element of losing a child that is not a part of any other kind of loss cycle.

I'm sorry that Gavin is 366 days behind us. :( And yet I am also comforted that he is in the eternity around us! If only we could FULLY pierce through time, and sense the eternities in WHOLE, we would see that without time, there is no past or future or present. That our little ones have never left us. It really is only time that separates us. Mortal time. Sigh... and everyone thinks it helps to tell us that TIME heals. What an unfortunate misunderstanding. Time standing in the way...

I hope you have caught your breath today. Perhaps, I think, for the rest of our lives, we will have moments like that. Of missing. Missing so intensely and so deeply and... I wish I had something of comfort more to say. I have this terrible habit of rambling incoherently, so know I meant well.

I wish sometimes to collapse into that hole in the fabric of time. I want to collapse into it, and yet I feel such a tug in time to be here for the family that is here.

September is fast approaching. Already the air is beginning to change as the seasons prepare to turn over. The sun is shifting into another path in the sky. It will be eight years since I held Dominic in my arms. Two years since holding Bridget. And it is still not enough time to heal. But then, I don't expect time to heal. As I wrote on my blog years ago, even before Bridget was a part of our family, when my heart was only heavy with the grief of one child's death:

There are so many euphemisms. Sometimes I begin to believe that time will heal. That life goes on. There is some comfort and some truth in these words at times.

...Intensity weakens. That is true. Time is what robbed me, and it has never healed me. Softening comes with recognition that expectations won't be met. That time is only a lower law, preparatory, that will be swallowed up in eternity. Father Time has his seasons, but The Father is endless.

Bridget's 2nd Birthday

noreply@blogger.com (~plaid) — Sat, 18 Jul 2009 13:02:00 +0000

Two years ago...
Bridget Lucille was born. Just didn't imagine she wouldn't be here right now. :( We have a few things planned today. We will go as a family to the Oquirrh Mountain Temple Open House.

We took Bridget to Temple Square six days before her crisis event. We went back the day she died, just as we had done the day Dominic died.

"...to the Latter-day Saints a temple is more than chapel, church, tabernacle, or cathedral; it is no place of common assembly even for purposes of congregational worship, but an eedifice sacred to the ordinances of the Holy Priesthood--distinctively and essentially a House of the Lord." (Jamses E. Talmage, "Jesus the Christ", p. 717-18)

Just as some of life's sweetest joys can come through family associations, the loss of a beloved family member can be a source of our deepest sorrows. But death does not need to be the end of our relationships with cherished loved ones. The Lord revealed... that the "same sociality which exists among us here will exist among us there [in eternity], only it will be coupled with eternal glory." (Doctrine & Covenants 130:2)

It's just the waiting through time to get to the eternities... :( I really miss you, my beautiful bright-eyes Bridget!

Happy Birthday, Bridget!

Small

noreply@blogger.com (~plaid) — Tue, 14 Jul 2009 14:29:00 +0000

...simple acts of service can help us and those we are permitted to influence. Our Heavenly Father places loving individuals on important crossroads to help us so that we are not left alone to grope in the dark. ...Serving others need not come from spectacular events. Often it is the simple daily act that gives comfort, uplifts, encourages, sustains, and brings a smile to others. (Michael J. Teh, “Out of Small Things,” Ensign, Nov 2007, 35–37)

Bridget's birthday is on Saturday- she would have been turning two. I have a hard time with what was supposed to be a celebration of life being a reminder that she is not here. But I want to do something for her. She was just so small, and some may not think that she had much influence. How could something so small be important? Just after she died, a Conference address was given called "Out of Small Things," quoted above.

The words spoken then have been in my mind frequently since that time. I wonder how many of you would be willing to give her a gift. This week, find some small way to show service to someone IN your life. Do something WITH someone who needs you. Find someone in your day-to-day associations WITH each other. Please, no big fanfare! Think of Bridget, how very SMALL she was. Make your acts small, yet profound-just like she was! Then come back and let me know how you gave "Out of Small Things."

If you'd rather keep your service private, that is fine, too. Just DO something. And if you would, please remember Bridget when you do it. This is just meant as way to share how Bridget influenced you and give her a special kind of gift for her birthday. I really do understand if you might want to keep your acts private, so while I'd love to hear about your experience, the main thing is to just do some small thing-- which will have a much greater influence than you might ever know.

Back

noreply@blogger.com (~plaid) — Thu, 09 Jul 2009 19:29:00 +0000

It is difficult. My mind goes back over things. My mind tries to find answers to make sense of things. My mind tries to have confidence that we'll somehow be able to get through all those things yet to come. And my mind wonders just what those things are. So much races back and forth through my mind as I struggle to just endure.

Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy.
~James 5: 11

But I find it so difficult without answers. My heart has been so heavy with grief. I miss my little ones terribly. I've thought especially about Bridget with her birthday coming up, and thinking back to the weeks before her birth and how uncertain things were then. But I just never really expected that she wouldn't be here. And the grief is so heavy, but not knowing why she died. Not knowing why Dominic died. It just leaves too much open. Too many questions, and wondering since we can't bring them back, how do we go forward so that the rest of us can be okay?

"Waiting is worse than knowing. Grief rends the heart cleanly, that it may begin to heal; waiting shreds the spirit."
~Morgan Llywelyn

Two weeks ago we were in the hospital with our youngest getting a feeding tube. After more than a month of being sick, she is finally seeming to kick the illness. We continue to have low heart rates alarms at night, and she is still not back to eating like she did before. She is still getting feedings through the tube at night. We have orders for a few more specialists to follow-up with, and it still seems quite unsettled here.

Two years ago I was going to the hospital for non-stress tests on the baby I was carrying. I wasn't due for more than a month, but the way things looked I wouldn't be carrying the baby much longer. My body just seemed so unsettled. July 18th is the day she was born.

Yesterday's date had me thinking about her crisis event, and how everything was so very unsettled. 07-08-09 ... 09-08-07. Going forward, going back, going forward, going back... The questions came back to my mind. Would she pull through? Was that feeling I'd had earlier in the morning, that very deep impression been to reassure me that she would indeed live, yet would not be whole again? September 15th is the day she died.

It is odd how these reminders come. I can be going forward, and then, unexpectedly, there are those things that make me go back in time. Like I'm there in that moment again. Back and forth. Going forward, going back.

Our city just opened a new fire station that will serve our neighborhood. They had an open house, and the kids seemed interested. I was reluctant to go. I have a hard time still seeing fire trucks and ambulances. The fire truck had driven us to the hospital after Bridget was flown there, as they pointed out, we were "in no shape to drive." I was so grateful for those heroes, but it was just so hard to have the triggers. Like it's been so hard to have the triggers every time I nurse Sarai. And yet, here I am, more than a year out and I've been able to make it this far. It's been a real struggle though. And I argued with myself back and forth, forward and back, about whether it would be okay to take the kids over to the fire station.

I decided to face it. I would have the advantage of being prepared in advance. I would not be caught off guard. We drove over. There were two ambulances parked on the side of the road. Two, like two of my children who had died. I saw a yellow firetruck in front of them. The fire truck we rode in had been red. Then I noticed the fire station itself. Parked in front was a red truck, and they had all the fire fighters posed in front of it for a picture. We waited for the photographers to be finished, then went inside. We noticed the hose they had cut for the "hose cutting" ceremony. And then I saw two women wearing life flight uniforms. I went back. Back in time. I was there in the parking lot at IKEA. I saw my little girl on a gurney, and they were putting a big soft blanket on her. "That blanket looks so soft. I didn't think they had blankets like that for helicopters. That is so nice of them to have soft blankets for Bridget. I think they'll take good care of her. I wish I could go with her. I hope she is going to be okay. She's going to be okay! It's okay! It's OKAY!!! It's NOT OKAY!!!!"

Flashback. I was there, but I'm really here. HERE. Back and forth, forward and back. Back and forward. I looked at her again, and this time I stayed in the present. I wasn't sure if she was really the doctor, or if her uniform had just triggered the flashback. I wasn't sure if I should talk to her. She seemed to catch my eye, and I wanted her to know if she had taken care of Bridget that I was so grateful. I asked her how long she'd been working on life flight. She said it's been nearly twenty years. I told her we'd had a baby life flighted, and I wonder if she had been there. I just said she was flown from IKEA. That was all she needed. She quickly said, "YES! Oh, how are you guys doing?" She was genuinely concerned, and stood and gave me a hug. She saw Sarai and commented about us having another one. I asked for her name, though I wasn't sure I'd remember. Chris. Chris was the life flight doctor who cared for Bridget, along with her team.

As we walked away, we went toward the back where the cakes were. Then I saw it. The life flight helicopter. How was I caught off guard again? If there were life flight people there, why not the helicopter. "Give her a kiss, mom!" Bridget, you have to be okay. I wish I could come with you sweetie! Oh, please be okay. PLEASE!!

Back and forth. Forward, and back... back again in the present. Eventually the kids wanted to see the helicopter. I told them that Bridget likely rode in that helicopter, or one like it. I was surprised by the question, "why?" They weren't there when she had her crisis event. I guess no one told them that Bridget had been flown to the hospital in such critical condition. I answered quickly, "remember, when she stopped breathing? She had to go to the hospital and the helicopter came to take her there." They wanted to see the helicopter in person. They wanted to go inside. And I hesitated, but went forward.

It seemed so odd to watch my healthy children playing so happily inside this vehicle where my little ones had once been cared for when they lay unconscious, never to wake up in mortality again. So naive. And I wished, wished I could go back to being so naive.

I have had a lot of terrible dreams again lately. I had been having them still, but not so many in the intensity they've come these past couple of weeks. I've really struggled. I think about Bridget a lot. Her birthday is coming up, and these days are the days of the year she was born that we were so concerned and wondering how things would turn out, but never really expecting that we would have anything but a healthy baby to grow into a child and then adult in the years to come. Sure, there might be a few issues from a premature delivery, but they would likely be very minor. And they seemed to be. Until that day. That Saturday. That Saturday, September 8th. Just like Dominic.

I hate the feeding tube. It reminds me of being back in the hospital with Bridget. The frustrations of the NICU where they insisted that she should not breastfeed and simply because of protocol, they put a tube down her nose when I had insisted that they let her be. I was so angry. So upset that they could disregard my instructions as her mother. They did remove the tube when they could see that she was indeed nursing well. Even the night shift nurse complimented me by telling me in all her years as a nurse she had never seen a baby and mother so naturally, comfortably nursing. Yet there were so many things that went wrong in that NICU. So many things that compounded against my little Bridget. She had been making great progress, going forward to our goal of taking her home. And then she became so weak. So many steps back. They put the feeding tube back in. Put her in the isolette. Told me not to hold her so she could get stronger. So many things there.

And this feeding tube today takes me back. Back to after Bridget had been discharged. We took her in to see the pediatrician for a weight check. It had been a week, and she had not gained any weight at all! She hadn't lost any, but in a full week, Bridget had stayed the same weight. He was concerned, and of course we were as well. He talked about a feeding tube, and I told him I felt confident that I could do that at home as we had done it with our son. But I wondered if we could try oral feeding a little longer, or if we needed to rush to the feeding tube. He thought we could wait a couple more days, alter her feedings and see how she did. When we brought her back in those couple days later, she had indeed gained weight, and the feeding tube idea was left behind.

But the feeding tube came up again. The day before her crisis event. Bridget had seemed so weak. I was so concerned. So worried. The doctor wasn't. I was telling him all the things that seemed to be wrong. I was worried about her "overbite" that seemed to be getting worse. It was like she was so weak she couldn't even keep her jaw up. I asked him if her small jaw could be the reason she was such a weak nurser. He told us the medical term for her small jaw, "micrognathia." He wasn't really worried though. He did agree that it could potentially make eating or breathing more difficult. But he cited her weight gain (though also conceded her weight gain had been minimal) as proof that she was not impaired in this way. I argued that her breathing was concerning me, so shallow at times that I wasn't even sure if she was breathing. He seemed to be so annoyed with how insistent I was at her condition being so concerning, when he was quite certain that there was nothing wrong beyond a mother whose grief over a child who had died during this time of year letting her paranoia get the best of her. He chided about how we could put her in the hospital and do extensive, intrusive testing, but that of course, that would just put a lot of physiological stress on Bridget and wouldn't we want to avoid that? He ordered a swallow study to be done outpatient, though. I asked what they would do if her jaw indeed did cause issues with her breathing. He told me that sometimes they would put a feeding tube down. Not necessarily for feeding, although you could use it for that as well. But that way it would push the tongue forward a little bit to keep the airway a little more open.

I left his office. There was a lot more that went on that day. He seemed annoyed, and yet was courteous in taking the time to try to quell what he thought was my over-sensitivity. And these last couple of weeks, and this time of year. Well, back then he thought it was just the time of year, didn't he? My mind has been so injured so as not to be able to have confidence anymore. I struggle to know-- is everything okay? Or are things going to get worse and worse and worse? Questions with much greater intensity now than the same questions back then. Back and forth. Forward? Or Back?

I don't know what is going to happen in the future. I am plagued with the grief of my two little ones, but so much more. The not knowing that shreds my spirit. The repetitions of such a difficult moment-- what was supposed to be such a very close, intimate moment, the most intimate bond between mother and child. While breastfeeding. The crisis event. Not once. Twice! Same day. Saturday. Both times! Saturday, September 8th. The dates, the day synchronized? Both at the same breast. The intensity of it all seared into my soul, and how significant the numbers suddenly seem. And how I have to fight to press forward, carry on, while all that has happened in the past holds me back, takes me back as if I am there witnessing it all again, wondering if I'll be witnessing it all again, and in my dreams witnessing it all again and seeing so much worse.

I just wish instead of typing these words, recounting these things. I wish for being naive. If I could only be planning her birthday party, and worrying about finding the right gift for her... so many of those little things, too, that I miss. It is the missing her. The missing Dominic that is the grieving. And there is the frightening depths of despair from the horrors of it all that even those who understand the grief seem to not even understand. Wanting to go back. But trying to go forward.

There is so much I want to take back, too. So many things. The "what ifs" that I know you are not supposed to consider, because none of it can change things now. And yet, I wonder if I will ever get Dominic back. Wonder if I'll have Bridget back again. If I have somehow lost favor with God enough that he would curse me in this life so much, that there is no hope for a future. And I have to go back to my teacher Job. Who was tormented, but was loved by God. And I have to keep fighting to carry on. To press forward, so that I can go back.

Though he slay me, yet will I trust in him: but I will maintain mine own ways before him. He also shall be my salvation
~Job 13: 15-16

Healing

noreply@blogger.com (~plaid) — Sun, 28 Jun 2009 22:52:00 +0000

Maybe it was coincidence. I never really watch television except an occasional program on public television. But while I was with Sarai in the hospital I was struggling and needed a mental distraction. I turned on the television and watched a program called Dr. Phil. He was giving advice to families who had faced trauma and grief from the sudden and unexpected death of a loved one. I didn't catch the whole episode, but enough of it to enjoy some of his insights, though I found some phrases or suggestions like you have to "move on" a little too insensitive. But I could sense he was sincerely trying to encourage healing in these people's lives.

His show ended, and then Oprah came on. I really don't watch these shows, and it was so odd what topics were being discussed. This episode featured a mom who had made the terrible mistake of leaving her baby in the car too long, resulting in the death of the child. I honestly don't remember this specific case, but don't tend to be quick to condemn. So I felt a sense of understanding in watching and listening as she described her experience with grief and how she is working on healing.

There has been so much happen in this last week. My last post was from the hospital. Today I am writing from home. I had a very sick little girl who is still sick, but healing.

I can't describe what it was really like to be there again. We've been in that hospital three times before with her and wondering what was going on and never really getting answers. It is where Bridget and Dominic were with so many tests to try to understand being performed and still we are unsure why they had their crisis events.

They were at least able to find some things this time. And yet, there are still things left open-ended. We already know how doctors want to help but aren't always able to. I held my little girl and just wanted to know -- is she okay? Is she going to get better? Is there something more than the respiratory illness that they have found?

Tests did come back confirming that she had a carnitine deficiency in addition to the respiratory illness. Some may not even have any idea what that means, but I was already somewhat familiar with this condition. It is one that was suggested to me early in my pregnancy with Sarai. It is something that specialists wondered about Dominic and Bridget having. When Sarai was in utero, they told us we'd need to test her for this when she was born. Because if she had this, it was easy to treat with a daily supplement, but left untreated the child would be susceptible to the same cardiorespiratory distress that Dominic and Bridget had had. We had indeed, tested her, but at the time the results did not look concerning. Now, however, she indeed had low carnitine levels.

I wonder about this diagnosis and how long her levels might have been low. The doctor feels comfortable with the theory that it is only a result of her being ill for so long and not eating well. But I am not so sure. The doctor feels that this is related only to the illness and not some underlying metabolic disorder. Yet he also conceded that there is just so much doctors don't know and that there is still a possibility of something else. And where you read of the deficiency causing encephalopathy, I find yet another term that I've heard discussed before.

They decided that a feeding tube was a good idea for Sarai. So they placed one. That sounds really simple, and usually it would be. But for some reason it wasn't so simple. The nurse tried to place it and was unable. Another nurse tried to place it and was unable. They called the charge nurse in, and even she was unable. The doctor said we should take her to radiology in the morning to have it placed. The next morning, the nurse came in and tried to place it. She tried and tried, just as the others had. Sarai was very upset by all of this. The nurse was perplexed and said that in the nine years she had been working, she had never been unable to get a tube down. Another charge nurse came in. She was finally able to get it in, the trick being to leave the stylet inside. Here she is after that first tube was placed, still not feeling well at all.

Later they were suctioning out the secretions from her nose and throat. She really doesn't like that at all. She was very upset, and afterward I was holding her and trying to comfort her. I realized there was milk bubbling out from her nose and mentioned this to the nurse. She came over and we wiped it away, just to have more milk appear. She left to get the charge nurse as milk continued to bubble out of her nose. As the charge nurse came in, the end of the tube suddenly popped out. This was where the milk was coming from. Of course, this meant another attempt at putting down a tube. And with all the difficulty of placing the first one I was concerned about doing it again. However, they used the stylet again and were able to place it in just a matter of minutes. Here she is with the second tube, and starting to feel a little better after having had the carnitine supplement, the continuous feeds, an IV going, and generally starting to fight off the illness that they say started this whole thing.

Unfortunately, Sarai coughed that tube up when they had to bug her again. So yet another tube was placed. And fortunately this time the stylet trick worked again. She was continuing to seem to improve as well. Everyone was so excited when they were finally able to see her awake and even a little intersted in playing. She was even somewhat interested in food, though not quite swallowing much. So she would let it fall down the front of her shirt, which you can see in the next photo of her sporting the third feeding tube.

Sure, the doctors and we are all glad that Sarai has made good improvements. It was so upsetting to see her so sick and not seeming to get better those first couple of days. And while I am so glad to be home and so hopeful that she is healing, I still feel quite nervous. There are still thinks that have the doctor perplexed, just like the last three times she had been there. Like the strange breathing episodes she would suddenly have that looked bizarre and yet her vitals would stay in a good range through:

So many unknowns, and yet I hope she really is healing. It is so scary, though. I felt like I was working on healing after Dominic died, and then suddenly the wounds of grief were ripped apart with Bridget's death. To say it hurt so much is an understatement. Last night as the alarm kept going off with low heart rate, I tried to imagine it was just the feeding tube pump alarming. It is hard to think she is okay when there is still so much healing left for both her, and healing left for my mind to do.

It was nice to spend the day at home together again yesterday. I try to stay focused to enjoy the sunshine in spite of the shadows. We are so grateful for each moment. I think she is just absolutely beautiful, even with the tube.

Troubled

noreply@blogger.com (~plaid) — Thu, 25 Jun 2009 02:33:00 +0000

The troubles of my heart are enlarged: O bring thou me out of my distresses.
Ps. 25: 17

I wrote of being sick and having my husband and little ones sick. All of May we dealt with illnesses. And now June has also been filled so far. I had been grateful that the baby hadn't become ill. And then at the beginning of the month she started having a yucky nose and really red eyes. She was acting miserable and tired. We took her to her pediatrician and he thought it was merely allergies. By the end of the week she was still not doing better and was tugging at her ears. It was the weekend so I took her into urgent care. They examined her and decided it must just be teething with maybe a little eye infection which was beginning to clear up with drops. That night she started having fevers. Three days later when she was still not better, I took her into the family practice. He said both of her ears were red and started her on an antibiotic. Every time I gave it to her, she would throw up. She started getting so much more sick. I called the doctor again and explained that the antibiotic seemed to be causing more trouble. He had us wait until morning to make sure and when I called back to confirm that she was still doing poorly, they switched to a new antibiotic with only a three day course.

Her fevers continued. She did not seem better at all. Her heart monitor kept alarming more and more with high heart rate. Finally, we spent the night with the monitor pretty much constantly alarming. Her temperature was only getting higher. She was not eating anymore. Could hardly breathe as her nose was so congested. We decided to take her to the emergency room, as urgent care wouldn't open for three more hours and couldn't do IV fluids if she needed them.

We got to the hospital where she was born and were quickly brought back to a room. Her heart was still racing. The doctor came in and did an exam, then told us she looked very ill and he wanted to transfer her to the Children's hospital. We reluctantly agreed. I really didn't want to go there. Where we were last fall and they couldn't find answers. Where we were with Bridget and Dominic when they died.

But here we are, going on three days later. And she still has fevers and is not eating and is just so miserable. They were able to identify that she has a viral respiratory infection, which led to the ear infections which is all causing the fevers. But she had a complete course of oral antibiotics before we got here and then has had three days of IV antibiotcs. And the viral infection usually runs its course in 7-10 days, with 2-3 days of a fever. She is going on three weeks of this and 10 days of fever.

Because of the suspected metabolic disorder in the family, they ran extra tests. One came back showing a possible deficiency that was thought to be one Dominic and Bridget may have had. We had already talked with the specialists about this while I was pregnant with her and how we would need to test her after she was born. They had tested her before, but had not thought it was a problem then. So now they are working with the specialists to sort things out. I was told they'll have all the information in the morning.

They've decided to put her on a feeding tube, but after several attempts couldn't get it down - her passages just too tight. They will do it in the morning using radiology to guide it down. They also have more tests to do in the morning. And in the meantime it's IV fluids and tylenol combined with motrin to keep her fever down.

All of it has my heart and mind so troubled. The news reports of a child life flighted here yesterday but who has now died. A code blue was just called. I know too well what it is like to be in that crisis. And in some ways, it makes my mind feel it is also a part of this crisis. But I tell myself I am holding my little one, who is gratefully healthy enough to be sick. Which is a positive way of saying she isn't dead. Or even dying. But then that last sentence was what they thought with Dominic and Bridget before things changed so quickly. And when you see how sick Sarai is, you know you are already closer to there than Dominic and Bridget had seemed to be.

I struggle and try to cope through all of this. I just feel so troubled. I'm worried and so I am glad for the medical help, but I'd so much like to be home in my own bed with all of my children well. And I mean all of my children. But I know it cannot be. And now there are even more of those unanswered questions to trouble my mind.

Let not your heart be troubled: ye believe in God, believe also in me.
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
John 14: 1, 27

Celebrate

noreply@blogger.com (~plaid) — Wed, 10 Jun 2009 22:23:00 +0000

One year ago today. Here's Sarai's first picture outside the womb.

She wasn't due until the last week of July, but she came early weighing 4lb. 2oz. She could have come a week earlier when I had placental abruption and pre-term labor. We were lucky to get the two doses of steroid shots and hold things off until she was a little more ready.

I was actually able to hold her shortly after her arrival. She breathed room air from the beginning and mostly stayed at the hospital for feeding and growing.

I had a little trouble with bleeding after delivery, so her daddy followed her down to the NICU where they could watch her closely. We got things under control and I was able to join them not too long after. With Dominic and Bridget's cause(s) of death still unknown, and the concern that there is a potential underlying genetic issue, combined with her prematurity we were very cautious.
It had been less than nine months since I had held my baby Bridget in my arms. Just over nine months since the last time I had nursed her. And that last time is when everything went bad. Since Dominic also had his crisis event with nursing, I was very overwhelmed with finding a way to be true to my philosophical conviction that breastfeeding is best, and my psychological association of the two crisis events.

There was so much about it all, about another premature baby girl so soon after Bridget was born premature. So soon after Bridget's death. Being in the hospital again for a week before Sarai's arrival with all the uncertainty and the risks, and not being naive enough to think those risks only happen to other people. There has just been so many things mixed into it all, and yet here we are. A year later. And we have so much to celebrate!

Sarai has been so sweet. She's been through a lot. Scared us a lot. We've been able to share so much together in this year. There are just things that people take for granted. First birthdays aren't one of those here.

Nursing isn't either. Today I am celebrating that I was able to breastfeed the entire year. Sometimes I had to pump and use bottles-- I pumped on every single day for the first eleven months, and in the early months was pumping every three hours or more around the clock-- but I feel it a real achievement that we made it a full year. It isn't an easy accomplishment even without the psychological trauma I endured. It isn't an easy accomplishment even if you don't consider her prematurity, or her episodes that made her unable to nurse effectively on some days or during some feedings. But we did it!

I feel it was a gift for Sarai to do that for her. To those who don't share my philosophical convictions, I'm not sharing this to discount your preferences. It is just a real gift for us. The even greater gift, though was given to us by Sarai and by the powers of the Universe. That gave us the chance to share this whole year together. We hope for decades more. It is, afterall, her middle name: Hope.

Face

noreply@blogger.com (~plaid) — Thu, 04 Jun 2009 21:26:00 +0000

I recently learned about a little girl who is struggling with her health. There are so many children out there right now with health complications. What makes this little girl stand out to me is that they don't know why. They don't have a name for what is causing her difficulties. They don't have a diagnosis. And her family desperately wants answers. That is a feeling I face every day.

So underneath the pictures of Dominic and Bridget, I've added the face of Maggie Agnew. I don't know that it can make any difference for them. But if you have some way of reaching out to them, some way of giving them the hope that I can't have for Dominic and Bridget, please give them your encouragement.

This life is so full of challenges. Each of us suffer and struggle in such unique ways. Sometimes we can connect in ways because our experiences are familiar, but none are ever the same. We face such different trials and we each have to find our own way through. Find a way to cope.

Recently, I thought I would sign up on Facebook. I thought perhaps it would be a tool to connect to people who had been in my life before, but after Bridget's death seemed so distant. I thought maybe it was something about me not keeping up with the times or not being accessible that made people disappear. Maybe this would be a way to reconnect.

I've been so disappointed. I scrolled down through the past on the walls of people who claimed to have cared. Who said they loved me. I see things posted while we were at the hospital with Bridget, watching her die. And the things they wrote then and how difficult my life was, and yet how carelessly their life went on. They put on one face of sadness for me, but then another face to the rest of the world. I see family members who told me that they didn't have a facebook account, who have actually been on for a couple of years. I see people taking my story for their drama, and at the same time abandoning our family completely.

No one can understand what we have faced in our lives. No one knows what we are facing now. I look into the faces of my children every single day and I wonder if it will be the last day I have to spend with them. I watch my baby in her episodes and wonder if it is still okay, like it has been through these months, or if there is death waiting to show his face again.

It is so difficult to face these things without answers. Without a name. Without knowing why Bridget and Dominic died, we are left to imagine all kinds of causes, and others have room to speculate. Grief itself is enough to weigh the heart. Twice I have had to look one last time at the face of my little one before closing the casket, and must wait to see them again in the eternities. Yet the weight of the grief is only part of what we face in these experiences. And no one understands these complexities. Not even I can understand it.

So much to take in. To process. And we carry on to face another day. Each day a gift.

Birthdays

noreply@blogger.com (~plaid) — Thu, 28 May 2009 02:28:00 +0000

Two years ago I was carrying Bridget in utero. We went to the grand opening of the IKEA store and browsed. We stopped in the eatery and had some meatballs after standing in line for the longest time. We'd been warned that grand openings were big for IKEA. We left the store without buying anything for ourselves. But we stood at the checkouts to buy a gift card to give my friend for her birthday. We signed up for a catalog (as they had already run out) and were on our way.

I stopped by at my friend's house to give her the gift card. A big banner was on her house. Isaac was going to be a big brother -- twice. Two babies and two birthdays. Born only twelve hours apart, but that's another story. My friend wasn't able to carry children in utero, and so she had been blessed with two new children through the miracle of adoption.

Adoption isn't always a guarantee. My friend had already learned that the hard way. She was supposed to have a little girl, but then the birth mom changed her mind. She lost a baby in a way. A different way. I remember hoping that these two little ones would stay. I sat in her home with her, excited that Bridget was going to have these playmates. Wondering if I shouldn't get too attached to the idea, because what if the adoption wasn't able to be finalized.

Only a couple of months later, there I was in IKEA again, only the second time we'd been there. We left the store without buying anything. We left there, Bridget in the care of the paramedics, and I wasn't sure any of it was even real. I had carried Bridget in, but I couldn't carry her out. I kissed her before they took her in the helicopter. They told me I could say goodbye, but I remembered thinking that it wasn't going to be goodbye. I would see her in a little while, and everything was going to be okay. IT'S GOING TO BE OKAY!

It isn't okay. IT ISN'T OKAY!

Back and forth and back and forth and circling in my mind to try to sense if it was real or not real or what to make of it all.

Today is my friend's birthday. After Bridget died, her oldest son was having his birthday and invited my daughter to his party. I drove her there and felt so sad. So so sad. It was so hard. And my friend had other friends who still had babies and they were there feeding them and my Bridget wasn't there. I was so sad. And her two babies were there and my Bridget wasn't there. I was so so sad. At one point, my friend was trying to serve cake and manage a group of small children, and one of her babies was upset. Another mom was holding him, but for some reason -- and I really don't know why -- she gave him to me. It was the first time I held a baby since Bridget had died. And I was horrified. Terrified. I was just so overcome with sheer fright and it was like I was in IKEA again and I didn't know what to do because I wasn't sure if he was going to stop breathing and I panicked. I don't know how long it was, but someone else sensed I was uncomfortable (politely). And she took him out of my arms, and I was so glad. I didn't want to hold another baby again.

Tomorrow is my son's birthday. Last week, another son's birthday. Our family celebrates its birthday in the first week of May. All these come so quickly after Dominic's birthday. And this year, we are planning a first birthday party. Only two weeks from now. I wasn't ready to hold another baby again. But after the birthday party ordeal, my own infant was only the second time I'd held a baby in my arms since Bridget died. I haven't held any other babies, and I really don't want to.

When Bridget was dying, I talked with her about how I had already been planning her first birthday party. It was going to be a big event. I told everyone to put it on their calendars. I was taking so many pictures of her. When she was dying, I promised her I would still have that birthday party. And I broke my promise to her. Her little sister was born prematurely and was having episodes just like Bridget had had. I was horrified. Terrified. I was just so overcome with sheer fright and it was so much like being in IKEA again and I didn't know what to do because I wasn't sure if she was going to stop breathing and I panicked. I was just trying to hold on the best that I could, and I didn't have the capacity to have a birthday party for Bridget. We managed to get cupcakes from Costco and eat them on our back steps and take balloons to her at the cemetery. And even though my mom was here from out of town, she didn't come here or go there to the cemetery. And I wondered if Bridget was angry at me, and she knew I was that kind of mother to not even celebrate her first birthday, and that's why she left in the first place.

I've been thinking so much about how in only a month and a half, Bridget should be turning two years old. And today, when I was thinking of my friend's birthday. And this month as I've been putting together the slideshow for our youngest's first birthday in a couple of weeks. And all these birthdays in between. I have been thinking so much of Bridget and how much I miss her and how I wish she were here to play with those friends she was supposed to grow up with.

I walked some balloons and a small gift over to my friend tonight. As I got closer to her home, a few tears fell down my cheek. I didn't want to go there. She still has her two little ones. I don't have my Bridget. Did going to IKEA that first time while I was pregnant with Bridget make her stop breathing the next time we went there? I had bought that gift card for her then, and then ... I need to keep walking. I need to keep going. I am so happy for her special day. Happy she still has her little ones. It's all so irrational... So many things going through my mind. And as I walked, I was carrying my infant in my arms. And it seemed so abstract. Too strange.

I got back home, and sat down on the lawn. I was taking pictures of my little girl when another neighbor walked by. Allyson, her husband, and her little Brigham. And I had that feeling again, the one I wrote about before:

I sometimes find your friendship difficult now. We were supposed to both have our children grow up together. You still have your Brigham, and I don't have my Bridget. Perhaps it sounds so cruel to think that it is hard for me to see him sometimes. It would be harder, though, for me if you didn't have him in your life. So it is bittersweet. I love that he is still growing and learning and in your life, but I just miss that we aren't sharing that experience anymore.

And it was so hard for me, and yet I was so glad to see him. And as he walked over to me, he was holding up two fingers. Turning two in a couple of weeks... and Bridget. Bridget died. When she was still thinking of names for him, she mentioned the name Brigham. A part of me wished she wouldn't name him that. It sounded so much like Bridget to me. Spelled so much like it. I didn't want their names to be so similar. It was kind of an irrational thought, I guess. Just wanted to keep her name more of her name. And sometimes now that part makes it harder to see him. Say his name. It reminds me that much more of Bridget.

Today is Trevin's birthday. He was born 16 years ago. I never had the chance to meet him. He died when he was 18 months old. I met his mom just before Dominic stopped breathing. I knew of her, but hadn't really gotten to know her. When he was in the hospital dying, and we had to ask all those questions but didn't want to ask them -- questions about funerals and burials-- she told me that she had buried her oldest son. And immediately I was able to ask. There was a connection in that experience that was instant. Over the years I've gotten to know her better. She was one of the friends who came to the hospital with our children when those in my own congregation would not. And she came to the hospital last August when we were there with our youngest, wondering if she was going to succumb to the same yet-to-be-discovered underlying condition that had taken Dominic and Bridget. She came with cheesecake and with two men who had the power to give priesthood blessings when no one from my own congregation would.

I am truly so grateful for all of the birthdays. They are the mark of entry into our family. Even our big world family. And yet, though there is a time to be born, there is also a time to die. And it is that part that is so heavy. When their time to die robs them of even being here to celebrate a single birthday with us. And as I prepare for our family's next "first birthday" celebration, I am so very grateful to be at the point that we will be able to share this occassion with her. And yet, I think back to the last time we were supposed to have a first birthday. And my broken promise. And my broken heart.

Sick

noreply@blogger.com (~plaid) — Mon, 25 May 2009 19:55:00 +0000

Not one day this month has passed that I have not been sick. Some days very sick. Other days more mild. And on those mild days, it has been little ones or my husband, or both, who have been so very sick.

It is hard not to think about the questions of what took my little ones' lives. It is hard not to worry that the potential of an underlying condition could complicate what would be a mild illness to some, and not wonder if death is looming over our family once more waiting to reach in to take more away from us. Sitting here, unaware of the unseen. Uncertain.

Yet, none of it has turned life threatening so far. And I try to take solace in that, until I think about how well the doctors thought Bridget and Dominic were doing in those days just before their Saturdays. Their September 8ths. They hadn't even been sick. And there is no peace.

Last night, we waited. Our home teachers were to come at five o'clock. We waited, and I had a list. Because they often will say, "is there anything we can do for you?" And in the hurriedness of the question they ask as they already have one foot out the door, I can't compose my thoughts in time to respond. So I wrote down a list. A few incidental things, and finally, "Blessing."

Five o'clock came. The priests hadn't come with the sacrament. Would our Home Teachers really come? Then six o'clock came. The phone rang. He acted as if there never was an appointment made. Said he'd talked with my husband last week about maybe coming and that he thought he had said today would be a good day. He had talked to me last week, and we had set the time for five o'clock. Oh well. He asked if seven thirty wouldn't be too late. I invited them to come. Then my oldest who had been so very sick was now violently ill.

Still, the knock at the door came. There was only one man, without a companion. Immediately, my mind went to the bottom of my list. "Blessing." We were sick. My oldest's illness had escalated and I was becoming more concerned for her. My husband hadn't had a blessing in many months. I couldn't lay my hands on his head. And alone, this man could not either.

And now behold, my beloved brethren, I say unto you, do not suppose that this is all; for after ye have done all these things, if ye turn away the needy, and the naked, and visit not the sick and afflicted , and impart of your substance, if ye have, to those who stand in need—I say unto you, if ye do not any of these things, behold, your prayer is vain, and availeth you nothing, and ye are as hypocrites who do deny the faith. (Alma 34:28)

It is always the same companion who doesn't come: the Bishop. I am sure he has many duties and obligations. But ours, as home teacher of our family, is one he committed to. The last time I saw him was over a month ago when I ran into him in the grocery store. And the very brief conversation was about store policies and location within city boundaries. When a clerk asked if we knew each other, he just casually responded, "we're neighbors."

And who is my neighbour?

And Jesus answering said, A certain man went down from Jerusalem to Jericho, and fell among thieves, which stripped him of his raiment, and wounded him, and departed, leaving him half dead.

And by chance there came down a certain priest that way: and when he saw him, he passed by on the other side.

And likewise a Levite, when he was at the place, came and looked on him, and passed by on the other side.

But a certain Samaritan, as he journeyed, came where he was: and when he saw him, he had compassion on him,

And went to him, and bound up his wounds, pouring in oil and wine, and set him on his own beast, and brought him to an inn, and took care of him.

And on the morrow when he departed, he took out two pence, and gave them to the host, and said unto him, Take care of him; and whatsoever thou spendest more, when I come again, I will repay thee.

Which now of these three, thinkest thou, was neighbour unto him that fell among the thieves?

And he said, He that shewed mercy on him. Then said Jesus unto him, Go, and do thou likewise. (Luke 10:29-37)

No mercy has been shewed on us. It has been six months since this man has come to our home. We were left sick, "passed by on the other side." Now, so literally sick, and how my mind is still a little sick from when Bridget died. My heart so very sick.

I asked the man who came why the Bishop never comes with him. Why we never see him otherwise. He tried to give this excuse or that excuse of how busy he is or how other responsibilities are just a priority. Then he conceded he had no good answer.

Then said he unto him, A certain man made a great supper, and bade many:

And sent his servant at supper time to say to them that were bidden, Come; for all things are now ready.

And they all with one consent began to make excuse. The first said unto him, I have bought a piece of ground, and I must needs go and see it: I pray thee have me excused.

And another said, I have bought five yoke of oxen, and I go to prove them: I pray thee have me excused.

And another said, I have married a wife, and therefore I cannot come.

So that servant came, and shewed his lord these things. Then the master of the house being angry said to his servant, Go out quickly into the streets and lanes of the city, and bring in hither the poor, and the maimed, and the halt, and the blind.

And the servant said, Lord, it is done as thou hast commanded, and yet there is room.

And the lord said unto the servant, Go out into the highways and hedges, and compel them to come in, that my house may be filled.

For I say unto you, That none of those men which were bidden shall taste of my supper. (Luke 14:16-24)

And then the inevitable wrap-up-the-discussion question-- more a closing than any open-to-answers-inquiry, "is there anything I can do to help?" And the hurt part of me wanted to forget that I had a list and let him be on his way. But the sick part of me yearned for healing. The need of my family weighed on my mind. And I lamented out loud that he alone could not lay his hands on the head of my husband, and such is the necessity of a companion. He heard me out as I went down the list I had. Then we called another neighbor, one that has answered and come for this request in the past, and they came and gave blessings to the sick and afflicted.

We are not yet healed. No quick miracle. I wonder of this long-suffering we are enduring. How it interferes with our capacity to reach out to others. To even move forward in our efforts to attend church again. And what could be the purpose of it? Have we not already endured enough? In the blessings, I'd hoped to hear words to comfort me that there would be rest, at least for a short season. But instead, I wonder now what is yet to come. And yet, I also was reminded, in Hope, of that which is yet to come. A day of reunion. When I will have the opportunity to be with Dominic and Bridget again. When our family can be joined in whole. And none of us will ever again be sick.

Church

noreply@blogger.com (~plaid) — Wed, 06 May 2009 18:27:00 +0000

I went to church on Sunday. I took my daughter, and on the way home, she asked why we didn't go to church anymore. I gave her the quick answer about how my mind is still a little sick from when Bridget died. My heart so very sick. She seemed to understand, but I didn't. I don't understand!

The first time I left the hospital after Bridget was born, I left to go with our family to a church activity. I just didn't want to leave Bridget, but I also was feeling so much frustration and thought maybe getting away from the hospital stress to spend time with our other children could help.

When we registered at the hospital, I had made sure to request that no information be shared with anyone at all who might call or visit. The orders were that the hospital would respond that there was no such patient if any inquiries came in. But the day before we were discharged, some people from my church had figured out we could be at the NICU and called. The nurses in the NICU evidently hadn't noticed the privacy orders, and gave me the phone. Now the speculation could be confirmed, and the gossip (in guise of concern) could be spread.

When we were home, I had a hard time overcoming the feelings that the time in the NICU had robbed us of time as a family. I felt it had robbed me of confidence in myself, in my role as a mom. I wasn't sure if she had been so sick that she really had needed that care in the first place, and then I wasn't sure if she was really well enough to be home. I tried to make up for the lost time, and tried to find my footings again. I felt even more unsure when breastfeeding seemed so very difficult. Bridget was such a weak nurser, and even breastfeeding with Dominic seemed to be easier. I focused on caring for Bridget and didn't leave her at all. Except for that week I went to church to teach my lesson in Relief Society.

Finally, we took her to church. The first Saturday in September, we took Bridget to the church for the first time. Her older sister would be baptized. Following that, Bridget would be blessed.

I had been so worried about her that morning. She was nursing, but still seemed so weak. And more and more she was having episodes where she was so lethargic. I was very concerned, but whenever I'd ask the nurses or pediatrician about it, I was just told that premature newborns are more sleepy. Premature babies have a harder time with nursing. I would try to remind myself that just because it reminded me of Dominic's lethargic episodes it didn't mean there was a problem. He had had botulism, and Bridget was actually growing pretty well and didn't seem to have other symptoms of botulism. But in the church that day, as I was changing her into her blessing dress, I panicked a little. She seemed too floppy. Too sleepy. And we took her home and fed her and talked about how worried I was while trying to convince myself there was nothing to worry about.

The next morning, we took her to church again. We sat in Sacrament meeting, and I held her in my arms as I bore testimony of Christ and His priesthood and the reality of eternal families. I held her in my arms, just like I had held Dominic in my arms exactly six years before, as I bore testimony then. After the meeting, I was just too concerned about Bridget. I felt she needed to nurse again, but the nipple shield I had been using with her to make it easier for her was at home. So we went home and fed her and talked about how worried I was while trying to convince myself there was nothing to worry about.

Later that afternoon, we headed up to Temple Square. Here is how she looked just before we left:

I'd always get so worried about her, just to have her seem to be a pretty normal newborn. And I would try to reassure myself she was fine in these moments, the way I had tried to reassure myself Dominic was okay, too.

It seemed to be a nice, warm day. We walked around the Temple grounds while we waited for other family to join us. My mom had come into town for the blessing and baptism, and so had my sister. They would be coming, as well as family who lived in town. But, as usual, we were the first to arrive and would wait for awhile until the rest showed up.

I started to worry more about Bridget. It wasn't a really hot day, but it was warm. And she always seemed to wilt in the heat. We headed inside the Visitor's center to cool down a little while we waited. I didn't realize how very sick she looked then. I think it was because I was trying so hard to convince myself she was okay, because all the "professionals" kept telling me she was okay. But in hindsight, these pictures haunt me. And I wonder why I hadn't rushed her to the hospital and begged them to look. Look! LOOK!

She was so weak. So lethargic. So floppy. I see her arm and think her heart must have been struggling with circulation. Soon after we took that photo, our family joined us. I was distracted again. The Church has a statue of the Christus, and we went to the presentation there. Then we went into a new exhibit on the family. I held my little infant daughter in my arms as we watched a movie about a couple and their infant daughter, pondering what the most important things would be to teach her: that she is loved, and she is a daughter of God.

We moved on to a presentation in the tabernacle. On our way, I remembered a cute little lady commenting on how little Bridget was, and how she seemed dressed to match me. At the tabernacle, there were pews, just like when we had taken her to church earlier in the morning.

I was starting to think she was sleeping too much again. I needed to feed her, so we headed over to the museum where there was a hands-on exhibit for the kids. They could play while I took Bridget to feed her. I was so worried, though. I kept trying to wake her, and she wouldn't even latch on. I took off her shoes and socks and tickled her feet. I kept trying. She wasn't waking up. I went back to where my family was, and my sisters tried to help me wake her up. She finally stirred and she did latch on. But it seemed she was just so weak. I was worried but trying to convince myself there was nothing to worry about.

On the way home, we passed an ambulance. I had a hard time seeing ambulances since Dominic died, but I usually didn't get so upset that I would cry. But for some reason, the tears came. I was very overwhelmed. I wasn't sure if it was because the ambulance had its lights and sirens on, and that it was near the freeway. I wasn't sure if it was because the days were aligned just like they had been six years before. I wasn't sure if it was because Dominic's anniversary was coming up, and I missed him so much, and the ambulance brought it all back. But I was certainly responding in a much more heightened way to seeing that ambulance than I had in many years.

The next week, we were looking forward to taking Bridget to church. One of our neighbors would be blessing their newborn son, and her uncle, Elder L. Tom Perry, would be attending. I was looking forward to having the opportunity to have Bridget meet an apostle. Instead, on that Sunday, September 9th, we were in the hospital watching Bridget die. We were still hoping for a miracle. We left her bedside to attend the Sacrament meeting in the hospital. I cried. I cried a lot. I remember one of the speakers talking about how he'd spent a lot of time in that hospital as a child, and trying to give the parents hope that those struggling times had made him who he was. And I remember thinking that I wish I knew that Bridget would be here in future years to bear her own testimony of the struggles she'd overcome. And knowing that Dominic would never have that chance. And realizing that I knew too well that not every hospitalization meant healing, and that Bridget might not ever have that chance.

Bridget never did meet an apostle, though she was put on the prayer roll of the First Presidency. Our Bishop and his counselor came to the hospital. At church they had changed the Relief Society presidency. I sometimes question God, or question the reality of revelation, when I think about the timing of that change. I told the Bishop and his counselor how I had been looking forward to the chance for Bridget to be there this week, and was sorry we weren't there instead of in this hospital. The response was, "yeah, you should have been there. It was a really special meeting. Elder Perry called one of the kids up and..." I really didn't listen. I couldn't bear it. We were supposed to have been at church. Instead, we were in the hospital with Bridget. The same one, the same floor, the same PICU that Dominic had been the same time six years before. I had just finished pointing out that I would have rather been there than in this hospital, and then you go on to tell me why it would have been better? As if I hadn't already recognized that without the details? And I felt like these men had no compassion. And when the bishop came back two days later, and hadn't even thought to turn off his cell phone, and answered it and felt it more important to talk to a candidate about politics at the bedside of my dying child instead of politely taking the call out in the hall or telling the caller he'd call back later, I knew the compassion was lacking.

My mom had flown out to help with our kids while we were at the hospital with Bridget. She had a flare up in her knee and suddenly was unable to drive. We were too aware that Bridget was not going to have the miracle of healing, and that she would be dying soon. With my mom unable to drive, how would we get our children to the hospital to see their little sister before she died? We called the Relief Society president for help. She said she would call around to see who was available. And when I talked to her again, she told me no on could help. I was so overwhelmed with helplessness, and desperate for my children to come to be with us before Bridget died. Bridget was too critical for us to leave her. In desperation, I responded out loud, without even realizing the words had been spoken, "I need more friends!" And her reply was, "You just need more friends who don't work." And my shattered heart sunk so much more deeply, to think that no friend I had could be inconvenienced enough to leave their work to help my little ones have the chance to say good bye. But I called a friend I'd met at church when Dominic was dying. A friend who was outside the boundaries that had changed a few years earlier. And she came to help.

The Bishop didn't come back after the day his cell phone was more important than my dying child. Bridget died on Saturday. Just as we had done after Dominic died, we went to Temple Square. The same one we had been at less than two weeks before. And my daughter wanted to go back to the family presentation. I sat in that same room where I held my little infant daughter in my arms as we watched a movie about a couple and their infant daughter, pondering what the most important things would be to teach her: that she is loved, and she is a daughter of God. And I wondered, as my arms ached to have her back, if she knew. If she knew I loved her enough.

I don't remember now if we went to church the next day. But I remember sitting with the Bishop and the new Relief Society president. And I remember contemplating if we should have her funeral at the funeral home instead of the church. After Dominic had died, our then two year old would say, "Dominic died" every time we'd go into the chapel. She would remember that as the place where his little casket lay in front of the pulpit, and her young mind only knew how to express the memory with, "Dominic died!" It would hurt my heart each time I heard it. And when she got a little older and we changed buildings, she stopped saying it. And I was glad for that change.

We decided to go ahead and have her services at the church. Thursday, September 20th, in that Relief Society room where I had gone without her the month before to teach my lesson. I looked down on her little body for the last time before we closed the lid of the casket, laying on the table in the front of the room. The clock was broken. Just like my heart. But I wish that time really was stopped. And that it wasn't racing by so fast that I couldn't reach back to grasp my little ones before death could take hold.

At the cemetery, the Bishop told us he'd call us later that night. He never did.

That very next Sunday, I went to church. I taught the lesson in Relief Society. "It's True, Isn't It? Then What Else Matters?" In that same room where I'd last looked on the face of my sweet baby girl. In front of that same table her casket had laid on.

We kept going to church. Our Bishop still did not call. I wondered why. I thought maybe he was uncomfortable, and didn't know what to do, what to say. I sent a copy of Suggestions for Clergy from Compassionate Friends, thinking it could help. Shortly after I sent that, his Secretary called to make an appointment to meet with us. There was no church that day due to General Conference. He came to our home, and the first words after he sat down were, "Have we done enough for you yet?" I had wanted to believe this man had compassion, but was only unsure of how to help. But now I knew, the compassion was lacking. I still tried to explain that it had not even been two weeks since we buried Bridget, and that our experience with Dominic had taught us that we would need a lot of support for some time to come. Weeks, months, maybe even years. That all the overlaps was making this so much different, so much deeper, more difficult. That we needed dedicated home teachers, at least. But our pleading was in vain.

We still went to church. I continued to prepare monthly lessons in Relief Society. The answers of what caused Bridget's death were still unanswered, and there was a lot of concern about whether or not the rest of us could be in danger. We were having a lot of testing to sort things out. In the midst of all the testing, I discovered I was expecting again. It had been such a big surprise. We were not ready to have another child. And the pregnancy was already threatened. I was ordered to bed rest. And I stopped going to church.

I did continue to go to teach my lessons. But medication I needed to support the pregnancy made me very dizzy. I was emotionally so weak. I could feel the intensity of prayers that had been offered in our family's behalf after Bridget's death had stopped. I was getting weaker spiritually. I was just unable to do very much at all-- physically, emotionally, mentally... my capacity was just too limited.

I had asked to keep my teaching assignment. But then with these circumstances, and for whatever other reasons, I was replaced. I wasn't needed, just like I wasn't needed to take care of Bridget anymore. I wasn't released. Just replaced, with an assignment that was in name only. We hadn't seen home teachers for months. They had only come the one time after Bridget died. We were getting so much more weak, and going to church just was becoming more and more such a difficulty.

I finally was off bed rest. I woke up that Sunday, and and was getting ready to go to church. The young men came to our door for fast offerings, and left the usual monthly newsletter. I sat down to scan over it, when what I read sent me into a tailspin of flashback and emotion from that day in IKEA. That day in Lagoon. When we were desparately trying to use CPR to save my children's lives. And it had failed. Suddenly, the emotions of those days events were spinning together with my efforts to go to church. And everytime I started to think about getting ready to go to church, it triggered the flashbacks. The agony.

We had so much to carry those months I carried our youngest child. And then when there was preterm labor and bleeding from a placental abruption, I was hospitalized. I stayed for a week until she was born, then stayed another eight days in the NICU with her. So many overlaps. I couldn't go to church, but did have the sacrament there. We were instructed to keep her home from places like church to protect her from illnesses, and to keep the other children home, too.

When she began having episodes like Dominic, like Bridget, we were very concerned. She was hospitalized. No one from church came. We took her home again, just to have her hospitalized again. The night before we took her to the hospital, our hometeachers were supposed to come. The time for their arrival came and went. I was waiting for them to come to give her a blessing becasue we were very concerned about her, while trying to convince myself there was nothing to worry about. They called several hours later. I told them that we were likely taking her to the hospital, to which the response was, "well, I guess we'll just try to catch up with you later then." No sense of concern. No visit to the hospital, no offer to help. That next day also happened to be my birthday. I called the friend who'd come to take my children to see Bridget at the hospital. She came with her husband, and another friend and her husband. They brought cheesecake and the men blessed our newborn. But no one from my congregation came. For days I wasn't even sure she would even wake up. Where was the strength of fellowship in our time of need? We called elders at the hospital to give blessings. The doctors still couldn't find answers for us. But she did finally wake up.

We took her back again when she appeared to be going into another episode. The week of September 8th. And we were there in that hospital, where we'd been the year before. Where we'd been seven years before. And my mind couldn't bear it. My heart couldn't bear it. And where were those who had made a covenenant to be give comfort when I was so much in need of comfort, but so unable to stand?

RSV season. Don't go to church. Triggers. Flashbacks. Can't go to church. Hurts. Heartaches. Won't go to church. I went to church on Sunday. I took my daughter, and on the way home, she asked why we didn't go to church anymore. I gave her the quick answer about how my mind is still a little sick from when Bridget died. My heart so very sick. She seemed to understand, but I didn't. I don't understand!

Months have gone by. I try to go to church. It still is so heavy. I cannot go by that building without the crushing weight pressing on me. And I have tried. After months of being told I could go there sometime on my own, that the bishop would get me the keys, finally a sister got the keys for me. It was just a few weeks ago. The week of Dominic's 8th birthday. I had the keys in my hands, and I tried to go to church. My body was overcome. My skin broke out in hives. The next morning, my face was swollen. So swollen, I went to the doctor and got medication. My body just couldn't handle it all. All the trauma of all these things overlapping. The agony.

When the meeting was at another building last week, I thought I'd try again. It was hard. It was harder as I fought off the terror in my mind when I saw an infant, lying on the floor in that windowless room. On a blanket. Sleeping? Looking like the paramedics needed to be there. Just like they were there working on Bridget in that windowless room as she lay on the blanket... sleeping? It was such a difficult trigger. But I forced my mind out of it. Like the speaker said, I can do hard things.

But going to church is harder than hard on some days. Most days. Last month, our home teachers again didn't come. The assignment was switched to the Bishop and his counselor months ago just so that our family would not be neglected. And yet, months still go by without a visit, or even a call. Since Bridget's death nearly 20 months ago, we have had more than half of those months without any contact from home teachers. Really, only about a quarter of those months. A quarter we are grateful for, but we need a whole to fill holes and be whole!

For months, recognizing we did not have the capacity to go to church, we asked for the sacrament to be brought to our home. The sacrament has a power of renewal. A power we need in our time of such great weakness. Finally, our request was considered worthy enough to send the young men. But it is unpredictable whether they will come each week after church.

So many things rush through my mind as I ponder the question: why don't we go to church? So much, but no real answers.

Next week is mother's day. It is such a difficult day knowing that in this mortality I will never have the opportunity to be with all of my children on the day we celebrate motherhood. I have always hated going to church on this occassion. My mother hated the day and how it represented so much of what she was not representing in her own role as mother. Going to church usually meant hearing from a speaker who just couldn't understand the difficulties of a young mother with five children and a husband who had abandoned us all. I learned in childhood that it wasn't a day to look forward to.

But I admit, as I had my own children I did find it a special honor to be called mother, and loved to hear the little ones sing in tribute to us. And to receive little gifts, and to see my little ones around me. So I miss my little Dominic and my little Bridget ever so much more on this day. And I don't like going to church to hear how it represents so much of what I am not representing in my own role as mother. And I don't want to hear from a speaker who just can't understand the difficulties of a young mother with eight children and two of them who have already gone on without us.

But I am still working on going to church. It won't be, can't be, in that building where we last saw the tiny little body of our sweet baby Bridget. Where so many people seem to be lacking in compassion, sensitivity, real concern. But perhaps, in that other congregation where friends have responded in the greatest times of need. Where we have had their arms wrapped around us instead of merely waved at us in passing. Perhaps there I will be able to fight off the terror. The triggers. The trauma. And find the fellowship that has been missing. And maybe get strong enough to make going to church as much a part of our lives as it was before Bridget died. Maybe. Where holes can be mended, and we might be made whole.

When

noreply@blogger.com (~plaid) — Sun, 03 May 2009 03:12:00 +0000

When Dominic was born, I remember the worry I had when they took him to clear out a little fluid that seemed to make him have some trouble breathing. I asked if he was okay, and the nurse was so reassuring, and it was only a few minutes before I was cradling him in my arms again. Perhaps the thought had crossed my mind that I could lose him, but if it did it was so fleeting that the thought wasn't seered into my memory. I could not have guessed that on the day he should have been baptized, I would be here so very sad without him.

I woke up to rain this morning. We went out this morning together as a family, but not as a whole family. And I thought about how it would have been so much nicer to be all going to the church to have Dominic baptized, surrounded by family who was there to witness the sacred event.

But no one was here to visit us. There was no occasion worth the trip.

We changed our plans mid-day and decided to take the younger kids out for a special trip. As we were heading to the freeway, there was a rainbow behind us.

I thought of Dominic, and the popular Primary song that children sing at baptisms. And I missed him even more.

I like to look for rainbows whenever there is rain
And ponder on the beauty of an earth made clean again.

I want my life to be as clean as earth right after rain.
I want to be the best I can and live with God again.

I know when I am baptized my wrongs are washed away,
And I can be forgiven and improve myself each day.

I want my life to be as clean as earth right after rain.
I want to be the best I can and live with God again.
"When I Am Baptized", Children's Songbook 103

We were on the freeway, heading north. IKEA was coming up. I hated thinking that Bridget also wouldn't be here for a baptism in six years. I looked to the East, as I usually do to avoid seeing that place where Bridget stopped breathing in my arms. And I saw that a rainbow was across the mountains where the temple was.

The rainbow painted the mountains.

It was such an interesting, spectacular thing to see.

I can't articulate the things in my mind. How much I wish to share these things with Dominic, and Bridget, too.

When Dominic was dying, I remember the worry I had when they put him in our arms. How he seemed to have some trouble breathing. I asked if he was okay, and the nurse seemed so reassuring. But it was only a few minutes I had to cradle him in my arms. Cradle him for the last time. We sang to him, and I couldn't always remember the words. Just like when I'd cradled him at home and sang to him. One song I'd learned when he was only weeks old was one of our favorites, and he would smile and coo along with me as we sang.

When in innocence and love,
Like the angels up above,
They with happy hearts and cheerful faces meet.
"In Our Lovely Deseret", Hymn 307

And I don't know when I'll be able to cradle him again. When I will see him again. When?

When Bridget was born, I worried. I was surprised when she had trouble breathing then. She wasn't supposed to have trouble breathing. When I'd gone in that morning that she was born, they had done an amniocentesis. Her lungs were mature. But later we learned she had a small leak in her lung called a pnuemothorax. It was on the same side she also had a fractured collarbone. They told me sometimes when a child is born, there is birth trauma and these things can happen. I was surprised when she was born. I was surprised when she stopped breathing in my arms. That day in IKEA. Too much trauma when these things happen.

And I don't know when I'll be able to cradle her again. When I will see her again. When?

Dominic's 8th Birthday

noreply@blogger.com (~plaid) — Thu, 16 Apr 2009 15:30:00 +0000

Birthday wishes. Wish. Wish. Wish.

I wish I had video of Dominic. But all there is was taken in the hospital while he was dying. No video of his birth. No video of his first this, his first that. No video of his smile. No video of his laugh. No video of his hiccups. No video.

I wish I had eight years worth of pictures to go through. Trying to decide which ones are the best ones to put together into this year's tribute slideshow.

I wish I could hold him. Tell him "Happy Birthday". Remind him of what labor was like with him and how excited we were to have him here. How happy we are to have him be a part of our family.

I wish he was rememembered. That outside of our home, other people would have already thought of what to send him, what to do, for his birthday-- the way they do for the living kids. That there wouln't be reason for them to think I should be over him by now. And suggesting it is a silly thing to think his birthday matters now that he isn't here to celebrate it anyway.

I wish people were making arrangments to come to celebrate his re-birth. His baptism. That they would make the trip anyway, just to wrap their arms around my heartbroken soul and tell me they remember him. They remember!

Remember

noreply@blogger.com (~plaid) — Wed, 15 Apr 2009 22:46:00 +0000

Tomorrow is Dominic's 8th birthday. April 16th. Two times eight is sixteen. April is the fourth month. Dominic is our fourth child. We have eight children. Two of them died. September 8th. Eight divided by two is four.

Each night we say prayer together as a family. We still pray to a God. Sometimes I don't know who He is. Sometimes I only hope there is someone really listening. Sometimes I don't even believe. But each night we say our prayer together as a family.

Some of our children have prayed the same thing over and over again. For years, it had been, "Our Father in Heaven, please help us remember Dominic." But then, they added, "Our Father in Heaven, please help us to remember Dominic and Bridget." Before I say my amen, I quickly amend their words in my mind: "Our Father in Heaven, please help others to remember Dominic and Bridget."

I know I will never forget them. Never. I hope my children will always remember them, too. There are things about their brief time with us that have faded. So many memories that are so dull and difficult to recall. Some have been buried in these years that have past. But I still remember Dominic and Bridget.

Two people who came to Dominic's funeral share his birthday. One of them even spoke at his funeral. I will remember their birthdays. I don't know if they'll remember his. But it is my prayer, sincere prayer, that they and the rest of the world will remember.

My mother called today. She didn't remember that July 18th is Bridget's birthday. I don't know if she remembered that tomorrow is Dominic's birthday, so I reminded her just in case. And then she asked if she should call tomorrow. I told her, "it would be nice if Dominic would be remembered." I don't forget that he died. I will always remember. Why would anyone think that they shouldn't talk about him, especially on his birthday? Why would they wish not to remember?

I wonder if this year my prayers will be in vain. Will others remember? "Our Father in Heaven, please help others to remember Dominic and Bridget."

Compassionate Friends is an organization offering support after a child dies. After Dominic died, so many people would ask, "How can I help? What can I do?" Sometimes I didn't have a reply. I found Compassionate Friends, and they had articulated the answers: "How Can I Help." After Bridget died, I shared this list with others in hopes they would remember her. Remember us. And there on the list, is remember.

Remember the family on important days such as the child’s birthday and death anniversaries. Send a card, call, or visit. Let them know you remember, too.

I have a son. His name is Dominic Angelo. He was born on Monday, April 16th, 2001. Tomorrow he would be turning eight years old. But he died. And I remember.

Easter

noreply@blogger.com (~plaid) — Sat, 11 Apr 2009 16:46:00 +0000

“If a man die, shall he live again?”
~Job 14:14

On Easter 2001, I began the day in a solitary walk. The day before had had troubling events. Difficult events. I needed to get out. To clear my mind. I walked alone that morning, to a nearby pond. I sat and watched ducks gliding. I listened to the sounds of the morning birds. I cried.

Later in the afternoon, I walked with a friend. She was seeking counsel from a religious leader about her difficulties in her marriage. She needed someone to watch her young son so she could get this counsel, undistracted. I walked back home, and realized that my body was acting as if it may be in the early stages of labor. I made arrangements to have our children cared for and left for the hospital.

I was indeed in labor, and stayed the night. And in the early morning of Easter Monday, Dominic Angelo was born.

Easter 2007, our children learned they would be having a new baby sister. The Easter bunny had put some little pink baby socks in the basket. And they asked who they could be for. Only a few months later, Bridget Lucille would be born.

She was premature and so little. Her tiny feet never grew big enough to wear the newborn socks.

Grief. The journey has seemed so solitary. Even though the anchor in my soul is securely fastened to the hope of our Savior. A testimony. I have felt so very alone. So alone!

As we listened last week to LDS General Conference, one message stood out. A message of Easter. The message of our Easters. Of a solitary walk...

"For since by man came death, by man came also the resurrection of the dead.

For as in Adam all die, even so in Christ shall all be made alive"
~1 Cor. 15:21–22

Lambs

noreply@blogger.com (~plaid) — Thu, 09 Apr 2009 00:31:00 +0000

He shall feed his flock like a shepherd: he shall gather the lambs with his arm, and carry them in his bosom
~Isaiah 40:11

When I finalized that scripture which we used on Dominic's headstone, it hadn't occurred to me that I might regret plurals. Lambs. Them. It hadn't seemed at all to me then that perhaps it could be a foreshadowing.

This past Sunday we walked down to the cemetery as a family. Just as you approach, on the corner across the road there is a small hobby farm. And several lambs had been born. We had stopped to pick some greens on the way, and the kids enjoyed offering their treats to the animals. I had to remind them that the newborn lambs might not be as interested, as their mother's milk was their source for food at this early age.

I have fed you with milk, and not with meat: for hitherto ye were not able to bear it, neither yet now are ye able.
~ 1 Corinthians 3:2

I noticed the two smallest little lambs stayed together. The one a little bigger seemed to be kindly watching over the smaller one. They really weren't that much different in size. How could I not think of my own two little lambs? I wondered if Dominic, only just slightly bigger than his little sister, was also kindly tending to Bridget.

After some time, we began getting ready to leave. And then I noticed a little lamb in the feeder.

It kept standing, as if to try to climb out, and would slip on its weak little legs and stumble back down. The sheep that appeared to be his mother came and laid down next to the feeder, but didn't seem to make an attempt at rescuing the little lamb.

Over and over again the little lamb stood, only to fall back down. I became quite concerned. I was very distraught each time the lamb fell, wondering if it would become too injured before it could be rescued. I thought about climbing the fence, but wasn't sure how the animals would respond to that. I didn't want to cause more harm, but I was very concerned about this one little lamb.

I sent my children to the door of the home nearby, hoping they were the owners of the animals. Fortunately, there was someone there who knew what to do. And the little lamb was safely rescued.
We were told that another lamb had actually been trapped in the feeder and died, and that it was good we had thought to notify them. There were so many stories about each of the little lambs there, and we stayed a bit longer to hear about each of them.

One mother had delivered triplets. The first lamb came out wrong and died. The next two little lambs she delivered also died, and then the mother died, too. I could understand why that mother died. How sad it was to have all three of her little ones perish!

Another mother had twins. One twin died, the other survived. The mother was quite protective of the living baby. I could understand that as well!

Another mother had triplets, and though had only two teats to feed them was caring for all of them. All three little lambs seemed to be doing well.

Another mother had twins. When the first was born, she licked it clean and nursed it. The second baby that was born was rejected. Abandoned. The mother never cleaned it. And each time the baby tried to nurse, the mother would knock it away. I couldn't understand that at all! We were told it is very uncommon, but that it does sometimes happen. I asked what would happen if the mother kept rejecting the baby. It would be bottle fed. They'd have to get some milk from the mother, of course, because the baby would need the colostrum. Without that, it would die. Then after a few days they could get some formula for the baby to drink. It would be very difficult in the beginning, with multiple feedings each day. But as time went on it would be easier.

I thought about how I'd wanted Bridget to have my colostrum. How the hospital had not stored it properly and it had spoiled. How I was grateful I'd insisted that she breastfeed those first few days, so I knew she had had some colostrum. But had it been enough?

I thought of a mother's rejection. And how it was so uncommon. And I wondered what a little lamb could have done to have lost favor with his own mother. And I wondered what I could have done to have lost favor with my Father. Here on earth, yes-- but more, in the Heavens.

What man of you, having an hundred sheep, if he lose one of them, doth not leave the ninety and nine in the wilderness, and go after that which is lost, until he find it?
~Luke 15:4

And in the absence of a Father, would the Shepherd go to the little lamb? Would He put in the effort necessary to rescue the rejected lamb? Rescue. Foreshadowing, parallel. And I didn't know that within a couple of hours, I would hear those words. About a sheep, a lone animal, stuck on the side of the mountain. And where was the shepherd to rescue her?

We continued on to the cemetery. The kids enjoyed "petting" the little lamb on Dominic's headstone. And I began to wonder what Bridget's headstone will be like. And I hated thinking that there is still another headstone to be made for yet another of my little ones. It had been so important to me that Dominic's headstone have a little lamb on it. Would Bridget's have one too?

We decorated Dominic's and Bridget's graves with some bright flowers, Easter baskets filled with eggs, and some homemade Spring decorations.

They seemed to compliment the other garden decorations we have there.

The wolf also shall dwell with the lamb, and the leopard shall lie down with the kid; and the calf and the young lion and the fatling together; and a little child shall lead them.
~Isaiah 11:6

Not far from where Dominic and Bridget are buried, there is a statue of a Lion. I chose Dominic's burial place partly because of that Lion. Because my little lamb would be buried near there, and I would look forward to the day when the Lamb and the Lion would dwell together, so I could go to hold my little son again. I hadn't thought there would be more than one child to claim.

I went to the hospital in labor with Dominic on Easter. He was born early in the morning on Easter Monday. I had even wondered about naming him Pascal, "Easter child".

Those little lambs. Two little lambs. The Lamb. Lamb of God.

For all the rest shall be brought forth by the resurrection of the dead, through the triumph and the glory of the Lamb, who was slain, who was in the bosom of the Father before the worlds were made.
~Doctrine & Covenants 76:39

Foolish

noreply@blogger.com (~plaid) — Wed, 01 Apr 2009 18:37:00 +0000

I don't know what else to do. I am just struggling to focus, concentrate. I vacillate-- doing okay, doing poorly. Trying to hold it together. What a fool I am, to spew it all out. The thoughts going faster than my fingers can type, and the words will be so disjointed. There is surely too much exposure. Too much that could be used against me. And it scares me and I worry that it will be somehow turned against me and I will be full of regrets. But in this moment, it is so consuming, and I just feel too overcome with it and want to let it escape somehow.

A fool uttereth all his mind: but a wise man keepeth it in till afterwards.
Prov. 29: 11

I feel like I'm there again. In that store again. Feeling like I'm going to pass out, but I don't. Feeling like my lips are tingling. It isn't really happening! I'm just imagining this! It's just not real at all! I've fallen asleep on the mattress and I am having a horrible nightmare and I just have to wake up! I have to calm down. I'm making a scene over nothing. She's fine. She's okay. It's okay. It's going to be okay! It's okay! It's NOT OKAY! IT'S NOT OKAY!!
Bridget, please don't die! Please, Bridget, Please! PLEASE!!!

It isn't okay! It isn't okay! I am stuck there. Stuck in it isn't okay, and I am trying to pull myself together and make it okay somehow. It is what it is! I have to accept this! I have to make it okay somehow. I have to be okay or I'll never see her again, never see Dominic again. I won't be worthy enough if I'm not okay. If I don't make it all okay somehow. I am just letting my family suffer because I'm so stuck in that place. Can't get out of that place. I can't make it STOP!

This is supposed to be a test. God is trying me. Or he is letting Satan try me? Like Job, right? Let's see, God. She managed somehow when you took Dominic away. But she won't still care about you if I take her precious Bridget, too. She'll stop believing in you, God, if you let me take her away and take away any hope of understanding. She won't still praise you God if you let me take her on that day, that Saturday, September 8th. Just let me prove to you God. She'll go tragic. She'll turn her back on you.

I don't know. I hate God, and in the same breath He is all the hope I have left. I don't know what to say about it all. I don't know what to say to Him about it all. He knows it all. He knows! He knows it won't be okay! Please, God, PLEASE don't let Bridget die, too! This happened with Dominic. I can't bear it! I can't do this again, God! Please don't make me bury anther child! Please, you have to save her! PLEASE!

And why aren't you listening? Is this a closed book test? I look in that Holy Book for the answers, and I am not finding them. Seeing them. I just don't know what I am supposed to do. What are the answers?

It isn't right. Dominic should be getting ready for his birthday. He should be having interviews and arranging a time for his baptism. My mom should be making plans to come here. Because you know, I'm not important enough to come visit unless there's some religious ceremony attached. And where is he? Where is my little son? My little froggy? So many times I read of those whose little one was taken in death, who feel their love and presence near. And I don't. I don't! I don't know where you are, my little son! I don't know if you still love me or if you hate me because of how I failed this test! Failing so miserably. that I'm not worthy at all to have you near me!

I hate that anyone at all ever even had a thought that I could hurt you. But that they openly accused me of such horrid things! I know how much I did everything I could to protect you, keep you from any kind of harm. And I know I never even had the thought to ever hurt you, let alone cause any harm to you. And I know that God knows that. But it hurts so deeply, so deeply, to have that thought be a part of all of this. And why God hasn't sent the answers to prove to the world that it isn't even a possibility. Why he lets there be any doubt. Does God hate me that much, really? And then to have it become so much a part of my worry now. That if somehow I cannot protect your siblings the way I couldn't protect you-- in all the power I had I tried! And it wasn't enough. It wasn't enough to save Bridget! You were in my arms! You were both right here in my arms and I couldn't keep you from slipping away! I couldn't keep my grasp on you! And if I was so powerless, how am I to keep the rest of us safe? But if I don't, I will lose everything! EVERYTHING!

I thought God loved all of His children. I thought he cared so deeply about us all. I thought He was no respecter of persons. But then there is such an outpouring for this person or that. There is the answers, the miracles for them. Is God not mindful of this little sparrow, fallen little injured. So hopeless, when I had been so hopeful.

I am just a little girl again. I am sobbing. Sobbing so terribly. My daddy is gone. I don't have anyone in this world who loves me. And then there is my mother. Somehow in her arms. She rocks me as I'm sobbbing. Sobbing. Just rocking me and I don't know how to make it stop, but I am so grateful for her arms around me. For the rocking. But I'm not a little girl. And my mothers arms grew too weary of me long ago. So annoying to her. Too much for her. No more arms to wrap around me.

How can the God understand? His son died, but He was resurrected only three days later. And His son is known throughout the world, through generations of time, through all eternity! Every tongue will profess His holy name! But who will remember Dominic? Who will remember Bridget? Who will remember.

The sweetest little ones. My sweetest little ones. But are they still mine? Did I lose them because I am somehow not worthy? How it stings to hear that I am such a good mother. It is supposed to be a compliment. I know that. I know it was meant as a compliment, but if I am such a good mother, then why am I here in such paralyzed depths, not invested in those little ones whose sweetness is here. In the now? And if I am such a good mother, then why did Dominic leave? Why did Bridget follow him? Why would God take them away? To test me? To prove me?

I don't know what the answers are. I am failing. Failing miserably. I am so upset. I just wish I could go right now and be cradled. I don't know where to go, but I just want to be held. I want it to be okay. It's going to be okay! It has to be okay! It's not okay. It's not! It's not okay!!

I feel utterly embarrassed. I know I should be over it. I know it shouldn't bother me like this. So what? Dominic died. Bridget died! Who cares? We all die, and it's not like they were important people anyway. It's not like anyone really cares. It's not like they meant anything to anyone. Who cares. You have six other kids, so what's your problem? I mean, come on. They were just babies. And you brought it on yourself. If you didn't tempt fate by going on to have another kid. You're so ugly anyway. You should have known from the start not to have kids. Because there is obviously something wrong with you and something like this was bound to happen. You should have known better.

There are people in the world who are worth our sympathies. Our compassion. Our concern. You're just some stupid ugly person. Sorry, but deal with it. Get over it. Move on. You shouldn't even be imagining that we're even giving you this much consideration. We didn't even think about you in the first place. We wouldn't have taken the time to even say all these stupid things. You're just not important enough. Beautiful enough. Popular enough. Maybe if you would be more sappy and do the things that make us feel like you're one of us. Oh, maybe, we would care. But get over yourself, because we just don't even care. And quit wasting your time thinking we ever think of you.

So it's lonely. So it hurts. So I'm not sure what is real and what is not. But I'm very aware of what is real. I just want to believe I am not aware. Want to think I'm crazy enough not to understand. I just want to stay in that place. When all I had lost was Dominic. As if that wasn't enough! It was already too heavy. Too much! How could God do this? How could he take Bridget, too?

But He didn't take her. Maybe they are right. Maybe I forced her away, because I was too impatient and didn't want to wait for her to be born when my body was ready for her to be born. I was too reliant on the medical technologies to force her out and she wasn't ready. And she was mad at me for caring more about myself than what she wanted, so she went back to God. And maybe she is right. And I deserve to lose her. I certainly didn't deserve to have her. Such a precious, perfect little girl. No one on this earth was truly deserving of her. Such an amazing joy. And I did feel like I cheated the universe to have had the opportunity to hold her in my arms. And I wouldn't change that I had that chance, but oh how it is killing me now! And I wouldn't mind dying, but then I don't want to go and leave these other sweet children who I don't deserve. And if I don't deserve them, which I don't, because they are just as wonderful, then I am sure they are going to be taken...

I remember at Bridget's funeral. And remember how "she" had called me a murderer. And seeing her there. Almost smug, like she was glad that I got what I deserved. Because she would have wished this on me. Wished for me to lose my Bridget. Because she accused me because she wanted to hurt me, and she liked seeing me hurt. And she was happy about such a deep hurt being put on me. Because I deserved to hurt. I spoke at Bridget's funeral, and I remember talking about what I deserved, and not being deserving of the amazing children I'd been blessed with. I understand that. I know that I'm not good enough for them. And yet I have tried to be good enough. It is all I try for. I want to be good enough! But it is never enough. But I don't deserve this! I don't deserve this!

Stop

noreply@blogger.com (~plaid) — Sun, 29 Mar 2009 13:50:00 +0000

I have been contemplating whether or not to stop posting my thoughts here. The raw, uncensored feelings that flare up too often in this journey. I have been thinking about how so many people have taken the time to stop by lately, so many leaving comments. I feel overwhelmed when I think of the time that is given, especially from those whose time is so limited. And then I realize, really, all of our time is limited.

"Lord, make me to know mine end, and the measure of my days, what it is; that I may know how frail I am." (Ps. 39:4)

Yesterday was Saturday, March 28th. It has the same number of syllables as Saturday, September 8th. There are four syllables in September 8th, and four syllables in March 28th. Four times two is eight. Dominic is our fourth child. Bridget is our fourth daughter. Four times two is eight.

Stop! Stop! Stop! STOP!
My husband told me to stop saying these things. It is so irrational to think that because our friends who were there that Saturday, September 8th, with us in IKEA-- were coming to visit us that we we're somehow more vulnerable. That because I was planning another delayed birthday party like we had had that Friday, September 7th, when I was so distracted taking pictures of other people's kids that I have only precious few pictures of Bridget from that night... That because it was another Saturday with an [twenty]eighth... That because we still have an infant who just recently added another eerily similar symptom to those Bridget and Dominic both had... That because I am still nursing and... Stop! STOP!

Our friends did come yesterday. All of us who were alive yesterday are still alive today. We survived through it. Just like those September 8ths after Dominic died. I would tense up before, and feel relief afterward that we made it through another one. Although the first one after he died, we did have a drowning accident. We had been given tickets to a water amusement park (we had been at an amusement park, one with a water area even, when Dominic had stopped breathing) and I was reluctant to go, fearing for the date, for the similarities. But to overcome the irrational, you have to get through and prove to the universe that there isn't a significance to the date. So we went, and we lost our camera that day. Drowned. The camera we used when we captured those last moments with Dominic. But a camera is a thing, and we had survived. And just as we had pushed through those thoughts each September 8th, I told myself to push through that first Saturday, September 8th after Dominic died. But then Bridget stopped breathing, too. Or did she? I am imagining this! It can't be real! Stop, Dominic! Stop telling her to go with you! Stop! Stop! Stop! STOP!

Our friends were over yesterday. I had to stop and look at their youngest daughter. Growing so much. How her dad had told us when we had just kissed Bridget before they life flighted her away that their little girl had been so ill just after her birth and that it was a priesthood blessing that spared her life, and that he believed in miracles. And here was their miracle, but where was mine? What did my little girl look like now, and why wasn't she here to play with her?

I didn't want Dominic to stop breathing. Why did his heart stop? I didn't want Bridget to stop breathing. Why did her heart stop? So many things connect, but there is no constellation to what caused their deaths. But that Saturday, September 8th. And that Saturday, September 8th. My world came to a stop.

A stop sign has eight sides. Stop has four letters. Four times two is eight. Two times, their hearts stopped. They stopped breathing.

I have been contemplating whether or not to stop visiting other blogs. Especially those with organ donation and transplant topics. It is so difficult to think there are people who are waiting-- I know, not wishing-- but waiting for another life to stop so that their own can keep going. And just what makes one life of more value than another? Just what makes it more important for one to live while another dies to give them that chance? And if we are praying for someone to receive a new heart or kidneys or liver or... are we not beckoning the heavens to come and take a loved one away from another family? Leaving another family in the tenderness of grief the way my little family is. And what of us who had thought to "give the gift of life" through organ donation, but could not because the underlying cause of the imminent death was unknown? And the sting that it leaves when it is implied that we were not caring enough, generous enough to give such a gift. That we were selfish, and that our children are not somehow still living on in another person like their loved one is. No one would stop to tell us how our children's deaths gave them the chance for life.

I have been contemplating whether or not to stop posting my thoughts here. The raw, uncensored feelings that flare up too often in this journey. This blog was never intended to be anything except the receptacle for the difficulty that weighs on me because of the deaths of my two children. Because of all those similarities, the things that connect, but the disconnectedness of it all. It was meant to be my outlet. When I post here, I am more pointed about the kinds of things I bring up. Because it is intended to be where I spew the ugliness out, scream that primordial scream into the universe, the kinds of things most likely to come up in grief. And grief is not really a cheerful, uplifting, happy thing.

To put it another way, when I take my car to the mechanic for repairs, I don't spend my time telling him all the wonderful things I like about the car. I don't go into the details of all my other vehicles. I point out all the flaws and problems I am having and hope to get the repairs done as quickly and with as little expense as possible. When the mechanic is done, I focus on other things.

To those who stop by: Don't expect much of anything else. I think it would be good to keep that in perspective. You might get the wrong idea about people if you use only the posts on a blog like this to paint a picture of who they are. And yet, those things I post here are a part of who I am. So when you stop by, I appreciate that you have been gentle.

Seasons

noreply@blogger.com (~plaid) — Fri, 20 Mar 2009 22:10:00 +0000

It almost seems cruel how quickly the summer turns to autumn, turns to winter, turns to spring. Each ending bringing anticipation for a new beginning.

Last year, it was Dickens' words that spoke of our hearts' desires. Hope.

Heart full of sorrow.
Hope for tomorrow.

I reflect back on all of the yesterdays that were to be our tomorrow. The days have too quickly passed by. And I glean through them, finding the moments that have helped us to endure. Giving us pockets of air to catch our breath inside the intensity of all of it.

I read over so many words I wrote. About miracles and how desperately we still needed them even after the one we wanted most could not be granted-- the little miracles of kind acts, and the presence of loving, caring, compassionate people who would let us be wrapped in their arms.

I am an impatient soul. I have good reason, though. And I know that there are others who understand.

"A person in need cannot wait to be comforted. His time is today: his pain is now; his loneliness is immediate. And any would-be helper who delays a compassionate act may find that he has come upon the scene far too late to justify anything more than a wry smile of hurt indifference from the object of his belated concern." (emphasis added; JoAnn Jolley, “What I Learned about Compassion,” Ensign, Mar 1980, 26)

How can it be that time races forward, and still goes so slowly to make the heart ache for an eternity ahead that seems so out of reach? Too long until we are reunited with our dear loved ones whom we just miss so terribly?

Time is a thief. I wrote of Time even before I knew that Bridget would come to fill a measure of it. When my heart was still tender with the grief of Dominic's death:

Father Time
(Thursday, February 09, 2006)

"And can it be that in a world so full and busy, the loss of one weak creature makes a void in any heart, so wide and deep that nothing but the width and depth of vast eternity can fill it up!"
~Charles Dickens (Dombey And Son, Chapter 18)

Grief is an interesting journey. It is certainly a very personal thing. Sometimes univeral. There are so many euphemisms. Sometimes I begin to believe that time will heal. That life goes on. There is some comfort and some truth in these words at times. Sometimes I look back and I think about how much has changed. I wonder if I'd be aware of the distance in time from then until now had we not had to say goodbye.

In grief, the passage of time has been an insult. Four years ago I was grieving. It was okay for me to have those feelings, because the time that had passed since we buried my son could still be counted in single digit months. I recall these days four years ago. The mockery of time burned the memory of those days into my mind. Time was heavier since I last held my son than all the days I had to hold him. Slipping away from me was another chance for life.

In grief, the passage of time has been an enemy to my memory. How I wish my recollection could be as crisp as the bitterness. The sharpness of each moment diffuses as a new moment passes. Another euphemism. It's only a moment. Only a moment I wish I could have again, and remember. Yes, I have pictures, and there is reminiscence that is sweet, yet the memories are sometimes bitter.

In grief, the passage of time has been so bitter. If people hadn't already turned away from their discomfort with death, the bitterness was their justified retreat. It was time to move on. How I wish the strength of the sweetness from those memories could prevail. I have a sense of the sweetness. It is what I long for. It is what I miss. And it is why I grieve. I don't have, I can't have, what it is I had and what I want. Who was there to mourn with me? Well, time had gone on and their lives had gone on, and it was about time for me to move on as well. Bitterness was a friend when I had none. A shield to their unwilling rejection. Oh, yes, they pitied me. They could feel the sorrow at a distance. They just didn't want to be weighted by it. Weighted by me.

It's been four years. Four years, four months, three weeks, and four days. It's not okay to feel these things now. Intensity weakens. That is true. Time is what robbed me, and it has never healed me. Softening comes with recognition that expectations won't be met. That time is only a lower law, preparatory, that will be swallowed up in eternity. Father Time has his seasons, but The Father is endless. My heart remorses for the love that I should have felt so intensely as to sear every moment into clear recollection, that I was too distracted from feeling. Oh, yes, it was there. So deep and surely there.

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.
1 Cor. 13: 12

I will know that love again. For this moment in time, I will endure. I will carry on. I will grieve.

Today it has been eighteen long months from when we buried our little Bridget. Dominic was buried seven years and six months ago yesterday. Last year, Spring came to us on March 20th. And again, this year, Spring arrives the same day. How strange when things are so different and still the same.

I am still waiting for a new season. One of more glory than we have ever known here.

To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
A time to love, and a time to hate; a time of war, and a time of peace.
~Ecclesiastes 3:1-8

Saints

noreply@blogger.com (~plaid) — Wed, 18 Mar 2009 16:14:00 +0000

Yesterday was Tuesday, just like it was the first time I spent Saint Patrick's day with slothdog. Tuesday is the only day of the week that has seven letters. Patrick has seven letters. Patrick is a Saint. Bridget and Dominic have seven letters, and Bridget and Dominic are both saints.

I have been thinking a lot about the last seven years. It was seven years ago that we started our first grief support meeting. That very first night, we ended up in the emergency room. My husband had suddenly jerked back in his chair, fell forward, was unresponsive, turning blue, clammy, sweaty. He looked just like Dominic had looked that Saturday, September 8th. I was panicked, but we were in the hospital and medical help came quickly. They checked his pulse, and I was relieved to hear he had one. But only about 30. Too low. Finally he was responding. Couldn't move or see well...

The Chaplain was there in that meeting, and he went down to the emergency room with us. It was odd to be there where Dominic had been admitted as a trauma patient just six months before. We hadn't been in the emergency room with him. It was life flight that had taken him there and he was admitted to the PICU before we even arrived. But there were some familiar faces in the crowd in that emergency room, and it was scary. I remember the Chaplain asking something along the lines of, "do you always think worst case scenario?" I don't think those were his exact words, but I remember stopping to think because I didn't realize I was coming across as that worried.

The emergency room was in the children's hospital, and when they failed to find any concerning causes, they sent us over to the adjoining general hospital to be checked out by their ER. After a long night, there was nothing found to cause the event (one he had had similarly as a teenager, where they chalked it up to a seizure even though there was not any conclusive evidence that is what had caused it). It was decided he had simply fainted due the intensity of emotions.

I remember that night only in pieces. I remember telling the group that I didn't feel overcome with grief. That I felt sustained by faith and that we were there more because our kids seemed to need the help. Those weren't my exact words, but I remember stopping myself in my thoughts after I shared that and wondering if I hadn't been deceiving myself. But that night proved that we had a lot of support. One of the people in the meeting was someone we knew from our student days, and she was able to take our kids for us while we were in the ER. My sister came to drive us home (since I was tired, it was dark and I don't drive well in the dark, and both my husband and I were too stressed to drive). And when we arrived home, our doorstep was covered with canned goods, toilet paper, and other necessity items -- since my husband was now in his fourth month of unemployment this was a welcomed gift.

Seven years ago was such a difficult time. Yet until that night, we felt a lot of love and support in our struggles. But that night was like a turning point. The effects of the miscarriage I'd had the month before, the unemployment, mourning Dominic, and watching as my husband's appearance had taken on the same appearance Dominic had that had resulted in death just seemed to overwhelm my mental capacity to cope.

But I think that the biggest reason things got harder was that prayers in our behalf had started to subside. The hour after death, when the comfort of the Spirit and good friends and loved ones comes in to attend you, had passed.

I've been thinking a lot about these past seven years, and the past year and a half. Just how is it that we have gotten to where we are.

I had participated on a message board for infant loss where a post was made titled "Bite Me". It was a post where we were invited to vent our frustrations with all the things people say and do after your child dies that are insensitive, mean, rude, annoying, etc. So, for example, if your doctor had said, "you're young! You can have another one", you could post "Bite me, Doctor X, who told me ...". I remember having a lot of things come to mind that I could post about. People sometimes just say and do the most hurtful things, mostly when they are trying to be helpful.

And then I thought how I would much rather write those things that people had done or said that are helpful. And I tried to think of how to express these saintly kindnesses-- what could I title the post in contrast to "Bite Me". My thought was "Bless Your Soul".

I've always meant to sit down and write that post. But I no longer go to that message board. But those people who have made the effort to offer support to me and my family when so many others have abandoned us are truly saints to us. I know I cannot list them all, but I want to post a few who have been very significant, answer-to-my-prayers saints:

♥

Bless Your Soul, Debra C. You were not a welcome friend in the beginning. When you called just after we left the NICU with Bridget, I thought you were only assigned to us because I had caused such a stir there. I thought they assigned you to us to see how likely it was we would sue, or for some other liability reason. I still don't really know why you were assigned from a business sense. But I feel that perhaps, just maybe, you were one of those who were chosen when the Lord pleaded, "Behold thy mother!" Seeing how He loved me and knew how troubled I would be when I would behold my little one, then have her no more. He found someone who would from that hour, would take me into her own heart.

I've never met you in person. I know you came to Bridget's funeral from the note you left for us. But you have done so much to help. Because you are on the insurance side of things, you were able to help sort out all the claims for us. And when we were faced with the ambulance bill for Bridget, the same bill we had when Dominic died that had caused so much distress, you did what needed to be done to take care of it so I didn't have to like I did with Dominic.

I've spent hours and hours and hours on the phone with you. Not because I was calling, but because you felt like it was time to check to see how I was doing. And you didn't just call and tell me to let you know if you could do anything. You DID something! You took the time to let me ramble about the same things over and over again. You didn't try to correct me, or convert me, or...

Perhaps our friendship started as an assignment. But when the assignment ended, you still found time for me. You still worked with the insurance to help things be as smooth as possible with all the overwhelming medical bills side of grief. And you still call me, and let me ramble. It seems you always call when things seem the darkest, and you give me the chance to feel loved again.

Bless Your Soul, Debra C. You are a saint to me.

♥

Bless Your Soul, Allyson C. I don't always appreciate having your friendship. When you found out you would be able to adopt your little Brigham, I was so happy to think that we would have our little ones to raise together. I didn't share my news of my pregnancy with Bridget, but I knew she would be born shortly after your Brigham was going to arrive. I still remember how you came to our home the day before Bridget was born, and offered to let me hold him. How I held him in my arms, and a certain feeling of peace came to me. I'd been feeling uneasy because of the complications I was having with my pregnancy, and knew I was going in the next morning for an amnio and possible delivery. It was so nice to have had that moment before Bridget arrived.

I was excited to finally share her with you. And you seemed so enthralled! It meant so much to me to see your joy for our family. I enjoyed those few weeks we shared of raising our little ones together. I remember the phone call while I was folding laundry, and you reminded me to get out Bridget's clothes to make sure she can wear them before she outgrows them, because they grow so fast.

I sometimes find your friendship difficult now. We were supposed to both have our children grow up together. You still have your Brigham, and I don't have my Bridget. Perhaps it sounds so cruel to think that it is hard for me to see him sometimes. It would be harder, though, for me if you didn't have him in your life. So it is bittersweet. I love that he is still growing and learning and in your life, but I just miss that we aren't sharing that experience anymore.

But even with that awkwardness. You are a friend who was there for me before Bridget was even born, and you have been here for us since her death. I have called you for favors and you have made arrangements to help. And there were times you have been an answer-to-my-prayers friend, who just knows when to do something for us even though I hadn't asked.

Bless Your Soul, Allyson C. Because there have been so few saints who have stayed with us through all of this. And so the load that is carried is divided to fewer arms willing to bear it. It makes it so much heavier for you, and yet you are still willing.

I sometimes doubt your motives. I know your callings through all this have put you in a position where you have essentially been assigned to help. Perhaps it is only a response to duty, obligation to which you respond. But I don't sense that is it fully. And even if it was, there have been so many others who were assigned who did not follow through. Whatever the motivation, we have needed you, and you were there.

♥

Bless Your Soul, Slothdog. This is a personal one, a selfish one. You are the one and only reason our family has not been dashed to pieces since Dominic and Bridget died. When I stopped making dinners, and you started making them instead. When I couldn't go to the grocery store anymore, because it hurt too much not to have the cute little ladies stop me and tell me how beautiful my baby was. You didn't begrudge me and you started doing the shopping. When it overwhelmed me wondering how we were supposed to pay all the expenses without a job, you took over the finances.

In all of this, I wish I had been stronger for you. I want to be stronger for you. I want to be stronger for our children. And I am so very weak. You don't begrudge me, and you carry the load. You help the kids get up in the morning, and help them get to bed at night. You remember to check on their school work. You pack their lunches. You read them stories. You play games with them. And most of all you encourage me when discouragement weighs me down. You are gentle and patient with how I struggle, wanting to do so much more but only making small steps forward every day.

Even when a Heaven seems impossible, when God seems a matter of fiction. You have continued to pray with us. To read to us the scriptures and counsel of a prophet.

It seems so unfair that someone who is struggling so much in the same depths of grief is left to carry so much of it on his own, and then to make up the difference for his wife's lacking, too. It amazes me how you carry on even with your own heartache.

The complexities of it all, you are living it. But, Bless Your Soul, Slothie, for enduring it and making all the difference for us.

♥

There are two saints I am looking forward to being with again. And my yearning, aching desire would overcome me and I would speed forward into the eternities to try to soothe my soul with the chance to be where they are now, except that there are those saints here who find the way to bear with me. Bear for me when I cannot bear my own.

Bear ye one another’s burdens, and so fulfil the law of Christ.
Galatians 6:2