Stop

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

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

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

Isolated

Sometimes tears are not enough. Sometimes I cry in words. Forgive me while I shed some very heavy ones.

This past couple of weeks has been emotional chaos. I feel devastated as I learn of another family who didn't get the miracle they were looking for, and held the funeral for their little Gracie in the same chapel where we had Dominic's funeral. I have felt hopeful for another family who learned about cancer when no one was even looking for cancer that is hopefully still isolated in the stomach-- hopeful that the surgery my friend will undergo this week will be successful for removing all the cancer. I feel grateful for the kind comments and listening ears of those who have found my heart-pouring recently, many from the post Grammy left on her blog. I have felt worried for people I have only recently learned about, like Paul Cardall who is waiting for a heart transplant and hoping to live to raise his daughter, Eden-- and Jan who is terminally ill and hoping to make the most of her time with her family before she dies. I have felt inadequate in responding to those who have commented on my blog, like Kendalee who has also lost children.

Yesterday was seven years and six months from when Dominic died. In only one month from tomorrow, he would be turning eight years old. This is significant to my family because we believe that at the age of eight a child is accountable, and has the capacity to choose to enter into the waters of baptism on his own accord, and make sacred covenants that will prepare him to be reunited with our Heavenly Father. When Dominic was an infant, in his blessing was the mention that he would be baptized. But we believe that children who die before the age of accountability, or the age of eight years, do not need baptism.

Sometimes people try to console this seeming contradiction between inspired promises and no need for baptism with semantics. I have my own dance with semantics that allows me to reconcile it all. But sometimes it still doesn't make sense.

Today it has been one year and six months since Bridget died. To many people, that might seem like so long. Long enough, maybe, that they would think I'd be healed. Yet I feel so fresh and raw in this moment. A very long year-and-a-half-moment. And yet not long enough, because I am still waiting to hold her again.

When Dominic died, it was such a difficult experience. Grieving is a word to explain how we respond to unwanted changes. With all changes, there is a transition, an adjustment. And when it is unwanted, there is always something that lingers that wishes it could have been the way it was supposed to be. I had come to that place of acceptance, and though I didn't like it, was coping.

There were still those blisters that would come up, like anniversaries or birthdays or seeing another child his age. There was still the worry, not naive anymore, about keeping our other children safe. But he died from an isolated case of Infant Botulism. It wasn't anything that our children would become ill with after their first birthday, and I knew what to do to avoid it with our infants, and what symptoms to watch for, just in case.

The worry I had with Bridget was disregarded. Even I was trying to believe it was just intensified because of my experiences. I wonder if she would still have died if someone would have taken me more seriously and done something for her sooner.

But she died. I still sometimes don't believe it, but she died. What was supposed to be some isolated cause of Dominic's death was not so isolated now. Two of my little ones snatched away, and this time no explanation. The answers we had before were taken away.

In my emotional chaos I have felt bitter. I feel angry. I have felt something of resentment. In all the situations that make my heart swell in response, bring my compassion to the surface, and move me to DO something. In all of them, they have a diagnosis. They have the answer as to what caused the death, or what is threatening death. They have a plan of how to proceed. But we do not have that in our family.

It is difficult for me to hear how "the hand of God" intervened in time to give a family a chance to fight disease, or to provide the comfort and caring and compassion that a family needs, or... does this mean that God's hand was stayed from my family? Because He did not and has not yet revealed what it was that caused Dominic and Bridget to succumb? That He did not warn us in time? That He let us wait in the hospital hoping He had a different plan than what the doctors were sure was coming? That others have not been inspired to action in our behalf? That we have children who have concerning, eerily similar symptoms to those Dominic and Bridget exhibited before their deaths, but all the medical world cannot find anything to offer an explanation?

And so often I see so many people responding to others needs, even when no one has asked or revealed their needs. I remember going to our neighbor's home on Katrina's first birthday, October 11, 2003. She was born and died the same day, so it was also their first "angel day". Katrina's mom made a comment about how many people had been a part of their day, and said, "you know how it is". But I didn't know. Even though we had more support after Dominic died than with Bridget, on his first birthday, and his first angel day, there was only a few people who made mention of it, let alone were a part of it. And on Bridget's birthday, and angel day, we were painfully abandoned by the outside world. We pulled together as a little family the best we could. But we were so isolated.

I don't understand why we are asked to endure the kinds of experiences life has given us. I don't understand even more why we are asked to do so with so few people in our lives who are willing to care. The deaths of Dominic and Bridget, while certainly the deepest, are but a part of the heaviness. So much preceded and so much has followed that weighs us down. We are so very weary.

Perhaps on a day when these words do not fall so quickly from my soul, when the tears do not fall so freely from my eyes. When it does not sting so much. I would like to write those things, isolated moments, that have made all the difference in this journey. It is not that I am ungrateful, or unaware of the kindnesses offered in our behalf. But the strength of all of those who have been willing to mourn with us seems insufficient to bear all the weight. At times it is crushing. I feel very akin to Longfellow, as he wrote his tender feelings about the tragic death of his wife:

"How I am alive after what my eyes have seen, I know not."

I am so very glad to have this place to shed these words. I often refer to this blog as my "outlet". And I have appreciated the kind words offered in return. The chance to share my sweet children with the world-- yes, a mother's pride-- is a gift. And though I am grateful for those of you who are a part of my journey even at great distances, I still crave the kind of compassion that comes from contact. Even just a friend to come and spend the time to look over the scrapbook I made with Bridget's journal and pictures, and maybe even shed a tear or two for what that little book represents. It seems it is only the usual comfort and support that I yearn for. I don't know how to sign up for the kind of outpouring that comes with other people's losses. The kind of support I've tried to offer when there is someone in my life going through these kinds of struggles. In this world of emotional choas, I feel frustrated. I have felt unloveable.

I love the whole sermon, but one part of it comes to mind right now:

"Yes, we have unprecedented mass entertainment and mass communications, but so many lonely crowds. The togetherness of technology is no substitute for the family [and friends]." (Neal A. Maxwell, “Plow in Hope,” Ensign, May 2001, 59

It is my hope that those of you who come along with me on this journey from a distance will find a way to reach out to those who are in your own lives. To be with those who need you. To mourn with those who mourn. I don't know how to motivate people in my life to be that for me, for my family. But maybe, perhaps, if I can somehow inspire someone to be the someone who will make the difference for another person struggling, my words will not be completely vanity and vexation.

Threads

It is just so strange to me. Things go through my mind, and then somehow it all converges. I had been thinking of that song from my childhood. The one in my mother's music box. Then when our kids were playing the new game they received from their grandma today, they thought they recognized the song I had been plinking out on the piano, lamenting that google didn't do a tune search. I didn't believe them. They played it for me, and it didn't sound quite right. So they found a link to the song, with the lyrics no less. That is it! And the words written with the tune actually are much better than I could have come up with. I don't recall my mother ever knowing the lyrics. Don't know if she even knew the name of the song. So to me, it's just a sweet way to feel connected to the universe somehow. That it seems perhaps someone knew what I was searching for. And though my deepest longings cannot be fulfilled right now, it is a little tender mercy for now.

It's all because of you
I'm feeling sad and blue
You went away, now my life is just a rainy day
And I love you so
How much you'll never know
You've gone away and left me lonely.

Untouchable memories seem to keep haunting me
Love that's so true
That once turned all my gray skies blue
But you disappeared
Now my eyes are filled with tears
And I'm wishing you were here with me.

Soft with love are my thoughts of you
Now that you're gone I just don't know what to do.

If only you were here
You'd wash away my tears
The sun would shine
And once again you'd be mine all mine

In reality
You and I will never be
You took your love away from me.

If only you were here
You'd wash away my tears
The sun would shine
Once again you'd be mine all mine.

In reality
You and I will never be
Cause you took your love away from me, oh baby
You took your love away from me.

Funeral

During my pregnancy with Dominic, we finalized on a new home construction. Our first home was being built, and even from the hospital when he was born, I was thinking about all the details. When he was only six weeks old, we moved in.

It was a different world to go from student housing apartments to a home with all the walls our own. We looked forward to this new start of "real life". We'd looked forward to it for so many years.

We attended our first church meeting that weekend. I remember so distinctly how different it was in that congregation compared to the congregation we'd just left. Two things really stood out: they had actual young men who prepared and passed the sacrament, instead of Elders; and they had just had a funeral. It was so strange that an announcement had been made about a funeral. If it had been the novel of our life, I suppose some analysis of the text might have called that foreshadowing. Dominic's funeral would be the next one that the congregation would announce. And it would be only a couple months away.

I've been following a blog for a couple of years now of a medically fragile child and his family. Every so often, this blog posts about another child who has died. I can't help myself but to go to those families and offer and kind of attempt at "I'm sorry". A few days ago, another post was made. Another little girl was going to die.

This time the details brought so much up. She was at the same hospital where both Dominic and Bridget had died. The father briefly described their experience of having their family together, and blessings. Seemed so much like what we were doing not even a year and a half ago with Bridget.

Then a post of the obituary. I was just taken back. The address for the funeral was for the same chapel where we'd had Dominic's funeral! It seems such an odd coincidence.

I admit that I feel a bit of envy at the outpouring that family seems to have. And yet a part of me is so grateful that it is there for them. I hope with so much hope that their support will continue and that it will be a strength to them in the days, weeks, months, and yes, even years to come. If only every family who has to go down this path could have good friends and family in their lives, to mourn with them. Not only mourn for them.

When Dominic died, we'd only been in our new neighborhood a handful of weeks. Not long enough to really have made any deep connections. Yet it had been too long since we'd left the neighbors of our college days to still have the depth of connectedness we once had shared. We were in transition.

I often wonder if there is a God, and I believe there is. And if He truly was aware of all our needs, and I believe He is. And if He is in control of when a child is called home, and I believe He is. Why would He choose such a time in our lives? Why would He wish us to be lacking?

And yet, so many people did come to Dominic's funeral. Friends who were fading away from our lives resurfaced, and neighbors we were still getting acquainted with came. Even the pediatrician and his nurse who we had left behind made time to attend.

And as the days and weeks passed, there was still a watchcare for our family. Then my husband lost his job. It was just so awkward for people. What do you say to a family going through these experiences? A family who you don't really know anyway because they just moved in?

We'd already been going through difficulty with family. Things only got worse.

By the time we had Bridget, we felt very isolated. Still hadn't really had success with making new friends, and so much farther from the friends of our past. Our congregation had been redefined, even though we still lived in the same home. We were in transition.

I often wonder if there is a God, and I believe there is. And if He truly was aware of all our needs, and I believe He is. And if He is in control of when a child is called home, and I believe He is. Why would He choose such a time in our lives? Why would He wish us to be lacking? And why did He choose Saturday, September 8th again?

The circumstances only that much more awkward. Fewer people came to Bridget's funeral. But there were still many people who came. I was grateful this time for a guest book. I hadn't known about that for Dominic's funeral. People who I hadn't known had come were there, and I knew because they had left us a note in that guest book.

I look back over it all. And I wonder where did all those good people go? Jack Johnson's song seems an appropriate commentary, of people stopping to do their rubber-necking, but desensitized by being able to be removed from it all by watching it on what we lovingly call "the TeeVee". And perhaps there is something prophetic in the words of Matthew 24:12 "the love of many shall wax cold". But then why in John 14:18 are we promised, "I will not leave you comfortless: I will come to you." Where is the comfort in all of this anguish?

Master, carest thou not that we perish?
And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm.
And he said unto them, Why are ye so fearful? how is it that ye have no faith?
~Mark 4:38-40 (emphasis added)

Yes, I admit. I am of little faith. I am full of fear. I am impatient, wondering how long it will be before He will rebuke the wind and call upon the sea to be calm. And I feel comfortless.

I still try to cling so much to hope. The fire of my testimony seemed so much more stoked after Dominic died. We worked even harder to do the things that we felt would make us more worthy to be united again with Dominic. When we were forced to say goodbye to Bridget, we were still clinging to this faith. We left the hospital that morning and went to Temple Square. We held her funeral in the church meetinghouse where we had taken her earlier in the month to be blessed, and her older sister to be baptized. Holiness. Sacred.




And it seems to mock me now. Symbols of what is so good in this world, where people are taught to be even like Him. And those same people, professing His name. Taking His name upon them on their lips, as those young men give them the sacrament. Where are they now?

Forasmuch as this people draw near me with their mouth, and with their lips do honour me, but have removed their heart far from me
~Isa. 29: 13

And yet I still have an anchor of testimony. Among all of my questions, there is little if any of doubt. I have to believe. But I still often wonder if there is a God, and I believe there is. And if He truly was aware of all our needs, and I believe He is. And if He is in control of when a child is called home, and I believe He is. Why would He choose such a time in our lives? Why would He wish us to be so very lacking? And why did He choose Saturday, September 8th again? And why would he grant another family so much more outward love and support, while another seems quietly ignored?

That same weekend when Bridget was in the hospital, our congregation changed leadership. God is aware of even the little sparrow that falls (see Matthew 10), and so would He not also be aware of Bridget's dire condition? And would He not want for there to be less confusion of who would be there to help? If there is a God, and I believe there is. And if He is inspiring these changes, and I want to believe He does. Why would he choose this weekend?

I still lament that in those most difficult days, when we were so desperately trying to find a way to get our older kids to the hospital to see their little sister before she died, that we were told that no one in the congregation could help. And in despair I uttered, "we need more friends!" Only to be answered with, "no, you need more friends who don't work." As if we were of no consequence, second or third or farther down the list in priority of a vacation day that had to be spared for some other more worthy occasion. And somehow suggesting we really did have friends, but that our friendship was of less importance than a day on the job. Is this what a friend is? Would not a friend lay down his life (see John 15:13), let alone take a few hours from their schedule to help?

And how I wondered how God, being no respecter of persons, could have used me as an instrument when I had sacrificed my schedule to take others to the hospital in their hour of need, but there was no one here to reciprocate in our hour. And how I wondered, of these people who make covenants, who preach of sacrifice. Was this not a time to act? If I had been Christ, asking in this desperate time, would I have been treated the same?

Then saith he unto them, My soul is exceeding sorrowful, even unto death: tarry ye here, and watch with me.
And he went a little further, and fell on his face, and prayed, saying, O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt.
And he cometh unto the disciples, and findeth them asleep, and saith unto Peter, What, could ye not watch with me one hour?
~Matthew 26:38-40

And I feel so close to Him. Feeling as if His words are my own. My soul is exceeding sorrowful, even until death... if it be possible, let this cup pass from me.. not as I will, but as thou wilt.

Could ye not watch with me one hour?

Death

So much changed when Dominic died. Too many things to name. Somethings are just so impossible to even give a name to, because they are just too hard to describe.

Lately I was thinking about how I never go a day (probably not even an hour) without thinking about Dominic and Bridget. Of course, it isn't just because they died. It is simply because they are my children. What mother doesn't think all day long about her beloved little ones?

But there is one thing on my mind everyday now since Dominic died that wasn't always there: Death. Not a day has passed since Dominic's death that I do not think of death. It is a part of the journey of grief that is heavy. It is something that must be contemplated and explored. You wonder what does death truly mean. You realize in such a real way that none of us will escape it. And you consider the reality that there really is no time guarantee.

It's been over a year since our family attended church together. I can't go into all of the reasons for this. That's a private matter. But grief does have a way of changing people. It has a way of bringing out questions that don't have answers. Maybe never will have answers. Like why did Dominic AND Bridget BOTH stop breathing in my arms while I was nursing on the left breast, BOTH on SATURDAY, SEPTEMBER 8TH-- only six years apart!? What caused their deaths? So many unanswered questions.

So many of those questions about death seem to so much be related to questions about God and religion. Sometimes people try to quell the yearning for answers by suggesting you ought to simply have "Faith" and just believe God will take care of everything. Sometimes people quip something like, "I have a list of questions to ask God when I meet Him." And yet, there is just no satisfaction in these well-meaning suggestions.

When Bridget was dying, we asked for Elders in our church to come to give us priesthood blessings. I was particularly troubled with how I was going to survive losing yet another child. I couldn't imagine bearing leaving that hospital again without her. I knew I could summon the Power of God to keep this impossibility from happening. I remembered too well leaving after Dominic had died; passing through those double-doors. Seeing that phone on the wall where I would have to say, "this is Dominic's mom" and they would open the doors for me to let me in to visit our son. And all I wanted to do was to pick up the phone again and tell them it was Dominic's mom and be able to see my son again! I just couldn't bear to leave Bridget there, too! In that same PICU where I never thought I'd have to be again. I was desperate for God to intervene!

The Elders came to the PICU. They didn't know us, don't think they even knew much about us. They could see that Bridget was very ill, that she was closer to death than I could admit. I wanted to have hope that she could recover. I remember very little of the words that were said in those blessings. But I remember them telling me something about how the scriptures would be an aide for me. And although that seems like such a general thing to say, it seemed quite personal when it was said. And it made me feel like God really was aware of me and knew me personally to inspire these strangers to remind me of what I already knew to be a strength of mine.

I have poured over the scriptures looking for more answers. But at some point, I did lose my hunger for those words. They seemed to mock me. I would read and read and study and ponder and read and study and ponder more. And I would still be left so unsatisfied. There was no sense to be made of Bridget's death. Or Dominic's. No sense to be made about how we could have other children with similar symptoms, and no answers to what was causing it all. No answers to if we would be burying another child, too.

In maybe a childish response, I slowly gave up the feverish study of those scriptures. Not that I stopped reading them or pondering them. But it was like the relationship I'd had with them wasn't meaningful anymore. Instead, I found myself working out Sudoku puzzles (like I'd done while I was in labor with Bridget) to distract my mind from the terrible anguish. It was funny how those numbers could actually put some of the emotion on hold for me. I felt a sense of satisfaction that I could spend more time with those cubed numbers than with words supposedly from God, that were supposed to have some sort of power, but didn't have the power to change things for our family.

In a way, I resented those scriptures. The ones that had the stories where death had taken claim on someone, only to be forced away by God's power. I remember sitting with Bridget, reading through those scriptures, hoping to find the answer to how to make her whole again. Maybe we needed to sneeze seven times on her, like Elisha did for the boy in 2 Kings. I'd remembered how at my nephew's wedding, my sister had not thought it a big deal that she had mistakenly called Bridget "Tabitha". I was really hurt by her cavalier, "same thing, whatever" response when I corrected her. And I couldn't help but think that maybe that mistake was not a mistake at all, and that Bridget would be a "Tabitha" and be called back to life, just like in Acts 9 when Peter used God's power to restore life.

I hoped that the men who were relatives of people in our congregation would come to the hospital. And give Bridget a blessing that would heal her. Instead, they prayed for her in private. They didn't come at all.



The scriptures were a part of the hospital stay after Bridget's birth. I had asked for a list of the scriptures that are a part of the presentation at Temple Square near the Christus that last time we'd visited. As the tension grew in the NICU, I tried to find a way to focus on what was really important. I sat near her bed and took that list out. I wrote down each of those verses in order.

As Bridget was dying, I opened my scriptures near her bed again. That list was there, along with a study manual. Those words "Not My Will, But Thine, Be Done..." I kept trying to believe that it was His will that Bridget would be miraculously healed. That she would be an instrument in demonstrating His power on this Earth. I remembered how I'd been impressed to know that she would be a special needs child. But what if that was not His will?

Death is such a mystery still to me. It seems the enemy. I am sure to some it comes as a friend to offer relief at the end of a very long journey. But it is such a thief to me. It has taken so much away from me. Not only my sweet Dominic, and my beautiful Bridget. It has taken an innocence, ignorance away.

And as childishly as I resented those scriptures, in a child-like way I cling to a hope in the words that I remember from them, read from them.

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

I have to believe. I have to hope.

Butterfly

For whatever reason, the music box melody from my childhood keeps floating through my mind. Some little Japanese tune, so simple. I loved to sneak into my mother's room to open the lid of the jewelry box just to hear it play. Perhaps it is the innocence of youth that I am longing for, pining for. No. I am sure it is not my childhood I long for, but for the childhood lost of my two little ones. But whatever the reason, I can't get it out of my head.

I was thinking about how I wish I were a musician who could master the notes of song and pen some beautiful lyrics to go along with it. So that I could write a song for Bridget.

Recently, we received the latest CD from Eloquent which had a sweet mention of me and my husband. It wasn't the first time a dedication had been made to our family. Such a special gift was given to me when the band Intuition dedicated their song "Heaven" to Dominic.

And I guess I just wish that somehow Bridget could be as special. It's so odd for a mother to have to make things even between two children who have died. Illogical. And yet, it is just so illogical to me that they are not here.

So many thoughts go through my mind. Flutter in and out so quickly. I cannot grasp them fast enough. My mind clings to the melody, and the words seem to drop into each note.

You came into my life
and,
fluttered for a moment
and then,
flew higher on-
so much farther than I could follow!
Heart full of sorrow!
Hope for tomorrow!
Pray I'll hold you in my arms again.

While I was pregnant, I tried to think of the best name for our daughter. We were in the museum, and a display of a single butterfly caught my eye. It was a beautiful little blue butterly named Xerces. It was a name that sounded pretty to me. I put it on the list in my mind and then read more at the display. The Xerces Blue had become extinct. How sad.

I toyed with Xerces as a name, but never really seriously. But for some reason, butterflies seemed to still be a part of her life. The swing we bought for her, so much of her clothing. My favorites all seemed to have butterflies. Even the outfit she was wearing that morning. That Saturday, September 8th. There was a little butterfly.




It seems odd to me sometimes how life is so discordant and yet little things seem to somehow have been orchestrated. Or given some sort of foresight anyway.

I had taken to calling Dominic "froggy" when he was here with us. The nickname associated with a creature who is a symbol of metamorphosis. We had a little stuffed froggy that we had bought him at our trip to the zoo. We'd taken his three month pictures with the froggy, in his little froggy outfit I'd bought for him at gymboree. And now we use that little frog in our family pictures to represent Dominic who is still so much a part of our family even though he is not here.



When Bridget was dying, and it was clear there was no longer any hope she would recover, I was distraught. Distraught with excruciating pain. I cannot write it in words at all. But a simple little thing was really at the forefront-- her nickname had been "squeak toy" because her little hiccups sounded like a little squeak toy (and she was just so little). We didn't have any little toy that we'd taken pictures of her with to use to represent her if she wasn't here any more. How could she go when there was nothing at all to cling to?

As we were struggling with having to go through this again, the hospital put up a little pink butterfly just outside her room.



It seems so silly, perhaps. But what a surprise it was to find that the little bear that we found for her in the gift shop the day before actually was a squeak toy! We use that little bear now to represent her. And though I still think of Bridget Bear, and "squeak toy", I also think of Bridget whenever I see a butterfly. A creature who is a symbol of metamorphosis. And I think about how that little butterfly had become extinct. How sad. How terribly sad.

After Dominic died, a tree was decorated in honor of him and donated to the Festival of Trees to help raise money for charity care at the hospital where he had been flown to after his crisis event. I've often wished a tree could be decorated for Bridget. And I guess I just wish that somehow Bridget could be as special. It's so odd for a mother to have to make things even between two children who have died. Illogical. And yet, it is just so illogical to me that they are not here.

When we were at IKEA with Bridget on that morning. That Saturday, September 8th. We were there shopping for her first Christmas. Some of her gifts I'd already purchased and put away. But the gifts we'd intended to buy that day we left unpurchased. I've often thought about donating the never-used-and-still-new items we'd bought for Bridget along with a tree decorated for Baby's First Christmas.

But lately, I've been thinking of a different project. I'm just not sure I am ready to part with Bridget's things. Perhaps a pine tree, decorated with butterflies. "Pining for Xerces Blue".

It seems so silly, perhaps. So many thoughts go through my mind. Flutter in and out so quickly. I cannot grasp them fast enough.

The Butterfly counts not months but moments, and has time enough.
~ Rabindranath Tagore