Thursday, March 28, 2013

Reminded

Easter always reminds me of Dominic. It would have even if he had never died. I went into labor on Easter. Pascal was on our early list of names to consider for him. He was born early in the morning of Easter Monday.

This year Dominic would be turning 12, which is an important year for boys in the LDS Church - as they are then old enough to become a deacon and begin Aaronic priesthood responsibilities. Our youngest son is going to be 8, which is the age for baptism.Our oldest son is a Priest and so able to baptize, and could have conferred the Aaronic Priesthood on Dominic and ordained him a deacon.

It is just sort of an extra recognition of what isn't to be. It makes me sad. I usually get a little distracted by these sorts of feelings this time of year. It just seems a little heightened with the way things are right now.


A friend who helped us when Dominic was dying, and then died, had lost a son a few years earlier. They learned he died from a mitochondrial disease, which is what is believed our two children died from, also. Recently, our friend's little girl was diagnosed with the same condition, and she will only have a brief life here with them. It is so hard to know that their time together is limited. Seeing their struggle with it brings so much emotion and questions and just a lot to my mind. I wish I knew how more to help them through this. And I also just wish it wasn't there, selfishly, because it magnifies so much the feelings I have of losing my two little ones - our time with them even more brief, and without warning that they would be taken. And still no clear answers of what caused their deaths.
 
I've really been struggling with why God has answered prayers of others who ask to have some of their struggles lightened while they bear through some very difficult things. Why does he grant that to them, but in my pleas to know how to help Bridget and for help from doctors, my begging to have September 8, 2007, be one without incident and for healing in my grief for losing Dominic, and other very personal, yet specific requests I made to my Father... in so many things I asked for I still was asked to go through that crisis all over again with Bridget that we went through with Dominic. Relive the terror with yet another child. So intense and it still makes me heart race now thinking of it.

I was just watching this video:


It reminded me that Christ asked for things from our Father, too. He was already experiencing so many difficult things and also knew hard things were coming. He knew He felt so incredibly overwhelmed with it all, and asked for help to lighten the struggle as He bore through the most difficult act ever performed. Though he was overwhelmed, yet He overcame!

And I know God loves His son. And if God did not take it from Him, even a little bit, even in His perfection and asking in righteousness, that I cannot assume that my prayers were not heard, and that I was wrong to ask or somehow trying to contradict His will in my earnest desires to help my little one and avoid losing her and avoid having the terrible way it all happened happen again.

And when Bridget was in the PICU and I could not bear it, I just could not! The song during the sacrament meeting we attended - the exact hymn I can't recall - was about following the Lord's will. And then there was how I had my scriptures there with me, and months before I had asked the missionary at Temple Square for the scriptures that are read at the Christus, and I had been writing them all out when Bridget was just born and in the NICU. Then right behind that was the study manual I'd been using in my reading of the Old Testament - "Not My Will, But Thine Be Done."


I have been really hard on myself the last couple of days thinking how maybe my prayers weren't answered and I wasn't prepared for Bridget's impending crisis event and her subsequent death because I was not in tune enough to His spirit. That somehow I was not worthy. That I somehow inflicted all this terrible stuff and was not spared because I was doing something wrong, and that those who are granted reprieve (even if only a little bit) are somehow just more righteous than I.

It doesn't make it not hurt anymore. But it's insight that I need right now. And the celebration of Easter, and all that He suffered, means that there is hope. I don't understand at all the things in this life. The reason for the things we have been through, what lessons I am to learn, or how much more my family will face. That our community will face. What this world is going to go through. I just know He lived. And He died. And He lives. And I know that He loves me. And someday, the hope He has given us all will be fulfilled in a perfect measure. We will be robed in glories and rest from these troubles. And in the meantime, we will bear what we are here to bear.

I will keep asking for the strength to bear. For the courage to press forward. And for the heart that can be directed to ways I can help others to bear and press forward as well. This is Easter.

Tuesday, May 3, 2011

Mommy

This weekend will be another Mother's Day. Though I carried Dominic and Bridget in my womb through a mother's day, I never had them here to hold for mother's day. It makes me so sad. While little children are in schools creating mother's day surprises, Dominic and Bridget are still buried in the cemetery. I wonder if Bridget, who would be approaching four years old, would understand what Mother's Day is. Would her older siblings help her craft that special card? Would she pick the dandelions and make me a bouquet? Dominic, at ten years old, would certainly have been old enough to think about the upcoming event. I imagine something would have been crafted from the boxes of Lego blocks. Maybe he'd have been like most little boys, though, and just do whatever the teacher had planned. In 4th grade, do they still make Mother's Day crafts? I am sure, though, that if they were here, they would both put their arms around me. They would tell me they love me. I have to believe they would. But it is what makes me ache. Because they are not here.

Dominic never called me mommy. He barely made much of any sort of sound, and never formed a word. Bridget never called me mommy. She cooed even less, and never formed a word. Neither ever reached for me. They seemed to know who I was, and feel comfortable in my arms. They seemed to be content to be with me, but I wonder if they knew me enough to remember me. And yet, I cannot forget them. I am their mommy!

A Mother's Day wish is to have all of my family together. We go to the cemetery for the closest I can have to this. But of course, it isn't really satisfying. Lately, I have really wondered. With Dominic's birthday again coming and going, with the whole world forgetting. It makes me wonder how I could have gone so wrong as his mommy? How is it that I couldn't protect him in the first place? And how is it that I can't protect his memory? And Bridget, it seems, I have failed even more quickly. It has seemed that I can't find ways enough to remind the world that Bridget lived, that she is loved. And that they died so soon after they were born - I wonder if the world knew them enough to remember them.

I really wish I had a way to keep their memory alive. I don't want to give up. Even though we don't know really what caused their deaths, the most common belief is there is an underlying mitochondrial disease in our family. I've invested so much into having an official Mitochondrial Disease Awareness Week here in our state. And now I'm focusing on organizing an Energy for Life walk. Perhaps the legacy of Dominic and Bridget can be one of discovery and learning and innovation to help others' lives be lived better, and hopefully longer, when they are affected by this disease.

The site is up, and ready for you to join our team. This is our family's team - Mito What? Doctor Who?
Our team name comes from the reaction of hearing a medical condition not many people have heard about. As a mom, I've grieved the deaths of Dominic and Bridget. And I have had great concern with some things going on with some of the other kids. I'm worried they are affected, though no one can say for sure one way or the other. We have gone to so many different doctors in all sorts of specialties- then sometimes there's another doctor recommended to go see. Makes you just say "Doctor who?" Plus we're fans of the BBC Doctor Who series, so it seemed like a fitting name.

If you want to join another team, or start your own, or just donate for the fundraising generally, you can go to www.energyforlifewalk.org/utah. So you don't have to be in the area for the walk to help our efforts! All the donations will go to the United Mitochondrial Disease Foundation, the nationally recognized organization "to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families."

I hope to have many who will join us & support us as we work to increase awareness for mito, and help raise funds to improve testing and treatments. I would like to add teams - one for Dominic and one for Bridget, as a reminder of why it's so important to focus on how this disease takes the lives of too many children. As one way for people to remember that Dominic lived, and he is loved - that Bridget lived, and she is loved. So as soon as we reach our family goal, I'll add their teams.

Dominic and Bridget will have their pictures on the fliers, posters, and some of the other material we'll use to advertise the Energy for Life Utah walk. Here are the photos I chose:

There are six other children who will also have their photos on the materials. Two of them are still living, but the other four have also died. Mitochondrial disease is just a progressive and fatal disease. Mother's day will be especially tender for the mommy's of all these children.

Here are some facts about mitochondrial disease:

"In childhood, mitochondrial disease is more common than muscular dystrophy or cancer." http://www.medomics.com/Mitodx
"The mortality rate among children with mitochondrial disease varies from 10 to 50 percent per year. Most children do not survive beyond their teen years."
http://www.umdf.org/atf/cf/%7B858ACD34-ECC3-472A-8794-39B92E103561%7D/talking_points.pdf
How many individuals are affected?
Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers. Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging. Still others aren't diagnosed until after death

Sunday, April 17, 2011

Gammon

When Lil's husband got demobbed, I said—
I didn't mince my words, I said to her myself,
HURRY UP PLEASE IT'S TIME
Now Albert's coming back, make yourself a bit smart.
He'll want to know what you done with that money he gave you
To get yourself some teeth. He did, I was there.
You have them all out, Lil, and get a nice set,
He said, I swear, I can't bear to look at you.
And no more can't I, I said, and think of poor Albert.
He's been in the army four years, he wants a good time.
And if you don't give it him, there's others will, I said.
Oh is there, she said. Something o' that, I said.
Then I'll know who to thank, she said, and give me a straight look.
HURRY UP PLEASE IT'S TIME
If you don't like it you can get on with it, I said.
Others can pick and choose if you can't.
But if Albert makes off, it won't be for lack of telling.
You ought to be ashamed, I said, to look so antique.
(And her only thirty-one.)
I can't help it, she said, pulling a long face,
It's them pills I took, to bring it off, she said.
(She's had five already, and nearly died of young George.)
The chemist said it would be all right, but I've never been the same.
You are a proper fool, I said.
Well, if Albert won't leave you alone, there it is, I said.
What you get married for if you don't want children?
HURRY UP PLEASE IT'S TIME
Well, that Sunday Albert was home, they had a hot gammon,
And they asked me in to dinner, to get the beauty of it hot--
HURRY UP PLEASE IT'S TIME
HURRY UP PLEASE IT'S TIME
Goonight Bill. Goonight Lou. Goonight May. Goonight.
Ta ta. Goonight. Goonight.
Good night, ladies, good night, sweet ladies, good night, good night.
~t.s. eliot

Saturday, April 16, 2011

Dominic's 10th Birthday

Monday, April 16, 2001
2:16 a.m.
weight: 6 pounds even
length: 17 1/2 inches


Dominic Angelo

He's here!!



















But really, He's not here...

And so the photos I have to post on his tenth birthday are all from the short time he lived. All the photos we've seen year after year after year after year after year after year after year after year after year after year because he died.

Dominic Angelo was born Monday, April 16, 2001.

Today Dominic should be turning ten years old.

Though I truly celebrate that Dominic was born, that Dominic is my son, that Dominic is part of our family. That I held Dominic, cared for Dominic, played with Dominic, read to Dominic, sang with Dominic, talked with Dominic... I celebrate that I love Dominic! But today is lacking in the festive mood that would come with another birthday.

Ten years is such a milestone. It's the double-digits. It's the beginning to transition from childhood into young adulthood - not quite there yet, not quite leaving the playful, childish interests -- but starting to look ahead.

I can't even think of the right things to say. Everything sounds so bitter, cynical, sour, ungrateful, selfish. It all sounds wrong. But it all feels wrong. It all is wrong! What can be right about going to the cemetery to deliver balloons for your son's birthday when you never even shared a single birthday with him?

Taking liberties to edit the Preacher...

"The thing that hath been [said], it is that which shall be [said]; and that which is done is that which shall be done: and there is no new thing under the sun." (Eccl. 1:9)

It is all just the same thing year after year after year after year after year after year after year after year after year after year because he died. My feelings haven't changed. I don't like it one bit more than the day he took his last breath. I don't understand it one bit more, either. I don't see the purpose, nor insights, progress, good, experience, or whatever other vain word you want to use to try to make this all be okay. It isn't right! Dominic Angelo was born, and he died. And I am a mother who is living to write that her son died- and it's just wrong. It's against the natural order of things. And I grieve. I deeply, achingly grieve.

Friday, April 15, 2011

Decade

"Oh that my grief were throughly weighed, and my calamity laid in the balances together!" ~Job 6:2

Ten years ago today it was Easter Sunday. The day before had been a particularly emotional day. I woke up and I'd wanted to try to clear my mind. I walked to a nearby pond, and I just tried to connect to the heavens and find a sense of peace when things felt so unsettled. I walked back home, and our family attended church. After the meeting we went home, but I had a friend who was having a struggle with her husband, and wanted to speak with our church leader about things. I told her I'd walk back to the church with her. After walking back home, having felt contractions off and on all day, I started to wonder if I might be in labor.

I went to the hospital, and was hooked up to the monitor for an hour. I was dilated to a one, but was having some small, consistent contractions. When they checked me again, I was at a three. Because of the good progress, I was admitted to Labor & Delivery for the impending arrival of our son.

I wonder what I would have felt that day if I knew I would only have five months with him. I wonder if I would reflect back as much as I do had he not died.

I haven't had anything new or profound to say about it all. I still feel the same concoction of emotions boiling together as I have when I first started purging on this blog. This bubble or that bubble in the boiling caramel goo bursts, but a new one fills in its place. The emotions are just always a sort of commotion, transforming...

I don't really want to be writing about my little son in the past tense. I don't want to have to imagine what he looks like, what he'd ask for for his birthday, what theme his party would be, which friends he'd invite, what interests he'd have... I don't want to sit here thinking but not knowing what to think about it all.

A decade ago, I knew that things were changing. I knew that there was going to be transitions in life, adjustments to make, and that it would all be new and sometimes challenging.

I was naive.

I was ignorant.

I was excited to meet my son. I was wondering what he'd look like. I wondered if he'd have lots of hair. How big would he be? Was I going to be able to handle four children, and a move to our new home within just a couple months time?

I was very concerned and worried. Anxious. My last delivery resulted in an emergency c-section. The cord had prolapsed. There was no trace on the monitor. There was no pulse in the cord. Eight minutes later, our third child was born lifeless. I was under general anesthesia, and lost consciousness not knowing if my baby would live or die. I woke to learn they'd resuscitated her, and she was under an oxygen hood. But she was doing well! But the experience still made me feel so vulnerable. The thought of losing my baby was a very real threat to me. The labor felt intensified with the extra emotion.

And sometimes I wish I could crawl back through the decade. Lay back in the hospital bed. Close my eyes. And just stop. Stop it all from moving forward. From time happening. Keep my son safely inside of me. Three little ones around me. It isn't that life wasn't hard. We'd had quite a ride, believe me. But I had my family. All of them here. I wasn't missing anyone. Or at least I didn't know what I was missing. Of course, the children that have come to our family since then have all been a great blessing. I love them. Each one. And yet, if I had the chance, if I really could do it, and go back and just stay in that day forever. The worry. The anticipation. Just have my family be whole again... I just think I would give into the temptation.

Our language doesn't have the right word for things. For so long, I say I miss him. And I do. But not in the way that the word conveys it. It is so much deeper, longer, wider, encompassing. I not only miss what I had, but what I didn't have. I ache to hold him, but I ache to have him here knowing he's too big for me to hold now. I knew him as a real person, but I didn't get to have the experiences that define him in a way I could share with others who he is. He wasn't just a baby. He wasn't just a vacant infant, void of character, personality, gifts, skills, intelligence. He was a whole soul, and I knew him. And to say that I miss him could never really explain it.

My little son would wait until Monday morning to be born. Tomorrow would be his tenth birthday. He'd be double-digits, a decade old.

Grief is here instead.

Nothing Gold Can Stay

Nature's first green is gold
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

~Robert Frost

Thursday, March 3, 2011

Passed

Maggie Agnew passed away on Saturday night. The anniversary of when Samuel McCluskey passed away is coming up in a few weeks. So many children have passed away from Mitochondrial Disease-- like Samuel Knight, Gavin Owens, Piper Younglove, and Abby Halford.

Mitochondrial Disease is devastating. Hearing the news that another child has passed away is devastating. It all makes me feel so helpless. We got the reports from seeing the specialist a couple of weeks ago, and it still just says "Diagnosis: Possible Mitochondrial Disease." There is still no real answer as to why Dominic passed away, or why Bridget passed away. And no one knows really what to tell us about the rest of us.

So when I got home from the dentist this morning, after just picking up funeral programs, I was feeling so discouraged. Then I saw the update about the Resolution we submitted to the Utah Legislature for consideration during this session: HJR35 has PASSED! Now it goes on to the Governor!

Thank you for all of your efforts to help with HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution. HJR35 has passed both the House and the Senate, signed by the President in the Senate and the House Speaker and is now on to the Governor! This means Utah will have an official Mitochondrial Disease Awareness Week in September, unless Gov. Herbert vetoes it. The Governor has said he is hoping to avoid any vetoes, if possible, and I am told by those working at the legislature that it is very likely he will sign this! So if you want to make a quick call up to the Governor's office to kindly ask him to sign this bill ASAP, he can feel more comfortable that we're behind him when he signs this and makes it official.

801-538-1000
800-705-2464

You can send a message online from his website, if you'd prefer.

Here's the list of passed bills. Once the Governor signs it, there will be a date listed for that.

I know that having Sean and Michelle Agnew bring Maggie to the legislature made a real difference, and made an impression on the legislators about how devastating this disease is. Many have told me how much an impression Maggie made on them. Knowing HJR35 results in an official Mito Awareness Week seems to make Maggie's efforts in her last days of life that much more amazing. She is a real hero who made a difference in so many ways during her short life.

For Maggie Agnew, Samuel McCluskey, and so many others who have already fought their fight, I will keep doing what I can to help in the fight against Mitochondrial Disease. I invite all those in Utah, and anyone reading, to participate in the upcoming Energy for Life walk, and with other activities to commemorate the Awareness week, Sept 5-11, 2011.

Sunday, February 27, 2011

Maggie


I first learned about this little girl, only eight days younger than my youngest, reading an article online about her mystery condition causing her to have such difficulty with growing. I felt instantly connected to Maggie and her family for so many reasons. I wondered if she might have mitochondrial disease, the condition that is believed to have caused Dominic and Bridget's deaths. I wondered if they were working with the same doctors we were, getting the same non-answers we were. And they were. I was so touched by Maggie and her struggles, I posted here asking you to reach out to her family and offer encouragement. I added the "Hope for Maggie" button to my sidebar.

It took about two years for Maggie Agnew to finally see a doctor out of state who specializes in Mitochondrial Disease, to perform a muscle biopsy that would show Maggie had Mitochondrial Disease. By this time, the disease had progressed significantly. Only seven and half months after that diagnosis, Maggie Agnew has died. Now I am asking you again to reach out to her family, and offer encouragement. Please keep the Agnew family in your thoughts and prayers at this difficult time, and for the difficult days, weeks, months (and even years) ahead as they go through grief's journey.