Thursday, July 30, 2009

From Mourning to Dancing - part II

Part I

With the Trisomy 18 diagnosis confirmed, we decided that the easiest way to let people know would be a mass email. A pretty impersonal way to find out news of that magnitude, but we knew we were not up to re-telling the story dozens of times and having to exlpain the details over and over. The term "incompatible with life" was still ringing in our ears. We didn't want to have to repeat it at nauseum.

The response from our family and friends was overwhelming. We received emails from all corners of the globe, from friends we'd lost touch with, and from people we'd never even met., but who had somehow heard our new. Many people included poems, scriptures, or verses from songs, the majority of which went unread. The news was much too fresh and our emotions were much too raw for any of it to be helpful at the time.

We spent most of our spare time researching and reading. I joined a support forum for families dealing with a Trisomy 18 diagnosis. Much of my time there was spent reading of the experiences of other families. Other families who had lost babies. I read their stories, looked at their pictures, and cried.

Sometimes it felt like I did nothing but cry.

* * * * * * * * *
After doing almost unending reading online, talking, and really searching our hearts we knew what we were going to do. We knew that we'd never be able to end the pregnancy early. It might have been easier in some ways, but we knew it wouldn't make the pain any more bearable.

The option of induction and ending the pregnancy early was tempting, thinking I'd somehow save myself some pain by not really having a chance to bond with the baby. Because if I could convince myself that I hadn't already bonded with him, that he hadn't already become a part of the very fiber of my being, that he hadn't already taken over every tiny crack and crevice of my heart, and that I hadn't already planned an entire future in which he was an integral part of our family, well it wouldn't hurt so much. Right?

But we knew how much we already loved him. Once it was said and felt, it couldn't be taken back. We still wanted to meet him and see him and hold him. We decided to do everything possible to love our baby while he was still inside of me and for as much time as we'd be given with him once he was born.

While clicking through the archives and galleries of the Trisomy 18 Support site, I found myself focusing on the stories of the babies who had lived for at least a short time after birth. I didn't want anything to do with the stories of babies who had miscarried, or died in utero or during birth. I couldn't handle the thought of that happening to us. Our biggest hope was for time.

* * * * * * * * *
In Romans chapter 8, it talks about the Spirit interceding for us in groans too deep for words.

Groans too deep for words.

That so perfectly describes my state, my heart, my depth of grief at that time (and for a long time afterward, but I don't want to get ahead of myself). It was near impossible for me to pray. I'd get as far as "Heavenly Father, please..." before dissolving into tears and wracking sobs.

Thankfully, even though my words wouldn't come, I knew that those who loved us were praying. When pressed for specifics, these were our requests:
- that I would be able to carry our son to term or as long as possible to give him the best possible chance
- that I wouldn't go into early labor
- that he would be born alive (!)
- that we would have at least a few days with him, even being able to bring him home with us
- that we would be able to plan this all in a way that would allow for our family to be with us when he's born - to meet him, hold him, and help us celebrate his life.

The difficulty in planning something like this was that most Trisomy 18 babies don't survive pregnancy. There's a high risk of them dying in utero. Initially we hoped for a scheduled induction or c-section (more risky for me, but it would have given the baby a better chance, as labour -induced or occurring naturally- would be very stressful for his heart) around the 37-38 week mark. Scheduling the birthday was especially important for Peter's brothers,spread out in the States, his parents as far away as Egypt, and his sister possibly in Spain. Having missed the chance to hold our nephew, Lachlan, when he was born, I knew personally how important this was.

* * * * * * * * *
One of the worst things during this period was the constant uncertainty. Only three days after receiving the diagnosis, I found myself constantly worrying about whether he was still alive. And would he be with me tomorrow? The upside was that I was able to truly enjoy and cherish each little flutter of movement. He was quite active (even at only 20 weeks!), although that made the situation that much more unbelieveable. He seemed so healthy and active.

In those early weeks, we really stuggled over the lack of control that we had over the whole situation. You know the Serenity Prayer? "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference." Well, we couldn't accept what was happening OR change it. We were stuck. It all seemed surreal. We hadn't quite come to terms with it (likely never will), but we were slowly able to accepted that we had no power to change it. We were determined to enjoy the pregnancy as much as possible since it might be all the time we would be given (at least we decided to be determined. At some point...).

It became clear though that being sad and depressed all the time was not helping me or the baby. I had not been sleeping much, had next to no appetite, and could hardly keep down what I did manage to eat. At that point, it was not longer morning sickness - it was the stress of it all. So I decided to (try to) control what I could, and resolved to be happy and healthy for my baby's sake. That was easier said than done however.

If I wasn't playing with Liam and trying to hold it together for his sake, I was crying. So Liam, our little just-turn-two year old ball of energy, sunshine and happiness, quickly became Peter and my sole focus. He was already the center of our little world, but he became (quite seriously) all that kept us going.

I clearly remember sitting with Peter on the stairs to our backyard deck, watching Liam play with the pool we had set up for the summer. He was throwing toys and sand into the newly filled pool, but, as it was only a few days after the diagnosis, we didn't care near enough to stop him. Peter and I were both lost in our own thoughts when Peter said, "If it wasn't for Liam, I'd go drown myself in that pool." I knew he was serious.

Some of you might be taken aback by that, but I wasn't. Not at the time. Not when I felt as awful as he did. But I wasn't worried, because I also knew exactly how he felt about Liam, how much he loved that little boy, and how that love would keep him going.

It was keeping me going, too.

P.S. I Google "Serenity Prayer" to be sure I was quoting it properly. It's obviously been a long time since I've seen the entire prayer (even though it was hanging in my parent's staircase since, oh, TIME BEGAN), and I was blown away by the prayer in its entirety. I'll post it here for all your benefit. It's lovely.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

--Reinhold Niebuhr

Part III


  1. Thank you again Amy, for sharing this experience with us.

  2. This is such an incredible story. There is a beauty of spirit that comes through your writing. Thank you so much for sharing.

  3. I've read both installments of little Nathaniel's story. Learning of the depth of Peter's sorrow and grief in this post was particularly moving. We don't often see or hear of the father's heartbreak in this type of situation and I thank you for sharing that with your readers.

    I'm glad to know Nathaniel in some small way and am reminded of my own little ones who were but a fleeting presence in my life yet left an indelible impact on me and my family. We never forget...

  4. Honestly, I complete understand Peter's statement about the pool and also your knowledge that his love for Liam would never let him do it. Life is so unfair. My heart aches for you because I am also sure that ache you have never goes away.


  5. You guys are in my heart and prayers for always. Thank you for sharing this very personal story.

  6. "Accepting hardships as the pathway to peace"- how beautiful...

  7. That prayer... I've never seen it in its entirety. Beautiful.

    I understand Peter's statement too... and yours as well. Totally.

    Thanks again for sharing Nathaniel's story with us.

  8. Dear Amy, thank you for sharing your little angel's story. I know that losing a baby is very difficult thing to endure. We have had two miscarriages in the last year. The first one was actually almost a year ago, we were in the early second trimester, then in March I had a blighted ovum. We feel sorry for ourselves for the things that we will miss; first smiles, first steps, kissing their sweet little forehead, late night nursing, watching them grow, all the hopes and dreams we have during pregnancy. But we have to be happy for them knowing all the things that they will be missing; they will never know pain, or suffering, or ever be scared or sad, all the the babies in heaven are truly perfect and at peace in the arms of God.
    I'm so glad that you have the Lord to help get you through those tough times, can you imagine how much harder it would have been without trust in Him?
    All my love and prayers.
    Your cousin and sister in Christ
    Amber Russell Vukich

  9. I read your words, felt your sorrow and am thinking of you.

  10. I'm in tears. You really have an amazing way of sharing the situation that really lets the reader know how you felt and what you were going through. This story will touch so many hearts and hopefully be a lifeline for others going through the same thing.


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