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.
* * * * * * * * *
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.
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.
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.