A steady stream of good days and good moments make the appearance of bad ones all the more surprising. They sneak up on me like a thief, and cause me to search despairingly in my empty hands for things on which I thought I had a grip: hope, and faith that all will be well. Before I'm able to identify my emotions or determine where they're coming from, I find I've become frustrated, snippy, and short-tempered. On the bad days, I hate who this is turning me into.
Determined not to let the diagnosis rob me of my genuine excitement, nor suppress the nesting instinct, I've prepared items for the nursery. I've hung up his clothes in the closet, and I've completed my registry (I think). This past weekend, I bought wood blocks of letters that spelled out his name and I painted them. I sing to him in the mornings and talk to him all day, and I smile whenever I feel him move, stretch, and kick. Sometimes I imagine his kicks as a baby form of Morse code, a way of communicating with me: Chill out, Mom. It will be okay. I'm going to be fine.
I hope that's what he's saying to me. I hope that he's right.
More than knowing that my child will be facing tremendous challenges in the first weeks, months, and years of his life, I'm grieving the loss of companions who have been mine for this journey thus far. Before I was pregnant, I knew I wanted to seek the care of midwives when it came to pregnancy and childbirth. For many reasons, it's a model of care I believe in. More than our caretakers, these midwives have been our advocates and supporters. They understand this is deeply personal to us, and it is personal to them too. I looked forward to having them attend this birth, to meeting my son in the comfortable birthing suite at their facility.
Now 23 weeks pregnant, I need to find a new provider, someone who is currently a stranger to me. Some think perhaps that this shouldn't be a big deal to me (since as a mother, I should naturally want to do what is best for our baby -- which I do), but I am losing something real here -- something deeply important to me, and I just don't know how to come to peace with this, or how to reconcile myself to another abrupt change in our plans. It isn't something I can easily dismiss.
All the what if's? plague me. Questions arise that if voiced, many would be quick to dismiss, telling me I can't dwell on things like that. I don't dwell, but denying the questions exist doesn't help either. They brew and they bubble inside me, and while I don't roll out the welcome mat for them, their presence lurks nearby like an unwelcome stranger. And then I turn into that person I hate again. My own company becomes unbearable to me, and my behavior hurts those around me.
What if he's one of the 5-10% of children that doesn't make it after surgery? What if my body has betrayed him? What if, in having another child, we find he or she has the same condition?
Many are quick to preach hope, and not without cause. The odds are in our favor with an early diagnosis, and with finding more than nine out of ten children living healthy, normal lives after a series of procedures to correct the issues present. We are in one of the best possible places we can be when it comes to the treatment available for the tiniest of hearts. In the weeks since learning the diagnosis, we've been connected with other parents whose own children were diagnosed with serious congenital heart defects (none of them the same as Ewan's, but still plenty serious) and have gone on to become thriving and active children. These are the only people who can really understand what we are and will be going through.
And then there's you. Praying for us, adding our request to the prayer chains at your churches, sharing it with your friends. We have people praying for this unborn child from coast to coast, and in countries across the world. Like my sister says, "We're going global!" There is so much love coming our way, so many advocating for Ewan's life, I cannot comprehend it. I want each of you in the same room, and to embrace every one of you tightly. I don't know how to say thank you. The words are a feeble representation of the heartfelt gratitude they are meant to convey, and yet we all know that even the most powerful and perfectly chosen words utterly fail in their reach at times like this.
Even so, what you say has not failed to touch our hearts. Please know that. Your words are a blanket and cocoon, a lifebuoy in a raging sea. I cling to them, wrapping myself in them over and over and over.