|Ewan's room as of Sunday morning -- we've gotten a lot more done since then!!|
This weekend was a lot about making a push to get more things ready. I had my last baby shower and my Dad came down to paint his room. James made a homemade diaper sprayer and hooked it up to our toilet. Auntie Kaari did a lot: put together the stroller, helped rearrange the room, washed clothes and blankets, and was my shopping buddy for the last few things we needed to help make it feel complete. I ordered the cloth diapers we had decided on, I sat and watched him move through my growing belly.
But amidst all these normal baby preparations is the poignant awareness of what waits for us: a dark and looming unknown about Ewan's heart -- how bad it is, how long will we be in the hospital, and the question of whether or not we will even get to bring him home. The last cardiologist we saw suspects Pulmonary Atresia in addition to the Tetralogy of Fallot, which if it is the case, only complicates things. Ewan's pulmonary artery is just too small to make a positive diagnosis one way or the other. Pulmonary Atresia makes it all dicier, and scarier. We know the medical community tends to present the worst-case scenario, but given the circumstances, we know it could be true, and we know better than to presume upon the better news.
And so I find myself going back and forth, making these standard preparations for having a baby: readying the nursery, picking out colors, washing clothes, setting his things out. And then there are also the things that are hard to get ready for: seeing my baby hooked up to tubes, wires, and machines. Waiting and wondering as they wheel him off for his first surgery. Making sure that in my hospital bag, I'm also packing things that will prepare me for being away from home for a few additional days. When I went shopping today, I made sure I bought a dedicated notebook where we can record doctor's notes and write down our questions, and a bottle in which we could put some holy water so he can be baptized before going off to surgery.
It's hard to know what normal is, or even if such a place exists: I don't want to lose the joy in preparing and anticipating this little someone we've loved and have been waiting for -- but these preparations are, for me, a double-edged sword right now. I know these preparations are more for me than for him. They are an exercise in hope, an exercise in feeling as normal as possible as much as possible before our experience of pregnancy and birth becomes so markedly and dramatically different from that of most people we know. It's my way of saying I don't know what will happen, but my son is alive now and I am going to honor that.
The other side of this is that it is precisely these preparations that are throwing into sharp relief for me just how not normal our situation is. As we sat through baby baptisms at church yesterday, I wept. It was just one more thing on the growing list of things that we wouldn't get to do like normal people. I broke down last night as I sat and folded his clothes. Holding them close to my face and then my chest, I wondered if I would ever get to dress him in them. I couldn't stop sobbing. I looked around the nursery we had readied and wondered if baby Ewan would ever be using it. James even said he's not sure he'd want to stay in this apartment if what we don't want to happen, happened -- Ewan is the whole reason we moved into the bigger space.
The closer we get, the more difficult it is getting emotionally. While his birth is not immediately imminent, it is close enough that the difficult reality in which we are about to be immersed is so very close, and so very much out of our hands. Nobody can tell us how this will turn out, and no one can provide the kind of reassurance that would put us at ease. We are hopeful about the outcome, but cannot presume that we won't have the kind of story no one wants to have.
So we wait and we hope, we prepare and we pray -- hoping we can bring him home and love him like we want to.