So where am I six months later? I’ve always been more on the introspective side but never so much as I am these days, always evaluating my current mental condition and perspective in relation to the world around me and I find myself living a very split existence these days.
On the one hand I have to say that I am feeling much more comfortable in my role as a mother and with all of the new responsibilities of parenting a special child. I’m beginning to feel like I’ve found a place, a home, in this new place and the terrain seems less and less imposing and threatening as the days go by. I love my support group at EPU and I look forward to reading the PWS message boards and other parent blogs. Sure there are still posts that are major buzz-kills, but instead of being driven away by these things I feel grateful to be a part of a community where no one has to go through these things alone.
On the other hand, especially at night after everyone else has gone to bed and things are quiet, I find that I am still pretty brokenhearted. It’s not so debilitating as it once was and I wonder if this is an ache that is just a permanent part of life when you’ve got a child with challenges or if I am choosing to dwell in my grief as part of some last-ditch effort to cling to my old life and to avoid full acceptance of where I am now. I am reluctant to give up the sorrow completely because it is in that vulnerability and weakness that I have found the most peace and comfort from God.
I’m glad to say that I regret very little about the last six months and in hindsight, in fact, I feel oddly fortunate to have had this experience, with all its peaks and valleys. But it is the simple moments, those that somehow transcended their very ordinariness, that I return to most often. I remember sitting in the NICU with my pastor the night we got the initial diagnosis and weeping over Hope, then just barely over four pounds. She placed her hands on mine without a word and I was suddenly aware of how unique and isolating the relationship of mother to child could be and that I would be alone in this experience. Yet I also felt in that moment, and in the weeks and months to come, what it means to be a part of the body of Christ and how unbelievably blessed we are to be enveloped by the grace of our church family.
“We’ll get through this,” spoken plainly and simply by our pediatrician for some reason maintains the top place on the list of the nicest things anybody ever said to me throughout the whole course of those first difficult months. I can honestly say that nobody said the wrong things to me and I don’t know why something as basic as “we’ll get through this” has had such a long life in my memory but I think it must have had something to do with the timing. There was a future, a light at the end of the tunnel, there was something to be “through” — the darkness wouldn’t last forever. That it was spoken by a doctor was also a turning point, we’d no longer be a family that had simple checkups once a year–suddenly our relationship with our doctor (and medicine in general) became a lot more personal.
A close second came from our early interventionist who has provided more than one gut-check over the last few months. Fairly battered by my own hand for how I was coping with it all, she asked, “could you have done any better” Truly I hadn’t even considered whether I could have handled it better, or differently, and suddenly realized that I had done my best. Still, I was disappointed that my best wasn’t better. But over the course of the last few months I have thought about that question many times and each time I come up with the same answer but my perception of “my best” has improved with time. I did the best I could, and my best as it turns out, is pretty good.
Very early on I could feel that I was changing as person as a result of what we were going through. I equated it to the scene from Superman 2, when Superman decides to give up being Superman to be with Lois Lane. He goes into his crystal molecule chamber and the very 1980’s special effects show the physical “tearing” of the Superman from the mere mortal. As the man walks out of the chamber, you see the ghostly image of Superman crumble and disappear into the floor. Shortly after this, Clark Kent gets his butt kicked in a diner. For I long time I felt like that was me, that I was walking out much weaker person into a world that was going to tear me apart. But I have found that once I got out of the bedroom, and especially since I unplugged the breastpump, I’ve actually emerged much better than before.
I wouldn’t go so far as to say that I came out Supermom, but I have definitely regained some of the confidence and composure that I thought was gone forever. Life is certainly more complex, but it is also fuller and richer than ever before and I think that’s a worthy trade-off.