For some reason, I can't seem to be able to start this post.
I've written and erased several beginnings.
I find it very difficult to write about prematurity.
There was a great post at Purgatory a few weeks ago and LIW wrote: "I have a tendency that my therapist, Susan, knows all too well, to downplay what I have been through. The thinking goes: 'if I survived/accomplished/endured it, then it couldn't have been THAT bad, which means that ANYONE could do it and probably do it better'."
We survived it. We got through the delivery and the NICU and the afterwards and we just closed the book on speech therapy, the last reminder that we know of their prematurity beyond their small stature. Therefore, the answer in my world too is that it must not have been THAT bad. Because, looking through the blogosphere, it is quite easy to find stories where it has been worse. And therefore, not that bad becomes further and further diminished with each other story until it becomes a speck. You begin asking yourself, what's the big deal. Why am I so bothered by those early pictures? It certainly could have been worse therefore, it falls into the category of "not that bad." And if it is not that bad, it is okay. And if it's okay, then it can certainly also be considered good. And if it is good, there isn't a problem at all, is there?
I'm not sure if this pattern of thinking is a defense mechanism or guilt.
I am very drawn to reading about stories similar to my own and feel a definite kinship with other parents of premature twins. I recent read a book called Tiny Toes, which is actually written by a fellow blogger, Kelly Damron. It chronicles her journey from choosing a clinic for treatments to IVF to bedrest to premature birth and life beyond with premature twins. Arcing over the story are depression, marital woes, and strain with her in-laws.
And it's hard not place yourself into the story when she shares this slice of her life so honestly and poignantly. She leaves no emotion unturned, admitting to her own foibles and pointing out the mistakes made that lead to larger issues later on. I was struck in the story by the way she reflected on moments, sat with them. Made the reader sit with them as well. And didn't brush off the experience as not that important, not that bad.
In another week or so, I'm going to begin fundraising again for March of Dimes (though, hey, feel free to jump in now). We do the walk each year with the ChickieNob and Wolvog. It's partly for the March of Dimes but it's partly to not forget or minimize their birth. I think it's important that they walk in it or ride their Big Wheels. It's the same impulse that makes us go to the NICU reunion each year. It's partly for the doctors to see how big they've gotten and it's partly so we don't forget how small they started. It's good to move on, but it's good to look backwards too. We don't have the worst story and we don't have the best story, but we have a story that drives us to connect with other parents of premature children and to raise money and awareness for prematurity.
I am currently building my webpage for the event; trying to decide what to write. I know it is only up for a short amount of time--there is only two months until the walk. But it feels so important too. As do all the people who donate or participate in the walk. And I'm finding it difficult to write that page too.