The problem isn’t with the blogs really. I like reading the pediatric ones and I especially like seeing the kids grow up and do new things. It’s nice to see how some things have changed since Dear Son was small and on the other hand, a little depressing to see how much hasn’t changed and that parents are still trying to find answers to the same questions I had fifteen years ago.
For a while, when I read the blogs, it was a kind of relief, like, “Wow, I am glad those days are over.” But I think that would be expected by any mother my age looking at other new moms. I can also remember thinking about how trying those early years were, at least for me, always wondering if I was doing the right thing or enough of the “right” thing so that Dear Son could be all he could be. I was so afraid of the “what if's” as in, “What if he doesn’t walk?”, as if that would be the end of the world. My thinking on that day was how nice it was that I was beyond that now, and that Dear Son is who he is, and it doesn’t matter what he can or can not do because we have both grown up together. He is a charming, delightful teenager and his disabilities don’t seem to matter in terms of who he is but rather, it’s more wishful thinking on my part, that I wished he could do things, to make his life easier and I guess so he’d be happier. I have no idea if he would be happier but I would be being able to do things for yourself would be nice and not have your Mom doing these things would be even better.
But this week I was reading the blogs and it hit me. Dear Son is never going to do anything else, meaning, there isn’t anything to look forward to anymore. I mean really, his days of walking are over. His days of rolling over are pretty much done. His days of standing are over. His days of eating are over. As the other mothers are anxiously awaiting for the days their special needs sons and daughters are going to do something, well, what am I waiting for?
The last few times Dear Son has been in the hospital, I am visited on the first day of every admission by one of the general pediatric attending physicians. It’s usually at the end of the day and when I least expect it. They’ll come into the room and find a seat on the couch and I know “the conversation” is coming. It sucks. The conversation they have with me know goes something like this, “We have read Dear Son’s history and blah, blah, blah and we want to know how you are handling this situation.” What they really mean is, “Where are you now that you know your kid is never getting any better.” God, I hate this conversation. I look them in the eye and tell them very matter of fact that, “It is what it is. I love my Dear Son and want him to be happy. We live every day to the fullest that we can and when the time comes that he is gone, I will know that I have done everything I can to make sure he had a good life.” I elaborate a little bit in there but I try to just be honest and direct.
But I think about that now and I wonder if it’s really enough. When Dear Son was very small, I used to think about him and the fact that he never hit any milestones and I had nothing to write in that baby book. I wrote the post, “Don’t Hate Me Because I am Beautiful” because I described where I was at that very time when he could do absolutely nothing. Back then, I looked at him and I saw that he was beautiful and that’s what I held on to.
And now, fifteen years later, we have come full circle. We are back to the beginning and I am asking myself the same question, “What do I have?” I thought about it a lot these last few days. I don’t know what I have but maybe, I need to just love him for who he is, not what he didn’t become. I guess in the end, none of that really matters, or maybe it never did.