When Ellie was little I would search the blogosphere for information about kids with CP and multiple special needs and I would always find that the blog ended when the kid was about 6 and it was maddening in terms of outcomes. Like, what happened to them? How did they turn out? What does this mean? And of course the smaller voice whisper-shouting, "I need to know how this is going to turn out!! Now! Please?"
But now that Ellie is 8 I am there in the middle distance of her childhood. I have a lot of answers I agonized over when Ellie was under 2. And, obviously, there are still a lot of answers I don't have, like what will happen to her when I die? Which, let's just be honest here, is the scariest, most upsetting, soul crushing question of all.
I still don't feel any cheerful carefree optimism about that. Not that there is nothing to be optimistic about. Not that there won't be people who love her. Not that there won't be amazing outcomes. I don't feel optimistic about that because currently that is not how I am made - on that topic.
But at eight, and maybe I should have learned to trust more, I can tell you many of the fears I had when she was in the NICU or at ages 1 and 2 are gone. She is not a "vegetable" and well beyond that she is the coolest, most beautiful, smart, funny little eight year old I could want. I am happy being her mom. She goes to school. She has a life and there are other people in our world that love her and us. She rides a horse for crying out loud! She EATS. She is growing and gaining weight. She LEARNS and loves and laughs - a full belly laugh now that I really must record and put on this blog because Ellie's laugh would make the most stodgy, serious, kill joy of a person laugh too.
But why did all those other bloggers stop writing? I think I know. Time. Now that Ellie is so much better there is far more to do outside the home. Instead of keeping a vigil over her sleep (where I would find myself writing) I am taking her to ride Splitty or to school or to the museum or to the beach or to grandma's house. Instead of holding her while she is sleeping off a brain surgery we are dancing around the house burning up all that enviable eight year old energy that is seemingly inexhaustible or we are learning at the computer or working using her "voice" (which I need to post about). Or we are eating - which still takes considerable time but at least it is by mouth with such non-exotic things as Mama's Spinach Pasta, Green Goodness, or Eggy Pudding. All of which are made fresh and with ingredients that are off the shelf versus ordered from England. For those of you who have read through this blog (which is amazing if you have) you know what I'm sayin.
Also, because she is well enough to do these things, I am working more, far more. At this point in life I am finally getting to pick up the wreckage of my pre-Ellie life. And wreckage, be assured, is NOT a strong word or an exaggeration of any sort. A big chunk of that wreckage has to do with my dissertation and doctoral degree I was making revisions on when Ellie was born. Imagine meeting all the requirements for a 4 year Ph.D. program (classes, internship, entire dissertation) and then not finishing? In short it was a hard, bitter pill I was never able to digest or synthesize. I tried to mediate it away, to get Zen about it, then go all fate/wasn't my destiny on it, etc. Tried to forget. But I couldn't. And then by some miracle of good karma - because it seems apparent that I must have a little built up somewhere, that opportunity is on the table again. I am being given the chance to resolve this - to finish it - to complete this dream. So of course I a sitting here procrastinating and blogging to all of you about it.
What this made me realize though is that we are in a different phase of life. The baby phase, that I thought would never end (where they don't sleep ever and your child is total care and for us that meant so much more than with a typical kid) has ended. Ellie is still "total care" but...she eats (not on her own but 99% from a spoon), she goes to school every day, she has autonomous play for short periods, she can sit alone (with support) which is a big change from having to hold her head up so she wouldn't stop breathing. In short, life is better. But busier and taking place more out in the world. It's nice to be back in the world though I must say it was a slow and painful process getting back out into life. Even so it was worth the journey.
Now to find a balance and pace for this next bit of life. I am not sure what it will hold nor am I making any inane predictions that all will be well, considering all has happened, that would just be stupid. There is one thing I learned from this whole thing that pertains to this post and where we are now and it is that the best way to spend your time is being present and appreciating by simply being awake (truly awake) to your own life in the moments it is happening.
