Now, I'm not saying it's an easy gig. Or, that I was 100% prepared for the intense level of parenting it is. But, I've really been noticing the difference choosing makes.
Let me explain.
I have a friend whose boys were born autistic. Her marriage broke up when the boys were in elementary school, and she's raised them on her own ever since. Now, they are in their late teens, and she's still alone, loving her boys, taking care of them, and trying to make their lives as happy and "well-adjusted" as square pegs can in this round-hole world.
They do movies, and sometimes the Art Museum. Disney on Ice is a big hit for them, too. They make it every year. They're a bit conspicuous at Disney, though. Her "boys" are both well over six feet and not small. But, they squeeze into the little seats at the Arena and wear their mouse ears with pride as they sing along with the Princesses. They love to go to the zoo, and the State Fair each summer.
I admire how much they do, how active they are despite some significant behavioral challenges.
But, one night over a glass of wine, as I was rambling on and on about how gorgeous my new granddaughter was, and how sad I was that my son and his little family lived so far away, I happened to notice her face. And it hit me like a forehead slap: she would never have grandchildren.
My heart just slipped down from my chest into my stomach, and I felt tears behind my eyes. Oh my word. Here I was going on about missing my son and his family, and here she was - mourning what will never happen. Wow.
I apologized. Sometimes I'm pretty slow.
The list of "nevers" for our kids can be long. Kameron may be eleven, but believe it or not, things like his inability to walk, run, play "real" basketball, swim, rollerskate, ride a scooter--these loses are just now starting to dawn on me. It's like all these years have been spent busily keeping him alive and striving for immediate goals. Things like keeping food down, breathing, and talking - these were his developmental milestones. At least as far as I was concerned.
Lately, though, I'm grieving those losses for him, and for me. All the things traditional parents of special kids have to work through over the years, as their baby grows up and they find something else he or she should be doing, but can't, I'm just now figuring out. Just now seeing the very wide chasm between Kameron and his peers in 5th grade. And it sucks.
But underlying that suckiness is the very strong awareness that if it's this hard for me, this late in the game, how much harder would it have been to feel him grow in my uterus, kicking and swimming around in there, anticipating his arrival, choosing names, talking to him as he grew, having baby showers, fixing up his room...and then have all that crash around me when everything goes completely wrong.
And then it keeps on going wrong, despite your best efforts for your child. That list begins to form.
This is not to say that parenting a special needs child is a thankless, hopeless task. It simply isn't. And most of us will tell anyone that. We celebrate all the tiny victories - and I think that makes us grateful people.
But, it is a grieving thing, too. Our entire belief system has to adjust and change. Dreams for the future of our child need to be adjusted and reevaluated. Our whole world is turned upside down and inside out, and it takes time - maybe a lifetime - to get used to it. Because the reality is that the upside down, inside out world is our new home.
Whether we chose it, or it chose us. Better head on down to Target and get some stuff to make it cozy.