Today I again feel a striving need to be honest. I’ve been dragging lately. Some of this has to do with being overwhelmed by work (that’s over), paperwork getting the kids in camp and keeping it going (that’s done too), vacation (long done), and hubby a bit frantic over a new job possibility (he was hired, starts Monday). All the crazy stuff is behind me for a while, and I have some pleasant projects on the near horizon, including getting my blog class ready and marketing for September.
Part of it too was that I missed about 5 days of my thyroid medication, and it’s made me droopy while I get back on track, as well as I’ve been eating like crap (all while making sure the kids eat right). Round that off with no exercise, no supplements, and not enough sleep (camp means I need to get up around 6:30, yikes!), and that has left me wiped out. No one to blame but me and I’m working to remedy it.
However, there is something underlying my downness that I realized on vacation. As mentioned, some things did not sit right with Zoe, and vacation, which throw off most kids, did her a loop. She loves camp, don’t get me wrong, but she is having a struggle lately…even though she’s getting better at fitting with it daily. So I’m not sure if we messed her up when we went BACK on caseins and glutens, if she got really disoriented by the changes, or if she having difficulty transitioning.
The fact is, I don’t buy any of that. When were in Disney, I became painfully aware that what is AWESOME! to a typical kid, or even to Amelia, is pure suffering and agony and just downright unpleasant for Zoe. And as much as I try to integrate her into things..and many things go well…there are just some things that autism and SPD stand in the way of enjoying.
I *also* know that it’s suddenly not PC to say autism sucks. I apologize to every single person with autism I might offend, but the reality is that I cannot stand up and sing the praises of a disability that has made my daughter do things like bite her arms til bruises appear, makes my other daughter constantly sacrifice toys and food so that Zoe doesn’t “pitch a fit”, or have Zoe be utterly unable to wear a shirt in any vehicle she ever rides in. Don’t even get me started on what heat or a diaper rash or wet clothes or being sick or even just being NEAR the doctor’s office do to her.
So with all due respect, the lightbulb switched off this vacation: Zoe is far more disabled at this age (almost 6) than Amelia was at the same age. And when that struck home, I had to SIT because the wind went out of me. We think of Down syndrome as this awful, unconquerable, genetic, “my child will never be cured” thing. But autism? We think Temple Grandin, we think “they can be smart, successful, married, have kids”, we think this or that treatment will solve this or that issue. Maybe it will, we’re trying gluten-free, casein-free again, still cautiously, still haven’t moved on to supplements or other extreme solutions.
But I have to be realistic. What if it doesn’t? What if this is the best she can be? What if she can never make friends, or the potty is a goal too high for her, or communication will never be solid? What if your child is far more “delayed”, “disabled” or… “MR” than you hope for? What if she stays this way?
This has been on my heart since vacation and all I can say, folks, is I am in a world of hurt. I’ve revealed this to no one. I want to be optimistic, I try to be, but this idea runs like a deep chasm in my soul and it’s unfathomable. And that was the post I was going to write today, when I had my pity party this morning and cried me a river.
THEN, I remembered this morning to listen to Joyce Meyer and yea, you can say this is platitudes, this is silly, you have faith in an imaginary being, or whatever. This is my cross to bear, but I absolutely am ill-equipped to hoist it alone. I don’t ever really understand *what* it means to give it to God, but I have to try. It’s not my pain, it’s His. All I can do for Zoe is love her, try things, and pray for her – then let God do the rest, whatever that means…whether she leads a typical adult life or not.
The beauty of Christianity is that the ending is really Cinderella-happy, and as much as I’ve been a deep, DEEP doubter for MOST of my 45 years of life, I can wrap my arms around that and it gives me hope and the strength I need for another day. I have what I need to move forward.
And today? I don’t want to be special needs mommy today. Today I want to be gina b. I want to be the woman I feel like inside, and stop worrying every freakin’ moment of every freakin’ day about the food, the vitamins, the door being, did we do site words, does she have a rash, is it too hot/cold in here, is there too much TV on, is she playing Wii too much, has she eaten chocolate, why is she misbehaving, blah blah blah. I’ve HAD it with worry.
Maybe that’s what it means to give it to God. He can take my worries, honestly, because I can’t take them any more. I’m sick of them. I can’t bog myself down with anymore overwhelm either, today, I want to live in the moment. I’m just going to go out, be me, and love my kids. And focus on the positive, like the pretty good hair day I’m having.