This blank screen can be an intimidating thing. Sometimes walking away from it and leaving it blank is easier than doing the real work and getting it all out.
And this about to be thought vomit that might not make a lot of sense but here goes...
First of all, you need to know Christian is perfect. He is doing great! In fact, I just got a call from his teacher today bragging on him. He had great eye contact all day today and he loves being held upside down. Yes, I said upside down. He even anticipates it when you bring back up, he'll push himself back so you tip him upside down again. So he was playing games with his teacher showing her he wanted to move.
We are all good. And busy. But good. We're just content and happy with where we are right now and thankful. Grateful. Every day.
There is this thing about being a special needs parent. This "thing" I don't have a name for it. I can't really blanket it over all special needs parents. We're all very, very different breeds. Much like regular parents. So I can only speak for me. And maybe those like me.
I want so much to be seen as "normal." I don't want pity for a single, little second. In fact, when people just find out about Christian I gloss over it, don't make eye contact, and I'm quick to let them know - he's okay, we're okay, it's okay. Let's move on.
I'm normally pretty social and girly and I can be petty. Petty feels normal sometimes. It feels like a luxury. I know that doesn't make sense but stay with me. Pettiness is this silly little emotion about things that are unimportant. Not life decisions, definitely not life and death. Pettiness is silly and flippant and unimportant. So being in that feels far removed from the life decisions that me and my kind make on a daily basis.
I always feel like - let's laugh a lot, things are normal, let's joke, let's tease, I'm normal, nothing is wrong, let's just be normal! It's like I'm overcompensating so nobody treats me less than normal.
But I want it both ways.
Over the holidays I had put off Christmas shopping, which was extremely stressful. I was already under a lot of stress and indecision. And you know what happens when you're not prepared and you're stressed and you're not paying attention? Grief. Grief happens.
So I'm hurriedly shopping at 10 o'clock at night down the scavenged toy aisle looking for something appropriate for Christian. I wanted to get him something age appropriate, something I think a six year old boy would like. I'm seeing characters and action figures. Playsets and Legos.
Could this work for him? How could this work for him? Nope. That's not for Christian. None of this is for Christian.
It's wasn't for him. And usually when I'm paying attention and I'm not stressed and being so last minute I can prepare and plan and really think about how to make something FOR HIM. But when none of those elements are in place that scavenged aisle is yelling at me- THINGS ARE NOT NORMAL. AND THEY NEVER WILL BE.
Yes, we create our new normal. We're very happy here. But I'm also part of a club. It's a club of parents who might deal with death. Parents who have dealt with life and death decisions. The shortened life span of my child. I have friends who've lost their children. This is the part of my everyday reality. And I want a pass. I think we all deserve a pass.
Can we have it both ways? Can you treat us normally and give us a pass at the same time? Can you laugh with us but also tread lightly and forgive us and excuse us if we don't meet "normal" expectations? I'm not sure. Will you let us be petty about something because it feels like something normal people would do? It's not a life decision. It's not about safety or medications or the future of a child. It's just pretending to be normal for a second.
Or no. Maybe we can't have it both ways. Everyone has their tragedies. Are mine any greater than yours? Maybe we do have to choose between being treated like we're "normal" and held to the "normal" standards of how a human being should act. Choose that or be treated as the sad mom of a disabled child. Definitely don't want that role.
I want to laugh and tease and be petty about things. But I also want an addendum where you remember the gravity of the reality we have ahead of us and the reality that was put behind us. A wise woman once told me "it'll all come out in the wash!" So at this point in my life I look around and I'm surrounded by people who are just what I described above. They know my heart. They know our family. They forgive. They understand. And they laugh a lot about petty stuff.
I get it both ways.
Friday Night Lights…at the Fair
1 day ago