Writing for me is so much more than just 'sharing a thought'. It's literally getting it out of my head. When I write, I do it primarily, for me. So the thoughts, concerns, worries, anxieties stop bouncing around and echoing in my mind - they are out - on solid ground, being in black and white on the paper...or er, screen.
Lately, I've been tired. Not like, I went to a party and now I'm a bit hungover, tired. More like, the newborn woke up 7 times last night and my bones hurt to move kind of tired.
What has me so tired and weary?... I'm sure you're wondering. MY HEAD. It must be a woman thing to get all caught up inside your head. The plans, the lists, the emotions, the worries, the schedules, the chores, the to do's, the activities, the appointments, .... need I go on?
But what I'm MOST tired from is the thought it will never change.
With our neurotypical kids, you know that "this too shall pass". But I'm tired, like really really tired, from the thought that what if this doesn't pass? What if this is the full potential our son with special needs will ever reach? Waking up and walking the therapy dog, training the therapy dog, making breakfast, helping him get dressed, making lunch, making dinner, going to therapy, going to activities, explaining why he can't be in the same skating or hockey program as the other kids.
I'm tired of being his playmate. He doesn't get invited out to play. He doesn't get invited out to parties. And now I can 'blame' it on COVID, but the truth is, no one wants the kid with special needs at their birthday party. And that kid is MY kid.
And then I get frustrated too. The monotony of it all. And then I get sad. How could I have these feelings for someone who is so good? So innocent? So pure.
The ironic thing is that I started this post on January 15th...and this morning I woke up early just to write. (I wanted to get some movement in there too...but we'll see what we have time for)
I know now why families with children who have special needs get respite care. Because it truly is exhausting.
I'm also tired of being alone. I have my husband with me and that we are solid - even though that is a statistical miracle. But I'm tired of not having another mom who I can relate to, someone who I can say, "don't you hate it when..." or "isn't it totally amazing that this happened?" Our totally amazing's are just someone else's every day - from three years ago.
And then comes the guilt tired. How could I ever EVER feel this way about a kid who is just so honest and pure. He can't lie. Because he's afraid of going to hell if he does. He wants everyone to be happy and carefree like he is. Even as a young toddler, if he saw another child crying, he would go over and rub their back in the hopes that would fix whatever was bothering them. When he was about 5 years old, and still not struggling with being verbal, I asked him why he did that.
"They know they be not alone"
In his own broken words, he wanted them to know that while they were suffering, they were NOT alone.
The thought of that alone makes my eyes water. He can barely speak. People pass him by all the time for playing with him, choosing him, or just even talking to him. But when someone else was suffering all he wanted was for them to KNOW that they aren't alone.
Sometimes I'm annoyed and a lot of the time I'm tired. But most of the time I really think that I am not worthy to have such a wonderful and kind soul as my son.
Wouldn't it be wonderful if during this time of COVID, no matter what your beliefs are, antimasker, antivaxer, pro-mask, earlybirdvaxer, WHATEVER you believe, wouldn't it be great if at the core of it all, we just were WITH people. Said nothing but just were WITH them so that they knew they were not alone.
Let that sink in for a little while.
