The Struggle Bus

I’ve been struggling lately. Struggling with worry and anxiety. Letting the what if’s back into my head after they’ve been gone for so long. I worry about Solly not making any more /enough progress, about what will happen if and when we decide to let him start nursery school, what will happen if he never walks or talks or learns how to take care of himself independently. If he doesn’t learn how to walk on his own, will we have to move to a more accommodating house? If he doesn’t talk or can never coordinate his hands with what he’s thinking, can he learn sign language? How will he communicate? There are so many unknown variables in his life that sometimes I just can’t process them all.

Over the past few months, I’ve been spending more time on Facebook support groups, trying to research what others are doing to help their children keep progressing. I’ve come up with a number of new things for Solly to try, but I also see other children making so much great progress that I start getting down on myself for not doing enough for Sol. Maybe if we do more therapy at home, if we found more hours in the day to work with him, he’d learn to use his right hand or he’d be able to walk independently using a gait trainer. Maybe he’d start talking. Every night, I wake up in the wee hours of the morning with all of these worries running through my head.

But then, as I worry and worry, I start to think back to his time in the NICU. The night after Sol was admitted to the NICU, doctors told us that if he even survived his strokes, he wouldn’t be able to hear, see, eat by mouth, walk, or talk, he’d essentially live his life in a vegetative state. I think about what his MRI looks like – three huge areas of his brain consumed by a daunting black nothing. And then I realize that Sol has already defied so many odds. He’s far from a vegetative state. He’s mobile with his army crawl. He eats by mouth – heck, he even feeds himself and has started drinking from a straw on occasion. He communicates with a nod for yes and a head shake for no. Over the summer, he started sitting independently to play with toys and is well on his way to making an independent transition from his tummy to sitting. And, most importantly of all, he’s loved, he knows he’s loved, and he knows how to show that he loves back. Not to mention that he is a unicorn of children: he is THE most good natured two-year-old I have ever met. And I’m not just saying that because I’m his Mom. He really is! I am one lucky Mama.

I write this post not to garner any pity or to try and get any reassurance about how well Sol is doing. I KNOW he’s doing amazing things and I’m pretty sure that we’ll continue to see gains in areas, even if they are small and unexpected. (And speaking of which, I promise that I will get back to Solly updates soon. As soon as I quit worrying so much, I hope to get back to writing. Although we haven’t hit any major milestones recently, we do have much to tell!) I write this because I know other special needs parents go through the exact same worries and sleepless nights that I do. In fact, one of my good friends who has a stroke warrior that is doing amazing things recently posted similar worries on Facebook, which prompted me to write down my own thoughts. These fears and worries are a part of every special needs parents life, and unless you have a child with extraordinary needs, it’s really hard to completely understand the worry that comes along with this type of parenting. But, for any special needs parent reading this post, know this: you aren’t alone. I get what you’re going though – I really do, and so do so many others. My advice to you is to live in the moment. Focus on daily smiles and victories. Try really hard to think about the good stuff and all the barriers your child has overcome. You might just realize that things don’t look as bad as you initially thought and no matter what the future holds, you will get through that uncertain future and make it your own. I promise you – it will be ok.

One of the things I’ve heard so many special needs parents say about their kiddos is that they now have a deeper appreciation in life. When I first heard this, I didn’t get it, but in recent days, I’ve found this sentiment to be true. I find that I no longer fret over the petty, silly stuff of life. Things that used to be such a big deal just aren’t any more. Now, life is all about laughter and finding our happy – and that makes for a pretty good life.

And because no post is complete without pictures, here’s a glimpse into our life lately:

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