CryingBehindMySunGlasses

The saying goes that kids don’t come with an instruction manual and damn if that isn’t the truth. Before now, the physical part of JoJo’s journey was the biggest focus. We saw glimmers of his frustration come out with the falls he would take, not being able to keep up (only at times) with his brothers, or when he drops something, but nothing has shook me more and left little scars on my heart than how heavy it feels to hear the comments from him now.

I post mostly about his successes, the pieces to his journey that are beautiful and only touch very vaguely on the hard parts. It’s a way of showing his progress without seeming negative but also to keep it light. There is so much joy found in and around all of the hard moments but what most don’t see are behind the scenes.

“Why am I different?, I don’t want to be special anymore, My legs can’t dance, Can Santa bring me shoes like my brothers?, Why am I like this?, Ugh, my balance!!, Why did god give me CP?”

All moments in time where I wasn’t ready. I wasn’t ready to combat these comments and what goes along with each one. The emotional piece of his journey far outweighs the physical at this point. He is aware that at times he can’t keep up with other kids or his brothers and man does it piss him off. In turn, there’s a whole new attitude we are seeing and there are more times than not that I question if I’m strong enough to handle it. Staying positive for him is the best thing I myself can do. It not only helps me but it trickles down to his brothers too. It’s not easy dealing with the outbursts when he gets frustrated because when does it ever help to say “calm down” when something is making you mad.

His body is constantly working against him and will always be that way. We have found a plan of care that truly helps and is the best route for him over time with the botox injections he receives every three months. The mental game we have to help him prepare for going into his injections is something fierce these days. I thought I had been through some of the hardest times thus far with him and this last round just 3 weeks ago still haunts me. My heart hurts from how upset he got himself before the doctor even stepped foot in the room, having to physically lay on him with my whole body to keep him calm and talk him through it. The comments he had no clue he was saying in the 45 seconds it took for the doctor to do all 10 injections broke my heart.

So, when it all feels heavy, we pause. I pause. I stop life for me, for him, just for a few moments. To let him know my heart feels what his does. To give myself time to process it all. To cry when no one is around, the hardest cry that leaves you in a fog and with a headache for days. I find my calm so that I can be his backbone while he navigates the new territory of feeling different but knowing he is loved more than anything. I try to tell myself that someday when he is grown he will thank me for making him do all the hard things, just as any parent will hope for with their kids. But for now, when it just feels like too much, I will continue to pause, hold that strong little boy as tight as I can, breathe, and find some bigger sunglasses for next time!

~ The Tears You Don’t see