Sunday, March 6, 2016

The Cost

Nobody ever talks about the cost of things. There is a reason why they say special needs parents often have PTSD but no one wants to talk about it. This last visit with Kreed in the hospital was tough. Every time I close my eyes or things are silent, I just hear him scream over and over again. Or when I look outside at the backyard I see where he had his seizure and stopped breathing. 
A lot of special needs parents operate on 3-4 hours of sleep or less. Does anyone wonder what that does to our brains, body and life? Yet you'll see that same parent smile and say she's fine. But we aren't. 

Or when alarms beep at us at 2am telling us our child is having a seizure, or low blood sugar or oxygen desaturations. We live in a constant state of fear for our children. But no one talks about that. If we miss a falling blood sugar, Kreed could die in his sleep. That's also the reality for so many parents with kids with type one diabetes. Kreed has hyperinsulinism so we deal with constant lows. So no, we don't sleep or rest even when it looks like we can. 

Then comes the daytime after a night of little sleep. Either because medically we can't or our kids start bouncing off the walls at 3am and don't sleep so then we have to protect them from getting into things all over the house or trying to escape the house. 

We love Kreed and do everything we possibly can to ensure he has the best life possible. He didn't ask for this life and to be born into the broken body he has. We will never stop fighting for him, loving him, caring for him and making sure he lives one hell of a life. But at the same time, no one talks about what happens in the times we are alone crying and wondering how we can possibly make it another day or fight another doctor or stay up all night another night checking blood sugars. 
And right now, every time I close my eyes I hear his pain scream as he gets his infusions to end his status migraines. Or the way it felt to hold his lifeless body in my arms. These are the moments we don't always talk about because it is so hard. We are conditioned to tell everyone we are fine and okay and we can keep going. Because what choice do we have? We work every day to keep our children healthy and happy no matter what comes our way. People always talk about taking care of yourselves to take care of others, but the majority of time that's not even possible. Some people don't have extra help at home, either due to lack of services or wait times for services. So we just do the best we can do and make sure everyone knows we are okay and will keep helping our children. 

We don't get to go out and have dinner or see movies. We don't get weekends away together while Kreed is taken care of. Our life is Kreed. Maybe one day when he's more stable we will get those moments. But does anyone wonder what that does to you as well? No sleep. No time. No togetherness except bonded in the stress of a child. 

No one talks about the cost of being a special needs parent. It doesn't mean we love our child any less. It doesn't mean we won't fight like hell for him. It doesn't mean we will let his medical conditions overtake him. But just as there is a cost to him having such a broken body that can't do the things he needs to do, there is a cost to us as his parents and our mental stability. The sleepless nights, the aching muscles from holding him down during another pain rage, the lack of togetherness, and the extreme duress our bodies and minds are put through...that is our cost and some days it is more than we can bear. But you will never know that. You'll see me smile. You'll see me interact with Kreed with no trace of tears. You'll see me lift him up and keep getting him to shine. You'll see me wipe away his tears, the blood and help fix him up. You'll see me work to keep him active and busy and happy. You'll see me help him when it's hard. You'll see me trying to think of new ways to help him. You won't see the tracks of my tears, you won't see the blood I cleaned off myself, you won't see the copious amounts of Advil I took for my aching muscles, you won't see my tired, hurt eyes (but you may see my black one ha)
Because I am fine and he needs us right now more than anything we need. He is in pain and hurting. So we love, we love, we love and we pick up the pieces so that our boy may one day smile again. And we keep going like a force no one has ever seen to keep him well, make sure his doctors listen and to find our way back to his dimples. 

But don't ever deceive yourselves when you see a special needs parent smiling. They bear costs that you will never know about and may never understand.