Last Monday he went in for a sleep study and it was found that he stops breathing at different times during the night. Yet one more thing this child has to battle. I about cried on the way home from the sleep study envisioning this new journey he is yet again embarking on. And all the other journey's he has been taking already that were difficult enough.
And then I was watching him watch Toy Story for the 34,976th time. And how much joy he was still getting out of Woody and Buzz and how happy he is to watch them. Let's face it, Kreed will be with us for the rest of his life, we aren't worried about independence outside of the home- with his medical issues and communication issues, his life is here at home. The independence hope ship sailed long ago. And that's okay- who wouldn't want those dimples around for life? He is my right hand man and my forever wing man. This took surprisingly a lot of pressure off of things- I know I have many, many, many years to teach this child the things he needs to know. But right now...the only thing I want for him is to be happy. Period.
He is in pain every day. He tells me. You can see it in his face. Or take one look at his legs with the blood pooling and toe curling and it's miserable. He doesn't understand what's happening to him always or why he can barely walk or why he is utterly exhausted. Yet he still gives us those amazing dimples when he smiles. Because sometimes it just about being happy.
So our focus right now is on this kids happiness, what activities can we do throughout the day that will ease his pain and make him happy. Am I going to spend hours working on whatever skill or make him sit through a few hours of home school? Nope. Off to the park we go so I can watch his eyes light up when he's swinging high. In the grand scheme of things, in Kreed's life right now he does not need to be therapied to death, or taught things ad nauseum. Right now, he just needs to experience happiness. We have time to teach him math or reading or writing. Years in fact we have. I have no time table. Kreed learns things as he needs to learn them. Before he began to lose motor function he was learning to read measurements off boxes of sugar cookies and learning some basic meal prep. But then disaster struck and his health took a turn for the worst. So would I rather him labor over learning measurements or just experience his happy smile when he sees I am making him cookies? Pretty sure I want the smile. Because it hurts for him to stand for long periods of time, it hurts for him to walk. So right now, it's about being happy.
We aren't in an emergency stage anymore. Kreed is 16 years old. I have a pretty good idea about how I want the rest of his life to go. Everyone talks about acceptance and awareness etc etc. etc. I don't get into much because I don't want to. We live with Kreed every day and try to make his life better. Period. There is nothing we wouldn't do to help him. So there is plenty of acceptance and awareness to go around. We accept how this life will go. If I could take his pain away, I would in an instance. If I could make it so he could communicate more effectively, I would do it in an instant. But we don't live in that world- we live in his world which right now consists of pain. So yes, right now we are all about making him happy.
Back to his life and happiness and communication. We are always teaching Kreed- but sometimes the lessons he learns is about compassion, understanding, trust and...you guessed it...happiness. So when this boy tells me his legs hurt, I will then do everything in my power to make him feel better no matter what. If he's struggling to communicate, I will help him through it. If he is having a melt down because his body hurts, I do not get angry, but I help him through it with compassion and understanding. There is a time and a place for me to be a hard ass on him and there is a time and a place where he needs love more than anything. That time is now and that is what we shower him with. Sometimes I may lose my cool, but for the most part he deserves for me to remain calm no matter what he is doing. Because hey, right now it's about being happy.
Autism is probably the least worrisome thing about Kreed's life. He has to fight hypothyroidism, seizures, an immune deficiency, a metabolic disorder, Addison's Disease, and now...sleep apnea. And he does it while still being able to smile like this: