Sunday, January 24, 2016

Letter to the judgmental...

To the asshole who posted the nasty comment on the last video. You saw twenty seconds of our life. Imagine dealing with someone who is bigger than you are, stronger than you are and who only wants to destroy when they are in pain. Kreed can bite so hard he can almost sever his toes and fingers. He beat his head so bad when we didn't get to him fast enough that he left two large blood filled sacks on both sides of his head. You let me know how you would do trying to protect your child 24 hours a day, 7 days a week, sometimes even through the night. While simultaneously trying to figure out the medical cause that is causing the severe self injury. You have to be a doctor too. Also Thinking about how to situate your home so he doesn't have hard surfaces to hit or put holes in. Or better yet, if you want to make a comment about the way I am desperately trying to control Kreed and prevent him destroying his body even further, come over to my house and take over for just 12 hours, and we'll go take a break and recharge ourselves. Let me know how you deal with his ferocious self-injury from the chronic and severe pain he is in daily and make sure to not sleep the night before or several nights before so you can have the same level of tiredness. Except you can't- you also need to protect yourself and someone else all night for several nights in a row and then do it during the day too. 

We do the best we can every day of our life and it's a miracle that we have gotten Kreed this far. We also eventually find the medical cause, often before the doctors. Or we know what it is but it takes the doctor several months extra to do all the right tests to come to the same conclusion. 

In the ER last night, as four security guards and two nurses are helping to hold him down, they look at me and ask me how we do this at home. Because we're his parents and we don't have a choice but to figure out how to protect him the best we can. Sometimes we fail him and he still hurts himself or us. Sometimes it looks bad form outsiders points of view because...YOU DON'T LIVE IT. Every day. Every week. Every month. Every year. You don't know the heart ache of watching your happy, hoppy boy turn into a boy who hates his body and wants to destroy it and can no longer stand up. You don't know the heart ache of laying on a couch in his room next to his bed, listening for his Bipap breaths so you know he's still breathing or staring at his respiratory numbers all night making sure he is okay. You don't the horror we feel when we can't get to him fast enough and he bites another chunk of skin off or bashed his head in so hard he has two blood filled sacs on both sides of his head. 

Or realizing your once mobile, happy, hoppy child is now wheelchair bound because standing causes him extreme pain. And now figuring out how to modify your home so he can access the whole house without having to stand. 

But please, tell me your judgements. They matter so much to me- notice my sarcasm. Normally I say nothing. I delete, ban or whatever and move on. But every so often, I just feel like I need to let it out. Because I have a right to tell people what our life is like and to show others they aren't alone. Kids like Kreed often aren't talked about or shown because it looks so bad to outsiders. Who have no comprehension of what our daily life is like. You do now, because we are brave enough to show it even though we know we will get our fair share of insensitive comments. But we also know our life can provide hope by documenting what happens to Kreed and what he has to overcome and how we help him on his life's journey- no matter what comes our way. We are honest and true and we open our lives up. 

We are lucky Kreed is still here with us and it's been only because of our sheer determination to give Kreed the best life possible. We don't have the kind of life where we can go out and leave Kreed with someone, or have a fun weekend away or trips or even dinner at a restaurant right now. Our life is keeping our son alive to see another day and we desperately work to get him back to himself when he's lost his way. He didn't choose to have this broken body of his, but we will be damned if we will let him suffer. We will work until he is figured out and giving us his incredible dimpled grin again and hopping high.

The world is full of judgmental people and you sir, are just another drop in the bucket. We will still go on with our lives protecting our son and working tirelessly to get him the help he needs and you will go on in your life continuing to be an asshole and judging people's lives you know nothing about. 

To everyone else, thank you for your continued support and love for Kreed. It's heart warming to see so many people care about Kreed and our family when we're just another family out there with a boy who is trying to find his way in this world. We just happen to film and write about it. I am truly humbled by the support. Thank you from the bottom of my heart.