Today

I'm never going to be an inspiration. No one will wax poetically about my strength and positivity in the face of obstacles. I won't say things are great when they aren't. I won't shrug off my families difficulties with platitudes about God's plans or finding a bright side. I used to feel guilty about that. Like I was somehow to not allowed to face this in an authentic true to self way. Like I owed it to everyone else to be happy. That is silly because at the end of the day my family has to get through this in a way that works for the 5 of us. I don't have to make things easier for anyone but us.

I don't mean that I walk around in a fog of anger and resentment because I don't do that.  But I'm not okay, I honestly do not remember what okay felt like. It is not okay that this happens to any kid. I don't care if there is some figure sitting up in paradise with some grand scheme, This. Is. Not. Okay.  12-year-old boys shouldn't have femurs so brittle they break them twice in 16 months. If this is a plan it's a crappy plan.  I will not accept there is some magic plan behind the scenes that makes this okay because, Why? There isn't a justifiable reason to do this to a child, any child. I refuse to give my faith, my prayers, my hope to an entity that allows my kid or any kid to suffer like this, I'm done. I'm really good at commitment but I refuse to say this is some mystical plan that I just don't understand. And if I am wrong and there is a plan, this plan hurts my kid and I want no part in it.

A cell divided badly and my son has to suffer for his entire life. My girls have to grow up seeing this, feeling this, living in fear. This time when he fell he was at school. The girls and I didn't get to him until he was already in a room at the ER.  I will never in my life forget the terror in my girls eyes.  The tremble in my mom's voice when I asked her to come to get me or the raw pain and fear in Robbie's on the phone when I asked him he was okay on the phone and said: " It, hurts, Mom." Do you know how much hurts to know I can't ever make any of that better? That no one can. That my whole family is at the mercy of this 6th family member none of us asked for.

I feel so alone sometimes, and I know some of it's me because I don't know what I or we need help with.  We need a ramp and a ridiculously expensive van, and someday lifts for the house and equipment that I can't even imagine yet and I don't know how you afford those things and still give your child any kind of life quality. Which is the only thing I feel like I can do?

I am stressed all the time. My husband is stressed all the time and it feels like there is always a judgment to be made about how we are handling everything but rarely a hand up.  I know both sets of parents would walk through fire if it would help so I don't want anyone to think I'm on here blasting anyone.  I feel angry and helpless and alone. It's like Shelby and I do such a good job that everyone just assumes we have it handled. I mean I guess we do but it's damn lonely.

I used to have all these theories on how I would handle one of my kids having special needs but those were all based on 2-hour T.V. movies. The truth is it's just a constant battle for oxygen while we drown in the unfairness of the situation. I wish I could see some light right now, I wish I could feel hope, I wish I could find faith, but I can only be me.