I don't know for sure when I broke. I don't know if it was in the moment of diagnosis or before while we searched for an answer. The praying and begging and bargaining I did over those months. Going from doctor to doctor specialist to specialist. Each" there is something not quite right here but we need to do testing" took a little more of me. I thought a diagnosis would give me some magic answer and we would do what we needed to make him whole and then we would move on.
No one told us what they were testing for, which was cruel. I often wonder if they thought they were saving us from hurt, did they think it noble to hand us over to a google search? I knew what the doctor would say that morning. I cried on my knees in the bathroom begging a God I still believed would hear to spare my child. Take me just let him be okay. When they gave us the news it was like our life split from happiness, joy and, struggle but full of color to surviving and gray.
Survival when all around you there is life is cruel. It breaks me apart and I put myself back together again almost daily. I pretend so well. Laugh off the insomnia, Embrace the anger, pack the lunches, take the nap, beat myself up for not being enough on another day and f-ing smile. Over and over again. Fake the happy, please the masses, be okay because you're the "special parent". Please, everyone, stop saying that. This isn't special. It's not an inspiration. You can't put a bow on it and make it pretty. It hurts and I still pray to a God I don't think is there but if he is that no one else I love will ever feel this "special pain".
I used to think just get through this moment and then it will get better but progressive degenerative illness isn't like that. It doesn't get better, you don't start to accept it. You just wait. You wait for the next checkbox. You watch the heel cords tighten, you watch the steroids do their thing, You knew the broken bones were inevitable even as you tried to let him have his freedom, you know what's next and how very far science is from where you want it to be, and worst of all you watch all 3 of your kids struggle to understand that which is senseless.
I like to pretend things are normal, I think any parent struggling with different does the same. We all find a way to live with the different, to find a certain joy in it, but make no mistake I will always grieve for the normal we do not have. I won't pretend this "new normal" is enough because it's not. Children suffering is just not okay.
Maybe I have broken in the years since his diagnosis, as reality has set in and our life started to feel more and more lonely and isolated. Maybe broken isn't the right word? Maybe I'm just different now? It's not that life didn't turn out how I planned, because that happens to everyone. It's that life will never return to normal. In our house, there will constantly be a new normal to adjust to, a new challenge to survive, a new thing we can't do anymore. There will always be a loss.
Thursday, May 30, 2019
Tuesday, May 14, 2019
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.
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.
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