My son is a middle child. My only boy and he is a mama's boy. He loves pushing peoples buttons and he is impatient to a fault. He is also 1 in 3600 under boys born w/ duchenne muscular dystrophy.
He struggles to dress himself. I don't know if he will ever ride a 2 wheeled bike or catch a football. He can't write very well. He falls down easy. He tells me he wishes he didn't have muscular dystrophy.
He dreams of a future and I pray we find a way to give him a full future. He is a little brother beloved by his big sister and challenged by his little sister. He thinks his Daddy can do anything. he is without a doubt the best hugger ever.
I want you to know that is he is scared. That he didn't do anything wrong, I didn't do anything wrong. Something happened when the cells started dividing. It seems so simple it feels like there should be a simple answer to fix it but so far there isn't even a complicated answer. There is hope mingled w/ an awful lot of hopelessness.
I want you to know that I'm scared. That I am angry. That I don't understand why the world has largely ignored this illness. This illness afflicts children. That it slowly robs them of their life after slowly robbing them of every other ability. I am mad that I didn't get involved until my son was diagnosed. I am angry that when talking to a nurse in the emergency room she mixes up MS and DMD. she isn't the first but these are 2 different conditions and I shouldn't have to clarify. I'm sure she doesn't know how much it costs me to clarify but I'm still angry.
I am mad at a school system that doesn't offer my son enough help because he isn't handicapped enough. I am angry that bullying is still largely ignored. Angry that people can't teach their children to be decent human beings.
I want you to know that I am sad. I can laugh and smile and enjoy life but I am and will probably always be sad this is happening to my little boy. That even on the best days w/ the greatest successes it still looms large in my heart that progress will always be temporary. At least until there is a cure.
I want you to know that I believe a cure or a treatment is and will be possible. I want you to know that I want to save my little boy and I hurt for all the moms that came before me that i know how lucky I am that we are so close to a breakthrough.
I want you to know that I am happy and blessed. I am sad and frustrated but I am loved. That I have a strong, brilliant, beautiful man in my life that shows me every day what is to loved by the person that was made to love you. i have parents and parents inlaw that do everything they can to support us. i have friends that I can say anything too and know they won't judge me. I have 3 beautiful children that make me smile every single day.
I want you to know that Duchenne Muscular Dystrophy can happen to any family. That we have to talk about it, we have to make it a household name. We have to demand funding, research, and awareness. I want you to know that every time you read my blog or share a facebook post you are helping us get closer. I want you to know that I appreciate every single one of you that read this. I am thankful to every person that helped us raise over 3500.00 this year for the muscle walk.
Mostly i want you to know that if you stumbled upon this blog because you just found out your son is like my son, it's okay to feel everything you are feeling. That eventually you will be able to pick yourself up and be strong. I want you to know that it's okay to cry and yell. It's okay to laugh. It's okay to feel powerless. it's okay to question your faith or your ability to handle this. You will be everything your baby needs even when you feel like you aren't. That being angry, sad, or any other emotion for as long as you need to be is okay. please don't judge you grieving process against mine or anyone else. That you are not alone.
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