i just want you to know...

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.

Celebrate

Every day is a struggle to find something  positive. My life, my families life isn't what I planned or hoped it would be.  The dreams and plans we made as we started and then grew our family all had to change seemingly out of nowhere. There might have been little clues here and there but honestly I never saw muscular dystrophy coming.

There is a freedom in living life on the edge of tragic. A way of seeing what and who really matter. I constantly have to make an effort to step back and find something to celebrate. A reason to smile.  I can't fake happy so I have to find happy.

 Last night Robbie stood at the enterance to a restaurant with a couple of firefighters he hadn't met until that day and he talked about his MDA camper expeirence and urged people to buy a shamrock and help.  They raised over 100.00.  Last year in the entire month of March they earned 92.00.  Robbie helped to make a difference last night.

I know it doesn't sound like a lot of money but I don't care it's millions to our family.  Last night this 7 year old boy with all the odds stacked against him made a difference. He put a face on muscular dystrophy.  He made families and co workers out for a drink stop and buy a shamrock. These weren't people that loved him these were strangers many of whom probably didn't even know about muscular dystrophy. 

I am proud of him.  So proud in makes me cry. Today I am celebrating. Last night my kid that works harder then the rest of us did something amazing. He might never raide a 2 wheel bike,  he may never run a marathon, or  run up a flight of stairs, but Robbie is my hero.  

I hate that he struggles with muscular dystrophy.  I hate that there isn't a cure. I hate that all my kids have to live with the weight of this disease. Damn am I lucky i get to be the one he calls mom.  

Under Dog

I don't watch football.  I actually think I like football but I scream a lot when I am watching sports and baseball season is long and my kids don't like anything loud.  So they give me baseball I give up any other sports and we are all happier that way.  I do watch the superbowl. I read the favorite predictions and then I root for the other team.  I like the under dog. I love when the team/person expected to fail is the one left standing at the end.

Tonight while I was making dinner Robbie was helping me clean while we talked about school and minecraft. He asked me if I liked being a mom, I love it came out automatically.  He said "I want to get married when I get older."  I felt the familiar squeeze of my heart the voice in my head prayng he has that chance.   He went on talking about living next door to me, being a teacher, and having a race car. I smiled and said well you will be an awesome teacher. he hugged me and then gave me a lecture about recycling.

I thought about being sad for a minute, about letting the realities of muscular dystrophy crush me, feeling the tears threatening. Then I stopped and I looked at the sweet little boy who had now moved on to box tops and how stupid it is that companies just dont donate the money, why cut them out and send them in? Not this time Nicole, you aren't letting this perfect moment be ruined by this stupid condition. He's my under dog I realized and he has been his whole life.

He struggled to communicate for years and he worked his ass off to improve 90% in 1 year.  He gets outside and climbs on the jungle gym at school. How does he do that when he feels so unsteady?   He has a scar between his eyes from the time I told him he couldnt have something and he climbed the entertainment center.   He isn't into giving up and neither am I.

He wants to go to college and he wants to drive a race car. he wants to get married, have a family and he deserves a chance to do that.   We have to find a cure, a treatment, a fighting chance because thats all my under dog needs. Just a fighting chance.