Jerry's kids

When I was in middle school i wrote for the school newspaper.  I once wrote an article about the word retarded. I hate the use of that word its disgusting and discriminatory and it hurts. Why can't we just stop being A-hole, you know?  Anyway I like to believe the world or at least my piece of it keeps progressing further from hate and hate speech. I'm aware for some people that means I'm naive but I like to think it's more like hopeful.

Last weekend my Tigers got swept and and that ended our baseball season.  i was reading a bunch of blogs,  Sometimes I read the comments.  Half way down the comments people we were fighting about an outfielder.  One of the commenter's said : what are you a bunch of Jerry''s kids? I gasped. Did he just insult people using my kids disease?  I was livid and then I saw no one, not one person said a thing.

This sickened me on so so many levels.  I mean exactly what is the insult? Jerry's kids are MDA kids and wow to be as brave and smart and loving as an MDA kid would make us all so much better.  Second it's just not okay to use another person difference as a hammer to hit someone else.  Not sure that makes sense mama bear me is writing this.  Third okay do I need a third? It's just wrong.

It's been making me crazy. I hate things like this. I hate that someone could reduce my son and all the people like him to a 2 word insult.  I see this little boy w/ the sweet smile afraid to let people at school see the stool he uses to get in the van. He's afraid of people like random Internet jerk  laughing at him.  

Sometimes I want to shelter him and his sisters but I can't. All I can do and all I will continue to do is try to make people hear me. Robbie is not an insult. He is a beautiful amazing boy that needs love not hate. So shame on you random Internet jerk and I hope and pray that you aren't raising children to be as ignorant as you.

Small Actions

The world doesn't understand muscular dystrophy. That is probably the first thing you learn after diagnosis. Explaining it and its devastating prognosis is like stabbing yourself repeatedly. That's the second thing you learn. You have to find a way to get the word out it's up to you. That's the 3rd thing you learn.

I don't post this blog, or write about my sons illness on facebook because i want sympathy. I don't need pity because pity will not save Robbie. I need people to know what is happening to not just my family but to thousands of families around the world.  Rare disease is a tough and lonely battle.

If I say cancer you know what I mean. If I say HIV you know what I am talking about. If i say muscular dystrophy you don't understand. That's not to insult you. I didn't get it until I had too. It's not okay for a disease to slowly rob my child of basic functions while the world goes on not understanding.

I have had to gently explain to family members. I have to start talking to my 5 year old about why her brother is different. I have held a 10 year old while she sobbed when the realities of Robbie's disease sunk in. All of that is to be expected but I have also had to explain this to medical professionals. I have had to fight to get changes at his school. I still get phone calls telling me things aren't improving. Like his handwriting or coordination. I have had the transportation people call to ask if he was better.

So I do what I can to get the message out. I will do what ever it takes to make sure someone is hearing me.  I write letters to my house reps and senators. I share everything I can on facebook. I don't hide my emotions ever because people have to see. People have to join me in this fight. This has to happen because it is the only thing my family can do to save our Robbie.

Please understand I know that Robbie's disease is not the most rare of diseases. I know there are so many other things that also need a voice. If somebody decides to make a bunch of people dump a bunch of water on their head and donate money for their charity and it works then they're that much closer to a breakthrough.  If 1 person read about a disease because of that then passes the info they learn on to someone else it will be like a domino effect.  Look at the strives we have made in HIV, Cancer, and numerous other diseases/causes because somebody said something that caused a bunch of other people to stand up and help the cause.

I have seen a lot of people complaining about the ALS bucket challenge. I get what you are saying but I think anything that makes people aware makes us that much closer to a treatment. Imagine being told there is nothing no chance.  What would you do to change that? Would you care how that change came about? Would you be angry that the money that funded the research came from something fun? I wouldn't.

I want to find a cure. I want the world to want to want to find a cure. I want the world to know and I am really sorry if in that quest I annoy you.  I won't stop annoying you. I won't stop trying to save my kid and trying to get other people to join my fight.

I tell my kids this all the time and I truly beleive it. When you look at something tragic you will always see a hero in background doing something simple that saves someone. I tell them this is the thing we take away from the bad stuff like September 11th, or the concetration camps of World War II, even the fight for HIV research.  Small actions can equal giant amounts of progress.

Strength

My husband fell in the garage on March 28th. He had surgery April 8th. It has been a long slow recovery. He has only been back to driving a car for a couple of weeks. I don't know how often I have mentioned this but I have an eye disease that is slowly destroying my corneas and I can no longer drive a car. This was not a good situation for us. On top of all that Robbie began another round of  serial casting, we had an iep, new braces,and we had prepare for summer camp.

We survived. I am so glad we were in Michigan because I don't know how we would have even got him to the hospital in Georgia. Our families helped us so much. I don't have words except thank you which really doesn't seem enough.  It was such a long hard spring for me I just didn't have it in me to post here.

It was hard to see my husband hurt like that. He is always such a rock for me. We have such a good partnership and it has always worked really well. Suddenly it was just me for everything. If I am being honest and I strive to be I wasn't sure I was strong enough to handle it all.

I would never wish this injury on my husband. I love him way to much for that.  I did find my strength in all this. I went an IEP and I got Robbie the services he needed. That was huge for me because I am so shy and it is hard for me to speak up. I went to all the casting appointments, the brace castings and fittings. I took care of 2 people in casts for weeks. It was something that needed to happen.

not the injury but me being more in control of Robbie's disease.

 I am afraid of duchenne. I feel so dirty admitting that. The thought of taking care of him while is body gets weaker scares me.  I don't know how i will do it. I will I just don't know how.  The past few months forced me to deal with the fear.  I had to push past it because Shelby and Robbie needed me to be strong.   I met other moms  dealing with all this. It helped so much to know everything I felt was normal. The fear, anger, hope, and denial. 

Duchenne can be so isolating for a family.  I know in our family this isn't something we have dealt with for generations. it's only us. Even when surrounded by the people we love we  can feel so alone. Sometimes it hurts so bad.  Our families are amazing. I want to be clear here I don't want anyone to ever have to deal with this.  I am jealous that it seems everyone else gets healthy children and I don't. I know that's not exactly true and we all have our crosses to bear . It does seem like the distribution of those crosses is not always fair but that is another blog altogether. 

The past 4 months have really forced me to deal with a lot of stuff I was just carrying around. I think I am a better wife and mom. The weight of everything I was carrying around was slowly drowning me. Then all of a sudden I had to swim.  Maybe its silly to be proud of myself but I am.  I can and did get my family through a really hard time.  

I met another mom from Robbie's school at a field trip.  She was asking me questions about Robbie and I remember saying "I'm sorry I know I bring a room down." She looked at me like I was nuts and told me there was no need to apologize for just talking about my reality. That was like a life changing moment for me.

I don't know why I needed to hear that since my whole blog is basically dedicated to saying this sucks and owning that. I mean its something I have felt very strongly about, not sugar coating my feelings to make it easier for everyone else. On my blog that at least. In my life not so much.  Some people need me to be okay so they don't have to face this. I get it because sometimes I need that to.

I used to get angry when someone told me to concentrate on the positive. Well first duchenne is an awful muscle wasting disease. it will slowly rob my child of every basic function. There is no positive there. I have an amzing little boy. I am thankful to be blessed with him but there is no positive for this disease. 

Sometimes people will tell me "oh don't be sad today, it's a happy day".  I get it. My sadness makes its hard to go through the day pretending there is nothing going on.  The thing is I am never not sad.  I am happy and all the other emotions but I don't ever stop hurting for my child. Asking me to turn it off isn't fair.

I try not to get so upset when people tell me God has a plan. I realize that it makes people feel better to say it. That it makes them feel like they are helping me and I don't want anyone to feel bad for offering me support.  I don't agree at all.  I don't believe in a god that plans this for children.  I can believe there is a God.  I refuse to give my faith to anything that plans this for my child.  I am not going to debate this. That's pointless we all have a right to believe what we believe. 

I think collectively as a society we need to stop pushing this whole look at the bright side mentality. The truth is there are times things just suck. There are times yelling, screaming, and ripping the scab off are the only only way to get through the day. it's okay to not be strong. it's okay to just let me be sad. There isn't anything you can do or say to relieve the pain. It hurts. The guilt, the sadness, the anger it's all part of me.

I am stronger today. I  am more of a complete person and less of the shell I was for a few years. I have found my strength many times over.  I have gotten to a place where I can process my feelings and deal with them. I can feel what I am feeling w/o apology. I still struggle with that. I hate to see tears in another person's eyes and know my words are putting them there.  I can't hide my feelings anymore though my kids need a mom that tells them it is okay to feel.

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.

My annual 14 things w/ a spin

This year I am asking each kid to tell me 2 things they love about each of their siblings and 1 way they feel muscular dystrophy has affected their lives. I am going to type exactly what they say, so this year its 15 things
Madi:
what I love about Kelsey
1.Her sweet
2.and she plays with me
What I love about Robbie
1.He's sweet
2. and he plays with me
Muscular Dystrophy
Um..what? I don't know what that is.

Robbie
what I love about Kelsey
1.she helps me  with homework some times.
2.she plays minecraft with me
what I love about Madi
1.she watches T.V, with me
2. she loves me
Muscular Dystrophy
I can't run that fast

Kelsey
What I love about Robbie
1.His smile
2. the way he talks when he plays video games
What I love about Madi
1. how playful she is
2. How much she likes to cuddle with me
Muscular Dystrophy
How it affects the way people treat Robbie and us.

The question...

We were on our way back form a Christmas party.  I was with my youngest two, Robbie and Madison, in the back seat of my parents car (jeep,sorry Dad).  Robbie in particular had a million questions, for some reason he was really concerned about oxygen levels in the car.  i'm not sure where he comes up with this stuff. Then it happened, "Mommy do some people die from some types of muscular dystrophy?"

I paused, panicked because honestly I thought we had years of research and medicine before I would have to answer that. I thought I wouldn't have to say "Yes sweetie, sometimes from some types." but I was wrong because that's what I had to say that night. Shelby and I from beginning have decided never to lie to him about his condition but let me tell you everything in me wanted to lie. I can even justify if I try a little but I knew I couldn't.

I hate that I couldn't give him another answer because he deserves a better answer. He deserves to hear No not anymore. All kids deserve to look forward to a long happy life even if thats not how it turns out. I think I worried about at 7.  How to get my brother out of my room because he just could not play barbies correctly, how to get those cooked carrots down if we had pot roast for dinner, how to finish math facts quickly, pink shirt w/ black hearts or black shirt w/ purple hearts?

Mortality was never a fact of life for me as a child.  My Grandpa passed away when I was 4 and I think on some level I still thought he was hiding under my Grandma's bed when I was 18.  it is a fact of life for all 3 of my children. Forever, some day, when we're older are not terms we do not use very often around here. It's to hard and way to sad to consider those times so we keep our thinking in 1 year time frames.

I had to stop writing this for a few days because I was really struggling with whether or not this was something I wanted to share.  it was such a quick but deeply personal moment in this journey. After much thought I decided to share this moment because I want and strive to be honest on here. So many times we try to sugarcoat the bad things so they are easier to swallow but in my expeirence that rarely works for me.

For my family we decided the best way to face what is in front of us is being honest and fighting together. This isn't to say my way is the right way for everyone just that it is the right way for us.