Field Day

I am considering leaving a day early for Disney so I can avoid sending Robbie to school on field day.  I am just so worried he will get hurt or worst yet have to sit on the sidelines and feel different.  I want to protect him. I just keep thinking what I wouldn't do for a couple more years of not knowing.

I just sometimes can't figure out how to accept this.  He was fine and then he wasn't anymore.  I can't say he's healthy.  I miss saying at least we are together and healthy.  I get stronger everyday, or at least I force myself to think i am. This is so random so unfair I just I  can't believe its happening.

I am so worried that we are going to have to tell him soon.  i don't want to.  Shelby and I are so afraid and sad and I just don't want him to feel that too. He is such a rambunctious kid and even though a year ago that  would  stressed me out now I cherish it because I don't know how long he will be like this.

lately I keep thinking of the time he was born.  We were going through some serious financial hardship and he cried all the time.  Neither him nor I slept much the first 5 months. I feel so guilty that I didn't enjoy that time more that I complained so much about being tired. It sounds silly but i had 5 years where he was just my kid.  There were no labels or IEP's .  No steroids and low sodium diets.  I feel so robbed now.  I think what would I have done if I had known.

I would have taken more vacations.  I would have spent more time w/ family.  I would have yelled less.  I would have played cars w/ him more.  Stressed less about the little things.  I would have made bigger grander birthday cakes (okay not really he doesn't like cake) I would have complained less when he curled up next to me in the middle of the night and stole my blanket.  Not that it matters because I can't go back.

I miss normalcy and I don't think I have the words to explain what I mean by that but God, I just miss it. I am having a rough couple of days having a medical issue of my own, taking Madison for a well baby visit, learning how to do heel cord stretches for Robbie, Shelby having job anxiety,its just a lot. I am not the strongest person and I keep calling on reserves i am not sure I have to get through each day. I'm tired.  Sleep just never seems restful anymore. I just want a cure. I want to watch my baby run.  I want the life we had before. I want life not measured before and after December 15th, 2011. most of all I want a tomorrow for my boy.

Some Times It Just Sucks

We took Robbie to the doctor today because he has a nasty cold.   As we sat in the room waiting for the doctor my mind drifted thinking how much time we have spent sitting in rooms like that recently.  i suddenly had an overwhelming urge to cry. How I miss the days af simple sick visits w/ an occasional well baby visit thrown in.

In the last few months I had forgotten what its like to go somewhere where people know your family a little.  To see someone that seems to genuinely care how my baby is.  As we were leaving we ran into the doctor that ordered Robbie's first round of tests.  She talked to him asked him  how he was.  She looked up  at us and said how are you doing?  I shrugged my shoulders, bit my lip, and said okay.  She hugged me and said"I know, as good as you can be." and smiled a sad smile.

By the time we got to the front desk I was in tears.  I miss being good, I wonder if I will ever be good again or will my life be just as good as it can be considering, for the rest of it?  Some days even though I am feeling stronger I still feel so alone, so helpless.  I stare at other families so jealous they aren't having to fight this battle, wondering if they look at us and can see we are tragic.   The family in front of us was taking forever to check out, I kept staring at the sons calve muscles and I was so jealous that his weren't enlarged.  Then I felt like a horrible person.  I don't want to wish this on anyone else yet a small part of me does.  I am so tired of all of this today.  I just want to be  normal again.

I don't mean to whine but some days I just feel so sorry for our family and my son.Some days I just want things to be different.

Team Awesome

We raise nearly 3000 for the MDA this year. The total from the Atlanta Muscle walk was around 155,000.00. Thank you everyone that supported our team and all the other teams.  Robbie held my hand and walked this years Muscle Walk, Kelsey and her friends carried our team banner.Shelby pushed Madison  n her stroller and I was surround by some of my closest friends.   This was a beautiful and strengthening event for me.  Shelby and i realized we part of a small but determined community now.

Robbie's Team Awesome is not ending here.  I am so ready to fight this disease.  I am so excited about the exon skipping trials I have read about.  i thought I couldn't fight but the truth is I just have a different fight to fight. People need to put faces on this disease. They need to understand the randomness of this disease.  We need to stop this disease. No family deserves this feeling grief Shelby and are I working so hard to overcome.My baby wants to be a cowboy this week and he deserves the chance to do that. All of our children deserve a chance to grow up to reach for the stars.

I am going to hope because Robbie needs me too. I am going to pray even though I am still so angry w/ God.  I am going to be strong when my family needs me to be and I am going to fall apart when I need too.  I am going to demand competent medical care. i am going to try to focus on today and hope for a different tomorrow.  I am going to me involved in saving my son.  When he was that NICU and I had to sleep in that closet on a cot  I didn't back down and I won't now.

I am going to cling to the love and support from my family and friends.  I am going to be thankful for the people we count on.  I am going to forget past hurt and differences and be grateful for the present.  I am going to call my Mom when I need someone tell me I am still normal.  I will call my Dad when I need someone to tell me to think positive.  I am going to stop referring to our families as his and mine and refer to them as ours.  I am going to go out w/ the girls and drink a few when I need it.  I am going to laugh and love.  I am going to cry and yell.  i am going to smile everyday.

I didn't ask for this life and I am pissed it is the one I have but I am determined to make it mean something.  I am going to show Robbie that we are fighting for him.  I am going to help him fight.  i am going to help my girls fight.  My beautiful girls that love their brother so much.   My sweet Kelsey that just when I think she isn't getting it she does something amazing. I love to watch the three of them in the backyard exploring, the girls naturally adjust to Robbies strengths, they are such good sisters.

Please join my fight.  it doesn't have to be money.  tell people about Robbie. Tell them how important those clovers are.   Awareness and research that is what have right now and that is what I am fighting for. Robbie deserves the chance to be a cowboy, all kids o.

Make a Muscle. Make a Difference

Today Robbie wasn't different.  He was special. He wore his favorite color and he grasped my hand.  I thought seeing kids in wheelchairs would be too much to bear but i looked at their faces full of happiness enjoying this day.   I found comfort knowing that even though this world isn't the one i had planned for him its still kind of beautiful.  Hope was boundless today and it felt tangible.

Today i saw Kelsey just 8 years old grasping the enormity of the situation and being damn proud to walk.  She could have just signed her name to the banner but next to her brothers name she wrote, I love you. I was so proud to see her decked out in orange ready to fight w/ us.

Today my family in friends walked in honor of my little boy.  I am so excited that we raised nearly $3000.00. So grateful for every single donation, every dollar takes us one step closer to a cure.  Every person on our team  raised awareness and that is a gift I cherish.

Today I thought of something my brother said a few months ago:"People can be really great when you give them a chance to be."  Some times in life we forget that.

Today when Robbie and i were doing the YMCA, i smiled a real honest to goodness feel it in my toes smile.  He wasn't my son w/ the horrible disease he was just my Robbie and I was grateful to call him my son.

           

The Hand Holding Mine...

Okay please excuse the mushiness i am about to share in this post.
 Robbie's CK levels are extraordinarily high, with the combination of this and his symptoms I feel fairly confident saying we are dealing w/ a case of Duchenne Muscular Dystrophy, said the doctor. I started to feel weak all over i wasn't scream and crying which even then I couldn't figure out where the calm was coming from. Shelby squeezed my hand hard and tight he was willing me to be strong through our hands.  The next few minutes were a blur, his hand holding mine, the shock  just running through me. Eventually they gave us a moment alone...

I sunk into his arms, "not my baby" I whispered.  he held me and we cried the kind of tears you can only have in a minute like that. I looked up at him and I saw my pain in his eyes. he held me while I cried, he cried too.  When i stood up I made some joke.  The tension was so thick.  My mom was in the waiting room.  I wanted to go to her so bad but I didn't because I had to break her heart too,  It was 10 minutes before they came back.  We were calm and collected the rest of the conversation I can't remember.  i know Shelby held my hand keeping me in the moment getting me through it.  I went out to my mom, i could barely talk.  I didn't really have to we all knew what they were going to say and now it was real. we were going to slowly horribly lose this sweet amazing boy.

The next few weeks passed in kind of blur, surround by our family first in Ohio then Michigan we got through those first couple of weeks.  When we got home we had to learn a new way of life.  I am not going to lie I was pretty useless the first 2 months.  A lot of things fell to Shelby.  He never judged letting me find a way to cope.  He encourages my blogging telling me that I am helping him putting my words out there. He gives me strength. I could not have made it here w/o him.

I met Shelby when I was barely more then a kid.  He was older, done w/ college, had an apartment, and for the first time in my life I  felt smart.  He always says people don't know the real me like he does.  I guess that's true.  I never censor what I say to him even if that something embarrasses me.  In him a found a man when before I had only known boys.  Our love was so true so fast a lot of people questioned it.  We didn't back down and we got married quick, had kids quick, and frankly grew up together.

The news of our child's illness could have surely driven us apart.  We fought a ton the first couple of months.  Sometimes all you can do is yell at each other because there's no one else there.  Sometimes we would be in the middle of an argument about politics or something equally stupid and we would just start laughing.  Why are we fighting?  I would ask and we would agree it was nothing and hug it out.  I don't know what the coming years will hold but I do know the hand that will hold mine.

I am sure he's going to be super happy i have chosen to write an entire post about him. I am so in love him even now as I struggle to find happiness every day i am constantly surprised by the amount of joy just being his wife gives me. In a way this horrible  disease has shown us just how deeply we love one another.  I am so grateful he sent me a message on that horrible ghetto match making website.  So glad we met in a steak and shake parking lot .  I love you Shelby.  Whatever else happens thank you for sharing this life with me.

Choice

There is always a choice in life.  Always a a decision that takes you one way or another.  Sometimes we make a choice and we don't even know we made it.  I  have found myself at a crossroads I didn't think i would be at but really why would anyone consider this to be a place to end up?  I have decided that I will fight.  I refuse to be powerless any longer.

I am going to do everything I can to aide funding for clinical trials, research, and treatment.  I don't just want my little boy better. I want no one to ever feel this sucker punch to the gut Shelby and I are reeling from.   It is my goal to not only blog about our journey as openly and frankly as possible but to also make a difference.

I am not going to shy away from the realities of my feelings because I do honestly feel it is helping me and it needs to be said.  I am not going focus only on the positive because I want to be honest and i think you can't have light w/o darkness. Right now I am feeling very positive for the first time in months.  We raised a lot of money this past month for 2 different organizations. I am so proud of my family and friends, and everyone that helped us accomplish this.

i still have moments of darkness, days i don't want to get out of bed.  I am still not on speaking terms w/ God and it takes everything I have not to pull over and let the church w/ the God is Always Good sign know that sometimes god isn't good.  So many people have suggested I turn God right now but I am not sure why I should when he has picked my child for this disease and that this disease even exists. I know that pretty offensive but I mean it when I say I won't sugarcoat what I feel.

I have hope again something I wasn't allowing myself to have at first.  I look at Robbie and my girls and i realize for them I must find a way to hope.  I can't just sit back and let this disease claim my child.  i am not going to accept a shortened life.

In the worst way imaginable I have found a purpose in my life. This is not the cards i wanted but it is the cards I was dealt.   i don't know how to accomplish everything I want to right now but I am going to start researching and finding it out.  My son wants to be a cowboy/police officer/fireman and he deserves a chance at his dreams.  It is my job to give him the chance.  I am ready to fight.

Hero

Last September was the 10 year anniversary of 9/11.  Shelby and I watched a ton of specials about it.  We watched w/ the kids.  I remember Kelsey was scared and so we talked.  I told her how I felt that while this horrible terrible  thing happened and we needed to remember and memorialize the lives lost that day we also needed to celebrate the normal everyday people that were heroes that day.  I truly believe that battles are won by small people making decisions and choices that change the course of history.  There are many heroes in my life and not one of them is rich or famous  but they are all my heroes ,they are making a difference in my life.

The friends that have done so much when they didn't have to.  Honestly, I was terrified of what it would be like when we returned from our Christmas vacation.  The night of the MNO (moms night out if you aren't up on mommy lingo)I wasn't sure I wanted to go I felt so alone and I wasn't sure I could go and laugh and drink, i just didn't think I had it in me.  Then all of you wrote such sweet things, you had contacted so many businesses, you gave me and my kids presents,you  cried w/ me. You got me a free tequila shot.  I have never felt such a genuine outpouring of love and support and i could never use enough words to explain what it has meant to me. You didn't stop there.

You have gotten me through the last few months.  The messages, cards, texts, gift certificates, they always come when i am at the lowest and they always give me a reason to smile.  Anything I have asked of any of you , you have jumped right in and helped.  the fund raising, the walk, the garage sale, you have renewed my faith in humanity.  Thank you, i  am in awe of your awesomeness.

We are just about 1000.00 over our goal for the MDA  muscle walk.  My friends,family, my parents co-workers, the family and friends of my family and friends, you are my heroes.  You have made a difference in my life and the lives countless other families in my situation. Thank you.

Nicole, the pictures you took of my family, the way you captured robbie's personality, your generosity,  your kindness, you are my hero.  I hope that I can find a way to pass that kindness on to someone else and I will always be so grateful to you.

I hope that if there is anything to take from this post its that we all have the capacity to be someone's hero. That simply saying you are thinking of someone or offering your support is enough.  So many times in my life I have stayed quiet when I should have offered a kind word.  Now I know how very important those words are.  How just little things can pull someone through very difficult  times. 

Dream

My little boy dreams of being a cowboy, flying by himself to see his grandparents, and growing up. On December 15th, I feel like he lost those dreams before he even got to reach for them.  I hate feeling this way. Sometimes when we are at a therapy appointment and they are talking about how much he is improving walking up the stairs i cry, because it doesn't matter eventually he wont even be able to do it all.  Then i hate myself because i don't want to give up on him.

There have honestly been moments lately where for brief moments I have forgotten what is happening.  i feel like those moments are are always being stolen by him falling, or call from the doctor, or an ad on a website.  So glad google keeps track of my searches so I can be bombarded with DMD ads all the time.

Sometimes I dream that there is a cure or something that slows this down that gives him more time.  How I wish someone could fix this before he even needs to know.  I still I just don't understand how this happens.  Why it is happening to my family or how I will ever come to terms w/ it.  People tell me it will get easier but right now I can't see that.

It's simple I do not want Robbie to die slowly while I sit powerlessly on the sidelines.  How does a mother accept that?  The little boy that just walked in my room at midnight because he missed me,he deserves a life. How can God not see that? Yes, he can be a pain in the butt, he can push buttons, and he can whine, but he is also sweet, loving, and adorable.

I used to dream of the future but the 1st thing you learn when a simple test takes away your child's future is that your families life is not measured like that anymore.  We don't have a past, present, and future. Only a present.  Life is too short to hold on to old pains and the future is to scary.

I wish there was more I could do then a blog and some charity things.  I wish I had some kind of genius medical gift and I could cure all the little boys and give all the mothers their smiles back.  I know I miss really smiling.  I miss feeling joy.  I miss my faith.  I miss my little dude's future.  I miss the daughter in law I will likely never meet and the grandchildren i won't get to have. Mostly deep down I dread the day he won't be able to offer me his fantastic hugs.