Mexico

It's 7:50 he is out of the shower and sitting my lap. He smells of superman soap and strawberry shampoo. We are talking about the xbox game he plays w/ Daddy and Kelsey, they have finally made it to the Mexico part. He's really excited and he's going to show me the next day after school. I tell him we are going to stay at a Mexico themed hotel in Disney, he asks me if there will be cowboys there and horses and is a little disappointed when I say no.

I am trying to savor this moment simple but beautiful. My sweet boy calm and cuddled. I can't though because I am thinking about his cheekbones. They say steroids are going to make his face rounded and I am desperately trying to make sure I remember every detail of his face before it changes. I hate that the treatment is going to change how he looks. Right now he looks like a normal little boy and I don't know how long I have before that changes. Robbie has always been a little guy and it sort of breaks my heart to think he will be changed my the medicine to keep active longer. on top of that the weight gain will be hard on his muscles. i just don't want to forget what his cheekbones look like.

My heart breaks every time I hug him, or see his eyes light up about something, every time he laughs about something until his whole body is shaking. Its hard trying to hope and find comfort in scientific developments and trying to prepare yourself for the currently inevitable early death of your child. Yes I force myself to live in the present to only think a year to five years in advance but that doesn't really change the prognosis. there is no cure and no amount of positive thinking is going to change that.

You know when you have a baby and people especially people you don't know tell you to enjoy it. Most the time it's after you haven't slept for 3 days and the baby is crying and you smell like spit up. it's aggravating , right? Well for me I need to savor and enjoy every moment while dealing w/ the grief and reality of this disease. Some days I do okay and others the sadness fully engulfs me until I want to curl up in the fetal position and cry until I have no tears left. I can't though because i still have dinner, pull ups to change, homework to help with. I want to enjoy every second I have w/ him but that in its self is tragic. I don't want to do this because kids grow up too quick but because my baby may be gone before me.

Robbie said DaDa for the first time at an Applebees in Florida. He loved eating from his first bite of food and it used to be like a full contact sport getting food cooled and on his plate fast enough. When he was 2 out of the blue one day he gave me a huge hug and then said I want to kiss you mama. He loved Mr. Rogers when he was 2 and when he turned 3 he was all Toy Story all the time. He was scheduled to be born I think November 16th but he came November 3rd. Robbie loves to push my buttons and he does it w/ a grin. Robbie has DMD and I don't know if he will ever be an uncle, have a best friend, get a 1st kiss, or a 1st heartbreak.

Remember how I was all into the sometimes? The last few days weren't so much of a someday. All 3 kids were getting over a yucky virus making them all kinds of cranky, plus yucky gray rainy weather and everything caught up to me again. Now Shelby and I are both sick making our home super fun right now.  I just want to scream sometimes.

Words like wheelchair, ramp, and lifts are now part of my daily vocabulary. I hate giving him steroids and I spend my day looking for a side effect. Every time he falls I barely hold my tears back. He told he wants to be a policeman when he grows up. Kelsey asked if he would be an uncle to her kids when she has them. I said yes but in my head I was screaming maybe.

I love my kids.  They have filled my life w/ a joy i didn't know existed.  The only real life goal I ever had was being a mom.  I didn't know it would turn out this way but being their mom is a gift I treasure.  I am determined not fail them now.  I don't want any of my kids to have a life of sadness.  I can't protect any of them from the reality of this situation but I can make sure its not the thing they remember from their childhood.  I am pretty confident a cure or a partial cure or something is going to come out in the next couple of years because well it freaking has too.

We are taking our kids to Disney World this spring.  We weren't going too.  We thought we should save money to move closer to our families and while that is still a goal, its also important that we spend time just being a family having fun.  Disney World has been a huge source of fun for us and I think it will be healing for all of us.

I got my packet from the MDA today.  Sort of comforting and heartbreaking at the same time.  I feel like everyday we get closer to a point where we will have to tell him.  How do you tell this sweet little kid that his future is practically nonexistent. I mean he has a future but not the one most 5 year olds dream of. I dread telling him, I try not to think about it but he isn't stupid  and he's going to ask questions.  I think it is really important that we are honest w/ him.  He needs to trust us and he needs to know that we hurt and we hate this too.  He needs to see us fight for him so that he will fight for himself.

Speaking of fighting... Shelby, Me, and our kids along w/ a bunch of our friends are participating in the 2912 MDA Muscle Walk.  We are raising money in honor of Robbie.  The MDA is one of the first places you contact when your family is given the kind of news mine was.  Please help our team reach our goal of $1500.00  Just click on my blue icon. 

Sometimes...

There is joy in our life. Sometimes we laugh and we don't feel sad. Sometimes it's 3am and I am tired and Robbie wakes up up from a nightmare and I don't want to discuss every single thing he can think of to keep from going back to sleep. Sometimes I am just a normal mom making dinner, telling someone to turn the TV down, yelling at someone to share(I have three kids I do this hourly), and explaining math to my 8 year old. I am not different then anyone else except that my son is sick from a disease no one can stop. This is not about the tragedy of that because trust me that never goes away but the sometimes are important too. I would be doing a disservice to whoever is reading this if I didn't share the things in my life and Robbie's that aren't tragic.

My life is beautiful in many ways. My son is a gift no matter what the future holds. Last night he told me I cook better then McDonalds, and he ate 3 servings of my food oohing and ahhing the whole time.He's always a cheerleader when I am in the kitchen. He always has a question, he has to know how things work and why. He hugs w/ his whole soul it seems. There is nothing quite like a Robbie hug, nothing. Robbie makes me laugh just about everyday, the way he sees the world half innocently and half wise is kind of awesome.

I am sad at some point everyday. I am happy at some point everyday too. it's important to say that. I want everyone to know that while most days the sadness is almost crushing life also has to go on. None of us really know what the future holds. Yes, in my life there are staggering statistics staring me in the face but statistics are just numbers. I am not saying I don't give into those statistics sometimes or that the words fatal or terminal do not come out of my mouth regularly but I work hard to make sure i don't get consumed by that.

I want to take my kids to Disney World this spring. Normally I would list a number of reason why I should wait but right now i say screw it I am going to do it. We want to visit some family in Florida in April and hit a beach so we are going to do it. I know one thing right now and that is that Life is short and I won't get these days back. i guess thats 2 things.

I am still super pissed this is happening. I am very pissed that this happens to 1 in 3600 boys and I barely knew a damn thing about it besides that it sucked. Think how many of you had to google DMD(me too so don't feel bad) now think how many kids are in your school district or your town? This isn't that rare, in my opinion which i realize is a bit bias it is downright way too common.

I want to raise awareness. HIV cases went down by the end of the 90's because people were more aware. People can fight cancer and have a chance of winning now because awareness was raised and people started researching. If I can do anything it is yell at the top of my lungs until things start moving. Don't misunderstand me, I know there are many, many, many amazing people working on this and I don't want to discount their work but I want more of them. I want the world to know this is happening to my baby and it shouldn't be. No family should go through this.

I am walking in the MDA 2012 Muscle Walk in honor of my adorable little boy. I am walking because my family and lots of other families need the MDA. Please help our team. Just click my blue icon and give what you can. It is not about how much you give. Every single little bit will help make a difference to someone like me and my family.

Hope

I am hopeful because it is my only choice. I have to believe that maybe not tomorrow but soon someone will have a medical breakthrough. the only way that can happen is with money. At the end of the day money buys research, research brings a breakthrough. i am participating in the MDA's 2012 Muscle Walk. I am doing this in honor of my sweet trouble making Bubber (my nickname for him). I am raising money because someday I want to say we fought this battle and we won. Please if you are able donate to our team. Robbie's Team Awesome. Just click on that shiny new blue icon at the top and you will go right to our team page.

functioning

Shelby and I are having a really hard time this week. Its hard for us to go bed at night and hard for us to wake up in the morning. The kids have been late to school 4 times since Christmas,I barely cook, and both of us yell way to easily.

Honestly some days I don't know how to live w/ this. Yesterday his physical therapist told Shelby we need to use plastic cups in the house because they will be easier for Robbie. It's really good advice but it hurts so much to think someday he won't be able to pick up a glass and drink from it.

I can't handle reading about this disease. You can only read there is no cure so many times before rage kicks in. I look at my beautiful boy and I think this can't be true. I mean how can this be true? The DNA test results kill me. they basically say theres no chance they are wrong. I mean the only chance is if there was a mix up between his blood and someone else's blood. He had a speech delay and now he has a terminal illness. Robbie has DMD and I can't do anything and there isn't any more chances for a different answer.

I want to get back to normal but normal is a joke to me now. The life I thought I had is different now. A part of me died on December 15th. I used to believe in a plan now i can't say that I do. I believe in God but I am not sure there is this plan I am not smart enough or all knowing enough to understand. This is a cruel horrible thing to do to my kid and I can't take any comfort in a plan that this is part of.

i really wanted to post about the muscle walk I am going to participate in w/ my friends and family but this all came out so looks like a 2 post day.

1:30AM

No offense to Robbie's Neurologist, I am sure he's a very nice man, but he is pretty high on my list of not favorite people. I dread going there 8 hours from now. I don't want to ever go in that room again. I hate that room. I hate that place ,I hate the look in everyones eyes ,and I hate that they weren't wrong. that they didn't call and say they made a mistake.

i hate that this is happening. I don't know any other way to explain it then that. My heart is just broken. I keep wondering how the hell I am supposed to enjoy the time I have left when I feel so broken. I want my baby to be okay. Why can't he be and how do I accept that he isn't?

Robbie was the most planned for of our children. Kelsey wasn't really planned and Madison was more a spur of the moment decision. Robbie on the other was planned and loved even before he existed. I feel so guilty now for wanting a boy. I can't tell you how many time I have thought if only he had been a girl.

I worry about my girls all the time too. Am I still showing them the love they need? How will all of this affect them? My life right now is a big bunch of worrying, crying, and pretending everything is okay.

In a few hours I will wake my boy up feed him breakfast,convince him taking steroids is important, go to a doctor again, drop him off at school and then go home and lick my wounds. I don't want to do that I want to have another day like I just had. I want to laugh w/ my kids. I want hunt down samples at Costco, and debate the merits of various dried apples. I want to watch them run around Catch Air. Hear them talk about it in the back seat. I want to be the family that is simple. the one where the kids grow stronger not weaker. The one that thinks the future is still bright.

I don't want to see Robbie suffer. The thought of that keeps me up at night. the thought that he will have to know at some point. That someday he will know he is different just about kills me.He will ask me why because thats what Robbie does. I am going to have to look him in the eye and say I don't know. I hate this disease. I hate that there is no cure. I hope everyone that reads this learns to hate it too.

I got in a silly facebook argument the other day. Pisses me off that I wasted time on that. Although in all honesty the emotion and anger really helped me get a lot of stuff out. I guess though I feel so helpless right now i just want to fight something. I don't know how to fight DMD right now. I know that this is all fresh and eventually I will have and a plan, a direction this is all going in but right now I feel like I am lost in a dark forest.

I have great friends. they are puling me through this every day. They have blessed us w/ so much. i cant begin to explain how much Shelby and I appreciate all these things we get to enjoy w/ our kids because of the things they have done. Sometimes you don't realize how much love is in your life until you need it. Thank you ladies, for the laughs, the hugs, and the awesomeness. I am so getting T-shirts made.

I lied to Robbie today. I gave him the steroids for the first time today. He asked why so i told him to make his muscles strong. It makes me so sad to think how very untrue that is.

This week has been very hard for me and I suspect it is just the tip of the iceberg. Sometimes I am just sitting on the couch watching TV and I see a man on TV and I think to myself " It is very likely I won't see Robbie become a man or at least a walking one." That is so unfair. It's no more unfair for me then anyone else w/ a sick child but it is unfair.

i am consumed w/ guilt all the time. i know there was a mutation when cell divided and i keep think I did something that caused it. I was drinking 2 days before I found out I was pregnant, I had a fever and a sinus infection and it took a whole week for me to get treatment. i took antibiotics, maybe i had too much sudafed while I was pregnant. I just want a reason why this is happening some person or thing or experience to blame.

This forces you to enjoy the little things in life. Dinnertime is more important and I worry way less about right and wrongs in life. If i want to pull my kids out of school for a few days to visit family or go on vacation I am certainly not going worry about what the school has to say about it. The truth is I don't know how much time we are going to get well I suppose that is true of everyone. I do know though that my son has a degenerative disease and that my time w/ him could be shorter and I refuse to miss something important because of some stupid threatening letters because a of a piece of legislation that seems to have helped no one. Oops soapbox sorry, it happens every now and again.

i actually lied to Robbie on Friday it just took me a few days to finish this.

The DNA test was our last chance for a different answer. It wasn't different. I really tried very hard to force myself to be upbeat the last couple of days but I can't. I cant explain why this hurts so much more but somehow it does like a final nail in the coffin. It bothers me so much that is in his Dna. I mean obviously it would be but I helped make that DNA. I carried that little boy inside of me, this happened inside of me. The guilt I feel I cant make it go away.

I feel guilty that I am okay that I got to grow to adulthood and have children and he wont. As it stands right now this disease will kill him. There isn't a thing I can do about it. It wont be a random accident but a slow agonizing wasting away. How in the world do I live with that?

I don't understand this and I know that any illness would come w/o understanding but I took him to a speech therapist for a speech delay I never imagined he was sick. i don't want to do this. How will I ever explain this to him.

I knew the DNA test was just a confirmation but I wanted it to be different, I want all this to be different. I don't know how to adjust to this, I wish there was a guidebook. Like coping w/ your child terminal illness for dummies or something.

I am going to go check on him now sleeping and peaceful and I am going to kiss him and try to remember above everything else how lucky I am that he calls me Mommy.

what can i do

Robbie hugs his bus driver on Friday afternoons. If you ask him why he says"I will miss her I wont see her for 2 days." Every morning no matter how grumpy we both our he says he loves me and hugs me. If he knows he is related to someone he hugs them. It doesn't matter if he has never seen you if you are is family you are getting a hug and probably a kiss.

He loves fruit and isn't a fan of candy. He adores ice cream and cheese cake. he tell his sister she needs to like vegetables because they are "good for you." If I cook a dinner he likes he will tell me about 20 times how much he likes it. He loves to help in the kitchen although he sometimes thinks sprinkling cinnamon into scalloped potatoes is a great plan.

He sees magic at Disney world. He has an active imagination and he is always willing to suspend beleif to fully experience something. He loves cars and trucks and loves to take things apart.

Robbie has duchennes muscular dystrophy and it isn't fair. I always thought I was one of the lucky ones.A parent that could say well no matter what else happens I have 3 healthy kids. To think my beautiful boy isn't healthy is so earth shattering.

I spend so much time trying to find the why. I don't think it would matter if I got an answer. There could be no plan I would think could justify this. So I have to move on from the why. i have been thinking a lot about what I can do right now, what is my job here and stuff like that.

1 in 3600 boys is a pretty huge number if you think about it. I had no clue this disease was so prevalent. Many people have told me since the diagnosis that they didn't even know what it was for sure. That is where I think I have found my cause. I want to raise awareness. i think awareness leads to medical developments. 1 in 3600 boys is too much, way too much.

I am angry that my kid is sick. So angry that 1 3600 boys are sick and that I barely knew about this disease. That has to change. I want to see DMD ribbons at the oscars. DMD is killing children and it has to be stopped.

Robbie didn't want to go to school today. i wanted to let him stay here so bad. That is the hardest part of this, continuing to parent when all I want to do is hold him and protect him. Keeping his life normal is my job right now so I do that but sometimes i really don't want to.

I don't know if you have read Welcome to Holland but if you google it, it will only take a few minutes to read and it is a real summary of how I am feeling, probably how anyone who's child is different is feeling.

Today I am trying really hardto focus on the good things in my life that are still here even if the future has changed the right now hasn't much. I am still angry and hurt and all those things but also acutely aware of the things in my life that are amazing.

I have alot of love and support behind me and not everyone gets that. I am still deeply in love w/ my husband. I have beautiful kids. All 3 kids have such unique and beautiful personalities. i have shelter,food,and water. I have today and really that is all anyone has.

Even though Robbie's future looks bleak and it is really easy to get caught up in that we can't. We have to remain in today fight for a cure or a treatment. I have to remind myself daily that just because they haven't found anything doesn't mean they wont. I cant get so wrapped up in the injustice of it all that I forget to enjoy my life.

DMD is not Robbie. Robbie has DMD but he is not the disease. he's a little boy whos life is going to be difficult in many ways. I can't change that even though I want too. What i can do is love him w/ every thing I have. I can teach him compassion and I can play along w/ his horrible knock knock jokes.

If you have spent anytime w/ Robbie think of a time he made you smile. Even if it was just something I said he said on facebook. Post it in the comments section. I want to celebrate his awesomeness today.

long day../

I want December 14th back so bad I can't stand it. I want my kid to be okay. This isn't right, hes a sweet little boy he doesn't deserve this. Shelby and I don't deserve this. My girls they deserve more. Our parents shouldn't have to be hurting for us and Robbie. Any family dealing w/ this it just isn't right.

I dont want to trust God because I always have and this is where it brought me. i am so mad i want to scream and yell but it feels so pointless. He fell down today just running like 5 year old boys are supposed to. He is always a mix of a pain in the ass 5 year old and a sweet little mommas boy and I don't want there to come a day he isn't here. I don't want to make major life decisions because he is going to get worst. I want what everyone else gets

I don't want to sign papers for him to be evaluated for special Ed or go to heart,lung, and brain doctors. Sometimes I wish our house would explode or something so none of us had to do this. I want hope for a cure or even just something to make this less catastrophic but how do you hope for something that they have been researching for years but have basically a bunch of not enough.

I want Robbie to have the same chances my girls have. I want family pictures that don't include wheelchairs. I don't want to know the things I know now.

They say God has a plan well i am sick of not knowing what it is. You know what God a plan isn't enough! I am faithful, I believe everything I am supposed to and this is your plan? Serial killers get to grow to adulthood but you are going to shorten my boys life? What could your damn plan be that makes that okay. What is so damn important for me to learn? I don't want to learn it! Send me to Hell, I don't care I can take I'm an adult he's a child. You are wrong this time.

I want to be hopeful to see light when I am surrounded by darkness but I can't. Isn't that the worst, God? Here i sit angry and hurt and railing at you and I still want to believe there is light. Please please take this away. I can take anything I swear. Please make it me not him. Please.
,

3am

The key to sleeping for me right now is thinking about anything but the future. I in general take a good 30 minutes to fall asleep so I do some serious thinking when I am trying to fall asleep. Sometimes I think about vacations when i was a kid, my honeymoon,whatever i can to not think about DMD. Last night I didn't do so good.

It was 3am, I needed to be up in 3 hours and I was wide awake. When we first went to bed we were talking about the stages of grief. I said " Shelby I am still in the anger stage and I don't want to move to the next one I don't like it.' He says "What is it." Me "acceptance, I don't want to get there" Shelby"What is after that?" Me " I don't know that pissed me off so I quit reading."

i am torn about whether or not i want to get there. We have all seen the stories about these super parents that took some sort of horrible news and became crusaders or made all these decisions to make their child's life amazing. I want to be that mom but I wonder where I will get the strength to be that?

So it was 3am and I wasn't asleep, sometimes when we have a few hours of normalcy, I start to forget a little and it is like being punched in the stomach when it comes back to me. I want to enjoy every single moment of happiness,savor every laugh, every stall before bed but it is so hard to try to be a normal. It seems so unfair that i have to force myself to parent and discipline and be his mom when I want to curl up w/him in my arms and never let go.

I don't want this disease to claim my child. I am so pissed that there isn't a cure. I am mad that when I see the charity things at the store i only donate a 1.00 or my spare change. I feel guilty for every prayer I ever had that was for something stupid and unimportant. Every time I prayed to be liked in high school or that my parents wouldn't find out about a bad grade. Maybe I used up all my good outcomes. Which I can almost believe until i think about Saturday night.

I don't think I can use enough words to explain the love my friends showed my family and I. The memories they made it possible for us to share w/ our son.The words they wrote and said, the joy and laughter they gave me. In a moment of such pain and anger they gave me hope. They showed me that Shelby and I are not fighting this alone. Thank you ladies you are everything good in this world.

This week i am going to try and focus on a few things. Trying to find something to be grateful every day no matter how small and a stock up grocery list. i guess baby steps back to normalcy.

Why

1 in 3600 boys. That's the short straw we drew. I cant win at a slot machine and i have never really won playing the lottery but these odds I win. how is that 1 in 3600 are boys are afflicted with this and there is no cure. How does that happen. why is it happening to my baby?

I am so angry. I don't understand how this could be Gods plan for any child. I want to beat something or someone up, I want so bad to keep my mind in the present, to enjoy every one of his smiles without wondering if I will still get them 15 years from now or will i have said goodbye to him by then. No mother should have that thought ever.

knowing that Robbie's body is slowly breaking down and being powerless to stop it is horrifying. It feels worst then other diseases because it feels like we don't even get to fight it. Theres no aggressive therapy. There is one drug in the united states that will slow the progression down. That's it one and it wont make it go away just slow it down a little. Oh and we have hope.

I didn't realize i was having a hard time until i started this. i felt a little normal for a while today taking the kids for ice cream, grabbing some groceries, even putting sponge bob toothpaste on little toothbrushes, felt like we were a normal family. Then it hits me out of nowhere and I back to this angry sad place I seem to be stuck in.

Well I guess that was today's dose of sunshine.

My son, Robbie, was diagnosed w/ Duchenne Muscular Dystrophy on December 15Th 2011 at about 11am. I relive that moment every morning, I hear the doctor say that based on his blood tests his CK levels are extraordinarily high and based on his symptoms we are dealing w/ DMD. I feel my husband squeeze my hand, i see the doctor avoiding my eyes, and I feel my self choking down my anger and emotion forcing myself to hear what has to be heard. My family was changed forever in an instant.

I decided to blog about this not really for anyone but me. I mean I hope I can eventually help someone but I need an outlet I am choosing this. I am not going to sugarcoat how I feel and I wont be politically correct. Sometimes I think or feel things I don't even like but I am careful to allow myself that. I am still very much grieving and we are in the early stages of diagnosis and confirmation so i haven't even been able to contact the MDA or anything like that.

I am not a carrier of MD as far as I know. I was actually tested when I was pregnant for Robbie which I thought put us in the clear but turns out a 1/3 of the boys born w/ this come from non carrier parents. I wish I could say I am holding on to faith w/ all that I am right now but I can't. I am so angry and really questioning the existence of a higher power something I have never felt in my life and I feel equal parts right to feel like that and guilty that I do.

Every since we found out we have been flooded w/ love and support. Both mine and my husbands parents have gone above and beyond doing whatever they can to help even while their own hearts break. My friends both old and new have just surrounded me w/ their love and knowledge, I honestly don't think could ever Thank them for that in away that would be t all meaningful enough.

i would love to have a glass half full view of things right now but it isn't happening. Hope seems like such a great concept until its all you have. People keep telling me to enjoy the time we have. I hate that I want to enjoy forever. I want to hug him when he gets married and rock his babies to sleep. I want first cars and dances, I don't know how to be happy w/ 2-7 years before he needs a wheelchair and survival beyond the early 30's is rare.

My Robbie is such an amazing kid. He is so full of love and energy. He is curious and of all my children he is the most like me. He is loyal and easily hurt, puts family first, and really has never been that into sports. He also possesses a strength and fighting spirit that gives me strength and hope. We haven't told him yet, I don't know how or when we will do that but I think Shelby and I need to be a bit stronger before then.

I hope nothing I say here ever offends anyone but I am going to try to be honest even when it isn't pretty.