Robbie

He makes me laugh every single day. How many people really do that for us daily?  He is witty and questioning. He loves fiercely but that doesn't mean he wont tell you how he sees it. He's emotional like his mom and literal like his dad.  Thoughtful and hilarious.  Loves minecraft, legos,and Halo.

I've watched him teach his little sister to play with the xbox and I've watched him show her how to sneak whatever I just said they couldn't do. I heard him go to his big sister w/ big questions.  He loves his sisters.  He will be the first to blame if there is possibility of getting in trouble but he will be the first to jump in and defend them too.

He wants to learn "to program" like his Daddy.  Loves to sit next to his Dad and play Halo.  He likes the way Daddy makes his eggs and likes to have a little guy time w/ out mom butting in now and then.

He isn't afraid of anyone and he will hug you so you better just accept that.  His giggle is the sweetest sound and his evil laugh means a headache is coming for mom.  He is stubborn, and rules are made for pushing right to the breaking point in his mind.

He buys gifts that are thoughtful and he takes his time picking just the right thing.  He loves giving gifts as much as getting them. 

He talks to himself all the time because there is just so much going on in that head. He likes veggies more then fruit.  He watches all the princess movies with his sisters and cowboy movies with his grandpa.

He is a light in my life. The little boy in the middle. He is the first to test me and the first to hug me. He asked for a bible with all the stories for Christmas.  He comforts me when he sees me cry. He is Robbie and I get to be his Mommy.

I am scared of a world w/o Robbie in it.  I'm scared that no ones hears the cries of these kids and their parents. Scared that I am not able to do enough.  Scared of a world that teases before it loves.

I ask if you read this that you stop and think, who can I tell? I see a world that isn't educated on this condition.. I see a world where change happens because people demand it.  I want to live in a world where the marketing of a drug to save a child's life is more prevalent then one that helps in the bedroom. 

You can help me see a world like that. All we have to do is start talking.

December 15th

I can't help but feel a little pain today. As far as we've come, as many happy times we have had,  today is still the anniversary of such heartache in our family. I try to close my eyes, I pray for sleep, but just keep hearing the diagnosis, keep feeling Shelby squeezing my hand,  feeling my self sobbing in the waiting room while my mom held me, hearing my self tell my brother, breaking down as I told my aunt, telling my sister in law, answering when Kelsey said " Will he need a wheelchair?" And her whispered "i know" when I told her "Robbie doesn't know"

It's amazing that I can still feel my stomach drop and the doctor grabbing my knee. Mostly I remember Shelby and I clutch ing each others hands. I remember collapsing is his arms "sobbing not my baby" I remember my mom crying for me holding me when I could barely get the words out.  I can hear my brother's stunned silence, and how much I wanted to get up to Ohio so I could rush into my Dad's arms.

I remember the almost numbness I started feeling. We got Santa pictures that day, I don't know why because I still can't bear to look at them.  My poor mom trying to keep us together. I remember my heart aching for our 3 other parents so far away.  These things never truly leave my thoughts.

It's a bad movie over and over again in my head. I want to stop watching but stays w/ me. I guess in a way most days are good compared to that day.

Shelby and I both reacted so differently to the news. It was the first time something hit either of us so hard. I was so shattered and lost those first few months. Honestly I'm not sure how we managed to eat and get the kids to school. All the appointments we had to go to. The IEP meetings, He held everything together while I crumbled.  I was so sure he would blame me and leave me because I just felt so guilty. Later he had his times of freaking out but somehow those first few months he was just a rock for me.

I was certain the world was going to end at any second. I couldn't imagine living and breathing in a world where my baby would die because of some genetic opps.  it didn't end.  We had no choice but to carry on.

Two years later, I don't relive the diagnosis every morning. Some days even weeks I don't cry at all. Once in a while someone can tell me there's a plan, or to find a silver lining and I can remain calm. It still hurts the same.  Some days homework, xbox, laundry, dinner, bedtime happens and Duchennes  won't even cross my mind. Other days there's bullying, blisters from braces,  or falling and it nearly breaks me.

Today I know very few things for certain. I know Vicki, Bob, Belinda, and Corky will help with anything I just have to call.  I know that my marriage is strong and that I am loved.  I know that my children are each other's best friends and first defenders. I know a group of mom's 1200 miles away will tell me what I need to hear when I ask to hear it.  I know that a teenage girl stepped up and took care of my son for a week while he enjoyed camp.  I know an amazing photographer that gifted me with photos of my family that give me joy every time I look at them. I know I am proud of the money we have raised with the help of so many.

I wish December 15th, 2011 had went differently but I am so grateful for all the December 15th's that have come since and will continue to come.

Last weekend

Lately I can't get the "last weekend" Out of my mind. The last few days before I was shaking in a neurologist office. I keep waiting for to feel like I did that weekend. Watching my babies collect candy at a Christmas Parade, watching Home Alone, drinking Peppermint shakes from chick fila. Even though I was scared about what we would hear that Thursday I was still hopeful that I wasn't seeing all the symptoms.

The 2 office visits a week apart, the weekend spent fighting trying to will the CK level lower, the finality of diagnosis is all burned into my memory. Moments I would love to forget yet I never will.  Everything was different after that week.

People are often surprised to see us laughing and carrying on with life. My mom even says all the time how we keep laughing and living life. It's fake. I mean I forget sometimes in the moment but trust me DMD rarely allows me to push it to the side for long.  I fight so so hard just to wake every day even 2 years later. I could use a million words to explain the way this hurts.  Every single day it's like waking to that news over and over again. Its like being stabbed in the gut and every day the knife is a little more dull. It's not shocking anymore it just is. I don't know if that's better..

I want to find a way back to a God I can't help but feel let my child down.  I struggle every day to lead my children to God but it's so hard for me to believe.  How can something so powerful just sit back and watch?  I just can't see past that. Maybe my faith was never all that strong but i sure miss what little I had now.

Sometimes I wonder when or if I will ever feel like Nicole again.  I once told someone I was happy at least once a day. Truth is I still feel happy at least once a day but it's hollow. It's being happy in spite of circumstances instead of just happy.

I can take my kids to a parade, I can watch Home Alone, I can drive an hour to Perrysburg to get that shake but it will never feel like that last weekend.

I just want to add to this because I think we all forget. In spite of DMD and everything else this last 2 years has brought to my life I still try to remember how lucky I am.  Bad things happen to people every day. Life can just up and change w/o any warning. We have to find a way to stop judging so much,to see past our own hurdles, to let go of anger, to forgive.  All I know for sure is that this life comes w/ no guarantees and what looks greener is often just good fertilizer but the same grass.

Everything is Coming Up Lemons

When I was a kid I was sure high school would be like "Saved by the Bell" or "90210". It wasn't. I got my heart broken, I may have broken a couple (humor me I might have.), I got Mono, miserably failed typing, and found out I had absolutely zero ability to speak a foreign language. I survived I took my lemons and in the end I was proud of the lemonade I made.

When I was 15 I was sure I had found happily ever after. 15 year olds can be really stupid. I dusted myself off, it's a blessing at 15 to realize you don't have to settle, that the first frog isn't always the Prince. Lemonade.

I thought college and a journalism career was my path until my path changed. Turns out falling in love doesn't have a timetable. Honestly not the worst lemonade. I have an amazing husband, a good, simple, happy life. Lemonade.

At 25 I found out our 2nd baby was a boy. Finally a boy for the name I had picked out way back before I knew where babies came from. 

I thought he was perfect. Yeah, I realized it was taking him a while to walk but his sister was late too. Yeah, he isn't talking perfectly but Kelsey talked so much I shouldn't compare.  He falls a lot? So do I nothing to see here. 

I thought it was so great to be young parents, to be able to have a 2nd newlywed period when they all moved out.  The Grandma I planned to be, the holidays w/ son in laws,  and a daughter in laws,  the lectures I would give, the trips we would take just the 2 of us, the RV, the simple life it's what I had or I guess really wanted. Then Lemons came and this time I can't find a way to lemonade.

The truth is I can't find the light anymore. It's like I am drowning and I can't see the surface. It hurts so damn bad just to be alive. I force it down, I mean Muscular Dystrophy certainly doesn't give us a few years to get it together. I mean the simple life?  Ha, more like hurry don't forget this appointment, crap how do we pay for that?, IEP at 8am before school? Sure we will just call Mary effing Poppins to watch the kids,  Oh shit I forgot to enjoy that moment, Did you give him steroids?  You need the day for vacation so we can go to this doctor, No. I will do my surgery next year when we have more in Fsa, and my favorite " I know it's uncomfortable baby but you will get used to it."

I am so alone everywhere I go it seems. I am so angry. I keep thinking okay this is it , we found rock bottom then it falls out again. I can't get anything organized not my laundry, not my health, and certainly not any lemonade.

I'll be honest Robbie's journey to a diagnosis happened between November 8th and December 15th essentially robbing me of my favorite time of year. I force myself thru these months for the kids but if I could stay on the meds from my shoulder injury for the whole time and sleep through it well one can wish, right?

I guess sometimes there just can't be lemonade. Some pain can't just be pushed through, sometimes there isn't a lesson, no silver lining happily ever after. Where is my strength my fight? I thought you got that when you got bad news. A consolation prize.

The real secret is I want to take my family and run. Pretend this isn't happening. I wonder if that urge ever goes away. I keep putting my emotions and my feelings in somebody else's box.  Oh she is way strong then me why can't I handle this like her.  I keep eating because exercising to be healthy seems comical when a diagnosis can just swoop and take every thing away.

There is no lemonade because there are too many lemons. I feel godless and alone for the 1st time ever.  Where there used to be a path there's only hurdles and they seem daunting and unending.  I don't want lemonade. I want to be a woman that turns to faith, a mom that is fearless and strong, and the person everyone leans on. I feel like the old guy in "Up" well before he met the boy.

Whatever

I am so tired. Just the constant barrage of crap.  I want a break, just a few minutes to not feel bad.  I don't want any of this and I am so tired of feeling so out of control.

Nothing makes sense anymore. I cant remember what it felt like to feel things would be okay. It feels nothing goes in our favor anymore.

I hate steroids. The way they are affecting Robbie's behavior and that i keep giving them to him. Is it even even working?  Stupid athletes taking things like this by choice. Assholes.  Just so you can make a couple more million, wasting years of their lives when Robbie has to take them just 2 stay upright a few more years? I have no respect whatsoever for people that do this.

I hate how much our lives revolve around this disease, illness, condition.  We cant even think about buying a car, house,  well anything w/o wondering if it will be adaptable when that time comes.

I just want my damn normal life back.  I want to feel again.  I am numb. I have no choice I feel like it is numb or depressed that's all I have. My faith is nonexistent. I try to find it but I don't even see the point anymore.  Why is this happening to anyone? Where is God? He is a little boy, how is this even remotely okay.

We have to pay a 160.00 ticket we got on our anniversary for a stupid traffic violation Shelby didn't commit. Seriously world there isn't enough crap we are dealing with? I know that's nothing compared to everything else but it's like we had 1 night to have fun and we get a damn ticket.

How can we live in a world where this just happens? Why are people winning millions of dollars in lotteries yet we struggle to fund research for these diseases? Why do I have a stupid genetic eye disease the prevents me from even getting a few hours out of the house?  Why was I blessed w/ this amazing little boy if he was just going to be taken away from me slowly while I sit by powerless?

I yearn for other diseases. How sad is it that? I don't want Duchenne. I'm not a carrier. It just happened. A cell divided wrong and then boom... misery. 

Yesterday while I took a shower Robbie started having a monster temper tantrum. My girls were freaking out. I had to tell them to lock themselves in their room. Part of me died.  I know he was out of control but he was just yelling and I was able to calm him but I think it was the first time I actually really saw a steroid side effect.  I had to tell my girls to protect themselves from their brother. I hate myself for that. I know I did the right thing but it hurts so so bad.

Shelby and I have been fighting about really stupid stuff. It happen and we will get through it. Sometimes we only have each other to lash out at. We try so hard to hide the anger and sadness from each other. Each of us trying so hard to be strong. That can only last so long and then we blow up.  After the big blow up we can usually sit down and talk it out or cry.  We get so far inside ourselves that we forget we can share our load.

It feels like life is moving so fast. All I want is for it to slow down give me some time to enjoy life before that thing we can't ever talk about. We can never think about after.  We call it the "end stage".  I don't want his life, our family to always be in the end stage but it feels so close and I can't even let myself hope we find a cure before then because then it will hurt more after.

I had to get that out or all these feeling would cripple me for days. If you made through all that well I'm sorry I know it wasn't very pleasant.

Strong enough

Most the stuff I type here is hard for me to read.  I really wanted to have an honest place to just put my thoughts to words.  Actually there was a part me that felt and stills feels someone needed to say this sucks.

I am all for hope and fighting, prayer and spiritual strength, but I don't think that can be the whole story. As parents in this community I think we have a responsibility to tell other moms " You don't have to be strong.  That being sad, stressed, scared, and angry doesn't make you weak just human.

I know we all want to be the amazing mom w/ the charity. The mom yelling the loudest, leading the charge, but its just simply not in everyone.  I have spent a lot of time feeling like I wasn't good enough. Every time I read "I had to make a decision or wallow or fight" or something like that I felt a punch in the gut. I would get angry. Start feeling like I was letting Robbie down.

My strength isn't organization.  I literally dread making phone calls even to order pizza. The deli counter can cause me to have a nervous breakdown, and don't even get me started on special orders at a restaurant. I can't change this part of me because Robbie has Dmd. 

It has taken me a long time accept that my fighting will be done in this house or surrounded by others.  Robbie needs mommy. He doesn't care that I don't run a charity. He cares that I love him through all the challenges and mountain climbs we will face.

Robbie needs me to be his advocate not muscular dystrophies advocate. I fully support the mothers that are leading the fight. They are my heroes but that doesn't. Mean the moms quietly charging forward in the face of the unthinkable aren't heroes too.

I guess I want us all to have a voice.  I want any other mom still grappling w/ some of the worst news imaginable that, it's okay. You don't have to be super mom.

Getting this kind of news, watching your child struggle, and facing an uncertain future is HARD.  There are days you will want to hide in bed and pretend this isn't happening. Do it. Give your self time to feel sorry for yourself.  This isn't supposed to happen to our babies. It's fine to be angry.  I yell at God daily. I figure if he cant handle me being mad at him how powerful can he be?  It's okay to fight to charge on. We are all facing the same mountain but  we will all climb it differently.

Every day I wake up, tell my kids I love them, and have as much normal time as possible.  Today Robbie asked if I always knew he had muscular dystrophy and if it was hard when we found out. I told him we didn't know until he was 5 and it was the hardest thing I ever had to hear.  Then he asked if it hurt when they cut him out of my belly. Boys!

I just want us all to be the best mom we can be. Facing this mountain is courageous.  Loving them is all out kids need.  If you are doing that you are doing your best.

Insomnia...the Blog.

I have spent a considerable amount of time in the past this last week. Untangling the knots in my family tree. Obsessed in a way. Part of it is that I have always been a history geek.  Give be a 1000 page Marilyn Monroe (We share a birthday.) biography and I won't come up for air until it's finished. I suspect the obsession this week was simply that what happened 100 years was easier then the present.

Be fore warned this is not a pretty finding inspiration and fighting on post. I am grateful yet angry and sad at the same time. More equipment entered our life this week.  It's almost like the week of diagnosis again.  Leg braces. I don't have the technical words down yet so bear with me. 

I am so grateful to have this equipment to make Robbie's life easier. I am pissed we need to make his life easier. I am sad that in my head I worry it's happening to soon. That we are moving closer to the dreaded "end stage".   I want to scream and rail at something, someone, God, the Physical therapist, the neurologist. I can't because this time my feelings have to go 2nd.

When we got the diagnosis we kept it from Robbie at first. We took time to really get our selves together before we started talking to him.  He is fully aware of muscular dystrophy now. Honestly he isn't above using a "I have a muscular dystrophy question" stall before bed. He is nervous and apprehensive about the braces. So I have to fake it for him.  I have to find a bright side, act like the blue camo and green came look good, I have to be okay so he can be okay.

Not that I am doing a bang up job of the whole thing. When we took them off tonight, he had the left the family room, I got up to put them away. Kelsey and I were watching some reality thing and she looked me right in the eye. She saw my brief moment of reflection as I looked at them in my hands. She just gave me a sad smile patted me on the hand and went back to watching T.V.

She doesn't know that was probably the most comforting thing she could do right then. I feel like on top of keeping it together for Robbie, I have spent a lot of time comforting other people. Sometime I want to scream. "I'm not a damn expert, just his mom!"  I get it, lots of people love him. We all want him to be the kid that's I don't know the best at Duchenne's?  At the same time I feel like sometimes I need to say I know you love him but I need time.

Honestly why did I just think of that?  I get angry occasionally and it's not justifiable at all. I can't ask everyone to just know what I need from them.  I think I really just need to be honest and selfish at times. There are days that being strong for him takes everything I have. I forget that I can say, no, I need time.  These people that love him love me, I'm sure they would understand. 

Okay this is starting to feel like a slow motion train wreck. So hopefully I got enough off my chest that I can get some sleep. 

Feeling vomit...

I struggle to put my feelings into words, at first I used to come here and just open up about all the things I was feeling but eventually it started to feel like a weight. Mostly because I had the predetermined plan for dealing with all this and when I didn't get to where I wanted to be I would feel guilty.

Sometimes words that should comfort me hurt. Sometimes jealousy makes it hard to function. Everyone around me got healthy sons. All my friends kids are playing soccer, baseball, football, and my kid is struggling to walk up stairs.  My brother, dad, husband, my father in law, and my brothers in law aren't suffering from dmd. My Grandfathers, Shelby's  Grandfathers, our uncles, cousins, are free from this. I don't wish it on any of these people but I can't help be jealous of their mothers which I know includes my mom.

I know every person has their mountains to climb. I know that as horrible as DMD is, there are worst things.  At least my brain knows this. My heart it's broken and frankly it wasn't that logical to begin with.

Some things should inspire me but a lot of times inspiration makes me feel lacking.  I want to be full of grace and strength when instead I am fat and tired. I wonder if my kids remember when mom was a decent mom, I wonder if they will have her again.

We just finished serial casting, it was successful but another part of my soul went with it. Seeing Robbie crying and screaming at night because it was painful or irritating and having to say " I know baby, but it will help your legs. Just a few more days." Was like punching myself in the gut. Next he gets fitted for ABO's, I didn't think this happened at 6 but that's because I just simply wanted it not to happen at 6.

A visual thing for the rest of the world to see.  This to be real for everyone he sees. Will people be mean to him?  Of course someone will, kids are mean. I know kids are mean to him already. It's not fair he's just a little boy.

Not every day is a drama filled shit fest. I don't want to leave that impression.  Most days I can push it all down and pretend. I don't know if that's healthy but sometimes you just have to keep going however you can.

I have gained an obscene amount of weight in the last year and half. It's simple I feel bad, food tastes good, I eat too much.  I sleep too much or not enough.  Some night I go to his room and I just watch him. I try to freeze that moment in my mind. When he is just a boy having dreams. I remember when he was just a boy.  When people didn't see him and compare him and his abilities to their own children/grandchildren.  When going to the playground wasn't torture for me.

I need to keep going to make it over this hurdle and the next.  I do, sometimes kicking and screaming, throwing a Madison fit but eventually I stand up so I can be knocked down again. Over and over its up and down, anger, then acceptance, regret, then a little happiness.

It's become normal.  The shock is mostly gone now. I wonder will I always feel like this?  Will there always be a black cynical cloud in the deep recesses of my soul?  Will I ever feel relaxed again?  Will stop I eating?

The he comes into my room at nearly midnight to show me the alien he drew on his belly with a pen.  It's his baby and he's pregnant he says.  I'm laughing at his silliness. He hugs me and goes off to bed. No matter what I say, no matter how much this hurts,  I am better because I get to be loved by him.  Maybe in the end I was the mom that could love him through this. No, I am not perfect or super strong, organized, or skinny, but I'm mom and mom is all he asks for.

Angry

I can't even begin to sugarcoat this.  I have never in my life felt so angry. Not even on the day of the diagnosis did I feel this much venom.

Kids are doing horrible things to my little boy. Traps they call them. Basically tying him w/ jump ropes or forcing him into the middle of a hula hoop they pull around forcing him to run until he falls. Its so evil and mean I can't wrap my end around it.

He tells me he tries to get away but they get him again because they r faster. This is at school in the playground where I am legally obligated to send him.  He is supposed to safe. How is this happening? Why isn't anyone seeing. Does anyone there care.

I don't even know where I go from here. I emailed the teacher. We are going to call the principle. I am terrified they wont listen. I know he telling the truth. He finally saw an opportunity to open up to us and he did but I am so mad at myself because I should have done this sooner. I should have known I am his Mommy!

Twice he has come home w/ band aides on his thumb and a weird vague story. Both times I let it go thinking he falls Nicole it's nothing new.  I never imagined kids good be this cruel at this age.

They never do it at 2nd recess because he books it over to where his sister can meet him and she's seen 3 kids following him. They run away when they see her and her friends. Chicken shits.

I wonder who raises a child to think its okay to pick on the kid that's slower then you?  I mean this is torture for him. What kind of human can do that to another?

I should be asleep but every time I close my eyes I see these things happen to him.  I don't want him to go to school in a few hours. How am I supposed to do that?

He asked us if it's a good thing to have muscular dystrophy. I think we should have said it's better then being a bully. How is this happening?  Pushing him off swings, headlocks, what the hell is wrong w/ this world?

what needs to be said

This is my space. This is the place i go when the stuff in my head has to come out.  There is no expectation here, no limits to what I will say.  when my life changed from ordinary to  terrifying I turned to the one thing that had always been my outlet.  i write.  It's not about my words being pretty or correct or even helpful for anyone outside of myself.  Don't get me wrong I would love it if my words touched someone but this blog was meant to be my place to let everything in my head out.

I haven't been blogging.  sometimes I think seriously no one needs to read one more page about my anger.  I do though.  My anger is real its almost a part of me and so many times when I am trying to find support on this crazy journey I doubt myself because everything I read is about being strong, fighting, soldiering through,and raising awareness, that's great but its not a complete picture. 

I have all those things inside me of me all the same desires to change the world for my son, to make wallets open, and get us the scientific breakthroughs we all desperately need.  I am sad and really angry.  Robbie is not a statistic, Robbie and his sisters are my life. My heart is broken.  My life was shaken and changed in an instant not when the doctor confirmed my  worst fears but the day i read the symptoms the day i realized it wasn't happening to other people.

I can't move past being angry because i'm still angry I don't think I will ever not be angry.  I mean a little accident when a cell divides and your child gets a death sentence.   

My sweet troublemaker that never hesitates to say he loves me and tell me i'm mean in the same breath.  this smart and wise little person has to struggle because of what?  A cell?   i won't apologize for being mad or sad or anything else.  i will not make Robbie apologize for anything he feels because we don't have the time to bull shit around and make it pretty for anyone else.

i have talked a lot on here about struggling with my faith.  truth is I don't struggle I know God is real, I know heaven is real. I believe  that beleif doesn't mean acceptance of this challenge   it doesn't mean I say Yes sir and line up.  No it means I be honest with what is in my heart.  It means i rail at god and cry and beg him for strength.  it means i stand up and fight against my son being a statistic.

i am faithful, i always have been not because it gets me something or makes me a better person.  My faith gives me hope when i can't find it anywhere else.  My faith leads me to a more liberal view of the world.  my faith give me the strength to question what feels wrong in my heart.  

I love my child, all of my children, their lives are important and it's not okay for them to be shortened or difficult because they drew the short straw.  I want them to see that their mother she stood up and said what was in her heart even if it wasn't okay with anyone around her.  I am proud that my kids jump into charity, that they have empathy, because I show them its okay to feel mad or sad or happy or crazy.

My story, my journey is unique and not at the same time. Mine is not the first child to bear this load.  It is time for this disease and the prognosis to change.  it is time for everyone to know what duchenne muscular dystrophy means.  No cure doesn't mean he is saddled with this his whole life no cure means he will die from this disease.  DMD was here before HIV and affects innocent children.  Death cannot be the only way  out any longer. So yeah I'm pissed, i got a reason to be.

Mom

Thank you. June 1st is the best birthday ever so thanks for doing that whole labor thing on June 1st.
Thank you for answering the phone when I called in October right before Robbie's IEP, for offering to come over and staying on the phone with me until I quit crying. 
Thank you for spending $400.00 on a plane ticket so you were there on the worst day of my life.
Thank you for making the best chocolate cake ever.
Thank you for taking a vacation Day in the summer when I was 12 and spending the day at the water park w/ Brad and I.
Thank you for the amazing Christmas we had every year.
Thank you for taking us to pizza Hut after getting through all those bookit books.
Thank you for telling me to wear flip flops in the shower while camping.
Thank you for being honest with me in the years my body was changing, for answering every question I ever had including "Whats a B.J.?"
Thank you for staying up and listening to me cry when I got my heart broke but letting me get through it on my own.
Thank you for sending me to California that summer I was broken.
Thank you for all those trips to the dr when my throat was hurting.
Thank you for making me compare everyone blood drawing abilities to yours.
Thank you for loving Shelby
Thank you for teaching me to laugh. 
Thank you for taking me to see Billy Ray and those free concerts in Wyandotte
Thank you for teaching me to protect myself when I started making adult decisions.
Thank you for letting me feel, say, and deal with this anyway I need to. For defending my right to feel what ever I need to feel.
Just Thanks for being my Mom. 

Good...

It's way to easy to get caught up in the hard stuff, to convince ourselves nothing good happens.  We see horrible things happening on the news, we stress about making ends meet,  and in my case my son's illness dominates the negative recesses of my soul. I remembered something tonight.  A beautiful memory that reminded me of the beauty in life.  It made me think that maybe its time to let those memories stand in my mind to remember beauty and what is truly important.

My poor husband some days, I must drive the man half crazy.  I am not a small thinker.  I think big, he's much more detail oriented. This whole memory thing started because I started going crazy trying to plan a vacation that would be some huge memory for my kids.  Eventually he talked me down from Disney World or Yellowstone. No Jackson Hole or Grand Canyon.   It was quite easy really we started talking camping and I remembered Ostego State Park.

Ostego State Park is probably my first vacation as a child I really remember.  Sure I was 6 and romanticized the whole thing so while my mom remembers how dirty the dirt was (?) I remember the flip flop of my shoes, eating frosted flakes it styrofoam bowls w/ my dad and the really cool camp sites right by the water.  I remember walking in the woods and store across the railroad tracks.  I remembered what truly is important in life...The time we take just to be together.

It was so good just to remember the smell of a northern Michigan morning. Suddenly I felt myself thaw a little.  Memories they just came rushing back.  The perfect Christmas at my Grandma's house.  Our family changed forever after that but I will always have that picture in my head. Grandma cooking a turkey and ham. My uncle Brian smiling sitting in the porch (it was actually a room we called the porch). Dani taking food orders, Grandma's Christmas village, Mom and Dad in their jammies on Christmas eve.

The perfect kiss in the snow, my 2nd speech in speech class Jr year. I was so terrified but half way through I realized I kinda liked it.  Watching Exorcist w/ my friends Tori and April in 8th grade and then doing makeovers and listening to music. In case your wondering April always had the most awesome music collection. Cruising Wyandotte w/ Pam and Laura.

Riding the Iron Dragon w/ my dad, My mom taking me to see Billy Ray Cyrus during the achy breaky heart craze. Roller blading w/ Brad, The first time I got walked in softball (that was the high point of the season for me).   Running the 200.  My first crush and the 20 that came after that. Renting the pontoon at Cumberland Lake and how good the grilled chicken tasted we grilled that day.  The fans yelling Lou at my first Tigers game.  Uncle Mike introducing me to the Jr Bacon Cheeseburger.

My point in all this is that maybe I didn't have a perfect childhood but the crap doesn't stand out. Sure I can remember broken friendships and all that but its nothing compared to Trick or Treating w/ my dad or going up North for the annual Mothers Day trips. 

I cant fix Robbie's disease.  I can't make his awareness of his differences stop.  I can't guarantee the future being bright for all of us.  I can't make every day a trip to Disney World.

I can hopefully make our highlight reels amazing.  I pray they will remember the smalls things. Pool playdates at Miss Tara's pool, smoothies and popcorn for dinner on movie nights, Their first ride on a roller coaster,  the times they ran around playing "zombie cowboys", the mac and cheese birthdays, just the presence of their grandparents in their childhood.  I hope they remember the giant pieces of Toarmino's pizza we ordered just to show them the slices are really 12inches long.

I don't know  what exactly the future holds for us.  It may be a hard way to grow up. I just want them to look back and have a beautiful simple memory to go along w/ every Disney World/Grand Canyon.

To the runners, the spectators, the families affected and changed forever, the city of Boston my thoughts and prayers are with you and yours tonight.

First

Everything in disarray. That is how I would describe the last what year and a half I guess. So many lessons I have learned.  Something like a sick child really forces a person to see truths in their lives.

I think the biggest thing I work on everyday is a my marriage.  Besides financial issues we largely brought on ourselves up until December 15th 2011 our life was rather easy.   I don't think our marriage has or will ever experience the strain this illness has brought to it.

We are 2 different people and in most instances that works.  We enjoy the way we can give our children such a varied view of life and
Ideas.  Grief,anger, and sadness is a whole different beast.  It's different for me. I have a lot of guilt that I don't think anyone else around me gets. I mean I know I did nothing wrong that it's just extremely bad  coindence or luck but I can't help but feel responsible. Shelby doesn't have that particular guilt.

I know it kills him to see me when guilt takes over. He can't make it better. Men like my husband make it better when he can't he feels more helpless.  I am not saying the man is made of stone just my guilt and his guilt are different and sometimes it feels like we are each on separate but wholly visible deserted islands

I think for a long time trying to not add to my burden Shelby internalized and sucked down his own feelings in order to be strong for me. For all you men out there seriously we girls can handle more then you think.  It was a move that a lot of times made me feel very alone and like I was somehow like doing something wrong. Then one day it came out in a spectacularly unShelby move.

In a way I think his momentary I can't take this anymore,rip off the band aide, and make a huge change was the best thing he has ever done for us. I needed to know I wasn't the only one that was a crumbly mess. 

I think the last 2 weeks have put us onto a road of healing we desperately needed.  Being honest I was really sucking at the mommy/wife role. He was enabling me and I was letting him take over, basically being a passenger. I was also creating an environment where he was seeing me fragile every second of every day and he couldn't or wouldn't add to my burden.

Marriage is always work. If it's not you probably aren't doing it right.  It's important work, sometimes easy work but still work.  We love each other in the forever, toe curling, fireworks way there's no doubt I will always be his and he mine. That being said when you promise sickness and health you think of each other but when it's a child, the product of your bond I can't explain what that does to a person.

Our relationship  has to be good.  We have to put it first so that we are a united strong front.  Sometimes that means sitting down and saying "Look we are f***ing this up." I am so glad to report we are finally at that point. That in the mini crisis we are currently in we have found a way back to the basics.

What if? And What is.

Every once in a while I will see a mom and her kids.  Usually it's a boy older then Robbie and he's running or lugging groceries for Mom, or even carrying a younger sibling.  I stop and I realize that I will likely never have that w/ my son. I know I shouldn't wish for another's problems yet I can't help but wish that was my life. My boy that gets to grower stronger instead of weaker.

What if he was just 6?  What if there wasn't a mutation in his genes? What if I didn't have to worry about his gym class being too much for him? What if I could watch him race his sisters and win? What if he could walk flat footed, climb stairs, and run?  How I wish he could run. Robbie would love running.

Of course I know what a dangerous path those thoughts lead me down.  I know to be grateful for what I do have that somewhere someone is wishing for my life.  I cant help but envy those that will never walk this path.

I miss peace. At least I think I do. Life has been hell for us. I see Robbie's disease progressing and I mean it's too soon. It scares me. I just am not sure that I am strong enough to lose my baby. I mean every single damn day I pray for a cure, a treatment,anything.  Every night I go to sleep knowing today wasn't that day.  I just fear the day it's too late. The day I pretend wont come but I know will come if something doesn't change. I fear goodbye.

I am not doing great. Shelby is not doing great. We are living our own personal hell. It never stops. Life just won't give us an inch. Not a moment of peace. We couldn't even have a nice normal Disney trip.  I feel like everything we touch gets broken.

I love my kids so much.  I need to find my inner strength. I need to fight through this cloud hanging over us. I need to find a way to embrace what is. I need to be able to love today even w/ tomorrow hanging over me. I just wish I knew how.

14

Last year I wrote 14 blessing or things I love this year I am going to write out my 14 wishes.
1. A CURE FOR DUCHENNE MUSCULAR DYSTROPHY
2. I want to speak out more. Be louder. Be better. Make a real difference
3. Spend a whole week at the beach w/ my family and not worry about anything but sunscreen.
4. Get a chick fil-a in Livonia
5. Spend more. Time w/ my niece and nephew
6. Get my eyes fixed
7. I want my kid to grow up proud of who they are.  My son to treat ladies correctly. My girls to respect themselves and expect nothing less from their partners
8.I wish things were different
9. I wish medical insurance made sense. That getting what my son needs wasn't a fight
10. I wish to be more forgiving and less angry
11. I could talk to my Grandma.  We were so close the last couple of years and I just miss her directness I guess.
12. I wish i could be a bond girl.
13. Chocolate could be calorie free
14. I wish I could take the pain everyone I love feels amd make it better.

Winter blues

The world around me keeps going. It seems everyone is moving on and living but I am still here. Still sad, angry, still in hell. There moments of sunshine, days it doesn't feel like hope is gone but darkness always comes back. 

I hurt everyday and then constantly feel guilty like I am not allowed to admit it anymore. Sometimes it feels like everyone around me doesn't want to hear it anymore. I can't help that for me it is every hour of every day.  I am filled w/ hope begging God to let Robbie be saved to let this be the generation of breakthroughs.  I am filled with a sense of loss, a feeling of distrust.  Everything I thought about life, faith, hope...was it all wrong?

I am told to focus on the positive which is usually said as a way to make me feel better but is honestly laughable. You mean the fact that my kid is still alive for the time being. Right, yeah its not good enough.  I know there are no guarantees in life but damn't this is worst then that.  It doesn't matter how much i think positively it won't change this. There is no cure. That is the life I lead.  There is no silver lining there.

I just want what I thought i had. I don't understand why us? Why Robbie?  Why anyone?  Why does this happen to so many families and we all just let it happen?  Years and years, generation after generation, and no answers. 

I love when doctors ask what led us to testing.  For some reason saying nothing I thought it was a speech delay always makes them flustered.  Its  horrible but it's like sometimes I have to make sure they know I'm destroyed, that this makes no sense, that I am beyond angry.

Pain like this is so indescribable and the worst is eventually I have to put it away.  Not for me but for everyone around me.  It's annoying but understandable. I get that seeing me sad is hard for the people around me.  I even get the desire to make it better. I know it comes from a place of love.  I end up pushing aside all the bad stuff because I can't stand seeing everyone else's pain and I want to make them feel better. It's like a circle.

This is my child. He's real.  He loves my cooking.  He loves Curious George.  He clings to me when he  is scared.  He likes to read to me.  I am supposed to make it better.  I am supposed to have the answers.  It is me that is walking around w/ a broken heart day in and day out. Oh my God it never stops hurting.

Then life has to keep moving. So the motions of life they are still there. There's still homework, and report cards, dishes, laundry, cooking,sweeping,planning fundraisers,  and all the while I have to smile. I have to go on vacation and not be jealous of the millions of moms walking around w/ their healthy sons.  I need to not tell off the lady bitching about my use of a stroller for my child who she feels is too tall.  And the worst thing? I am supposed to walk around freaking grateful he's not gone yet.

I know that was a horrible thing to say but I refuse to sugarcoat at least here.  I am up not asleep because tomorrow night I have to put my son in leg braces when he goes to bed. I have to because of some mutation in exon 45 that I can neither change or make better at this point.   I will smile and hold him.  Explain muscular dystrophy again being as truthful as possible.  For a brief moment I will savor him in my arms.  I will be thankful then.  Not because "I will be cherishing the time I have left with him" but because loving him is enough.  Even when it hurts me being the one to hold him when he is scared is enough to make me keep going.

Bullet Hole

It's like walking around w/ a bullet hole.  I can put a bandage over it so no one sees.  I can pretend it doesn't exist but at the end of the day it is still there.

Every single day I am confronted w/ the realities of muscular dystrophy.  The fear of the steroids changing him, the calve muscles that keep getting a little bigger, the bills,  the logging on to facebook and reading of another boys passing.

I feel stuck in a way.  Some days I can go a whole day with only normal stuff on my mind. Those days I start to think I have reached some level of acceptance but its just a front just me doing the things I have to do and ignoring the bullet hole. I am not sure I will ever find acceptance,  I mean why would I? 

It's a strange feeling half normal/ half grieving.  I used to be a silver lining shipper but honestly I don't really believe there is always a silver lining. Sometime something bad happens and it's just bad. I mean am I lucky I get to be Robbie's mom? Of course but that isn't a silver lining. It just is. There isn't a dmd silver lining not yet at least.  I am sick of being told I should grateful for what I have because damn't I am.
I know I am blessed to be a mom, to have the love of a good man, to have family and friends to count on but that doesn't mean I have to only feel those blessings.  Those blessing do not outweigh the sickness of my child or make me less sad.  I know people in this world are dealing w/ worst situations and I know people are dealing w/ better situations but that doesn't make mine any less tragic just different.
I parent different then I did before maybe I am a little more lenient  and maybe that is because well I don't know how long I have w/ my son. I mean he has rules and boundaries like my girls do. We as a family are softer. We savor moments, we laugh, cuddle in bed and watch movies or T.V.  I try to not yell much because I refuse to look back and remember all the times I was a hard ass.  I spoil my kids a little.  They are loved and hugged every single day of their life and their father and I are conscious  of the fact that these kids have heavy loads to bear then we did.
I love my little family. I want my son to walk into middle school, to rebel and drive me crazy as a teen,  to drive a car, to decide on a college or not a college to dream of a future where he can get married, have kids, a boss to hate, and an awesome mom to be grateful for :-).  I do not know if he will have that and its a bitter pill to swallow.