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.