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.