There were many things we knew when we embarked on this unknown  journey. We knew it would be extremely hard. We knew we would need a tremendous amount of support. We were told seizures are likely. We were told by his specialists that keeping him healthy is very important; small illnesses could send him to the hospital and end up being “big.” We were told that, yes, his cerebellum would likely deteriorate until there was basically nothing left. All overwhelming and very scary. What we didn’t know is far more important. Last night as I was rocking him after a bloody nose I looked in his eyes and thought about…

I tried to prepare myself. I said it wouldn’t matter, but as tears stream down my face it does matter. I don’t think you can truly prepare yourself for the words “significant progression.” We knew. We knew that it was highly likely that his cerebellum would continue to shrink. For goodness sake I just wrote about it! Words stuck in my throat while on the phone with his neurologist. I tried to hold back the tears but couldn’t help it. His neurologist just listened as I apologized and she said “sometimes you can’t prepare for certain things.”  I cried. I couldn’t talk to her. I apologized again and tried to compose…

I can’t help but sit here and feel anxious for tomorrow. I can’t exactly decide how to feel. Should I feel hopeful? Should I feel sad? What way should I go? Tomorrow our son is having a repeat MRI to assess his cerebellum. His neurologist wants to see if his cerebellum is still shrinking and at what rate. Shrinking. His brain. These few words bring tears to my eyes. I could feel hopeful that it hasn’t shrunk anymore in the last year but according to the neurologist at the Mayo Clinic this is highly unlikely. We were under the impression that around age 5 the cerebellum was done shrinking, but…

  This Friday will be the one year anniversary of the scan that completely changed our lives, the MRI. One year ago we were told that our son’s cerebellum was shrinking. One year ago our son’s neurologist called me immediately after the procedure and asked “how much do you want to know?” The blood drained from my face and I wanted to throw up. No. No. No. Not our baby. I held him and sobbed. I can’t believe it’s been a year. Over the last year I have shed buckets of tears. I’ve cried for so many different reasons. I’ve cried for our son and the struggles he will have throughout his…

The holidays are over and it’s a new year. I can’t believe that a year has gone by. Happy 2015 to everyone! I have been staying home with our boys for nearly a year now and you’d think I would have more accomplished! I was laughing about this with one of our physical therapists at our recent appointment. My craft room is still a junk room, our crawl space is still the black hole for everything that is not currently being used, and yes, our elf garland has been up above our front door for an entire year. I had ideas of what my house (and I)  would look like…