We aren’t sure if our son will ever walk unassisted. We don’t know when and if he will say his first words. There is a harsh reality that comes with having a child who is affected by this rare disorder. I’ve learned not to have any expectations. I live in the moment. I have to. I live in joyous moments and not defeating thoughts. I can’t live in the depressing reality that my son may never have the ability to care for himself, drive a car, or get married and have children. I celebrate every small achievement. I smile when I hear my son say a different consonant when he’s…

As I lay in bed next to our 4 year old I feel myself wanting to hug him tighter and apologize. Some nights I look at his innocent face and tears well up in my eyes. This was not what we had planned for him. The beauty is….he has no idea of the plans I made.  He doesn’t know that I envisioned him helping his little brother ride his old trike around the block on a warm sunny day. He has no idea that I had scrapbook paper for the classic photos of shared baths in a tub full of bubbles. He doesn’t have a clue that I could hear their…

I have been told some of the most flattering, uplifting, and kind compliments over the last year. Many people have told me what a wonderful mother I am or that my son is extremely lucky to have me as his mommy. These words are very encouraging and I tuck them away for the days when I’m not feeling so awesome. Yes, I’m thankful and flattered but I’m also confused. Confused? You may be wondering why? I’m confused because I feel that I’m not being any more special or fabulous than you. I’m just being his mom. You see, when I first laid eyes on my boys I gave them my…

”So very sorry for your loss.” Are these words enough to say to someone who just lost their child? This morning as I looked at my Facebook feed I saw that another CDG child earned his angel wings. Tears welled up in my eyes and I wanted to slam the cupboard door. I looked at his photo and imagined the love his family has for him. I envisioned the kisses that were placed on his 2 year old chubby cheeks and the warm tears that fell over him. I cannot imagine the empty space he will leave behind. It’s simply not fair. We’ve had our diagnosis a year now and…

“Don’t say small gain. No matter how small, it’s a gain.” Leaving our Pediatric Rehabilitation Medicine Specialist these are the words she said to me. It’s true. Nothing is ever trivial with our son. Every ounce of progress he makes is huge. There is no such thing as a small achievement with him. We cheer, we clap, we burst with pride. I am the lunatic mom that shares a video of him chewing on a Slim Jim or a video of him attempting to prop sit for a few seconds alone. I share videos of feats that are seemingly small to the outsider. If anyone ran across my videos and…

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…