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…