”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…

Today was one of those days….succumbed to tears in my room. I laid in bed tonight sobbing. Body shaking, catch your breath kind of crying. I felt it coming for the most part of the day; even had a glimpse of it as I spoke to my dear friend on the phone in the afternoon. I called her to hear her say that I’m not a lunatic. Sometimes you just need some reassurance. I wanted her to tell me that I’m not crazy and that in my shoes she would do and feel the same. A few sobs escaped, just enough for me to feel a little better. I’m angry.…

Sometimes I wonder how I am functioning day after day. Remember the days of having a newborn and getting no sleep? Remember waking at every little whimper or cry and rushing to peek over the crib? Our son is nearing 19 months and we are still in the “newborn” sleep mode. Last night, sleepy boy was ready for bed so we laid him in bed and prepared his feed. Connect his extension to his button, give him his reflux med, pour formula in the feeding bag, adjust the rate and dose of his feed, and pray he goes to sleep without too many whimpers. Now I have time to do some…

I have yet to define myself. In the ABOUT section of Facebook you can choose where you work, and ever since I have stopped working outside the home I have no idea what to put here. I am still confused at the question “what do you do?” from others. I am not a stay at home mom. I am so much more. Yes, as a mother I have my routine duties. I am a chocolate milk maker, bedtime story reader, knock-knock joke teller, and laundry lady. I am the toothpaste and toilet paper purchaser as well as the “Swiffer-er.” (I wish I had time to scrub the floor on my…