The Special Mom

To moms and dads whose child just received a life threatening diagnosis, I know you’re scared. I’ll never forget the words from our neurologist when she told us that our child had congenital disorder of glycosylation (PMM2-CDG). She told us that this was not a sprint and we were beginning the longest marathon of our lives. And that’s exactly what I wanted to do. Run. I wanted to scoop up our baby boy and run. I had an overwhelming desire to protect him paired with immense fear. I had no idea where I wanted to run, but I wanted to get as far away from her words as possible. I wasn’t…

We are home and adjusting to being back to our normal crazy life! I wanted to share a link to a video we made while at NAPA for his intensive therapy. We are incredibly proud of all that he accomplished and look forward to scheduling another intensive session. Take a look here! NAPA Intensive 2  

As I watch my son work harder than he’s ever worked before I catch the eye of the child’s mom on the next mat over. She gives me a kind smile and as our eyes meet we both instantly share thoughts without saying a word. My son isn’t shy about letting his therapists know that what they are doing is hard, uncomfortable, and something he’s never done before. The mom and I occasionally glance at each other and give one another imaginary fist pumps. We are here. We are pushing our kids to achieve their full potential. Surely that’s worth a fist pump or two. The 3 week long intensive…

A letter to my son on his third birthday, If there was a picture next to the word joy in the dictionary your smiling face would be next to it. There is nothing better than seeing you grin from ear to ear. Your giggle is even better, there’s a piece of unearthly magic in it. I have to say that the only thing better than seeing your smile is the feeling of knowing I put it there. If there was a picture next to the word strength in the dictionary, again it would be your face. I am in awe of how hard you work day after day for things that…

Our 5 year old has no idea his little brother has a rare genetic condition. He is completely unaware of the term “special needs.” He doesn’t realize that his younger brother is not “typical.” He likely thinks that a stander in the middle of the living room is normal. He may think a high chair is only used for messy play. He probably thinks that gait trainers are how children learn to walk. He understands feeding tubes are for providing nutrition to his little brother and never questions why he doesn’t eat orally. The other day as we were packing up to see one of our many specialists I heard…

I’ve been told that I need to get out more often or that I need to do things for myself. Alone. Friends tell me to “let go” a little. They tell me not to worry and that my little guy will be fine without me for a night. I realize all of this but to tell you the truth, this is extremely hard for me. I was at a birthday party and a party go-er observed me caring for our son over the course of the party. We didn’t do anything special. I played with him on the floor, I snuggled him, I fed him…all the usual things I always do.…

An old friend of mine would occasionally call her child with medical complexities “broken.” I would smile and go along with her but it always bothered me and I couldn’t pinpoint why. I do understand the need to have humor in our lives. I understand that people all cope differently under stress and unusual circumstances. Believe me, our lives need laughter. But I kept thinking of what she said and thought that if she thinks her son is broken she most definitely thinks mine is too. Our son has a rare genetic condition, congenital disorder of glycosylation (PMM2-CDG). From his head to his toes, he’s affected by his disorder. The…

I met a woman today and after explaining what Christopher has and how congenital disorder of glycosylation (PMM2 CDG) affects his body she looked at me and said… “well you sure are in high spirits.” I was confused. I didn’t know exactly how to respond. I said something to the tune of I can’t change it and this is our life. But after thinking about it I wish I would have told her to look at him. Really look at him. Look past his head hanging a little lower than a typical 3 year old. Look past his medical stroller with his formula bag hanging on the handle. Look past…

We’ve all seen or heard the quote “the best things in life aren’t things.” The other day as Christopher sat in therapy for over 2 minutes using his arms for stability I nearly started crying. I thought about that quote as I smiled and hoped that we continue to experience a “non-thing” over and over again. After 2 years of constant therapy he was finally sitting for longer than a few seconds unassisted. To describe my pride and joy is nearly impossible. I called my husband and immediately texted him the video. I posted it to Facebook. Twice. I wanted to tell every person at the grocery store and the…

Sometimes the tears come when I’m not expecting them. Sometimes I am not even close to tears and then all of a sudden the flood gates open. Tonight as I was rocking Christopher to sleep it happened. I was happy. I was snuggling my boy close to me and kissing his sweet cheeks. As I held my almost three year old and listened to his lullaby music my eyes started to fill with tears. I didn’t mean for it to happen. I wasn’t even sad or thinking of anything in particular but as the tears started to flow my mind took me to places….took me to places I tried not…