I had an experience at the park recently where I didn’t share. Yep, you heard me right. This felt so foreign to me as I am always reminding our 6 year old to take turns and share. I tell him that others need to use the equipment too and to step out of the way if someone needs to get by. Usually we talk about the “park rules” on our way there so they are fresh in his mind. As he ran off to play with a friend I wheeled Christopher over to the adapted swing. Or as I heard one mom call it “the lazy swing.” Ooookaaay. That right…

I vividly remember a conversation I had with a friend when our son started physical therapy. He was 5 months old and still very much an infant. He couldn’t reach his arms to grasp a toy and no matter what we did he couldn’t hold his head up. I recall telling her that at his age he wasn’t too far behind and if we closed the gap early it would all be okay. Comparing him to his peers he wasn’t that too far off. At this point in his life we had no primary diagnosis, only “developmentally delayed.” I would look at milestone charts and see where he should be.…

I’m going to admit something that isn’t particularly flattering. I’m controlling. Especially with our youngest son. I’m doing it all. Please don’t roll your eyes or stop reading and think I’m turning my nose up in an I’m-better-than-you sort of way. It is far from that. Every morning I wake up and immediately care for him after a night of interrupted sleep. I’ve been up multiple times from the beep of his feeding pump and occasional need to be rocked at 3am. I get out of bed, lift him from his crib, and head to the kitchen to get his medications ready. We laugh and giggle as I carry him…

The boys and I were at the grocery store this afternoon, and as usual Alexander excitedly pushed Christopher around and caught the eyes of a few shoppers. There were two in particular who were extra curious, a boy and girl close to the ages 3 and 6. The little girl watched Christopher with curiosity as we zoomed by grabbing a pineapple and plums. I heard “mom, that looks like a wheelchair” coming from her as they began to pass us on the other side by the butter lettuce and bell peppers. What came next from mom surprised me…”shhhh….just keep walking.” Just keep walking? This was most definitely not what I expected…

There are days when I want to tell you that I’m sorry. I want to take you in my arms and tell you that I’m sorry this isn’t what I planned. My dreams for you and your little brother looked a bit different. In my dreams you were running around the grocery store knocking cans of beans off of the shelf and blaming each other. In my dreams you were running through sprinklers and tattling on one another for turning off the hose. In my dreams you were splashing in the tub together with bubble beards on your faces, only to soon be yelling “he’s in my spot!!” In my dreams…

There’s life before, and life after. Before. Before the hospitalizations. Before the surgeries. Before the specialist visits. Before the unknown and constant worry. Before the sleepless nights. Before the hours upon hours of therapy. Before the tears. Before CDG. Life before was akin to walking on a paved path. Smooth with an occasional rock or stick in the way. Nothing I couldn’t walk around or simply step over. Then there’s after. All of a sudden my smooth path stopped abruptly. Up ahead I saw rocks. Not just pebbles, big rocks. Cliffs. Steep cliffs. Terrain never seen before. I looked around and didn’t know where to go. I was terrified and…

I know my son lives with a life threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially days when we lose another of our community. While processing another loss, our son’s disorder PMM2-CDG, sneaks up on me like a dementor* and whispers in my ear I can take him too. Uncontrollable tears ensue. While this dementor looms over me I can’t help but feel helpless and afraid. I begin to feel terrified of germs and my child catching a cold while shopping at the…

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…