The Special Mom

I was having one of those I want to crawl out of my skin days the other morning. I was feeling down about myself and my body. Definitely woke up on the wrong side of the bed. At 6:30am I already didn’t feel thin enough or just plain good enough. Good morning body shaming. I could barely put my shirt on due to the aching in my left arm. I was exhausted as soon as I stepped out of bed. I so wished I could have crawled back under the warm covers and let the day slide by. (And waking up with stronger, thinner body would have been a plus.)…

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…