Month: October 2018

So what battle you ask? We still aren’t quite sure. Here’s what we know…Rowan has many “abnormalities” many “anomalies” but who wants to be normal anyway? Every week it seems our geneticist and neurologist are “conferring”…aka arguing. One thinks it’s genetic and the other thinks it’s neurological or neuromuscular. They don’t ever seem to agree with next steps or testing. Regardless, Rowan seems to amaze them all with what he figures out how to do. Our son is smart. He is strong. He is resilient. Sometimes his mind knows what to do but his body can’t quite keep up so he gets frustrated. So before you go labeling and judging kids in public when they have a meltdown, know their story first. Rowan is a very good baby but I know we have many moments ahead of us of pure frustration. I feel for you other mamas out there when I see you. You’re not alone. When it comes to size, he has never made it on a chart. When it comes to milestones we are way behind. But without both ends of the spectrum we wouldn’t even have charts or guidelines. So in our home we celebrate inches not milestones. You best believe the day he learns to walk I will bawl my eyes out! I’m learning to stop comparing. I’d love to say I’m there already because I KNOW that no two children are the same…but I’m still working on it. You see, when I get a text showing what another baby in the family learned to do so quickly I WANT to be happy. When I see someone that’s pregnant again, I want so badly to be ecstatic for them. But part of me hurts because I know my son had to work sooo hard to master that skill and I don’t know if that’s in our future. But at the same time who am I to even get frustrated when so many people I know can’t even get pregnant or they have a child literally fighting for their life right now. I am blessed but I am human so I I’ll continue to work on this part of me.

When you’re pregnant and even before, you find yourself daydreaming of how things will be. You picture yourself as a mom and your husband as a dad. You have this “image” of what your family will be like. I am nothing like how I pictured myself. I thought I’d love family gatherings. I thought I’d be fine with people loving on him and I thought that him playing in the dirt and grass would be an everyday occurrence. I was wrong. I DREAD family and social gatherings. I HATE people loving on him and do not allow kisses. And all I can think when playing outside is, “Will this grass break him out since he’s allergic to what seems like everything?, Are there chemicals on the lawn that could harm him since everything goes in his mouth?” People tell me “Just relax. He’s fine. Calm down.” The reality is I can’t just relax. Since having a baby early; having a baby with special needs (something I refused to let myself say out loud for months), I am filled with anxiety. It’s not something I can simply turn off. Some may call it PTSD. Some may say it’s a hormonal imbalance. Others may argue I’m just uptight or pushing people away. Call it whatever you want but I’m just trying to protect my son. What every mother tries their best to do. We have spent more hours than I can count inside Children’s Hospital facilities. And not because of admissions. We have six specialist and three different types of therapy. And as much as I LOVE our care team, I don’t want to spend any extra time there. I say we and our versus he and his because we are in this fight together. Our son will never fight this battle alone. We are his voice and his protectors. His advocates.