Rare Disease Day 2016

It is Leap Day. It is also Rare Disease Day. My sweet little boy is the reason I am talking about this day. This sweet little boy has kept me on my toes since I was pregnant with him. He is always up to something and giving me some kind of scare. From being admitted at 35 weeks pregnant due to low amniotic fluid and possible very early induction to save him, to an umbilical cord that took a wrong turn and took months to close up and heal, to FPIES, to an ER visit yesterday morning because he got his sweet chubby thigh stuck in the crib all night and it was covered in welts, swollen, stiff, and he limped. I rarely have a dull  moment with him.

He is so full of life. He is very brave. I do not see him hesitate in life very often. If he sees something he wants to do, he will 99% of the time go for it. He loves to make me laugh. He loves to feed people or share his food with them. His smile is contagious. I dare you to see him smile and try to keep a smile off of your face. He is a fierce momma’s boy. I say this a lot, but it is true. I am always holding or snuggling him. Did you know, I literally get a standing ovation every time I walk into a room and he sees me. He stands up and claps, cheesy grin plastered across his sweet face. He loves his big brother so much. The way he watches Jackson makes my heart melt. Jackson had his 5 year vaccinations last week and completely freaked out. Alex had been fine mischievously walking around the exam room up until that point. As fat tears fell on my arms while I held Jackson, Alexander walked up, watching. I slowly watched his face transform from curiosity, to concern, to outright devastation, as he too began to sob. I love to hear him say Dada. If I just mention the word Daddy he lights up and says Dada, DA! DADA! That is his biggest buddy. He tries so hard to keep up with the two big guys around here, when they play catch or when they wrestle. Which is frequently to both things.

Then there are the moments where he does scare me because things seem to happen to him at a higher rate than did Jackson. Maybe it is because I am so hyper aware of all things involving him that I notice every small tiny deviation from normal patterns. Or maybe, things just do happen more frequently. It is likely a combination of both. We have had even more situations than I mentioned earlier. I really glossed over things there. I glossed over how scary it was when he was first having FPIES reactions and we had no clue what was happening. I will never forget when his tiny body went into shock and what he looked like. I will never forget the fact that when he was born, he didn’t cry. The cord was wrapped around his neck and the nurse took what seemed like an hour to get him breathing. It wasn’t an hour, it was probably a few seconds, but in that moment, having given birth previously, it seemed like an eternity.

His may not be the most dramatic rare disease. His may not even be the most dramatic case of FPIES. I am so incredibly thankful for that. Every day I am thankful that when it comes down to it, so far, he has just scared us with things that we are capable of managing in a healthy way. It doesn’t take away from the fact that these things seem to happen to him or that he does in fact have FPIES and is IgE allergic to bananas. Most tests came back negative, that one did not. We are still waiting on a few more results, including avocado and kiwi. I can manage these things. I can keep him safe. I am thankful that every day I get to see that toothy silly grin and those big blue eyes and that raspy voice say mom mom mama mom mama mama. There may be moments where I am utterly exhausted or feeling overwhelmed with doctor and hospital visits or just from worry or from regular mom stress, but all it usually takes is a hug and snuggle into my neck to bring me back down. And if I am lucky, big brother Jackson is telling me I am the most important thing in the world, even more important than monster trucks, and you know how much I like those mommy!

Happy Rare Disease Day 2016!