Flashes of scenes from the inside of a PICU room, floor 8, Center Wing, of DeVos Children's hospital cloud my mind as this week is the 1st anniversary of H's CF diagnosis. I thought I would be depressed, emotional, pensive - about the shock and then the disappointment, then the grieving for a healthy child that we went through. Instead, I am depressed and pensive about other things, selfish things. I have been holding H. closer lately, studying his features more deeply, memorizing his sounds and smells. I keep forgetting that he has a life shortening illness, and that we have no idea how long he will be in our lives. He seems so healthy and robust - to look at him. No one would suspect, save for his unusually pale hue, that he is a chronically ill child. Just over one year ago, our littlest one was born, and we had no clue.
I currently have several friends who are expecting their own new babies soon, and I have to bite my tongue to keep myself from asking them if they were tested for the CF gene. No pregnant woman wants to be burdened with the paranoia that there might possibly be something "wrong" with their unborn child. We all go into our pregnancies hoping for a shiny, healthy baby - and most women end up with just that. When I was pregnant with my first son, I knew in my heart that he would be healthy, happy, and perfect - and he was! (although the colic for the 1st three months was a hellacious experience) From the moment of conception with my second son, however, I knew something would not be right. I remember crying about it. I knew I was pregnant, and I knew the child would have some sort of disorder. I kept hearing about the autism epidemic over and over on the news, so I got the idea stuck in my head that he would be autistic. Then I kept meeting people who had kids with Cerebral Palsy, so I imagined that would be the fate of my new child. I was so sick during my pregnancy, and so full of fluid. And I knew.
When H. was a baby, he rarely smiled. He was pale-bluish, and had huge cheeks that puffed outward and hung under his chin. People would look at him, and turn their face away as if they had just seen a troll. I kept telling my mom "I just don't feel like he's in there. He shows no emotion". H. slept all the time, and always on his left side. Everytime he ate, he would cry in pain and then have strange aqua colored poops. I found that if I pounded somewhat forcefully on his back, it would calm him down, but he would always burp and then projectile vomit. Our pediatrician had me come to his office several times to work with the lactation consultant, they thought I wasn't feeding H. properly since he wasn't gaining weight - I would go in, and they would weigh him, and then have me nurse H. for 15 minutes, and then weigh him again - They discovered I was doing everything right, but he just was pooping it all away. In hindsight, if I had known about CF, or if my doctor had seen a CF baby before, he would have recognized this as typical, we could have started H. on CF meds right away, and probably would have avoided his near-death at two and a half months. Good ol' hindsight, eh?
But H. didn't die then; he is here with us, getting into EVERYTHING, testing his limits, making his big brother laugh, terrorizing the cat - everything a "normal" baby would do. The only difference is that we have to stop and give him pills before he eats, and we have to treat his lungs twice a day....and keep him out of daycare, away from second-hand smoke, campfires, sick people, germs...but most moms do that anyway. I love my sick baby like any mom would love their child, maybe even a little more, since I know he's probably just on loan from God. Someday we may have to give him back. I hope not. I hope he will outlive his parents. I hope he lives long enough to be around when a cure is found.