Charlie spent the first three weeks of his life in the hospital. The first three weeks having test after test run, being poked over and over again. Feeding tube, oxygen, mri's, cat scans, x-rays, ultrasounds (pretty sure there isn't a part of Charlie we haven't seen detail of), iv's, bone marrow biopsy the works.
Doctors from all specialities came to see and examine him. Cardiologist, pulmonologist, neurologist, neurosurgeon, oncologist, hematologist, geneticist and probably a few I still can't remember. Each time a doctor came to see him, or a nurse did his vitals, or a lab tech came to draw yet more blood from this tiny little baby they'd all comment about how "good" he was. He'd be so calm, he'd lay there let them do their thing. He would barely cry he handled it all like a champ. It took me a while to realize it but of course he took it well. Of course he would just stay calm and just lay there. He was NEW. He was a brand new baby and this was the only life he knew. He had know idea that this wasn't normal. He had no idea that babies are born, they go home with their families, they eat from breasts/bottles, sleep in cribs, aren't attached to a million monitors. His normal life, his normal routine wasn't being interrupted. It was the only normal he knew.
I struggle with this notion. Part of me wants to be grateful for that. Be grateful that it's easier on him because he had no idea that this isn't how it's supposed to be. The other part of me wants to cry and scream and rage and just be so fucking angry because this should not be his normal this should not be his life. They told me over and over again in the waiting period that we shouldn't worry too much because babies aren't usually born with cancer. When they explained to me the bone marrow biopsy and what they were looking for I asked how likely it was that it would come up that he had leukemia. They told me that more people don't have leukemia then do and usually the test shows no leukemia. I know they didn't promise, I know they didn't guarantee but it certainly feels like on some level I was lied too. Babies being born with cancer is rare, it doesn't generally happen. Yet here we are, it happened to us.
I've never been big on "that can't happen to me" because the reality is that's just not true. Things happen and they are never things you expect. But the reality is babies being born with cancer doesn't happen. Most people in their lifetime not only will never have to experience it they will never have to know anyone who is experiencing it. I went from so excited to meet this baby, so excited that he was my last, so excited to not be pregnant anymore so we could start our new life with our Charlie to "omfuckinggod my baby has cancer". That is not a shift you can ever prepare yourself for that's not even something you even worry about in the back of your head. All the things you worry about when you are pregnant cancer isn't one that crosses your mind.
The other night we had to take Charlie to the emergency room. He was crying inconsolably and was throwing up. As it turns out he had an upset tummy from the protein powder that they had us add to his breastmilk/formula mixture. Unfortunately crying & vomiting are signs that his shunt isn't working. A catscan & an xray later showed us that his shunt was working just fine and it was just an upset stomach. My baby was at the emergency room because he had gas. That is a first time mom thing. I am a third time mom, Charlie is my third baby. Any other baby I would have given him gripe water, massaged his tummy and rocked him all night if that's what it took. But it's Charlie and he had to go get checked out just to be safe. Just one more thing that isn't fair in this reality of ours. We can't ever just have a fussy baby. We have to worry incessantly over every little thing, every little cry, every time he's sleepier than normal we have to worry.
Every day I just want to tell Charlie how sorry I am, how sorry I am that this is his life and this is how it has to be. We all love him and want him to have an incredible life. We want his reality to be entirely different. We want our reality to be entirely different. I wouldn't give up Charlie for anything in this world but I wish that there was something I could give up or some deal I could make to make his reality different. To make him healthy and whole. If anyone knows of any devils, demons or leprechauns out there making deals for souls or whatnot send me an e-mail because I would do just about anything to change this babies reality.
No comments:
Post a Comment