I’ve touched on this before, so those that are regular readers may find this repetitive, but here you go.
I am so unbelievably frustrated with everything. I wake up every day wishing that I could just STOP, just throw it all away. I want to stop having to deal with all the appointments and specialists and everything else. All I want is to be able to deal with the “regular” crap, like having to baby-proof the house or worrying that he’s going to fall down or knock something over.
But no, instead I have to worry about if he’s even going to be able to go to school, have friends, RUN, do anything. I have to worry about if he’s ever going to potty train or speak or a lot of those things that people take for granted. I WISH I could be one of those people. Instead I have to be “that” person, wanting everyone to get some perspective on how awesome it is that they have a healthy baby. That person is an asshole. That person is me.
I wish I didn’t know what it was like to sit in the maternity ward without a baby in the bassinette and to see people from my prenatal class with their baby, walking the halls. I wish I didn’t know what it was like to have to travel to meet your baby in the hospital, or to see what it’s like to have your baby filled with more tubes than he has body mass. I wish I didn’t know what it was like to have that roller coaster of emotion when you finally give birth, only to have to prepare to say goodbye a few days later, and then for that to also change, to “preparing for the worst” in terms of his condition.
The shitty part is, I DO know what that’s like. I can now give people advice and say things like, “Oh, the nurses/doctors there are awesome”, or “Ask for Nurse ___, she’s the best”. I also have to deal with the circus of people coming through my house on a weekly/biweekly basis, and the appointments that need to be made and attended. It also makes me sad that one of the most common “search terms” that people type in that leads them to my blog is “hie baby”. That means that there are plenty of other people just like me.
I wish that I had a magical fairy wand, I would go around the world to every NICU and cure all the sick babies. Because there is really nothing worse, I find. You spend the 9 months happy and excited to see who your baby looks like, what it will act like…..and then BAM! something happens and your entire world is turned on it’s head. Instead you now spend each day with a sense of dread, like “is this the day he’ll have a seizure”? Admittedly, that worry has subsided a bit around here, but it’s still on my brain quite often.
Since he is at risk for seizures, fever is a worry. Luckily he hasn’t gotten one yet, but that’s yet another thing to add to the list, one that we’ll have to worry about for years, or possibly his entire life.
The pediatrician we saw at the Stollery said that sometimes babies that have seizures in the first day or two at birth never have them again. Obviously I hope that’s us, but you really don’t know until the day that they die whether that’s the case or not.
All of this is so frustrating because I wish I could stop, but I really can’t. We’re giving Noah the best possible chance at a normal life with every single appointment. I want him to be able to run and play sports with his friends, be on honor roll at school, be a fireman or a doctor or Prime Minister or whatever he wants to do. It just sucks that we have to trudge through the mud for the first few years to achieve that.
As annoying and wearing it is on us, it’s all for Noah. We want him to have the best possible opportunity at life, so we have to put on our big boy pants and go to yet another appointment or spend hours trying to get him to grab things/sit/whatever.
I hope that those people searching for information on their HIE babies can read this blog and maybe get a little bit of hope. We are an army, for the lack of a better metaphor, trying to get through the crap in hopes of a better life for our babies. We may not be a success story yet, but I am really hoping that there is one in our future. I want the same thing that everyone else does, we want our children to have a kickass life and to just be happy. For some reason we got a few mountains to climb before we get to the field of beautiful flowers (crappy metaphor #2).
They say that you are only given as much as you can handle, and I hope that’s true. I have to keep telling myself that eventually there WILL be an ending, and we have to do all that we can to make it a happy one.