I know many people would say that i don't have a problem being open about sols condition... But it just bothers me to be trying to do something normal and everyone making it seem so abnormal. I don't know how i want people to react but i don't want pity.
Nothing makes you feel more abnormal than having a fill in nurse constantly remind you how not normal your situation is. As if my week wasn't different enough, i had to have this fill in nurse basically ask me, well why dont you just fix him. Just fix him. Whoa! Why didn't i think of that!??? There we go of course ill just fix him. That makes sense. Well because you know there was this girl who was born with no bones and doctors overseas were able to find the problem and give her the missing component and she started growing bones! Surly if they did it for bones they can fix muscle. I wish i could tell that to the other hundreds of parents with kids with muscle conditions and tell them all they need to do is fix their child and go overseas. There are so many problems with this. First i had to remind her what an undiagnosed condition meant... And also i need to see if that story is even real. And lastly if i was a millionaire i bet we could find a genetic doctor to find the problem and fix it. But with out money, with out awareness, a cure is far away. Besides that, i daily am trying to find something i can do to help and im so glad it took two people this week to break me. First, the lady with the healthy, normal baby, exactly sols age making me feel like there will never be a time we could go out with Sol and just have it be normal, and the nurse who is very ignorant to muscle conditions, spewing her mouth. It is my fault too because I asked to have a back up nurse be trained and I should have known... should. have. known. To be fair she actually doesnt have a lot of experience and is not an RN so Im not even sure why they sent her, I guess so she could see something new and rare or something like that. She told me how the other kiddo she watches is going to get his trach out soon and then the family can go back to a normal life. Sometimes we have new normal, but ignorant people will never see that. Black and white that is it.
I was really upset after the nurse left and when I started this post, I couldn't shake it off. But now after a sleep and playing with Sol on the floor, I remember how it doesn't matter. I can ask to not have the nurse back, but it sucks that it is so difficult to find good nursing help. Her opinion simply doesn't matter. I've been too spoiled to meet so many people that are more understanding of the situation and take the time to listen and try to understand the situation instead of just throwing out all their opinions with out knowing a single thing about the situation.
The show must go on though.
But you should have heard the conversation I had with her explaining how it isnt just that easy to "fix" it... I did get her to shut up for a few seconds at least.
Nothing makes you feel more abnormal than having a fill in nurse constantly remind you how not normal your situation is. As if my week wasn't different enough, i had to have this fill in nurse basically ask me, well why dont you just fix him. Just fix him. Whoa! Why didn't i think of that!??? There we go of course ill just fix him. That makes sense. Well because you know there was this girl who was born with no bones and doctors overseas were able to find the problem and give her the missing component and she started growing bones! Surly if they did it for bones they can fix muscle. I wish i could tell that to the other hundreds of parents with kids with muscle conditions and tell them all they need to do is fix their child and go overseas. There are so many problems with this. First i had to remind her what an undiagnosed condition meant... And also i need to see if that story is even real. And lastly if i was a millionaire i bet we could find a genetic doctor to find the problem and fix it. But with out money, with out awareness, a cure is far away. Besides that, i daily am trying to find something i can do to help and im so glad it took two people this week to break me. First, the lady with the healthy, normal baby, exactly sols age making me feel like there will never be a time we could go out with Sol and just have it be normal, and the nurse who is very ignorant to muscle conditions, spewing her mouth. It is my fault too because I asked to have a back up nurse be trained and I should have known... should. have. known. To be fair she actually doesnt have a lot of experience and is not an RN so Im not even sure why they sent her, I guess so she could see something new and rare or something like that. She told me how the other kiddo she watches is going to get his trach out soon and then the family can go back to a normal life. Sometimes we have new normal, but ignorant people will never see that. Black and white that is it.
I was really upset after the nurse left and when I started this post, I couldn't shake it off. But now after a sleep and playing with Sol on the floor, I remember how it doesn't matter. I can ask to not have the nurse back, but it sucks that it is so difficult to find good nursing help. Her opinion simply doesn't matter. I've been too spoiled to meet so many people that are more understanding of the situation and take the time to listen and try to understand the situation instead of just throwing out all their opinions with out knowing a single thing about the situation.
The show must go on though.
But you should have heard the conversation I had with her explaining how it isnt just that easy to "fix" it... I did get her to shut up for a few seconds at least.
No comments:
Post a Comment