Friday, May 3, 2013

When will I wake up?

I hate Friday's. Kinda weird since I used to love them. I just feel like crap...like I'm in a nightmare and can't wake up. Avery's 10th appointment went just as planned and she was as good as she always is. We had a 4th year medical student come in to see her today and review her case. Talking about it always makes horrible memories come up.... which is why I say everything is "good" when people ask.  But how "good" can things be really?

It's so easy during maintenance to kind of forget what's happening. And then right when you feel like things are as normal as they can be you get slapped in the face again. Every three weeks it seems like I'm stressing about something new.. whether her counts are up, or when the next MRI is going to be, or how much sleep we are going to get while she's on steroids, or if her having a bad fall everyday is because of her treatment or just hoping that she is still responding to treatment.

I know we have it good. I know Ave doesn't have things as bad as some other kids that have to be in-patient for their treatment, or tons of other tests every time they go into clinic.... in fact I thank God everyday for how lucky we are that she has what she does have, but this doesn't make it ok or better for us. What two year old has had more radiation tests then some 80 year olds? Or who will be sedated almost ten times before her 3rd birthday?

I'm so sick of people trivializing what she's going through. I'm sick of hearing "oh all my kids acted like that." Or "that's probably just her personality" Or "oh you can't even tell she's losing her hair". How could anyone know what she's going through when they aren't there for every single test, needle poke, steroid pill, or poison injection??

Nothing about this is pretty.  I just wish it was over.

2 comments:

  1. I wish and pray it was over too!! There is no way to sugar coat everything you are dealing with! CANCER SUCKS!!!!!! I pray that soon you will be able to find some peace as you and your little family fight this horrible monster!!! Hold on.....the light will come :)

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  2. So sorry:( I wish there was something I could say or do to make it all better. Hang in there! You are stronger than you know:)

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