Its been a long time since I cried over this whole situation. Lately I have really felt on top of things… getting things done in an orderly and timely manner. I have pretty much felt like I understand where we have been and where we are going and how to get there and who to ask for help. Her surgery went so well I should have known it couldn’t be that easy.

I just need one minute to feel sorry for myself and my baby.

The past two weeks have been hell. Back to the “almost as bad as the month the in ICU” type of hell. I hate being uninformed. I hate not knowing what the HELL is going on! I hate not having anyone who can explain it to me and I hate that I feel the need to cry over this.

I was sitting in my office tonight trying to update Kyleigh’s medical records because I was so embarrassed the last time we went to the DR. I had not update since JUNE!!!!!!!! What a horrible mother! I know. I suck. Life sucks. VACTERLS sucks.

So I am trying to shove all this information into a 3 ring binder when I realize that in less than two years my child’s medical records have grown into a 5 inch binder. It started with the heart notebook at 1.5 inches, added another .5 inches for the colorectal stuff. Topped that off with additional NICU and Cardiac records and I sit here transferring it all into one cohesive book. And man what a book it is. I have had several people lately ask me if I will write a book about Kyleigh and how to be an advocate for your child. I might… truly I get a little closer everyday. I have felt so lost throughout this journey. And it sucks to be lost and uninformed. Knowledge is power and I feel empowered when I know what is going on. Its a good feeling!

So I sit here… and I hate that my child has a 5 inch notebook full of medical records telling every little details of her health and anatomical being and I realize…. at home on her shelf sits an empty baby book. I have never had the time to fill it out… to fill it up with beautiful cards and tiny arm bands… to write all about her first poop (she’s never had one….) or her first cry…. ( I never heard it). We missed her first birthday and didn’t even party because she was sick and we were on our way to Cincy for another surgery. It pisses me off that my perfect princess is being robbed of her perfect life. And just for this minute I feel guilty and sad and sorry. It sucks that I will remember my amazing princess as a “medical” case. I am afraid I will forget the little old man laughs and babble talk…. “ah da?” The tossing in the air and tiny blue feet. My brain is so full of so many other things that it is pushing out all these things that I want so badly to remember.

Normally I say I wouldn’t trade our experience with Kyleigh for anything…. but just now for this moment… I would. I want my baby’s first year back. I want to bring her home to her perfect princess room without monitors and feeding tubes. I want to take her somewhere and NOT fear that she smells badly. I want the year that this illness has stolen from me and my family BACK. And it pisses me off and I have the right to feel sorry for myself and my baby girl… just for this minute.

Popularity: 1% [?]