I'm tired of being an "OI mom" today

Sometimes I just want to be Jaela's mom. Not an OI mom. I'm tired. I'm tired of doctor's appointments; I'm tired of hauling oxygen tanks; I'm tired of physical therapy; I'm tired of IV's; I'm tired of watching Jaela in pain; I'm tired of fighting doctors and nurses; I'm tired of scheduling; I'm tired of phone calls. I'm tired.

I hate it when nurses do things behind our backs, I hate it when they don't listen, I hate it when they treat my child badly, I hate it when they treat us like we're a burden. I absolutely hate it when we're judged immediately by the way we look. People always assume I'm a young single mother that got in trouble and now I'm in deeper than I can manage. I know I look like I'm 15 years old. I'm not. I'm 24 years old, I have a bachelor's degree in Accounting, Jeremy has a bachelor's degree, he has a full time job and supports our family, we are married, we planned for this baby, we wanted this baby, we love this baby, we can take care of this baby. I can't count how many times people come in and talk to us like we're incompetent, then listen (well sometimes) to us for a minute, their jaw drops, then finally talk to us like we're adults.

Tuesday was the last straw for me. I'm not going to be nice anymore! We'd had busy weekend with a sleep study all Sunday night, five poke IV at Primary's, Pamidronate, Cardiology follow-up, and sleep study results on Monday. Shriner's again on Tuesday. We waited 1 1/2 hours at Shriner's for the nurse to even get the PAM started. We had to go ask three times where the nurse was and all we got was a grumble that she'd get to us later. When she finally got there, she didn't know how to run the equipment (mind you this was the charge nurse), and hardly spoke a word to us. When the infusion finally ended we had to drag her back into the room. She wouldn't even talk to me. She told all the information to my mom. Jaela's IV was in her head so her hair was taped down.

I told the nurse that I would take the IV out at home where I could slowly do it and save her hair. The nurse practitioner, her boss, even told her that I could do it. She scowled and whipped out her scissors and promptly cut a big chunk out of the front of Jaela's hair. When I gasped she said "what?" and my mom told her I didn't want Jaela's hair cut and she snarled "it will grow back."

I was so angry! The whole way home I was fuming. When I finally got the courage to inspect the damage I cried. This is what I could save. She cut four inches by the way. Scalped her. And I know it doesn't seem like a lot, but when you're nine months old and have thin hair, it's a lot. And it was probably mostly the manner in which the nurse did it, but I'm still SO angry.

I know it may seem ridiculous, emotional, and irrational to cry over cut hair but I'd had enough. Even though this nurse didn't know us and obviously didn't care about us, it doesn't excuse her behavior.

This is where the clump of hair should be. I know to most it won't look too bad, but to an exhausted mom it's devastating.

Alright, enough complaining. How about some pictures of the cutest little girl in the whole world?!

"Please change my bum dad?"

"Get me out of here!"
So tiny!

Happy Halloween!