I want to thank all of the ROHHAD mom's I have talked to either by phone or email and who are always here to support each other. I couldn't do it without them by my side. I honestly don't know how the few parents made it before ROHHAD was officially noted. There was no one there to help them. So I am grateful and amazed at how everyone has come forward, introduced their family to us, and shared pictures and stories of their child.
I can't express how horrible this disease is. I go crazy trying to figure stuff out to a point of completely confusing myself and having to go back and do it all over again. I'm told by one doctor that my daughter is on a progressive schedule to stop breathing by age 7 and then I have Oncology working their butts off to find a way to stop it.
I used to fight the doctors - only because the first 2 years of this we had horrible doctors that didn't care and it was easier to blame us. Now my only hope is in the hands of the doctors. We absolutely love our doctors at Johns Hopkins. Who else would give a mom their email addresses knowing she will email about everything and anything.
We're tired, we're frustrated, and we're scared. We go to bed wondering if this is the night Haven stops breathing.....I go to work and sometimes I wonder will I get a call that Haven is in the ER. I know people think I'm just an angry woman but after almost 4 out of 5 years of your child having something different about them that no one can tell you what's wrong and they blame you as the problem wouldn't you be angry.
I have tried to relax and let the doctors do their thing. No one knows how to fix this and no one knows where it comes from or why it happens.
Out of 20 or so symptoms of ROHHAD Haven has 11 or so. There are more but 11 are the main ones.
My child has NEVER been sick a day in her entire life but she has Cancer and ROHHAD.
Haven has NEVER cried a day in her life --- she's 5. THAT'S NOT NORMAL.
Haven doesn't feel pain - AT ALL. Cuts herself, falls, hits her head and has a huge lump, has 3 infected toes that get stepped on ---- NOTHING. No pain, no crying, no screaming. THAT'S NOT NORMAL.
She can pass out in the middle of a sentence in the middle of the day BUT SHE CAN'T SLEEP AT NIGHT!
We are frustrated....We are tired....
What keeps me going? How do we keep up the fight?
1. Haven's beautiful smile and her ability to keep laughing
2. Kris' patience with me and how he is always taking care of Haven
3. The ROHHAD mom's and dad's
4. The children that we can possibly help by sharing our stories
I can honestly say without your encouragement and help with spreadsheets and articles and stories of your children I would be insane. THANK YOU!
One mom who is constantly making me laugh daily -- even when she can't sleep and has blood shot eyes --- she makes me feel awesome! THANK YOU JULIE!