Having to process a new diagnosis is difficult. First you are in shock. Then denial. And then, finally, acceptance. After all, giving a name to what is going on with your little miracle also gives a measure of comfort because you can be given a new guide book, a new map, a new compass and a new language…and you can start planning your next step. When the doctors have no idea what is going on with your miracle and you, as the care taker, has to live in a state of limbo…well, that is excruciating.
Two months ago I had to go down the road of having to deal with a new diagnosis. Even me, a veteran of walking down this special needs road, had to once again deal with learning to process what the doctors were telling me.
Mighty Z’s Gastroenterologist called me and told me that Mighty Z’s Fluoroscopy had come back and it looked, smelled and acted like Hirschprungs Disease and she was 90% sure of the diagnosis. After I went through shock, denial, and then acceptance, I gathered myself up and hit the ground running: I read everything I could find, looked at other peoples Fluoroscopies, and talked with other mothers of children with Hirschprungs Disease. It was those mothers gave me the tools I needed to navigate this new path I was forced to go down.
During those two months, all of Mighty Z’s doctors shook their heads and told me that Mighty Z would have to wear a colostomy and there was no way around it. Waves of anxiety flooded me…how do you tell a 12 year old girl who goes to school and has friends that she would have to wear a bag on her body that poop went into? We went to talk to the surgeon about doing the rectal biopsy and then ultimately doing the colostomy bag, but I went into the meeting hoping to talk him into doing a pull-through (a surgery where the surgeon cuts out the bad piece of colon and then reattaches the healthy colon to the rectum and thus not needing a colostomy bag). I left the surgeon’s office on Cloud Nine because he heard my plea for the pull-through and agreed to do it after we did the rectal biopsy, which they were only doing to follow protocol, because everyone knew that the biopsy would come back positive for Hirshprungs disease.
And then it didn’t. The moment I found out that the biopsy came back normal (meaning Mighty Z did not have Hirschprungs) I was shocked, and then ultimately upset. One would think that if the report came back that your child does not have a horrible, rare disease that you would be happy right? NO, I was furious! Not only was I mad about the report, but so was every one of Mighty Z’s doctors. You see, with Hirschprungs disease, we had a plan and we all knew what to do. Now we have no idea how to help Mighty Z.
Ideas are being passed around now like cards at a poker table and every one of the ideas make Hirschprungs look like a walk in the park. The words that no mother ever wants to hear, like MitochondrialDysfunction, are tossed around like candy at a birthday party. I am back to the fear of the unknown and my new map, compass and new language are now of no use to me. I am sitting and waiting on what is to come next. I am back in limbo and the pain that accompanies the “sit and wait.”
What do we do now? We go on with life. Mighty Z is almost finished with 5th grade, she is gearing up to audition for the National Piano Guild and is excited for summer. I am trying not to let my imagination get the best of me and enjoy the moment that I am in.
In the meantime, I am also reaching out to other doctors in search of new ideas. Cincinnati Children’s Hospital looks promising in helping figure out what is going on with our sweet Mighty Z. So maybe a little road trip to Cincinnati might be in the cards for Mighty Z and her mommy this summer.