People like boxes. They help with organization. They help with the storage of materials. They make things neat and tidy. They really do make life easier. That is, unless someone tries to stuff you inside one of them.
People are always trying to place Noah in boxes. Not really literally, just figuratively. Every medical procedure has forms containing many boxes. I am asked to check the boxes that apply. I never check any of them, except the "no" boxes. Then I am asked to explain myself. Does your child have a lung disease--no; then why is he on a ventilator? Does your child use oxygen--sometimes; how much oxygen--depends on his sats. Is your child allergic to any medication--no but please do not give him propofol as a sedative because it could cause heart pauses; Does your child see a cardiologist--no but we do annual holter monitoring. See the pattern? We do not fit into any of their little boxes. This just seems to confuse them. It is very difficult to comprehend that Noah has a trach and is on a ventilator but is perfectly healthy. Yes, we do have to monitor him carefully but he lives his life just as you and I live ours.
All of this can be very frustrating. CCHS is such a complicated disease. Every child is different. Even children with the same mutation number can have different issues. That is what makes this all so challenging. Our kids do not fit into anyone's box. It doesn't matter how many times you try to cram them in there, they just won't fit. We live outside the box.
I am hoping that one day there will be a cure for CCHS. It would be nice to know that there was a simple medication that can make Noah breathe (there is currently a study being done with one of Noah's brave CCHS sisters, Zoe, who is testing this medication). But until then, we continue to live outside of the box and will teach Noah that he is a unique individual who has a great capacity to teach the world about living outside of the box.