A rare disease diagnosis is like a plane crash.
After talking with dozens of parents, reading hundreds of journal articles and parenting a child through a rare, progressive disease I can say that parental survivors of a rare-disease-plane-crash are told 1 of 3 things:
1. Help is on the way
2. Help is not coming.
3. Help may or may not reach you in time.
We all hope to be type 1 survivors. That despite a hard diagnosis, prognosis is good, treatments are available and regiments result in full cure or remedy. There are solutions. Hardships have an expiry date and life settles into normal living. You can walk away from this plane crash with minimal physical scaring but deeply embedded emotional trauma. So you take your child’s hand and plan a full, normal life.
We all fear to be type 2 survivors. You’ve crashed, help is not coming and your child’s diagnosis is fatal. You just have to wait it out and help that child die as the parent. You do not walk away from the plane crash. You die right along with the diagnosis and when your child succombs, you shed your former self and become an entirely different being. No one will ever understand your story and you make everyone uncomfortable talking about it. You will die over and over and over again with each anniversary, each lost milestone, each should have been. You are our worst fear. You are unnatural, having outlived your child. So you take your child by the hand and help them fade to their disease, as gracefully as you are empowered to do so. You become the most extraordinary kind of parent and continue to parent that child long after they have perished from the crash.
We are firmly planted in type 3 survivorship. We’ve crashed and are desperately holding out hope, that help will come in time to save Red. We simultaneously plan normal childhood living and the inevitable decline of her disease that brings sickness, immobility and uncertainty. We plan JK registration with at home dialysis care systems. Emotionally we navigate further into parenthood with visions of Red there, and not there. We are bereaved and enjoyed. We crawl away from the plane crash inch by inch. Our bones mend abnormally, but we function through its knitting pain. So we take her by the hand and fall down with her. We pick ourselves up. We fall down. Each step more shakily than the first. Then we hope to God that our feet get us to stable ground and that the horizon point is clear, and long.
Regardless of it’s trajectory, a plane crash rare disease diagnosis has impact. It carves the landscape of parenthood differently. It brings trauma and hauntings and is the hardest fucking pain you are forced to live through.
Dearly arrived survivors, the smoke may not have cleared long enough for you to know which camp you preside. Just know other souls are out there, parenting through the aftermath right along with you. You are already doing the impossible.