My daughter was born with cystic fibrosis (CF). CF has been a catastrophic disease, historically fatal in childhood. CF is not pretty; it affects nearly every organ system, slowly and systematically damaging them. People with CF have thick, sticky mucous, which clogs their airways, pancreatic ducts, sinuses, and intestines. This mucous causes numerous health issues.
CF has been around for a long time. In the Middle Ages, a poem warns parents, “Woe is the child who tastes salty from a kiss on the brow; he is cursed and soon must die .” The children with CF at that time survived only months. They suffered from malnutrition and serious infections. They had no chance at survival.
This curse continued until the mid-1900s as antibiotics were discovered and became more widespread; kids survived a bit longer, but they were really sick, still not often to adulthood or even school age.
In 1955 a group of parents got together and started the Cystic Fibrosis Foundation in America. Their parents wanted to give them a chance. They wanted to support each other, but more importantly, they wanted a cure; they wanted their kids to grow up and survive. They wanted more, and they worked hard to get it.
In 2006 when my daughter was born, things had come a long way. There were new antibiotics, different choices of medications, and treatments. Much of it could be done at home, not in the hospital.
These kids were doing well, but their lives were full of cultures and pills, hospital stays for tune-ups, and hours of treatments every day. Between illnesses, they were usually healthy enough to go to school.
These kids would, on average, survive to be 32: Yes, these kids would, on average, survive to be adults.
Things have only improved from there, better drugs, novel treatments, new medications, major improvements, and advancement. The face of a once-deadly disease has been completely altered in this generation. There are now drugs that essentially correct the basic error of CF; it is entirely possible that someday soon, these kids will take a few pills a day and otherwise be completely healthy with no hospital stays ever.
This is a miracle.
These kids will survive, they will be adults, and they will have jobs and lives and children.
These kids will live with a chronic illness every day of their lives.
This is a success story of this generation, a story of a modern-day medical miracle.
CF is not the only success story of this generation.
Kids with other diseases are surviving and thriving. They are growing up. They are going to prom, not to funerals.
The problem now is different. It is new.
Now, instead of grieving parents, society needs to deal with parents of catastrophically chronically ill children like my daughter.
A generation ago, my child would have died as an infant, possibly in early childhood, but she would have died, and society would have dealt with me, acknowledged my Grief, and moved on.
Today, I have a living, breathing child who goes to school, who goes to church, who is part of society. I have a child who will likely grow up.
But this technology comes with a cost.
The cost is pervasive. It is every aspect, every single aspect of our lives.
Today I have a child who has been in the hospital more times than I care to mention; she has had three major surgeries and so many minor surgeries and procedures that I have lost count. She takes a handful of medications daily; she spends hours every day doing treatments to keep her airways clear. Our refrigerator is so full of medications that sometimes I wonder where we will keep the food. We meet our deductible every single year in January. I can not remember the last time we did not hit our out-of-pocket max. I miss weeks of work at a time. Her medications and absenteeism need to be accounted for and accommodated at school.
There is more, so much more.
It is a unique position, being a physician mom to a seriously ill child in this generation.
The reality is that we exist for the first time in history.
Previously, there was no need to accommodate us, no need to understand us, and no need to know what we needed or how to help us because we did not exist.
A generation ago, our kids would be dead; they would not be going to kindergarten, asking a date to prom, going to college, living in a dorm, or walking down the aisle.
A generation ago, I would have been grieving her death, not celebrating her survival, not fighting for her inclusion.
This is the success story of this generation.
That she exists.
That I exist.
That chronically ill families exist.
With this, though, comes a handful of new experiences, new circumstances, new problems, and new things for society to explore and figure out.
We are different; we face different challenges and obstacles. Society has not caught up with science yet. Our kids are surviving but are they being accepted? Are they getting what they need?
Or are they being lumped as special needs—into a one size fits all bucket?
What about us, their parents? Where do we fit? We are crazy busy balancing life, work, family, and our kids’ high-level special needs. Making it all work, juggling it all every day.
We have no road map. We do not have a generation that went before that walked this road to tell us how we should feel, what we should do, where we should look, and what resources are available.
We are on a journey, a whole new world.
We are paving the road for the next generation.
The generation where our kids survive and grow up.
We are the navigators of this new world.
It will be an exciting, interesting, and, yes, very stressful chapter to write.
But write it, we will.
Christine Marie Deeths is a family physician.