“It’s not your fault.”
This is the one thing I wish I had told my mom so many times in my life before I lost her to breast cancer seven years ago. I wish I had expressed that it was not her fault that I was born with the genetic terminal disease cystic fibrosis. I never once blamed or resented her for the fact that I had inherited one copy of the defective CF gene from her (and also one from my father). I can only imagine that she must have blamed herself every day that I had this disease and what having it meant for my future. I worry that she felt guilt every day for my CF-laden life as a whole – something she probably felt she was half responsible for giving me, and fully accountable for dealing with as my only actively involved parent.
When a child is diagnosed with any setback – disability, disease, chronic illness, or deformity, I imagine that the emotional trauma must be similar to watching horrific battles of war take place – the war that no one comes back from and shares or repeats to anyone else. The war no one ever asks about. The war that is relived time and time again in the mind of the parent.
I was diagnosed with cystic fibrosis when I was three months old.
I had severe failure to thrive and was literally starving. The digestive system, my digestive system – stomach, pancreas, intestines – is just one of the things that cystic fibrosis causes to malfunction. It gets into every organ. But it most dangerously affects the lungs, causing lung infection after lung infection to the point of fatality at an early age or the need for a lung transplant – which is equivalent to trading one set of problems for another. For me, it was a trade well worth it – two double lung transplants have given me more chances at life than I would have ever imagined.
But children born with anything from a missing limb to my own terminal diagnosis of CF can live a whole, although maybe unique, kind of full life. In some aspects my life is not on the same timeline as my peers, and in some aspects I have done so much more, and all of that is okay. There is no timeline to being happy or grateful. My mom gave me an empowering upbringing that allowed me to believe that I could conquer anything – that we could outlast everything that CF brought against us. Our fighting genes would not let us lose, so it never occurred to me that there were things that I could not accomplish. The things that I inherited from her, bravery, confidence, will, faith, fight, were all stronger than one copy of a defective recessive gene.
I wish I could tell her I do not blame her, or begrudge her, but champion her for how she dealt with our prognosis. If you are a parent facing a seemingly insurmountable diagnosis of your child, protect your child but don’t shelter them, empower them, try to understand their challenges and support them, listen to them, allow them, maybe more gently than some, to live. Be sure to forge a relationship with them, fight with them and even for them, console them and push them. More than anything in the entire world I needed my mom, the most and all that she could give me as a child with a rare set of problems. She was my mom, but also my advocate, my fighter, my hand holder, my tear catcher, my laughter and our relationship was my answer to every “why me?”
I may have inherited a genetic death sentence but I also inherited a great, giant, grand will to live from my mom – all that came from her genes just as much as cystic fibrosis.
Edited by Julia Bennett
The Cystic Fibrosis Foundation. Accessed May 15, 2015
The Mayo Clinic: Cystic Fibrosis. Accessed May 15, 2015