The Truth About Growing Up With a Cystic Parent
Anybody who has ever driven in an enclosed vehicle with a Cystic knows what I mean when I say that it can be very uncomfortable. Personally I have always found it humorous. I guess that’s the giggling six year old in me who thinks that flatulence is about the funniest noise that can be created by the body. Travelling with my Cystic mother has given me many opportunities to laugh and show off my comedic side. On any given road trip you could find me rolling down the window at warp speed, thrusting my head out while screaming that my Mom was trying to kill me. At other times either of us would place the blame on one of her lap dogs or one another. Over the years we’ve learned to laugh about these types of things, and about life in general.
I wanted to write something that would tell you exactly what growing up with a cystic parent has done to me, but after thinking for the past two weeks about it I can not tell you. The problem is that I have never had the opportunity to have grown up with two non-cystic parents, and therefore I have nothing to compare my experiences to. If I had to break down and say that there was one characteristic of a child with a cystic parent, I would say that we are generally more aware of the greatness of life at an earlier age than many other youths.
Since I can remember my Mom would set me down for a talk. “You know that Mommy loves you and that I would never leave you on purpose… but you know that sometimes Mommy gets sick and has to go to the hospital….” This was the speech
I have heard many times, and as the years went by I was taught about CF and what it does to a human body. I understood that what Mom has was nobody’s fault, just the draw of the cards.
I have lived everyday since I can remember knowing that at anytime my mother could be taken away from me. Sometimes this was hard on me when I was in my younger years. I have a new understanding about it now. Here’s a story:
A man has two sons. The youngest plays high school football, is popular with the ladies and is always on the go. Dad just doesn’t seem to have much time since his older brother contracted HIV (or some other potentially fatal illness) two years ago. Father spends all of his time with his eldest son thinking that they should get their time in together now. One day there is a knock on the door and there stand two police officers with dismal looks on their faces. “It’s about your son. There has been a terrible accident.”
My point is that nobody can take life for granted. We never know when our number is up. Doctors have been telling my mother for almost half a century that it is inevitable. Well duh! We’re all going to die. Truth is she’s beaten the odds, and as badly as it sounds, I have given up waiting for her to die. I won’t spend my time worrying about what might or might not happen today, tomorrow, or years from now. We all have to go on with life as best we can and deal with the bad points when they arise. Everyone should live today as though it might be their last, that’s what growing up with a cystic parent has done to me.
I think what most cystics would like to know is whether or not they should have children. My suggestion is yes. If you are physically able to do so, then do. If you have love that you can give to a child, then do so. With recent breakthroughs in identifying the CF gene and other advances, cystics can live long and productive lives. If that isn’t enough to convince you, just look at my mother for an example. She’s lived almost fifty years and acts as though she has another fifty left in her. She has raised two boys into adulthood and now has four grandchildren who love her to death. She volunteers at the local hospital every week and walks daily when the weather permits. Had she chosen not to have children, then that would be the tragedy, not her having CF, not me having a CF mother. She loves life. I love life.
That’s a lot of life and a lot of love. That’s the reality of growing up with a cystic parent.
If things go according to nature and it comes to be that Mom passes on before my time is up, I am sure that her frequent words of wisdom will hold true. “Someday you’ll miss this old fart!”
Barry Bennett is a twenty-four year old senior student at Acadia University. His mother Paulette Bennett lives in Lunenburg County, Nova Scotia.