Amanda Turkiewicz

Living With CF; A Caregiver Role

Dean told me that he had ‘cystic fibrosis’ in 1991.  According to him, this simply meant going to Toronto once a year with his brother (who also has CF) for a check up and, oh yes, he probably couldn’t have kids.  Given that we weren’t even dating at the time, none of this seemed particularly significant to me.

In 1998, just after we announced our engagement, we learned that Dean’s brother needed a double lung transplant.  Although I had learned a lot about CF through my volunteer activities, I still was not prepared for the realities of CF to hit so close to home.  We considered moving our wedding date ahead, but there were no guarantees either way.  We left ourselves five months in the hopes that things would settle down.  Dean said that he wanted to give me time to be sure I still wanted to marry him because one day it would be him needing the transplant and he’d understand if the stress was too much for me.  Dean’s brother was five years older than him, so I was hoping to have five years of marriage before Dean needed a transplant.  Most engaged couples look forward to growing old together – I was considering myself blessed if I could have just five years, anything more would be a definite bonus!

Although we knew the odds were stacked against us, we were still shell-shocked to learn, early in our marriage, that we could not conceive.  When Dean’s brother was transplanted in 2000, followed a month later by a very dear friend, I couldn’t share my fears and anxieties with those around me – they wouldn’t understand.  Even our closest friends and some family did not know that Dean has CF.  The stress was too much for me and I would break down at the most inopportune moments!  A friend eventually asked what was wrong.  I had to share my feelings with someone other than Dean.  I didn’t want Dean to feel responsible for my worries. 

While I don’t have CF, I certainly live with it every day. The challenges of being married to someone with CF are many – infertility, disease progression, inability to qualify for life and medical insurance, financial pressures, incorporating treatments into daily schedules, taking time off for clinic visits, appointments with specialists, etc.  I have also been faced with some very insensitive comments such as “Why would you marry someone who is sick?”, “If you don’t have kids, your marriage isn’t complete.”, and “You wouldn’t know, but having kids is very stressful on a marriage.” (newsflash:  so is learning that you can’t conceive).

We all have our crosses to bear and I try to bear mine as cheerfully as I can.  I have learned, and relearned, that God does not give us challenges without also giving us the graces to deal with them.  What a valuable life lesson.  I pray daily for God’s graces to be showered on me so that I can look at the challenges that come my way as opportunities to learn and grow.  Living with CF, and all that it encompasses, has given me a greater appreciation of even the little things in life.  Dean turns 50 in 2013 and we will be celebrating 15 years of marriage… still no transplant on the horizon!  Praise God!

Leila Cruikshank