Living life on a rollercoaster
by Helen Little
“This may be the last time I see you”. These words were said to me by my 17 year old daughter who had just been called for her double lung transplant. Although my heart was breaking, I opened my mouth and the God given words came tumbling out.
“You will never NOT see me again because you and me and Luke are spending eternity together. So even if you die in the operation (and you won’t because this is your chance) you will see us again. For you it will be like the twinkling of an eye”.
I know at that moment those reassuring words were God-given because later when I had the time to think about it my heart ached at the thought that she could have died.
At that time we had been living with Cystic Fibrosis for 17 years as both my son and daughter were born with it. Cystic Fibrosis is a life threatening illness that mainly affects lungs and digestion. The body makes extra mucus that clogs up the lungs so the patient needs daily physiotherapy and medications. The mucus also blocks up the digestive system so enzymes have to be taken with all food containing fat to help digest it.
At the beginning of our journey I would say that my faith was more simple and untested. I believed that God was with us each step of the way and sensed His strength and provision as we faced the daily challenges.
At the beginning of our journey my faith was simple and untested
Years ago the life span of patients with CF would have been the teenage years but with the advances in medication and treatments they now live into their thirties and beyond. CF can often affect girls more severely than boys and this was true in our family’s experience. While Luke’s health was reasonable, in Emma’s early teenage years her health deteriorated to the point where she needed a transplant.
One month to live
The whole year before this major operation she was critically ill and by the time she got the call she only had a month left to live. That whole year was the toughest wilderness experience and going through it I learnt that the wilderness is bitter sweet. None of us would willingly choose to go through wilderness experiences but we learn things from these tough times that we would not otherwise learn.
My faith in God helped me through those days, weeks and months in a way that I could not have faced the awfulness without Him. He gave me strength to face the physical demands of 24 hour care knowing that there were priorities we had to do each day and the other things which belonged to more normal times would have to wait. My questions about what Heaven is like were answered in a way that brought me comfort knowing that is ahead for those who know and love God.
I became aware of the different types of healing such a complete physical healing, partial healing of an illness that can be treated with medication, partial healing with the diagnosis of a condition that was already there but can now be treated instead of deteriorating, healing for those who love God when they die and go to Heaven, healing when an illness goes into remission and subtle healing that takes place over many years and it’s only in looking back that this healing can be appreciated.
God placed people in our lives who constantly went the extra mile to help or encourage.
I sensed God given wisdom when needing to answer or ask direct and honest questions about Emma’s health. My faith taught me persistence in praying especially when the desired answers seem to be long in coming. I was blessed with the value of friendship and I believe God placed people in our lives who constantly went the extra mile to help or encourage.
I gained a double appreciation for good moments or out-of-the-blue experiences that enriched my life. I felt humbly taught about God’s amazing grace and love towards me particularly at times when I had doubts or questions.
One of the things that I am constantly in awe of is the way God meets people at their point of need and speaks creatively to them in a way that will impact them.
When Emma was critically ill there came a point where we knew the reality was that if the new lungs did not come soon, death was inevitable. Although we didn’t say it to each other at the time Emma and I had both come to the point of totally handing over the situation to God. Whether He chose to heal her on earth or in Heaven, we would accept that His decision was best.
Hope and a future
Emma felt that at this point she was given a verse, “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future” Jeremiah 29 vs 11. I’m glad God understands us completely because in my exhaustion I couldn’t accept this verse of hope when our reality was completely opposite. His verse to me was “Be still and know that I am God” Psalm 46 vs 10
In my exhaustion I could not accept this verse of hope when our reality was completely opposite.
It’s been great to see the working out of those verses. My verse gave me peace to face life’s challenges and since her operation Emma has been able to follow the plans for her life. The transplant wasn’t a complete healing as she still has aspects of her Cystic Fibrosis and other post transplant issues but it restored quality of life to her so she could continue living.
The book, Living Life on a Rollercoaster, is our story about living with Cystic Fibrosis from birth to one year post transplant and is on sale in the Footprints bookshops in Dun Laoghaire, Talbot Street and Cork. Or if you want to contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it for more stockists.
