20 September 2017

Closer in the tough times

A mother shares her struggle, heartache and absolute surrender as her daughter, a cystic fibrosis sufferer, faces the decision to undergo a double lung transplant. See how God is the Ultimate Provider, Carer, Comforter and Sustainer.

In a leading medical journal the results of a survey of over 1,000 doctors were published. 85% said that spirituality has a positive effect on health with similarly high percentages saying that faith helped people cope with their illness and helped them think in a positive way.

When I read this I was instantly reminded of a time almost 5 years ago now. It was the early hours of the morning and my daughter and I were in her hospital room. The lung transplant co-ordinator and the consultant had just given her the news that the donor’s set of lungs were compatible and they had asked her if she wanted to go ahead with the double lung transplant. At 17 years old and with all the trauma she had already been through from living with her illness over the years, she asked a very matter of fact question. “What are your success rates on the operating table?” They explained the risks, particularly with such a serious operation like a double lung transplant.

Then she turned to me and said, “Mum, I could die on the operating table.” Before I tell you what I replied, I have to explain some background we had lived through to get us to this point. She had been in 24 hour care for the previous 12 months, in hospital sometimes, cared for by the medical team and at home sometimes, cared for by me. So often during those days she almost died. She had been born with Cystic Fibrosis and I had nursed her since she was born. I knew when things were manageable with her health and I knew when we needed the intervention of the medical team at the hospital. Things had not been good for a while. She was slipping away fast. I knew this operation was her only chance. We had been waiting for the lungs for the previous twelve months and because of her size and other factors, it was looking unlikely that she would ever get the lungs she needed to give her a second chance at life. I had a huge sense of calm on the evening we were called over to England for the transplant. This was her moment, the lungs would be suitable and things would work out. Also God had been working in our lives prior to this to deepen our trust in Him for the outcome. So when she looked to me for imput into this huge decision she was about to make, I knew that with time running out all I could do was to reply honestly, gently and as lovingly as possible, “If you don’t take these lungs you could die anyway.”

I think I shocked the Consultant and later he said to me, “Are you spiritual?” He thought it was a very strong thing for a mother to be able to say to her daughter at a time like that, but there was no time to sugar-coat the answer. The truth was that that night when she was called for transplant, she only had a month left to live. If she had said no to the operation she would have died shortly after and I knew in my heart that was the reality we were dealing with. I was also aware of God giving us the strength to face our daily challenges.

My prayers for my daughter and my son when they were diagnosed with Cystic Fibrosis shortly after birth had always been for their healing.

As the illness progressed and we went through the wilderness time when my daughter’s health deteriorated I fasted, prayed and cried out to God regularly. I reasoned with Him that it could not be for His glory that she would suffer so much or that she would die. I declared Bible promises over her health and declared that He was so powerful and if He would just say the words she would be healed. He had healed people in Bible times, was still the same God and could heal today.

There is no denying that God was at work in our lives providing for us, looking after us, caring for us, comforting us through the awfulness. He raised up an army of people to carry us through the situation in prayer. My eyes were opened to the different types of healing that God brings about…a healing when some aspect of an illness is discovered and there is medication to help with the symptoms; a healing of attitude that brings acceptance for what a person is going through; subtle healings that happen over many years and it is only in looking back that the person can see how far they have come, and healings from fear.

My prayers changed over time because when you pray for something for so long and the answer doesn’t come you begin to wonder if the answer is going to be different to what you wanted or hoped for. The other healing that was like a nagging thought in the back of my mind was the complete healing that comes with death. I often imagined her healed and happy in Heaven with her loving Heavenly Father.

Since my children were little I had always prepared them for wherever we were going so they would know what to expect when we got there. I didn’t know enough about Heaven to tell my daughter so I asked God the questions like, how would she get there? What would it be like? She was too young to know anyone who had gone ahead so would she be lonely without her brother and I? She had said she wasn’t ready to leave us but would she be aware she had left us behind? Very soon after this a friend gave me a book called ‘90 minutes in Heaven’ by Don Piper. Don died in a car accident and for 90 minutes he went to Heaven. When his friend followed God’s leading and got into the back of the car and prayed with Don, he came back to life. I know there are some who would be sceptical about a story like this but it brought me comfort at that time and I saw it as being from God. He knew my heart was broken with all that we were going through and that I really needed the comfort of His answers.

The descriptions of Heaven were amazing. One minute Don was in the car, the next he was in Heaven. A crowd of people were there to greet him and the ones nearest to the front of the crowd were those who had been most helpful to him in his Christian walk. He had an amazing feeling of being loved like nothing he had experienced on earth. All the colours he saw were vivid and brighter than he had ever seen. There was music, like old hymns and worship songs blending together in harmony.

As I soaked up the words of these chapters, a huge sense of comfort came over me, released me from any fear of death and this encouraged me to be able to trust God completely for the outcome knowing that if the worst happened and my daughter died, we would still see her again one day in Heaven. I was able to hand over the outcome to God and to say that whatever happened I knew I could trust His wisdom for the right decision. What I only discovered later was that God was working in a similar way in my daughter’s life and she had also handed over the outcome of her health to Him.

Thankfully, the double lung transplant was a success and restored quality of life to her. It was not a total healing as some believe because she still has aspects of her Cystic Fibrosis plus some added complications brought on by the medication for post transplant care. In the months after her transplant we had a lot of readjustment to do within the family unit. We had become used to living with trauma and now we had to readjust to a more normal family life. Often during that time those descriptions of Heaven continued to bring me much peace and comfort.

With God no experience is ever wasted. Lessons I learned during those difficult days continue to help me to identify with others who are going through similar things. The comforting words I read about Heaven I have often passed on to others who need that comfort too. We have shared our story with many who describe it as inspiring and we have also written a book about our experiences which has been helpful to many parents and also to those in the medical and research professions.

Helen Little

If you would like to know more about our book ‘Living Life on a Rollercoaster’ please visit www.cysticfibrosis.ie