I’ve just finished reading the book Walking Taylor Home. It’s the type of book that I would have devoured in a few days, before Leah’s illness and death took it’s toll on me.
Now it’s taken me a few weeks to read, due to a combination of poor concentration and me needing to stop regularly to cry and give myself an emotional break.
It is however a very heartwarming true story and I feel the richer for having read it.
There are some parallels to our own journey and many differences.
Brian, the author, is the dad of a pre-teen son Taylor who was diagnosed with cancer. Brian chronicles their journey via detailed, heart wrenching but also witty, email updates that he sends out to praying friends. These later become the basis for this book.
Initially Taylor has chemotherapy and surgery and everything is looking good. However his cancer soon returns with a vengeance. Difficult conversations have to be had and tough decisions have to be made.
Eventually Brian has to have the conversation that no parent ever wants to have with their child – the one where you prepare them for the possibility of their own death.
Last week I had coffee with the doctor who, on the 28th December ’13 admitted Leah to ICU in Belfast City Hospital and then took me into a room to tell me that my daughter was possibly going to die.
Less than 36 hours previous to this I had a daughter who was very excited about going to her first big family party since her bone marrow transplant. Suddenly she and I were faced with discussing the possibility of her death.
I had never rehearsed this moment, I had no preplanned script. I had always thought that there would be more time.
If living with cancer feels like being on a roller coaster, Leah’s bone marrow transplant felt, at times, like one very nasty game of snakes and ladders.
The transplant process itself was like climbing a very steep ladder. Then, at the end of August ’13 Leah progressed to being transferred out of the transplant unit in Bristol Children’s Hospital to their beautiful state of the art, purpose built Adolescent Unit. All of Leah’s blood results were going in the right direction. We were ecstatic. We thought we only had to roll a six and we would be home.
However the next roll of the dice landed us on the nasty snake of graft vs host disease.
Steroids along with some other meds (MMF & methotrexate) brought her GVHD under control, so we climbed another ladder – eager to roll the numbers that would take us home. Instead we rolled again and landed on another snake – Leah developed haemorrhagic cystitis caused by BK polyoma virus and was back in the transplant unit.
This snake was particularly venomous, but eventually we got out of hospital and were told that we could book our flights back home to Ireland. Within days, the next roll of the dice caused us to once again step on a snake, resulting in yet another readmission to the transplant unit.
Oh how I hated this cosmic game of snakes and ladders. Thankfully soon after that we did make it back to Ireland. We got approximately six weeks at home before the final roll of the dice landed us on the biggest and most venomous snake to date – pneumonitis or idiopathic pneumonia syndrome.
I wanted to be emotionally available to my daughter in ICU and I needed to stay strong at all times, so I couldn’t allow myself to process the emotions produced by any of this while it was all still happening.
I was really looking forward to meeting up with this doctor last week, as he showed us so much kindness and compassion during our two and a half week stay in ICU. I enjoyed my rendezvous with him and we had a good chat.
However, meeting up with this lovely doctor also reconnected me with the shock that I had experienced, but suppressed, when the 36 hours between Friday morning and Saturday evening, brought about the dramatic transition from happily discussing the impending family party with Leah, to sadly discussing the possibility of her impending death.
This triggered a huge wave of grief last weekend.
I don’t however have any regrets about meeting up with this doctor. I’m very grateful to the members of staff who cared for Leah and who have since made time to meet me for coffee. This helps me to process my thoughts and contributes towards my healing.
In the book “Walking Taylor Home” Brian does not shy away from the difficult spiritual questions such as the issue of “healing”.
At all times he allows that God can and does heal, but asserts that God is not like the genie in the lamp, dishing out healing based on enough people rubbing the lamp in the right way.
Brian is very honest about his spiritual struggles as the parent of a dying child. There was so much that I could relate to, even though I had to take regular emotional breaks.
For me it wasn’t a depressing book. It was dreadfully sad yes, but Taylor’s beautiful personality and the incredible bond between father and child was so touching.
I suppose that what I liked and what comforted me – through my tears – was that Brian, like me, recognised that part of being a parent was to lovingly prepare his child for death and then let him go, into the waiting arms of a loving Heavenly Father.