‘A real Shirley Temple with her mass of curls’
Unfortunately, my girls cannot voice their opinions, and how I wish they could. I can tell you from my point of view, that we had very little palliative care support at the end of Lynn’s life.
Laura aged four, died very quickly and peacefully, after the final surgery to repair a hole in her heart having previously spent seven months of the first year of life in Our Lady’s Hospital for Sick Children, Crumlin and gone through three previous surgeries. She was always a very happy, funny, beautiful girl. A real Shirley Temple with her mass of curls, she always had a smile and made us all laugh so much – she was so cute and so brave.
On the day of her surgery, Lynn aged 13 at the time and never sick in her life, was diagnosed with leukemia. Laura died the following day never having woken up and Lynn was already a patient in Oncology at Our Lady’s Hospital. After eight months of chemo etc., she was in remission for about five months, before she re-relapsed. The treatment then was heading towards a Bone marrow transplant and pretty tough at that. Shortly before the transplant was due to take place, unfortunately Lynn relapsed, and there was nothing else that could be done. She had courage and acceptance beyond her tender years of 15 and we had a wonderful three weeks to her death. She was physically able to do a lot in the first two weeks and family and friends planned many wonderful things for us, including a trip to Manchester to see Westlife and a wonderful trip to Dromoland Castle for her ‘Make a Wish’.
In her last week she wrote letters to all who had been so wonderful to her, including her doctors; saw friends; said her ‘goodbyes’; arranged her funeral and wrote her will. When she was too weak to write, I did it for her, but she dictated. I had closeness with her that I might never otherwise have had and we shared some beautiful, special moments in those last weeks. She wrote the beautiful ‘Lynn’s Dreams’ poem just twelve days before she died. The two angels she speaks about are her darling beloved little sister, Laura, and her ‘cousin’ not blood related, but the daughter of my best friend Lorraine, who had lost her life to leukemia on her 22nd birthday, just ten weeks after our darling Laura. Although Lynn was nine years younger than Lorraine, she adored her and was very close to her.
How she coped with her illness, her adored sister’s sad death and her impending death is an inspiration to us – she wished it could be different, but accepted it with such dignity, aged just 15. She lived every minute of those weeks to the full, which is how we should all live our lives. She truly taught us how to live and how to die.
Lynn’s greatest wish was to die peacefully at home. While she was grateful to all at Our Lady’s for all they did for her and Laura, she did not want to die there. We had a limited amount of support form an adult hospice at the end of Lynn’s life but thankfully she had a very peaceful journey to the end and our own wonderful GP made sure he controlled the pain she did have on the last day of her life.
It was our girls’ deaths which set me on the road to setting up LauraLynn House, Ireland’s first children’s hospice. I know Laura and Lynn are very happy that something so good has finally come to pass and that many sick children and families will now receive the care, comfort and respite that children’s hospice brings, especially the wonderful care at the all too sad end-of- life. So, I guess my message that I’m sure my angels would agree with, is that the care, comfort, respite support and most of all, choice which children’s palliative care brings is so very wonderful. And I think children and young people are not given the credit for how amazingly they deal with dying, for the most part. It is we adults who find it much more difficult to deal with.
I wish I could learn,
like everyone else.
I wish I could swim, jump and run,
I wish it could be like old fun.
I wish I could grow and learn about life,
I wish I could feel well again.
I wish that there was an end to the strife,
And a new beginning instead.
But destiny’s come and it’s drawing me near,
And I know my two ANGELS are there.
With them I will have no reason for fear,
In their warm embrace and their care.
If you would like to share ‘Lynn’s Dream’ you can purchase a bookmark for a member of your family or a friend here