My daughter Sarah died on April 2 1996, aged 10.
How can you do justice to such a beautiful, happy, vivacious and intelligent little girl in just a few hundred words? How can you capture her joy for life, her love and understanding of people and her courage in just a page?
Our daughter died of respiratory failure due to the genetic disease cystic fibrosis. A lot of positive press coverage about this insidious disease has ignored its unpredictability. Sarah had 8 years of good health which gave us every reason to expect her to live at least into her twenties. Although she was well during that time, her treatment was extremely time consuming as cystic fibrosis is a very high maintenance illness.
In 1993 she had three admissions to hospital totaling about 8 weeks. We found she had a severe allergy to Aspergillous, a fungus many CFs get in their lungs, and an antibiotic resistant bacteria called Pseudomonas Cepacia. But she improved and 1994 was a good year. She had excellent lung function, played basketball, swam, walked her dog and excelled at school.
Our world fell apart in 1995. She spent a total of 17 weeks in hospital that year and each visit saw her a little worse than the previous one. She contracted Hepatitis A, and was terribly ill. She rarely complained. She developed insulin dependant diabetes, requiring insulin injections and lots of blood tests. She never complained. Her lung function over the year went from 130% to 30% so that even walking was hard work. She never complained. She needed oxygen to help her breathe at the end of the year. She never complained. Although she was blunt to doctors and nurses who patronised or didn't listen to her, she was delightful, mischievous and adorable to all adults who treated her with respect.
She came good enough to spend 6 weeks out of hospital over December and January 1996, then she was back in again. This time she needed even more oxygen and vomited every time she coughed, walked or ate. She had to be fed intravenously. With insulin and antibiotics she was sometimes connected to five drips. She still managed to crack jokes. Every day breathing was getting harder for her, especially in the mornings. The only thing she said was "Is it afternoon yet?" and she would wait the morning out patiently because she knew she felt better in the afternoon. In the afternoon she was the old Sarah, vibrant, loveable, affectionate, cheeky.
Her Uncle Ken said it all when he wrote "If age was measured in courage instead of years, Sarah would have been immortal."
She was a highly intelligent child who read newspapers and periodicals like the Readers Digest. She knew the signs of advancing lung disease, and just two days before she died she told her father that if he really loved her he would let her die.
She was given morphine, and we thank God that it was available to her. She felt peaceful and comfortable. She talked, joked, sang and made out her last will. Her brothers were there and held her hand. She enjoyed having them make a fuss of her. She was an inspiration to the end and she died peacefully, surrounded by her family , beloved nurses and favourite doctors.
We are grateful to God for giving us such a wonderful, special child. We always thought we couldn't love our three children any more than we did. Words simply can't describe the love you find for a dying child and this seems to intensify the feelings you have for your other children.
Whilst we are left with indescribable feelings of grief and pain we are also left with wonderful memories of a precious daughter, and a much stronger and loving family.
Jean Cleaver
