4 minute read
Jennifer's Legacy
MSUK is Jennifer Greene’s legacy, during her life she supported and championed the charity established by her parents following her diagnosis of cystinosis. The Greene family have ensured that, through setting up and supporting the charity, people throughout the years have had somewhere to turn whilst navigating their journey with any rare inherited metabolic disorder. Sadly, Jennifer passed away in 2007 at the age of 28.
Jen’s family have shared their thoughts and experiences with us.
Written by Jen's Family
Jen was diagnosed with a life limiting condition at 18 months old but she passed away as an adult, so we were made aware of her prognosis when she was an infant.
However, it should be pointed out that this diagnosis was made over 40 years ago and thankfully advances in treatment and daily management of the condition, while still ongoing, have considerably improved the outlook for those diagnosed more recently.
For us, way back in 1980, the bereavement process began with Jen’s diagnosis because we knew that at some point we would be facing the actual loss, whenever it may happen.
No doubt this influences life choices in terms of family planning, career changes, moving house, future financial needs, pressure on partnership and other family members.
It probably also influenced our attitude to everyday tasks, seizing the day rather than looking too far into the future and also our relationships with relatives and friends not facing this inevitable loss.
Meanwhile we needed to ensure Jen received the best care and opportunities to thrive while not indulging her for bad behaviour or negative attitudes. In addition, we needed to be sensitive to the needs and stresses faced by her sister Beki, who often had to accept the absence of one parent on care duty and could potentially grow jealous of the extra attention being focussed on her elder sibling.
Thankfully, as they both matured, they grew closer and came to understand and acknowledge their different needs and anxieties as well as share their love of music, adventure, travel, theatre, and dance despite the six year age difference.
We had known, as Jen’s health deteriorated during her last twelve months, that this moment was coming, but its impact is huge, no matter how long it has been anticipated.
We were able to bring Beki home and drink a cup of tea together as we had always loved to do, before Jen passed away with a smile on her face. No more pain. She was free.
Afterwards there followed a period when we just wanted to be the three of us as we came to terms with this enormous shift in our lives. We respected each other's approach to dealing with our loss. There was no right or wrong way.
We had never confronted the funeral plans or the need of a will. That all felt like a betrayal of hope, so we created an order of service that we felt reflected Jen's personality, optimism, and love of different music genres.
Beki sung Amazing Grace. Robbie William's Angels played as the service began. Oh Happy Days was played at the close after a beautifully sung Irish Blessing by the gifted choir.
We are so proud that Beki returned to university to complete her course and worked hard to achieve a job where she thrives.
Our watchword is to celebrate Jen whenever we can and whenever we are together. The dark days and bad times are "put in a box". Sometimes even now they jump out unbidden but we avoid situations where we believe they might emerge.
We did find that earlier initiatives by the charity, including the Service of Celebration, the Book of Remembrance and the Galaxy tribute fund were very supportive, promoting the celebratory aspect of a life lived, not just a life lost.
The rose still blooms in our garden and her bench is passed and enjoyed, not just by us, but by residents and visitors to the town every day.
Seventeen years have passed and we miss Jen every day but equally we celebrate her life and her legacy which is a huge comfort.
These tenets of community, connection, and living well with an inherited metabolic disorder established at our conception by the Greene family back in 1981, remain at the heart of our organisation today.
