From a Record of Needs to a Record of Deeds
Here I am again kind of breaking my rules by mentioning in my blog a pastoral situation. I hope when you read this you will agree with me that it is sometimes important to even break your own homemade rules in order to give honour where honour is due.
After watching a programme on SKY about the model Jordan and her 10 year old son Harvey who has a profound disability and hearing how Frankie Boyle the well know comedian had used Jordan's autistic child as material for rude and tasteless joke, and continues to refuse to apologise. I thought it is important that our society becomes more aware of the contribution that children with special needs make to their families and also to the communities they grow up in if they are allowed to do so.
I decided to write about Nicole Napier a young 19 year old girl who had special needs and who passed away last week. I had the great honour of conducting her funeral service on Wednesday afternoon in St Andrew's Bo'ness.
When I met with her parents they immediately made it plain that Nicole was never viewed as a project she was in her parents words a gift given to them. I was touched and humbled by their stories. Nicole being survived by her twin sister and her older brother was never short of companionship. I realised that this whole family had been shaped by this tenacious young woman. Together they have made up an awesome team working for over 19 years to support and love Nicole.
Nicole was diagnosed as having quadriplegic cerebral Palsy when she was a young child. Talking with David and Elaine they explained that while the medical support put a name on Nicole condition from Nicole's point of view a disability was only in the eye of the beholder. Nicole never thought she was disabled. Being quadriplegic meant that there were many things that Nicole couldn't do for herself but she developed to the full the things she could do. Although she was partially blind she learned to recognize shapes and people and she had a magnificent senses of presence and she had outstanding hearing. She loved to be at the centre of things and to hear all that was going on. Nicole liked the chatter of voices and she especially liked the lower tones that came from mens voices. Oh yes she had a few boyfriends.
When Nicole was 5 she went to Westerlee School in Edinburgh. At westerlee she gained in confidence and enjoyed exploring a new space and meeting different people. She liked being in the zone of her school, and it was there that she learned how to work switches with her head. This introduced her to the freedom of choosing when she wanted to listen to music or switch it off. It also allowed her to get involved with baking and also to listen to stories and engage with story time along with others.
Westerlee was a small unit that had a great atmosphere. It was during this period she experienced horse riding and ice skating.
When she was 10 she moved to the Royal School for the blind. Here she enjoyed her trips to the swimming pool and the multi sensory space. Much of what she learned in her primary education was re-enforced during her period at the Royal school for the blind. In recent times Nicole became a regular attender at the Care unit in Falkirk for over 18s. She simply adored the unit and the people who run it.
When Nicole returned from the unit home for her was a place to chill out. She loved to be around her family to be with Diane her twin sister as she played Lady Gagga or to be with her brother David when he took her out in the fresh air for a walk in the wheel chair. Nicole contributed so much to the life and home of Elaine and David. Her smile could turn a bad day for her father into a worthwhile experience. She enjoyed her trips out in the van with Dad. She and her Mum could communicate with a twitch of the face or the touch of a hand. Her family meant so much to her. Kaila the dog would lick her feet and she'd smile at the experience.
When she became poorly the support and help at Rachel House was a wonderful blessing and the nursing and care was of the highest standard. Parting is never easy but Rachel House has helped greatly in accompanying David and Elaine and Diane and David on this life journey. Faith has also played a strategic part in helping see that life goes beyond time into eternity.
Sitting with the family last Sunday they were not bitter and resentful about this life experience of caring for a child with special needs. Nicole for them was a gift - a wonderful precious daughter who taught each member of their family how to love more and how to serve more and how to smile and laugh and be so thankful for life. Today they are diminished by the passing of Nicole. However they are also full of expectation and hope for Nicole. You see they believe death for Nicole is like a graduation ceremony a great new stage of development in her future.
Now she is able to be the person who can fulfill more of her identity because she is freed from the constraints of a body limited by movement and time. Today Nicole looks and sees our limitations. Today she knows as she is known. There abides three great experiences that are eternal - Faith Hope and Love and the greatest of these is Love.
The sun was shining in the cemetery it was a wonderful warm day. At the end of the service the words of the funeral liturgy rang out as I spoke the words from Revelation " And I heard a great voice out of heaven say write this happy are the dead who die in the Lord, for they rest from all their labours and they carry with them the record of their deeds." I smiled for I could see Nicole walking into the presence of the Almighty no longer carrying a Record of Needs but carrying with her The Record of her Deeds. The gift she had become to so many people was the gift of a change of heart and a change of attitude.
Posted By: Margaret Young On: 11 Jul 2011 At: 6:32pm
Albert, you have the courage of your convictions to write about the distastefullness of the comedian Frankie Boyle. You are also correct in highlighting Nicole’s amazing story, for in your years of ministry you have encountered many situations so when an occasion such as the life and death of Nicole occurs, it deserves your ‘blog’ space.