Life is just a bowl of cherries?
"Life is just a bowl of cherries" is a wonderful concept but a reality experienced by few. Not many of us are able to take the demanding journey through life without having to confront the inevitable ups and downs.
Occasionally fate will take a very cruel twist and never more so than when a child is afflicted with a craniofacial condition. The demoralising realisation by the parents and other family members of the ordeals and challenges that lie ahead for the child can be excruciating. Equally, the pain and torment experienced by the child will seem intolerable.
We, as a family, live daily all of the above emotions through the experience of our granddaughter, Erin, 4 years old, who has Crouzon’s Syndrome. Erin has undergone almost all the medical procedures associated with her condition, e.g. two vault expansions, a mid-facial distraction, tracheotomy, gastrostomy, surgery for a twisted and blocked bowel, frequent MLB procedures, sleep studies, hearing aids and glasses. In spite of her adversity, Erin remains a cheerful and lively little girl and we revere her for her fortitude, good spirit and cheekiness that seem to guide her through all the trying times.
During the early months of Erin’s life her future seemed very bleak. Coming to terms with the implication of Crouzon’s Syndrome was a long and slow process for all the family. The constant anxiety and frequent visits to hospital, both local and Great Ormond Street, drains the stamina and resolve of parents and severely tests their ability to cope in a crisis. A further complication is how the situation impinges upon brothers and sisters. Erin has a brother, Kyle, who is now 7 years old and, inevitably, there have been occasions when he has had to very much take a back seat when Mum and Dad have been occupied with Erin. To his credit, Kyle has done so willingly and gladly knowing that it is in Erin’s best interests. Kyle loves his sister and dreads the occasions she has to go into hospital. It has been at times when our spirits have been at their lowest that we have been thankful to have had the warm and comforting arm of the "Headlines Family" around us and the thoughts and prayers of our friends at All Saints, St. Philip and St. Stephen.
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Anyway, 2006 has seen an upturn in fortunes, (keeping everything crossed - who knows what lies ahead). Although starting rather grimly by the necessity of a second vault expansion in February, Erin has made good progress and has begun to astound many people close to her by her determination and resolve. She had been asked to be a bridesmaid at a wedding in April and I think it is fair to say that Erin’s mum, Amanda, had huge reservations about Erin’s ability to fulfil the role both physically and emotionally. However, come the day of the wedding we were all at All Saints Church in Maidstone and we were delighted to see Erin looking radiant in her bridesmaid dress and carrying out her duties faultlessly. Weddings are all about brides and bridegrooms but in many people’s eyes there was only one star in church that day. The next major milestone, September 2006, is Erin’s entry into mainstream infant school, a feat that her parents and the rest of the family are exceedingly proud of. It has not been a straightforward process as the inevitable bureaucratic hurdles have had to be dealt with but, dealt with they were, by persistence and pure doggedness on the part of Mum and Dad. Erin has negotiated pre-school confidently with the help of a delightful and competent lady carer on hand in the event of any tracheotomy mishaps and to aid communication. Fortunately, this lady will be moving on to the infant school with Erin which pleases us greatly as this will ensure continuity. |
We realise that there will be many reversals of fortune ahead and it will not be easy for Erin in the hurly-burly of school life as she becomes more and more aware of her own predicament. However, I just feel that the spirit and determination that she displays coupled with the love and support from all those close to her will see her lead a productive and fulfilling school life.
Perhaps "life is just a bowl of cherries" after all.
Jeff Foxley.
