AN ANGEL NAMED ALISON

Graham Hellams

I read recently the article by Teresa Pirola in the Jan/Feb 2004 copy of Madonna about a young man named Jordan, who has severe disabilities, and the effect he has on those around him. I was struck especially by the words ‘[Society] is bent on making sure that the Jordans of the world don’t come to birth’.

As a father of a severely, multiply-disabled child, these words struck a chord. As I pondered the above words I decided to put down my thoughts on what my daughter means to me and my family. One question is asked frequently. ‘Why me? Why should this happen to me?’ My answer is, ‘Why not? What is so special about me and my family that this should not happen to me?’ I do not have an answer to that question.

My daughter, Alison, is 27 years old. She suffers from cerebral dysgenesis of unknown cause. She also suffers from epilepsy. She looks about 12-13 years old. She walks short distances with an ungainly gait. She cannot talk–but can vocalise–and she is completely dependent on us for all her needs–feeding, clothing, toileting, washing. Basically we have a 47 kilogram baby and her parents, two sisters and a brother love her to pieces.

It is not easy, physically or mentally or emotionally, to look after such a child. The draining effect can be terrible at times. On at least five occasions, mainly in her early years, Alison has stopped breathing in a seizure. Only the efforts of doctors and ambulance crews have kept her alive–the longest being an hour and twenty minutes. It may happen again; we have no way of knowing. On many occasions, Alison decides she is not going to eat anything. This may go on weeks at a time. Fortunately she drinks during these times, and thank God for Vitalize and Sustagen!

What sort of child is she? She is one of God’s loveliest creatures (a completely unbiased opinion of course!). From the start she has received nothing but love from all members of her family and she has responded with a love of her own which takes no notice of what one looks like or one’s station in life.

She has the most beautiful smile that is absolutely winning. She loves to hug her family members. She loves swimming and music plus horse riding. She is part of the ‘Moving On’ program, funded by the state government, and the two organisations that look after her on this program, Centacare and Community Bridging Services, do a magnificent job.

‘How do you cope?’ is an often asked question. As a believing Catholic, my view of Alison and her situation is probably a lot different from that of many others.

I see Alison as a child of God, destined to be with him for all eternity. That’s why she was created. God does not stipulate physical and mental perfection as a condition of salvation. Her disabilities really mean nothing, though this perspective is very hard to maintain sometimes. When Alison and I ‘say’ her prayers at night, I thank God for the privilege and honour of looking after this special child.

When she dies, she is going straight to the Main Event and will not be hanging around in the foyer. If that’s not fair, I don’t know what is! If God calls Alison before us, her parents, our family will have two angels grateful to us and praying for us as she joins her older sister, Elizabeth, who died of cot death thirty years ago. That’s pretty good, I reckon.

Alison, by her very existence, helps one to keep some realistic view on life. How many parents can say that they have a child who does not know the meaning of hatred, anger, envy, jealousy, meanness, dishonesty and pride? A child that will not fall to the allure of drugs and alcohol? A child that only knows how to love–without favour? I have such a child and what a ‘quality of life’ she has.

Despite the heartaches we have had in the past and will have in the future, when that little girl opens her arms for a hug, with a huge smile on her face, how can I not thank God for such an angel, named Alison?