What I know about raising a disabled daughter

Peter Kirsop

  “Happy families are all alike; every unhappy family is unhappy in its own way”

  The opening sentence of Anna Karenina could easily be modified to fit families in which there is a disabled child, for each disability is different and each child with a disability is born in a different context, it makes a huge difference whether the child with a disability is the first born, the only child or as in my case the youngest of three whose elder brothers are healthy and active.

  So in a sense this is what I don’t know about being the father of a disabled child because each family is so different. Those interested in our personal family history can see this on the introduction thread here. But I do know that for all those parents I know it means:

"¢ Great and often unwelcome changes (for example we moved from Cooma to Maitland to be nearer major hospitals and so our Sophie could go to a special school and to early intervention );

"¢ A lot of unpleasant work (like changing nappies on an adult child or washing or at least wiping the floor after your child has eaten each meal because she has spilt a lot on it) which is also quite literally backbreaking- every day I have to help Sophie who weighs in at 30 kg out of the bath (she can get in it without help) onto the toilet (in the hope that she might still learn to use it) and sometimes because she is often unwell (perhaps she has had a seizure that day) I have to carry her some distance;

"¢ Grief, for all too often a child whose parents you know and who attended the school with your own dies (two who went to Sophie’s school have died in the last 18 months- there are about 45 children there) or a family breaks up under the strain. One such the family of one of the two children who have since died; the father was a tradesman in the airforce and the family lived in a DFH area a short walk from our house, such good people, the father a Scout leader, the mother active in the P&C with another lovely daughter as well as the one that was disabled.I watched as first the disabled one seemed to improve, she learned to write, she looked as if she was going to be able to go to a normal school, then whatever her disability was returned and she was being fed by a tube. Confused and bewildered her mother without much support here (We all did our poor best) returned with her daughters to Queensland where her family was the statistics are against us.something like 70% of families with a seriously disabled child break up;

"¢ Worry, which doesn’t help the marriage relationship.you worry about your child’s health, about who will care for your child when you can’t anymore (And I know people in their 70s still caring for their child) or whether your child will die early, what will happen when they reach puberty (will I still be able to wash her- what will DHA&CS say?) and if you have other children then you worry about whether you are treating them right and about the sacrifices they have to make because of your disabled one;

"¢ Isolation because each disability is (thankfully) fairly rare so for example there are no children with our daughters problems in Maitland, the nearest is in the southern suburbs of Newcastle;

"¢ Countless trips to hospitals, (in her first year of life Sophie was in hospital in either Sydney or Canberra 12 times) specialists of varying types (Sophie sees 4 with varying degrees of frequency -less often now then before) and therapists;

"¢ Being misunderstood by people who mean well but just don’t know what you’re trying to do;

"¢ Being complimented on the progress your child is making when you know she is falling further behind the “normal” child with each passing year. Those who say it also mean well and mean what they say and in a way its true of many children they can walk, they can sign they can do many more things then they did a year ago but they cant talk, cant eat by themselves and it makes you so angry that people will say such things yet you cant bite back for you know they mean well;

"¢ Being told you must be special people to have such a child. If changing nappies on a 10 year old makes you special .give me ordinary any time.

  And yet Sophie and most children in her school are so affectionate, so loving. They want cuddles and hugs from everyone. Most cannot talk (Sophie is one who can't) but they come up to you with arms outstretched for affection.

  And yet some people are amazingly generous
"¢ with their time, like the volunteers who each month organise “Saturday fun Club” which minds the disabled kids from 10 to 4 and lets us do something else
"¢ with their money like the local Rotary clubs which (with the help of Starlight Foundation) raised $120,000 for a bus for the special school in the area and like one couple who put on a function at their place as part of this bus appeal which raised $5000
"¢ with their talents like one lady who put together a resource book for parents of disabled people drawing on various peoples expertise to come up with a very useful reference.

  But yet for someone who tries to be Christian its another hurdle. Why did God permit this? Why does he allow so much innocent suffering? Why doesn’t he intervene to stop this? Why doesn’t he answer my prayer to heal Sophie " or for that matter other people’s prayers to heal their children? Why is she dumb? Incontinent? Why can’t she walk properly? Why is anything so simple as getting her haircut an exercise which takes a while to plan and requires a survival kit that takes 5 minutes to get ready.

  It gets very hard after 10 years to keep waiting on God. Yes I see some progress. Sophie can walk and sign but so little and the night I started to edit this article she fouled the bath and cleaning pooh out of a bath is not a nice job and then to have to wash her all over again.

  Yes God has a perfect plan and yes I am strengthened by suffering ...but what is the plan and would you please show it to me before my life collapses? Before my marriage fails. Statistically almost 70% of marriages where there’s a disabled child do end in divorce.

  Please don’t get out your theological texts and bombard me with answers. I have probably heard them all. Perhaps the answer is the answer Job got " there really isn’t one in this life or as St Paul said, “If in this life only we have hope then we are of all men most miserable.” (1 Cor 15:17)

Perhaps St Peter said it best when asked by Christ, “Will you also go away?” (John 6 67f) He replied “Lord to whom shall we go? You have the words of eternal life,” for they are His or no one’s and to be found nowhere.