"Kevin has Lennox-Gastaut syndrome,” the epileptologist (a physician who diagnoses and treats epilepsy) told me matter-of-factly. “His latest EEG, along with your description, confirms this.”
“Lennox WHAT?” I responded.
“Lennox-Gastaut syndrome. It’s a severe form of epilepsy and it’s difficult to treat.”
I felt like screaming, “How much more does my son have to suffer? How many more times must he crash to the ground and add to his bruises?” I was in agony.
Needless to say, the diagnosis from the epileptologist was far from welcome. Later, Kevin was also diagnosed with a profound intellectual disability. Since then, my husband, Michael, our eldest son, Matthew, and I have had to learn how to live with a severely disabled child.Eight years earlier, after a lengthy medical appointment with Kevin, the paediatrician had told us that he had autism and would probably never speak or walk. The news shattered my dreams for my family into a thousand tiny pieces.
Kevin wears a helmet every day to protect his head from falls during seizures. He requires close supervision and has no concept of safety. He needs full assistance with dressing. Learning occurs in miniature steps over months of repetition.
The good news is that, after many months of intensive exercises, Kevin has learned to walk and even run short distances. After years of consistently using photographs, he understands that they inform him of where we are going, who we will see and what we will do. Kevin can follow very simple instructions such as “sit down,” “pick it up” and “in your chair.” He attends a special-needs school and we receive high levels of support that enable his ongoing care to continue at home.
Disability is something our society struggles with. Should we look at people in wheelchairs or ignore them? Should we smile at the parent struggling with an intellectually disabled child or turn away? What is the polite thing to do? What is the right thing to do? What will help the most and hurt the least?
Early in our journey with Kevin, we were blessed to have several friends with medical and educational backgrounds who understood the profound significance of Kevin’s diagnosis. As our hearts ached and as we tried to come to terms with our broken dreams, these friends provided understanding as they listened quietly while we shared our grief. It helped me to talk, to cry and to have my feelings validated.
“Losing” a child to disability brings a profound grief, one that is cyclical in nature. For me this grief is triggered at birthdays, Christmases and other milestones, such as learning to ride a bike or to read. I felt sad that Kevin wasn’t achieving these skills. I wanted more for him. Even after eight years, I still feel the loss acutely at times.
Once, after giving a presentation to a Rotary club, I was asked, “How do you cope? Do you ever feel like running off into the night and screaming? You seem so calm.” They weren’t the first to tell me that I “seem so calm.”
But they don’t see me during my most stressful moments. I’m not always calm. I have moments of irritation, anger, sadness and exhaustion. If I could change our situation, I would do so in a heartbeat. If I am calmer than others in my situation might be, it’s most certainly attributable to a strong faith in God.
The most helpful aspect of that faith is knowing that this life is not forever. A better life for all of us is ahead. In heaven, Kevin will be a prince!
Louise enjoying a day out with Kevin.
I believe God when He says He’s preparing a place for us where there will be no suffering or tears (John 14:1–3; Revelation 21:4). I often imagine that time and place. There, Kevin will be in pristine health. He’ll talk and share in our lives in far more meaningful ways than can ever be possible on earth. He’ll climb trees, play and look into Jesus’ face. There will be no more sickness, no more seizures. Strong hope in the future gives me perspective and strength for dealing with the present.
What Not To Say (And Why)
"Don't worry. We all worry about our children." That hurts, because it minimises the condition.
"He'll grow out of it." He probably won't, so be informed. Disabilities are usually lifelong conditions. It's better to say nothing than to make ill-informed comments.
"Just be glad he doesn't have..." This dismisses the very real pain a parent feels.
Don't ask, "How are you?" Unless you genuinely want to know. Sometimes, when feeling particulary fragile, I don't know how to answer this question. Should I lie and say, "I'm fine" or should I tell the truth and burst into tears yet again? At times like this I wish people would simply say," Nice to see you."
After reading my book* and another one about a family who had a child with severe autism, a friend commented that my book offered hope while the other one portrayed utter desperation. “Yours told of the difficulties but found a way through. How is that?” Again, I believe confidence in a better future makes the difference.
Faith gives me significantly more than just a promise of a better future, though. Being part of a caring, loving, Bible-based group of believers is helpful beyond measure. We meet regularly. We talk, we share and we encourage each other. We pray together; we gain insight from viewing relevant DVDs, discussing books and studying the Bible together. Their support keeps me going through the toughest times—of which there are many. Being a Christian doesn’t protect me from the tough times, but it does provide inspired help on the journey.
While others may not see the point in going to church and having a faith in God, these spiritual exercises make a difference for me. Often, when I pray and read my favourite Bible passages, I feel a deep peace that I know does not come from me. It must come from God.
Then there are times—many times—when I pray but don’t get any sense of God’s presence. That’s when I cling doggedly to the promises God makes, because I know from past experience that I can trust Him.
“The Lord your God goes with you; he will never leave you nor forsake you” (Deuteronomy 31:6). He says, “I will strengthen you and help you” (Isaiah 41:10).
During discouraging times, I repeat those promises like a mantra and I’m strengthened to keep pressing on.
Despite my life being different from what I had imagined and hoped for, I thank God that whatever else happens on this earth, He will continue to be with me. When I’m too tired and discouraged to even talk to Him, He’s reaching down to me. I simply need to remain open to His gifts.
How To Support A Family With A Disabled Child
- Learn how to appropriately care for the disabled child and offer to assist.
- Care for the children so that their parents can catch up on sleep; have "couple time"; attend conferences, workshops or training together; or have reading time (there's so much information to be absorbed!)
- Take special interest in any brothers and sisters of the disabled child.
- Acknowledge how little you know about the disabled child's condition, but affirm your willingness to learn.
- Buy books for the parents that seem like they might be useful, but ask first. The parents may jabe a preffered approach.
- Learn to give appropriate explanations to your own children. For example, "Kevin's brain works differently from ours. He annot speak and he finds it hard to look people in the eye, but he still likes it when you say Hello to him."
- Be available as a listening ear through the years. Disability is permanent; your friendship needs to be likewise.
* Louise Inglis’s book, Happiness in His Eyes: A Story of Love and Disability, can be found at her website.