Guiding Light

A Mother’s Journey from Darkness

She is her son’s eyes. She is his guide. His teacher. His friend. A mother of three. She praises those who help her. She walks away from those who won’t. She’s made mistakes. She’s found solutions. One day at a time. This is how she did it.

There is a calm about Cheryl Hampson that does not befit all that life has given her to worry about. There is a gentle smile and a soft, gracious voice that lulls one to believe that this forty-something stay-at-home mom has not yet met real adversity in her life. Pragmatic and ceaselessly positive, life for her is good, is the impression she hands you.

Life for Cheryl Hampson is good. She has made it that way. In fact, in an uninvited wrench of fate, adversity itself showed her the way. And make no mistake, this Toronto mom of three teenagers has accepted more than her fair share to agonize about.

Seventeen-year-old Robert Hampson is the middle child of Cheryl and husband Philip. On the day of his younger brother’s birth, his parents learned that their second child was losing his vision. Robert, at age four, went into major surgery and came out blind as a result of a brain tumor.

Life, in an instant, had ushered into the Hampson’s home uncharted challenges apart from the obvious of a new baby, a newly blind child and the affects on a six-year-old sister. Guilt, resentment and fear pulled up a chair.

“There were times when Robert needed so much attention,” Cheryl remembers. “It seemed like the baby took all of the rest. I felt so guilty that there was little or no time left for Robert’s older sister. She needed lots of time too.”

While many parents feel that there were things they could have done to prevent or lessen their child’s disability, Cheryl included, she describes how she moved past that guilt. “I just don’t think about how I could have done things differently anymore. What really matters right now is what I am doing today and what I am going to do tomorrow.”

One of those things she wished she would have done differently was to find a way to balance the needs of all her kids more quickly. Robert received different attention and that resulted in resentment from his older sister. That delicate balance of making sure each child got the attention they needed was difficult. A lot of work had to be done later with their eldest child, when there was more time, to show her they loved her just as much. In time, she did a complete turn around and has come to really admire Robert.

“There were years when we just weren’t that fantastic as parents,” Cheryl concedes matter-of-factly. “There was no parenting manual for us. If it takes a village to raise a child, the same goes for parents of kids with a disability. In time we realized we needed to learn from others.” Her advice to other parents: “Reach out for help right away.”

 Cheryl acknowledges that Robert’s growing up with a disability has in some ways been very good for his siblings. Her daughter, 19, for instance, has recently returned from one-year humanitarian sojourn in Africa and Peru, teaching and helping in crowded healthcare clinics. “Both of Robert’s siblings have a heightened sensitivity, understanding that there are people in this world with greater needs than theirs that they can help.” Their parenting mantra was always “keep it positive and foster regular sibling relationships.”

Shortly after Robert lost his sight, his mom watched him climb up onto the kitchen counter when he thought no one was looking. He was determined to sneak a cookie snack before dinner. It was an epiphany moment for Cheryl who struggled with her instinct toward being over-protective of this child. “I suddenly realized that he was still just like any other kid in many ways and needed to be treated that way. I still have to work very hard not to be over-protective,” she confesses. “There will be enough barriers in his life… I don’t want to make more for him… but it’s a balancing act between keeping him safe and giving him the help to succeed, and backing away so he has opportunities to solve problems himself.”

One of Cheryl most difficult decisions was backing away from the formalized educational system. School wasn’t working for Robert. It wasn’t working academically and it wasn’t working socially. Cheryl couldn’t stand the thought of the indelible scar this could leave on her son.

A very bright young student Robert was, but the school system frustrated him. He didn’t get the stimulation he needed. He was bullied and teased. He got into trouble. He’d test his specialized education teachers and their means of punishment by tossing objects to the floor. Twice Robert was tossed to the floor with arms clasped behind his back in consequence – once after throwing a banana – an adult reaction that Cheryl to this day believes would be unimaginable in any regular classroom.

“At first I tried to change the system,” she recounts. “But I was spending an enormous amount of energy for only incremental gains. My husband suggested that those hours would be better served by giving them to Robert.”

She agreed. “I decided I didn’t need either of the schools we tried and left. “I learned Braille, and with the support of the school system in the form of getting the curriculum from the Toronto District School Board and a weekly visit from an itinerant teacher who was a Braille specialist, we did it. It wasn’t perfect but we were successful.” Cheryl allows that her approach is not for everyone. “I hesitate to advise other parents to do the same because not everyone has the opportunity to do that – fortunately I did.”

Cheryl declares making some mistakes herself in Robert’s early education and learning from them, wisely taking a new tack with his return to school in Grade nine.

“Go in as a friend and not an adversary,” she recommends. “That’s a big mistake I made in the past. It never helps. Even if the educators agree to work with your child under confrontational conditions, how will they treat your child afterward?” Cheryl understands that a gym teacher, for example, who suddenly has a child with a disability in their class may feel overwhelmed…. “I always go in with the approach that ‘my son is a great kid. I will help you in any way I can. Let me know what I can do for you.’ When they know they have my support and know that I understand that we all make mistakes, and can fix them, it’ll be a better experience for all.” Sometimes however, you do have to be more assertive, Cheryl offers, “but pick those battles carefully. And without fail,” she adds, “thank those who have done a great job for you.”

Robert’s physical health and fitness has always been a priority for the Hampsons as well. It doesn’t take much imagination to envision how the loss of sight limits physical play opportunities – running activities primarily. Cheryl and Philip spent four years searching out programs for Robert. But even in Toronto, the big city that it is, there is a very small population of kids who are blind, and so, experiences with those kids where sports and recreation activities are concerned are very minute too.

Many programs had nothing for Robert. Wheelchair sports were not an option. Some community programs wouldn’t accept a child who is blind. Others insisted that the Hampsons bring their own assistant for Robert, even though they accommodated kids with a disability. A decade removed from those frustrations, Cheryl says things have changed for the better with many more programs now being inclusionary.

The Hampsons exhaustive search did turn up a perfect match for Robert, and he’s never looked back, or elsewhere, for that matter. Variety Village in Scarborough, Ont., had a different approach… come one, come all. A fully accessible sports and recreation facility did not discriminate among its members – able-bodied members of the community were welcome too. It is a great community melting pot for kids and adults of all abilities. At age eight, Robert decided to join the Variety Village Flames swim team.

“I will never forget that moment he walked onto the pool deck with coach Vicki Keith, a renowned marathon swimmer,” Cheryl tears. “That was the day his life changed forever. The other kids were so excited he was there. He was treated so kindly and respectfully. And he had so much fun!”

Every success, no matter how small, is recognized at Variety Village. In the pool Robert was no longer the kid being teased, being bullied, or the one finding trouble. Robert was a swimmer, the pool his “worldly oyster” and a child with goals and dreams before him. Achievements came fast and furious and Variety Village encouraged Robert to celebrate them, and his life, through their Ambassador Speakers Program. “Social skills are so important for people with disabilities who want to fully integrate into the community,” Cheryl has observed. “You can talk your way out of a lot of things,” she laughs.

But more than the social experience Variety Village has afforded Robert, and his siblings who join him there regularly, the program has motivated him to dream bigger and reach higher. He quickly tasted a new found freedom, and hungered for more. He was confident he could do lots more and although sports like basketball and soccer proved too formidable, he discovered skiing, cycling, rock climbing, sailing and ropes courses, goalball, judo and wrestling. He learned to scuba dive, water ski and sky dive.

Robert has accomplished more at age 17 than most adults have in their lifetime. But that sated scorecard is less about the Hampson’s adventurous spirit than it is about their pragmatic conscience. “We just get it done… there were times when we just didn’t know if we’d have that chance again,” Cheryl reluctantly shares. “Robert may not always be with us and that’s a very sensitive issue for our family. How do we cope with that? Denial has worked really well,” she jokes. “Actually,” she chimes without pause, “you just make sure every day is really great… we really do live that way. If there’s something Robert wants to do, we don’t wait until next year, we do it now.”

 Cheryl maintains that they were once the average family, but Robert has made sure they aren’t. “Robert has given us such at different perspective on things and doing things we never imagined.”

But as Robert matures into a young man, new sets of problems need his attention. “He’s always recognized that he has obstacles because of his blindness but couldn’t understand why anyone would think it would stop him,” reveals Cheryl. “But he’s seeing the light now, so-to-speak, that things like… driving a car… isn’t in his future – at least not legally,” she chuckles nervously.

He also understands that being a person with a disability, and a minority of one in his school, comes with dubious celebrity. “We both understand – like it or not – that the minute he walks out our front door he is an ambassador for every person with a disability, particularly those who are blind,” explains Cheryl. “Robert realizes that he always needs to be on his best behavior because those who come after him will be judged based on what people think of him. It’s a burden, but at the same time you can take that burden and flip it around. We’re taking this golden opportunity to educate people one person at a time, removing the fear of the unknown and putting them at ease.” Cheryl is quick to qualify that a smile and a lot of patience are required for this voluntary job, just as hard hats and steel-toed boots are fixtures on a construction site.

It’s still all about one day at a time for the Hampsons, but their thoughts do slide toward Robert’s future now more and more. “I believe that Robert’s ability for social interaction will make him the happiest in life and give him the most opportunities,” professes Cheryl. “Friends. Sleepovers. Self-advocacy. There will be letdowns. But I see myself as always being part of his life.”  His Guiding Light.

 By Jeff Tiessen

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