Most mothers can vividly recall watching their children take their first steps.
Not Pam Strunk.
But if she closes her eyes, the Addison resident can imagine her wheelchair-bound son, Hunter, finally learning to walk.
‘I picture him a smiling boy with normal features, a normal body, taking his first steps with God,? she said. ‘My son is free. He’s walking. He’s talking. And he’s having the time of his life.?
Hunter passed away peacefully in his bedroom on Monday, Jan. 6, 2014. He was 17.
‘I miss him terribly,? said Pam, who works as a paraprofessional at Daniel Axford Elementary School in Oxford. ‘I have the biggest void in my life I’ve ever had because everything circled around Hunter.?
Hunter’s death marked the end of a physically-challenging, yet emotionally and spiritually-rewarding young life.
When he was just 3 months old in December 1996, Hunter was diagnosed with lissencephaly, a term that means smooth brain. It’s a rare brain formation disorder that results in a lack of development of brain folds and grooves.
Lissencephaly left Hunter confined to a wheelchair, prone to seizures, extremely limited in his ability to communicate and move, and totally dependent on Pam to care for all his personal needs 24-7.
When Hunter was diagnosed, Pam was told he most likely wouldn’t live more than one to three years due to his condition. Children with this birth defect may have shortened lives, often due to respiratory problems, which was ultimately the cause of Hunter’s death.
But the medical community’s assessment of Hunter’s future didn’t take into account his will to live, his capacity to love or his mother’s determination to sacrifice everything to not only extend the length of his life, but enhance the quality of it.
‘I just figured he was sent here for a reason,? Pam said. ‘I’ve turned into a stronger person because I have never fought as hard as I’ve fought for that boy in my whole life. I don’t even fight that hard for myself.?
Hunter never grew into a person who could fend for himself. As a result, Pam basically had to care for him like a baby until the day he died.
‘I was still rocking him at night,? she said. ‘The day he passed away, we rocked in a chair.?
Despite his disability, Hunter lived a life that was as rich and full as it could possibly be. Pam made sure of it.
‘When he loved something, it brought joy to my heart because I knew he was happy,? she said. ‘As long as he was happy, that’s all I wanted. Hunter was always full of joy.?
Hunter loved going camping, listening to country music, rooting for the Red Wings and traveling to the Michigan International Speedway (MIS) to watch NASCAR races.
The first time he visited MIS, Hunter was laying in a camper parked in the track’s infield and he just started laughing. Pam said he had never done this before.
At first, she thought he was having a seizure, then she realized he could feel the vibration of the cars going around the track and he absolutely loved it. He put his hands together and made the sign for ‘more.?
After that experience, whenever he knew he was going to MIS, he’d say, ‘Vroom!?
‘He had his own way of communicating,? she said.
The only thing Hunter probably enjoyed as much as NASCAR was balloons, which he referred to as ‘loon.? He always got one or two following a medical appointment.
Pam recalled taking Hunter to Metamora’s Hot Air Balloon Festival one year and how happy the sight of all those giant ‘loons? made him. When he reached for a big yellow rope attached to one of them, Pam told him, ‘Hunter, if you grab onto that rope, that loon’s going take you with it.?
Hunter loved people and people loved Hunter. ‘I don’t know what it was about him, but he drew people in,? Pam said.
During a visit to MIS, a drunken man riding a bicycle almost ran into Hunter’s wheelchair. The man was shaken by the experience and as a result, changed his life for the better.
‘He quit drinking because of Hunter,? Pam said. ‘And we’re friends to this day.?
During another visit to MIS, ‘A Band Called River? was performing a concert in the infield. The band called Hunter up on stage and told the audience about his struggles and courage.
After that, a man approached Pam and asked if he could shake Hunter’s hand. He told her, ‘This child has touched my heart. I don’t know why.? He then gave her a box.
‘It was full of money,? Pam said.
Knowing how important NASCAR was to Hunter, Pam had used her house payment that month to take him to MIS. The $900 in the box enabled her to make the house payment.
Hunter found much support in the Oxford area. In 2005, a coalition of local service groups, charities, families, businesses and individuals united to contribute more than $6,200 toward the purchase of a new electric wheelchair lift for Hunter.
‘It meant the world to me. I know it meant a lot to Hunter,? Pam said. ‘It meant more to me than anybody could ever realize because it made my life easier. Getting Hunter in and out of a vehicle was not an easy task.?
Once they got the lift, Pam could take Hunter to more places and add to his world.
In 2008, the Rochester-based Suite Dreams Project remodeled Hunter’s bedroom to reflect all the things he loved. The organization’s mission is to bring comfort and joy to children affected by serious medical conditions by creating healing environments in their homes.
That mission was definitely accomplished in Hunter’s case.
‘His room changed him. He had a joy in his eyes when he was in his room,? Pam said. ‘It made his room look more like a little boy’s room instead of a hospital room.?
He especially loved his race car light.
‘That light always had to be on,? Pam said.
Now that Hunter’s gone, Pam doesn’t quite know what to do with herself.
‘I never got to do anything for myself unless I could make sure Hunter was okay,? she said. ‘I feel guilty leaving the house (now). I don’t feel guilty going to work, but if I go to (do) something after work, instead of going home, I feel guilty. I don’t know how to get rid of that.?
The one thing Pam is sure of is that she wants to continue being a caretaker. Because of Hunter, it’s now in her blood. ‘I would do anything to help people,? she said.
If there are any parents out there who have a child with special needs, Pam is more than willing to share her experiences with them in the hopes that they can somehow learn or benefit from what she went through with Hunter.
‘I’ve learned a lot about kids with special needs,? she said. ‘I like working with those kids. I don’t care what their problem is because they’re people, too.?
She’s also thinking of starting a scholarship fund in Hunter’s memory to benefit students who plan to enter the medical field or somehow work with special needs kids.
‘I don’t know when I’ll be able to do that,? Pam said. ‘I’m just trying to get by right now.?
That’s not been easy when little reminders of Hunter, like the fact he loved bells, keep popping up. ‘Every time I hear a bell, I think Hunter’s close to me,? she said. ‘One day, I was hearing bells and there were no bells around. I thought if I tell anybody that, they’re going to think I’m crazy.
‘When I dumped my purse out, looking for my car keys, I found some Christmas bells that I’d forgotten I’d bought for Hunter. That’s his way of letting me know he’s here.?