This is not so much an interview as it is sharing conversations I have had with a couple who cared for their profoundly disabled son, Mikie, for 43 years.
I asked Mike and Lorraine to participate in the Epilepsy Awareness Month interviews three years ago but life was as busy as you can imagine it might be caring for an adult who has been disabled since birth. Their son, Mikie, was not only born with epilepsy and was blind and unable to walk or talk but was mentally about six months old.
|Mikie and Socks|
Not too long ago, Mike and I had a respectful discussion about politics and didn’t even try to change each other’s minds and didn’t engage in any name-calling! (Yes, civilized disagreements can happen.)
There have been times Mike and Lorraine have asked for positive thoughts and prayers for their Mikie when he had fallen ill and their friends and family came through in droves. Mike and Lorraine are very spiritual people and the prayers from friends and family, far and wide, provided them with comfort during these difficult times.
They have given Robert their fair share of prayers and positive thoughts as well, when needed which have been most appreciated.
Sadly, Mikie died this past October 9 but the world has become a better place because Mike and Lorraine were generous enough to share him with us. My hope is by sharing him with you I can do Mikie justice and also provide Mike and Lorraine some sense of comfort.
While this epilepsy ending may not be what we wanted it is still another story of resilience, hope and strength.
Before he died, Lorraine shared with me a little bit about Mikie:
“Mikie has more problems than most kids who suffer seizures, though a lot of kids like Mikie have seizures. Mentally he is about 6 months old, but he has been 6 months old for 43 years. He is blind and cannot walk or talk but makes vocal sounds that tell us when he is happy or when something isn't right. We have oxygen and his nebulizer on hand when we need it.
“As for seizures, the meds he is on now keep them at bay. Once in a while we see what we call a “fleeting” one. Sometimes we know and other times we don't. In times past, his seizures were very severe and difficult to control.
“As far as kids like him, he went to a special school for kids like him or even more severely disabled. When he was young we often went out as a family but as he aged it is more difficult because Hubby Mike has to lift him up and out of the wheelchair to the car and then tear down the wheelchair to fit in the car. Mikie is four and a half feet tall and weighs a little over a hundred pounds. We used to have a van but we used it so little because Mikie just doesn’t tolerate sitting up for more than a short time, even making it hard to go for doctor visits.
“The only problem we have when we go out is the stares and looks. We went to our zoo one beautiful day. Mikie loves noise and crowds but these kids followed us everywhere. We could hardly push Mikie in the wheelchair because they would stop walking by us and start walking backward right in front of us and no matter what we said they would not leave. My patience was gone by the time their mother finally caught up with them and told them they were ready to leave.
“I asked her if she had a good time and she replied that she did. I told her, “Well thank you for making sure we didn't. Your kids never saw a special needs child before?” Admittedly, I was nasty and hubby was a little mad at me but at that point I didn't care.
“This is one of the reasons why we don't go out as much. Plus, Mikie cannot sit up as long as he used too either.”
Mike shared some more positive experiences.
“But there were other times when the stares turned out to not be gawking. Once when we took Mikie with us to the SC State Fair I noticed some teenagers staring at Mikie. They came over and one of them said, “Is he one of Connie’s kids?” Connie was a mother of another child like Mikie that worked at the school with the kids and also watched many of them in her home after school, Mikie being one of them. While Robin was her special child, Robin had a very normal brother with regular friends and they came to love “Connie’s kids.” The kids at the fair were some of those friends and they recognized Mikie. They stopped just to show their love for special kids like Mikie! Later, while walking down the midway a young man came up and thrust a huge stuffed animal into Mikie’s lap!
“Another time we were on vacation in a far away state and while sitting at a restaurant we saw a women at another table staring in our direction. I was feeding Mikie, giving him a spoonful at a time while taking a few bites from my own plate. The lady came over and told me she also had a special child her child in her family and wanted to know if she could feed Mikie so I could finish my meal!
“And then while watching a Chinese Acrobatic show at “Splendid China” in Orlando, one of the acrobats noticed that Mikie was different and came up to him after the show and gave him a necklace with a beautiful heart dangling from it!”
Situations like these can be such a useful teaching opportunity for parents! I can only hope that Lorraine’s admonishment of the mom hit home and that she later talked to her kids about respecting all people, disabled or not.
Unfortunately, not all people are kind and Mike was very cognizant of this and was a fierce protector of Mikie. For many years, Mike did not share photos of Mikie for fear they would be used to create unkind memes. The photos used here have been shared publicly by Mike and I am happy to share them as well with the belief that people will be kind and not resort to the type of behavior Mike protected his son against for so many years.
Mikie’s dad shared this image and the description that follows.
“I know people wonder what Mikie’s diagnosis was, and they say a picture is worth a thousand words. This image of Mikie’s brain was taken fourteen years before his death.
“The little white dot and line in the middle of the image is his shunt, draining the excess fluid from his brain. The dark areas are basically fluid. The damaged brain that was there is gone.
“It certainly explains why Mikie was having seizures and why he was unable to learn. To look at this image it would be easy to assume that Mikie was a vegetable unable to do anything, but you would be so wrong to make that assumption! It was nothing short of miraculous that he could do the things that he did.”
Example after example showed me just how devoted Lorraine and Mike were as parents.
Lorraine told me that some of Mikie's classmates had only one parent and that the other parent wanted nothing to do with their special needs child. Lorraine said, “We have learned that it takes a team to care for a child. The love for mom and dad are felt through the child. God has blessed us with each other and a very special child.”
Mike shared a story of Mikie at the service for him which further shines a light on this extraordinary family.
“On occasion people would ask if Mikie enjoyed magic, since I enjoyed magic as a hobby and even as a part-time business for over 15 years. The answer was no, because Mikie could not see and he simply could not understand. But, it turned out that Mikie was a bit of an illusionist himself, even before I took a serious interest in the craft.
“After Mikie got out of school when he was 21, he had very extensive back surgery, a spinal fusion with two rods wired into his spine. It greatly improved his quality of life, allowing his organs a little more room and helping him to sit up. Our friends at Grace Covenant Church in Blythewood knew about this and also knew that he was blind. Members would take turns doing nursery duty, and on the day of this incident Ed Sweeten and several of his children were taking their turn, and Mikie was there with them in the nursery.
“At the conclusion of the worship service, several of the Sweeten children came to me exclaiming, “Tell dad that Mikie grinds his teeth!” Well, yes he does, and while that might bother some people, we were so used to it that it was music to our ears; either that or we tuned it out. “Dad says that the rods in Mikie’s back must be making the noise!”
“Mikie did a great Stevie Wonder impersonation, rolling his head side to side, and at the same time, he would grind his backmost molars in unison. Ed thought that it couldn’t be his teeth (as the children insisted) because his teeth were not clinched in the fashion that is usually associated with grinding one’s teeth. What he didn’t know was that it simply was not possible for Mikie to close his front teeth tightly together because of the many years of biting his arm. (That’s another story for another time.)
“So the illusion Mikie was able to pull off was that of creaking bones and metal as he moved his head side to side. And even though his mouth was open, you could not see him grinding those molars. The children were ecstatic that their dad could be so wrong! By the way, Mikie had those molars extracted and the surgeon said that should fix the grinding problem. Not so, he just moved up to grinding the next set!”
And, finally, I’d like to share a portion of Mikie’s obituary to honor this incredible family and the team of friends, family and caregivers who cared for Mikie throughout his life.
“Michael ‘Mikie’ Lee Kimble of Columbia, as he left his fragile body and entered into the presence of our Lord on Sunday morning, October 9, was able to do at least three things he never has done before. He walked, he talked, and he could see. Mikie was born on March 2nd, 1973 to his parents, Michael F. and Lorraine M. Kimble. Though blind and severely disabled and never able to speak, God used Mikie in great ways to call others to himself both in salvation and service. Though his body grew to barely over 100 pounds and he remained an infant for all of his life, as if he had been 6 months old for 43 years, never learning to walk or talk. But he knew how to laugh, and give great hugs and he stayed busy shaking and throwing his toys from his bed so others could serve him by returning them to him. And in doing so, friends and family were serving Jesus, because He said that “what you do for the least of these you do also for me”, and if any child was one of “the least of these” it was Mikie.
|Mikie, Mike and Lorraine|
Mikie is survived by his loving parents, Mike & Lorraine Kimble, Uncle Thomas (Mary) Kimble, cousins, Sharon Davis, Peggy Davis, Gerald Davis, Joel Kimble, Thomas Kimble Jr., Mary-Cathy Sewert, Tracy Kimble, and Laura Malcolm Bischer. Mikie was preceded in death by his grandparents, Margaret Caudill and Edna and Ivan Montague and his Aunts Barbara Davis and Lela McGuire, and Uncles David Davis and Steven Malcolm. The family expresses their gratitude to the health care workers at Palmetto Health Richland that have aided in Mikie’s care over the years, as well as the multitude of others that have assisted us, especially our friend and neighbor Cheryl Smith.”
The story does not end there.
After Mikie’s death, Mike and Lorraine contacted me as well as many others to see if any of the unused caregiving supplies would be of use to others. They were thinking of others within hours of losing their son.
This selfless couple will forever be in my heart and I hope their many memories of Mikie bring a smile to their heart.
Thank you to Mike and Lorraine for sharing Mikie with us.