Epilepsy Awareness Month: Interview with Mike and Lorraine Kimble

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

Mike, Lorraine and I have kept in touch and followed each other’s stories for years. When Robert had pulmonary problems, Lorraine reached out to give me advice on how to manage the congestion and mucus to keep pneumonia at bay. We’ve shared our love of animals, stories of rescuing them and nursing them back to health or through losing them.

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 Kimble

“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.

Trish

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Thank you, JC Penney!

Dear JC Penney,

It isn’t every day that a big corporation makes things right with a disgruntled consumer. It’s probably even rarer to have a couple of problems brought to their attention and then resolved within just over 24 hours.

You did just that and then some!

 

Robert and his favorite stylist, Salita

I take care of my disabled brother, Robert, and he likes to look sharp. His hair can get pretty wild from wearing a helmet most of the time and with his curls (yeah, no one in the family knows where they came from).  He also has a mustache that I’ve only seen shaved when he’s going in for brain surgery.

He shaves himself (thankfully, I recently was able to convince him to use an electric razor instead of a disposable – those were a deadly weapon in his hands!) but he likes to go in for a haircut and mustache trim every now and then.  He makes it clear, though, he only wants “a trim.”

He is very specific about his look (at least he isn’t a shoe hoarder like an unnamed older sister . . .)

I have always liked shopping at JC Penney and thought the salon would be a good place to take Robert.  We lucked out when we found Salita, Robert’s favorite hair stylist!  She treats him like a king which does not go unnoticed by me or Robert. When Robert and Salita first met, Robert told her his story of how he has had epilepsy his whole life and how he almost drown when he was a teenager.  I just watched as they bonded during the shampooing and conditioning and cutting and trimming.

I knew I wouldn’t be able to take Robert to any other stylist – Salita was meant for Robert.

We try to see her every six to eight weeks or so and Robert was recently due for a visit. He usually uses his walker but has been extra wobbly lately and I wanted to see if I could add to my shoe collection after his hair appointment. I decided to use the wheelchair for this visit.

Once we got to the store and up to the door, I pressed the handicap button only to find it was not working. There are two sets of doors leading into the store so this was no small feat opening a door and getting Robert in (thankfully, a stranger held the second door open for us). 

We made it to the appointment and Salita gave us a warm greeting, big hug and even bigger smile. She took us back to her station and went to work on Robert. She even noticed how “healthy” Robert was looking since he moved in with us (note to self: cut back on the Rocky Road ice cream). No one but Salita could say that and really mean it in a kind way. 

After the appointment, I wanted to shop a bit and pushed Robert around the store picking up a top or two (no shoes this time). I wanted to make the trip quick because the last time we were here, Robert needed to use the restroom and I had to take him into the ladies room (after scoping it out and making sure we were the only ones in there). 

Side rant: I wish more stores would have family-style restrooms!

Once I was done shopping, we left through the same non-working doors and again relied on the kindness of other customers.  I was frustrated though and was determined to let you know my frustration.

I have been known to write a letter or two to corporations when service or products were shoddy. Once when I was in college, I even wrote about a Pop-Tart that exploded in my toaster and requested a new toaster. Instead, I got a coupon for more pop-tarts which was just fine for this poor, starving college student. 

On the drive home, I composed my letter in my head while Robert worked his word search puzzle.  Once home, I sent an email through your website and also (because I love Twitter), sent a tweet.

Never in a million years did I expect a reply to my tweet.

Not only did I receive a reply to my tweet by the next morning but we had a conversation about my issues (the door and the bathrooms) and I also mentioned how much we love Salita. Whoever was tweeting was kind, considerate and solution-oriented – I couldn’t have been happier with this sort of response!

Next, I received a response to my email only slightly later than the tweet.  Within a few hours of the electronic correspondence, the salon manager called to tell me the door would be fixed within two hours that day and Salita would be recognized with a card and a gift.

Not only that but he told me there was a family-style bathroom on the other side of the salon that I didn't know about!

What a win! I was thrilled Salita was being recognized for going above and beyond and was very happy the doors were going to be fixed immediately.  Plus, I feel much more comfortable knowing there is a family-style bathroom available!

What terrific and quick solutions! Thank you so much!

I mean, really, the only thing that would have made this even better would be a new pair of shoes but I’m assuming they’re with my toaster . . .

[UPDATE: JC Penney keeps getting more amazing. They reached out and offered me a gift card for a pair of shoes! I thought about declining the generous offer for about 2 seconds but, hey, it's shoes! Thank you, JC Penney, not only for the shoes but this whole experience.] 

What I learned From New Home

Robert has lived with me and my husband, full-time, for two months now.  Before that, he lived with us on the weekends and lived at New Home through the week (unless he was sick or if we had to cut the weekends short because of the 73 day rule).

I made no secret about the fact I had some troubles with New Home and the facility before New Home.  I expect the best possible care for Robert whether he’s living in a facility or living with me.  Sometimes it just takes a while to get the facilities on board.

Playing cards at New Home

It’s easier to see what I’ve learned from these experiences with New Home and Old Home now that Robert is no longer living there.  (Now that I’m no longer on red-alert making sure he’s well cared for.)

I don’t think having Robert live with us is giving up on facilities because I think there are plenty of wonderful, caring facilities that Robert would be perfectly happy in and I would be happy with.  Finding those facilities will be priority number one if Robert ever gets to the point where my husband and I can’t give Robert the best possible care. 

In the meantime, I have gained some insight into these facilities and have to give credit where due.  Yes, you heard it here first - I am admitting that I learned a few things from New Home. Not that it was easy coming to this realization . . .

1.  Client care.  The people who truly care for the clients are the staff workers.  The people who work at the bottom of the pay scale but whose hearts are huge.  At Old Home, the person who cared for Robert the best was the woman who did his laundry.  She made sure his sheets were changed and cleaned daily and washed and returned his clothes to him within the same day.  She took me aside when I moved him out of Old Home and explained that he was extremely incontinent every night and the New Home should make sure he was kept clean and dry.  The real concern she showed for Robert touched my heart and made me wish she could follow him to every care facility he ever had to live in.  New Home had their own caring staff, many of whom were young adults supporting themselves through college.  They laughed at Robert’s silly jokes or took time to play a game or two of cards with him. 

When touring a facility to see if it’s the best fit, pay attention to the floor staff.  Do they engage with the residents or just do their work and watch television?  Do they seem at ease having conversations with a disabled or elderly client or are they uncomfortable?  

2.   Facilities need help being comfortable with family involvement.  Each facility is different, of course but there are varying degrees of comfort with family involvement.  Old Home was used to families visiting or taking the residents out for the day.  New Home had multi-layers of rules and regulations as far as visiting at the home or taking Robert out for the day or an overnight visit. The first time I took Robert out for the day, there was a great deal of commotion and chaos when we returned because they were not used to the clients leaving with family.  I felt like a criminal for taking Robert out to dinner.  However, I was not about to be intimidated into not visiting so learned all the rules (call House Manager and Supervisor ahead of time; sign the sign-in sheet; have an estimated time of return, etc.) and followed them.  After a while, the staff got used to me and relaxed the rules a bit.  Apparently, I wasn’t quite the scofflaw they thought I was (although, after Robert had lived there for almost two years, one new staff member asked for my identification before she’d let me into the house. That stung a little.). 

3.  Supply companies and program services.  The staff and even supervisors at both Old Home and New Home were terrific at pointing me in the right direction for services and programs for Robert.  It was at the suggestion of the Director of Old Home that I enroll Robert in the local Regional Center which opened up all kinds of services for him.  Because of this, Robert became eligible for a Day Program for other disabled adults and transportation services.  When the Regional Center suggested a few Day Programs for me to choose from, the staff at New Home provided insight into the different programs and which one would be a good fit for Robert.   Their guidance proved extremely helpful and accurate and Robert has been very happy at his Day Program for three years! 

New Home also provided me with the names of supply companies to use when I moved Robert into our home so I could continue to get his incontinent supplies.  This was extremely helpful and saved me research time as well as time spent setting up a new account. 

4.  They want to do the right thing.  Even though I had difficulty with the administrators in both facilities, I do think these people wanted to do the right thing for the clients.  In fact, I saw change in both facilities over time and, sometimes, after Robert left.  Both are corporations and must watch out for the bottom line which affects many, many decisions (staffing ratios, turnover, meal selection, to name a few).  It’s a difficult balance between solid client care and profits.  Administrators are juggling both goals and it oftentimes looks as if they lose sight of the health and well-being of the clients.  I can’t blame them their predicament.  I do blame the corporate atmosphere and, if Robert ever needs another facility, will look into privately owned homes.

5.  Communication.  I can’t stress how important communication is with these facilities.  When first placing Robert, I really underestimated how difficult it would be to communicate with Old and New Home.  Now I understand they have several residents of varying degrees of disability, health concerns and family (or not) involvement and may not be able to give Robert their full attention and me full reports on Robert.  This was something I assumed would be easy going in but soon realized there were always “behind the scenes” reasons for their behavior and lack of communication.  It was really difficult to maintain good communication because when I asked for seizure logs, for instance, I was always promised them.  And then they wouldn’t show up, even after repeatedly asking and explaining their importance.  If we ever need a facility again, I will need to come up with a much better plan to ensure great communication from the outset. 

I do appreciate both Old and New Home for taking care of Robert before we were able to do so.  I think they both provided Robert with very positive experiences (remember Robert playing Bingo every day and hoarding his Milky Way “prizes?”) 

These experiences have helped us get to where we are today – Robert living with us, trying to get used to dogs who are fascinated by him and love to invade his personal space (one of them, anyway) and all of us trying to establish new routines.

For this, I am grateful for the lessons I’ve learned from New Home (and Old Home) and for helping us get to the place where we all are today: Home.