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Posted by Michael Leverett on

A Mother's Love & Independent Spirit


Author:  Edwin McWilliams & Michelle

Michelle was a single, hard working mom of two beautiful girls (ages??) who worked 45 to 50 hours a week as a Safety Specialist for Bridge Terminal Transportation in a fast paced work environment which she truly enjoyed.  Her job afforded her traveling opportunities to South GA, AL, TN, NC and FL which provided times of relaxation and fun for Michelle and the girls.  Little did this loving mother know those fun times would soon be just a memory. Michelle suffered a September of horrors in 2009 that she quoted as “I wouldn’t wish on my worst enemy.”  The first symptoms that sent her to the hospital started in her shoulders and neck but went home with a diagnosis of a strained muscle.  The following night, she went back to the hospital because she became dizzy every time she stood but was sent home after being told it was an inner ear infection   and vertigo.  The next day instead of going to the hospital, Michelle decided to go to a Chiropractor to see if an adjustment would alleviate her symptoms but to her dismay, she continued to have symptoms and to add insult to injury as she was leaving the chiropractor’s office, she bumped her head upon entering her car and thought for sure she was dying.  After bumping her head, the next morning her symptoms became worse and every time she opened her eyes she felt sick. Her parents were extremely worried and took her to Griffin Hospital.   Several tests were run and the doctors decided to keep her for observation and treated her for dehydration.  The fluids helped Michelle and she thought she was getting better because she was able to sit up, talk and laugh. Unfortunately, this was not the case. Her situation was about to get worse.   Into the night she had a seizure that caused her to lose feeling on her left side.  Saturday morning came and she had a second seizure and that night she was put on life support.  After two weeks of tests her mom had her moved to Emory where she was put into a medically induced coma and they figured out she had a brainstem stroke.  Awaking from the coma scared her greatly because she was completely coherent but couldn’t speak or move anything but her eyes. She kept having crazy dreams that felt real and thought she was yelling at everyone but no one replied.  

She came home with significant mobility limitations and her family cared for her daily living needs which can be demanding because of quadriplegia.  A few years later her parents passed away within three months of each other.  

After this, circumstances dictated such that she had to go into a nursing home.  While working with another consumer at Hilltop Nursing Home a Peer Supporter for Disability Connections met Michelle.  He noticed an independent spirit in her right away and a desire to live in the community again.   Edwin McWilliams of Disability Connections started working with her in a peer to peer role and he told her about the Independent Care Waiver Program and another state program called Money Follows the Person.  These are state programs that allow disabled individuals to live in the community with caregivers coming in each day to help them with their daily living needs.  However, these programs have waiting list and other eligibility requirements that caused Michelle to move back home without these resources. She wasn’t home long before she had to go back into another nursing home.  A little over a year later Michelle emailed Edwin and told him that she had been approved for 12 hours a day of ICWP services and she wanted peer support services to help her move back into the community.  She was now in Westbury Nursing Home and Edwin started working with her again in May of 2014.  He provided information and support related to the Independent Care Waiver Program and the Money Follows the Person program. He also suggested using an iPad communication app to speak with which she tried and started using it regularly.  She set goals to parent her children and become more involved in their activities.  She pursued these goals with all her heart and Edwin provided support through visits and emails.  She set a goal to be more independent and her love for her children was the driving force behind all her endeavors for independence. 

Edwin told her how she could control her home environment through her iPad.  He demonstrated the control of a home environment to both Michelle and her transition planning team.  She set a goal to control her environment through assistive technology.  Michelle and Edwin worked with MFP to acquire funding to pay for such a system.  Afterwards Disability Connections designed, installed and help fund a Vera Environmental Control system.  This system allowed Michelle to control every switch in her home, 4 receptacles, her thermostat, front and rear door deadbolt locks and an indoor and an outdoor camera.  

She moved out of the nursing home in October 2014 and into a wheelchair accessible home with this environmental control system. I once asked her about her environmental control system and she expressed appreciation for it noting its usefulness during times in bed when no one was with her.  She accomplished her AT  goal and other goals in different measures.  She wasn’t able to parent her children on her own but she was able to spend more time with them in various activities like a trip to Six Flags, another to Dauset Trails, one to the skating rink and other outings that I’m sure she treasured greatly.  

On December 16, 2015 Michelle passed away after suffering another stroke.  I, Edwin McWilliams enjoyed working with Michelle and I count her as a dear friend.  She had an independent spirit and a great love for her girls.  When I think of Michelle, I will first and foremost remember her love for her daughters and how she fought to be a part of their lives.  I then think of her independent spirit and how she did all she could to take care of her own business and life.  I’ve worked with many different people with various disabilities over the years and Michelle’s accomplishments will always stand out.  It has been a blessing for both I and Disability Connections to have known Michelle.  Disability Connections strives to improve the quality of life for each disabled individual we work with and If we were able to improve her life in any way we are very thankful for that.  I dedicate this memorial writing to her two daughters.

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