A Mother’s Journey to a Miracle at Cleveland Clinic

Today, I am completely turning to a new topic. Well, not completely. This article does pertain significantly to one of the topics I highlight on this blog: leadership. Leadership, taking risks, loving someone else more than your love yourself, being a parent, struggles, getting through the struggles, and always having faith in what is meant to be. Of course, we can’t forget, always believe in miracles.

My mother wrote a piece to be sent to a magazine article, in 2002, regarding her and my father’s struggles with my younger sister who has cerebral palsy. She found this letter several days ago, and I would like to share it with you here, on my writer’s page. Hopefully, this will help those who have children with special needs in making their decisions, understanding sometimes the decisions you make are a risk, and realizing why my parents decided to take the leap into an intensive surgery which provided my sister with a privilege many take for granted: the ability to walk.

The letter below was written by my mother, Debora Johnson, on April 12, 2002. 

Disclaimer: If any news or magazine article would like this published, please reach out to me at AmberLDrake@dogbehavior.org. 

“Dear Editor,

Megan, our 7-year-old daughter, has Cerebral Palsy with spastic diplegia. This condition has also caused some mental delays. For years, Megan was only able to walk with a walker. She would try to walk independently, but she was unable to put her feet down flat (this condition is referred to as tip toe walking). When walking independently, Megan’s legs would scissor and she would fall.

Megan’s tendons were not long enough to permit the heel of her foot to touch the ground. Megan’s method of walking caused her back and legs great pain (plus she was becoming discouraged).

On October 26, 2001, she had an operation that has given her the ability to walk independently; thus, relieving a great deal of her pain.

Megan has a sister, Amber, and a brother, Mitchell, who are terrific with her. Megan has always wanted to keep up with them. She spent many years trying to do what they were  doing, but a walker can only get so many places.

One day, after watching Megan get so upset because she couldn’t go play like the other children, I decided (like many times before) to search for a miracle cure.

I sat at the computer upset looking blankly at the screen at websites containing information regarding Cerebral Palsy. I had been on this page before, but never noticed this website that happened to pop out to me that day. The website displayed an article about Selective Dorsal Rhizotomy, a surgical method for children who have spastic diplegia and are borderline walkers.

It seemed like a miracle.

I was so excited, I stayed up until 2:00 in the morning reading different articles. Some were good. Others were not so good. The next morning, I talked to my husband about the articles I had found and he felt the procedure was worth further investigation.

The articles mentioned two institutions specializing in this type of corrective surgery; Cleveland Clinic and St. Louis Children’s Hospital. We requested information and read everything each of them sent to us.

We decided to make an appointment in Cleveland, Ohio, to see if our daughter would be a good candidate for the procedure.

Once we arrived in Cleveland, Megan was seen by a whole team of specialists. After going through the various tests, the doctors and therapists met to return to us with a decision.

The wait was TERRIBLE!

We were so anxious, and so very scared, at the same time for them to return with their decision. What if she wasn’t a good candidate? What if she was?

The neurosurgeon finally came out of the meeting with two options: a pump (which they thought Megan was too small for) or the Selective Dorsal Rhizotomy.

The Selective Dorsal Rhizotomy involved clipping nerve endings in the spinal cord that were giving improper commands to Megan’s leg muscles. The surgeon also informed us Megan’s tendons may also need released in her legs.

My husband and I elected for the surgery.

We had tried other procedures before to help Megan with the spastic diplegia, mainly Botox injections, which did help temporarily. We really felt we did not want to keep doing that procedure. Botox injections were painful to her and the effects did not last.

On October 26, 2001, my husband, Megan, and I went to Cleveland Clinic. The doctors and nurses were WONDERFUL!

When they took Megan back to the O.R., they let me and Megan’s barney come and then every nurse and doctor in the room sang with Barney until Megan went to sleep. The surgery took approximately five hours.

Three hours in, the orthopedic surgeon came out and confirmed Megan needed to have the tendons cut also.

Megan came out of surgery, with full length casts on both legs. She was in a great deal of pain until the morphine began working. She had an epidural to numb her legs while receiving shots of morphine to handle the pain.

The first couple of days were very hard, but thankfully she does not remember them. After the surgery, she worked with a Physical Therapist and an Occupational Therapist. Within a month, she could walk in her walker with assistance.

When the casts came off, Megan worked hard. She was soon walking with her walker without assistance. Megan loves when everyone in the family claps for her. The more we would clap, the harder she would work. Even the neighborhood children joined in to encourage her.

On February 24, 2002, at approximately 7:oo PM, Megan stood up at our diningroom table and said “I am going to walk by myself,” AND SHE DID! 

Without anyone holding her hand, and without a walker, she walked!!! 

Megan was so proud of herself, she walked until she was exhausted. Although Megan can not walk long distances without her walker, she continues to walk better and better every day!

There are a lot of people who made Megan’s walking a possibility.

Without the surgery, Megan would have developed contractures and would have never walked independently. Eventually she wouldn’t have even been able to walk at all.

Her back and hips would have been an area of constant pain. Her doctors say she is doing remarkably well. They have told us children usually continue to improve up to a year after surgery.

We hope someday, Megan will eventually not need to use a walker, but we are proud of her for being so strong and our other two children for being so supportive of Megan.

I hope this information brings enlightenment to those with children containing the same diagnosis, or for those people who have been without answers and cry out for help.

Sincerely,

Debora Johnson”

 

This is an article that is a must-read for anyone who has a special needs child; especially a child who has Cerebral Palsy, like my sister.

Like my mother, I too hope this helps many. 

Believe in miracles.

 

Published by AmberLDrake

Walt Disney once said, “We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths.”. To be successful is to have no limitations, it is to work through all obstacles, to have extreme passion for life, and love for others, and this seems to be the underlying motto of Amber Drake’s life. Drake is a highly accomplished, world-renowned, and published book author, freelance writer and editor, inspirational speaker, an inspiring teacher, a well-reputed canine behaviourist, a canine cancer researcher, and the CEO of Canine Companions. As a child, she was keenly interested in the veterinary field and this interest paved way for her to be the successful businesswoman she is today. Starting with an Associate of Science degree in Biology in 2007 from Jamestown Community College, she has since expanded her knowledge horizon by acquiring a Bachelor of Science in Biology degree with courses from both SUNY Fredonia and Cornell University, followed by a Master of Arts Degree in Education (2011) from Ashford University, a Post-Master’s Educational Certification, and a Doctorate in ABD from the North Central University, Prescott Valley Arizona. Driven by her love for dogs, she regards her company, Canine Companions, as her greatest work-related accomplishment. She wrote the book, ‘Dog Talk: What Your Dog Wants You To Know’ as a comprehensive guide to understanding the behavior of dogs. She has since been involved in numerous writing jobs in the field, varying from writing about veterinary medicine for pet insurance companies to serving as the Co-founder and Vice President at Preferable Pups. She actively engages in content management, copywriting and research work, ghost-writing, and content marketing for organizations around the world. In addition to being an incredibly successful writer, canine behaviorist, and a CEO, she is an educator as well as an experienced curriculum developer. She is a Professor of Veterinary Medicine at Mentoray, where she teaches and develops curriculum. She is also an Adjunct Professor of Professional Sciences at Kaplan University and an Adjunct Instructor of Biology at Jamestown Community College (10+ years). Drake is a woman of many skills. She has been in the freelance content writing field for almost 7 years now with a vast amount of writing experience throughout the past ten years. She is a proficient copywriter, blogger, and has years of experience in content management and development, content creation proofreading, written communication, and correspondence. She has a number of certifications including, but not limited to, Canine Psychology, SEO, Content Marketing, Social Media Marketing, Snapchat Marketing, and Google AdWords. Drake is a woman of extreme passion with great love for her work as a canine behaviourist, writer, and college professor. You can read more about her on her website http:/www.AmberLDrake.org or connect with her on her Facebook page, www.facebook.com/specialistamberdrake.

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