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.
