Sep 16 2012

Survivor Spotlight – Mary Knotts

Mary Knotts – By SCTA Volunteer Joanne Glosser Jaeger

I am 50 years old, married and have a daughter Michelle (Shelly), and 2 cats. Yes I am a crazy cat lady. I love to do scrapbooking and read and do Sudoku puzzles.

Twenty -two years ago I was very excited when I found out I was pregnant. However towards the end of my pregnancy I started having difficulty walking and my butt went numb and the last 2 weeks my knees hurt and I could not sleep. The

doctors blamed everything on my baby pressing on nerves in my back.

After delivery they took Michelle to the special care nursery right away. She didn’t cry and I was so worried about her. The next day a geneticist said that she had Pierre Robin Syndrome which is characterized by a Cleft Palate, recessed chin and tongue going down her throat. I remember visiting her in the Special Care Nursery and she had to work so hard to breathe that it made me cry.

During this time the doctors were trying to find out why I could no longer walk and why my bladder function had disappeared. It was a big shock to find out I had a spinal cord tumor and needed surgery. He said they were going to do surgery right away. This was 3 days after I had Michelle.

My husband spent his time either visiting me or going to the special care nursery and seeing Shelly. After the surgery the hospital was really good about bringing Shelly to see me. When things slowed down in the NICU they would put her in a little incubator and bring her to see me. It was a very weird time because you are supposed to feel happy after having a baby and here I was recovering from surgery and I was wondering if I would ever walk again and be able to take care of myself and my baby and there she was in the Neonatal Intensive Care Unit.

I was sent to rehab 21 days after I had Michelle. She stayed in the hospital a couple more days and then was sent home & my Mom & a nurse and my husband took care of her. I spent 6 weeks learning to walk again. I also started radiation therapy while I was there.

Around the time I was finishing up my radiation therapy Michelle developed pneumonia and was back in the Neonatal Intensive Care. She eventually had a tracheotomy done because of breathing difficulties. Five months later she had a feeding tube put in her stomach. She was also diagnosed 5 months later developmentally delayed.

A couple years later my husband took a job in Huntsville, Alabama. Up until this time I was fortunate to have nurses coming in 8 hours a day to help take care of Michelle. She needed OT, PT & Speech Therapy and trach care and g-tube care daily. I was lucky to find a wonderful pre-school for her and I just fell in love with all the kids in her class.

After Shelly started school I started working part time. It was really hard to commit to working full time because she still needed several more surgeries and she also had numerous colds and ear infections. We were so happy when the trach finally came out in 1991. Since then she has had 2 more surgeries on her ears. She is so strong and rarely cried even though we knew she was in pain.

I started serving on several boards that provided

services for people with Mental Retardation and also was very active in the ladies group at church. It really felt good and I felt like I was making a difference. Gradually I started cutting back on this because I was doing too much. I also made sure I went on every field trip with Shelly’s class at school even when I knew at the end of the day my back would hurt and I would feel exhausted. We started a local parent’s support group and out of that came baseball and bowling and swimming lessons for our kids.

Five years ago I was diagnosed with Chronic Myeloid Leukemia. This year I had the 21st anniversary of my spinal cord tumor removal and also the 5 year anniversary as a leukemia survivor.

Unfortunately, the type of leukemia that I have does not respond to chemotherapy. It may or may not have been caused by the radiation therapy I received for the spinal cord tumor. A targeted therapy drug came out the year before I was diagnosed and I started on it immediately. The only cure is a bone marrow transplant and after a lot of prayer and research I decided to stay on the medication. I will be on it the rest of my life. There are some tough side effects that come and go like fatigue, diarrhea, nausea, edema and aching bones. Sometimes I feel like I have the flu and sometimes I feel almost normal. Some days it is a struggle to work part time and take care of our house and Shelly.

My relationship with Shelly is just like most Mother’s relationship with their children. We enjoy spending time together but we also get mad at each other. Shelly is non-verbal and I know she gets frustrated trying to communicate what she wants. I feel like I can almost read her mind at times and I know what she is thinking or I know what she needs. I know I am over protective with her and I try not to be but it is hard.

After going through everything I went through with the spinal cord tumor I also feel like I am more empathetic to her when she struggles with things like learning how to walk. Her doctors were not sure if she would ever walk. I went through the same thing – my doctor did not think I would learn how to walk after my tumor was removed. My goal when I was in rehab was to go home and take care of my child. She was my inspiration.

Shelly can be so tough and never cries a lot – even after having surgery. Shelly is my hero to have gone through more than 10 surgeries and just dealt with them like they were a normal everyday occurrence.

When I wake Shelly up in the morning to go to school and she smiles at me it warms my heart to see her happy. I go on all her school field trips and I also go to all her Special Olympics events and I love cheering her on. We’ll go out shopping and we just have the best time and she loves going out to lunch with my friends.

Shelly also loves to travel and is a great traveler. Greg, Shelly & I went to Disney World last November and we had a blast going on the rides and seeing some of the attractions. She is now as addicted to Disney as I am.

Shelly is a special beautiful young lady who even though is non-verbal, can communicate what she wants. She loves to swim, play baseball, go bowling and go to Pizza Hut.

Michelle is graduating from high school in May. I am so glad she has made it this far and I look forward to her starting at a sheltered workshop as soon as a slot is open. She has come a long way from the first child with a tracheotomy to attend school in our county.