This is when it first started...
Fall of 1992
Marcie was a junior in college.
She had just turned 22 in November
Her arms were failing her
as she cheered and tumbled.
What if your daughter was 23 years old, a senior in college, about to be out on her own for the first time?
Looking forward to try outs for the Dallas Cowboy Cheerleaders and she learned she had ALS (Lou Gehrig’s disease).
A disease which has no treatment or cure and only 10% of people diagnosed with ALS live more than 3 to 5 years.
Marcie’s life and the life of her family came to a dead stop!
That is what happened to my family and to my daughter, Marcie. A school leader and cheerleader in junior high, high school and the 2 colleges she attended. She had a very active life – running track, being a cheerleader and gymnast herself and then teaching young children gymnastics and coaching young cheerleaders in Arlington, Texas.
Her elbows started hurting and her arms would not hold her up as she tumbled – something was wrong. Fourteen months later in January of 1994 we got the diagnoses - our 23 year old daughter had ALS – a disease which usually strikes in mid life – 55 is the average age for ALS – not 23. Yet we are learning more and more of young people being stricken with ALS. God has blessed Marcie and our family since we have been taking this journey for 14 years.
Marcie is paralyzed and she cannot talk and has not been able to talk clearly for maybe 3 years. On her 36th birthday she gave herself life by having a tracheostomy – on the true day of her birth - and being connected to a ventilator which breaths for her in order for her to live. And after being vented she was no longer able to make a sound. We use a letter board and a computer to communicate with her. ALS takes everything but your mind.
Marcie can only move her eyes and her eyebrows. We use a letter board when she is not using to her computer. We must point to one letter at a time and she will blink at each letter until a word is formed – very slow but it works. The computer has a camera mounted under the screen which is mounted to her wheelchair – this computer reads the retina of her eyes. This computer has opened her world – instead of just sitting in her room in her wheelchair – asking me to find something on TV, or putting in a DVD to watch or turning off the TV to listen to the radio – she can do it all herself. It has truly helped me and opened her world to a little independence.
My day is spent waiting for her to call using the computer – it is hard for me to get interested in a project knowing any minute Marcie may call and when she does I may be in her room a minute or 45 minutes depending on what she is needing. I am on call 24/ 7 all day and all night – getting up every 2 hours to turn her so she will not get pressure sores. I had to retire from teaching 5 years ago to stay home daily to care for Marcie. She has not been left alone in 10 years – a friend, her Dad or I are always with her. Her dad is here at night and on the weekends so I do not do this alone. And friends do come by to visit but for the past four years her Dad or I are always here with her, even if she has a friend here. Emergencies happen and we do not what her friends to be responsible – at this point usually it is an equipment failure we are dealing with. But equipment is helping her to live (the ventilator).
Marcie is now 37 years old and living with ALS for 14 years. She still spends her days in her room but now she can control her TV, VCR, DVD and her radio. She can do Instant Messenger and send e-mail – she can communicate with her friends and family using her computer which she has had less than a year. She found, ordered and paid for all Christmas gifts for her family using her computer. She leaves the house every other month to go the doctor in Dallas.
So that is her life and ours – living in her room – which is the smallest room in our house but she did not want to move to the master bed room – she wanted to stay in her room which she has had since she was 6 years old. I often wonder what her life and ours would have been without ALS in our life. I
think she would have been married, had children and a perfect house with lots of hand made things inside. Marcie used to sew; making her own clothes, and did all kinds of crafts. Painting a little before ALS took the use of her arms and fingers. ALS does not only affect the person with ALS but the entire family and all her friends. She told someone once she was “stuck between my parents” and she is. ALS has taken away a normal life as she should have had it. As for my husband and myself – we would have never miss an activity of our grandsons but this was not to be our life. Our life is caring for our sweet girl, Marcie.
We have no idea why Marcie has ALS – but we do know it is all in God’s plan and with Him we live.
March 2008 / Written by Linda Gibson / Marcie 's mom / Arlington, Tx firstname.lastname@example.org Blog: http://linda-gibson.blogspot.com/