WHATS IN THIS BLOG:
• Cerebral palsy.
• The danger of driving.
• When things seem hopeless.
• The car that changed Jessica’s life.
Now and then I hear of a heart-warming story that is truly inspirational. This story was written from the perspective of Jessica’s mom who I know rather well. Here it is:
When you ask expectant parents if they’re hoping for a boy or girl, often the response will be, “Either as long as it’s happy and healthy!” Sometimes life throws a curve ball and the child you have been waiting for is not what you expect.
My eldest daughter Jessica was so excited to see the world that she came two months early. Not only was she premature, but Jessica’s birth was complicated by her umbilical cord being wrapped around her neck. As a result of lacking oxygen, Jessica suffered brain damage and was later diagnosed with spastic triplegic cerebral palsy. Those big words essentially mean that she has disability that impacts her balance, gross motor movements, coordination, and muscle spasticity in her legs, her right arm, and her back.
She was blessed with a mild form so that is hard to tell anything is wrong until you watch her walk. Her gait has always been lopsided, and when she is tired her muscles will tighten up to the point that she has difficulty keeping her back straight and her right arm will spontaneously draw up to rest against her torso. These moments are painful, but the only thing to do is rest until her muscles loosen on their own timing.
When we observed Jessica’s motor difficulties, we took her in to see specialists and begin early intervention. Her father and I were told that she would have lifelong struggles and that she would never be able to run or jump or play as a typically developing child would and that the best we could do for her would be to buy a computer and sit her in front of it.
That is not the life my husband and I envisioned for our daughter. We spent years taking her to physical therapy and keeping her active, and because God blessed her with such a mild case, Jessica grew up without ever thinking of herself as a person with a disability. Though she was aware of limitations that she had, she adapted well.
THE DANGER OF DRIVING.
On her fifteenth birthday I took Jessica in to get her driver’s permit. It’s hard to know which of us was more nervous about her behind the wheel. It wasn’t long into her driving practice that we realized there was an issue. Jessica did not have the coordination needed to move her arms and legs in tandem with the requirements for driving, and the stress of operating a vehicle caused her muscles to seize. She remarked on more than one occasion that she felt her arms pulling the wheel so strongly that she was afraid she would pull the steering wheel right off!
She would do odd things related to her incoordination like hit the brake every time she needed to use her blinker, and changing lanes became a recipe for disaster. There was one incident where while trying to make a left turn she didn’t slow down enough initially, but then stopped in the middle of traffic while in the turn because she couldn’t gauge how hard she was pressing the brake pedal. That scared us both, and after some yelling and some tears, Jessica vowed not to drive again.
For the next nine years Jessica had to rely on friends and family for transportation. We live in rural New Mexico where there are no buses, and even while going to the University of New Mexico and getting a job in the city of Albuquerque, public transportation was so unreliable that Jessica had a terrible time trying to get around and missed out on many opportunities because of her lack of transport.
We realized that this was not going to work long term and decided to approach the Division of Vocational Rehabilitation (DVR) about options for hand controls in a vehicle. Jessica went in for a driving test, and after lots of paperwork it was decided that hand controls were necessary. DVR would provide the equipment, and the installation of said hand controls, and even funding for the training in how to operate them! Things were looking up!
The next three years consisted of red tape, bureaucracy, counselor changes, trainer changes, and scheduling conflicts. I will spare the details, but what should have taken five months became year after year after year. It was hard not to despair, especially for Jessica. She had moved to Albuquerque and was working part time making enough to live on but not much more.
She still had to rely on other people to help her get to work, the store, doctor’s appointments, and other places, and didn’t have much more in life than work and her nightly walks to the library. During this time Ian gave her some financial assistance so that she could hire an Uber service that allowed her to go work and a few fun events for which she was grateful.
WHEN THINGS SEEM HOPELESS.
After a time, Jessica finally finished her driver’s training and was ready for her own hand controls. Then a new problem came up: while DVR would pay for the controls and installation, they would not assist with acquiring a vehicle. Furthermore, strict requirements mandated that whatever vehicle Jessica used had to be a newer car with a very low number of miles. Thus began a vicious cycle – Jessica could not afford a vehicle that fit those specifications because she did not earn enough money, but she could not earn more money because she had was unable to get herself to work!
Things truly seemed hopeless when the kindness of others intervened. Ian knew Jessica’s story, and out of his amazing generosity gave Jessica a significant sum that allowed her to put a down-payment on a car. A coworker also set up a GoFundMe account to get Jess a car. Many people offered support, and through their combined giving Jessica was able to purchase a car that not only fit the DVR requirements but was also the car she really wanted (a 2017 Kia Soul in the brightest alien green you can imagine!).
THE CAR THAT CHANGED JESSICA’S LIFE.
Jessica’s life has changed dramatically in the five months since she has been able to drive. She went from working part time and spending most of her free time at home to working full time in her dream career as a signed language interpreter and spending most of her free time as a social butterfly serving and connecting with others in her church.
Jess has joined a couple of Bible studies were she is able to connect and make friends, joined a volleyball league where she gets to play with a few awesome teammates every week, and joined the interpretation team at Calvary where she is able to provide communication access to Deaf and Hard of Hearing people who want to “hear” the word of God.
But Jessica’s favorite new adventure of all has been teaching a Sunday School special needs class. Every Sunday she gets to love on children who have autism, play with them, and tell them about Jesus. She has talked about some classes that didn’t go as planned, and has joked that maybe the reason it took so long for her to be able to drive is that, “God was teaching me patience because He knew I would need it!” But at the end of the day, “There is nothing I would rather be doing than serving God and loving on these kids.”
Jess now has the opportunity to finally go places and do things that she has always wanted to do. She is taking advantage of her newfound mobility and making up for all the lost time in those days when she was stuck at home. I love seeing her out living her life and absolutely enjoying it. The many people who have provided love and support over the past several years have helped Jessica jump the cerebral palsy transportation hurdle and completely changed her life. We are so grateful.
POST-SCRIPT from the Gray Nomad:
The right place at the right time. My name appears in the story above, although my part was minor. The brunt of the work and meetings and frustration was borne by Jessica and Paula (Jessica’s mom). But I’d like to clarify how I got involved. The opportunity came floating by because Paula was my house cleaner, and she was frustrated about Jessica’s situation. But after asking a few questions, I could see a legitimate need. I reached up and grabbed the opportunity — I made a mental commitment to help. The extent of my help needed to be defined, of course, but I had stretched out my hand and was offering to help. That was a critical step.
But I was still uncomfortable. I suggested dinner so that I could meet Jessica, and we settled on Thai Orchid, a place on Central in ABQ. Jessica prefers vegan food. To be honest, I was nervous since it was the first time I’d met Jessica. She walked to the table slowly and carefully, and we ordered. With Paula, words flowed freely, and that helped bridge the gap. Jessica spoke cautiously, choosing her words with care. But her words made good sense and we all eased into meaningful conversation over a delightful lunch.
After lunch, I asked Jessica if she would review my upcoming book called FracMan. She was happy to do that, and I was surprised at her grasp of a subject (fracking and oil-and-gas companies) that must have been foreign to her.
She wrote a serious review with lots of good points, and which also suggested dropping an entire chapter. I was affronted at first. But after I let go of my pride, I figured she had a good point and I cut the chapter like she said. She was the only reviewer who suggested I cut a whole chapter. It was a gutsy call, and I think it was the right call. I realized there was a lot more to Jessica than I had thought!
Helping someone to hope. This has been my credo for many years. I even wrote a book about it (Hiking toward Heaven). When I stop running on my own treadmill for a moment and look around and listen, I see and hear people that need hope. Everywhere. Nearly everyone needs hope. Some people are hopeless and depressed and find it hard to get up in the morning. Others just need some hope today… maybe physical help lifting something or running to the store, or financial — giving a few dollars or taking someone for lunch. And some people would appreciate just knowing that someone cares enough to ask, “Can I help you?”
When we make a mental commitment to help someone else, God can amplify the hope and it can start cascading down like a waterfall. I’ve done it, I’ve seen the waterfall, and I’ve cupped my hand under the clear, pure flow of hope.
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The Gray Nomad ….. Help someone to hope
Then were our mouths filled with laughter, and our tongues with singing… The Lord has done great things for us! We are glad! … They who sow in tears shall reap in joy and singing. (Book of Psalms, chapter 126).