Crystal and Her Journey with Spina Bifida
By Catherine Wayland
The Day I Met Crystal
I met Crystal back in 2002 when my oldest son, Jax was born. Crystal is the daughter of my husband John’s cousin. As we stood at the door, I wondered about this part of the family that I had never met. The door opened and John, his wife Tammy and their children, Crystal and Bobby greeted us hello and asked us inside. Everyone was smiling and my first thought was “Ahhhh, this must be the happy, merry side of this German family, I am going to enjoy these folks.” And my second thoughts were, “Oh, Crystal is in a wheelchair, what happened?”
Crystal was born with Spina Bifida and has lived with this as a lifelong condition that has included a head shunt for liquid drainage in the brain, a wheelchair for lower body muscle ineptness, and many other medical complexities. But here she was sitting in the doorway - this smiling, loving, excitable young woman who was so glad to meet family that she had never known and a new baby! Crystal was instantly loveable. At the time she was in high school, dance, tennis and summer camp with an army of friends and fun at her disposal. Crystal loved to have me meet and come to her many functions.
Crystal Ages Out
I was amazed at the ease of Crystal’s life at the time of meeting her. And then, slowly things began to change. Crystal graduated from high school and began to lose her connections there. Of course, the teachers loved her visits from time to time, but she was no longer a student there and they had so many students to teach, and spend time with. As many of her fellow classmates, Crystal immediately got busy with a local college program. But soon that fell apart because the college level teachers were not very responsive or helpful to an IEP (Individualized Education Program) student who needed testing allowances, and time flexibilty. It was different than a zoned school for elementary, junior or high school that had to meet requirements for the children of their district. College level is not mandatory and the burden is moved to the students to navigate their choices and needs.
Frustrated, Crystal stopped attending the college and began to look for work instead. Around her, Crystal’s peers were at school and working. Crystal found a job with the Center for Disabled in her local area, and this was very exciting at first. She was picked up by a local bus service and dropped off again after the work-day. She had a sense of routine and purpose. In the meantime, one of her good high school friends had a baby and their constant companionship together had a new someone in the middle.
Crystal stayed busy with dance, tennis, camp, and her new job. The camp, Double H that Crystal had attended for her whole life had an age cutoff at 18 years of age at the time. Crystal who had been a spokesperson for the camp, took it into her charge to challenge the camp to have an alumnae program and help keep people her age at camp longer. Crystal loved her friends and counselors from the camp and looked forward to the program every summer. “Yes”, they said, “Double H in Upstate New York would have an alumnae program until age 21.” Crystal felt empowered by the change and looked forward to the next couple years of camp with her friends.
Work: Center for the Disabled
The job at the Center for Disabled did not hold Crystal’s interest for long. It was not as challenging as she had hoped. Crystal began to look for something more interesting. And then she met a guy. I can’t remember how they met, I think it was at camp? But anyway, they met and they were adorable together. Crystal’s friend was older than Crystal, also with special needs and a wheelchair. He attended a college and also drove a car. I was impressed by his vivacious energy, humor, and ambitions. So was Crystal. They stayed together for awhile and Crystal had some nice times with her friend. Then, he needed to attend a program faraway, and they said goodbye and remained friendly through email and phone.
A Dear Friend Dies
Then something terrible happened. One of Crystal’s lifelong friends died of complications from Spina Bifida. Crystal was devastated. So were all of us. This hit too close to home for everyone, but especially Crystal. Crystal had lost a dear friend and come face to face with her own mortality. Around the same time another older family member passed and Crystal mourned it all at once. The sadness was hard to shake and I worried that Crystal’s dreams and hopes had taken a big hit.
Crystal Gets A New Job
Crystal got a new job and began talking about her independence issues with still living at home. We spoke about setting up her room like a little apartment. But Crystal seemed intent on moving out on her own. She called me to ask me to come to celebrate her new apartment and her christening at her church. I was delighted and booked the trip to come from New York City with Jackson and Brody alongside. At this point my sons had developed a very special relationship with Crystal and they loved to sit on her lap on her chair and wheel around with the fancy big wheels. So, the three of us drove to spend the weekend celebrating Crystal’s new independence and spiritual ceremony. We brought a housewarming gift and hugged and hugged her with our delight at her journey.
The Suicide Attempt
We received a phone call that Crystal had attempted suicide and was hospitalized. It was like someone had taken out my brain and washed it with bleach. I could not think straight for days. Yes, I knew Crystal was frustrated and sad sometimes. Yes I knew Crystal had more challenges than anyone I knew, but I thought the church and the apartment were working. Or had I just not looked hard enough? Did I not call enough to check on her? I called her parents, my cousins to see if I could fly up that weekend, but it was decided that Crystal needed rest and therapy, not over-stimulation. I prayed and wrote a bit in my IF blog and waited. Crystal left the hospital three weeks later and I got my first phone call with her shortly afterwards. What could I say? Should I simply listen? I decided that I needed to get humble with my advice and just start shutting up and listening and staying close.
Crystal is My Family
I am flying up North to see Crystal in the next few weeks. I am glad to have a second chance to love her. I also know I am not in charge of her life and her destiny. But I wanted to share Crystal’s story for those out there suffering these special need issues as well. It is harder to be a special needs adult than a child. It is hard to “age out” and receive less assistance for your own limitations. It is hard to get compassion as an adult in general. You are supposed to be “educated, trained and civilized” and ready to “work”. So what does that mean when as a special needs adult all those things are that much harder to achieve?
I do not know any of the answers to this and I am truly humbled by this entire experience. But what I feel most is that Crystal is my family, I love her, and I need to be one of those that advocates for her as well. Crystal sat for days holding my second son’s Brody’s hand because that is what he liked as a tiny baby, a quiet soft hand to hold. And so now, Crystal needs her hand held a little. I can do that. And I can write this story for her and other special needs adults in the recent transition from childhood to adulthood. Aging out is not easy. It is a hard journey to passage. May all your journeys be safe and secure with your loved ones around you.