When Giving Up is Not an Option
This story is a sad one, but the family is a strong one. And there are a couple of lessons learned. The first one is that bad things can happen at any time when you may not think you’re ready to handle them. The second thing is there are people out there who are ready to help in a very personal time of need. You just need to find them.
Crysta Evans was born 20 years ago with spina bifida. For her first 16 years, she relied on a wheelchair to stay mobile but was your typical teenager looking forward to a life where she could have more independence from her family and start to learn skills, she’d need to embrace her life.
Crysta’s mom, Dawn Evans, was ready and happy to help her grow into a beautiful young woman with the world at her feet. But, the family was about to suffer a huge setback.
In 2016, Crysta would enter a children’s hospital for a routine procedure as a fun-loving 16-year-old who loved fashion and baking and would leave unconscious in a coma. Because of her spina bifida, she was born with hydrocephalus (swelling in the brain) and had to have a shunt to help the brain fluid drain. At 16, Crysta was growing and getting bigger, so it was time for a new shunt.
Dawn says that after two broken shunts were put in at the time of the surgery and too much time, her daughter was left in a coma. The only suggestion from the hospital was to begin palliative, end of life, care.
Dawn and her husband only agreed to move their child to ICU and after three months, were told they must move her to an institution because Crysta was not waking up. Again, the family held fast in faith and wandered in a sea of uncertainty. They were told Crysta’s brainstem, which is in charge of all the functions a body needs to stay alive, like breathing air, digesting food, and circulating blood, was beyond repair.
After three months the family was forced to a rehab facility where the family could learn to change out the nasogastric (NG) tube used for the delivery of calories and medicine directly to the stomach and her trach which was put in to help her breathe. Three days before moving from the hospital to the rehab, Crysta moved a finger.
She then moved her head. With these two conscious movements, Crysta was able to qualify for physical therapy. It appeared she was going to move other parts of her body, so Crysta moved home. In a coma, with tubes and intricate equipment keeping her alive. The family persevered and learned that nothing can prepare you for constant caregiving.
Dawn remembers that what she was told at the hospital was coming true. It was hard. It was almost impossible. Taking care of Crysta was exhausting and taking up all her energy. But still, with two caregivers and an RN, they soldiered on.
Dawn says the RN that was assigned to the family was terrified. She was young and inexperienced and was not equipped to handle the clearing of the tubes and the hands-on job she was tasked with.
They seemingly had nowhere to turn for help. And calling 911 was sometimes their only option. Dawn says she once called 911 twenty times in a month.
With nowhere to turn, endless financial challenges, and only prayers to guide them, they moved to Austin, Texas, from a more rural area hoping for some relief and guidance.
“When parents are beat up,” explains Dawn, “when they are working and then have a tragedy, it just becomes about finding time when you can get your breath,” she explains. “You take the bad and hope there is some good somewhere out there.”
And some good was out there. They just had to keep searching.
After going through nurse after nurse, Dawn heard about MGA from a friend. She was looking for a home health care organization that would be there for her, one that was reliable, honest, and a good communicator. She had only these very basic requirements. At the very least, she needed someone to show up. For her and for Crysta.
By this time Crysta was progressing. It was slow, it was tedious and frightening, but Crysta (who was told her case was ‘hopeless’ from a previous physical therapist, and that she would never reach any kind of goal), was actually improving. She was conscious, aware, could speak, and communicate. The family just needed some dedicated and educated help.
When Dawn met Drew Allison, Director of Operations and Administrator at MGA in Austin, Texas, she knew something was a bit different this time. Just by the way Drew paid extra attention to get the right person and make sure it was the right fit stood out to Dawn. “In fact, I had a very, ‘is this too good to be true?’ moment,” Dawn says. She held on to her old caregiver company until the day an MGA caregiver showed up.
“MGA works with me and listens,” says Dawn. “They really analyze the situation and listen to parents,” she explains. “For the first time, I was given respect and compassionate caring,” Dawn explains that caring even shows up in the minor details as far as logistics.
Drew kept in touch with Dawn–and still does–even after her case was handed off to a scheduler. And, when that scheduler got promoted, Drew came back into the picture to make sure the handoff to the new hire was seamless. Sounds like a minor thing. But, to Dawn and families like hers, it’s huge.
“I felt like I was a priority,” says Dawn. And, what’s more Crysta’s therapists are the best she’s ever had. Crysta is making her transfer goals and can now move from her chair to a bed on about 90% of her own accord. This is a milestone. She can now go on trips, and a big one was coming up.
“We’re vacationing on the beach in Galveston,” Dawn says. “It’s the first trip we’ve had in so very long.” It’s been 5 years since Dawn was told her child would never have a conversation, never recognize color, and never reach a goal to progress. And now she is getting ready to go to the beach with her family.
She is in high school—another milestone—and can stay a little longer to make up for the time she’s missed “She has conversations, she bakes with her therapists and she still loves fashion,” says Dawn.
“Finally, I got my girl back.”