NEWARK – Faith is a powerful thing.
After 74 surgeries in five years and number 75 in April, Ashley Shaw remains confident that there will be light at the end of the tunnel. “I just want to be a normal mother to my children,” said the 33-year-old Newark woman and married mother of three young children.
“I’ve been thinking, what’s a normal mom?” Said Shaw’s friend Cindi Land, a retired nurse who lives in Newark. “I’ve been thinking about raising my own kids, and it means taking kids to the zoo and the park and having other kids to play with. She wants to do it, but couldn’t. It really got me.”
Land started a fundraiser, Ashley Shaw Medical Expenses, on Go Fund Me to help cover the cost of the operations. There she has to see a neurosurgeon in Maryland for her complex health care and often stay for weeks.
“I know other people have tried in the past and this is the first attempt I’ve made to help her,” Land said. “COVID has been a real challenge for them as many businesses have closed. This is a drop in the bucket for an ongoing problem, but at least something.”
Five years ago Shaw was diagnosed with a Chiari malformation, in which the brain tissue extends into your spinal canal. It occurs when part of your skull is unusually small or misshapen, pressing on your brain, and pushing it down.
In addition to her original diagnosis, Ashley was diagnosed with a number of other rare diseases that resulted in over 74 surgeries in five years. Although these operations were medically necessary, they were not always without consequences. Some surgeries resulted in permanent and / or life-changing complications that not only affected her ability to work and financial support for her family, but also created challenges on a more personal level, Land said in her Facebook post.
Lately, Shaw has been grappling with a rare complication where she could not hold her head for more than a few minutes without getting physically ill, and had to resume mega doses of steroids that led to uncontrolled steroid-induced diabetes.
“Steroids are lifelong at this point,” Shaw said. “I have to inject insulin 20 to 25 times a day.” She also can’t use shunts, hence the title of her Facebook blog Shawshunt Rejection, which describes her various health experiences.
At the beginning of Ashley’s trip, she was able to see specialists in Ohio, but when her health became too complex, her care was transferred to a neurosurgeon in Maryland, eight hours from home, Land said. Due to the distance and physical limitations, a friend or family member must drive on every trip and stay with her for all visits, procedures and operations. These trips, while life-saving for Ashley, are not without financial difficulties for her family.
In addition to her already out-of-pocket medical expenses, the trips result in a number of uncovered expenses such as travel, food and accommodation as she has to stay in Maryland rather than return home so that she can be closely monitored by her surgeon for possible postoperative complications. Each of the operations requires a deposit.
Shaw spent seven years as a clinical consultant for Behavioral Health Care Partners (BHP) in Newark and loved her job. Through BHP, she was also a social worker at Heath City Schools for a year.
She and her husband Scott have three children: Kaiden, 12, Korbin, 10, and 7-year-old Gracelynn, all Newark City Schools students. “He (Scott) works for the federal government and can work from home,” said Ashley Shaw. “He’s holding the fort down when I’m gone all these weeks.”
Shaw is still trying to do things with her children, albeit in limited capacity.
“I have to wear this huge ruff,” she said. “I can only walk a quarter as far as I used to. I can’t ride a scooter with them, but I’m trying to find an alternative like walking with them while they are driving. There are times when I can’t cook dinner. ” but at least I am at home with them and can be with them. “
Ashley met Land and other friends through Narrow Road Community Church in Heath.
“We’re studying the Bible through Zoom. We invited her, and it means the world to her,” Land said. “Many people have been isolated for COVID. She has been present from her hospital bed in Maryland a few times. She is always positive when I speak to her.”
Shaw is overwhelmed that after all this time people still care.
“It leaves me speechless,” she said of Land’s fundraiser. “I’ve had various illnesses for five years. At first a lot of people brought meals and did things for us, but some of them fell off the bridge. Cindy was very empathetic and wanted to do something. It’s amazing to hold up five years later.” still people clinging to hope for me. “
She herself remains confident that there will be a positive solution to her situation.
“If you let it be depressing, it will be depressing,” Shaw said. “Living from one operation to the next is the most depressing thing. But I have a great group of doctors. Actually, they are specialists, and they are absolutely the best.
“There is a plan and a reason for what happens to me,” she added. “You can’t let anything get you down. I have a lot of trust.”
Twitter: @ noz75