Human Interest

Mom of daughter with spina bifida: ‘Our journey was always in God’s hands’

spina bifida

A recent “Mighty Mom Monday” Facebook post by Jennifer Christie at Love Louder featured a Connecticut mom named Wendy Wheeler Garizio, who shared a reflection on her daughter’s 21st birthday.

Jennifer wrote in the post:

Often I share stories of doctors getting it wrong. Diagnosing some horrific fatal anomaly for an unborn child, mom and dad refusing abortion, the baby being born completely healthy. These are inspiring for the faith and trust people show in God. Their obedience to do what’s right and honor the life within. But what about when the doctor’s prognosis is grim.. and correct? Should we celebrate and honor those lives any less?

According to the Facebook post, Wendy told Jennifer:

Of all the people we know with spina bifida, (Allie’s) medical outcome is one of the worst. Additionally she is non verbal and developmentally delayed. But we know our journey was always in God’s hands, that she is exactly who she should be, and that we are better because God has used her to mold us. I truly love all the ‘doctors were wrong’ stories! However, even when they are right and even when things turn out worse than predicted, choosing life is God’s way & therefore the only right way.

Live Action News spoke to Wendy by phone about her daughter Allie. Wendy said that when initial prenatal testing bloodwork results came back abnormal during her third pregnancy, she and her husband Paul initially felt unconcerned, because her first two children had also had abnormal bloodwork but were born healthy. But Allie’s case was different, as followup ultrasounds showed spina bifida — the most common, permanently disabling birth defect, characterized by an exposed portion of the spinal cord. Children with spina bifida can have a wide range of outcomes in terms of functionality and cognitive ability.

Twenty-one years ago, in utero corrective surgery was very new, but Wendy chose to have the surgery, and ended up delivering Allie prematurely — a possibility after in utero surgery. For the first two to three years of Allie’s life, Wendy said she kept hoping that Allie’s ability to meet developmental milestones both physically and cognitively was just around the corner. “After all,” she said, “‘developmental delay’ implies that someone is going to catch up.” But finally, she realized that Allie’s deficits were permanent, and the grieving process began.

Wendy told Live Action News that in her experience, the grieving process has been cyclical. “I’m affected more around her fetal surgery date, her birthday, and around the birthdays of kids her same age.”

Wendy said that sometimes, people don’t know what to say around her and Allie when they learn she has spina bifida. She said that she’d rather people say something than pull away and isolate them. She sometimes hears, “Oh, I’m sorry,” from people  who hear about Allie — to which Wendy responds, “You don’t need to be sorry. She’s very happy, and she’s been a blessing to us.” Due to Allie’s low cognitive level (somewhere between 18 months and 5 years, according to testing), Allie doesn’t experience hurt due to the comments people might make.

READ: Toddler with spina bifida is mobile thanks to dad’s invention. Now, so are others.

Medically, Wendy is Allie’s primary caregiver, managing her urinary catheter, her toileting, her feeding, and all of her other daily cares like getting dressed and bathing. Wendy’s entire family is trained to care for Allie. Wendy understands that the world considers children with special needs a ‘burden’ because society views happiness as “Disney-like entertainment and constant pleasure” — and therefore believes parents of these children can never be happy. Yet this isn’t the case for her family.

Wendy admitted that while the divorce rate in the special needs community is very high due to caregiver strain and many other factors, her family has thrived by teaching everyone to pitch in and to be compassionate. Because the whole family believes that their primary purpose in life is to love and serve God, and believes that He planned each member of their family, some of the difficulties they go through to help Allie (trying experimental therapies/medicines) is relieved. This mindset acknowledges that each member of the family is important and unrepeatable, not just Allie.

Asked what advice she’d share with parents afraid after a prenatal diagnosis, Wendy responded, “There are no guarantees that any one of us won’t be a position of total dependence someday due to an accident, illness, or something else. In the end, it’s just your kid. You’ll learn to focus less on the medical issues. You’re going to love this child.”

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