This article was published by FaithVillage.com on March 20, 2014. Faith Village has since ceased publication.
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When Debra Wallace dreamed of parenting, she imagined the United Nations convening in her kitchen. Including a passel of her own, Debra envisioned foster children careening to the table and scraping chairs on the hardwood floor, blonde curls bobbing beside black afros. She and her husband, Jason, would foster to adopt and had only one stipulation: no disabilities.
When Matthew, a partially deaf two-and-a-half-year-old, and his younger brother Christian needed a home, however, Debra and Jason jumped at the match. Debra’s proficiency in American Sign Language, along with a master’s degree in Social Work, made them a perfect fit.
Photo courtesy of Debra Wallace.
Frequent infections, with both boys screaming and pulling their ears, crowded the first six months. Jason and Debra noticed developmental delays, but blamed these on Matthew’s hearing loss and the gross neglect he had suffered. Adding to the whirlwind, two lines on a pregnancy test told of a new delegate on the way.
A Diagnosis
During one of the many ear infections, Debra recalls the doctor observing how Matthew’s “facial features seemed syndromey” and whisked them off to a geneticist. The diagnosis ex-plained Matthew’s developmental delays: Sanfilippo syndrome, a metabolic storage disease, that robs children’s ability to speak, walk, and think. For him, reaching the age of sixteen would require a miracle. Reeling from the prognosis, they collided with worse news — Christian, the healthy eighteen-month-old, who had already captured their hearts, shared the diagnosis with his brother.
A Decision
Shocked with these terminal diagnoses six months into fostering, and with their own biological child on the way, Jason and Debra did the unthinkable — they kept walking forward. “Any kid that came into our home, we wouldn’t send away,” Debra says, looking back on those months. “We were pretty loyal in that respect. We never talked about giving up and not adopting.”
The Wallaces’ decision amazed their friends. At times people treated them like humanitarian superstars, behavior which continues to perplex Debra. “I made a commitment,” she says, “and I feel like I just did the next thing. I don’t feel like it was some heroic act.”
As the boys grew and regressed, the terrible twos stretched on for years. Losing the ability to communicate, they applied their vocal cords to screaming. Living with them, Debra recalls, “was like having a perpetual toddler times twenty. ADD, hyperactive, and toddler, all combined, all the time, without rest.”
Realizing her need for a support network, Debra attended MOPS (Mothers of Preschool-ers), but felt alienated. The other moms misunderstood the boys’ behavior and attributed it to bad parenting. Even well meaning people feared that the boys might accidentally hurt their own children. “I couldn’t form relationships with other moms,” Debra says. “I was scared of how I would feel if I went over to their house and they did not have enough baby gates.” Sanfilippo complicated everything.
Doubling Down
Meanwhile, Debra’s fighter instincts allied against the enemy. “I was not going to take this lying down.” Jason and Debra exhausted themselves on new drug regimens, orthotics, CPAP machines, supplements, and endless appointments. They spent years “chasing and firing therapists and doctors,” grasping onto the hope that something could fix their boys.
The medical providers, equipped with never-admit-defeat mindsets, fed that hope. Slowly, though, Sanfilippo took over and when it did the Wallaces felt misled. The professionals’ buoyancy made it difficult for them to face reality. “That’s very hard when you are going through a phase of trying to accept it. It’s kind of like a slap in the face.”
As feeding tubes replaced eating, wheelchairs replaced legs, and blank stares replaced the spark of understanding, reality suffocated optimism and hope began to hurt. Debra recalls the overly positive school reports they received, which would praise Christian’s choices between two objects as “meaningful sixty-five percent of the time.” The couple wondered how such analyses were supposed to help. Should they ask their son who couldn’t walk, talk, or feed himself what type of formula he wanted in his tube feeds or whether they should administer the medication from a syringe or a medicine cup?
The optimism felt insensitive and irrational. For two years Jason and Debra prayed for a miracle, but God seemed to say, “No.” “There were so many dark times when I felt like I couldn’t see God working,” Debra says. “I felt abandoned. I don’t feel like I handled that well. I didn’t have a lot of patience or a lot of grace.” It only took a sock being out of place to derail her.
Often when people tried to offer encouragement, instead of helping, it hurt more. Finding Debra after church, a friend would report Christian’s “progress” in saying a certain word. “My five-year-old is losing the ability to speak,” Debra would think, “and you are excited that he said some word to you?” She knew they meant well, but faced with so much grief, nothing anyone did to help felt right. Looking back, Debra appreciates the friends and family who persevered anyway and continued to show their care and support.
As the boys’ conditions worsened, Debra needed help around the house, but she found it difficult to predict what she would need. Some days she wanted someone to wash the dishes so she could watch the kids. Other days she desperately needed someone to take the kids so she could just wash the dishes. She and Jason hired aides and nurses to supplement the help their mothers provided, but the assistance created more tension. Keeping their sanity meant sacrificing their privacy. “We needed more [personal] space, but we needed more help,” Debra recalls. Letting others help meant relinquishing some authority over their home, and the loss of privacy pained them. “It’s just so personal.”
Dark Days
In early 2013, Matthew worsened. Two subsequent bouts of pneumonia convinced the doctors that he wouldn’t survive. Jason and Debra signed the Do Not Resuscitate orders and braced themselves for his death. Both times he pulled through. The winter’s false alarms took their toll. After saying goodbye twice and preparing to bury their son, the couple felt more emotionally detached.
When Matthew’s oxygen started dropping in April, the Wallaces resisted overreacting. This had happened before. Sunday morning, April 7th, Jason and Debra attended church with their family. During the service, the nurse called. Matthew had stopped breathing. And he never took another breath.
Facing Tomorrow
Today, if you ask Debra how many children she has, she still says “six.” “Counting Matthew is for me,” she explains, even though doing so often results in having to explain his death. “Telling [people] why he died is for them,” she says, understanding the shock that people feel at her loss and their need for an explanation.
While she understands their reaction, people often misunderstand hers. They may assume that she has not gone through a healthy grieving process. But, Matthew’s death “was the closure, the bookend. I grieved for eight years. I’ve done a lot of my grief work already.” She still has dark times, though. “It depends on the day, I’m all over the map about it.” Continuing to include Matthew as one of her children allows Debra to dignify his life, not prolong the grief of his death.
When few family members attended Matthew’s memorial, Debra’s struggle with how others view her relationship to the boys deepened: “No one ever accepts them as my biological kids.” On the other hand, Debra feels unjustly honored for taking care of Matthew and Christian. “A lot of people lauded us for our decision, but that kind of bothers me, because I don’t think they would have [done so] if they were our biological children.”
Not a Hero
Debra refuses the title of “hero,” quickly pointing out her own failures and Jason’s support. She recalls a Bible verse that kept her going: “My grace is sufficient for you, for my power is made perfect in weakness” (2 Cor. 12:9, NIV). Would she do some things differently if she could? Yes. Does she feel guilty about her mistakes? No. Instead, she looks forward to seeing Matthew again. “I cannot wait to see him,” she says, “and to talk to him, in his full capacity.”
Jason and Debra continue to care for Christian and their four biological children. They still possess their foster license, saying they’re “just not ready to shut that door yet,” but Debra can’t imagine going through it all again. One thing she knows: the devastation wrecked by Sanfilippo syndrome makes her look forward to eternity, when she believes God will free Matthew and Christian from their limitations.
“I envisioned us saving a lot of these kids,” Debra says. “We were going to adopt eight or nine or ten different kids from different parents.” She thinks back on her desire to have a mini-UN around her table, and smiles. “We were going to be these superstars. I felt like God just kind of stopped us and said, ‘I don’t need you.’” But along the way, two boys did need a home, which they found with an ordinary couple who walked the extraordinary road of loving them toward eternity.
