Desperate Parents Stories

Carrie’s Story

When Carrie held her newborn daughter for the first time she already knew Mackenzie had Down syndrome. After finding out through an amniocentesis test, she processed the news in stages. She took some time to grieve and try to let go of her expectations. But Carrie’s faith and optimism didn’t let her stay low for long. She and her husband reached out to a couple at their church who had a child with Down syndrome. With friends to pray with and learn from, they looked forward to a future with the gift God had given them.

Faith, optimism, and a support team are great tools to start any parenting journey. They had no idea how much they were going to need them–and so much more. In her first year Mackenzie struggled to keep food down due to an esophageal stricture and GERD. For the next couple years chronic constipation would trouble her. Around five years old she began displaying inexplicably aggressive behavior. More tests revealed a thyroid issue.

And then, cancer. When she was six, Mackenzie was diagnosed with acute lymphoblastic leukemia. For the next two and a half years she suffered through Chemotherapy, gastrostomy tubes, countless blood tests, and hospital stays.

Thank God, the treatments worked. With the leukemia in remission Mackenzie’s physical health finally started feeling manageable. However, while trying to get back to normal life her behavior became problematic. More doctors, more tests, and a new list of diagnoses came in rapid succession. ADHD, ODD, hearing loss in one ear, poor spatial awareness, and scoliosis were all added to Mackenzie’s chart by the time she was ten years old.

And then, divorce. Like so many parents in prolonged, high pressure situations their marriage fell apart. Even though they were Christians, even though they both loved their daughter fiercely, the relentless stress took its toll. Carrie became Mackenzie’s primary guardian, with her ex-husband coming to visit a couple times a week.

Life didn’t stop to let Carrie mourn her marriage. Mackenzie’s medical complications continued, adding Graves’ disease when she was eleven, and a spine fusion surgery when she was twelve. The recent need to add glasses to her accessories seemed almost a relief from the severity of previous events.

How does a parent cope with that kind of onslaught? The culmination of her daughter’s medical issues brought Carrie to her knees repeatedly asking God for wisdom. She appreciated the support of friends who tried to understand, but she still felt isolated. One of her biggest sources of inspiration came from Mackenzie herself.

Despite the pain and confusion of Mackenzie's medical treatments, she held no grudges. She still loved to see her nurse and doctor friends every time they went to the hospital. Every Halloween she dressed up as her favorite oncology nurse. Most of the time she had a smile on her face and wanted everyone around her to be happy.

Seeing how her daughter could brighten lives reminded Carrie that God has a plan for everyone. Every experience each person goes through provides a unique platform to tell others about Jesus. This concept strengthened her faith. She put her family into Jesus’ hands and trusted him to use their situation for good. That doesn’t mean it was easy. Each new diagnosis brought a fresh struggle, but also an opportunity. As she practiced leaning on God through her desperation, the roots of her faith grew deeper, the knowledge that she was not alone grew stronger, and the wisdom of the Holy Spirit led her as she advocated for her child.

One particular instance happened when Mackenzie was in the hospital with leukemia. A G-Tube had been inserted. Even though they kept increasing medications and trying to push more fluids into her, she kept throwing up. A young med student said they were going to increase everything again. But Carrie couldn’t ignore the conviction that something else was wrong. As though she could picture the problem, she stood up and said she thought the balloon of the G-Tube was covering the opening of Mackenzie’s intestines. They needed to look at that first. He disagreed. She lost her cool and said she would rip the machine out of the wall if he turned it on again. He complied. And guess what? That was exactly what was causing the problem.

Carrie is not suggesting you fight with the doctors, therapists, or educators in your child’s life. She believes God gives us his Spirit when we accept him as our savior. If you’re continually praying for your child and something seems wrong, it is absolutely appropriate to say no, stop, or wait until the options can be fully vetted. Trust what you know about your child and ask the Lord for guidance.

As Carrie looks forward it’s easy to find things to worry about. But she has learned that worrying makes zero difference to the outcome. Instead, she releases fear to God so she can focus on the things she can control. She celebrates the wins–no matter how small. She prays for wisdom to raise Mackenzie, and meet her where she is in the moment. And, she encourages other families to embrace their unique normal, not the expectations of the world. She would assure you, the challenges of life can feel overwhelming, but God is there. Always.