I can still remember the tears rolling down my cheeks after hearing the ultrasound tech say, “It’s a girl!” My husband Barry and I had two boys, ages 9 and 11, and now we were having a baby girl. We couldn’t have been more thrilled.
Molly Kate was such a sweet, laid-back baby, but as she grew, we noticed that she didn’t do things quite as quickly as her brothers had done. As the months went by, she began missing more and more milestones, and we began to realize that something else was going on. When MK was about 12 months old, an MRI and genetic blood work were ordered. The MRI revealed that MK had cerebellar hypoplasia, a condition affecting the development of the cerebellum in her brain, which helps with balance, equilibrium, muscle tone, movement, speech, and learning. Our world was turned upside down.
Looking back, that was a really tough day and a really tough year. We went from thinking that we were dealing with something temporary to knowing that it would be lifelong for her. As we began to research her condition, we saw that the effects of cerebellar hypoplasia varied widely in children. Some could walk with minimal impairment, while others used wheelchairs. Some just had speech delays, while others remained nonverbal. Cognitive levels varied all over the place. We had no idea what was in her future, but as one of her specialists said, “Molly Kate is the captain of this ship and she will show us what she can and will do as we go.” We agreed that God, as the true captain of her ship, would write her story, regardless of what the research might say. The doctor refused to put limits on her, and so did we.
As time went on, MK progressed with her therapies but continued to be severely delayed. We would celebrate every “inchstone,” as we would call them, and it was so exciting to watch her accomplish even the tiniest things. We were watching, in slow motion, as she learned to do the things that most of us take for granted. We were learning more and more that the promises in Scripture that we had heard and read all of our lives were so very true as God upheld us each step of the way.
When we first realized that MK would probably need a wheelchair, we were devastated. But by the time she was 2 ½, we were thrilled to see her with a way to get around. People couldn’t help but smile when they saw this sweet and happy little girl on wheels.
As she continued to grow, she remained nonverbal. I would sit in her room at night, with tears streaming down my face, praying that one day I would hear the word “Mama.” We were realizing, though, that this little girl who couldn’t speak a word was teaching us more than we ever dreamed we would learn.
At age 4, she finally said that beautiful word, “Mama.” Now, at age 8, with the help of a communication device, she can say hundreds of words and uses her device to memorize and quote Scripture. Still, even if she never made progress in any of her physical skills, we would love her just as much. We know that she is made in the image of God and her worth is determined by the fact that he created and loves her more than we can fathom.
Today, MK requires a lot of assistance with her daily activities, but instead of seeing it as a burden or a chore, God has opened our eyes to what a privilege it is to walk with her through each stage of life. Although the road is not always easy, the blessings of being MK’s parents far outweigh that. The joy she has brought to our family and to every person she meets is indescribable. God’s glory is put on display through what he has done and continues to do in and through her. The beautiful community of families in the disability community is something that we may have never known without her. We have learned a new level of compassion and empathy for others and of leaning into God’s promises.
This is not the way we imagined her life to look, but we stand amazed as God continues to reveal his plan. We know his story for her is so far from over, so we continue to hold onto his promises and watch his glorious unfolding. To him be the glory!
