There’s this moment that happens to me quite often–I’ll be watching my little girl just being (nothing particularly special, just going about her day) and, suddenly, it’s all I can do to hold back the tears of joy. My heart swells with pride as flashbacks of old memories play through my mind. There are seemingly typical things she’s able to do that other parents no longer notice, let alone appreciate, in their children. McLaine has not always possessed the ability to do these typical, everyday things. In fact, many of the skills she’s now acquired are things no one was fully sure she’d ever do. Therefore, nothing is taken for granted in our world. 

When she was a baby/toddler, I was holding back tears as well, but they were not the joyful kind. At birth, she struggled to eat and they swept her off to the NICU. My brand new baby wasn’t able to be with me, and spent ten long days in a hospital alone. When I’d crash into my bed after a long day at the hospital, I sobbed tears of agony over the empty bassinet beside me. She also had respiratory issues and we were immediately referred to a pulmonologist. After her first appointment, I remember crying hysterically in my car in the parking garage knowing that my child was already facing a procedure under sedation at less than a month old. At four months, my world fell apart when her doctor wanted to refer us out to genetics and neurology to pursue a diagnosis. In my haze, I heard the words hypotonia and developmental delay. It was then that I knew none of this was going away. The realization that these were not minor birth issues that would be outgrown brought on a deluge of tears that lasted longer than I thought possible. 

Fear ruled my life for a couple of years with grief riding sidecar. We were seeing 3 therapists per week, the number of specialists we visited only grew, and a feeding tube became part of our lives. It seemed like one step forward and two steps back. At the age of two, McLaine still wasn’t walking or talking. What kind of life would she have? Would she be happy? Would she ever be independent? Selfishly, I also wondered what my life would be like. Would I always be running from doctor to doctor? Would I have a forever baby? Would the rest of my life be consumed in fear for my child? Wallowing in fear and grief was both daunting and exhausting.

One day it sunk in that the bad feelings no longer ruled my life. The change must have been gradual, but I was too busy reveling in McLaine’s accomplishments and happy, sassy spirit to notice. She’s six years old and she’s walking now–WALKING, y’all!! She gets more confident every single day. At her latest IEP meeting, I learned that she can identify many shapes and colors. She is still non-verbal so I had no idea she knew those things! She has defied the odds. I can’t say that I’m never sad or fearful any more, but for the most part, there’s just no real reason to be. We’ve stared down some scary stuff together, and come out on the other side like champs. She likely won’t ever be fully independent, but that no longer seems like the devastating ending I once envisioned. 

In some ways, I feel like I need to apologize to her for wasting her infancy and toddlerhood on grief, but how could I have known how great our life would turn out to be?