Having a medically-fragile baby changed my life. My daughter, Avery, has changed the way I see the world, she changed how I fit in it.
I have always been adventurous, maybe even reckless at times. Having kids tamed my creative personality a bit, but I remained mostly messy and nonchalant until the birth of my third baby, Avery.
Overnight, I developed severe OCD tendencies. I became a neat freak and refused to leave the house without completing an extensive checklist, packing all the necessary medical equipment, and then some! The skin on my hands became raw and it bled as I scrubbed everything in sight.
Everything about motherhood became suddenly complicated, and I learned to cope through control.
G-tube extensions, suction catheters, trach ties, and ventilator equipment began pouring into my house, and as it did, my sense of adventure began pouring out of my heart, never to return again (or so I thought).
I thought that if I stayed where things were safe and comfortable, no harm could come to my family. If I stayed in complete control, I could hold everything together. But I have learned that no amount of control could save us from everything.
I couldn’t control the post-surgical debris that became trapped in Avery’s VP shunt catheter, causing life-threatening, optic-nerve-damaging, brain-altering hydrocephalus. I couldn’t clean enough to settle her stomach so that she would stop vomiting – as she did, all day, every day, for over two years.
I could control a lot, but what I couldn’t control I made up for by staying in my comfort zone, as much as possible.
For 2.5 years, I did not take Avery outside my home for anything other than doctor’s appointments and very rare meet-ups with family. Our answer to every invitation was “no.”
Even up until a month ago, my special-needs toddler, who is rapidly approaching three years old, had never even sat in a high chair at a restaurant. There were germs! She could get sick! People might stare! She has a feeding tube- so it’s not like she could eat the food anyway!
I couldn’t save her from everything, but I could keep her home and that’s exactly what I did.
Last year for Christmas, we decided to join my family at the beach for a few days. It was Avery’s first trip away from home, and I was incredibly nervous, but she had been healthy lately. We knew if something happened, we were only a couple of hours away from the medical specialists who care for her (Avery’s medical needs are so complicated that there are only a few medical centers in the nation who can provide her level of care).
The trip was successful, yet exhausting, and I felt cautiously optimistic that we might try another trip again the following year.
However, as summer neared and Avery thrived, I began thinking about visiting my husband’s family in Ohio. The eight-hour drive was incredibly daunting, but I couldn’t shake the feeling that we were meant to make that trip, one we had not made in three years. But even Avery’s doctors encouraged the idea!
So I began planning weeks in advance, running through scenarios in my mind, and making all the checklists. When the time came, I couldn’t believe that I was loading suitcases full of medical equipment for my baby into our family van.
I repeatedly asked my husband, “Am I crazy for thinking we can do this?!” Planning and executing something “out of the box” felt reckless and so out of character for me, a complete control freak. And being so far from Avery’s doctors felt incredibly risky.
The trip was a smashing success; it was truly the highlight of our summer. It was indeed hard and exhausting, as I had anticipated, but more doable and enjoyable than I had envisioned.
Avery made immense strides on that trip as she easily adapted to new environments and had more opportunity than usual to behave like the “average” baby would. She rode a four-wheeler (with her grandfather) for the first time, ate her own ice-cream cone, fed giraffes, rode in the back of a truck, sat on a horse, petted a dog, and slept in a port-a-crib.
I began to recognize that some of my control was actually limiting Avery! Sometimes she NEEDS more interaction and experience than protection from germs (I may change my tune when flu season comes).
Since she has a perfectly functioning immune system, trips to the park, brunch on the weekend, and even trips to the beach are all perfectly safe activities that she needs from time-to-time.
I had been so afraid of the world hurting Avery, that I forgot about my own wings.
Spreading my wings over the summer reminded me that sometimes all we need to break out of our depressing, mundane boxes is a little walk on the wild side (a carefully planned, ok’d-by-doctors kind of wild side!).
Sadly, though, a month after we returned home from our trip to Ohio, my father-in-law was killed by a drunk driver. Once the initial shock and grief subsided, I became so intensely grateful for our trip to visit my in-laws this summer. That trip will be so deeply treasured by my family for the rest of our lives.
My instincts told me it was safe to try something different, and because of that, we have those precious, last memories of my father-in-law.
Don’t let your limitations in life make you miss out on experiencing all the good that’s out there in the world. Don’t let your limitations keep you from friends and family – people are always worth the extra effort and every second you have left with them is SO precious!
Adventures are still out there.
They may require a little more thought and planning for your family than the average family, but you can still have fun, even with a suction machine or feeding pump in hand!
So try something new.
Test the waters.
Go to the park.
Schedule a play date (and lather yourself and your kids with hand sanitizer when you leave, if you must!)
Meet some friends for brunch.
You may be surprised by how adaptable you still are. You may be surprised by the adventurous soul that’s still inside you.
– Meg Apperson, Springible Contributor
Read more of Meg’s story here!