Three years ago, I was a stay-at-home mom, expecting my third baby and supporting my military man from the home front. I ran a small blog (primarily for the sake of displaying unlimited photos of my children), home educated my oldest, and tried keeping up with my middle child, who has an attitude the size of Texas and is a mere fifteen months older than her medically fragile baby sister. Seven months into my pregnancy with our youngest, a little girl we named Avery, an ultrasound showed that something had gone terribly awry with the bones that comprised Avery’s skull. Every specialist we consulted felt that the defects were isolated and Avery would need nothing more than a surgery or two after birth, but the seconds following Avery’s delivery proved them all very, very wrong. Immediately, we realized that she was unable to breathe and one look at her severely distorted face answered so many of our questions.
Avery had a craniofacial syndrome that impacted the shape of her head, face, and brain, along with various internal anomalies, including heart and kidney defects.
Her tragically shallow midface and unique airway structure could not allow move air freely without the help of a tracheostomy (which she finally received at two months old).
We still do not know exactly what syndrome Avery has, since three rounds of genetic testing have left us empty handed. No genetic mutations have been found yet. Because of her tracheostomy and neurological struggles, she eats through a gastrostomy tube. A catheter implanted in her brain shunts obstructed cerebral spinal fluid from her brain to the open cavity in her abdomen. She relies on a ventilator at night for breathing support, since a malformation in her brain and the limited space in her skull have not allowed her brain stem to operate as it should.
Avery has endured over fifteen major surgeries, including skull and brain surgery on most occasions. As a family, everything has changed. My husband had to move to a new position to be constantly available in case Avery were to suddenly become critically ill – something we experienced monthly for her first year of life. My son had to be enrolled in school – a decision
that saved his life as we discovered during his pre-enrollment physical that he had a previously undiscovered, congenital heart condition that was causing severe wear and tear on his heart and needed an immediate, invasive surgery. My cozy home life was turned upside down as medical supplies began pouring in and daily therapy and doctor appointments began to take up most of our time. My husband and I had to be extensively trained to care for all the aspects of Avery’s medical needs and we had to rely on home health nurses to watch her during the night so we could sleep for a few hours (imagine a stranger living in your house for half of each day – it is MADDENING!)
To say that the first year of Avery life was intense would be a ridiculous understatement. Because she wasn’t able to nurse, I pumped breast milk every two hours, day and night, for 14 months to put into her feeding tube. I slept only a few hours a night, surviving on coffee and freezer meals. Avery’s health was so tenuous that she couldn’t be left in a room by herself for even a moment, so I often dragged my baby and medical supplies from room to room to do even the simplest tasks like make dinner or fold laundry. My middle child, a toddler at the time, still needed care and training like any rambunctious toddler does and my son still needed rides to and from school, help with homework and daily face time to talk through his anxiety about our highly stressful life.
My health was declining. My family was holding on for dear life and then, almost magically, at eighteen months, Avery began to improve and catch up developmentally. Our hospital appointments began to be monthly, instead of daily, and therapies only took up three days a week. We all began to breathe a little easier as Avery maintained her health for months at a time. Her medication list dwindled down to one or two meds a day and her trach, vent, and feeding tube care became second nature.
I learned at the beginning of our journey with Avery to take each day as it comes. I couldn’t worry about the future, because I didn’t have grace (or brain space) for the future. Instead of borrowing trouble about what could go wrong next, I simply addressed only the problems at hand and chose to worry about crossing the next bridge when I got to it. That doesn’t mean I am nonchalant about the decisions I make for her. Every decision is carefully weighed with what will be best for her future and her current quality of life, but I don’t live with the worry of whether she’ll go to college, be teased in high school, marry, or be able to bear children – those worries are for another day.
Through it all, we have found hope in our faith. We believe that Avery was born for a purpose. We believe that her syndrome is a key piece to her story that will change the world. We believe that it is important to share our family’s story to encourage other families facing similar crisis. We don’t believe in accidents. We believe that Avery was specifically given to our family by God to steward and love for her time on this earth, however long or short that may be.
I don’t know what the future holds. I have no idea how far into Avery’s future this syndrome will reach, but I do know that she does everything in her own time. I have to be faithful to play my part in her therapies and daily care, but ultimately, I can only follow her lead and be patient.
I’ve learned so much in the last few years. To those at beginning of their journeys of discovering a a devastating diagnosis, I say: Never underestimate the power of grief. Similar to peeling the layers off an onion, grief comes in waves. New aspects of the diagnosis will arise – even years after the initial shock – and knock you off your feet. Grieve fully, deeply and every time you reach a new “layer”. Give your spouse space to grieve and choose not to take things personally – everyone grieves in their own way, in their own time. Children will act out in grief since they often cannot verbalize or process their feelings – don’t be horrified or demoralized by their outbursts.
I would also stress the idea of self care for any caregiver. From the second Avery was born, my health has been an afterthought and I am now paying the consequences. These days, I’m on a religious supplement regimen and an intentional diet. I practice yoga daily in my living room and use a mediation app for five minutes before I go to sleep to help release any overwhelming thoughts that could threaten my sleep.
I like HUM supplements for hormone support, LoveBug probiotics for immune and digestive support, Against All Grain cookbooks by Danielle Walker for paleo recipes, 30 Days of Yoga with Adriene on YouTube for a yoga session in the comfort of my living room, and the Headspace meditation app for relaxation.) Undoing the damage of living on empty for so long will take months to reverse, but I now know the importance of caring for myself with the same diligence with which I care for Avery.
Having a special needs child has changed my life and not only in obvious ways. The richness of perspective that I now have is invaluable. The suffering and overcoming I have seen in my own child and in so many other families has moved and inspired me. Being Avery’s mother has made me a more patient, organized and empathic human being. I’m grateful to have been entrusted with my unique, imperfectly perfect family.
– Meg Apperson, Springible Contributor