In our March edition of our preemie parent newsletter we learned about lovely Ava Elizabeth Moore, a former 30-weeker. Her mother Rhonda shares with us an update on Ava’s journey along with some photos from NICU to now.
by Rhonda Gobel, Ava’s Mom:
I once believed that character was determined by how well a person faces adversity. Some step into denial and stay for good. Others race to acceptance in high gear only to sputter out early in the fight. Five years ago I thought the only choice was to either step up and never, ever fall back or bow out and hide. No one is perfect and living through an extended medical crisis shows us quickly where our strengths lie. I like to think of myself as pretty resilient. Prior to Ava, I would rarely sweat the small stuff and if I could find a sliver of hope to hitch my wagon to, I would.
Five years ago I realized a person is only as strong as the moment allows. HELLP Syndrome as my humble teacher, taught me I can’t always be in control and to save Ava meant saving me. As a mother, the guilt of preterm delivery is a hard one to work through and come to terms with. Your needs are paramount and for so many of us that’s contrary to what we think is good parenting; children first, parents second.
Prematurity weighs on you with a heaviness impossible to wrap your arms around. What I grudgingly regard as “prematurity fall out” has brought me to my knees more times than I care to remember. Watching Ava struggle to live, meet goals and developmental milestones others take for granted was more than I had bargained for and certainly more than I wanted for her.
I could recount the ridiculous trials of the NICU in my sleep: ROP, anemia requiring multiple transfusions, NEC scare, the ever present reflux, ventilator dependent and countless failed attempts to wean, a PDA refusing to close and a subtle new murmur. We can all recount the endless bradys and desats. Who can forget 101 ways to stimulate your preterm infant to breathe?
I could write a book exclusively on post NICU challenges of Failure to Thrive and feeling like an incompetent ditz because your darling refuses to gain weight. I can write an addendum on oral aversions and feeding therapy gone awry. I could swaddle your older, sensory challenged child in my sleep and give you a thousand reasons why “just” sensory issues and speech delays do not put your child on the spectrum but still require consideration, therapy, a different approach to life. I could quote statistics on the incidence of specific learning disabilities, autism, ADHD, and global developmental delay by gestation at birth for preterm infants with startling accuracy. If I had the time I would explain the difference between competent and concerned professionals and those running on autopilot. I would highlight faulty reasoning and arrogance of providers with a postscript on patient rights and advocacy. I could tell you five years later I am still unraveling the depth of my own character day by day with Ava as my guide.
Five years ago I found myself begging for Ava’s life. I asked only for the chance to love and keep her safe. As the years of therapy and medical mayhem became second nature my hopes for Ava grew little by little. I allowed myself to see the promise she inspired and not just the developmental milestones I hoped she would reach. Not only did I want her to walk but also I hoped she might run. When we sat day after day in laboriously slow and monotonous feeding therapy I hoped she might someday enjoy a cupcake, just one small bite on her birthday.
As the list of disorders and specialists grew someone forgot to tell Ava. They forgot to remind her of her right-sided hemiplegia because she is right handed with stellar fine motor skills. She understands she tires easily but could care less what cerebral palsy means. Tiring easily means she’s carried when everyone else is told to step lively and stop complaining. She finds it hilarious when we discuss feeding therapy and sensory work because to her it’s now her chance to try new foods and talk me into cupcakes at the bakery.
I suppose the greatest testament to her growth came just last week when she was officially accepted into her siblings’ private school. Ava was drilled by the Head of School as well as the Director of Admissions and held to the same set of standards as every other rising four year old. When I received the call officially accepting Ava I burst into tears. Here was this little girl with an alphabet soup of delays and disability proving her ability to learn and grow like everyone else. In true Ava fashion she put her little hands on her hips, rolled her eyes and asked if I really thought she wouldn’t get in. And to think five years ago I was so worried.
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