Feeding Disorder

Hi, my name is Jillian :). I’m new to The Mighty and look forward to sharing my true… YES, it IS true, story!

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Just 5 Minutes of Peace, PleaseBy: Gail Hamblin     Here it comes. I feel the wave of stress reaching it’s apex as simultaneously my youngest is yelling from the bathroom that she needs help wiping her back end, the middle child sneezes a giant mess to which he can’t wipe because of his diminished self-help skills, the oldest needs homework help right this instant, the dog is eating someone’s brand new sneaker, the chicken cooking on the stove is burning and the hubby is nowhere to be found. These moments occur more frequently than I would like to admit.  My fists clinch and I feel all of my muscles tensing up.  Sometimes there is a loud noise emanating from my mouth or I mumble as I prioritize all the wrongs that need my attention at the same time. I know most moms know what I am talking about. But, our house is a little different. We live with therapy two hours daily, medical appointments galore, feeding disorder difficulties, Down syndrome, autism, FPIES, and a host of other diagnosis.      Some days it is all too much.  I grit my teeth, try to suck it up and move forward. I don’t have to be happy about it.  But, I have to move forward.  In these moments, I have a recurring phrase that I say to myself and I know it comes out in mumbles too.  “Just five minutes.”  Can I get just five minutes to myself of peace and perfect alignment of all things in my view? It is not much to ask I try to tell myself.  I am a good mom. But, here is the kicker ladies and gentleman: life is not fair. Life has never been fair and it never will. If it were fair, no child would have to suffer. I would not have to see my special needs mamas lose their children one by one to some disease, cold or diagnosis. I try to tell myself that I am lucky because I still have my children here with me. Who am I to complain about trials and tribulations when there are dear friends who can not hold their babies? I try not to complain but I don’t always succeed. I get through the sleepless nights of care-taking by telling myself this is temporary. This season of life will be over soon and I will miss the time they were little. So, for now, I need those five minutes every once in a while to snap me back into reality, give myself some grace and try to handle the load better the next time the wave of stress comes near. Couldn’t we all use just five minutes?

Over the past 7 seven years my life has been an onslaught of one difficult decision after another. It was this decision or that decision? Should we or shouldn’t we? At first they were simple. Quickly the complexity evolved into the profound: should we take over my mother-in-law’s affairs? Should we pursue genetic testing? Should I request a leave of absence? Should we move to Iowa? Should I resign from my teaching job? Should we leave Illinois? In all honesty, “should I become a mother” was the only question that I knew the answer to immediately.

In fact, on the day we decided to “start trying” Rich was laid off from his job. It took us several years to get pregnant. It was once we quit trying that she was gifted to us. Sophia Irene Curtis was born on August 9, 2012. A bustling 6 pounds 8 ounces, she was born every bit a diva from the moment she entered the world. Everything about the pregnancy was normal. It was the delivery that took too long. After many hours of laboring she was born via emergency c-section. She lost some of her birthweight like many breastfed newborns yet quickly overcame these challenges.

It was early on that the tremors started presenting themselves. Naive, being a new parent and new to ADULTHOOD after an extended college tenure, I had no idea that these minor “hiccups” were really foreshadowing the chaotic events which were to come. By November of 2013 life had begun its tailspin. We lost our dear Karen, followed by the first of several strokes that would knock Rich’s mom off her feet.

By January 2014 our world began spiraling out of control. Rich’s mom continued to struggle with her health, wandering outside during a polar vortex. By the grace of God and the good faith of a passerby, she was returned to her home. She reported she had simply gotten lost while trying to find her neighbor’s house. She had lived there for 42 years. The tremors continued. Our struggles with Sandy were replaced by grief after the death of my mother’s best friend, Linda.  I remember traveling to the funeral on, or near, Rich’s birthday. We stood in the church surrounded by hundreds of people we knew wondering, “can it get any crazier?”

It did. We returned home to sickness and pneumonia. See children, once ill with an upper respiratory infection, are more prone to repeat illness. For Sophia that was the case. she was my chronically sick with a cold child. In particular since I taught middle school and she attended daycare full time. It was during this time I learned my love of protocols and checklists putting them in play when the slightest symptom would present itself.

While she never required hospitalization, she did have pneumonia three times before the age of two. After a series of allergy tests and visits to the pulmonologist she was diagnosed with “Reactive Airway Disease” and given an asthma action plan. We grew complacent, we had our routine down pat. Everyone changes clothes upon arriving home. Followed by showers, immediately don pajamas and eat dinner in them. The cool mist humidifier was set, vapor rub applied to neck, chest and feet while the head of the bed was elevated to eliminate postnasal drip. Follow this checklist along with nebulizers containing albuterol and budesonide every 4-6 hours until oxygen levels would improve. This was our life during the winter months. We thought it was normal. Everyone with a small child and an ill, elderly mother lives like this.

We had no idea the number of truly life changing decisions that would come in the months that followed. As Sophia grew and thrived, Sandy’s health began a downward trend. Months after announcing my pregnancy with Charlie we would learn of her first of several necessary, medical procedures. During these months, filled with trips to the hospital, Sophia was there, a small silent witness to all the events, conversations and decisions that transpired. She was there when I took Sandy to the emergency room because she was having a heart attack. She has always been there to witness it first hand. She continues to witness it now with her grandmother and brother.

When I speak with people regarding my decision to leave teaching, it is often assumed it was to be a better advocate for Charlie. Believe me that did drive a part of it. The larger, greater influence were the needs of my daughter. See as the sibling of a medically complex child, she is often asked to wait, be patient, please just compromise, usually resulting in her settling for less. She is usually the subject of disappointment, at the fault of no one, yet resulting because most situations are extremely overwhelming for her little brother.

Sophia is the sibling of a disabled child, resulting in her own set of incredibly complex needs and some very real social anxiety. When making “the decision” it wasn’t the decision to be a teacher or an advocate. I wasn’t choosing between myself and them. I was choosing to be a mother to both my children. I choose to fill both their needs because being a medically complex child with a feeding disorder is tough. Equally challenging is being the typically developing sister of a medically complex child. A wise friend once told me that “you can only be their mother at this age once.” I will always be a teacher, but I can only be their mother, filling their needs this once. It was the decision to be an amazing mother to both my children, that is what I chose.