Stories From the Heart: Baptism into Disability

Immersion – maybe you’ve witnessed people being baptized in a river? They go to the water’s edge anticipating the dunking but also feeling some trepidation about the process.  I think, most of all, they are looking forward to the time beyond the ceremony when the new life conferred by the baptismal experience is part of their everyday life. Now, picture this in your mind:  You’re walking into the water, taking a deep breath, going under, sinking down, feeling the cold water all around, awareness of needing to come up for air, the pressure increasing, coming to the surface, sputtering…sputtering.…a new life.

My husband and I talked about events our family would share after the new baby joined her two-year-old sister, Alissa.  We often restated to each other that the only thing we really cared about was having a normal healthy baby.  But with Heather’s birth those dreams were shattered.

For most families, the doctor is the messenger that turns their dreams into a different reality.  The morning after her birth, our pediatrician came to see me and abruptly announced, “Your baby has Down syndrome.”  I’m sure he said more; I just don’t remember any words past that point.

The stilted movement of my legs walked me down to the intensive care nursery where this newborn lay in a small plastic bassinette.  She looked so frail and tiny, a scrawny old-lady visage with a wire taped to the top of her bare head. Certainly not the cuddly bundle I had been anticipating.  The nurses found a rocking chair for me, gave me a sterile gown, and put this Cabbage Patch-sized babe in my arms.  I started rocking.

Numbness — frozen without the sensation of being cold — is how I remember that moment.  I was hanging immobile underwater where sounds are muted and perceptions altered.  Bodies moved around me in slow motion while words spoken to me were garbled, unintelligible.  In that short moment that seemed unending, I could not breathe.  Where was the air?

A day later, with empty arms and a heart more than heavy enough to make up for the weight of the missing baby, I left the hospital.  Heather was too frail at 4 lbs., 6 oz. to leave the nursery.  At home, the numbness dissipated and as I surfaced momentarily for that breath of air, the force of my shocking baptism into the world of disability hit me:  I was faced with unknown circumstances as this was my baptism.

The receding numbness was quickly replaced by a tsunami of emotions; overwhelming, uncontrollable, soaking.  I sought refuge by standing in the shower and crying, but even there I fought the sensation of being enveloped in the gloomy darkness of continually being dunked under cold water.  I longed for relief from the gasping, never coming above the surface long enough to take a deep breath of life-giving air.

As her medical conditions became known; a missing valve in her heart, poor lung development, no suck reflex, worrisome signs of pulmonary hypertension: ugly thoughts came, “Maybe she won’t live, maybe we won’t have to deal with this.”

There were moments in those first weeks that provoked me into pulling that much needed oxygen into my lungs.  Heather’s sister and cousins came to visit her at the hospital.  I observed that they were just kids holding a new baby, a little overwhelmed with the monitors, but not at all concerned with the thing that was uppermost in my mind:  this baby has Down syndrome.

A neighbor ran into me while I was taking a morning walk.  “Congratulations,” she said, “I hear you have a new baby girl.”  Another neighbor delivered a teddy bear cake frosted in chocolate icing with pink lettering, “Welcome Heather.”  Somewhere, deep inside of me, a thought bubbled up, “This is a new life, certainly a cause for celebration.”  Sudden inhalation occurred as I saw these moments in contrast with the tears, sympathy-laden hugs and condolences our family had been receiving.  Would these life-giving moments ever become the predominant ones?

As Heather slowly gained weight, the time came for her to come home.  And although it was a relief to have this baby at home, it came with the price of the incredible stress of medical fragility. Different medications that needed to be administered at varying hours of the day and night, a heart monitor and oxygen tank, constant oversight of special formulas, and numerous doctor appointments.  She also came home with the scepter of impending surgery to create the missing heart valve.  That surgery, we were told, would have to wait until she gained some weight or until her lungs were no longer safely able to process the back slosh of blood caused by her missing valve, whichever came first.

I went back to numb, suspended-in-water actions to get through the day.  I garnered moments of concentrated energy which I used to focus on keeping this baby alive until she had to have surgery.  And I chose to put facing her disability on hold until that point.

On a visit to the cardiologist in mid-January, we were informed that her condition was worsening and the surgery needed to be performed within the next week.  She was only two months old and weighed just under six pounds.  We had anticipated this day but had not expected it to happen so quickly.  We all survived that day of surgery.  I wish the experience itself and the seven-week long hospital interlude were as effortless as that sentence.

After Heather’s successful surgery, I was struck with the concrete knowledge of her permanent existence in our lives.  I needed to move on and accept this tiny thing as more than a recovering patient.  It was time for me to head out of that river and onto the dry land with the baptism experience itself behind me, to take charge of my feelings and emotions and to acknowledge the existence of her disability and its long-term significance.

Heather’s healing from her surgery was excruciatingly slow.  Our family began showing the strain of weeks of multiple daily trips to the hospital sometimes punctuated by daylong sojourns there with Alissa in tow.  Her release from the hospital was predicated by her ability to suck down a prescribed amount of formula in a 24-hour period.  For over a week, I worked single-mindedly at getting her to consume the allotted amount.  At the end of that week, her chart disappointingly showed only half the amount doctors had deemed necessary.  I began to doubt the nursing staff’s commitment in energy, patience and time in getting Heather to suckle her bottle while I was not present.  I envisioned the weeks stretching to months and suddenly I knew that this was not acceptable.  In a moment of insight, I sensed what she needed in order to achieve healing, over and above sustenance, was the nurturing environment of home!

The doctors, however, weren’t going to deviate from their consumption benchmark.  I crafted a strategy that I’m not proud of but it got the desired result.  Over the course of several days, when no medical personnel were in sight, I surreptitiously poured increasing amounts of her formula down the sink.  The charts reflected the desired increase in her intake.

I then called a meeting with her doctors and, with heart pounding, gave an impassioned all-in-one-breath speech asserting that there would be much more time for me to spend coaxing her to eat if I weren’t spending so much time traveling back and forth to the hospital, that the atmosphere at home would be more conducive to eating, and the family would certainly be less stressed.  “And,” I added, “have you noticed that she is already eating more every day?”  It worked!  The next morning we triumphantly headed home!

That incident marked the beginning of my ardent and ongoing advocacy for Heather.  My feet were firmly planted on the shore as I came to terms with the reality of life after baptism.  No one could give me back that child of my dreams.  With the acknowledgement of this, I moved beyond the initial phase of almost paralyzing grief.  As I continued to help my child (and consequently myself) there came the ability to begin to enjoy a new life.  I can breathe.  I have been baptized.

By Dianne McNamara

Dianne McNamara is the proud mother of two young adults: Alissa and Heather.  She is a passionate advocate for people with disabilities and has spent countless hours advocating for inclusion for her daughter and others.  She is the project coordinator for Parent to Parent of Colorado, a statewide parent matching and support organization for parents of children with disabilities.

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

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