Wanting to be our baby’s mama, but needing to be his caregiver
A columnist describes becoming the caregiver of her newborn after a diagnosis
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According to my late mother, I was a doting 2-year-old caregiver during her pregnancy, determined to keep her from getting hurt. I adored my parents but was unimpressed with my newborn brother, Paul. Knowing I wasn’t keen on sharing the attention, my folks deemed my offer to push baby Paul in the buggy a hopeful step forward. After Mom placed him gently in the buggy, I smiled sweetly and wheeled him around the house, collecting my baby dolls to plunk down on top of him.
That concluded my sisterly caregiving for a while, but all was not lost. Years later, I became a camp counselor and babysitter. My favorite charge, our neighbor’s baby, served as the ring bearer in my wedding five years later.
Growing up, I doted on my family’s pets and continued after marriage when my husband, Randy, brought home a guinea pig. Our assortment of pets since then have received stellar care.
Serving as a teacher, mama, and caregiver
When Randy returned to school for teacher certification, I substituted in special classes for children with myriad health conditions. Although my title was teacher, the needs frequently required a caregiver’s hand.
After attaining my own certification, I taught kindergarteners with various diagnoses. Because no student was independent in all areas, caregiving was a substantial component of my teaching duties.
Randy and I welcomed our first baby, Matthew, that first summer. Being a mama to our own baby and teaching an adorable class was busy and fun. Three summers later, our daughter, Katie, joined our family. Life was exhausting but otherwise pretty perfect.
My sixth year of teaching required me to learn skilled nursing on the fly. My class included students who were blind and deaf, tube-fed, completely nonverbal, immobile, and extremely limited cognitively. I charted seizures for one throughout the day and suctioned another every hour on some days.
A few years and a couple of moves later, Randy and I learned that a surprise baby was on the way. At birth, Jeffrey exhibited abdominal breathing that wasn’t alarming to the doctor or the nurses. Otherwise, he seemed perfect, but he harbored a surprise of his own. At 2 months, Jeffrey was diagnosed with spinal muscular atrophy (SMA) type 1. With no available treatment at the time, he likely wouldn’t make it to kindergarten.
I was already a “caregiving mama,” of course. Matthew, then 10, and Katie, 7, required caregiving to some degree. On the other hand, with Jeffrey, I subconsciously morphed into caregiver mode, scrounging online for information about SMA and alternative treatments that might derail its insidious devastation.
In short order, Jeffrey’s muscles for sucking and swallowing diminished, sending me back to the helm of a suctioning machine. I obsessed over any hint of something new, and wondered if it was related to SMA or just a normal baby issue.
Jeffrey’s struggles intensified. Foraging for crumbs of optimism while frantically searching for a miracle cure took a toll on me. I longed to be a mama, not a caregiver. When Randy and I determined that, realistically, it was time to let Jeffrey just be a baby and not a guinea pig, an oppressive weight lifted. Days later, though, we scored an opportunity to seek the expertise of an SMA-knowledgeable pulmonologist.
Unfortunately, I jumped at the chance.
A disastrous turn of events
The appointment ended abruptly and disastrously, zapping me into “super caregiver and mama bear” mode at breakneck speed. My decisions over the course of 24 hours included putting Jeffrey through the hell of an in-exsufflator experiment, followed by several episodes of respiratory arrest, a trip to the emergency room, and subsequent admittance. I requested — perhaps a bit forcefully — that the BiPAP machine used during the night be discontinued because it obviously made Jeffrey uncomfortable. Upon discharge for the lengthy ride home, the nurses mentioned a nasal cannula. I vowed to let nothing else remotely invasive near Jeffrey, so they readily fashioned a paper cup and cannula so I could administer blow-by oxygen.
Almost as soon as we arrived home, so did more medical equipment. Hospice was summoned the following day, and before any of us had recuperated from the nightmarish events, my caregiver self was preparing a morphine and suctioning schedule.
In other ways, though, I mostly returned to my mama self, albeit to a baby who was dying. Jeffrey was comfortable only on a pillow in my lap in an overstuffed chair, so that’s where we stayed. I’d already relinquished to God the overwhelming (and, in my opinion, mistaken) belief that Randy and I were responsible for curing Jeffrey. We were responsible for loving him and caring for him the best we could. God would tend to the rest.
Jeffrey let me know that he’d had enough. On Nov. 4, this mama/caregiver gave her sweet baby boy permission to go on. Two breaths later, he did just that.
Bittersweet for a caregiver, even more for a mama.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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