Writing our Journey: Poems and Essays by Family Caregivers
The Elizabeth M. Boggs Center on Developmental Disabilities
UMDNJ-Robert Wood Johnson Medical School
Words join us, sustain us, complete us. For my son Eric and me, it’s been a slow
journey to build such a bond with words. Let me explain.
When I was a child I loved dolls, real baby dolls not fake Barbie dolls. I played
with baby dolls long after my friends had stopped. In fact, there was only one
thing I loved more than a baby doll, and that was a real baby. So, I babysat as
much as possible, always loving my time with babies. I could comfort really fussy
babies and always felt pure joy being with them. I couldn’t wait to grow up, get
married and have four boys whom I would love and cuddle. My boys would love
me and know me as their Mom. To be a Mom, that was my dream.
Many years later I was elated when I gave birth to Eric, my first baby. I can still
hear the Doctor pronouncing that I had given birth to a beautiful baby boy. He
was the best Christmas present I had ever received. I couldn’t wait to snuggle
MY baby boy. I was ready for the rest of my dream to unfold.
The following days unfolded, but not as I had envisioned. My baby was in the
NICU; he was very sick. He was miserable, rarely taking a break from crying.
The bleak situation was compounded by the fact that I was not allowed to pick
him up, I was not permitted to cuddle my baby! The first weeks with Eric were
reduced to hovering over him in an incubator and stroking him with a single
The feeling that my dream was turning into a nightmare was confirmed when I
looked up one day to see a sign above my baby which read “irritable”. He was
near impossible to comfort, but at the time I didn’t know that babies with
developmental disabilities, specifically cereal palsy, are often labeled “irritable” as
they are difficult to comfort. All I knew was I felt awful for my tiny baby. While
Eric cried, I was beginning to wonder if I was already a failure as a Mother. Why
couldn’t I comfort him? What was wrong with me? Why was I being rejected by
Weeks later when my baby finally came home, my childhood vision of
motherhood seemed even more elusive. There was no snuggling and very few
quiet, bonding moments. Not with my baby. The truth was that my son was
irritable, really irritable. He insisted on being walked while being held in the
“football” hold. When not moving and facing the ground, he cried. And cried.
And cried. He was a poor sleeper, seemingly never sleeping soundly unless it
was time for his every-three-hour forced feedings and blood sugar checks.
Exhausted and heart broken, every three hours my husband or I would return to
our new routine: warm the milk, put on upbeat music, began the hour plus effort
to get Eric to drink a few cc’s of milk, listen to our baby scream as we checked
his blood sugar and then back to “walking the boards” with our now wide awake
and most unhappy baby. So it went, in three hour increments day after day. It
felt like each time we finally got Eric calm or asleep it was time to start with the
force feedings again…
I had so many hours to contemplate my inability to comfort my son. The son I
had dreamed of all my life. I had gotten exactly what I had dreamed for, except I
didn’t. My baby was different. My baby was sick. My baby was hard. My baby
seemed to reject my efforts to comfort him. I was disappointed, I was profoundly
sad. How could it be that after all the years of practice, I couldn’t make my own
son happy? What was I doing wrong?
My perceived rejection by my son went to my heart, to my soul. After months of
being home with Eric I couldn’t take it any more. Instead of taking a one year
maternity leave as planned, I returned to my career after only six (long) months.
I couldn’t stay home, I was a failure there. I was depressed. I needed to get out.
I needed to feel successful again at something, anything.
It was decided my husband, Bill, would take a paternity leave and care for Eric.
Bill was up for the challenge and didn’t take Eric’s behavior personally. Bill never
felt rejected by Eric. Soon my husband decided to quit his job, and while
maintaining his role as primary parent, he returned to school to become a
Physical Therapist. Upon graduation he obtained a part-time job in a school
working with children with special needs.
So, while my husband “held down the fort” and began a career in the special
needs world, I dug deeper in a different direction, into a demanding corporate
career. I was having great success at work and my pay check reflected that, but,
it came at a price. I often came home tired and impatient and that combined with
my very demanding and hard to comfort son, didn’t bring out the best of either
one of us.
I was rarely the preferred parent, and that stung. Intellectually I understood why
Eric was more comfortable with my husband, because they spent a great deal of
time together. However, the pain of his preference went through my heart to my
soul. I continued to feel rejection from the baby boy I had dreamed of all my life.
As the years passed Eric and I forged a strong bond. It was not always pretty,
but our love for each other was understood. Thankfully, all those feelings of
rejection have begun to fade. Things started to really change when I retired from
my draining job and I began my journey of healing. With renewed energy I found
more patience for many things, most importantly my son. I no longer take his
moods so personally and our relationship has grown more positive. I take more
care to avoid his “triggers” and I no longer abruptly leave conversations when he
turns them negative. Instead of being hurt and rejected by things he says, I sit
quietly with him. I try to be present and to accept the moment as it is without
bringing in the pain, the rejection, of the past.
I have also started making a point to say ‘thank you’ to Eric at every opportunity -
when we have a good conversation or a good time together. My “thank you” is
always heartfelt. I am profoundly thankful when we are sharing a bond I know he
has with only me, his Mother. These moments are made perfect when I am
rewarded by my son saying “Wel come, Mom”. Although perhaps unintelligible to
an outsider, these words ring clear through to my heart. For they represent the
fruition of my dream, which began in childhood, of that special bond a mother
feels with her child.
© Lisa N.