By Joel Brens
I think it's fair to assume that every parent has had advice given to
them by people they don't know. At least a few times. Everyone seems
to have some sound advice to lend, whether it's warranted or not. As a
parent of a preemie, emotions run rampant. It's easy to be consumed by
what others think. It creates additional stress, and most people don't
take that into consideration when making observations and comments.
be fair, before I experienced becoming a parent, moreover of a NICU
baby, I would look in curiosity at children that looked different. I
would think "Wow that baby is tiny" or "I wonder what that machine
does". I was more curios than anything, but it wasn't until our 7 week
preemie was born that I started to consider how the parents felt. How
whenever they are out in public they are well aware of all the glances
people shoot. It's a tough spot to be in.
I remember the
first few times my wife and I brought Jayden out in public. On at least
a few occasions complete strangers would come by and ask how old our
son was. When they were surprised to hear he was pushing three months
they said "Wow he's a little guy!". I almost felt like I had to explain
myself, as if I was justifying the circumstances that led to our son
coming pre-term. It was irritating.
There were other
times people would comment on what I was doing. I had someone tell me
to stop patting my son's back like that if I wanted him to sleep. What I
wanted to say was "I'm sorry we must not have met. You must be my
son's full time nanny. Apparently a few sleepless nights using trail
and error and finding this routine to calm him is completely useless."
Instead I took the high road and explained it seemed to work great for
him. Truth be told the only person I will take advice/criticism from,
outside of other NICU parents, is my mom. It may be in one ear, out the
other but she is partially responsible for my creation. She has earned
Jayden managed to gain weight at a furious
pace, so by the time he was six months the questions about his size
slowed down. But easily the most frustrating thing I hear from people
is "Don't worry, your son will be fine" in response to a couple of
things. First one is regarding illness. We were adamant in his first
year to steer him clear of germs whenever possible. If you were sick,
even the sniffles, you weren't coming by Jayden. Period. The idea that
germs would help my son fight off future infections fell on deaf ears.
My father lost his battle due to complications of myeloma stemming from
a compromised immune system. Rolling the dice with our son was not an
option. Didn't like the feeling of people being upset with us. But I
don't regret the decisions we made.
The second, and most
frustrating instance when someone tells me to "Not worry, he will be
fine" in regards to my son's development. What they cannot comprehend
is that my son's development consumes me. I'm sure other preemie
parents can relate to the feeling. I worry about it every night. Every.
Single. Night. From the time he was born to his first night home to
today. Is he breathing? When will he roll over? When will he sit up?
When will he start crawling? Pulling himself up? Walking? Talking?
Telling me to not worry trivializes the day by day journey you take
when having a NICU baby. We discussed a growing concern with Jayden's
speech development and got Early Intervention involved. They place him
developmentally at a baby nearly a year behind. Thank God we looked
into it and didn't wait till he was three, when EI couldn't do anything
to help. Now he can get the help he needs and he will be in better
shape when he starts schooling.
Being a parent is no easy
task. As the parent of a preemie baby, all I ask is that you be aware
of the sensitivity involved in the day to day struggles we face. Think
about what you are saying beforehand and consider that while your
intentions may be good the message may not be perceived that way.
Proud parent of a preemie