Prematurity
Memories and Birthdays
When
your baby is born prematurely, birthdays can evoke complex feelings.
By Allison Martin
When your baby was born prematurely, birthdays can evoke emotional and
complex feelings. On one hand, there is the joy of having your child alive
and with you now. On the other hand is the sadness and confusion of loss
and grieve. Memories of the traumatic birth and survival in the NICU are
present in a parent's mind, whether voiced or not. Thoughts of what might
have been come closer to the surface around this time.
On the Preemie-Child
mailing list we have the chance to share our joy as our children pass
milestones and accomplishments, as well as our struggles and emotions
over the difficult issues our children may face. Birthdays and other holidays
are times when members experience this dual tug of emotions between the
past and the present. The border between our dreams and fears and our
present reality merge again on these dates.
Jacque describes how the mixture of feelings remains but the strength
of the memories may slowly recede over many years. It truly becomes more
difficult to remember how really tiny our babies were.
"Our twins were born at 29 weeks, 2 pounds 3 ounces and 2 pounds
11 ounces. I, too, was unable to see my boys for the first five days,
except one time for five minutes as they were being transferred to NICU
at another hospital. Their birthdays always brought mixed feelings...
It seems to bring back all the memories of that rough time when they
were so sick.
"But now they are 9 years old, and I notice birthdays are less
sad these days. I'm always so thankful when I look at them and see what
healthy, happy boys they are now. It's true, as so many of us say, you'd
never know they were so tiny to start with and went through so much."
Janet shares her feelings at her twin's tenth birthday.
"Ten years ago this afternoon, my sister-in-law was videotaping
their tiny, struggling bodies through the glass window of the NICU.
Today, I took pictures of Jacob and his friends rolling and throwing
bowling balls down the alley lanes!Clint was laughing nearby.
He could not see the game due to detached retinas. He could not participate
due to severe cerebral palsy.But he could hear it, and he thought the
sound of bowling balls was as "funny" as the black-powder
cannon blasts at our town's annual Civil War battle reenactment! Just
hearing his laughter made me realize how far even Clint has come!
"Today, Jacob is little but physically strong, and as I write
this, he is bouncing his basketball out in the driveway. His mind
is bright despite a Grade 4 IVH, and he "escaped" serious
disabilities -- no shunt, no seizures, no eye-related problems, etc.
He does have common preemie problems such as hyperactivity, impulsiveness.
and social immaturity. They are both a challenge and a joy, and their
parents are just thankful it is 10 years hence!"
Michelle finds that faith and hope help her to focus on the celebratory
aspects of her daughter's birthday.
"My daughter will be 5 in October. She too is a former 27 weeker,
2 pound 3 ounces. Although I can still vividly remember the stress of
my hospitalization and then her NICU stay, especially the overwhelming
feelings of having no say whatsoever in the turn of events, I always
felt that at least God is in control, and for some reason, I recall
never having any doubt that she would not only survive but thrive.
"You are definitely NOT alone with your mixed feelings. For me,
I've always looked at Sammie's birthday as a victory day, and we celebrated
her first birthday as such... It is hard to understand the why's of
it all, but somewhere, there's hidden treasure in this preemie parenthood.
I hope we all can keep the optimism necessary to find it."
Heidi's family has a unique solution for the events to commemorate the
unique mixture of celebration and sadness for parents of preemies.
"The birth of a child is usually a time for happiness and celebration.
For us parents of preemies, it is often a time of fear and uncertainty.
I doubt many parents of preemies actually get a chance to celebrate
their child/children's birth because we were just too scared.
"For the first few years of our daughters' lives, we celebrated
both their actual birthday and their due date (which was a much happier
occasion and also a day before they were released from the hospital).
"On their real birthday, we show the girls pictures of them on
their second day. Fortunately, my father-in-law took a videotape in
the NICU. I was too sick to go see them more than about 3 minutes a
day the first few days. I think it is important for my kids to know
where they started from. It puts things into perspective."
For parents who lose a twin or triplet at or after birth, the birthday
party may be a time of bittersweet memories. Rene and Bethe describe how
they cope with these memories of loss. Rene explains,
"My girls were born at 27 weeks in 1984 - and for five years I
had a rough time on their birthday due to the loss of the triplet brother
at two weeks of age. I never could understand why their birthday rather
than the day he died bothered me so much, but it always did. That made
it hard to be excited on their "special day" each year.
"After the birth of my now 9 year old, things slowly improved.
But I still think about Daniel more on their birthday than on the day
he passed away."
Bethe describes the depth of her feelings around her son's birthday.
"I get so deep in a well around Adrian's birthday, most likely
due to the loss of his twin Harris after 28 horrible days. It's funny
(not) I am so good about it all year long, am able to discuss my situation
(if asked) with anyone without getting emotional, am so proud of my
son and his progress, but it's so deep down, this pain, than it pops
up again at birthday time. I totally lost it when they sang Happy Birthday
to my son at Charlie Rockets this past July at out little family party.
I always make his "friends" party at the end of July, to give
me time to work out of the funk."
In closing, this mixture of feelings can pervade special events, but
as as Allison explains, for parents of preemies birthdays can be also
be special times of triumph and celebration.
"We also regard Alex's birthday as the celebration of a miracle.
We feel blessed that he is alive and getting so big. For his first birthday
we had about 80 people who had supported us over the first year over
and had a barbecue in the back yard. Alex had just come off of his oxygen
in time for the occasion. It was a joyous occasion. We had him in a
big playpen in the middle of the yard so everyone could see him.
"Events other than his birthday seem to trigger the sadness and
pain we experienced at his birth. Public events in the auditorium at
school make us feel like we don't know whether to laugh or cry. We have
great pride in what he does in his unique way - his spirit always shines
through. We grieve at the gap between what 'is' and what 'might have
been'. But on birthdays, we always remember the miracle and joy of survival
over terrible odds."
For articles on preemie celebrations, visit this section: Celebrating
Prematurity
Allison Martin, MPA, is the manager
of the Comeunity and Premature Child websites. She has been involved in
support for preemie parents since the birth of her son in 1988. Allison
Martin is the listowner of Preemie Child, a support email list for parents
of older children born premature, where the discussion in this article took
place. |
