I'll never forget the moment I was told my baby had Down
syndrome. I was sitting next to her incubator in the hospital,
holding on to her heel. I remember being pleased because her eyes
were open. She stared intently into mine. The doctor spoke and the
words 'Down syndrome' crashed over me. Suddenly I was alone without
a buoy, paddling like crazy in a choppy, new ocean.
When a parent first hears, 'your child has a disability,' it can
be shocking, saddening and scary. If you find yourself in this
situation, here are a few things you can do that might help.
1 Draw your child close.
Remember she is the same person she was before the diagnosis. "I
wish I would have told her that I loved her before all those
horrible thoughts rushed into my head," my friend Kim told me after
the birth of her daughter with a disability. I understand. After I
heard the words 'Down syndrome,' I looked at my daughter Polly
differently out of fear and ignorance. I wish I would have
remembered that she was a baby first before her diagnosis. More
importantly, she was my baby. It took months for this to click for
me. Sometimes I still grieve that time lost.
2 Don't Google the diagnosis right
In our modern times, a click on to the internet is as natural as
brushing our teeth. But with a new diagnosis, hold off. It is
difficult to focus on your child if your attention is held hostage
by a vast amount of information. If you want basic information
about the disability, talk with a trusted source like your doctor
or check an up-to-date medical site online. Just don't go on an
internet rampage right away.
3 Care for your baby/child.
After having a baby with special needs, an experienced mother
offered me sage advice: "Continue to care for her daily." She meant
that I should not shrug off parenting duties to my husband, mom or
friend out of grief. "You take care of that baby," she said. Her
theory was that if I stayed away from my child, the grief and shock
of the diagnosis would be prolonged. At the time, I was a bit
offended, but I now see the wisdom. Changing my baby, feeding her,
bathing her and putting her to bed helped me see that she was my
child, diagnosis or not.
4 Try not to worry.
A new diagnosis brings worry-about your child's health, the
future, money, other children, your marriage, other people. Worry
is a dangerous landscape for parents anyway. If left to its own
devices, it sucks up our energy and time; two things that are
usually in short supply in parenthood.
5 Know there is support.
In the seven years that I have parented kids with special needs,
one of the biggest gains from the experience is community. Some
hospitals, organizations and schools host support groups for
families affected by special needs. Our family is heavily involved
with GiGi's Playhouse. Talking to other families calms fears,
provides great resources, and assures us that life is just as good,
albeit a little different, with the presence of special needs.
Gillian Marchenko is a Chicago mom to four girls. Her memoir, Sun Shine Down, about her daughter with Down syndrome published with T.S. Poetry Press last August.
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