As with every new chapter in your life, you prepare for your
long-awaited miracle baby. You line your bookshelf with
knowledge-what to eat, how to sleep, what to expect, the doctor's
visits and your list of questions. Giving birth is like the world
outside does not exist anymore. The moment you hold her and look in
her eyes your world changes forever, welcome to the club.
You proudly stroll your miracle around for the world to see.
They grow, smile, coo and melt your heart. Then one day you notice
that your baby does not act the way the others do, she is not
sitting up, she cannot self-feed, your instinct sends off signals
that consume you. However, you get reassurance from your doctor,
family, friends, "oh, they all do such and such at different times.
Just be patient."
Then preschool starts and she seems different next to the other
kids, she is quiet, she does not participate, she cannot focus. At
home she is alert, attentive and smart, she knows the alphabet, she
can count to 10. School calls, 'we are concerned,' they say,
'perhaps you should consult a neurologist.'
Fast forward, the bookshelf is now filled with topics such as
sensory dysfunction, social and emotional development. Dr. Stanley
Greenspan is a household word. You have textbooks on raising a
child with special needs. As you remove the Secrets of the Toddler
Whisperer and replace it with Special Kids Need Special Parents you
realize that somewhere along the journey of early parenthood you
needed to take a different route.
There really are not any books that address your particular
situation with your child, you have to dig, research and learn new
phrases. You take parts of one book and combine with parts of
others until you have files upon files of references. Your computer
is a history of resources, shots in the dark and gut instincts that
got your child the diagnosis they needed for success.
School becomes an entirely new area to challenge your very
meaning of the word education. How little did you know what this
world looks like, feels like; there are boulders to move and on
occasion, someone comes along who gives you hope.
In the meantime, you feel compelled and obligated to pass along
your journey to those who are just beginning to navigate it. We
will always be parents of special needs children, no matter their
age. We all understand the rules; no two situations are alike, your
outcome and mine will not matter, we will cheer and celebrate each
other unconditionally and then it will become your turn to pass
along your knowledge.
In the meantime, you want to hold your child up to the heavens
and say "look what she can do, she is amazing" and I thank God
every day for the ability to raise this child whose very presence
has given me the opportunity to enter a world that teaches more
than any Ivy League school could do, that represents triumph more
than any triathlete has ever experienced and humbles the strongest
Being the mother of a child with special needs awakens your soul
and makes you look difference in the eye. It changes every
relationship you have known, spouses, friends, even some family
members will not take this journey with you. You do not have time
for petty arguments, you have a child to advocate for and every
minute of every day will be committed to making sure she has the
best possible chance.
We don't give up. We never quit, we can't.
We will hold our children up and catch them when they fall and
when they have accomplished another victory you just smile at them
and say "I knew you could" even when you secretly thought they
couldn't. We are witnesses to daily miracles. And we know deep in
our hearts that we are the lucky ones because once you enter our
world you realize how beautiful each of our children are.
Tammy Novak, of Chicago, is mom to Julia, 8.
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