“You are so crazy, why do you sacrifice in raising your
child all by yourself, without her father and in a foreign country?” complain
my friends. “Many families have a child like yours and live happily here, where
they have their family and community to support their efforts.”
Such repetitive questions and phrases no longer affect me,
for if they are not in my shoes, they can never understand WHY. My child did
not meet any of her childhood milestones. She was seen by many different
doctors at big hospitals, but no one could tell what was wrong, why she can’t
talk at age three. No school would accept her, as she was a very active little
girl who could never sit still at the table or follow a teacher’s directions.
She hardly slept at night without being cradled in our arms. She could not chew
or drink from a bottle or cup by herself at age three. Her second home in her
first three years was her private doctor’s clinic, as she visited him every
month. Yes, I could have support from our family members, but where does my
child belong when so many places excluded her due to her deficits?
Culturally, people cannot accept the fact that a married
woman left a child with special needs behind to go abroad for advanced study,
and then brought the child to join her without her husband. Can’t you
understand: my life is my daughter’s
life. Regardless of public rumor, my perspective of caring for a child with
special needs cannot be explained simply by saying, but by doing - to prove
that my child can learn and flourish like any other child.
Regardless of the difficulties of being alone in this faraway
land, her smile and happiness bring me such strength and energy. Regardless of
obstacles as I balance life and work, her daily tiny progress brightens my days.
Regardless of challenges in navigating a complicated system of care,
appropriate services that meet her needs are all that I care about. Can’t you
see; she missed her interventions in her first five crucial years. It is said,
“Better late than never.” I would feel even more guilty if I took away her only
opportunity to grow.
It has been almost four years since my child received both
medical and educational care in America. Challenge after challenge, but she has
become a totally different girl. Now, she communicates using signs and her
talker; I have come to believe that being nonverbal does not mean she has
nothing to say. She signs, in response, “I love you” by crossing her arms in
front of her chest when I say ”Me yeu con lam,” or “I love you” in Vietnamese.
She hugs me tight when I am upset, as I believe that she is like any other
child who does not want her mom to be upset, though she used to have no response
to any emotion. She can now put on her pajamas and turn the light off herself
before bedtime, as I believe she is grown up enough to do so. She can also help
me to wash dishes after our meals.
These may seem to be small milestones to many of you, but for
my child with multiple disabilities, all of them are really meaningful signs
that she is blossoming.
Perspective from maternal love is that you love the whole
child as it is her disability make her special.
By Oanh Bui,
A proud mother of Tiny with Dup. 15q and PDD-NOS.
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