“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.