Madison’s Story
This article was featured in the Spring 2001 VIBRATIONS Newsletter of the Colorado
Services for Children with Combined Vision and Hearing Loss.
By Tammy Juarez (Madison’s mom)
Madison is a darling, happy five-year old that
started life with numerous complex conditions.
She was born two months early due to me having
contracted the Fifth’s Disease during pregnancy.
At birth, the doctors observed a Grade IV
intraventricular hemorrhage with brain damage
so extensive that Madison was not expected to
live. During her two-month stay in the hospital,
testing bore out a hearing impairment, being
legally blind and having hydrocephalus. Shortly
thereafter she was diagnosed with cerebral palsy.
We are most grateful for all of the accurate, early detection, which provided her
inexperienced parents with a map for the future. We had no idea of the many triumphs
and heartaches, happy times and sorrows that laid ahead or the time investments that
would be required for her pathway of growth and fulfillment of her potential.
When we brought Madison home, a few abnormalities were prevalent: an enlarged head
with a great sunken spot, a tube that she needed to be fed through, constant crying that
could not be relieved (she was being over-stimulated), and a breathing monitor (it is scary
to know that my little girl could forget to breath). As time progressed, normal milestones
were being missed. She did not like anyone to touch her hands or her mouth, she could
not move her left side, she could not roll over, she could not eat semi-solid cereals or
food, she could not communicate with her eyes and would not respond to movements,
and could not hold up her head. It was as if no muscles small or large would work. The
only stimulation or enjoyment she seemed to like was music. She learned to love music
at an early age and that is still paramount in her life. The gap between her and the typical
child quickly became about a two-year deficit.
My husband and I are most grateful for the numerous people who have lovingly
supported Madison and us through this journey.Madison is lucky to having loving,
devoted parents, four sets of grandparents, and numerous aunts and uncles and cousins
that have loved her and tried to be a part of her learning experiences. Her Dad sacrifices
and works two jobs just so I can stay home to give Madison every advantage possible.
This enables me to take her to her numerous doctor appointments, many therapist
appointments, two schools (at one point), mainstream activities that are therapeutic such
as gymnastics, swimming, horseback riding, plays and musicals, Easter egg hunts, and
most of all mainstream activities that children participate in. We try not to set any
parameters or ceilings for Madison. We feel that the more she is exposed to, the more
she may grasp.
Our little girl is quite amazing. She has now accomplished so many things we never
imagined were possible. Madison has a walker and loves to go on walks. She enjoys the
movement she receives from her trampoline and her swing set. In fact, we had her signed
up to go skiing at Winter Park through the National sports Center for the Disabled, but
needed to have surgery. Maybe this next year. Madison is learning to identify the
symbols of the alphabet and counting of objects. She knows her shapes, colors, address,
phone number, how old she is, where she was born and also how her name is spelled.
She has always loved being read to and now has several books memorized word for
word. She is always happy and is very proud of her accomplishments. Madison can sing
any song she has ever heard and even knows the words to the music I listen to. I have
dedicated the song, “In the Arms of Angels” by Sarah McLachlan to my sweet daughter,
as she is truly my “Angel.”
The Colorado Services for Children with Combined Vision and Hearing
Loss is funded through the U.S. Office of Special Education Programs.
Copies of this material may be reproduced with the consideration that
there is appropriate credit to the author and source.