Friday, March 16, 2007

Deafblind documentary

Recently we were made aware of this website through a touching story about the world's only known, deafblind triplets. This family experiences unbelievable challenges every day with their 6 yr old girls. The Triplets were born at 25 wks gestation and suffered many of the same battles that our Abby did while in the NICU.

Retinopathy of prematurity took their vision. Time spent on the vent along with multiple antibiotic treatments stole their ability to hear. My heart literally felt as though it was crumbling as I watched their story unfold... too much of it was so familiar.

Deafblindness is such a deep, curious, seemingly untouchable disability. As a mother I often feel completely helpless as I watch Abby crying out, or yelling while kicking her legs... not knowing what she needs or wants. I can only imagine the extreme difficulty of taking care of 3 "Abby's".

In order to raise awareness about deafblindness, a documentary has been made featuring these triplets. My mom ordered a copy of the film for our family and I can't wait to see it. Every day thousands of preemies are born, and many of them are as small as our Abby was. Some of them will glide through the NICU without any lasting health problems to take home with them... others will live every day in stride, learning how to accomplish the most simple of tasks with extraordinary effort and frustration.

Because so many "micro preemies" are living past their days in Intensive Care there will be a growing number of deafblind infants and children in our life time. I am really encouraged that this issue is finally being made public so that more people will know and understand the struggle... and maybe a few of these people will feel led to become trained to help deafblind children.

This is our hope for Abby. Friends who can 'talk' to her, and play with her in her language. Mom and Dad who can see the heart of their child and reach in with comfort and love, the way she needs it.

Connection with her world without fear or reservation.

Check out this site, I think you will be blessed by it.