|Wednesday night (November 3,
2010), the Discovery Health Channel featured a series of special programming
on families living with children diagnosed with a variety of devastating
Thank you Discovery Channel!
The first special at 8 pm was about a family raising a daughter with
Primordial Dwarfism, a severe and potentially life threatening form of
The second special on at 9 pm, interviewed a series of families with
children diagnosed with Tourettes Syndrome, very similar in its scope to
ADHD with its uncontrollable impulses, motor tics and impulsivity. And of
course, finally the series on William Weaver, the 14 year-old boy diagnosed
with Prader Willi Syndrome.
For three hours, I was given an opportunity to see into the lives of many
families whom I have never met. For three hours I cried. I was introduced to
many mothers. And yet, as I watched these families and particularly these
mothers, I saw something in their faces that was very familiar to me. It was
almost as if I knew them somehow.
Each of these mothers possessed a certain calmness that comes from living
a life filled with sudden child emergencies and life threatening situations.
I saw in them confidence.
I saw in these mothers, a sense of urgency and frustration that comes
from fighting many battles, with many individuals, in an effort to demand
others see their children as the worthy individuals they are and not the
horrific diagnosis they posses. I saw in them, courage.
I saw in their faces a deep and unconditional love for their
misunderstood and ostracized children. I saw in them love.
In their faces, I saw myself.
Many friends and family members surround me in my life. But as I watched
these shows, what I realized is.....of all the faces I see each day, I do
not see any similar to mine. There is no reflection from others that they
truly understand the difficult life I lead. There is no comprehension in
their eyes of knowing what living a life like mine is really like. And
although I do receive a great deal of compassion and support from these
individuals, there is no complete understanding.
It is like living in a house with no mirrors.
I live in a world where I cannot see myself. There is no reflection of
who I am. It is almost as if I do not exist.
I bury my needs, and myself so I may have the strength to care for my
children. There is little time left for myself after busy days filled with
appointments and meetings. There is little time left to just be me. There is
little time left to see who I am and what I look like.
Watching these television specials allowed me for the first time in many
years, to see myself. For in these mothers, I saw an inner strength. The
same familiar inner strength that has given me the courage to endure a
lifetime of temper tantrums, locked cabinets and scratched skin.
For the first time in 11 years, I was given a mirror. I could finally see
I was so touched by the story of William Weaver and his family. The deep
and unconditional love these parents have for their child was presented so
beautifully. William's loving spirit and deep love he feels for his parents
was also captured so compassionately. He is a beautiful soul. I could not
I am very thankful to William and his family for showing us such an
honest and yet loving portrayal of the hardships they have faced. I am
thankful to them for sharing this deeply personal time in their lives with
all of us, so that perhaps others can understand the severity of issues
facing families raising children with this devastating disease.
I am thankful to the Weavers for helping to raise awareness of Prader
Willi Syndrome so perhaps one day we will find a cure.
Thank you to the Weaver Family from the bottom of my heart.
Thank you especially to William. You are my hero.