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A House with no Mirrors

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 illnesses.

 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 Dwarfism.

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 myself.

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 stop crying.

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.

Best wishes,
Lisa Peters

 

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