Sunday, November 28, 2010

A House with No Mirrors

On November 3, 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 was about a family raising a daughter with Primordial Dwarfism, a severe and potentially life threatening form of Dwarfism. This family struggles to cope with the possibility of losing their daughter by age two.

The second special featured several families of children diagnosed with Tourettes Syndrome, very similar in its scope to ADHD with its uncontrollable impulses, motor tics and impulsivity. These families struggle to try to maintain any sense of peace, happiness and well-being for their children.

And of course, finally the series on William Weaver, the 14-year-old boy diagnosed with Prader Willi Syndrome, a disease causing an insatiable and deadly appetite, this family struggles to keep their son from eating to death. My 8-year-old son, Nicholas has also been diagnosed with PWS.

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. 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 possess. 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 all about. 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 doctor's appointments and meetings with specialists. 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. That 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.

After the episode was over, my husband and I wiped the tears from our eyes and discussed our thoughts about the show. What was interesting to me was that although my attention was focused on William's mother, Faith, my husband's was focused entirely on his father, William, Sr.

It was almost as if I was searching for my reflection and my husband was searching for his.

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 sincerely. He is a beautiful soul. I could not stop crying.

For those of you who missed the show. The Learning Channel (TLC) will be airing "My Deadly Appetite" once again on December 1 at 8 pm.

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 diagnosed 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.

 

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I have interviewed William about his continued success losing weight and managing his emotions. Since May, he has lost a total of 94 lbs! In the post, he shares his thoughts about his stay at the Children's Institute in Pittsburgh and how he felt coming home. He talks about how he feels after losing weight and continuing to do so at home.

 I have posted William's story on my blog. Please read it at: www.onalifelessperfect.blogspot.com

Here, you may leave a message for William and his family. All messages will be forward to the Weaver family.

Please let William know what a wonderful job he did sharing his inspiring story and raising awareness of Prader Willi Syndrome.

This young man's story has allowed our family to be hopeful for the future. If you too are inspired, please let him know by leaving him a message. Many thanks to everyone and Happy Holidays to all.  

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