Mother’s Day 2010

Just a note of appreciation to my own mom, who has long since left this veil of tears, my dear wife, Louise, who has been such a wonderful mother to our two kids, and to all of the mothers who make this world a better place. Most of all, this is a good time to express special thanks to all the moms who go the extra mile for their children who have MECP2 Duplication syndrome (I’m not forgetting the dads… but this isn’t their day) or other conditions that require so much from loved ones.

I have been lucky enough in my work to have the chance to study families of children with severe disabilities. It has taught me a lot about the enormous power of common decency. It has taught me that there are is a lot of good in people and in families, and that adversity usually brings out the best in us. It has shown me the power of vulnerable children to transform their families. I have learned that prehistoric fossilized remains of older children with spinal and cranial deformities show that even our earliest ancestors found strength to care for children with severe disabilities. In a very real sense, we became humans when we learned to care for each other. I have read about mothers of children with severe disabilities who were slaves and yet found ways to care for their children for many years under the most adverse and inhumane conditions.

Most children with MECP2 Duplication syndrome will not be able to make cards or gifts for their moms to celebrate the incredible bonds they feel. Only a few have the words to tell their mothers how they feel… But I don’t think most mom’s really need a card or a gift to feel  love and the incredible connectedness with their child. I hope all of you moms and your families have a wonderful mother’s day.

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2 responses to “Mother’s Day 2010

  1. Thank you for this post. My son was diagnosed with MEcP2 Trip in January. He has since passed (his memory page was just added to the site). This is my first Mothers day, and also my first mothers day without Jack. Your blog post reminded me that Im still Jacks Mom though hes not here with me. Thank you!

    • Lynn, I am sorry for loss, and I can only imagine how the coming of mother’s day brings up a flood of emotions. I know something of what it feels like having lost a young daughter of my own decades ago. It never really heals, and yet I feel lucky to have had her in my life, even if it hurt to lose her.

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