Waiting for Death at Age 4: Tay Sachs

There is a grandmother who will not take vacation or go on extended trips this year. She will stay close to home and be available to her family. She keeps a very special vigil. She is the grandmother to a four-year-old angel who suffers from Tay-Sachs Disease and who will likely die this year.

Elise is a beautiful, beloved child whose family has cared for her in every way possible. Tay-Sachs has rendered her unresponsive. Surrounded by love, she nevertheless is alone. This child is subsists on a feeding tube. Hers is a difficult, demanding life the challenge of which her family has responded to with tremendous heart. Her mom Laurie says:

"Being a mother to Elise has been the most rewarding experience of my life so far. As Elise's mom, I have been given the opportunity to explore the depth of my love, character, abilities, and patience. I do have the endurance to go on when I feel I can't anymore. She has taught me to pursue things further and work harder than I ever would have on my own. I do have the courage to fight for things Elise needs when no one else will. Elise has taught me humility to accept that there are times when I can't make things better. Most importantly, I have learned to love at a deeper level than I ever could have imagined. For all of these lessons I've learned from my Little Teacher I say thank you and I love you."

I don't believe for one minute that God wills for any of us to suffer; I believe suffering happens and that through God we can learn from it and grow. Elise's story reminds me that I have no complaints--not the mud on the rug, the abandoned book bag, the half-finished husband project, the dust bunnies marching around the house.
Elise's family hopes all couples who wish to become parents will have themselves tested for the disease; neither mom nor dad is Jewish, yet both carry the gene. These are conditions necessary to contracting the disease.

This beautiful child has taught many people to love without reward, to be here now. To know that life is good. To love out loud. Before they know it, she will teach them to love and let go. Please God, we will be with them in spirit. Amen.

P.S. How was your day?

Comments

  1. My day is ending much, much better, now that I have Elise's story to consider and Elise as the subject of a small prayer. One of the Innocents, a little saint while she is here.

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  2. Thanks, Greg. This child is the granddaughter of a very good friend's lifelong friend. My friend's fridge is decorated with the favors and photos the family has created at Elise's special events. They are thorough in their love of her; that's why they work hard to promote awareness of this issue. Makes me stop and tell myself, "this WILL be a good day." Wow. An angel, indeed.

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  3. Anonymous8:12 PM

    Stories like this wrench your heart. Seeing photos, like the one with Elise's Dad after he had her face tatooed on his shoulder where whe would always fall asleep, bring on the tears.

    I find it very interesting that this disease can be prevented, but not cured...we know how to keep it from coming but not to make it go away.

    Oh, Lord, we can fix so many things that afflict us. Please help someone find a way to help children and families in the same situation as Elise and hers.

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  4. Anonymous9:03 AM

    that is really said and she was so cute!

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  5. I have started a campaign to raise awareness of Tay-Sachs disease: www.twitter.com/taysachs. Please follow our effort to raise awareness. My goal is to attract 1,000 followers and eventually find a cure. Please help find a
    cure.

    Marcus Hardie, Esq.

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  6. My sisters little boy is 21 months old and has Tay-Sachs. Neither my sister or her husband are jewish and they both carry the gene mutation. It is so sad and hard to watch them deal with knowing their little boy will not be here much longer but we all have the faith that God knows best and that their little boy will have a much better life in Heaven doing all the things that on earth he will never do. Thank you for sharing your story and God Bless you. I will pray for Elise as well..

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