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Confronting the Fear

What happens to my special needs child after I go?

By Leslie Martini

For most parents, the topic of mortality is unsettling. But for the parent of a special needs child, it can be overwhelming. What becomes of my son after I am gone? How will my daughter find her way? What will be the social, emotional and financial impacts? What can I do to make it OK?

For years, these very questions wreaked havoc on my life, creating a crippling combination of fear and dismay. Confronting my deep-seated fears about death was an arduous process. But one that saved my life.

We met monthly, nine parents of special needs children. Today’s meeting was devoted to the topic of death and planning for our dependents. For the special needs parent, the implications of death — the necessary preparations required for their dependent’s survival — extend far beyond financial considerations.

“My husband and I had an overwhelming discomfort, and worried about the social, emotional and financial impact of dying before our daughter.”

The leader of our meeting spoke candidly about the barrage of questions that keep parents like us up at night. Who replaces us? Bill paying, grocery shopping, transportation, personal hygiene…the things we’d devoted our lives to.  My husband and I had an overwhelming discomfort and worried about the social, emotional and financial impact of dying before our daughter. Those worries ultimately served as the motivation for creating a special needs plan which included a trust, and a letter of intent: a letter detailing specific directives about the best possible care for their daughter after their death. Although the letter of intent was an excruciating document to write, we felt an enormous sense of relief in knowing that we have ensured the highest quality of life for Emily by laying the foundation today, and for as seamless a transition as possible after we are gone.

It took time for me to grasp the notion of mortality and the idea of our daughter surviving without her parents. It took time to consider the plethora of decisions that accompany creating a trust. Shortly after our monthly gathering, I set up the first of several first estate planning meetings, laying the groundwork for a life without fear.

“Many of us refer to that day as the awakening. We talk freely about our mortality and share our experiences with new parents.”

The significance of having an explicit directive eliminated any possibility of someone else deciding what was best for our child. It eliminated the burden of having these decisions placed on our other daughter or other extended family members. And it minimized the possibility of having our daughter susceptible to others taking advantage of her. For the first time in years, my eyes were wide open. I was able to look squarely in the face of mortality without crumbling.

Our group has grown in the eight years since that pivotal meeting. Many of us refer to that day as the awakening. We talk freely about our mortality and share our experiences with new parents. A mother who joined recently told me she spent years mulling over options for her dependent son, yet she was unable to move forward with a concrete plan. She referred to that time as a chronic state of limbo.  “My husband and I spoke often about a thousand topics, but whenever the subject of our own mortality or Luke’s future came up, invariably, one of us changed the subject. We both knew it needed to be addressed, yet we were unable to say the words.”  She and her husband were going through the motions– but not living life, just as my husband and I had done. Once they took the first steps and set up a trust for Luke, they immediately felt “lighter,” so much so that they soon decided to invest in a private, supported, group home for their son.

“This decision literally lifted a weight off of our shoulders. We are no longer fearful of the future.”

“This decision literally lifted a weight off of our shoulders. We are no longer fearful of the future. We are living our best lives and so is Luke. He is in a beautiful house with friends and a wonderful staff. He has a job and is in a program that makes his days meaningful and enjoyable. We have peace of mind in knowing that Luke is safe, happy and part of a wonderful community. It has allowed us to live out our lives in the best way possible.”

When I look back on those earlier days, I see a mother who was weighted down with the darkness of despair. Taking control and planning for my own mortality gave my husband and I renewed hope, allowing us to move forward with optimism about our daughter’s future. Today, I feel alive with promise, knowing that my daughter will be in good hands. I can’t wait to finish living out my dreams.


About the Writer

Leslie Martini is the author of two children’s books, Matilda, the Algonquin Cat, and Hamlet, the Algonquin Cat.  She is co-founder of AllaMartinis.com, a freelance writing and promotions company, and an active member of ASJA, 826Boston and Writers Digest. Her work may be found at www.lesliemartini.com.


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