Who will love him?

When you are parenting a special needs child, you can't help but wonder how his life will be once you are gone.

By the time I was 25 years old, I knew 25 people under the age of 25 who died or were killed. That simple fact says two things about me: 1) The loss of so many young friends definitely shapes one's frame of reference, and 2) You might want to rethink being my friend.

Despite these tragic events and losses — or perhaps because of them — I never feared death. As Woody Allen once said, “I’m not afraid of death, I just don’t want to be there when it happens.”

A new perspective

Then, in an astonishing twist of irony, it took a life — the life of my son — to change my pragmatic view of death. After my son was diagnosed with PDD-NOS, the thought of death was abhorrent. My “ultimate reward” (which hopefully will not happen until Jimmy Choo designs a super-sexy stiletto pump that transitions into a super-sleek running shoe) has become a personal obsession.

"Who will be there to love, protect and advocate for our son?"

The only reason I now fear my death is simple: When my husband and I pass, who will be there to love, protect and advocate for our son?

Like many families with special needs children, my husband and I have spent sleepless nights in anguish and uncertainty about Ethan’s future.

Who will love and care for Ethan like we do? Will he need a group home, or will he live with relatives? Do we transfer the title of our home to our son, with the stipulation that our daughter and her family can also live there in perpetuity? (Can we even ask our daughter to take on that responsibility?) How much money or inheritance will he need to be comfortable? Who will drive him to activities that stimulate his interests? Will his love of music be nurtured, or allowed to slowly erode? Will his life matter to others like it did to his father and me? Indeed, will he even know — or care — that his parents are no longer there?

Forget Heaven and Hell. Not knowing how my son’s life will be is purgatory on earth. So, my mission is to do all I can for him, here and now. But when my time does come, I know there will be at least 25 people to welcome me. And boy, oh, boy, have I got stories for them!

Tell us

If you have a child with special needs, do you worry about your death? How do you deal with that fear?

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