What Will Happen to My Child With a Disability When I Die?


I can’t bear to think about it, but it’s always on my mind. I’m sure many parents feel the same way.

What is going to happen to your child when you die?

When your child has a disability that requires daily care, the uncertain future can break your heart.

Especially now that I’m the only living parent, and tomorrow is not guaranteed for any of us, I’m in private inner despair, barely able to sleep some nights, tossing and turning, wishing I knew for certain it will all be OK.

I love my son more than anything in life.

I know what it takes to make it through his day, and I don’t know how he will manage by himself.

It can often be a lonely, challenging journey, even when you are here to help your child.

The world can be often cruel and shouldering a disability isn’t always easy, even if you continue to smile and positively persevere each day.

What will happen to my beloved, sweet son, if anything should happen to me?

Who will give him the care and love he needs?

The thought of him suffering, lonely, going hungry, unsafe or unloved shatters my heart.

The statistics about unemployment, loneliness and homelessness than can happen to those with disabilities when their parents die scares me.

It’s especially anguishing if you don’t have caring family or community support or adequate finances, especially as a solo parent struggling to make it day-to-day.

I feel I’m in a race against time to make sure my child will be OK if anything happens to me, to teach him everything I can to increase his chances of making it.

And mostly, I hope for joy and wonder for his life, not just merely surviving.

I will not be here to know my son’s fate. It nearly kills me to know that.

I pray and hope for positive ahead, for much love, safety, good health and a wonderful life for him. I cannot bear to think otherwise, and I wish I could see into the future to know for certain it will all be OK.

And every day I wake up I give thanks in gratitude for another day, as I’m here for my son today, with more time to teach him skills and independence and to tell him how much he is dearly loved.

It won’t be easy on him when I am gone.

I can’t understand why the most innocent in the world often seem to bear the biggest burdens and suffer the most.

Despite this, my son always has such a radiant smile. His spirit is joyful exuberance and he is brave. He is the epitome of love and goodness. His heart is beautiful. He is perseverance and courage.

I struggle every day to cope with the reality that I will not know what will happen to my son.

I pray the world will be kind to him.

But I often see too much uncaring in society today.

Will someone even care about my son who means the world to me when I am not here?

Every morning I wake up with gratitude to be here for him another day, and I vow to be until my last breath. I brought him into this world, and I will not abandon him.

I will teach him each day, skills to navigate the world and life, despite the health challenges he was born with.

Whenever I feel worried and discouraged, I quickly refocus on being strong, because if I cannot do it, how can he, when he has so much more to bear.

He inspires me, because he handles challenges with such grace and always sees the good in life.

His happy smile and spirit reflect that.

I will trust in the good and positive people and in my son’s own persevering character, optimistic spirit, and joyful soul.

I love you so much, Son. You make this world better and nicer. May the world be kind back to you and may your beautiful wings be strong in your journey ahead and may all your life hopes and joys come true.

Getty image byjarenwicklund


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