My Deepest Fear as a Parent of a Child with Special Needs

Ok, let’s cut to the chase; death. Death is a loaded topic, brimming with emotion and for me, it’s my deepest fear. Death has a heavy impact on the living, because it’s just that, we have to LIVE with it. Death is not the subject matter at every dinner table across America, but it’s there, locked in a closet, the same one with all the skeletons you keep; waiting.

From childhood through my teenage years, death was the last thing on my mind, with a vision of living 90 plus years. I thought that death wasn’t something I would think about until my 60’s. Above all, I thought when death came for me, I would be ready because I would have a life that was lived.

My son was born 15 weeks early, and although his progress has always been delayed, its progress nonetheless. My son has aged me, and not in the way when a parent says “My child has taken years off my life.” The only thing my son has every taken, is my heart, and even though the years on my life only increase every 365 days, his very existence grows me with each second of every minute. His perception is so humbling and makes me appreciate all the little things about life that otherwise would pass me by. He continually shows me what it means to be an extraordinary human being, and what he’s given to me, would necessitate three lifetimes to convey back to him.

Time and death sleep side by side, and I worry that I won’t have enough time to teach him all the things he’ll need to know when I’m gone. I fear death mostly because dying means I’m leaving behind my heart; my exceptional son with special needs. As a parent we teach our child the skills they need to grow, go to college, choose a career, and have a family of their own. In that process, parents make a lot of sacrifices to give their child all those things and more. As a special needs parent, I take each milestone as they mark, each moment as they pass, and I teach my son the essentials he needs to better his life quality.

Recently I was asked, “Do you think your son will ever live on his own?” The truth is, when you have a child born with a “no quality of life” diagnosis and fast forward 7 years; walking, talking, breathing, the light of my life, you believe anything is possible. He is a miracle, but the reality is he may never sleep in his own bed, let alone his own house. There is a list I have, shoved in a closet, buried under the fears I hold and the skeletons I keep. This list includes all the things my son may never be able to do because of his disabilities.

Being a special needs parent to me is about, sacrifice, powered by hope, founded on love, living moment to meltdown. I spend little time planning for the future because my son and I live an unforeseeable path. However, as unpredictable as it is, my path will end like all the rest, and how heavy my heart feels at the thought of my special needs child (future adult) having to live without me. Who will remind him to take his medicines? Who will help him use the bathroom? Where will he live? Who could possibly care for him like I do? Even though I have hope that one day long before I pass my son will live on his own, I need to plan for the future with what is present today.

Today I’ve accepted that my fear of death pales significantly to something far more important; my son having a life that’s lived. I may not plan for the day to day that my son and I have together but I will plan for the day that we will part.

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3 thoughts on “My Deepest Fear as a Parent of a Child with Special Needs

  1. I stress all the time about this as my son is 10 and I’m 63. My husband died 4 yrs ago. Son is high functioning with sensory issues and ADD. Can’t get fr one place to another w/o constant coaxing. Has meltdowns. Think who would do what I do daily? More I think about it more I keep trying to teach and the more I stress. Everyone tells God has it. He gave him to us at an older age. He’ll take care of it. So why is every moment in my life think about this?

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    • KEEP going. You’re doing an amazing job, because you woke up today and you both got through the day in one piece. It’s all I ever hope for. My son has very similar traits to yours but with several other underlying and ongoing medical conditions.

      HOPE is the only sure thing we have. Just remember to do the day to day, moment to meltdown, and plan for your passing- imagine the fear of our special needs child if we die and we did not plan with a will or trust… That alone scares the fear of death right out me because they’re so much more important, and even more so when we’re gone and our voice can’t be heard… So put your voice on paper- notarize it and then continue to be there in the present.

      You’re amazing, even when you tell yourself you’re not…don’t ever forget it.

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  2. That was intriguingly beautiful and hit every key point in the depths of heart’s of a parent with a special need’s child. i to have the same fear just know you are not alone im sure every parent going through the similar situation feels the exact same

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