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To My Fellow Parents, From a Sometimes Sensitive Special Needs Parent

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When my son is brought up in conversation, which is quite often, you mean well. I understand this. The conversation will always start off with, “How is your son doing? Did they find a diagnosis yet?” And my response will always be, “He is doing as well as he can be! No, no diagnosis yet.” The rest of the conversation is variable but typically includes a well-meaning variation of, “Oh, he will all right. One of these days, he is going to just get better and will surprise us all!”

This is not the truth, and on my bad days, I can subconsciously find this response insensitive. When you talk about my son getting married someday, when you talk about him running around at school someday, it can stir emotions in me that can dictate the rest of my day. I know you mean well. I know you don’t quite know what to say. I smile and say, “Yeah, that will be something.”

The truth is, my son more than likely isn’t going to get married or run around like a typical child at recess during school. My son has a disease that cannot be diagnosed. He suffers from a neurological and/or neuromuscular disease that have the best doctors scratching their heads. My son has a ventilator and a gastrostomy tube.

I do, in fact, have a very happy son. He is not like your child, though. My son cannot talk, sit, crawl, roll, walk, eat or reposition himself. But goodness can he smile, laugh, grab his toys and pull my hair. He is the most positive thing in my life, my reason for smiling and having hope in life.

When I get down about wishing I could hear my son cry or wish he could tell me what he needs, your response is, “No you are so lucky not having a baby that you can hear cry or ask a million questions. It is a headache.” In reality, I would love for my son to cry, and I would answer all million and one of his questions. It would be so comforting not to have to walk into his room and see he has been crying, leaving me with the heartache of not being able to help him sooner if only I had known.

When I reminisce about the short two months I was able to feed him baby food, your response is, “Children are such picky eaters, consider yourself lucky.” Lucky? I cry over how much I miss holding that spoon and watching his delight while he consumed his sweet potatoes. I miss being covered head to toe in carrots. I know you mean well. I know feeding time is probably stressful for you, but our favorite bonding time was stripped from us without warning, in the blink of an eye.

I look at other parents and I cannot imagine the stressors you deal with on a daily basis. It makes me smile. Seeing the disasters that can ensue and the embarrassing scenarios that can unfold, it makes me happy. Although I do not get to experience these types of things, I am so glad that you do. And I am always here to laugh with you or listen while you vent about the rollercoaster of parenting. I just ask that you be gentle with me. Even though I handle it well on the surface, inside I might be torn apart. I know the side you see of our life looks normal, full of bliss and stress-free. Behind the scenes is a place most of you do not get to experience. Underneath the smiles and accomplishments lie heartache, setbacks and fear. Be mindful. Be supportive. Be encouraging. I need it more than you know.


A sometimes sensitive fellow parent

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: October 2, 2015
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