On the Eve of Sweet 16

Joanne De Simone essays

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My son’s 16th birthday will begin like every other day. I will pause in Benjamin’s doorway to assess the color of his skin, and watch for movement. I will approach the bed. His eyes will still be closed, but he will greet me with a smile. I will comfort him if a seizure strikes. I will change his clothes and diaper. I will use ointment to trace his surgical scars. We’ve lengthened tendons, straightened his foot and spine, repaired a fractured femur, and secured his dislocated hip.

I will place Benjamin into his wheelchair, administer medications through his feeding tube, and give him a breathing treatment. I will brush his hair, teeth, and clean his pimpled face with astringent pads. I will lavish Benjamin with kisses, and embrace him like I have every day for the last 5,840 days. Then I will look into Benjamin’s eyes, see his abundant simple joy, and be filled with a calm only he can give me.

As I wheel Benjamin to his school bus I will resist reliving the heartache of every missed milestone: walking, talking, the warmth of his hand in mine. I will not ponder the unobtainable future transitions: driving, college, marriage, and grandchildren. I will push aside pressing responsibilities: the requirement to petition the court for guardianship rights in two short years, the will I need to update, or the trust fund I could never appropriately supply.

As Benjamin’s 16th birthday comes, I will focus on the three children from my online support group who have lost their lives due to the complications of Lissencephaly. I will remember the 18 families who lost their little ones last year. I will honor all the children I’ve mourned for the past 16 years by savoring the relationship I still get to share with Benjamin. There won’t be a need to hug him any closer than any other day, because I have always loved him fully and consciously.

The guilt of not having bought a gift will creep in, but I will finish plans for his party. He will enjoy the company of his oldest friends, his preschool classmates. We are all looking forward to being physically present with those who have intimately shared our laughter and pain.


Sixteen years after I entered motherhood there will be cards, presents, cake, and something unexpected. My younger son will ask me, “Why does Ben always smile when he wakes up? Is he just happy to see you?” I will celebrate this day when my older son reached a birthday so many children like him have been denied, and my 12-year old son peered out from behind his autism to acknowledge his brother’s finest trait.

It is always possible to discover small but significant joys. My mother taught me this, but I feared the lesson would die with me. I admit I often feel that I am failing my boys. They lack so many basic skills, and yet they can still show me how I’ve managed to get at least one thing in motherhood right.


About the Author

Joanne De Simone

Joanne De Simone is a special educator and parent of two sons with special needs. Her work has appeared in The Huffington Post and Brian, Child Magazine’s Blog.

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March 2015 – Celebration
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