Milestones can bring unexpected tides of grief with Sanfilippo

My son's eighth grade graduation ceremony was bittersweet

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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A banner for Valerie Tharp Byers' column, depicting blue and purple swirls dancing across a night sky, with the words

June is a lot.

I’ve written before about how the start of the summer impacts our family. Our son, Will, has a rare condition called Sanfilippo syndrome, and that diagnosis is thrown into full focus each June.

As the school year ends, my caregiving responsibilities take center stage as I work to find appropriate activities to keep both Will and his neurotypical 10-year-old sister engaged. It is also Will’s birthday month, where I joyfully celebrate another year with our son (hooray, we made it to 14!). At the same time, I can’t help but consider the sobering Sanfilippo statistics and estimate how much time we might have left with him.

As I said, June is a lot.

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I was gearing up for an especially rough June this year. First off, we had to prepare for another State Fair Hearing to fight for Will’s full physical therapy regimen to be covered (and this still isn’t resolved). Also, I was going to have to balance full-time caregiving with my new job, as well as finish the arduous process of moving into our new, more Will-accessible home. These last two tasks were good problems to have, but they were also more work and emotional energy heaped on an already full plate.

I thought I was as prepared as I could be, but then a milestone hit that I hadn’t fully anticipated: eighth grade graduation.

Glimpses of life without Sanfilippo

Will finished eighth grade this year. He attends our local public school, and after spending three years at the intermediate campus, he’ll now be transitioning to high school. My main concern regarding the change is introducing him to a new routine, a new building, and new people. It is high school, but for him it’s obviously different. We aren’t worried about academics, college scholarships, or career readiness. We just want him to be with people who care about him and work with him to reach his potential. I thought I was good.

Then I attended the eighth grade graduation at Little Sister’s school, where I work.

Part of my job involves attending and photographing events. We had actually planned on Will attending this school, but our plans changed upon his diagnosis. Overall, having the kids at two different schools has been fine, giving Little Sister, as well as my husband and me, a place that is separate from our special needs family identity (though we’ve been blessed to have built an accepting and caring community there that loves and welcomes Will).

A mom stands with her two children against a brick wall in what could be a classroom. She's just behind her son and holding his arms to support him. Her daughter stands beside them, holding up two award certificates the son earned. The boy and girl are wearing matching purple patterned shirts, while the mom is in a solid purple shirt.

Will Byers’ family celebrates his academic achievements at his end-of-year awards ceremony. (Courtesy of Valerie Tharp Byers)

As I began to document the graduation ceremony, I unexpectedly became overwhelmed. I thought I’d be able to ignore the fact that this year’s eighth grade class would have been Will’s. These would have been his classmates, his friends. Their parents would have been my friends. There would have been sports events and sleepovers and birthday parties.

A deep grief hit me as the announcer finished reading the “B” last names, where Will’s name would have been included. I excused myself to the bathroom and allowed myself a good cry before heading back in.

It’s so hard to see glimpses of what Will’s life would’ve been without Sanfilippo, and sometimes I feel guilty for these feelings of regret. We love Will just as he is, but we will never lose the grief of his diagnosis. The emotions are complicated. We can celebrate him for everything he is while simultaneously wishing he didn’t have to endure the struggles associated with his condition. That is a grace we give ourselves.

Thankfully, several days later, we did get to celebrate Will for who he is. It was his eighth grade awards ceremony, and Will had earned All “A” Honor Roll and Language Arts Award of Merit in his program! While milestones will never stop being bittersweet, we will always be proud of him and everything he achieves.

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


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