Did I Appreciate My Daughter Enough Before Sanfilippo?

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by Kelly Wallis |

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Motherhood is a gift. Having the opportunity to raise children is an honor. They need so much care, but they give so much back in return. The love between a mother and child is profound, and I am so appreciative that I have been able to experience it.

I have two daughters, Abby and Emily. Abby is my oldest, and she has a genetic disease called Sanfilippo syndrome, which is sometimes referred to as childhood Alzheimer’s because of the toll it takes on children’s cognitive abilities. She is 25, but functions more like a toddler because of the abilities that Sanfilippo has taken from her.

Abby wasn’t diagnosed until 2017. Prior to that, she was considered to have autism spectrum disorder. Sanfilippo syndrome is degenerative and terminal, so the only direction Abby can go is down. This means that I have already witnessed Abby at her “best.” What a hard pill to swallow. I am convinced that I did not appreciate the abilities Abby used to have enough.

It is hard to even remember Abby as a conversational, somewhat independent child, but I have videos that demonstrate how much ability she has lost. Still, I have so much trouble remembering her in any other way than she is now, which is so sad. Facebook notifications or photos from my phone try to invade my days with memories of a younger Abby who was involved in various activities. I avoid them, as they are too painful to see.

If I had known when Abby was younger that I was witnessing her do things she would lose the ability to do, I am sure I would have taken more time to appreciate them. Abby’s accomplishments and successes have always been celebrated by her whole family, and she has never missed out on accolades. Still, I think I would have taken just a little longer to enjoy those moments.

When you visit a beautiful, once-in-a-lifetime place or event, you hold your breath for a moment and take a mental snapshot of everything you see. You try to hold on to that for as long as possible. If you are spending what you know are the last moments in the life of a dying loved one, time becomes more precious. I want that time back with Abby, that little bit of extra time to appreciate what I can no longer witness.

The moments I have left with Abby are so valuable. I hold her hand a little longer or give her a few extra gummy bears. I spend time with her watching Disney movies and listening to her favorite songs. I hug her often and tell her I love her almost every time I see her each day. Not knowing how much time she has left here with us makes that time sacred. I just don’t want it to end.

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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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