Feeling disconnected from my daughter as Sanfilippo progresses

Being a parent is one of the joys in my life. I fiercely love my daughters and cannot imagine life without them. My youngest daughter, Emily, is 27 and teaches first grade. She’s the funniest person I know, and we have such a special relationship filled with laughter, prayer, and tears. My oldest daughter, Abby, is 29 and has had special needs since she was born. In 2017, we learned that she has Sanfilippo syndrome, a rare, genetic, terminal disease.

Since Abby’s diagnosis, she’s lost all her functional language. She can still say a few words and babbles some, but it’s not for communication purposes. She mostly communicates with her facial expressions now. Fortunately, she appears relatively content most of the time, though we have no way of knowing if she’s experiencing pain or discomfort.

Her motor skills have also significantly declined, and she’s unsteady on her feet. She used to be quite active, and now she only gets up if we help her. She can no longer feed herself or manipulate objects, either. She also exhibits less awareness of her surroundings, including people around her.

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My faith gets me through

Lately, I’ve noticed that I feel more disconnected from Abby. That’s not surprising, considering she’s unable to reciprocate in conversation. And it makes me wonder how she feels about it. Is she sad that she can no longer talk with me? Or is she even aware of her current condition?

I talk to Abby as if she does understand me, in case some receptive language skills are still intact. She deserves to be treated with that kind of dignity. At minimum, I want her to know she is always loved. My husband and I tell her many times a day that we love her, so I’m certain she understands it in some way.

I rely heavily on my faith to get me through dark times, especially when dealing with strong emotions evoked by Abby’s diagnosis. It’s the light at the end of this long, heavy, tumultuous journey of having a child with a terminal disease.

I believe we’ll ultimately be reunited in heaven, and she’ll be whole and able to talk to me once again. And there will be an accounting for how I cared for her while on earth! I hope to hear her say that she was treated with love and respect. The hope associated with this reunion is a driving force that pushes me forward in this journey. Knowing that Abby will be free of this disease one day provides a small glimmer of hope.

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.