I Want to Live in the Moment While There’s Still Time

My daughter Abby has Sanfilippo syndrome, which is a terminal, genetic disorder. She will likely leave this earth before me.

That thought alone is quite a lot to absorb and process. It forces me to think long term. How many more years will she be here with me? What will our lives look like in several years after the disease has progressed? How old will she be when she passes?

But what I want to do instead is to live in the moment with her and focus on the short term. To intentionally discern the present moment. I say intentionally because that is exactly what it entails: intention. We can’t live instinctually, or on autopilot, if we are living intentionally and being present in the moment and in each day.

When I am living in the moment, I am able to pause and think for a second about the reality of living with someone I will likely outlive. That has a way of changing my perspective.

Recommended Reading

December 21, 2021 Columns by Valerie Tharp Byers

When Help Isn’t Helpful

Perspective is usually gleaned after events have occurred, sometimes well afterward. Time is required to reflect and allow for hindsight — to look back on events and think of them from all angles or points of view.

When I reflect on the past, I conjure up memories of a younger Abby who could speak and make choices. Little Abby, the extremely hyperactive toddler who kept me on my toes! Then, when she was a teenager, the Abby with an attitude. As time passed, she became grumpier and began losing interest in things and regressing. Now that I know it was Sanfilippo syndrome taking its toll on her, my perspective of her and those changes is more clear.

But concentrating on Abby as she is now requires conscious effort. I realize that sounds a little harsh, but she does not communicate verbally much anymore, and sometimes she is completely silent. This alone causes her to fade into the background at times, especially if I am busy with something.

So how do I focus on the short term, the now, the present? Doing so involves a multitude of small things. Spending time with her by just sitting next to her on the couch. Scrolling through TikTok and occasionally showing her funny videos with animals when she peers over at my screen. Singing to her or dancing with her to her favorite music, or maybe peeking in on her while she’s sleeping.

My hope is that the future me, when looking back on this time with Abby, has positive memories. I have no idea what she is currently thinking or how she is feeling, but I want to ensure that Abby feels loved and accepted. I will continue striving to create that environment for her and hope she feels it every day.

***

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.