Holiday travel required conquering a fear of leaving my son at home
Separation anxiety is understandable for parents of children with Sanfilippo
“So how are you doing with the thought of leaving Will for that long?” my well-meaning friend asked as we discussed holiday plans after a workout class last month. “A week is a long time.”
I looked at her speechless for a moment. I’d just told her that my daughter’s choir had been invited to an event in Rome, Italy, over the New Year’s holiday, and they had the opportunity to sing at a papal Mass at St. Peter’s Basilica in the Vatican on New Year’s Day.
The flight to Italy would be too long for Will, my son who has Sanfilippo syndrome, but my husband, Tim, and I had agreed that it was a once-in-a-lifetime opportunity for our daughter, Samantha. We decided that Tim, who could work remotely over the school break, would stay home and care for Will, while I’d accompany our daughter on the trip.
With the hustle and bustle of preparing for Christmas and then the trip, I hadn’t really taken a moment to let the reality sink in: I would be away from Will for a full week.
“Well, I was feeling OK,” I joked with my friend, “until you brought it up!” We both laughed and went on with our conversation, but now worry had taken over my thoughts.
A delicate balance in parenting
Since Will’s diagnosis, I have rarely been away from him for extended periods of time. There were occasional weekend trips to visit family or friends, and one week-long trip to celebrate our 10th anniversary, but that was seven years ago. Will’s Sanfilippo in 2017 was much different than it is today. His condition has progressed, and while he is doing well for his age, I know that Sanfilippo can cause life to change in a moment.
Suddenly, leaving for a week felt like leaving for a year. What if something happened while I was gone? I wouldn’t just be out of town or a few states away. I would be across an ocean.
When I got home from class, my thoughts got worse. Catastrophic thinking started to fill my brain. How could I do this? How could I leave Will for that long? I knew Tim would take excellent care of him, but what if Will got sick or injured? What if Tim got sick or injured? Staring out the window, my emotions began to spiral downward.
Then I felt a hand tugging at my shirt. “Momma, I’m hungry. Can I have a snack?” It was Samantha, an awesome and vivacious 10-year-old who also has very important needs. And in that moment — besides craving a snack — she needed a mom who was present and focused on her and not on “what ifs.”
I took a deep breath, grabbed some peanut butter crackers, and reminded myself that our daughter deserves to live her life and have her parents fully committed to her experiences. She sacrifices so much for her brother’s needs and appointments, and I didn’t want to compromise a trip that she was so looking forward to with my anxiety. She needed a mom who was focused on everything that was right about this opportunity, not one who was focused on everything that could go wrong.
And that’s who I became.
We took the trip, and overall, I kept my worries at bay by focusing on making important one-on-one memories with my daughter. It was tough to be away from our boys, but everything went well, and when it was over, our reunion was joyous.
As someone who always anxiously prepares for the worst, it was a good reminder for me for the new year that sometimes things can — and do — work out.
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.