The Fear That Lurks in the Back of My Mind as a Special Needs Mom

There’s a fear that lurks in the back of my mind. It’s always there. Most days I can push it away, but every so often, something will bring it back into sharp focus. Sometimes the triggers are completely unexpected — a photograph, a line spoken in a movie, a chance remark overheard.

This time, it was seeing a preschool t-shirt of my eldest daughter, who has hypoplastic left heart syndrome. Summer clothes were starting to be put away as fall arrived. It was an acute reminder of time passing by, and with it, a stark realization of the fragility of life.

A dozen memories flashed through my mind — sports day, days out at theme parks, trips to the park, picnics in the garden. My daughter’s beautiful smiling face, her joy, her zest for life shining through. So many happy memories. I felt a sense of sadness for a summer gone by and for moments that now only exist as memories.

It’s not just the passage of time, the bittersweet realization my little ones are growing so quickly or the end of summer that brings me to tears. It’s the fear that nags at me, the fear of what my little world may look like when summer comes again. It’s the fear of the unknown and the steps in the journey yet to be taken. It’s the reminder of the times when we lived from moment to moment, the days spent next to a cot in the pediatric intensive care unit and not knowing what the next hour would bring. The knowledge that one day soon, my child’s life will once again be in the hands of a surgeon.

It’s something I try not to think about if I can help it. But sometimes the fear of what the future may hold threatens to overwhelm me. These are the moments when all I want to do is stop time from passing by, to hold onto this moment and to make it last as long as possible. I can’t stop time. I can’t change what the future holds, but I can do this: I can have hope and faith, and make the most of today.

And so today, I will hold my girls tightly. I will treasure those moments and store them in my heart. I will push away the fear and focus on the here and now. Today my girls are both here. Today we can have fun together and make memories.

I don’t know what tomorrow will bring, but I won’t let the fear of it take the joy out of today.

Follow this journey on Little Hearts, Big Love.