The Good Moments Are Everything When Caring for My 'Rare' Kids

I keep thinking that my life, parenting kids with rare diseases, is not entirely unlike living in a house perched on a seaside cliff. There are still stunning vistas of endless seas that delight and inspire, but there is also the foreboding of the knowledge that one day, barring some kind of a miracle, your home could potentially slide off its foundation.

It’s hard to remember there was a time, not so very long ago, where I was married to the man I loved with two beautiful and seemingly healthy babies living in a whimsical Victorian flat in San Francisco.

That was the time before.

A time before pediatric clinical trials and chronic pain management protocols and the unwilling and unexpected entry into the world of parenting children with rare diseases. A time before our lives were dictated by an endless stream of pediatric medical appointments and ‘sick’ days. A time before I unwillingly entered into the sisterhood of “Moms of Kids with Rare Diseases.” A time before balancing caregiving and having a career — the career more necessary than ever after losing the girls’ dad, as I became the solo source of support. A time before life was dictated by the availability of pediatric specialists and endless moments in waiting rooms. A time before the the monotony of fighting to get insurance to cover the necessary treatments and for the implementation of IEPs. A time before waking every four hours to administer medication and to hope that no ED visit is in the offing.

And then there are the “good moments” – anchors of hope and the building blocks of gratitude.

In the time before, I did not have this nomenclature – of the “good moments” – now they are everything. So many “good moments” were had this weekend! My heart feels warm and full. We snuggled together in my bed, shared sushi, enjoyed the magic of walking on water via paddle boarding, sang songs, danced around the dining room table, picked peas from the garden and played with the dog.

As I write this, my youngest lays next to me from the pain that does not abate and I think how grateful I am that we shared so many “good moments” this weekend. I have discovered a new beauty and poignancy in the moments of now and an ability to be grateful that surprises me.

I find the “good moments” everywhere. Even in my moment of maternal anguish that another day of childhood is lost to pain, I am grateful for a career that lets me work next to her bedside. I am grateful we live in a place with electricity and running water and not in one of the tent cities occupied by Syrian refugees in Greece, or in a rural village where mothers of sick children must leave their bedsides and homes to find drinking water. There are mothers of sick children everywhere and we all live for the “good moments.”

And I recognize that I have become like those cliff dwellers — living with joy on the edge and gripping the moorings of each of the “good moments” with a tenacity that surprises even myself.

Follow this journey on Mermaids and Rebels