Our family had the amazing opportunity to meet a very dear friend of mine and her husband a few weeks ago. Helen and I have been exchanging emails, voxers, and face times for a few years now. She lives about as far away as one can live from us in the beautiful country of New Zealand. Although miles of land and oceans separated us, she spoke my language. She is also the parent of two children with Sanfilippo, an older daughter and a younger son. A woman who gave up her career to care for her kids, whose husband was ever present in their care.
Since we met online a few years ago, she has watched both of her children pass away due to complications of this cruel disease. And I have grieved from afar along with her. Grieving for her loss whilst thinking about my own anticipatory grief.
Lots of nerves accompanied her visit. I had butterflies in my stomach, hoping that our deep friendship via an Internet connection would translate into real life. And it did.
We tripped over our words, adjusted to accents. (Matt trying to understand them saying the Getty Museum will forever be an inside joke.) Dipped in and out of talk about Sanfilippo and all other aspects of life. Matt and I were inspired by them. They exhibited grace and love. We laughed a lot and cried during a heartfelt goodbye. There wasn't enough time.
And hanging over our conversation was the promise of seeing one another again. Matt and I would take our turn and travel to NZ. Yet we were all painfully aware that that journey will only happen after we too say goodbye to our children.