It's been an emotionally difficult month. When Waverly & Oliver were diagnosed over 7 years ago, there were families we met that were also beginning their journey with Sanfilippo. You are drawn to one another because you can relate. We were all experiencing the trauma of diagnosis, the grief of the lives which should have been, and the stress of navigating this new world. And now our kids are older and their health is failing. Hospice is being called, DNRs are completed and hospital visits are becoming more commonplace. It's been overwhelming.
I remember talking with families who had older children with Sanfilippo many years ago. A few of them mentioned how they have lost contact with their fellow Sanfilippo families because it just gets too hard. I didn't understand it then. I certainly do now.
It is easier to stop calling and posting updates on Facebook. It's self-preservation. Protection.
I carry not only the sadness for my own children, but also for the beautiful children I have grown to love over the years. It hurts.