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.


Rebecca A said…
What you have to share is very important to me. ((HUGS))
Anonymous said…
Seven years. so sorry, shannon. nm
Anonymous said…
I know I cannot truly grasp the deep hurts and sorrows you face on a daily basis. Yet I continue to keep you in my prayers, asking for strength for you. I can well imagine that you have built around you a community of people whose precious children are facing the same (or very similar) challenges to what you face...and the heartaches that go with those challenges. It makes sense, then, that your sorrows would be compounded when (in addition to your own beautiful children) the other children you have "grown to love over the years" are being hit harder and harder by Sanfilippo. My heart goes out to you, and I wish there were more words I could say. Words don't suffice. But I will keep praying. And I will not forget Waverly or Oliver.

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