An Update on Oliver

Matt and I shared the letter below with our friends on social media. I thought I would share the information here as well.

Dear friends, 

As we think you know, our greatest joy has been being parents to Waverly and Oliver. Ever since we learned that they had Sanfilippo Syndrome, our purpose in life has been to love and care for them as best as we possibly could as long as they were with us. It pains us, and we wanted to let you know, that Oliver's time with us is drawing to a close. He has been on hospice for a few months now, but this week his body gave us clear signs that it is wearing down and can't take much more. He looks far more worn and exhausted than any 11 year old ever should, but he is comfortable and cocooned in the love of his family and community. We are not sure how much time we have left with him, but we ask for your prayers and love as we spend these final moments caring for him and loving him as best we can. 

We don't expect to post many updates on social media. Feel free to share this with those who know us and care for Oliver, but please no tagging. Thank you all, sincerely, for all the love and support and many kindnesses you have showered on us as a family over these many years. 

With Gratitude and Sorrow,

Matt and Shannon

We have been down this road before. However, Oliver's journey will look different. A friend remarked that we will have two distinct experiences so we can distinguish them from one another. I find comfort in that thought. We are attempting to find ways to make this process unique to Oliver.