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. 


Anonymous said…
Out of the blue I felt the urge to track down your blog today of all days and read your latest updates. So glad I did. Sending prayers to you and Oliver.
Anonymous said…
I’m thinking about you and your family at this time.
Aubrey. said…
Anonymous said…
Tears running down my cheeks and my heart is aching for you and your family. Even though we don’t know each other, I’ve been following your blog for many years. I thought about a lot lately and checked in on your blog often. There is nothing I can say, but, I’m thinking of your family, your sweet boy, and am sending prayers half way around the world to you.
Greetings from Switzerland and thank you for sharing your life.
Unknown said…
If there is anything you ever need from me I will do everything in my
power to make it happen. Anything. Thinking of you daily.
Lindy Keffer said…
Fellow TU grad sharing your tears over here in Colorado. May Christ meet you perfectly in your grief. I can't imagine, but I know He is able.

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