Posted on April 10, 2018
This post is one I’d hoped for so long I would never have to write. It crushes my soul that this is our reality and that I have to report that, at 11:14pm yesterday, April 9, at 371 days old, our amazing little boy took his last breath in my arms and under the hands of his daddy and a truly phenomenal doctor.
Late last week, we received the news that his CT scan showed evidence that his (already very poor) lungs had actually gotten worse, despite how his respiratory compliance had improved. It destroyed us, especially since he looked so amazing on the outside. But Brian and I agreed from the beginning that if there was ever a point when there was no chance for recovery and he would be unable to come home and lead a happy life, that we would let him go. We reached that point last week.
We had the most amazing weekend with him. So many visitors were in and out. He is such a special little guy and has touched so many lives. It was so eye opening with the amount of staff that came through to show him (and us) so much love. He was awake and alert for all of it and very comfortable. We were also able to get him outside in the healing garden for the first time ever. And we did it as a family. Harleigh handled it all really well and the nurses and Child Life specialists did an amazing job of making it fun for her. She was also able to see the helipad and get in the Bear Air chopper. We hosted close friends on Saturday and our family Sunday and yesterday before spending some alone time. It was all very peaceful and the staff were the epitome of compassion and grace. It was clear how very much he is cherished. And they all assured us, even down to the last minute, that we were making the decision that was right and best for him.
We will have many pictures to share from our visits and outdoor adventure via instagram and our Facebook page (Team #MemphisWilliam). We will continue to keep you updated here of arrangements for a celebration of life and later today I will update with information for a meal train. T-shirts are still available and we’d love for everyone to wear their shirts for our very informal service ❤️ www.customink.com/fundraising/memphiswilliamspencer