An end as a beginning

Note: I joined substack during Liam’s last hospital stay. It seemed to mirror the beginning of the blog that I had started after Liam’s birth so many years ago. A blog that changed our life trajectory and helped us so much as we navigated life as a family of a child with complex medical needs. Then I struggled trying to figure out a way to begin writing here aboput Liam for the public again. As I type this my brain is a hazy, fuzzy, pile of mush mired in sadness and anger and guilt but it seemed like an ok idea to shatter the blank page of my substack which will obviously now take on a new focus on greif by reposting my instagram announcement of Liam’s passing.

We lost our baby boy. Yesterday morning, Liam, in his parents arms and surrounded by their love, passed away in his sleep. He died with dignity, grace, and peace in his own bed, In his own bedroom, in our own home.

While the end came quickly, the last few hospitalizations have grown increasingly harder and our latest discharge from the PICU was actually an admission to Hospice care in our home. While we had hoped Liam would be treated by hospice for years and years he gave us the amazing gift of the past three weeks filled with joy, and love, and our pride at his strength.

Our hearts are shattered with a grief that feels like an actual physical injury. Our lives will never be the same and we still cannot believe that he is gone. Please keep him in your hearts and minds. As Keanu Reeves once said when asked what he thought happens when we die — “ the people that loved us, will miss us.”

I will forever miss Liam. It was the joy and honor of my life to be his dad. We are the luckiest parents ever to have been given the opportunity to parent Liam for 16 years. This kid who was never supposed to leave the hospital when he was born. While this is a pain stronger than I have ever felt before it is worth it to have experienced the joys that we have felt to have Liam as a part of our family and our hearts.

Calling hours will be held at Smith Mason Funeral home in Riverside RI on February 4th. Please see their website for details.