I wanted to take a moment to thank all of the amazing amazing volunteers in my life over the years #volunteerweek I am forever grateful to the dedicated volunteers that supported us Why Me Camp Sunshine The Respite Center Perkins School Jimmy Fund Kai’s Village “Great opportunities to help others seldom come, but… Continue reading A Thank You to My Son’s Hospice Volunteer
The 4th year. ••• Much of my memory of that day at the funeral home is now faded and vague – a side effect of four years time that is both soothing and fiercely bitter. I am thankful for the reprieve yet still consumed by the constant fear that I will someday soon… Continue reading Cracking the Urn
I was lucky enough to get a ticket to The Moth a few weeks ago and the theme happened to be Siblings. For those who don’t know The Moth is a live story telling event where participants put their name in a hat and are picked to tell a true 5 minute story live on stage with no… Continue reading Siblings
A few days ago a friend (also a bereaved mom) was talking about this thing that tends to happen after you have a kid with cancer. You become the ‘go to’ person when any other child is diagnosed. It happens to me all the time. My friend asked, Why would some parent of a newly… Continue reading How can I help???
Powered by Kai to Advocate for Families Now: My testimony in support of S1138 On June 10, I joined a small group of pediatric palliative care professionals and advocates to testify before the State on behalf of providing comprehensive palliative care to ALL qualifying families in Massachusetts. I really had no idea what I was really agreeing too… Continue reading E pluribus unum, one out of many – advocating for all.
Thanks to the work I have been doing with Courageous Parents Network I have had many new opportunities to share our story lately. I have presented at serval professional conferences, contributed to several articles and been involved in helping others share THIER stories, which I particularly love. This piece I wrote came out today on… Continue reading Modern Loss | Anticipatory Grief a No Man’s Land
After almost two years I still have a hard time recalling Kai’s laugh, or the feel of his soft baby skin against mine, or the smell of his wispy blond hair. These fleeting moments of joy are still deeply buried under the smell of medicine and formula and vomit that has permeated my being. The… Continue reading Flash backs and Memories