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
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
As a child, years were not marked or measured by the sequin dresses and party hats of January celebrations but by the excitement and nervousness of entering a new grade in school each fall. The first day of school brought a new beginning, a chance at rediscovering ones place in the world—new friends, new interests,… Continue reading Back to School for the Childless Mom
Another guest post for the Courageous Parents Network. http://courageousparentsnetwork.org/13-whats-in-a-t-shirt/ As a teenager, I spent hours scouring the Salvation Army and Goodwill shops for the perfect retro T-shirt: musty, holey, faded. Size didn’t matter nearly as much as insignia: Yoda, the Three Stooges, and my long time favorite ‘china’ written in kanji. I wore that shirt… Continue reading Identity | What’s in a T-shirt?
May 2013 Us cancer moms talk a lot about how helpful it is to be around others who “get it”. We always preface this gratitude with “I wish I didn’t know you” because that would mean our kids weren’t sick, but if I am in this at least we’re all in this together. As… Continue reading A New Camp: the year and 1/2 after
4/14/14 Today the roommates and I took a drive to eastern mass for a workshop and found ourselves with hours to spare upon our arrival. As we followed the GPS to our destination Ashley noticed a sprawling cemetery that surrounded us on either side of the road and suggested we take a walk through to kill… Continue reading A chance encounter