Words from the heart: Marie’s Speech from Fashion For A Cause
I recently attended the 45th annual event as the guest speaker in my roles as Harvey’s Mom, Hospice Volunteer and Local Grief Therapist.
For more than 10 minutes, our story held captive a boisterous crowd of @200. I spoke about the time when all of our resources were running low–except love–and how HOC stepped in at the READY. While we navigated the hardest time in our lives–the death of our child–HOC supported us with the gift of time, gift of connection and gift of clarity. Read my full speech below:
When I was asked if I was interested in speaking at today's event, my response was an enthusiastic yes. Some may find it hard to believe that I would willingly step onto this stage. Why would I want to come up in front of a crowd such as this to talk about one of the most challenging chapters of my life–the death of my child? Why would I agree to share the hardest moments I've ever experienced, with strangers?
The answer–to heal.
Our story is full of love and hope, two very powerful and uniquely human emotions. Our story is also heavy with sadness and grief, and what is grief but love with no place to go. Please join me as I share our story with you and in turn heal a little bit more. I’ve been grieving the death of my son for over 8 years. Sadly, in my child's short life–dying was actually the “easy” part.
Harvey was born in 2011 to 20 something newlyweds. We knew early on in my pregnancy that our unborn babe would face some challenges. Our first child would come out fighting. We didn’t know that he would be born early and that he would spend his first month in the NICU. We certainly didn’t expect that so much of his life would be spent in an intensive care unit. Harvey’s diagnosis began stacking up. First it was the cleft lip & palate that was found in our anatomy scan, then it was failure to thrive, add on hypotonia and we were wondering if he’d ever walk.
He didn’t.
At 9 months old, we experienced our first helicopter ride that ultimately led to the discovery of Harveys TWO rare blood disorders. Fun fact, I am the carrier. Next came the seizures–and even with expensive and experimental medications–the seizures didn’t stop. Harvey developed two rare forms of childhood epilepsy–Infantile Spasms and then Lennox-Gastaut Syndrome. His prognosis was poor, quality of life–deteriorating.
We were heartbroken.
As we adjusted to each new diagnosis, and each wave of grief, Harvey reminded us of what really mattered in life–the little things. Enter, Hospice of the Chesapeake. During our last inpatient stay at the Johns Hopkins PICU, we were discharged to the Chesepeake Kids program–children’s hospice. To say we were devastated is an understatement. I recall someone from hospice coming to the PICU to complete our intake, but I can’t remember who they were or frankly, much of what we talked about. I do remember what room we were in and where I was sitting. But the rest is blurry.
All I heard was, “children’s hospice isn’t like adult hospice.”
We weren’t giving up hope, but we WERE prioritizing the little things and hospice helped us do that. The Hospice of the Chesapeake team stepped into our lives when we were running low on all of our resources–except love. Our experience with hospice challenged our prior beliefs of what hospice and end-of-life-care was or what it could be. We all understood that we were running out of time. And that’s exactly what hospice gifted us.
Hospice gave us the gift of time.
In my opinion (one I share with many of you, I’m sure), time is the most precious gift anyone can give or receive. The hospice team gave us the gift of time when they took over medication management of all of Harvey’s medications. That service alone saved us hours spent on phone calls to chase down specialty medications. Hospice gave us the gift of time and reduced our stress by FULLY FUNDING THE COST OF Harvey’s live-saving medications. No copays. No deductibles. Paid in full by donations like the ones you make today. Not to mention, Hospice saved us from the headache and stress of driving to specialty pharmacies after work or on the weekends. HOURS upon HOURS of driving that kept us apart. Not anymore. Hospice gifted us time again when our assigned nurse would COME TO THE HOUSE for blood draws. Many of Harvey’s medications were toxic if taken too long or at too high a dose. But he needed high doses to treat his seizure disorder. Before hospice, we spent hours each month driving to specialty pediatric phlebotomy labs so that Harvey’s medication levels could be monitored. After hospice, a gentle and kind nurse came to our house and drew his blood from our couch. But hospice didn’t stop there…
Hospice gave us the gift of connection.
Hospice gifted us connection when our assigned Social Worker brought materials to our house to create meaningful memories with Harvey. One of my most treasured possessions is the Brothers footprint canvas. A sweet and tangible momento of a brotherly bond. The pediatric hospice team stepped in when we were running low on resources—all of them, except love. They worked hard to reduce demands made on us—the demands that took us away from each other—so that we could spend whatever time we had left together–connecting. With less stress and simple joys. The little things.
Sadly, our journey with the pediatric hospice program was brief. Harvey died at home on September 12, 2015. He had just turned 4 years old. Two months after joining the hospice family, Harvey left this world for some place beyond. We are forever grateful for the quality time we had with Harvey in those last tender months. I realized though, that my journey with hospice had only just begun.
Hospice and Harvey gave us, gave me, the gift of clarity.
Whoa, what? How? What can I mean by this? My experience with Hospice of the Chesapeake inspired me and provided the pathway for me to heal and then to give back. I’ll explain, but first…Story time.
My Dad is a people person. He’s the guy that makes friends anywhere and can talk to anyone–some say I’m a lot like him. When my Dad speaks to someone who clearly loves their career OR they have a job he thinks he could never do–he asks them about it; How did you get into this line of work? Why do you do this job, it seems so hard? He is truly honored to hear people tell their stories and it’s one of the ways he makes friends so fast.
Well, surprise surprise–he asked our hospice nurse these same questions. What I heard from her was something I’ve heard from others who support hospice and others who love their jobs. She felt called. Working as a pediatric hospice nurse was her calling. And that’s when it hit me. That tug. The calling.
I could do that. I could be like her.
I could apply my professional skills and training as a school counselor and my personal experiences with Harvey to help other families like mine…like me. I didn’t know what it would look like, but I knew that when I was ready, I wanted to work with hospice. I just needed to figure out how and in what capacity.
Maybe it was my way of honoring my grief or just dumping my focus into finding a path forward, either way, I came up with a plan. In 2017 and late into my third and final pregnancy, I went back to school for a few more classes and became a Licensed Clinical Professional Counselor. Fast forward to late 2019 and I was ready to work with hospice.
Roughly four years after Harvey’s death, I was cleared as a volunteer and at my request, assigned to a pediatric hospice family.
And then COVID hit and the world shut down all around us. Fast forward again to 2023, I contacted hospice to renew my interest in supporting their children’s programming. In August of last year, I had my first Camp Nabi experience. It was life changing and not just for the young grievers in attendance, but for me too. You see, my participation in that event solidified what I already knew–I was called to support grievers.
And that’s what I do.
I’m proud to say that Harvey inspired me to start my own business, Genuine Connections Psychotherapy. I work as a Grief Therapist, specializing in navigating life after child loss. I seek out other families and children like mine and support them through the most difficult chapter of their lives–figuring out how to live when your loved one is gone from this earth.
And now I’m here.
Sharing our story of love and loss, time and connection, clarity and calling with you. And I ask you, what are you being called to do today? No matter what it is, take this lesson from Harvey: Enjoy the little things. Seek time and connection with your loved ones. Clarify what really matters in life and live today as if tomorrow is not guaranteed. Thank you for hearing our story and for helping me heal today.
Team Harvey, forever.
I’m proud to say that my speech ended with a standing ovation AND tears throughout the room. I did not intend for either, but Harvey’s journey and our story have a history of affecting people in this way. Some say it’s my delivery, but I think it's the story. Probably both. Dozens of attendees approached me afterward, thanking me for telling our story and I found myself thanking them for hearing it. Afterall, they had to be there for this cause in order to hear it. Ultimately our goal was accomplished.
If you want to:
Read the full article.
Watch the entire speech, you can find it on my YouTube Channel HERE.
Volunteer with HOC Chesapeake Kids and support children grievers, learn more HERE.
Volunteer by my side at the 2024 HOC Children's Grief Camp: Camp Nabi, learn more HERE.
See more event photos on the HOC Facebook Page Photo Album.
Learn more about my Camp Nabi experience, read my reflections HERE.
