The Surprises of 2015
At the end of 2014, I was invited to speak at the Minnesota Network of Hospice and Palliative Care's (MNHPC) Fundraiser. The invitation was an absolute surprise. Me? Share Levi's story? Little did I know that one “yes” would unfold into a year full of surprises!
Never could I have imagined all that was to come in 2015. Invitations to speak, testify, write, and advocate for families like ours. Take a moment and walk with me through this journey. It is how you and I have been brought together today via MamaShu.
January
Crescent Cove invites me to be the keynote parent speaker at their 3rd Annual Home Plate Gala. Hosted by the Harmon Killebrew Hospice Home for Kids Fund including Nita Killebrew, Paul and Destiny Molitor, Jack and Jennifer Morris, Tony and Gordette Oliva. My family also participated in two videos for the event: “Day by Day” depicting the difficult realities of having a child with a life limiting condition. “Firetruck” a video of our family's surprise visit by Extreme Sandbox's firetruck with a ride around our neighborhood. I spoke about Levi's story in light of the importance of building a hospice and respite home for kids. Nearly 400 people were in attendance and $130,000+ was raised.
AMCECO invites me to participate in an audio course for physicians who don't usually encounter patients/children with a life limiting condition. The course introduced doctors to pediatric palliative care. Four experts were invited to be a part of this course: doctor, nurse, social worker, parent (me!).
March
Executive palliative care nurse, Jody Chrastek, invites me to conduct an informal parent survey on the needs for pediatric palliative care in our community. In March the results of my survey were published in MNHPC's Alert. This publication is read by MNPHC members including hospice and palliative care providers.
The Commission of Deaf, Deaf-Blind and Hard of Hearing Minnesotans and the DeafBlind Project of Minnesota invites to me to testify at the Minnesota State Capitol in support of spending bills to increase funding for Community Interveners who work with children with deafblindness. I was invited back two more times as the bills progressed through both the House and Senate's Health and Human Services Reform and Finance Committees. The political climate between parties was particularly adversarial this year as opinions were divided on if there was a budget deficit or surplus to be managed. After additional tough lobbying by the Commission the bill was one of the few spending bills to be funded in the final budget. The result: $2million increase over the coming two years.
“Thank you again for making arrangements to come and share your powerful story with the committees. Committee members hear so many bills and so much testimony that it is often difficult to actually get their attention, but you had them rapt. Your testimony will be remembered and will make a difference when the committee decides what to include in their budget later this session.”
Beth Fraser, Government Relations Director; Commission of Deaf, DeafBlind & Hard of Hearing Minnesotans
May
Crescent Cove invites me to record solo video testimonial about the realities of parenting a child with a life limiting condition and our community's need for a hospice and respite home. The video is now being used to educate people about the need for Crescent Cove's mission as they work to raise funds to build a this home.
September
MNHPC invites me to be one of ten people participating in a roundtable discussion with Senator Al Franken at Our Lady of Peace. I spoke about Levi's story and the positive impacts of palliative care in our lives. I was the only caregiver/parent/community member at the table who did not hold a professional position within a hospice/palliative care organization.
“Senator Franken leaned in and listened carefully to you as you told him about your family. The Senator is going to remember you and certainly your compelling words. I am so grateful for your presence. You bring light with you and warmth and such immense commitment to and passion for Levi and for the work we all do. Thank you Dannell - you are a gift.” Susan Marschalk, Executive Director MNHPC
October
Crescent Cove hosts its first annual Pediatric Palliative Care Symposium. They invite Peter and I to speak on a parent panel along with three other couples about our experiences within palliative care. We were the only family who had received palliative care upon our child graduating from the NICU.
Center to Advance Palliative Care launches a podcast series via GetPalliativeCare.org. I was invited to speak about our experience. Our podcast was the first released within the series and also included Executive Palliative Care Nurse, Jody Chrastek, who provided insight from a clinician's perspective.
I submitt an article "Letter to My Child's Care Team" for inclusion in the ChiPPS eNewsletter. This E-Journal is produced by ChiPPS (the Children’s Project on Palliative/Hospice Services), a program of the National Hospice and Palliative Care Organization and, in particular, by NHPCO’s E-Journal Workgroup. The article will be published in 2016.
"WOW! Just had a few minutes to read this. So powerful, so raw, so real. Love it when we get parent contributions like this (as you all know), but this one is instructive in lessons as only a parent can tell them. So thankful this will be included in our next edition. Thanks for letting me get a sneak peek. I wouldn't change a thing!" Ann Fitzsimons, Executive Director/Founder, here4U, Inc.
November
National Institute of Nursing Research, National Institutes of Health seeks parent articles for new materials within their “Palliative Care, Conversations Matter” campaign. I submitted an article focusing on the impact of our palliative care nurses. My article was one of four selected and published in November.
December
I complete a second year as a parent advocate on M.Health's PACCTeam (Pediatric Advanced Palliative and Complex Care Team). This is a collaboration of M.Health's providers in the hospital, clinic and home care settings.
As a parent advocate on the Pediatric Palliative Care Coalition of Minnesota, I took on the role of coordinating articles written quarterly by Coalition members for publication in MNHPC's Alert. This state-wide Coalition is involved in education, advocacy, and collaboration among palliative care professionals.
The Star Tribune publishes an article and video in their Sunday Variety section on 12/6/15 about Crescent Cove and their work to build the first regional hospice and respite home for kids. Our family was interviewed and featured in the article and video.
And last but not least, after a year of quietly blogging, I launched MamaShu.org!
Wow, what a year 2015 has been!
I am excited to discover what surprises 2016 will bring.
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