BY BLYTH LORD

Hello!!! Before 2018 takes on a life of its own, we invite you to join us in celebrating the Courageous Parents Network community that you are part of and which has grown even stronger this past year.

Even as we live in a country with the best that modern medicine has to offer, and perhaps precisely because of that, there are holes in the care and in the community that families need when going through the unimaginable. Courageous Parents Network is all about filling those holes by empowering and guiding families with knowledge, coping tools, and the fellowship of other parents and by helping providers understand and see further into the intimate lived family experience.

For those of you who like numbers, in 2017, we experienced:

• 46,594 unique Visitors and 35,935 returning visitors.
• 24.296 courageous parent and provider videos viewed
• 350 pediatric providers reached directly via in-person presentations
• 230 individual generous donors
• 4 innovative foundation grants received
• $480,000 dollars raised, surpassing our goal by $50,000!!

Our Top 5 Videos

1. “They were like an old couple.” The Gauvin sibling love story.  Exquisitely, Ben and Allison describe their two children, Beckett and Clementine, who both had a rare metabolic disorder from which they died within 8 weeks of each other at age 3 and 2. They were soul mates.
2. The last hour of Talon’s life, and letting go. Courageous parents, Kristina and Chad, describe the moments leading up to and then following their son Talon’s death: peaceful, emotionally painful, and powerful.
3. Two children. Two different deaths. In its rarity, Ben and Allison’s experience losing two children so closely gave them surreal perspective on end-of-life. “You think you know what you’re going to do. You make plans but like birth, things don’t always go according to the plan. You have to be flexible.”
4. Jessica on being Rachel’s big sister. The experience of what it’s like for the healthy siblings is a really big deal both for the parents and the medical providers who think about the well-being of the entire family. To hear 18-year old Jessica is to be given a rare glimpse into how brothers and sisters love and cherish and learn from their medically-fragile siblings.
5. “When it’s not a good fit, find another doctor.” Needless to say, parents need to both trust and feel respected by their child’s medical team. It’s a partnership. Greg and Heidi share that this was not the case initially with their daughter Abby and what they did about it.

Our Top 3 Blog Posts

1. A mother’s letter to pediatric providers. “it is never a bad idea to make the referral to palliative care.” Genny, courageous mom of June, writes about their journey to palliative care and how it helped. “The thought that June wouldn’t live past childhood came to us late in her life. In hindsight, I think we would have benefited from clear, honest, and direct conversations from June’s physicians earlier on.”
2. Dreaming about Cameron, 16 years later. For some of us, bereavement is part of this. It is impossible to hold your child and parent them again once they die. Most of the time, now, these 16 years later, I, Blyth, am OK with this. And then sometimes I’m not. And that, I suppose, is the sum of it.”
3. Mothers are warriors but some battles can’t be won. What do you do when you can’t protect your child from the ultimate outcome of their disease? Carla, courageous mom of Talia, writes about she came to think of what it means to fight for your child. “In the absence of palliative care, or a good pediatrician who understands palliative care, the medical system can sometimes push parents along a path other than the one you might have chosen if you had had time to gain perspective.”

Courageous Parents Network is that unique combination of individuals who have responded to our story and mission, friends of families who have been helped by Courageous Parents Network, and, most importantly, affected families and the medical providers who are using Courageous Parents Network  for support, guidance, perspective, validation and fellowship.

One of our top goals for 2018 is to reach many more medical providers serving these children, as they are the gateway to families both for the referral to CPN and for the care. It is fitting then that we should share here a note that a nurse, who works with children having medical complexity in a NYC hospital, included with her year-end donation.

There are times when my knuckles are white from grasping the rails of the speeding train of medical care.   Those are the moments when I turn to Courageous Parents Network for perspective.  My donation is a token of my appreciation of what you do for me and for our patients.

Thank You for being part of our Network. We have a lot more coming in 2018 and hope you will return often or as needed to courageousparentsnetwork.org, to our YouTube channel, and to our Facebook page. We look forward to keeping you apprised of how families and clinicians are benefiting from Courageous Parents Network in the year ahead.  May it be a good one for you and the people you care about.

Most Sincerely,

the Courageous Parents Network team

Blyth, Kerri, Rebecca, Jennifer, Zach, Carol, Lanae, Billy, our Parents Advisory Board, our Provider Advisory Board, our Analytics Advisory Board