On July 1st Gilchrist Kids marked their one year anniversary of caring for infants, children and teens and those that love them. What an extraordinary year it has been….filled with many lessons, tender moments and immeasurable admiration for the courage of our kids and their families.
Gilchrist Kids has been privileged to care for 32 pediatric patients this inaugural year. Each experience, each story has been unique and has challenged our team of talented professionals and volunteers to think outside the traditional framework of care delivery in order to best connect with and guide families through their experience.
They have taught us so much.
We’ve learned that kids and their families are the ‘resident experts’ on their diagnosis. With few exceptions, they have been living with the intrusion of disease for many years and they know best what works for them and what does not.
We’ve learned, with emphasis, the importance of a positive, trusting and reliable relationship between patients, their families and the care team. To help establish that trust, many times our Gilchrist Kids team touches our kids and families through hospital visits, clinic drop-in’s and even calls and texts before they are invited to participate in a child’s care. This, I suspect, is related not solely to the type of care Gilchrist Kids represents to families, but to the clear understanding that each moment is precious and should not be wasted surrounded by professionals who do not have their wishes and needs in the forefront. We’ve been reminded that our colleagues who know our kids in settings preceding end of life care are incredible professionals and do incredible things! They are impressively protective of those they care for and ‘really choosy’ about who they invite to be a partner in care as their kids and families journey along the care continuum. And they want to remain connected.
Communication and collaboration is standard work among pediatric providers. Nurses, physicians and the entire care team want to hear from us on a regular basis…..and how refreshing this is! We’ve also been humbled by the expertise of pediatric end of life care providers from across the country and their generosity and willingness to entertain our questions and guide our programmatic decisions. THANK YOU!
We are reminded day after day that our work, the coordinated efforts of a team of professionals and volunteers with their hearts in the right place can make and incredible difference for our kids and those that love them.
Whether we are helping a very young couple be parents for their terminally ill 13 day old son at home, helping a terminally ill young mother create memories for her 2-year-old daughter or coaching and guiding a family through the disappointment of disease recurrence and the challenges of parenting a ‘typical teenager’ it is amazing work. We are so privileged that our kids, their families and their care teams invite us into their lives.