I have fought every day of the last six years for our son. I have watched him endure pain, procedures, tests, trials, and endless hospital stays. Each day is a day filled with a wonderful chaos that the whole family has accepted and adapted to. I reflect back on particularly hard days with an awe and reverence—I can’t remember how we survived this struggle or that battle. That’s just the nature of medical complexity…you get it, I know.
But not too long ago our world changed again, as we’ve become accustomed to, but this journey we were about to embark on was uncharted. When the word hospice comes up in the world of pediatrics it seems as though it is with a hush and only heard in a whisper. I WANT TO CHANGE THAT.
HOW we got here doesn’t matter. It’s been a series of progress and struggles, heartbreaks and joy. WHY we chose this path also doesn’t matter. It was analyzed, interpreted, prayed about/reflected on, with huge team meetings that showed a lot of raw emotions hard to relay into words. What I can safely say is: it is with no regrets.
It’s funny, but as sympathetic and empathetic as people attempt to be, these two thoughts—the HOW and the WHY—are the ones that people will get stuck on. It is of course well-intentioned but it stings. I’ve spent a lot of time thinking about why these are the specifics that people think of most, and what I’ve come to realize is that because Pediatric Hospice is not spoken of and is so unimaginable, people can’t help but have that response. So, my goal, my plan to carry on my son’s legacy is to share what Pediatric Hospice has brought our family.
Pediatric Hospice Care has brought us JOY.
We just experienced our LONGEST ever span without hospitalization in six years. That is a three-month feat that is absolutely a product of the care we have received in the home. Having nurses to draw labs, do X-rays, monitor vital signs, check-in, communicate with other portions of our team…to manage all the things that might have at one time landed us inpatient. This has cleared the way for unimaginable JOY shared as a family.
Pediatric Hospice Care has brought us TIME.
We’ve eliminated nonessential appointments. Weekly check-ins are made by a hospice nurse in our home. Supplies, meds, and such are managed by the hospice team. This means my days of endless calls and follow ups to get this piece of equipment serviced, or those diapers, or this essential medication delivered are over. The gift of time allows for us to shift focus to the moments.
Pediatric Hospice Care has brought us PEACE.
Restlessness and constant internal struggle become a portion of life with complex medical needs…the “why’s” always mounting and crushing. Making choices, stacking those Jenga blocks and holding your breath, your mind never turning off. I’ve been searching for peace for years. I didn’t ever imagine I would find it in writing words out that no mother should ever have to write in regards to your wishes. But there is peace in saying the things you’ve been thinking and fearing for years. There is comfort in sharing your wishes for how you will handle what is next. There is a wave of contentment that washes over you knowing that your wishes are the forefront of how care will be given.
Pediatric Hospice Care has brought us HOPE.
While the hopes we had in the past have changed to frame the picture of my son Kellan’s life, what we’ve learned is there is always hope. A shining example of that is the HOPE that hospice has provided. There is hope that tomorrow will be a good day, hope that we will be able to make Kellan’s wishes come true, hope that we will meet the goals that we’ve set forth as a family, hope that even if tomorrow is a bad day we have the tools and the capabilities to stay home. The hope that hospice has filled our lives with is comfort, for Kellan, for all of us.
What I know is these are the things I wish I knew when I frantically googled Pediatric Hospice at 2am the night before our initial consult. And my hope is that if I keep sharing these wonderful beautiful things, the photos of the sweet moments hospice has given us, maybe the “why’s” and “how’s” will be hushed, and Pediatric Hospice will be heard above a whisper.
This is my boy still livingly loudly and loving boldly on Hospice…because of Hospice.