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The Gifts That Pediatric Hospice Gave Us

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Here we are, about a year out from the day we chose to begin hospice for our 6-year-old son, Jacob. I knew as soon as I climbed in the ambulance with him a year ago that it would be our last ride; I just had a feeling. I knew his body was tired. I knew the seasons of his life were changing. What I didn’t know was that we while we were facing the end of our son’s life, we were also being blessed with a great gift: hospice.

Hospice never sounds good. The word itself indicates death and dying and oftentimes, that makes people really uncomfortable, especially if you’re referring to pediatric hospice. What is hospice? For us, it’s choosing comfort. It’s realizing that sometimes, even maintenance care can be intensely stressful (bi-yearly bronchoscopies for example). It’s accepting that you can no longer “fix,” and must now just love and care.

The situation that shouted “hospice” to us was a gradual decline of Jake’s nervous system, causing dysautonomia and the inability to keep his body warm. We called an ambulance that day because his temperature was 94.5 degrees Fahrenheit, but we had done similar things before. I knew there was only so much they can do.

We didn’t realize, however, that we were facing only four months of hospice before Jake went to heaven. At the beginning of the process, we discussed a three-year term, and afterwards we’d revisit our plans. Pediatric hospice has different guidelines than adult or geriatric hospice.

Hospice made us throw caution to the wind a little more often. Which was undoubtedly, another gift. I recall planning for a Christmas party just a few days after getting out of the hospital with our still new hospice plan. We decided Jake needed to go. We brought his heated blanket and lots of warm clothes, all his meds and his equipment. It was so much. He loved it! He stayed awake for most of it and got to see Santa Claus.

Hospice also made us make time to snuggle and cuddle and enjoy the little things. A friend, who has also lost a child, told me to take pictures, so I took pictures of everything: his fingers and toes, his eyelashes, his cute little nose. We had a friend come take candid photos of us just enjoying him one morning.

The other gift it gave us was a plan. Now that we were in hospice, we had a plan for the end of Jacob’s life. We knew what it would be like (or most likely), we knew the signs indicative of a decline, and we knew what we wanted for him. I have always been someone who needs as much control as possible around a situation, and hospice helped me find balance in an almost uncontrollable situation.

Lastly, we were blessed with the gift of the plan we had for him coming to fruition. Not many people get to plan how they will die, and even less get to honor that plan — because dying is as personally unique as being born.

For us, letting Jake go home to G-d in the comfort of his own bed, in our home, surrounded by those who loved him most, was what we wanted and what we assumed he wanted. We chose to make him very comfortable with medicine and remove his ventilator, as his life was mostly pain at that point as his body was slowly shutting down. I can see now that we made the perfect choice at the perfect time, just as it was all meant to be.

A doctor once told me he saw life in seasons. We are born in the spring, and in the winter, we pass away. I like this analogy. Jacob struggled a lot to get through spring. I feel he really came into his own and found comfort enough to just enjoy life in his late summer or early fall — that beautiful time of year when the leaves change and a walk outside is brisk and refreshing. That was the part of his life he most enjoyed. Jacob’s winter was short. We almost didn’t realize winter had come and he was gone.

I miss him every single day, but I’m still thankful for the gifts hospice brought into our lives. Sometimes, there is no other way, as much as we wish there was. Throughout his life, Jacob attracted the most incredible people, many of whom remain good friends today. But hospice? That was a team of angels, I am almost positive.

Originally published: February 15, 2019
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