Julianna had a severe form of CMT, a neuromuscular disease, and the “best” (meaning the most aggressive) medical therapy wasn’t working.
We could have continued on this aggressive path, but the treatments would get riskier, and there was no guarantee they would help her live longer.
Still, when we started hospice, I felt defeated. We were taking our little girl home to die. And this is, of course, what happened in the end.
What I could not have imagined is that hospice would give us 18 beautiful months and that they would the happiest of my life.
Deciding to start hospice
To get to the point of contemplating hospice for your child, a parent has to say “enough.” Such a moment defies the most basic parental instinct that your child must live at any cost.
Hospice means that you have watched your child suffer — a lot — and that you have stood beside them, wishing desperately that it could be you instead of them in that hospital bed. It means that you have fought, with desperation and ferocity, but come up short.
By the time you are considering hospice, you have already endured a thousand smaller deaths: your hopes, your dreams, your understanding of the world — it’s all died.
And yet my child was still there. She was in an impossibly fragile body, and it would one day fail. I was terrified of that day, but I knew that doing more would not necessarily mean her living longer. And even if it did, I was afraid of the cost to her — because she was the one who had to bear it, and she had already done enough.
So my husband and I made an impossible decision and changed the terms of the battle. The disease would take our child’s life, but we would fight like hell to make that life beautiful for as long as we were allowed.
Focusing on Julianna, not the disease
People tend to think that hospice means giving up. It’s anything but.
The actual routine of caring for Julianna didn’t change much when we entered hospice. Our house functioned as a mini hospital, and we worked around the clock to keep her oxygenated and nourished.
The difference was in our focus. Before, the goal was to obliterate her disease; in hospice, it was comfort and joy.
For Julianna, that meant tea parties and princess paraphernalia. We thought harder about the treatments and the toll they took on Julianna’s weakening body. Did she really need 10 minutes of chest percussion twice a day? Would eight minutes do?
A few months after starting hospice, we decided to stop using her oxygen monitor at night, because it was irritating her skin. That first night, we felt strange and vulnerable. Soon, though, there was a shift. Instead of studying the glowing numbers of the machine attached to my child’s body, I studied her beautiful face as she slept. The time wasted worrying about oxygen saturation was spent instead on far more important things: memorizing the perfect curl of her eyelashes, holding her hand, watching her breathe.
Six months into hospice, I wrote in a blog entry: “If there is such a thing as thriving in hospice, we are witnessing it. Though her body continues to get weaker, Julianna’s mind and spirit are bright, sharp and lovely. Last year was a desperate campaign against her disease, but now we are in sort of a truce. No hospitals, no emergencies. Just blessed, sweet time with our Julianna.”
Life doesn’t give many do-overs. Hospice gave me a chance to reset things to their proper order, something that had gotten lost in our highly medicalized life.
Preparing for the end
After I got pregnant, I had almost a year to prepare for Julianna’s arrival. I chose a doctor and decided what type of birth I wanted. I read books about what to expect and consulted with friends. People gave gifts, and I felt supported.
Where are the books and resources and friends who tell you how exactly to prepare for your child to leave this world? We needed infinitely more help with this, but we felt utterly alone. We didn’t start getting the support we needed until we entered hospice.
The nurses and counselors of hospice guided us, gently and with great expertise. They refilled our medications and took in our fears. They answered the questions I couldn’t ask anyone else: What would the end look like? Would we be able to keep Julianna comfortable? How would we get through this?
One year ago today, the thing I feared most came to pass. And I have the answers to those questions now.
It hurt more than I could have imagined. But she was comfortable.
Love was at the core of every decision we made in hospice, and love is what sustains us now.