I have to start by thanking everyone for their incredible words of love and support. Reading stories about how Adelaide’s existence has positively impacted others lives, buoyed our spirits over the last week. The offers of help have been so kind and generous and as soon as I think of anything we need I will be sure to put out the APB. No child or family should have to go through this but they do, and we are. That said, we feel so fortunate to be surrounded by such a compassionate community that has gone out of their way to let us know they are thinking of us as we journey down this hospice path. I know I put you all through the emotional ringer last week with my letter to Adelaide so I’ll try and be a little kinder this week. Also, I’m emotionally spent and physically exhausted from sleeping in bed with a little girl who would rather not have her mother incessantly snuggling her. Tough luck, ladybug.

Now, if you were like me, you might be asking yourself, “what is hospice anyway?”. I’m certainly no expert having only navigated this space for the last month, and I imagine it looks a little different for everyone, but the following has a been our experience. Earlier this year Adelaide’s Army convinced me to bring on palliative care services. Not understanding what palliative care was, I was more than a bit stubborn and it took months to convince me. You’d think I would have learned from my unfounded resistance to home nursing but, apparently, accepting professional help is still not one of my stronger suits. With assurances that we would still be fighting to improve Miss A’s symptoms and life, I permitted palliative care to come on board. A nurse practitioner and a social worker came into our home every other week and we were also given access to a 24-hour care line through which we could request a nurse visit at any time of day. This meant fewer visits to the pediatrician and gave me and our home nurse an additional resource for navigating the complicated world of health care, insurance, equipment, medication, services, etc. The best part of palliative care, though, was being able to receive her, three-days every three weeks, IVIG infusions at home. However, because our goals were still to improve her baseline, she was still visiting the PICU or general peds floor in the hospital for several nights every month for illnesses, discomfort and/or testing.

When we finally began to accept that Miss A was tired and fading, and our goals changed from improvement to comfort, we continued to work with the same palliative care company but now in their hospice division. While many folks may be familiar with hospice as a place, it is actually a category of care. With help from the hospice company we are able to keep Adelaide at home where she is the happiest and we can all be together. On a macro level, our hospice team supports our family by simplifying Adelaide’s care for us, even as her condition has grown more complicated. Specifically, they have taken over supplying us with all of Adelaide’s food, medical supplies and care items. They visit at least once a week, more frequently if needed, and are a compassionate source of information as Miguel and I continue to make challenging decisions regarding her care and beyond.

Together forever, Jackson and Adelaide’s hands. September 2019

Through hospice we have also utilized child life services. For many families going through this, I imagine the child life services are often for the sick child. However, given Adelaide’s limitations and often sedated state we elected to use these services for Jackson. By doing so we have given him someone to talk to and play with who can help him make sense of the inevitable. Our child life specialist also facilitated an absolutely perfect mold of my babies holding hands which I will treasure forever. Apparently, beautiful things can come out of hospice!

Recently, I’ve found myself thinking of hospice as an inchstone on the way back to a non-medically driven life. Since transitioning, we have gradually stopped seeing her specialists and she likely had her last blood draw a couple weeks ago. Each step has come in its own time as we have been ready to take it. We are stripping away the clinic visits, tests and procedures that had become our bizarre normal, and it feels weird. It dawned on me the other day that I have no idea when I will be back in a hospital again. That hospital life had become so familiar to me, I mean, we racked up some serious frequent flyer points. Don’t get me wrong, I am in no way going to miss sleeping on an industrially made futon several nights a month - but I will miss the people and the familiarity of the routine. Change is hard even when some of it seems to be for the better.

So, this is life in hospice. A day at a time, taking our cues from Miss A, making decisions regarding her care I never could have imagined. But there are also some beautiful moments and memories being made along the way that we will cherish forever. And at the center of it all is the feistiest little girl I’ll ever know who has no idea the impact she has made but really wishes mommy would give her some space and sleep in her own bed tonight. Not gonna happen, my love, not gonna happen.