One year ago, Aimee was discharged from Children’s Hospital after a long Summer, Fall, and Winter that left her on a ventilator and IV nutrition. Our goals for Aimee at that moment were to get her home to celebrate Christmas, to keep her comfortable, happy, and home. We have succeeded beyond our dearest hopes. She has been home. She has had happy days. We have been together as a family.
What happens from here? Well, Aimee is on a combination of hospice and palliative care. This means that we have access to the hospice services, including comfort measures and an ability to allow a peaceful passing when Aimee is ready. It also means that we can continue to choose treatment care as much as we feel is in Aimee’s best interest. This unique combination is available fairly recently to kids in our state. For our family, for Aimee, this means we are choosing to not take Aimee to the emergency room or to have her admitted. We are treating any infections or issues at home with the support of hospital guidance, IV antibiotics, and intensive care. When she is sick or in pain, we are continuing to aid her in getting back to comfort as much as we can. But it is very unlikely that we would take her to the hospital for care. She wants to be home in her bed, so here she will be as much as possible.
I cannot distill our feelings into a blog post for you to read. I cannot understand them or express them to myself even. This is beautiful. This is grueling. This is intense. This is peaceful. There is sweetness and fun. There is exhaustion and pain. We are living in an in-between place and we don’t know how long our stay will be. Truly, we are in a separate world here. I can barely see beyond the walls of my house anymore. Even the beloved outside and garden that I so love… it is a gray distant land that is unrelated to this space.
Here we sit together at peace, at grief, and in celebration of a year together.
Beautiful
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