Hospice….it’s along the lines of other words spoken in hushed whispers….cancer, terminal, dying……
The word hospice makes me squirm. I always felt it was trying to cover up a large gaping wound with a tiny band aid….Death and dying are awful but it’s okay because we have hospice. Here, paint a picture, you’ll feel better.
My daughter qualifies for care under the Hospice Waiver in Colorado. It’s not hospice in the traditional sense, my daughter is not terminally ill but it is for children who have severe conditions.
“That is an awful name,” I once said to a fellow special needs mom, “I will never put my daughter on that waiver. I will never put it out there that she qualifies for something hospice provides.” I felt that putting Samantha on the Hospice Waiver was signing a sentence for her.
A year later, many state Medicaid cuts and watching other waiver wait lists grow, I decided perhaps Samantha could benefit from the services. Samantha needed in-home music therapy. I perhaps needed a little counseling for the serious bout of denial I was having and we could all benefit from the respite provided.
I have discovered along this journey that the people at Hospice are really, really wonderful. Our music therapist shows up at our door every week with a guitar and a bag full of musical instruments. Samantha’s face lights up at the sight of her. She loves the guitar, the drum, and I always get a little teary watching Lil’ Miss engage in something she really loves.
My counseling services are actually at the Hospice center. I thought I would walk in and be overwhelmed with a sense of sadness and grief. But honestly, I don’t think I’ve ever been to a more welcoming place. The candy bowl in the front is always full of the ‘good’ chocolate. The walls are painted warm and comforting colors and the lounge chairs in the rooms are soft, cushy and enveloping.
My counselor and I talk about the ‘unmentionable’ topics, the death of our son, Samantha, our unknown future.
She does not give me the sad eyes that we get from so many other people.
One day I said to her, “You know I used to think this place was so tragic; death, grief. It sacred me from the outside.”
She laughed, “We get that a lot from people. I’ve been here so long I don’t think of my job as sad; probably just like you don’t think raising Samantha is hard.”
Hmmm….I like this lady, she gets me...perhaps this whole hospice thing isn’t so bad. Another piece of chocolate? Why yes, I think I will.
Heather Schichtel is a mom, writer and advocate for her daughter Samantha. You can find her at Samsmom