"One foot in front of the other produces the next step. Just take one at a time and see what comes next."
That text arrived on Thursday as I sat at my desk about to depart. I was texting with a friend who was in a place so many thousand miles away that I don't know the number. I only know he is in the future, living a day I am not in yet. I told him I was frozen at my desk, that I didn't think I could handle it.
I was going home tomorrow, home to see my parents both of whom are failing in their own way. I spoke to Mom yesterday and she said the word hospice to me and then when I took a deep breath and said "Why hospice?" she played it off. We all know why hospice. But I let her convince me it wasn't like all that, because I needed that to be true.
I packed my travel backpack and shortly after my kids went to school my husband drove me to Atlanta Hartsfield airport.
I am sure people thought I was weird taking a picture of it. I don't even care.
One foot in front of the other, occasionally snap a picture.
Mom's team of doctors have said no to the transplant. She has a heart defect that would have to be fixed first which would be open heart surgery. They don't believe she can survive that surgery much less the transplant surgery. Her liver is failing, she has a kidney failing (or both I can't even remember). My mom is dying. Whither hospice? Thus, hospice.
I cried my eyes out in a bathroom stall inside Atlanta Hartsfield, then I pulled myself together, fixed my makeup and headed toward security. I'm a pro. Shoes off, laptop out, passport open, right through the busiest airport in the world like an ace.
One foot in front of the other. Just keep walking. B gate. B16. Ride the train, two stops, then go up, turn left. Just keep walking, I told myself even though the world got heavy and sometimes seemed like I wasn't in it.
It was a welcome few moments of distraction.
My flight to Indy did not include Biscoff cookies and frankly that's a failure on all counts. Stupid Delta, where were my cookies? WHO WANTS PRETZELS NO ONE! I had a coke and my stupid tiny pretzels. Perhaps I was meant to feel like a giant? Unsure. My friend Tim who is simply a good egg all around picked me up and drove me to the hospital to meet Matt and my mom.
Mom looked about the same, and we immediately started speaking of things at hand, in the matter of fact way that is my mom's way. She and my brother had learned that if they started hospice NOW she couldn't get any PT and she needed a little PT to help her be able to get up to go potty. Even as sick as she is, there's no reason she can't do that at this point so why would they NOT want that. She's in her right mind, she doesn't want an army to have to help her go potty. So we have all the hospice paperwork but they had decided, and I agree that while the time to bring them on deck might be coming, it hasn't arrived.
The thing is, Mom isn't going to get "sicker". This is it. this is as sick as she gets until the final turn of the wheel and this thing kills her. She has medicine to flush her ammonia and a new port for us to drain the fluid that gathers inside her due to her failing liver. Matt and I learned how to do it, it's not hard, and it changes EVERYTHING about how she feels. A little PT to grant her a tiny bit of independence and she would have a dignified close out to the journey of her life.
I don't blame her. That's such a small thing that's denied so many older people (like my Dad) due to their illness. Going to the toilet on your own is a dignity, and so I'm hoping that a few days of PT will grant her that back -it will also grant my sister in law and brother a tiny relief.
She always told me that some day when she got old she would live with me. She said she wanted a little room with a bed and a comfy chair and a TV. Matt and April have given her exactly that. I laughed a little when I saw it, they closed off their dining room and made it a special room just for her. I would have had her live with me in a heartbeat, but her doctors are there, her world is there and only mine is here. I just feel bad that my brother and sister in law shoulder the day to day stress of this.
"I'm afraid you're going to be devastated if I don't tell you," my brother started out his text to me, to tell me that there was no hope to save our mother. He was right, he knows me well. I kept it together and managed to keep moving, keep talking, I might not have done so well had I been surprised with the reality of it all face to face.
My niece gave up her room so I could sleep there. I didn't feel tired. I felt heavy. I felt pressed on, like gravity had altered and I was fighting new rules of existence I didn't know. I laid in her bed and thought "I'll never sleep."
I felt pretty good for about two minutes when I woke up, until I remembered everything.