I am not even sure where to begin.
I'll begin with Friday. Friday I went to see the Rabbi. And though most of what we talked about is really too personal to talk about in my blog (even though I pretty much tell you everything), you should know that I felt comforted after I left. One thing that he said to me that has now become my new mantra is "You are more than your biology". So now I know that I am more than my UC and my missing colon. I am more than the ALS and my curly hair. I am what I give, and love, and do, and inspire, and feel. I am more than my biology. And when my biology, or my body, is no longer here, I will continue to give, and love, and do, and inspire, and feel. All based on how I did those things in my life. They will continue to go on.
Meeting with the Rabbi was emotionally exhausting. I went out to lunch with my parents which has become one of my absolute favorite things to do. I came home intending to nap, but I just couldn't. Then friends came over, and I loved visiting with them, but I'm afraid I wasn't the best company because I could feel myself just fading away from exhaustion.
At 9am we had our family photo shoot. The photographer came to our home and we took a bunch of family photos - even some in the snow! I can't wait to see them.
I took a three hour nap. It was much needed.
Adam's cousins Eric, Jennifer, and Eli came to visit from Cincinnati. We had a great visit. Adam's brother and sister in law and nephew came over and we hung out and talked and caught up and reminisced. It was really lovely. I wish we lived closer to them as we all get along so well. We ventured out in the really icky, snowy weather and went to Rossis for dinner (yum!). We came back here for dessert and introduced our Cincinnati relatives to WaWa coffee.
Most of the day I had this annoying cough. It wasn't a "I have a cough, cough". It was more like I was having a little allergy problem and I was coughing to be able to catch my breath better. It was a little disconcerting, but seemed to be manageable. I never felt like I wasn't able to breathe, and I was trying to keep my body calm and serene so I wouldn't panic and make it worse.
I went upstairs to go to the bathroom and the toilet lift wasn't on the seat, but I really had to go, so I used the toilet without the lift. I couldn't get up when I was done. Our bathroom toilet is really low and the bars were of no help to me. I called for Adam, but he was downstairs with our company so it was difficult for him to hear me. I sat there for a little while, thinking about the craziness of being stuck on the toilet. Then I began to laugh. I was stuck on the toilet. This is what it was like when I had UC. I was always "stuck" on the toilet, but for different reasons. Eventually Adam heard me and came up to help me. He felt bad, but really it was okay.
Going out in the snow in a wheelchair is a challenge! We got to Rossis alright, but the handicapped spots were only sort of plowed. No fault of Rossis. Too much snow to keep up with. So Ean pulled me backwards through the snow and got me into the restaurant with very snowy wheelchair wheels and snowy sneaker feet. Then, of course, I had to go to the bathroom, so I asked Gillian to take me. I was able to manage in the stall until I had to get up. My feet were wet and snowy, the floor was now wet and snowy, and getting up myself was like being on a slip n slide! So for the first time, Gillian had to help me in the bathroom. It was something I had dreaded - my kids helping me in the bathroom, seeing me that vulnerable. But she handled it like a trooper. It probably won't be the only time.
I ordered a Rossis burger with provolone and broccoli rabe, no bun. Delish. Another first. I wasn't able to cut my food. Adam had to do it for me. My hands just don't have the strength anymore. There are worse things, right?
Everyone back at our home by 10 am. Bagels, lox, whitefish salad, cucumbers, tomatoes. When the Dauers get together, we sure know how to eat! In between all the eating my reclining lift chair got delivered. Everyone worked together to move furniture and fit the chair in the living room in such a way where I can transfer in and out of it myself and still be a part of the gathering when I use it. I love it!
The chair. I just sent a thank you note to the organization that funded the chair for us. They are called the Ellie Reynolds ALS Foundation. I explained to them something that they already know - that the chair is not just a chair, and the chair is not just for me. The chair is one more tool to make our lives just a bit more normal. The chair gives me the opportunity to sit and visit and talk and hang out just like a non-ALS person. The chair lets me be a part of this:
And though this is just an ordinary scene of an ordinary day, it is what I crave and desire every waking moment. I treasure the small moments.