Often, I think events in life are best compared to a marathon, not a sprint – it is all about endurance. Marathon runners talk about the different phases of the run. At the start, the task can seem overwhelming; it takes the first few miles to feel out the road, loosen up, and get into a groove. During the next phase, they coast on autopilot, able to find comfort in the repetition and steady nature of the run. Somewhere towards the backend of the run, they hit a “wall” – mentally and physically. It always seems impossible to continue beyond the wall – it is the moment when many runners quit. But the thing about the wall is that if the runner can figure out how to push past it, they usually find their second (or third) wind to carry them on to the home stretch. It isn’t always pretty – sometimes they need to slow things down or even walk, but getting beyond the wall is all about determination and willpower, refusing to quit.
I think this week, I might have hit my “wall.” The daily grind of the trip to Baltimore and back, the screaming baby on the trip, the frustration of the move to Levindale and starting all over again with the nurses and doctors there…some days, it feels like this bad period will never end. Most people tell me to stop…just give up on the run because it is “too hard” or “too much,” but, like most marathon runners, I know that if I just hang in there and push through the wall, I”ll find that second wind, and when I reach the finish line, I will be proud that I hung in there.
I have definitely missed the staff at Johns Hopkins this week…while I did not always trust the doctor there, or agree with his decisions, the nursing staff was incredible. I felt comfortable that they were administering medications on time, that they cared about my mother, and that she was getting the attention she needed. I especially knew not to worry if Donna, Jeanette, or Philadelphia were around – they made sure to give my mother some personal support and comfort, too, and I think we have yet to find that at Levindale.
Today was overall a good day. Maya woke up around 8:30, and I nursed her. Micah woke up a little while later, and Elliot got him and brought him downstairs. We fed him eggs for breakfast, and we all hung out and watched a little tv. Elliot had decided to cancel our babysitter, Christin, for today so that he could bring Micah to synagogue for Simchat Torah. After Elliot and Micah left, Maya and I got ready and drove to Hopkins to meet my parents.
While I was waiting for my parents, I received a call from one of my mother’s cousins, Bernice. It was wonderful to hear her voice, and I had not spoken to her in many years. She told me some stories of my mother and grandparents, and I was in tears as I thought about them and missed them terribly. I promised her that I would have my mother call her back to talk later in the day.
My parents arrived as I was finishing my call with Bernice. Radiation went quickly again. Elise stopped by for a quick visit, too. My mom was also asking questions about going home, so we had another discussion about our plans for that. While we were there, I sent my brother a text asking if he new the radiation tech’s friend…turns out, it is the person my brother supervises! Small world.
We all headed back to Levindale, and we arrived there around 3:00. I had a chance to speak to the nurse coordinator again to clear up a few more concerns, and I got a copy of my mother’s therapy schedule for the weekend. She has therapy at 11 and 1:30 on Saturday, but is free the rest of the day, and Sunday therapy is in the morning.
My mother was quiet again most of the afternoon. We chatted a bit, she called her cousin Bernice, and we took some video of her with Maya. She gave a bit of advice, and she talked a lot about how much she loved her (and the other grandchildren) and she told us what she wanted for them. I hope that we can make more videos of my mother – I think she has things to say to all of us, and I know that I will value seeing her speak and hearing her voice in the future. When my mother was doing her video with Maya, I realized that she called Maya sweetie pie and baby cakes – two of my nicknames for her. I realized that most of the things I call my children I stole from my mother…boo, punkin, sweetie pie, baby cakes, bug. My mother used to always call me “bug” (short for love bug) or punkin (a play on pumpkin pie). She would say “whatsa matter boo” or “whatsa matter bug” when I was crying or upset, and she would say “c’mere babycakes” when we cried. I guess from all the years of hearing her say that to us, to the babies, etc., I stole it all from her.
I stayed with my mother until dinner time, and left around 6:15. The ride home was a little longer today, but not terrible. Micah, Elliot, Maya and I had a nice evening together. Micah is getting so big – he now says “uh uh” and shakes his head “no” when he does not want something. I probably taught him that accidentally.
Maya has had a rough night…she just does not want to go to bed anymore. I nursed her to sleep at 9, but she woke up again. She fell back asleep around 10, and we put her in the swing for a while before moving her upstairs. She woke up early this morning, and I’m late posting the blog becuase I’ve been nursing her.
I guess I can say that it feels like I might finally be pushing through the wall. In my head, I’ve started the countdown. Thirteen more days until we can try and bring my mother home again (or at least bring her back to Montgomery County). Twenty-five if they choose to extend radiation. In that time, we have to finalize renting a place and line up caretakers for my mother. I think we need to start making phone calls and conducting some interviews, and generally getting ready. We need to have an address so that the equipment we need can be ordered and delivered.
I hope it is my only wall. I know I have the home stretch in sight. We just have to hang in there a few more weeks to get there. I have no illusions about what will happen when we get home. What I do know is that we can stop all the driving, that we can give my mother one-on-one care with someone we can educate and my mother can begin to trust, and we can all start feeling better knowing we are together again. As my mother said today, her whole body just relaxes when we walk in the door – she physically feels better just knowing we are there. The thing is, so do I. I worry that Mom is scared, or that she cannot find her call button, or that she is in pain, or that the nurses do not know the routine and are messing up her medications again.
There have been many times in my life when this comparison has proven quite apt…especially now. I can remember my mom telling me at challenging times in my life that bad things always end…you just have to hang in there long enough for them to run their course. They don’t always end the way we want, and we cannot always go back to where we were, but life constantly moves forward and changes, and there are always new and good things ahead. So, I’m hanging in there…waiting for the new and good things ahead.
I also just wanted to thank a few people this week…Rochelle & Scott for sending a beautiful bouquet of flowers to my mom at Levindale, and Tammy who sent us cookies, and my friends Dorann, Dawn, Ellen and the Stephanies who have bought me a block of “me” time.