Earlier this week Bryan and some of his classmates performed in a Bell Choir at a local nursing home. There were about a dozen young men each dressed in white button down shirts and wearing white gloves. Bryan has done this before, but last time they were just in their school uniform, this time the white shirts and gloves gave it an air of formality which I think everyone embraced, especially the kids. Bryan was very excited to see us there and he is always quick to give us a thumbs up. He is super affectionate and loving. Many of the kids blurted out things during the performance or after, but that’s part of the charm of autism. One of his classmates said “that was great” after each song. The audience, as you can imagine, at a nursing home was filled with many elderly residents. Sitting behind me was a very old man with an aide. At the end of the show he called out to get my attention. He said(I am quoting because I wrote it down right after)”I am 97 years old but I am very observant. Your son has so much goodness in him.” Little did this man know that his kind words, his sweetness brought me back to life. The last two weeks or so has been a huge blur. My dad had open heart surgery on November 7. He’ll be in for 4 or 5 days, they said, and then he will be home recovering. It is November 19 and he is still in Cardiac ICU. While we are confident he will recover, the post operative series of events has been extremely stressful. When your days and nights revolve around going to and from the hospital, to work, to home with kids and their issues, dreading the calls from my mom’s Alzheimer’s facility, you get a new appreciation for just about everything. My sister and I were in the waiting room during the surgery and my sister’s phone rings and it’s my mom’s facility. We looked at each other like no f-g way, that can’t be happening. Trust me, they are not calling to tell you she just ate breakfast. Luckily it wasn’t anything major, but the reality of the responsibility upon us now is colossal. The first few days I couldn’t sleep and found myself calling the ICU during the night. Now we are in this crazy rhythm of managing our lives around visiting my mom and getting to the hospital. It always seems like when you are in crisis mode you think how are people just going about their business? It’s a strange sort of fog and alternative universe. We are, however, incredibly fortunate. The support network we have is unparalleled, from family, to friends, etc. We need you, we love you, and we are grateful. One thing that always gets me during a time of crisis is the tiny or minute acts of kindness or sweetness not unlike the man at the nursing home. I truly think a smile is the most underrated thing on the planet. To smile at a stranger when you are feeling low and they smile back, it’s a little magical. I know this may sound corny, but that minuscule connection to normalcy is powerful.
There are these two ladies who clean up in the ICU. They are warm and sweet talk my dad. They just make me happy. Don’t get me wrong, it’s not sunshine and roses. I did have to Jane it up to one of the doctors and handle some nurses, but overall, I am completely impressed with people and their genuine kindness. I am also so grateful for things that work well. On Wednesday I had to go to the dentist at 7:20am. I figured ok I’ll go there and then to the hospital and then to work. WRONG, the tire light went on in my car. UGH. So I went at 6:45 and put air in my tires (yep, I am a nice Jewish girl that knows how to do this) but it didn’t work. I called the car dealership, got an appt and a loaner. Do you know just the reassurance from the Service Manager that this could happen made me cry. Something works the way it’s supposed to, much to celebrate. At a time when all was off in my universe the certainty of getting my car fixed anchored me for the morning.
I know that it has been a long time my Dad is in the hospital because of Bryan. Bryan calls my Dad every day. At first he accepted that Grandpa is in the hospital and doesn’t have his phone. Last Friday (11/10) they had extubated my Dad so I figured on Saturday morning he would be well enough for the boys to see him. I tried to paint the picture of the ICU situation for them so they wouldn’t be worried. You see my Dad had been up and talking, etc. I don’t sugarcoat things (shocking) so I figured that they were old enough to handle it. On the way to the hospital my sister called to say that he had a problem and they had to intubate again. I knew they could not go in. The boys were very upset and quite frankly a bit frightened. I stayed calm but I knew it was a huge setback. So now they extubated again on Friday (11/17) and I think we have turned the corner, but Bryan is so frustrated I can read in him that this seems too long to him compared to the info I shared. Bryan’s emotions are reflective of what we are all feeling. I am hopeful I will be able to take the boys in a day or so. Nothing will cheer him up more than his grandsons. It is not lost on me that he will probably still be in the hospital for Thanksgiving. Our celebration will be small but meaningful. So much to be thankful for every day.