We are almost at the end of Week 2 (it's Thursday) of the Stay the F#@k Home Campaign. I've done a little grocery shopping but that's it, other than walking Cannon up and down the empty streets of Holliston, and the highly anticipated daily walk to the mailbox, from where I stare longingly up the street, looking for any sign of movement.
I am actually feeling extremely grateful. My day to day has not changed much, like I wrote last week. We have settled into a very doable routine. Usually I am frustrated that Harry sleeps so much, because I feel like he is sleeping through life. But, I remind myself that his body needs it. His epilepsy is exhausting, and he regularly needs to literally recharge.
Lately though, I must admit I am thankful. As he sleeps through the morning, I can take my time waking up, enjoy my coffee, take Cannon for a walk, engage a little with Noonday customers and photography clients, and think about what Harry and I will do for our ONE DAILY ACTIVITY. That's right. I have very intentionally set realistic goals for us. If I try to plan too much with him, try to force him to "work" or "create something" I will be sorely disappointed. My goal for each day is for us to do something together that brings us both joy. If that means cuddling on the sofa and watching his new favorite movie, or reading Harry Potter, or just closing our eyes and listening to music, so be it. I have accepted that some days will be nonproductive in the tangible sense of the word, but if I can appreciate just being present, and he is content, then I'm doing ok.
I'm also documenting on his calendar that ONE thing we did each day. A few things we have done: FaceTimed with a friend; watched the live videos posted by The Cincinnati Zoo; watched and listened to Read Alouds by various celebs as well as his Rock Star camp director; we had an Irish music dance party on St. Patrick's Day; we took our dog for a long walk. One day he wasn't feeling great (allergies are a bear right now) and I simply wrote that he napped, like the champion napper that he is. Every day is different, and spontaneous. Whichever of his developmental skills we can incorporate into our day, great! All we can do is try.
Today was really amazing! And I will cherish it and I promise myself to not try to duplicate it. We will have many amazing days, and many quiet days, in the weeks to come. Today Harry talked to his Pop Pop on FaceTime, and he helped me make sweet potato gnocchi from scratch! I think I'm as proud of him as I am of myself! I hope it tastes good. It was definitely fun to make. I am so grateful that Harry was awake, alert, and ready to do something fun, and even let me get some pictures! This is an example of posting the precious moments that in no way reflect the majority of the day!
Ugh. It's March 20, 2020. In the US we are finishing Week 1 of a new way of life thanks to COVID19. They say you should document your experiences, so here I go.
Harrison was out of school last week Wednesday and Thursday with allergy symptoms. Holliston closed school Friday, and I was actually grateful that Walpole, where his school is located, was open on Friday. I knew that was going to be his last school day for a while. And it was a good day.
Since I don't have typical kids in the house, I haven't really been able to relate to my friends as they attempt to all of a sudden be Homeschoolers. Honestly, my days have been no different than any given non school day. Actually they have been a little better, because I have discovered so many resources on Facebook that amazing people have shared- celebrities (Betty White reading Harry the Dirty Dog!) and our own camp director Melissa posting Read Alouds, musicians posting free performances (Michael Franti is the favorite here!), LIVES from different zoos around the country, Broadway shows being streamed, and things we haven't even tried yet like virtual rides at Disney and virtual museum tours around the world! What a plethora of culture this world has to share and it is amazing to see so much generosity and creativity from so many individuals and corporations. It would be so great if we as humans across the globe could adopt these kinds of efforts as a new normal. It's cliche, but everyone really truly is coming together, because for the first time in history the entire population is in the same boat.
I've also been connecting like crazy. Skype call with Andrea in Jerusalem, group texts and FB group video chats, and looking forward to Zoom Cocktails tonite with my girls.
I've had a very calm feeling all week, like, this is weird but I will just go on ahead and do what I do, with a lot fewer errands and coffee dates and dr appointments. I've always said John and I have been spoiled with child care because Harrison is medically complex and qualifies for nursing and PCA help. I still feel that way, although we have cut back. Only nurses who are not around several other patients can come over. It's good for me, breaks up the tedium. Harry has been easy, he's been either sleeping or sitting on the toilet watching a movie all week. Like I said, no different than any given Saturday! It's been the same quiet, and the same avoiding working out because I know as soon as I start he will wake up. The same frustration of having all of these great fun ideas of things to do with Harry but never getting to them because he is just not interested. I'm hoping with all of this time stuck at home, we will experience more positive interactions, and that will be our new norm. Not that I don't like cuddling with him, which is mostly what we do! For now, I am learning how to adjust my expectations, again, and if napping is on his agenda then so be it, do what you do best kid! When you are in the mood to play, we will play.
Today is actually the first day of this pandemic that I have been depressed. I've felt deep sadness and frustration and anger, but today, I read a post about nurses needing masks and gowns, and it just hit me. I read a post by a friend who is a labor and delivery nurse at Newton Wellesley, and all I ca think of is those brand new and soon-to-be parents who are there, totally in harm's way, because they are healthy and bringing a new life into the world. And then I started thinking about the special care unit, where Harrison started out, and those babies who are already fragile having to be isolated even more-so, and the nurses caring for them, and their parents, and what if something that can on a normal day be controlled or managed, can't, because there is not enough staff or equipment. Harrison was having trouble breathing. He would not have lasted a day.
