A Barb update, and a request...
Hey y’all. How have you been?
Things here have been crazy. As you may have heard.
It has actually been feeling like things are looking up. Barb is not exactly well, but she is SO much better, and is working to get better every day. It has felt a little like the string of bad luck has run its course.
This morning on the way to school, I even told Liz that. “You know, I don't want to jinx it, but I think things are looking up,” I said. “We are finding a routine and it doesn't feel like a complete crisis every two minutes.”
Liz: I think maybe you just jinxed it.
Me: C'mon Liz. It's gonna be fine. Nothing lasts forever, even a run of bad luck.
Me: (driving home) (check engine light comes on)
Sometimes when bad stuff happens, it feels like that is all we see. I know for a fact that isn’t true.
Yes. It feels like it. Goodness knows that if bad luck wanted to see, I would see nothing but that in my life lately. But I know that isn’t all there is.
Despite it all, there are still good things in my life. And for that I am grateful.
Now for the latest on Barbara.
And I have one big favor to ask. I'll get to that in a bit.
Yesterday was the first visit from Barb's in home physical therapist. Tomorrow she will receive a visit from a speech therapist, and next week, OT will begin. All of these therapists will be ongoing for at least the next few months.
Barb continues to have tests and consults. The rheumatology consult was doctor to doctor (she was not examined in person, it was just a review of tests and records), and the consulting rheumatologist did not see convincing evidence of an autoimmune disorder. The doctors have ruled out her brain, her heart, and now her immune system. We are still left with no good evidence and no good idea for what is causing any of this. She DOES have a spinal MRI on Friday which may provide more info. We'll see.
That's where things are. It is frustrating, but we are working forward with our new normal.
The good news is that Barb has some energy back and seems close to her "old" self sometimes. There are some lingering cognitive issues, and her body is still easily fatigued. We are all hopeful that the in home PT, OT, and speech will help.
Justin has one goal for mommy. That she is able to walk up the stairs to play with him in his room, and read him stories. To be honest, I think that is her biggest goal too.
The last few weeks have been among the most challenging of our marriage. And we have gone through a lot. And we are still here. And will be here after this.
We are grateful for all the ways that people have reached out and sought ways to support us. The meals, the dog walks, the rides to appointments, the time with Justin. All were hugely helpful.
Now for the big ask. One big favor you can do to help Barb, to help me, to help our family.
Barb is turning 50 in about a week - October 9.
This is not how we pictured that day. A few months ago we had hoped to have a big outdoor party at our house, with friends and family and people from around the country coming to celebrate with Barb. Between her health challenges, the Delta variant, and life in general here in 2021, that won't happen now.
I still want to make her day as special as possible, and YOU are a big part of that. YOU. The people who have supported her. Her family, friends, colleagues, and community. YOU can still make her day special.
Here is what I need.
Those of you who have had your life touched by Barb's incredible spirit and presence... I would like for you to make a happy birthday message for Barb. It doesn't have to be some fancy Hollywood production. Just a simple, short (less than a minute) video or a picture or even some words sending your thoughts and wishes for a complete recovery and a happy birthday. That's it. A good friend had the brilliant suggestion to create a Kudoboard for Barb's birthday - one central place where people can upload videos, photos, gifs, messages, whatever. PLEASE PLEASE PLEASE add your video (or whatever you feel comfortable with) to Barb's board.
Just tell her how you feel. Be real and be open. That's how she is.
Thanks y'all. For everything.
Some of you will see this same message in a lot of different ways (text, email, Facebook, etc.) If you get the message multiple times, just know how much it would mean if you made a short video. I really want to do all I can do to make her birthday special.
Thanks for reading. The newsletter will return to a more normal (hopefully!) schedule after Barb’s birthday.
In the meantime, be well.
And keep pounding the rock. Even when your back is sore and your hands blister. The next swing of the hammer may be the one that finally makes it break.