Jamie is here working with Kristin (PT) and Cindy (OT) in a joint session. They’re working on her flexibility, building muscle in her core and just focusing on basic motions and movements. Jamie already had one OT session, WC (wound care) session and a representative from DADS (a government program that helps with home care assistance, among other things), and all that was before noon. Mom is taking a much deserved morning off. It’s very well deserved. I know everyone probably is impressed with mom and the amount of work she’s putting in, but I’m here more than anyone else besides her, and there is no way… no freaking way… that I could do mom’s job. (PS - Sorry about the picture, mom. Couldn't find a better one of you with Jamie at the time...)
Look, I slept here last night, and between the crummy cot (which, for the record, is way better than the couch at St. Joe’s and WAY better than the one in St. Joe’s ICU), the construction upstairs in the early morning (and late morning, and now… and, when I finish this post, there will still be construction above us going on), and the other hospital goings on and it makes for a pretty demanding situation. Jamie is becoming more and more able, but she is far from independent. Jamie can do a lot of things that take place in her bed, but she can’t leave the bed yet on her own. So, if she is thirsty, hungry, needs to barf, needs to go potty, someone (mom) is getting it for her. She does all this while coordinating with an alphabet soup of state agencies and programs – DARS, DADS, Medicare, Medicaid, Social Security, CLASS, etc. Then, before we know it, Jamie Peroni from Hanger is ready to visit and talk about the next step in getting Jamie’s prosthetics. Let me tell you something about the prosthetics industry: there is so much information out there and so many types of prosthetics, joints, sockets and feet; so many uses for the prosthetics; can they go in the water?; what’d the difference between the temporary and permanent ones?; how long for each? You’re getting the point, right? In mom’s spare time, she’s helping push legislation to require all freshman college students in on-campus dorms to prove that they’ve been immunized against meningitis. This has been a well documented and time-consuming effort on our part, and thanks to her and to you all, SB 819 (The Jamie Schanbaum Act) has made it all the way through Senate and is going before a House Committee this week. And you better believe that mom doesn’t ever want to leave Jamie alone, so mom has also become an expert at finding people to stand in for her when she is out doing everything else. And this “everything else” includes going to the grocery store for the house, dropping Roni off at school to be nice, cleaning the house (where we take care of two cats and a dog), helping arrange Roni’s graduation party, and then whatever else comes her way. She’s so caring and giving that even when she doesn’t have much more of herself to give, she is the first to raise her hand and be willing to help. [An example from yesterday: Sara our cousin had her windshield smashed pretty badly, and mom came to the rescue because our Aunt (mom’s sister) was in Brownsville and obviously couldn’t come help; helped her file a police report, clean up the smashed windshield and console Sara. Really, just a shitty situation, but mom didn’t ask any questions and knew that she had to go help. That’s just the person she is.]
Did I mention that the above paragraph describes the “ideal” situation, where nothing goes wrong… where there’s no bumps in the road… there aren’t any new infections or complications… no sudden changes of plans… no big and unnecessary dramas? Well, let me tell you: Something ALWAYS goes wrong; there are ALWAYS bumps in the road; there’s ALWAYS a new infection (today, it’s MRSA on her knee caps, AGAIN); there’s always unnecessary drama. And, mom is always there to handle it. It all comes to her and sits on her desk. Jamie has a slight change in medicine? That’s something mom needs to remember. Jamie meets with Jen Griffin or Mike Segal? Mom wants to be there for that too. Everything. And I mean EVERYTHING falls on mom’s desk and she deals with it all with a smile on her face (usually). There’s so much for her to deal with that I would completely understand if she just became robotic and went through the motions, but she’s not like that. She d oesn’t want to know that Jamie is being given Lyrica, she wants to know why. She wants to know everything about everything. She’s amazing, and that’s the whole purpose of this post.
Yesterday was mother’s day, and I just don’t think it would be possible for us to ever articulate how much she means to us. It doesn’t seem fair, really. I mean, every year, every mother, regardless of what they do, gets one day in their honor. But for Patsy, she’s does so much for so many people this year and we owe her so much more than one day in her honor. For once, I’m at a loss for words. If you’re reading this, then you know that I can write up a storm, if I’m so inclined, but I don’t think I can find the words (if there are any) to describe how much we all owe to Patsy for what she’s done over the past 6 months. That paragraph I wrote (above, about what all she’s done for us) is woefully incomplete. It also paints an incomplete picture – just imagine doing more than you’ve ever done in a day, for someone you care more about than anyone else, then do it 24/7 (literally). As I said earlier, no one knows more about what mom does than I, and I know one thing: we couldn’t do this without her. She’s better than anyone we could ever ask for, and hopefully she forgives me for being a day late on posting this Mother’s Day letter.
We love you, Mom! Rest up well. There’s only a few more years left. :)