Merry Day-After Christmas

Boring, but I suppose important information. We visited the neuro surgeon on Monday (Dr. sea-foam-green-scrubs Cerullo, not Dr. I-saved-her-life Farhat), who told us that according to her CT scan there haven't been any changes. The fluid is draining as it should be and there's no other damage beyond what originally occurred. He also shared that with this certain type of injury recovery can take a year to a year and a half. Then Wednesday was the visit to the neurologist (Dr. Castle) who said he's going to start weening her off the anti-seizure medication in hopes that she won't be so tired. Since she's never had a seizure, don't think not taken the meds will be a huge issue. He also explained that with this injury she has lost her ability to recognize humor or sarcastic intonation. And that's when we all pretty much decided to disregard everything he said. Mom made a joke about staying at Presbyterian homes long enough to learn how to fly which was really the perfect storm...Mom couldn't possibly have a sense of humor due to the stroke and Dr. Castle DOESN'T have a sense of humor (unless, like my dad has suggested, he too is a stoke victim), so chances are there's "dementia" written in red on her chart now. By the way, she was laughing as we were recounting the story.

Now, on to Christmas. Dad and I went over in the morning with coffee, baked goods and one gift for her to open. We also brought jingle bells, which as some of you may have seen were used during our caroling in the hallways of Presbyterian Homes. I believe we were singing Jingle Bells the first time we caroled through a family having Christmas dinner and I believe we were singing the Twelve Days of Christmas the second time we caroled through the same family's dinner. They didn't seem too bothered by it - in fact they seemed fairly resilient to crazy - but it's not as though they thanked us or joined in. She came home at 1:30 and stayed the whole day. It was fantastic. Even when she decided to lay down, we all just pulled up chairs in the bedroom and I sat beside her while we continued to laugh (take that Dr. Castle) and babble like only our family can.

I wouldn't say she was "pumped" to go back to Presbyterian and she's definitely not all that thrilled whenever we leave her there. It's impossible to not feel like shit when she says "ok, bye" because we all know it's not OK. She doesn't want to be alone and frankly, I don't want her to be alone. I know, I know, I've heard "you have to take care of yourself" or "your mom wants you to live your life," but trust me, those things feel less than true when leaving her. It's a band-aid rip every day - it hurts every time and you never get used to it. Right now I'm sitting in her house, in her kitchen, surrounded by her things thinking about the fact that she's probably in bed staring at the same terrible painting on the wall and giving pep-talks to her left hand trying to encourage it to move. But in less than 14 hours or so I get to go back and reapply the band-aid.

Twas the night before Christmas

It's late. I'm tired. It's possible that this will be riddled with nonsense and typos. Apologies. I just can't not write on Christmas Eve. One of my mom's favorite times. 

Growing up, Christmas Eve was a party. I'm not entirely sure how the tradition began. Chances are it was my mom's brain child. The fact that it involved costumes, performances, and gaudy Christmas gifts are all signs toward a Pam-planned event, but I don't want to go on record giving her credit without knowing for sure. Anyhow. Christmas Eve was a huge deal. It was the moment all of the kids got to perform The Night Before Christmas. We all knew our roles, the girls played the sugar plums, the oldest played Santa, and the youngest played baby Cheezits (small and honest mistake between the center of Christianity and a cheese-flavored snack). It was also the one night a year dad busted out his trumpet and "performed" Christmas tunes. We all sang along. Probably sounded as good as the trumpet. And then of course we all had to wear the "Christmas craft" which all of the girls/women had worked very hard on the night before to make as gaudy and horrifying as possible. There was the year of the reindeer socks, the year of the elf collars, the year of the fairy crowns... the list goes on. But most importantly, it was the thing that first defined family for me. We all know I don't have a huge family, at least not in the "people who share similar genetic material" sort of way. But mom made damn sure that I had family in the "you'll never feel alone or unloved" sort of way. I grew up sharing Christmas Eve with family. For that I can't thank her enough. 

Happy Christmas to all, and to all a good night. 

Relax the shoulders

I wish you all could have heard the sound of my dad's voice last night when he called. It's as if every muscle in his body had relaxed....the muscles around his rib cage, his lungs (ok, not just muscles), his vocal chords. He was breathing. Real breaths. The natural ones. The even ones.

I think I have my dad back. And it's all thanks to my mom.

Yesterday the doctor visited to check on mom's progress. He was "very impressed". Apparently everyone who has been working with mom has been very impressed. He explained that in the beginning her progress was a slow climb, but in the last two weeks she has really taken off. It's been so great that the doctor said he would personally fight for her to stay longer at Presbyterian should the insurance company recommend she move elsewhere.

Maybe it's awareness and being able to make conscious choices? Maybe it's being able to feel the improvements makes her fight harder for more of them? Shit, who knows why "all of the sudden". But seriously folks, who cares?!

No, it's not over. Clearly the road continues. But for the first time in 142 days it feels like we're not just "seeing things," that the progress we sometimes think we see is not just us trying to make ourselves feel better. It's real. Unlike the bats that live in her ceiling. Those aren't real. Right?

Post Thanksgiving Report

I'm happy to report that Thanksgiving went off without a hitch. She showed up at 12:15 and was promptly given a tour to make sure my dad hadn't run the place into the ground. And he hadn't. I even assured her that the condo was NOT full of little piles of things when I arrived - dad's signature style of cleaning or as I like to call it "squirreling".  She was proud and impressed.

We spent the day as (hopefully) every other family out there did - eating too much and enjoying the fact that we were all in one place. Near the end of the day as I sat next to her and watched her enjoy a piece of pecan pie she simply stated "I've really enjoyed today". That's all any of us could ask for. Eventually she had to leave and yes, it was hard, but nowhere near what I think all of us originally expected.

There is a certain determination to my mom (shocking, I know). It would be easy for her to play victim and for us to be wracked with guilt. And frankly that would seem would seem fair considering the circumstances. Don't get me wrong. I know she isn't happy about this less than stellar hand she's been dealt. I think if she could strangle the dealer of this hand, she would. Maybe even bite him/her. BUT, instead she's just playing the hand she's dealt. And playing it well might I add because we all know how she gets when she loses. Sportsmanship award winner she is not.

Holiday Prep

I'm home for Thanksgiving. And the first thing I would like to say is...really, who was the genius that decided to settle in Chicago? This weather is the pits. The only thing that makes up for it is the wide-eyed look my mom gave me when she heard my voice.

Meanwhile, on to all things Pam. She's still improving. It's incremental. So incremental that it's only noticeable to those who don't see her every day. Me. Things like her ability to sit up, lean forward and untie her shoes. Last time I was here she was still having trouble even aligning herself. But I know for Dee and dad it doesn't seem as profound.

I did her nails yesterday while my dad read all of us the New York Times wedding announcements. She threatened to bite anyone who made her tried to make her do exercises outside of the scheduled times. She made good on that threat, but luckily dad's reflexes are in good shape.

And lastly, she'll be coming home for Thanksgiving. Yes, it's exciting, but honestly, we're terrified. Seeing her at home, seeing the very real and very harsh contrast of who she is now versus who she was 4 months ago...it's going to be impossible. And then what happens when we have to tell her she has to go back? How do we tell her that she can't stay? But before I can worry about that though, I can't forget to order the shrimp or she'll have my head.

If you have a minute...

Happy Monday everyone.

Instead of me trying to relay the mundane details of mom's progress, I thought I'd let you just read the notes from someone who is great with the mundane....the insurance case manager. So here it is, straight from the insurance horse's mouth.

"Pam continues to make progress, although it fluctuates depending on her endurance that day.  Rebecca, an OT was on vacation for 2 weeks and noticed an obvious improvement in gait distance and independence.  Pam was dependent with dressing, bathing, toileting and is now max assist. That may not sound significant, but it is progress, and it all adds up over time.
 
Her ability to follow directions has improved as has her head control and self care skills. Pam's left shoulder pain is limiting, but she has increased tone. She's able to maintain sitting balance unsupported for an hour during therapy, which is much improved functional endurance.  She has improved in problem-solving and has reduced pushing toward her right side.
 
Therapists say she has had a good response to therapy overall.  Again, because Pam was so ill initially, her recovery will take longer.  Dr. Eliades feels she will continue to progress."

On another note, I just want to give a shout out to my dad and my aunt. I feel like I've stolen a bit of the spotlight (naturally), but they are truly the heroes. Showing up every single day - literally and figuratively. It's draining. It's all consuming. It's a Groundhog's Day experience except without Bill Murray and constant hilarity. I honestly don't know how they do it. It's a testament to both of their spirits and love for my mom. Many of you have sent me notes of encouragement and love, and those do not fall on deaf ears. So if you have a minute, I would just ask for this quick favor, give them the same love and energy that you have been kind enough to give me.

Dee: deehouston@fuse.net
Dad: stanleimer@sbcglobal.net

Warning to the universe

She's doing fine. Still making small progress, but it's progress. When will she be able to come home? No idea. It will probably still be quite a while. There is a chance that we may be able to bring her to the house for Thanksgiving, but the chance is microscopic, so don't want to get too excited. She did get her hair done! The hair angel (the woman who does her hair) came and made her beautiful out of the kindness of her heart. Didn't charge a cent, which is why I call her the hair angel. Personally I thought the grey was rather fetching, but Pam wasn't feeling it and as we all know, if Pam doesn't like it then it gets changed. The city of Evanston's landscaping department has learned that lesson the hard way. Let's just say she should add "volunteer midnight gardner" to her resume.

In the meantime, we're all just plugging along. Trying to adjust to the new normal. It's not easy. Frankly, I'm pretty pissed at the universe. Hey universe, you're on my shit list. You've been warned. Is this some cruel joke at my expense?

Mostly though, I'm just lost. Trying to look for a lesson. That's all you can do in this kind of shitty situation, right? Figure out how to adapt and how to learn something, anything, just so at the very least this experience doesn't completely take me down.

So far, this is what I've got:
1. Somewhere there's a lesson in all of this
2. No, not everything happens for a reason

I'll keep looking.

Love each and every one of you. Thank you for being a constant force. My promise to you all is that I will continue to fight as hard as she is and continue to become the human I know my mom expects from me. Until then, bare with me.