Hi. Well, we made it home on Saturday, May 9th (my Mom's birthday). It was a long day. We took an Uber to the airport. When we landed at Reagan, we had to take the shuttle to the rental car place. Then we had to wait there for a while. Then we finally got the car and drove home. I think we got home around 7:30pm. I think it, I say it - every time - but I cannot imagine how hard all that travel is on her after all she's been through.
The next day was Mother's Day. It was a beautiful day. But, we were just too tired to enjoy it. We did sit outside for a while, which was nice. Harlie didn't come downstairs at all. So, as far as doing something "special" well, that was just out of the question. We needed to catch our breath. To be honest, it was a difficult day. Not only did we just get through a grueling week, with another grueling week of recovery ahead, it was my first Mother's Day without my Mom. It was weird. With all my feelings, I just didn't have it in me to do much wishing other moms a Happy Mother's Day. I stayed off my phone and just rested as much as I could. We had dinner with the boys, Tom made crab cakes, which I requested. The boys gave me nice cards and wonderful gifts. They are so thoughtful and sweet.
Monday was Murphy's 22nd birthday. He didn't have to work at all, which was nice because that meant I got to spend almost the entire day with him. He asked me to help him work on going through stuff in his room and packing. I also wanted to get him new bedding, so we went to Target and he picked out all new stuff for his bed. He tells me he is going to make his bed every day when he gets into his apartment. Haha! We'll see. We gave him stuff for his apartment, like a set of pots and pans and a cast iron pan that he wanted. He bought a kitchen island off Facebook marketplace and Tom fixed it all up for him and painted it. He's in pretty good shape, really.
Harlie's Electrophysiologist (EP/pacemaker doc) moved us to 9am on Tuesday in Fredricksburg so we could get out of there in time to go to Murphy's graduation.
As far as how it went... it went as most EP appointments go - they essentially say the same thing - the leads are tricky, but they still work. She's stable for now. Honestly, they do an awful lot of fiddling around with her device for me to believe that she's "stable". From my perspective, it seems like they are putting in a lot of effort to turn around and say she's stable. The EP put a Holter Monitor on her for the next 24-48 hours so they can see if they can get more data. She said that she really can't tell me if she'll need a replacement in the next six months or in the next two years. They just have to watch her closely. It's kind of frustrating. No, I don't want to rush into any surgery - especially right now. But, at the same time, I don't want us to end up forced into a surgery with no time to prepare. Or worse - have a catastrophic failure that ends horribly. Or, everything will be fine for the next two years. Seriously? How are parents supposed to live like this?!?!?
I told her that Harlie has camp in Indiana next month. Are we risking too much by sending her? I don't want to live in fear and have her miss out on valuable experiences (this is the last year she can go to camp since she will be 20 in September). But, I also don't want to be negligent and dangerous. We have an anniversary trip to Spain planned for the end of August/beginning of September. Should we not go? What if we go and something happens? She said she wants us seen by EP again on June 4th (her EP doc comes to Richmond on the first Thursday of every month). We'll have that conversation then. Hopefully they will have the results of the Holter monitor by then. As far as our anniversary trip, she said don't cancel anything yet.
I just hate living like this. When I started to tell her doctor about camp and our trip, I started to cry. I HATE it when I do that. Amazingly, there's only been a handful of appointments when I've cried. On one hand, I feel weak/out of control when I do that. But if you think about how many more appointments when I HAVEN'T cried - I'm like, hey, look at you! Haha!
The bottom line is that life is kicking our asses right now. Normally I can keep myself somewhat contained. But, I just don't have the energy required to keep all my feelings contained, so my feelings are spilling out all over the place. This makes me want to go home and not leave and not see anyone.
Anyway, we left there and headed back to Richmond. It was a quick turnaround since Murphy had to be down at the Siegel Center by 1:15pm. Caylee came over to hang with Harlie while we were gone. Of course, Harlie wasn't feeling up to going. She missed Murphy's high school graduation because she was in the hospital. Now she missed this one. Ugh.
There were about 800 students participating in the graduation ceremony. I assumed the students were in alphabetical order, so when the students first entered and filed into their seats, I wasn't really looking for him. I just figured he would be in the middle of pack. But, something made me look up at the jumbo tron thing and as soon as I did, there he was! It was like intuition. He was in the second row, and we watched him walk in. It was like he could feel us because he looked right up at us and waved. That is so crazy because the place was packed and we had no idea what the set up was or where we would be. I thought there was no way he was going to see us. Crazy! It's like he could feel our love, haha!
I mean, just look at how cute he is!! 😍 Haha!
I forgot to mention that on Monday, I started to feel sick - like a cold sick. When we sat down, I realized I forgot to grab some tissues. So, Cooper went to the restroom and grabbed me a handful of toilet paper. Classy. Anyway, after seeing Murphy's cute face, I just started to cry. Ugh - there goes my feelings spilling out all over the place again. I mean, I wanted to excuse myself and go sob somewhere private. But, clearly that wasn't an option. I had to get myself together.
The President of the community college spoke and I really liked what she said. She said she gets asked about the type of student that attends the community college. She said that they are extraordinary. To prove her point, she asked the graduates to stand if they are the first to earn a degree in their family. Then she asked the graduates to stand if they are a parent or the primary caregiver. Then she asked the graduates to stand if they had a full-time job while they were in school. Then she asked the graduates to stand if they were getting their Associates Degree before they graduated high school (there is a program where you can earn your associates in high school). By then it looked like every graduate was standing. It was pretty cool. She also said that the youngest graduate is 17 and the oldest is 72. Pretty awesome.
He chose to go eat at Stella's to celebrate (that is the restaurant where he works). I just love going there because I get to hear so many good things about Murphy. So many people come up to us and tell us how much they love him. It fills my heart and I really needed it right then.
Later that night, I took a down turn and really started to feel bad. I had a terrible night and woke up feeling even worse. This has happened before after a hospitalization. I just get so run down. It is my body's way of telling me to chill out and recover. As if I have any control over that. Trust me, I want to chill out. I love to chill out. I wish I could chill out.
Speaking of not being able to chill out... I received a reminder for her next bronch (a follow up from her last bronch in February). It is scheduled for May 27. I just can't do it. I'm going to have to reschedule. But for when? Camp is June 14. I don't know how or where I'm going to fit it in (maybe after camp if the doc thinks it can wait that long). I just can't do it so soon. She has five doctor's appointments on her calendar before June 12th. That is ridiculous.
Today is Wednesday and I convinced Harlie to come sit outside with me.
I don't know when she will return to school. Definitely not this week.
The next hurdle we have is to help Murphy move into his apartment on Friday. So, we have two more nights of him sleeping in his bed in our house. I know, I know, this is great. It is! I have full confidence in his ability to navigate life. I am so proud of him. But, oh, I am going to miss him so much! Feelings aren't either/or. You can have lots of feelings at the same time - like I am both happy and sad about him moving out. Like I said, we are getting our asses kicked right now. I wish so many life changing things didn't happen in such a short time, but sometimes that is just the way it is.
Well, I didn't get this finished and out on Wednesday. So, now it is Thursday. Harlie has not come downstairs today. But, I have been able to remove the dressing and not put a new one on. I'm just leaving it exposed to the air now. Tomorrow we will remove the sutures. Hopefully that goes well. I also removed her Holter Monitor and put that in the mailbox to be returned.
That's it for now. Thanks for reading!
Much love,
Christy xo
