Spring 2026 Update

Hi. Just going to jump in here and try not to think too much about it. 

In my last post I listed some upcoming appointments. 

Here are some updates:

Electrophysiologist (Pacemaker) - She's seen him twice since my last post. There is a device near her bed that sends her pacemaker transmissions to Children's National every few months. They review it and let me know that all is okay (usually). In February, I learned that her heart had two events. One she's had before and is on meds for already (NSVT). The other one is new to her (atrial flutter, which lasted about three hours). So, he increased her meds and said we just need to watch her. He asked if she was sick during the time period of her events - and she was! He said we just have to really watch her when she gets sick because it really stresses out her heart. Awesome. 

Hepatologist (liver doctor) - they ordered a CT scan with contrast to try to get a better look at her liver. Normally, they would do an MRI, but they can't with her pacemaker. Basically, they were looking for potential cancer, since she is at an increased risk with the extra pressure/work on her liver due to her heart/lungs. So far, so good. 

She had her wisdom teeth extracted and I am shocked that all went well. No issues. 

Opthalmologist - all stable there. Also, sadly, I have given up on the whole occuloplastic surgery that I was trying to coordinate this time last year. That was a mountain I just couldn't move. Turns out they wouldn't consider trying to do both surgeries in the same week even, which would mean another trip to Boston JUST for her eye. I just can't even think about it anymore. 

Bronchoscopy - she had a bronch in February and it was really just a check up. I don't think she's had a bronch since the whole airway reconstruction in 2018. But, my memory is a little fuzzy. Anyway, her local ENT said it has been a long time and we should just check it out. I almost canceled it. It is hard to work in "well checks" when we are already doing so many appointments. But, for some odd reason, I didn't. Anyway, can you believe that she had so many granulomas blocking her airway!?!?! Wow! I really don't know how she was handling her speaking valve at all. Her ENT showed me pictures and it was crazy. Thank God she suggested the bronch! Harlie is definitely tolerating her speaking valve so much better and I really feel like her voice is so much better! She will have a follow up bronch at the end of May. Unless I reschedule it - because I'm writing this post on May 5th while she is in the OR...

In other news:

My Mom went on Hospice in August. We moved her into a house that has a caregiver that lives there. Mom had her own bedroom. At first it was hard on her (it was hard on all of us, really). But, she finally got to know the people there and they were good to her. She had dementia. My Mom deserves her own post, but I just don't have it in me to write about her yet. She declined through the winter. By February, on my way to visit her I was always afraid she wouldn't remember who I was. The last time I visited her when she could speak, she told me that I looked just like her daughter. She also said I was pretty. It was so hard to drive to see her. It was harder to leave. She passed away on March 1, 2026. 

Even though we knew it was coming, I was so surprised at how hard it was. I thought since I know a thing or two about grief, I would handle it better. Not better - maybe I thought I would be less sad. But, it doesn't work that way. Honestly, I'm still sad. Which is probably why I don't want to write about her yet. 

On March 21, Harlie went to the All-Star Prom (prom for exceptional education students in the county). I didn't commit to her going in time to secure transportation - so I dropped her off and picked her up. Tom was out of town that weekend. No matter what, it is always hard to drop her off somewhere. Is she polite to other kids? Do other kids talk to her? Does she talk to other kids? Will she have fun? Will something embarrassing happen to her? She said she had fun.

April 9th - We announced that we were closing down operations for We Heart Harlie & Friends. This was such an incredibly difficult decision. This is also a subject that I feel deserves it's own post. This also makes me very sad and I'm just not ready to write about it, either. 

April 11 - Since she went to the All-Start Prom, I was kinda hoping she wouldn't want to go to her school prom. But, she did. Since she had just worn that other dress (that she's worn before), I ordered a bunch of dresses and hoped one would fit. Thankfully, one did. Well, it was too long, but I was able to just cut off some material at the bottom to make it work. A seamstress, I am not. 

The prom was at a hotel. Cooper and his girlfriend and friends went out to eat before. So Tom and I drove her to the hotel and dropped her off. Dropping her off at a hotel was way harder than dropping her off at the high school for the All-Star Prom. But, her teacher sent me photos and videos of her dancing and that made me feel better. Cooper drove her home and they all had fun, I'm told. I don't know what I'm going to do when Cooper graduates and Harlie won't have him around anymore. I try not to think about it, because it makes me sad and scared. But sometimes I can't help it. 

Cooper picked out his suit and purchased it himself. I don't have a picture of him and his girlfriend, but he selected this suit because it matched her dress. 

April 23 - Murphy and a friend of his drove to Pittsburgh for one night to attend the first night of the NFL draft. Those crazy kids. It is so funny to remember that just a few years ago, Murphy didn't know or care anything about football. Today he is a Steelers super fan and a football expert. Haha! Thank you to our dear friends Mike and Laura for putting them up for the night!

Murphy came back the next day (Friday) so he could attend Cooper's school play - Shakespeare's Twelfth Night. Cooper played Sebastian. He was so great, as was all of the students! It is truly amazing what these kids can do. We have already been super impressed with their ability to memorize and perform all their lines - but Shakespeare? That's on another level. Anyway, it was great - we all loved it. I went two nights. I just love getting to watch Cooper on stage. 

Cooper is in the center, to the right of the girl in the blue dress.

Cooper and his girlfriend (Riley). She was Antonio in the play. 

Mary Ann (aka Grandma) came down for the weekend so she could see his play. 

April 26 - We went to see the Richmond Flying Squirrels for Tom's birthday celebration (his birthday was on April 28th).

Our friend Dave made this happen. It is hilarious because Tom turned 53. Haha!

May 1 - We went to Banana Ball. It was crazy. It was our first time experiencing the chaos that is Banana Ball. 

It was the Firefighters vs. the Clowns. There were "characters" all over the place. 

I would say that it is more like a show with a side of some baseball-like game. It was fun and different.

What's ahead:

May 11 - Murphy's 22nd birthday. I really hope to be home from Boston before his birthday. 

May 12 - Murphy graduates from Reynolds Community College. Now I REALLY hope we are home for his graduation. We are so incredibly proud of him. He worked full-time while going to school and paid for all of his classes along the way, all on his own. 

May 15 - Murphy is moving out and moving in with a friend of his. Thankfully, he won't be too far away (20-25 minutes or so). I am unable to write about this right now as well. Yes, I am so proud of him. Yes, I am so happy for him and excited for him. Yes, I know he is ready. Yes, I know this is the way it is supposed to go. Trust me - this is not the way it will go with Harlie - so I know to be so grateful for the life experiences that are good, normal, and all that jazz. But, I am going to miss him being in our home and sharing our address more than I can say. This year has already been pretty hard as far as changes go (there have been many) and I am just going to need to feel what I feel. 

This year should be the year that Harlie graduates from high school. But, it isn't. This definitely needs it's own post. There are so many feelings that go along with this. Just know that I'm feeling pretty raw right about now. Some days I find myself so angry - at everything. Then I realize that what I'm feeling is just pain. Pain all over. Every interaction I have just causes me pain. Even when I'm happy for someone else, it just reminds of me of what we've lost. 

Anyway, that's it for now. I'll start working on the hospital posts. 

As always, thank you for reading, thank you for caring, thank you for the love!

Christy xo