I don't know how to begin a post after this long. Trust me, I've tried. I've tried so many times to write. I get started, might get a few paragraphs in, then I find myself overwhelmed. Or I just don't want to think about what I'm writing about anymore. Then I go and play some stupid game on my phone so I don't have to think at all. I even "finished" a post in the summer. But I still haven't published it. Despite all the good feedback I've received over the many years I've been blogging about our life (started 19 years ago!) I've been struggling with sharing my life lately. If you've ever commented "thank you for sharing" I thank you. It is so hard to share your inner thoughts, your feelings, your fears, etc. with close friends and family - much less to anyone on the internet who is willing to read them! It takes a certain strength, an energy, something - to share. It makes you vulnerable and you need those things to get you through that vulnerability. I guess lately, I haven't really had that something to do it. I still don't. But, I'm going to do it anyway.
I'll start with a picture of the first day of school for Harlie (12th grade) and Cooper (11th grade).
Okay, here is what I started weeks ago:
I haven't updated you in so long. I have tried to write - several times. But, I feel like my post gets so overwhelming. I do not know how to update you on our life in a short, concise way.
So, how is Harlie doing?
Overall, she's doing well. I feel like this school year got off with a rough start. Harlie was offered to attend a program where she would go to a different high school for the first half of every other day and learn about job stuff.
Wait, I have to back up first. For years Harlie has been telling anyone who would listen that she wanted to take a science class. So, last year in her IEP meeting, we discussed this and everyone agreed that science was clearly important to Harlie. So, they thought Oceanography would be a good start. So, that class was added to her schedule.
Unfortunately, Oceanography and this work program were scheduled on the same day. Schedules came out the week before school started, I think. So, on Harlie's second day of school, she was put on a bus all by herself and sent to a different high school where she didn't know anyone, had this work program, had lunch, then she rode the bus alone, back to her school. After arriving, she went to Oceanography for the last 15 minutes or so of the class.
Also, she didn't have PE class. Instead, she had a photography class. To be honest, her last IEP meeting was sometime last year and I cannot remember the details. Did I decide she would take photography instead of PE? Or did someone else? Was there a mistake? Miscommunication? I have no idea.
Regardless, Harlie wanted science and PE and she essentially got neither. She was miserable. Like so upset and it broke my heart.
Normally, I would ask her to give this work program more than just one day's chance. But, that wasn't fair. She did not ask for the work program, she asked for science. And honestly, I really don't see how she will ever work, physically speaking. Her working is not an expectation nor is it a goal (at least for now) as far as I'm concerned.
So, I pulled her out of the work program and added PE. Because of scheduling conflicts, we had to take her out of Photography I and put her in Photography II instead. I hate to have her skip anything (because she needs more time versus less) but I was told the teacher said it would be fine and really, I had no choice.
Now she gets her full Oceanography class. I know I made the right decision because after school on the first day she took the full class, she showed me her Oceanography notebook where she had taken notes of all the rules of the class and then listed bodies of water. Just writing all that was so much work for her!
Then, she got out her tablet and started googling all of the bodies of water on the map so she could see and learn where they all are. Then she told me they had a quiz the following week. I honestly think that's the first time she's ever told me she had a quiz or a test and it made me tear up. Talk about appreciating the small stuff. She wants to learn so badly. It kills me how hard she has to work for everything.
I just hope that her Oceanography teacher can see and appreciate that about her. I know you're probably thinking, how could he/she not? But, sadly, not everyone sees value in a person with disabilities. Sometimes I feel like some people don't see Harlie at all. Well, I think it is more like they don't want to look at her. Like they know she's there, but they pretend they don't see her, so they don't have to acknowledge her. I've been out with her (like to the aquarium in NC this summer) and I saw both adults and children walk in front of her, cut her off in the hallway, get in front of her at a tank, etc., like she wasn't even there. Not one person said "excuse me" or "I'm sorry" they just kept on trucking like we were invisible. It sounds ugly, but it is the truth. It was a terrible experience. The kids, I sorta get. But, the parents? No excuse.
We have her schedule straight now, which is good. But, the school situation is still a little frustrating. This is Harlie's 4th year at this school and she has had a different case manager each year. Other individuals have changed in the department as well, and these inconsistencies make navigating school extra difficult for me. For most students, they are learning to handle so much communication on their own. Cooper handles his own stuff and tells me what I need to know. I don't have to communicate with his teachers at all. However, it is not like that with Harlie. I have to handle so much stuff for her. I wish her school could keep a case manager longer than one year. It makes me feel like the Exceptional Education department isn't valued at her school.
An exceptional education student can stay in school until they are 22 years old. I think it is typical for a student to walk at graduation with their class. However, I don't feel like Harlie really has a class per se. We put her in KG at age four, on purpose, so she would take it twice, which she did. Then we had her repeat 2nd grade because she had been out so much for medical reasons. For third grade, she was moved to a different elementary school. Then her medical stuff got so bad that we took her out of school completely and she went on homebound (she didn't attend one day of 4th grade). Then Covid happened and I couldn't send her to school because their Covid rules were to protect all the other students FROM Harlie's trach, which put her in harm's way, so she went back on homebound. Anyway, while the last four years have probably been the most consistent she's ever attended school, she doesn't really have any "friends" in the traditional sense.
Right now, Harlie thinks she is going to graduate high school and then go to college, like so many other students. But, that isn't going to happen. So, I think it would be detrimental to her to have her walk/graduate, just to have her return to school the following fall. Selfishly, I know it would be detrimental to me (Tom, too). Knowing what I know about Harlie and her hopes and dreams, I want to put off the reality of what her future will be as long as I can. It was my understanding that we could choose when she walks. I only speak for myself here - I'm sure this process of walking with your class and returning to school as a "super senior" works for many and that is great. I am not trashing that process at all. I'm just saying that in our situation, that path sounds more painful to me. When she graduates, I want her to be done with that chapter. Just like Murphy was and just like Cooper will be. Although, this also means that Cooper will graduate before her. I know it was hard for her when Cooper got his driver's license. She knows she is older and she said that it is her turn to learn how to drive. But, that just isn't possible. I haven't been able to share yet - but she had that psychological evaluation done back in May (for her guardianship process). As a result of the evaluation, she was officially diagnosed as having an intellectual disability. I'm not going to get into that right now. I will definitely stop writing and go play some dumb game on my phone if I attempt that. Haha! So, based on that evaluation and diagnosis - she cannot drive.
We have talked to her about this graduation thing and I don't really know how much she truly understands. Unfortunately, she was in the hospital when Murphy graduated - so I don't even know if she knows what that even looks like. So, maybe we will change our minds, but for now, we are waiting for her to walk.
Her next surgery is October 14th - back in Boston.
The above is what I wrote some time ago. I guess I didn't want to think about her next surgery in Boston. Haha!
Since then, I met Harlie's Oceanography teacher during parent/teacher conferences. He told me that Harlie "works from bell to bell". That is awesome. I love it. She is such a hard worker. So, I think he sees her and that makes me feel better. Here are a few more pics of her notes. Maybe it is weird to share them, but I think they are so darn cute!
Also, there was a new development with her surgery in Boston. Back in the summer, Harlie's dentist took an x-ray to look at her wisdom teeth.
The area circled in pink is the prosthetic TMJ on her right side. The wisdom tooth on her lower left side has a red dot on it. As you can see, the tooth has a hooked shape to it. Seems gnarly to me. The white thing with the blue dot on it is the temporary spacer to hold the place for the upcoming prosthetic TMJ. As you can see, the hooked wisdom tooth is super close to where the TMJ needs to go.
Ugh.
He said that the lower wisdom tooth on her left side looked bad. When he replaces her TMJ, he will do that from the outside of her face. To remove the wisdom tooth, he has to go inside her mouth. The tooth is so close to her joint that the risk of bacteria traveling from the tooth area to the joint is way too great. Given her sensitivity to infection (she has been on an antibiotic for over four straight years for joint infections and this will be her second TMJ replacement due to infection) that the best thing to do is to remove the wisdom tooth several months BEFORE he replaces her left TMJ. He said even if we wait a year or more to remove the wisdom tooth, the bacteria could still penetrate the prosthetic TMJ.
My first thought was that some people go their whole lives without having to have their wisdom teeth removed. I mean, Murphy still has his and he is 21. I am not looking for more surgeries here. Plus, we had already bought our plane tickets, made logistical arrangements and mentally prepared for this surgery. Also, and probably my biggest concern, is that the last time we went through this....ugh this is so hard to explain. Let me do it this way:
April 2023: her right TMJ was removed and he put a temporary spacer in to hold the place.
October 2023: he put in the new right TMJ. But, during the time in between surgeries, the TMJ on the left side became dislocated. He had to open up the left side to fix it. This lead to the left TMJ becoming infected. Which has lead to the left side needing to be replaced.
Another thing to note - it takes some time to know if there is an infection. She came off her antibiotic in December of 2023 and in January 2024 she started showing signs of an infection on the left side. So, she had to go back on the antibiotic. Thankfully, she has been tolerating this antibiotic (Doxycycline). We just kept her on Doxy until the infection broke through and reappeared in December 2024. Once the infection breaks through while on the Doxy, we have to remove the TMJ.
So, this wisdom tooth creates MORE time in between the removal of the left TMJ and the replacement of it. So, will the right side become dislocated? And if so, will he then have to open up the right side? And if so, will the right side become infected?!? Do you see what I mean? Adding time in between the surgeries makes me super nervous.
So, I replied with "Can we just forget we ever had this conversation?" I asked if it was possible for her to just keep them forever - I mean, not everyone gets them removed. He told me it looked like the tooth was not in great shape - which meant it was risky to leave it. I took her to her dentist to so he could take a closer look. He said that it appears that her wisdom tooth has been fractured (during some past surgery). So, her surgeon said it must come out. At first, I just didn't want to think about changing our logistics. So, I asked her surgeon if he could remove the tooth on our already scheduled OR date and he said of course.
But, as I thought about it over the next week or so - the thought of doing what is likely some version of outpatient surgery - in Boston - sounded really terrible. I mean, who the hell wants to have a bear of a wisdom tooth removed and then go back to a hotel or worse, get on a plane - or in a car for a 12+ hour car trip home? So much of what happens to Harlie is out of my control - but this I just couldn't do to her. Or to us, frankly. It is very hard to be a caregiver post-op when you're traveling. Plus, it didn't take me long to start fearing - what if something happens and we are in the air - or hundreds of miles away on some highway? I mean, to everyone else - this is just a wisdom tooth removal. But, just when you think something will be simple - that's when things go wrong.
So, I reached out to a local oral maxillofacial surgeon at VCU that we know and love. He has helped us out in the past when Harlie was post-op from Boston. He said he could remove it for us here, locally. So, that's what I decided to do. It makes so much more sense to stay here for this. He got us in his clinic within a week. He said that it isn't going to be easy, but he will get it done. Haha! Her mouth opening is so small, I don't know how they have any room to do anything. Plus, this isn't a straight tooth, so that's got to make it more difficult. She also has a wisdom tooth on her upper left side. We have to decide if we want him to remove that one as well. I just don't know that I want to do both at the same time. I know that is normal for most people - but well, Harlie isn't like most people. So, I think I'm going to leave it be for now. I don't want to add more risk if not absolutely necessary. At this point, her wisdom tooth removal is scheduled for November 25th at VCU and her TMJ replacement surgery is May 5th in Boston.
Back to what I was saying earlier about the time in between surgeries - her left TMJ was removed May 13, 2025. The new TMJ will be placed May 5, 2026! A whole year! I know there is absolutely nothing I can do about it. But, I have to tell you, it takes so much work on my part to try and stop worrying about all that could go wrong. So, that's what I'll be doing for next eight to ten months.
Who am I kidding? Honestly, I think the last 19 years have broken me. I'm now a catastrophic thinker. So, I don't think I'll be worrying for ONLY the next eight to ten months. I'm working on it. But, I think it goes with the territory if you have a medically fragile child that has experienced a lot of close calls (medical trauma). Not only have we experienced them - my vigilance and hyper awareness is what could save her life in the future, too. So, I can't just stop worrying. This has become more of an issue lately and has started to impact other areas of my life. Maybe it has for longer than I've been willing to admit to myself. I might have the courage to share more about that in the future, but not today.
Since we rescheduled her TMJ surgery and it is some distance away - I reached back out about trying to get the oculoplastic surgeon scheduled on the same day. No can do. Ugh. Can you believe that? This is so frustrating. Every time I look at another option, it means a whole new ophthalmology consult. She's had three in the past year! Trying to get her eye situation better has really been a ton of work and it is hard to think that I have to keep working on it!
Despite being as healthy as Harlie can be, she has the following upcoming appointments:
Electrophysiologist (pacemaker check): November 6
Hepatologist (liver doctor): November 19
Wisdom tooth extraction: November 25
Ophthalmologist: January 2
Dentist: January 5
G-Tube follow up: January 6
ENT, Bronchoscopy: January 9
Damn, that first week of January is going to be rough. Honestly, I might have to reschedule one of those.
Well, that's it for now. I'm spent. As always thank you for reading and for caring.
Much love,
Christy xo
