Left TMJ Surgery in Boston

Hi! Well, Harlie had her TMJ removal surgery today (Tuesday). To be honest, I'm struggling to get this post started. I'm just feeling so tired of it all. 

Preop Day (Monday)

We flew up on the first flight on Monday. We had to leave the house at 4am. I, of course, woke up at 2:15am thinking of all the stuff I had to do that I didn't want to do. Like go to the airport and fly to Boston. Anyway, the flight was fine. 

We arrived in Boston and took an Uber to our hotel (which isn't really a hotel). It is awesome because they are apartments that are rented for patients of Boston Children's Hospital. It is kinda like a Ronald McDonald house (which they do not have here). They opened after our last stay here, so it is new to us. It is way more affordable than a hotel or AirBnB. So, we went there first to drop off our luggage. Then we ubered to a breakfast place close to our first appointment. After many hurdles, her appointment with the oculoplastic surgeon was approved and coordinated with her other preop appointments. That was a logisitical nightmare. But, luckily, everyone wanted to help us make it work and they got it done. Whew! I'm so thankful for that! Anyway, we had to see this doctor at their Weymouth location (about a 40 minute drive) because that's where she was that day. 

We added this appointment because she saw her ophthalmologist back in November and she felt that her corneal scarring was getting worse. Her scarring probably happened back in 2018 when she was in a medically induced coma for 20+ days. She cannot fully close her left eye, so dust can get in there and while she was out - they were trying to tape her eyes shut. So, if there was something in her eye, it couldn't even come out because of the tape. Anyway, it also is probably dry most of the time, since even blinking doesn't shut her eye all the way. So, her doc just thought maybe it is time to see a surgeon to see if there was anything they could do surgically to help her close her eye more. It seems like so many oculoplastic surgeons work at surgical centers. They aren't going to put Harlie under anesthesia at a surgical center. So, I just thought that since we have to go to Boston twice anyway (phase 1 in May, phase 2 in October) if we had a consultation in May, and they determined that they could help her - maybe we could coordinate eye surgery with phase 2 in October. So, that is why this consultation had to happen or the whole possibility would be lost. 

As far as how that appointment went, the doctor took a bunch of pictures and did a bunch of eye tests and she said she wants to do some research and talk to her colleagues before giving us an answer. I told her that if she felt like they could not improve her situation, that is fine. I am not pushing for this thing unless it truly could help her. So, we'll see what she says.

After that appointment, we ubered back to Boston Children's hospital, main location. At this point it was 1:10pm and we had about 7 minutes to eat lunch. So we grabbed a salad in the hospital cafeteria, ate it really fast and then went up for her preop appointments. 

We covered her history, meds, etc. and they sent in anesthesia. When she came in she said she had some bad news. She said that legal had an issue since she is 18. I guess they concluded that she is not a typical 18 year old so they had an issue with us helping her? I don't really undertsand it. I mean I've gone with Murphy to appointments when he was over 18 and no one said a thing. I took Harlie to her pacemaker appointment two weeks ago and the lady checking us in had to ask someone else if they could still see her. I mean, just ask her if she wants me in there with her. 

Anyway, they basically said that surgery might have to be cancelled. I mean, she has an active infection in her jaw - so this possibility was terrifying to us. Not to mention the cost and time we had invested. Anyway, after they left to go and get social work and talk amongst the legal team - it occurred to me that we did her power of attorney and medical directive a few months ago at the firm where I work part-time. I completely forgot about that! Anyway, I called my sister and asked her to look in my computer at work to see if I scanned in the signed copies. Which, I did not. Darn it. So, then we called my neighbor to see if she was working from home, which she was, thank God. So, she dropped everything and went to our house and she found the documents in our office. Then she scanned them to us. Hallelujah! Thank you, Lindsay! Tom emailed them to the nurse and we waited. 

It is during situations like this where my brain goes crazy (PTSD?) and it is awful. Not to mention that I feel like I am being lit on fire when it appears that some stranger is standing in the way of Harlie getting the medical care she needs. OMG. So, I started to think of every horrible thing that could happen. Like, for example, YEARS ago while we were in the hospital here, there was a case happening where Boston Children's Hospital took parental rights away from the parents of a patient. They brought her here from out of state for a chronic issue because they couldn't figure out what was happening. I guess they feared that the parents were part of the problem. I have no idea how that ended. Anyway, that entered my mind, as if that was a possiblity! I was afraid that they wouldn't honor the document. I don't even know if that is possible. But, I was truly terrified they would question it and say it didn't matter. 

We are working on her guardianship, but trust me when I say this has not been easy. In fact, we just got her psychological evaluation report that very day! I think that is the last piece of information we need to file it legally. 

Anyway, I was trying to stay calm and tell myself that it will be okay if they cancel it. I said to myself, I didn't want to do this to her anyway, so we will just leave and go home and hope that her infection doesn't hurt her before we can get this guardianship and come back. Or maybe even go somewhere else. I'm telling you - I looked totally calm, but inside I was spinning out of control!

Then the social worker came in and said legal said her medical directive was what they needed and all is a go. I literally had to hold back the tears. I was so relieved.  The documents are now saved in my phone, which is where they should have been. Ugh. My brain just doesn't work like it used to. I'm just getting too old and tired for this kind of stress. We are 18+ years into fighting for her life and I am running on empty. 

After that she had to give some blood for labs, the anesthesiologist came back and we did our thing (more history, questions, meds, etc.) and then we were DONE. 

We left the hospital close to 5pm, I think. Been up since 2:15am. So, we walked the mile or so towards our apartment and stopped at REI (Harlie calls it the camping store) to let her look around. Then Tom and I got a drink and we sat outside for some fresh air and relaxation. 

Tom ordered me the Murphy's Law, which was an Irish Whiskey with cucumber and mint. Since Murphy turned 21 on the 11th (the day before) that seemed like a good choice. 🙂

We went to Target (which is right across the street from our apartment) and got some essentials (coffee), went and got dinner from a greek place and then ate in the apartment. It is a cute, tiny one bedroom apartment. Perfectly fine for our needs and priced great at $75 per night. 

We were all so exhausted and we had to get up at 4:30am! We had to have her at the hospital at 6am and we had to walk there.

Surgery Day (Tuesday)

They took us back to preop quickly. They had told us that they wanted to start an IV in preop. Harlie hates that. So, we talked about it beforehand so she wouldn't be blindsided. She likes to be informed in advance of all things. Haha! I told her I would only let them try once or twice. If they couldn't get it in one or two sticks - they would have to stop, so she agreed to that. They didn't get it in one stick and the nurse said she wouldn't even try a second time. Harlie was glad about that. 

I am so used to answering all the questions for Harlie. But I made an effort to ask her if she wanted to answer or if she wanted me to answer. She wanted me to answer all the medical stuff. She answered all the personal stuff.

All the docs came in to ask all their questions and ask us if we had any questions. We never have any questions. It always cracks me up when the anesthesiologist asks me if I have any questions. Like what would I possibly ask her? You know what you're doing? Great. Go do it well. 

They took her back around 7:30am. We went and got some breakfast and then headed to the waiting room to wait. This is what I posted on Facebook:

Tom made this little image of me and added it in the comments.

It so perfectly depicts how I'm feeling right now! Haha! Love it. I feel seen! Haha!

Anyway, while we waited, Tom put the movie Nonnas on his tablet for us to watch. It has Vince Vaughn in it, it is on Netflix. The movie starts with a funeral. 😑 

Folks, I'm hanging on by a thread over here. So, the slightest thing that could be interpreted as sad, and there was no chance I could hold the tears back. I basically sat there and cried for the first 15 minutes. In fact, I told Tom to just turn it off. But, he said, "I think it gets better." Haha! He went and got me some tissues, actually it was a bunch of toilet paper because he said he couldn't find any tissues. What the actual heck? A children's hospital (affliated with Harvard medical, which has to have plenty of money) waiting room with not one freaking box of cheap ass tissues? Unbelievable. So, I sat there with my wad of toilet paper crying over some stupid movie that wasn't even sad!! I'm telling you, my life is way harder than I make it look. 

Luckily, I was done crying by the time her surgeon came to talk to us. He said there were no surprises and all went as planned. He said the infection was there, but wasn't horrible. Either way, we had no choice but to do this - we were never going to beat that infection. He asked us for permission to test Harlie's blood. One of the plastic surgery fellows poked himself with a needle during her surgery. I asked him if they made fun of him and he said yes. Haha.

They admitted her to the CICU and when they got her all settled, we were able to go see her. One example of why hospitalizations are so exhausting is the repetition of information - we asked her surgeon what after care she should have. He said ice is the best thing we can do to help reduce the swelling. I asked him if he put that in the orders so the nurses in the CICU would know to do it, since the CICU doesn't normally get plastic surgery patients. He said yes, they are in there. So, we get to her room and there's no ice. So, I ask the nurse about the ice and she said there were no notes about ice. I don't know why that happens - but it does. You always have to be on top of everything. You can't assume anyone knows anything. It really gets exhausting. Anyway, she got her ice and a sleeve thing. She slept pretty good and her nurse said she only had her so she would be right with her - so we should go eat lunch. 

We left the hospital and walked to a restaurant a few blocks away. It was a beautiful day.  Harlie woke up when we got back. Oh, forgot to mention that her surgeon also re-pierced her left ear while he was in there. I don't know if you'll remember that when we went to see Taylor Swift a couple of years ago, Harlie's left ear lobe split. So weird. During her surgery to replace the right TMJ back in 2023, he repaired that ear lobe. So, since he was in there, Harlie wanted him to pierce it again. 

We stayed in her room until her night nurse came on. She said she only had Harlie for the night and would be right with her. Harlie was pretty tired and slept most of the time. So, we left and headed to the hotel. After putting our stuff down, we went up to the top floor of the building to check out the view. There's a little patio up there for the residents, which is pretty cool. That's Fenway behind us. 

Then we walked to a restaurant just a few doors down for dinner. Tom's mom got us an e-card for dinner there, so that was really nice. Thanks, Mary Ann!

Post-Op Day 1

Harlie's nurse said she slept all night, which is good. When we got to her room, we got her all cleaned up - I brushed her hair and braided it, changed her trach ties, got her ear all cleaned up (her incision had drained all over her freshly pierced ear) put her in fresh pjs and changed her bedding. 

She was a little upset and frustrated at her life and cried a little. Ugh, she breaks my heart. She told me that she gave her phone number to a girl in her class. I was very surprised. She checked her phone to see if her friend had messaged her and she had not. I have no idea of what her friend is capable of doing or if she even knows that Harlie had surgery. I can't imagine having a surgery like this and not hearing from my friends. It just breaks my heart that Harlie doesn't have that kind of friendship. She must feel so lonely sometimes. 

Her nurse said that if she could get a CT scan today, they would discharge her if we were ready for that. We felt like she was doing really well. Then her nurse said that CT called and said they were ready for her. Wow. So, Tom looked at flights and the next flight out is for 9pm tonight. They rounded on her right after she returned from the CT scan and told Tom to book our flights. I loved the attending doc. They ordered her meds and gave me everything I would need for the trip home. This is definitely the shortest post-op stay she's ever had. We loaded up and left. For the first time ever (been coming here since 2012, I think) we used the free shuttle from the hospital to our apartment/room. I just didn't want her to have to sit in her chair and be bounced around. Seemed like that would be painful.  

We are now in our apartment/room and Harlie is napping and we are pretty much packed and ready to go. 

Hopefully, all will go well with the airport and flight and we'll be sleeping in our beds by midnight. Thank you for reading and commenting and loving us. 

Much love,

Christy xo

Medical Updates

Hi! It has been a while since I've given a medical update. So, here goes...

Temporomandibular Joint (TMJ) Update

Here's a recap of her TMJ saga:

April 2021 - She had her first custom prosthetic TMJs placed on both the left and the right. This was one of her most brutal surgeries/recoveries. This is the hospitalization when her tablet was stolen from her bed while she slept. And this is the one when she couldn't stop bleeding for weeks. It was a horrible time. Anyway...

May 2021 - a growth appeared at her incision sites on both sides. I took her to several doctors to try and find out what it was.  

August 2021 - I finally got her into the OR with her ENT in DC. He said it was an abscess/infection. They gave her a PICC line and a two-week course of IV antibiotics.

September 2021 - the abscess returned, so infectious disease put her on Doxycycline. Over the next year, we attempted to take her off Doxy several times, each time the infection returned, so she went back on Doxy. 

November 2022 - the infection returned on the right side only, despite being on Doxy. After consultation with several of her doctors, the decision was made to return to Boston to remove the TMJ.

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a medicated temporary spacer in it's place. While she recovered from this surgery, they made a new custom prosthetic TMJ for her. 

October 2023 - the new custom right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated. This was very unfortunate, because it meant that he had to go into the left side, which opens up the possibility of post operative infections.

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

January 2024 - The infection reappeared on the left side (not the right). The left side is the one that has the original TMJ and was dislocated. When I was ready, I contacted our infectious disease doc and she put her back on Doxy. 

December 2024 - On Christmas morning, I discovered that the infection reappeared - even though she has been on Doxy consistently since January 2024. 

January 2025 - I contacted her infectious disease doctor. She put her on Linezolid for 12 days and after that course, we went back on Doxy. The infection looks unchanged since December. So, I had to reach out to her surgeon at Boston Children's Hospital. I explained to both doctors that we are scheduled to go to Hawaii for her Make-A-Wish trip in March. There is no way we have time for her to have surgery before then. So, can it wait till after the trip? They both felt that it would be okay to wait since she will remain on Doxy. 

Trying to find a "convenient" time for this surgery was a challenge. Tom will miss a week of work in March. Then he starts a big job as soon as he gets back. This meant he didn't want to be away in April. We Heart Harlie & Friends has a major fundraiser April 26, so I didn't want to be away during that. She also has summer camp in June. So, she needs to have the surgery before and have enough time to recover from that before camp. I hate for her to miss school - especially if it is the end of the year. But, we really had no choice. 

May 13, 2025 - She is scheduled to have her original custom prosthetic TMJ removed and he will place a medicated temporary spacer. They will then make a new TMJ for her and we will have to return to Boston (hopefully before it gets cold up there) to have the new one put in. We will have to talk about what he can do to try and prevent the right side from becoming dislocated during this process. I fear that we will be doing this forever if we can't prevent a new infection from brewing on either side. 

I have to admit that I am NOT looking forward to returning to Boston again. I just don't know how many more trips and surgeries we can handle. This is not something I would ever choose for her at this point. It is out of my control. We cannot leave an infection in her jaw. But, I am so DONE. I say that, but I know I can't be done. I have to make her go again - and then again in the summer/fall. 

Harlie's Left Eye

One of Harlie's original birth defects was that her left eyelid didn't form correctly. When she was born, she actually couldn't close her left eye on her own. After a few months, she was able to gain some closure. But, it has never fully closed. This leaves her eye vulnerable to dust and particles, etc. When she was in the hospital all those months in 2017 and 2018 (two medical induced comas - one lasting 7 days the other lasting 22 days) they had a hard time figuring out a way to protect that left eye. They tried taping her eyes shut, putting masks over her eyes, sometimes both at the same time. But, her corneas still ended up with scarring. She sees an ophthalmologist yearly. 

Well, this past fall her ophthalmologist said that her scarring has gotten worse and that she was surprised she could see as well as she could out of that left eye. She explained to Harlie that she must put eye gel in her eye before she falls asleep every single night. Surprisingly, she listened to her doctor and has been really good about it - even though she hates it. However, her doctor said she thinks it is time to talk to a surgeon to see if something can be done to her eyelid to help with closure, which would hopefully stop/prevent more damage to her cornea. 

So, when we scheduled her TMJ surgery in Boston, it occurred to me that it might be good to get a consultation from a surgeon there, who likely sees more kids with these kinds of defects. So, I asked her plastic surgeon about it. They told me that she would need to see an oculoplastic surgeon. So, I called that office and asked if we could schedule a consultation. Not surprisingly, this has proven to be a difficult ask. 

I was thinking they could come and take a look at her while we are there for pre-op/surgery the week of May 12th. Then, IF they felt that they could help her situation, they could schedule surgery at the same time she is getting her "final" TMJ placed in the summer/fall of 2025. 

Of course they asked that her records and notes from her eye doc here be sent there for review. The office in Boston told me that they are scheduling appointments for November 2025 at this point. But, he is going to talk to the team since we are traveling and ultimately, I'm trying to minimize the number of surgeries she has to have. After a few days, I received another phone call and he told me that there are three oculoplastic surgeons. But, only one of them can (?) operate on patients who are 18 (the other two are pediatric only) and that it looks like she (or all of them?) is away at a conference that week. He asked if we could come another time. I told him that it is extremely difficult and costly for us to go there and if I can't combine visits, I just can't make it work. I'm sorry, I just can't. That would be a THIRD trip to Boston in one year (when I want to go zero times) and I am only human and I'm sorry that is just TOO much! 

I cannot travel with Harlie alone - I need Tom. And Tom is missing work in March, then again in May, then again in June (to take her to camp) then again to take/pick up Cooper from camp in Maine (he was selected to be a counselor in training at camp this summer!), then again for her 2nd stage surgery. Also, keep in mind that I don't even know that they can help her and I don't even know if insurance would approve it, etc. All of that is really an impossible schedule. 

He said he understood and he actually sounded pretty sympathetic. So, he said he was going to talk to the team and get back to me. Honestly, I don't know what he can do. Sounds like a pipe dream that isn't going to happen. Well, you can't say I didn't try. 

Guardianship

So, now that Harlie is 18 and she isn't a typical 18 year old, I have to think about a guardianship. This has been difficult for me because most of the time when you hear about a guardianship, it refers to an "incapacitated" adult. Even though Harlie is delayed and has a heck of a complicated medical life, she is not incapacitated. However, according to her recent school tests, evaluations and IEP, she is very delayed (she's basically on a 2nd grade level and she is in the 11th grade). I'm thinking that an adult who is operating on a 2nd grade level could benefit from some protection financially and she definitely needs help navigating her medical complexities and decisions. 

But, as usual, nothing is simple. I've now been working on this for months and I feel like I've made no progress. Medically, we don't have a diagnosis that explains that she is delayed - or why she is delayed. She has no diagnosis of a learning disability or anything neurological. All of her IEP and school stuff talks about what a hard worker she is, how much she wants to learn, etc. So, we need to get a psychological evaluation to show her cognitive ability/IQ and adaptive skills. I'll spare you the agonizing steps I've taken to come to the learning that most facilities who do this testing in our area are not approved by Medicaid (which is what Harlie has because of her medical qualifications). So, I asked if I could just pay for it privately. The answer is no - because legally, they aren't allowed to bill patients who have Medicaid. So, we can't get what we need? WTH? 

So, that's where we stand. My attorney said that we can start the process with what we have and see what happens.  So, I guess that's what we'll do.  There are times when my life seems unreal and ridiculously overwhelming. I mean, one of these issues would be a lot to deal with. And these are just the ones I'm talking about in this post! 

Cardiology

Harlie had her annual cardiology appointment on Tuesday, February 11. She had an echocardiogram (an ultrasound of her heart). I think that took over an hour, but it felt like forever. 

It was actually interesting because the person doing it was training so I got to hear what they were saying about the echo while it was happening. I gained a new respect for the skill they have to have to get good pictures and videos of a heart - especially when there are challenges like tons of scar tissue and an unusual heart anatomy. However, even though I knew that, after a while I started to get a little concerned that maybe some issue has developed since her last echo and that was causing it to be even more difficult. 

It made me remember when I was pregnant with Harlie and we were sent to Children's National for a fetal echo. We did not have any idea that her heart was wacky at the time and the echo took forever.  In fact, the room is dark when they do it and there is always a hum in a hospital and I actually fell asleep for a few minutes during the exam! Then the tech stood up and said, "huh, the baby isn't letting me see all four chambers of the heart, I'm going to go get the doctor" (or something like that) and then the doctor came in and did the echo for a while then he asked us to go wait in a conference room where there was a box of tissues on the table. 😑 Just in case you don't know, Harlie's heart didn't have four chambers.

Anyway, back to present day, finally they were done her echo and we returned to the regular exam room. When her cardiologist came in a few minutes later, he said, "Her echo looks great." Haha! Ah, the emotional roller coasters I ride when no one else knows I'm riding them. 

Then he said something about since she's 18 now, it is probably a good idea to start thinking about getting a heart cath done to take a look at things. Honestly I don't know how I could work in a heart cath in our schedule right now. It is hard to remember exactly what is said in some of her appointments. Especially after I ride a roller coaster in my brain. But, he said something about her liver and monitoring that and I swear I was like, "Oh yea, I forgot about that issue!" For a little while after the appointment, I reflected on how I could forget such a thing. I mean, it was something that REALLY worried me last year, for quite a while. We've had numerous appointments regarding that issue in the past year. But, honestly, it is survival. I have to compartmentalize and there are only so many tabs I can have open in my brain. Sometimes I just have to say, "that isn't today's problem." 

Anyway, since I had him in front of me, I asked him about my guardianship challenge. I wanted to know what the worst case scenario was if I cannot get it, medically speaking. He said medically, he doesn't think I'm going to have a problem not having a guardianship for her. He said he will write up something for me that explains that there are several factors (just within the cardiology aspect) that contribute to her developmental delay. Like prolonged oxygen deprivation (she has had low oxygen saturations her entire life), cardiac arrests, surgeries, etc. all contribute to brain development issues. 

While it would be kind of nice to get some answers (not that I ever really expect any) as to why she is the way she is or exactly where is she IQ wise or cognitively, he thinks I could put this on the back burner as we have more pressing issues (obviously). I do love when a doctor can stand back and look at the whole picture of Harlie, versus just zeroing in on their specialty. I really love this cardiologist and trust him and I'm grateful to have him in our corner.

So, we'll just see what happens. I've reached out to another contact about the psych eval and maybe one day I'll get it worked out. For now, this is where I'll end this post. I wonder if y'all get as exhausted reading some of my posts as I get writing them. I swear, sometimes I still can't believe this is our life and that we've been living it for over 18 years. 

Thank you for reading and for your continued support! We couldn't survive without it!

Much love,

Christy xo

Here's a pic of our snowy view from the 4th floor of the Children's Pavilion downtown.

Make-A-Wish and Family Photos

The time has come for Harlie's Make-A-Wish trip. Well, the planning part anyway. 

I really put off this whole MAW thing for years (obviously). Her social worker at CNMC had mentioned that she was going to put a referral in for Harlie many years ago (right after Harlie's near death experience in March of 2018). I didn't really want to think about it back then, so I never followed up. It also took Harlie about a year to fully recover from that hospitalization, so I couldn't think about MAW at that time. 

Anyway, it was the summer before she turned 17 that I saw a commercial that said that it is only for kids under 18. Realizing that she was going to lose her chance, I knew I couldn't put it off any longer. Just a few days after she turned 17 (in 2023), I wrote to one of her cardiologists about it. The approval came THAT AFTERNOON! Isn't that crazy? 

Then we had to do a zoom meeting with a MAW volunteer and let Harlie meet her and answer some questions. We had to figure out what Harlie's wish would be. So, we asked her, "Harlie, if you could have anything you wanted, what would it be?" She replied, "I'd like to make bracelets." Um, no. Think bigger. "I'd like to see Wild Kratts Live." Bigger! (We took her to see Wild Kratts Live in May 2024. The tickets were a Christmas present that year.)

So, we asked her if she could go anywhere, where would she like to go? She said "Japan!" Too big. Haha! She says she likes the architecture and flowers/trees in Japan - and the ninjas. Haha! Then she said, "I'd like to go on a safari, like you did." Yes, when I worked at Operation Smile many moons ago, I went to Kenya on a work trip and then went on some safaris with some work friends. That was such an amazing experience and man, do I wish we could give that to Harlie. But, still, too big. MAW doesn't do international trips anymore. So, after some thinking and researching, she decided she would like to go to Hawaii. 

There's been quite a few hoops to jump through. They had a hard time with us not wanting to take a nurse with us. We just aren't there anymore with nursing. We would have to start all over with a nursing agency and we don't have any interest in that. So, that took some effort. They eventually said we don't have to take one. Murphy is over 18, so that took some effort, too. Regardless, all was approved. 

They sent us a worksheet to help us figure out which island we wanted to go to and what we wanted to do while there. Based on what she wanted to see and do, we selected O'ahu (also it is the island with the hospital, haha). Then they gave us a window of travel and we had to pick good/bad times to travel. I selected Murphy's spring break first, since I knew it would be hard/detrimental for him to miss a whole week of his college courses. Then we just had to wait for our time to come. 

Now, it is almost Christmas 2024 and we just got our dates for travel - March 8-15th, Murphy's spring break. We got our first choice!

I'm already stressing about it. I know that this is what they do, and they will do an amazing job. But, at the end of the day, we have to travel, and traveling is not easy for me. There will be packing and medical stuff, oxygen and her chair and long flights. What if she gets sick right before? Or while we are there?! We are going to have to ship some of her medical stuff, and we are going to have to rent some stuff while there. We can't take her power chair on flights, so we'll have to rent a chair for her there. 

Also, I know MAW is an amazing organization and I am grateful that it exists. However, no one wants to qualify. Well, I guess I can't speak for other parents. So, we didn't want to qualify. There's a whole emotional thing that goes with the reality that your child is getting a wish granted. I would give anything for her to be a healthy 18 year old who is off to college or work or wherever she would have wanted to go. I'm guessing she would've wanted to go off to college because she loves learning and she loves her independence. And the girl has goals - a doctor for babies and a veterinarian! Man, I can't let myself think like that... Instead we are working on a legal guardianship for her and a MAW trip. 

So, this isn't going to be easy for me. Just thinking about it brings me to tears. There are just so many feelings. Sometimes there's a fight,  or a tug of war, rather, between the grief in me and the gratitude. Either way I come out crying. Unfortunately, in life, the good doesn't cancel out the bad. All the MAW trips in the world wouldn't change what is difficult or impossible to manage. And they wouldn't give us back what we've lost. I do try so hard to be grateful - but I'm learning that gratitude isn't the Tylenol for grief. I'm going to feel sad about what we've lost no matter what. 

But, at the end of the day, I want Harlie to see things and experience things and this is something we could NEVER give her on our own. I also want us, and her brothers to have as many great memories with her as possible. So, I'm really hoping this all comes together so those things can happen. 

Since I haven't posted pictures in a while, here are some photos our dear friend Paige took back in November. Paige has been photographing my family since our engagement photos in 2002. 

Here is Paige. 🙂

I took some pics before Paige arrived.

Here are more of the ones Paige took.

Well, that's it for this post. Hopefully, I'll have time soon to write more. You know I have lots to say, haha! Thank you for reading!

Much love,

Christy xo