January 2024 Update

Hi. I've started this post several times. I get overwhelmed and put it down. I mean, if I get overwhelmed, how the heck are you going to feel when I try to update you?

Here's the short version - I'm struggling. I don't know why this is so hard for me to share. I mean, it shouldn't be surprising and I would never think badly if/when someone in my shoes is dealing with this. But, I have caregiver burnout. 

There. I said it. Life is really difficult right now. I wish I could be more positive. I wish I could share my life without feeling like I'm complaining. I have tried really hard to hold on to being grateful, positive, optimistic (I'm wearing a shirt that says "optimistic" on it right now!), hopeful, etc. for the last 17 years. I've wanted those feelings to be bigger than my anger, sadness, disappointment, grief, etc. But, I'm losing my grip and it feels like my anger and grief are starting to take over.  I'm at the point where things that should sound like fun - feel like work to me. I just don't have the energy. When it comes down to it, there are things I have to do, regardless of how much energy I have (Harlie's care, making appointments, taking her to appointments, managing supplies, equipment, etc.) so in order to reserve energy, the fun stuff has to go. There's just not enough energy left over for it. 

If you've been reading my blog since 2018 (the "bad" year) then you wouldn't be surprised to hear that I started to see a grief therapist that year. After we had some too close calls with Harlie in 2017 and 2018, I had several friends give me the same therapist's name (and I didn't even ask, haha!). So, I called her in the spring of 2018 and started seeing her. I've been going to her every now and then ever since. I took a long break, but this past November, Tom said I should go see her again. He said he was going to call her if I didn't. So, I did. She's been really helpful. She sent me this image and it is exactly how I've been feeling. Well, maybe adjust some of those labels, but you get the idea. 

I think most people think of grief when it comes to the loss of someone. But, with a child like Harlie, there are many losses over the course of her life. Plus, there's anticipatory grief, because we know that her body will struggle more as time moves on. Of course, the holidays didn't help. Harlie's surgery in October (while it looked short and easy to most, it kicked my ass), planning the We Heart Harlie & Friends Turkey Trot in November, Thanksgiving, Christmas then New Year's - whew! Too much going. Too much planning. Too much doing. Too much eating. Too much drinking. It was all too much. Plus, every New Year's there are so many Happy New Year's! Yay! Looking forward to a great 2024! 

Then there's me, saying with trepidation, Yea, um Happy New Year??? 😬 I mean, I just don't know what the year is going to bring. I'm way more suspicious than excited about 2024. Plus, I knew I wasn't feeling great by New Year's Eve (meaning I could feel a sickness coming on). I couldn't even enjoy a full glass of wine or bourbon (gasp!) and barely made it past midnight. A group of us did the stairs on New Year's morning. The stairs are in a park and I think it is 140 stairs or something and we just walk up and down until our legs shake. Tom did 24 sets in honor of 2024. I decided to honor 2016. Haha! Honestly, that was probably one of our best years. Harlie didn't have a trach then. Oh, the memories can be so pleasant and so painful at the same time. 

Anyway, after that my body was like, nope! I clearly pushed it too far and ended up very sick. I was down for the next nine days. It really sucked because the kids were home from school the first week of January. I couldn't do anything. Poor Harlie. She knew to keep her distance from me. So she stayed in her room the entire week! I barely took care of her. It was awful. I couldn't order her supplies. I think I was only able to wash her hair one time - and I couldn't blow her hair dry at all. I think she gave herself most of her meds. I had to get Murphy to help me with the morning dose when he was here. 

We are having a lot of trouble with Harlie's power chair. The battery struggles to keep a charge. So many times she goes to use it (after charging) and it indicates that the battery is dying. Like on Halloween. We charged it, then we unplugged it and turned it on, and there was only one light. So, we couldn't use it that night. So frustrating when that chair is like her legs. Imagine not being able to walk when you were planning (and looking forward) to taking a walk? Anyway, we scheduled an appointment to have them take a look at it and that was scheduled for Jan. 2nd. There was NO way I could go. So, Murphy took her chair for me. He is so incredibly helpful sometimes. I know community college isn't the most popular - but it sure has it's advantages and I love having him home with us. Anyway, they ordered a new battery. Who knows when that will come in. 

I finally was able to go back to work on the 10th. Then, on the 15th, Tom got sick. I don't know what I had (never tested for anything). Tom thinks he had the flu. I don't think I had the flu. Anyway, he missed a whole week of work, which has never happened! 

We had tickets to see Annie the Musical on the 17th. Since Tom couldn't go, I asked Caylee if she wanted to go with us. She did and we had a great time! Murphy and his girlfriend went on the 16th. Tickets were one of his Christmas gifts to her. Me, Caylee, Harlie and Cooper went on the 17th. None of us had ever seen it before. Tom got us great tickets. He went to the theater in person and talked to someone to help find us the best tickets for Harlie during the week Annie was showing. Since we have her chair, I didn't want to have to deal with elevators or getting there and not having a place to put her chair. They were so helpful and put us in a great spot! This is exactly what I was talking about earlier in this post! Going to Annie sounds like fun - but add in the logistical stuff about parking and seating, taking elevators in the parking garage, taking elevators in the venue - ugh! It just really takes energy away from having fun. Tom handles all that logistical crap and when he is driving I don't have to worry about it. So, him not going was a total bummer and changed things for me for sure. 

But, I have to say, parking was surprisingly great! That garage has lots of handicap parking all together on the first level, so we didn't have to take an elevator (what a life changer!). Then we didn't have to take an elevator inside the venue, either. Plus, someone called us over to a different entrance and we walked right in and it was just great. Really, what a pleasant surprise! Harlie said she loved it, so now that I know we can make it work, we'll definitely take her again. I guess you can tell I have some sort of PTSD about elevators. I think it comes from the children's hospitals where we would wait for an elevator and then people would just jump in ahead of us and fill it up and we'd have to wait for the next one. That literally happened so many times. Even when we were going to the ER at VCU. Sometimes people really suck.

On the 20th, Harlie and I went to Caylee's baby shower. She is due in mid-March. I have more I want to share about this particular day that will shed more light into my current struggles. But, I'll go into that in my next post. I know I've said that before, and then went silent for several months. But, I'm really hoping that won't happen this time. 

Harlie, Caylee and me.

Patti, Melanie, Caylee, me and Harlie

Then on the 24th, Harlie got sick. I am so grateful for how well she can handle a sickness now. She is a true champ! She had some upper respiratory thing, but it didn't progress into something worse. However, by the night of the 26th - I was sick, again! Ugh! Can you believe it? I was so miserable on Saturday the 27th. Not only did I feel bad, but I was just feeling so sorry for myself. Tom had plans to go hiking that day. While I wanted him to go because I know it is good for his mental wellness, I also didn't want to be alone with Harlie all day. I also had to go pick up a prescription for her (that's a whole other story that I will tell you about soon). Luckily, Sandy (my sister) called and I told her how miserable I was and that I didn't want to go out of the house. So her and Rick (her husband) went and picked it up for me and brought it to me. 

I'm feeling better, but still pretty tired. I guess I'm just especially run down. So run down that I couldn't go to Cooper's One Act play at school on the 29th. I feel terrible about missing him on stage. But, I just couldn't go. Plus, Harlie had a big appointment the next morning and I had to reserve enough energy for that because if I can't take her then she can't go. At least Tom and Murphy could watch Cooper at his play. Harlie's appointment on the 30th ended up being a pretty bad experience. I'll explain soon. 

Now, today is the 31st. I got her up this morning and gave her a bath. During the bath I could just tell she wasn't feeling well. It is so funny how there are such small, subtle signs that I couldn't even really explain to someone else that tells me she isn't feeling good. She is good about telling me when she doesn't want to go to school. I mean, she always WANTS to go to school. On Monday I asked her and she said, "It's worth a shot!" Haha! So, when I asked her this morning, she said, "I don't know." Okay, well you're staying home then. Maybe she is feeling as run down in life as I am. Honestly, it has been a rough year (from Jan 2023 to Jan 2024, I mean). Well, I suppose it has been a rough year for 2024, too! 

Maybe February will be better. Not holding my breath of course. I am really hoping we can be done with sickness for a while. 

I have a couple of other big(ish) things I want to share, which will also help explain why I'm feeling the way I'm feeling. I'm hoping to focus a post on each one, to make it less overwhelming. Hopefully I'll get to that very soon. Might even be tomorrow if Harlie stays home from school again. For now, I just had to get some things out. I was feeling like I was keeping a dark, scary secret. Which is probably ridiculous as most who know me are probably thinking Duh!

Okay, as always, thanks for reading! And for those of you that I don't know personally, but have commented - I really want to say thank you for all you said! It is amazing to think you are reading this and cheering us on. There are days when I think no one wants to hear my heavy stuff. But then I read one of your comments and I feel like you do want to hear my heavy stuff. Haha! People want to be heard and want to feel like people care - and you did that for me! So, thank you from the bottom of my heart. 

Much love,

Christy xo