December 2021 Mini Update

I started this post on Monday, December 20, 2021...

Hi. I know I don't blog as much as I used to. Life changes, as you know. As the kids have gotten older, it is definitely much more challenging to share our life so openly. I don't think Harlie cares as much as the boys, though. It wouldn't be right to share stuff about the boys at this point. It hasn't been right for a while, really. And now, I know they have the ability to read my posts, which makes it harder for me to be as honest with my feelings as I used to be. I still like to shield them a bit, or at least feel like I'm doing it.  

At any rate, it is almost Christmas and I am sick. I tend to get what I call "stress colds" and they kick my ass. I guess we were just trying to do too much and it caught up with me. I went to get tested, just to make sure, since we have family coming over for Christmas.  Honestly, I was more worried about the flu than Covid. Harlie has been hospitalized every time she's ever had the flu and/or RSV, and she was fine when she had the original, full-strength Covid last year. In fact, my Facebook memories from this week are from when she was hospitalized with RSV in 2016 (when she was 10). Crap, so even my cold could be worse for her! Anyway, my test results for Flu A/B and Covid were all negative, so that's good. 

So, it is crunch time for Christmas, and I am down and out. I can't run errands, work or get anything done. I really wanted to take the kids to Lewis Ginter for the lights, but we've run out of time, it is difficult/impossible to get tickets and honestly, I am trying to stay away from Harlie, just in case. I'm just feeling like I'm letting Harlie and Cooper down with not being able to be excited about Christmas. I know it isn't the end of the world, and they will get over it - but I feel it anyway. That's just the way feelings work, but you know that already. 

I am still working on a blog post about my Grand Canyon trip in October. And I really want to blog about the surprise 50th birthday party Tom and our friends threw me a couple weekends ago (on December 11th). My actual birthday isn't until the 25th. So, I'm not 50 - yet! Anyway, the party was amazing! They really outdid themselves and I felt sooooo loved!  Thank you so much to Tom, my friends (Lindsay, Marcy, Patti and Bethany) who helped plan it, and to all my friends and family who came to celebrate with me! You won't believe this - but my friends Ann (lives in Arizona) and Whitney (lives in Colorado) traveled all this way to celebrate with us! I hiked the Grand Canyon with them. It was SO amazing to see them standing there when I walked in the room. I don't know how I got so lucky with the people that love me, but I'm so grateful for each and every one. I'll give more details later, but for now, here are two photos...

Me and Tom

Me, Ann and Whitney.

I STILL can't believe that Ann and Whitney came to my party! Love them!

There really are so many great things about my life that I love (that party was proof). But, despite that, sometimes the sad things creep up to the surface (like when I'm sick and feeling weak). One of the blog posts that has been viewed lately is this one called Jaw Distraction Post Op Day 1 from Harlie's jaw distraction surgery in March of 2020.  I read a post like that and I have to wonder how the hell are we okay? We started off the freaking pandemic like that. How have we survived?! I think I get past the bad stuff, but really, I just pack the memories in a backpack and carry that shit around. Each horrible experience passes, and I keep shoving those memories in that already too full backpack. It is in moments like this that I really feel how heavy it is.  

I don't know why I'm sharing this. I guess because usually, when you share how sad you are feeling, it makes the burden a little lighter. And, for some reason, I want people to know that sadness (grief, really) doesn't turn off and on. It is always there. It just depends on my current mood/strength as to how deep I can bury it. 

On a positive note, I do know that I will feel better soon. Which will be great. Last night, I was feeling so horrible about being such a downer during this last week before Christmas. I told Harlie that I was really sorry that I couldn't do anything. I warned her that we might not be able to go see lights before Christmas. I asked her if we could go after Christmas (which to me, is NOT the same) and she said, yes. Then, as she was walking out of our room, she turned to us and said, "I just go with the flow." 

Thank God for her and her amazing attitude. 

Also, I just want to let you know that I am in the process of getting Harlie an evaluation with the feeding clinic. A little birdie read my last post and reached out to me to let me know that there is not a waiting list to get in.  Can you believe that? Anyway, her doctor is going to send an order and I will get her scheduled soon, I hope. 

Also, I haven't been able to tell you, but a few of her doctors referred her/us to genetics months ago. Like, early 2021. Well, that appointment finally came around in November. I had two appointments, one with me and Harlie and one with me and Tom. The one with me and Harlie was a full history thing. It took about an hour. Something I'd love for anyone who knows me to know and fully understand about me is that my brain is mush. I don't remember a lot about what happens. People tell me things, and I forget those things. It doesn't mean the things mean nothing to me - or that I don't care. I promise! It just means that my brain is damaged. It has been through a lot, and it took some hits for sure. I'm guessing it also knows that I cannot afford to forget Harlie's stuff. So, it has to prioritize, make room, if you will. 

So, during this appointment with the geneticist, I had to go back to my pregnancy with Harlie and those early months. I remembered it all. Well, I suppose you remember the things that are traumatic and my pregnancy certainly was. Again, I don't know how we did it. Anyway, I had to answer so many questions! Basically, she said that Harlie is the perfect candidate for whole genome testing (they are going to look for "spelling errors" in her DNA). DNA has come so far since she was born and now testing can be done with just a cheek swab. Since she has numerous congenital issues that aren't normally found together in one person, she feels confident that we will learn something. Who knows? Will it change anything? I don't think so. I really never asked why she was born the way she was. I haven't had the time or luxury, I guess. Plus, it is so often a question that is never answered. 

The second appointment was with me and Tom. We had to answer a bunch of questions and give consent. They are going to take our cheek swabs, too, so we had to let them know that we want to know whatever they learn.  She asked us specific questions like, "If we learn that you have ____ do you want to know, or not know?" We said we want to know whatever they find. It will take several months till we get the results. Might be interesting.

Another thing I haven't been able to blog about was the We Heart Harlie & Friends Turkey Trot on Thanksgiving morning. It was so great. But, funny story, the genetics doctor that I met with about Harlie signed up to run it. I saw her name, and thought, wow, that's funny. Then I saw her at packet pickup and she said that someone mentioned they should run it and she thought, oh, I just met with a patient named Harlie. Funny. Small world. 

Okay, that's it for now. I'll post more when I feel better and have more energy. 

February 10, 2022

Well, as you can see, I never hit "publish" on this post. I find it a little more scary to share the not so positive posts. Which is probably pretty silly, because I don't know anyone that doesn't get sad now and then. I know I've earned it, not sure why I try to hide it so much.  

So, I'm going to post this one and then start working on my next post. I have some updates on Harlie to share (feeding, etc.)

Thanks for checking in!

Much love,

Christy xo