Wednesday, October 23, 2019

Soon You'll Get Better...


Do not read this without a Kleenex. I am not going to be responsible for you crying without a way to wipe your eyes. If you don’t have one yet and you are not willing to wipe your tears or nose on your shirt – stop and go get something. I don’t ever give this much of a solid warning – that should be your first clue, you need a box of Kleenex. 

While I was researching one of our upcoming comedians for the JukeboxKellye Howard, I started listening to her "Be Less Petty" series on YouTube when she started an episode with a Maya Angelou quote that hit me hard, reminding me I need to write. My mental well being depends on it. I have to make time to write. 


So - here we go...

Fun Holly fact. In 2007 in Las Vegas, I “met” Taylor Swift in the women’s bathroom. By “met” I mean, I had no clue who she was but said, “hi” to her as I washed my hands and wished her a good day while we stood by each other at the bathroom sink in the MGM hotel in Las Vegas. I didn’t know who this tiny person with long beautiful, perfectly spiral curled hair wearing the white sundress and cowboy boots was – but, she looked like she needed a minute to prepare herself before walking back out. While I had my picture taken with many country music stars that day (none of who I knew but my friends did), I couldn’t bring myself to ask her for a picture. She looked like she needed a friendly smile, and reassurance that she didn’t have to be “somebody” at that moment. And that is what I gave her. We were simply two people saying “hi” and wishing each other a good day at the sink. I’ll never forget it though. Somewhere I have a blurry picture of her walking out of the bathroom and being rushed by fans. One day, maybe I’ll go through that massive tote of pictures I have and add it to this blog. (The relevance of this will come later...)

The past 5 months have been some of the hardest of my life. Allison’s JDM (juvenile dermatomyositis) diagnosis has really been a hard one for me to mentally work through. As a parent, at least as a momor at least for me – everything in your world stops and forever changes when you hear that your child has a life-threatening anything – in our case, an autoimmune disease.  Everything. The words “life-threatening” even when you know it should be treatable never stop bouncing around in your head. Ever. Or at least not yet in the last 5 months.

We had a pretty good scare with Allison in early August. As we were about to leave our last appointment at 5 pm on that Friday – after multiple appointments with good news – my phone rang. It was Allison’s doctor, something wasn’t good with one of her tests. She needed a procedure done the following Monday. Allison had plans with her friends that weekend so we came home, then quietly Sunday night, without telling anyone (a very few close family and friends knew), we returned to Mayo for her Monday morning procedure. Her dad and I by her side until they moved us to the waiting room, Grandma at the hotel nearby with Parker and William, Jen and Dan just a text away – we sat quietly waiting. We spent a few hours in recovery before the long drive from Rochester to home. We knew it would take time to get all of the test results and even then, nothing could be confirmed until we returned in early October to repeat some tests and compare.
It was some of the longest weeks of my life.

During that time, in late August, my friend Cortney posted one of Taylor Swift’s new songs on her Facebook page. “Soon You’ll Get Better” written about her mom’s experience with cancer, is what Cortney shared. I won’t lie, even after briefly “meeting” Taylor, I never listened to her music. It didn’t exactly fit into the music I liked. I had nothing against her and always remembered the girl in the bathroom when people would talk crap about her – that girl that looked like she was trying to convince herself she belonged there when I could see she really did, even without knowing her. So, despite my soft spot for her, I’ve never heard a song of hers (Sorry, Taylor!) and I didn’t click on this one because of her. I clicked on it because it also said, “Dixie Chicks” and those ladies, I adore.

Nothing prepared me for what I heard.

Nothing prepared me for the images that went through my head.

Nothing prepared me for buying and downloading the entire album and falling in love with Taylor Swift either (but that’s for another day! – Seriously, her album “Lover” is freaking amazing. I listen to it repeatedly in the background and in the car every single day. I am obsessed with every single song on there. Amazing. For real.)

People often tell me when I write, that I am saying how they feel or think – that it is like I am inside of their minds. This song did that for me, and still does every time I hear it.

I haven’t written in a long time. I’ve been keeping a lot bottled up inside of me. I’m struggling with this diagnosis. It is kicking my mental well being’s butt. I’m so scared, sometimes I can’t breathe.  I am trying but most days, I am seconds away from a panic attack scared of making the wrong decisions with this.

I know that Allison's outlook should be really good once we get things under control and on a good treatment path. I tell everyone she will go into remission and stay there. I also know all of that is wishes and sometimes wishes are nothing more than the bullshit we try to swallow to make it through another day knowing we damn well may be wrong. And waiting these past several weeks knowing our lives were possibly about to change in a significant way reminded me of how fucking scary and life-changing JDM can be and I hated it, even more than I had before.

No one wants this for their kid. No one wants to have to make the decisions of what really strong drugs you will have put into your child’s body in an attempt to make it better, not knowing long term what the impact may be. No one. No one wants to Google the diagnosis, the medications, the infusion therapies, the MDA5 antibodies, or all of the other things you Google knowing you shouldn’t but you believe knowledge is power so you do it anyway despite it leading to sleepless nights.

This song though it laid it all out. I have been listening to it for almost 8 weeks and I still cry every single day when I hear it. It is so deep in my soul and so true to my heart that I don’t know that I will ever be able to hear it without these images flashing in my mind or my daughter’s face and smile the image I see when I close my eyes.

This song is so powerful, raw, and real. It is what is going on inside of my head every day.

I’m going to post the lyrics first, with the images I see when I hear them (or sing them because you all know I’m singing this every single time) and possibly some thoughts, then I’ll post the song, which I really hope you will click and listen to. After you do, re-read the lyrics with the images to put it all together. Ok, deep breath… are you ready for this?

Soon You'll Get Better

The buttons of my coat were tangled in my hair
In doctor's-office-lighting, I didn't tell you I was scared


That was the first time we were there




Holy orange bottles, each night I pray to you
Desperate people find faith, so now I pray to Jesus too


And I say to you



Ooh-ah, soon you'll get better
Ooh-ah, soon you'll get better
Ooh-ah, you'll get better soon
'Cause you have to




I know delusion when I see it in the mirror
You like the nicer nurses, you make the best of a bad deal


 I just pretend it isn't real



I'll paint the kitchen neon, I'll brighten up the sky
I know I'll never get it, there's not a day that I won't try
And I'll say to you




Ooh-ah, soon you'll get better
Ooh-ah, soon you'll get better
Ooh-ah, you'll get better soon
'Cause you have to



And I hate to make this all about me
But who am I supposed to talk to?
What am I supposed to do
If there's no you?









This won't go back to normal, if it ever was




It's been years of hoping, and I keep saying it because
'Cause I have to




Ooh-ah, you'll get better
Ooh-ah, soon you'll get better
Ooh-ah, you'll get better soon


Ooh-ah, soon you'll get better
Ooh-ah, soon you'll get better

Ooh-ah, you'll get better soon
'Cause you have to




For the record, we didn’t get the bad news we were bracing ourselves for 2 weeks ago. Miracles happen, prayers work, and sometimes, crappy new just isn’t meant to be. Millions of pounds of weight that was sitting on our shoulders disappeared that day, and everything changed. We were all breathing again. Our confidence that we can get Allison into remission was back, stronger than ever. My mom described all of us as “giddy” – and we were. No words can describe that feeling.
It did mean we started the Rituximab infusions. Her 2nd one is this morning - this is the first time, since our first trip on May 29th that she is at Mayo without me. I thought I was ok with this. She's with her dad, who I know loves her as much as I do, who also wants to be there for every single moment. So it isn't like she isn't in the best of hands - she's at the Mayo Clinic for goodness sakes - you don't get better than that. Staying home with Parker felt like the right thing for me to do this time - until now when she is there and I am here completely losing my mind. The infusions will deplete her body of all of it’s B-Cells – and the MDA5 antibody. It wasn’t an easy decision but it was a necessary one.

We can’t say there will never be bad news with the JDM in Allison’s future. I wish we could and I pray we don’t ever have to cross that bridge but it is a reality that will always be in the very far back of our minds. We will watch her closely, keep her with the best doctors as the Mayo clinic, and brave the path ahead of her – together.

Now… we breathe again, celebrate this victory and, we pray. And... listen to some Taylor Swift. If this ever happens to pass Taylor's path, or the Dixie Chicks... Thank you for this one. I needed it. 


Take a moment to listen to it.... 




I'm not sure if I am supposed to put some disclaimer about not owning the rights to this song or the lyrics but if I do, here it is, if I haven't said this is Taylor Swift's song enough (lyrics and vocals), I'm happy to say it again - this song belongs to Taylor. And I'm incredibly thankful she shared it with the world. 

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