my twenty- sixth trip around the sun

26 was hard. But not in the way the last couple years were. 

My life is running on two parallels right now. One of grateful-ness, and one of pure broken-heart-ness.

My health is starting to stabilize. And I’m figuring out my new normal. (Yay!)

But, during the last year I lost my two best friends. My grandparents. My world will never be the same. I’ll miss them forever & always. I’ll forever treasure the 26+ years I got with them, but it will never be close to enough time. I don’t know how to go on without them. I don’t know how to celebrate the milestones without them. I don’t know what to do at 9 PM (the time I called them literally every night). They will forever be the missing piece in my life. 

But I also started a new clinical trial. One I’ve been waiting for 5 years… but really my whole life. I’m so excited to see where this trial goes, but so far it has been really, really good. 

I still have some unanswered health issues were working to resolve, but flare-up wise- things have done a complete 180. I’m finally feeling myself again…. Or at least my new self. I’m embracing the change and building back my confidence. I’m proud of myself and my body. I’m making my comeback, so watch out world. 

Some things I’m proud of this year: 

  • My resilience. You don’t lose your two best friends and come out the same, but here I am- still living, just like I know they’d want me to. 
  • I’ve lost 30+ pounds & I’m halfway to my goal!
  • Starting my new clinical trial [with the same team as my last trial!!!!!!!!!!!]
  • We traveled to Philly 4 times & only had minor issues. (I still fit in a plane seat… it’s super uncomfy, but I fit!)

Some highlights:

  • I watched my best friend get married to the love of her life (& we finally got to meet in person)
  • Billy & I went our first trips just the two of us + Patience together…. It was the same weekend as above, but it counts!)
  • We got a new!!!! Adjustable + King sized bed & it’s truly been wonderful & game changing. 
  • I got my new wheelchair & I finally feel confident that it’s not going to try to run me over while riding in the chair (my old wheelchair was the biggest POS + the most unsafe chair imaginable)
  • I found out I’m going to be an Aunt again!!! My bestie is pregnant with a baby boy due in August!
  • I got a Cricut and I’m obsessed with it.
  • We adopted my grandparents’ dog after they passed. Cali bug is thriving at our house & I’m so glad to have a piece of them in my home. 
  • I got to spend 5 days with my niece & it was the first time I got to see her in 18 months. It really filled my cup!
  • Billy & I celebrated 10 years together 
  • I was on Lifetime’s Behind the Mystery.

27 please be kind to me. Here’s to another trip around the sun!

Jealous of [my] Angel, My Nani Goat.

“I didn’t know today would be our last, or that I’d have to say goodbye to you so fast. I’m so numb, I can’t feel anymore.” -Jealous of the Angels, Donna Taggart. 

My Nani Goat.  My Mawmaw. My Best Friend. And as of 12/7/22, My Angel. 

This is [yet another] good-bye I never wanted to say. Never followed by a “Hello Carli Cakes”.

Yet another face that’s missing from the sidelines. A chair at the table that can never be filled. A hole in my heart that can only be filled with the piece you took to heaven. 

I don’t know how to go on. My world is shattered. My short 26 years with you will never be close to enough. 

I got a lot from you. My picky eating. My high- maintenance hair and nails. My eyebrows (if you know, you know). My art skills (again, if you know you know). My stubborn steak. My inability to look at stray animals without taking one home. 

Thank you for letting me spend your last days with you- watching Game Show Network way too loud, eating desserts, and just being silly. 

9 o’clock will never be the same. I called them every single night at 9 o’clock while I was washing my face. It’s that simple routine I’ll miss the most. I can definitely count on many breakdowns occurring because I can’t call to hear her say “Carli Cakes”

I was lucky enough to spend most of my days with her growing up. Especially after school, sleep overs with pizza & ice cream parties, forcing her into watching reality tv with me, or tagging along to dinner or card clubs with their best friends. Those are days I’ll tressure forever and always. 

I have countless memories involving mawmaw. But the two that stick out the most seem silly or insignificant, but they sum us up pretty well. 

One of my favorites was telling her “if my future husband doesn’t shove cake in my face at our wedding, I need you to do it”—so I need someone to take that over, even though Billy will surely take care of it for me.  I don’t know why this memory sticks out- maybe it’s because it’s a prominent reminder of all the things she’ll miss or maybe it’s because it summed up our relationship so well. 

The other is the only time she was mad enough to not talk to me for 3 days. She stopped on the intersection at Watson & 2-70 because “she was in the wrong lane”. She stopped. On the highway. And I yelled at her. She was SO mad at me, that she refused to talk to me. But it only lasted 3 days before my mom & pawpaw talked some sense her, into both of us. It’s a story we tell every time we pass that intersection- which is often. 

She was stubborn, silly, caring, attentive, and one of the best people I knew. 

Man, she had a stubborn streak a mile long.  Her last word was a very clear, and loud, “NO!” which is very fitting.

She hated her nickname of Nani Goat, like really hated it. But she grew to love it as I never let it die. I’m so glad I didn’t. 

I’ll miss making faces at you, even though you hated that too. 

Most of all, I’ll miss my best friend. I love you to heaven & back, Nani Goat. 

Stay Fancy, Nancy. 

I’m An America Ninja Warrior, Too.

Having a disability is a lot like competing on American Ninja Warrior. 

That’s a weird comparison for someone whose body is incased in bone & can’t walk or lift her arms above shoulder level or hold her body weight or even walk. I couldn’t make my way across the Shrinking Steps. I couldn’t make it across the Spinning Log. My wheelchair wouldn’t make its way up the warp wall and forget about spider-monkeying my way up the Power Tower. 

Realistically, I’d be lucky if I could even make it to the starting line (there’s probably stairs, I don’t know).

But, I’m a lot like those Ninja Warriors, it just looks different for me. 

  • Every obstacle is a balance obstacle in my life. While its not Shrinking Steps or running over Cannon Ball Alley… walking is enough of a balance challenge for me.
  • I’m always visualizing my next more, or how I’m going to make it to my end point.  Usually I’m trying to get into a building, but I’m always visualizing my next move.  While it’s not how I’m going to make it on Surfboards… I still have to find a way across.
  • The goal is to always make it to the next obstacle without falling. Although if I fall I’m down for days and there’s not water underneath me…
  • Grabbing the next tool is always the goal. I’m not reaching for a handle on Kilda Scope, but I’m looking for my reacher or walker or wall… whatever I can to hold myself up. 
  • Any task I do takes all ofmy energy. While you can [somehow] make it through 10 grueling obstacles… I use all my energy to go to the bathroom. It doesn’t matter if my energy is on 0.. You just finished the Warp Wall and are looking at the back half of the course and have to find the energy to tackle the next 5 obstacles… I have to figure out how to get from the couch to my bed. 
  • It doesn’t matter what’s behind me… I’m always looking ahead.
  • At the end of a run…. I need a break. 

I’m a warrior too. But like everything in my life- it just looks different for me. While I’ll never stand on the top of Mount. Modonna, I’ll always be on the top of Mont. Carli—and that’s enough for me. 

I am a Ninja Warrior—and you are too. 

5/26- The Day My Best Friend Became My Angel

I lost my best friend today- my pawpaw, my biggest fan. Today he got a new roll- my angel. 

This was the hardest goodbye I ever had to say. It will never be followed by another “Hi Baby Doll”. 

I cried today because I lost you. But I promise, these tears won’t mar the smiles that you’ve given me over the last 26 years.

I knew this day would come. I avoided it as best I could, but death is inevitable. I watched you suffered, and it broke my heart. But now I’m shattered. 

My heart is broken… and you took a piece of it to heaven with you.  

But somehow, life goes on. I still have to go to the doctor tomorrow. I still have to do the grocery shopping. I still have to put my glasses, get ready, take a shower & go on about my day—about my life. How am I supposed to pretend like my whole world didn’t just shatter?

I don’t know how to go on. I don’t want to do this life without you. I’ll still have celebrations. But just like I told you, I was being selfish by wanting to keep you here with me.

I have no doubt in my mind, you were put on this earth to be a grandpa, my pawpaw. I quickly had you wrapped around my fingers and I was quickly smitten with you. I’m so proud to call you, my Pawpaw. Death won’t change that. 

I refuse to remember you by the last couple months. My memories of you will never include that hospital bed or the four walls I’ve grown so familiar with over the last several weeks. Instead, I’ll remember all the laughs & smiles, all the yelling at the tv because the Cardinals were being stupid, all the sleepovers, all the Christmases / Birthday’s/ Graduation’s / Celebration’s, all the cheering me on. 

I got to spend 26 years of my life with you, and though it wasn’t even close to being enough time with you, I’ll treasure it always. I’m so lucky that I spent a good portion of my life with you- from afternoons after school, to dinners just because (at least once a week), to everyday in between- I never took one of those days for granted. 

The last words you clearly spoke were “aye yai yai”. Your last smile was when PayPay did an “up” on your bed. Those last moments will always stick with me, but they won’t be how I remember you- I promise you that.

I know you’re in a better place with all the loved ones you lost. I know you’re having one hell of a reunion up there. I know you’re happy and pain free- and that’s what matters most to me. Go take care of Ralph for me. Say Hi to Grandpa Jean for me & help him out- your grandpa job isn’t done yet. I love you forever & ever, Pawpaw. 

Thank you for letting me spend the last days of your life with you