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

The Reality of Needing Care…

I probably seem crazy picky & overly demanding. It probably seems like I have control issues & OCD.

It probably doesn’t make any sense to you why I yelled at you because you put my cup of water on the left side of my tray and not the right.

You probably don’t understand why I’m mad at you because my pants leg isn’t cooperating while you’re trying to get me dressed. 

But what you don’t understand is, is that I don’t have enough strength in my right hand to pick up that glass of water. That’s why I keep the remote on that side and my water on the other. 

Or that positing myself so that you can get the pants on me is uncomfortable & pushes bone into bone, which is extremely painful.

Caregivers don’t get enough credit.  

I know it’s annoying to position me. I know it’s annoying to get the 192472972 million pillows in place, getting my blanket just right, making sure everything is in its proper place & that I can reach everything I could possibly need (phone, iPad, TV remote, lighting remote, water, etc). 

I know it annoys you that I called you as soon as you left the room…. For the third time, because I forgot I needed a napkin. I get it.

Caregivers don’t get enough credit.  

Your frustrated because “I’m not communicating my needs well”. I’m frustrated because it’s the same routine every day… literally every day, for the last 10+ years.  

I’m not asking because I don’t want to do it- I’m asking because I can’t do it without you. I hate feeling like a burden. I wish I could help more, but the reality is- I can’t.

Dealing with me is a pain in the ass (I get it, half the time I don’t even want to deal with myself). But here we are…dealing with me & all of my BS. 

Caregivers don’t get enough credit.  

I know most of the time you’re probably thinking this girl is batsh*+ crazy. I know you get frustrated with me on the daily (more like hourly…okay, minute-ly) basis. I know some communication gets lost in the frustration. I know I think you can read my mind. I know you think my OCD is overboard. I know you think I’ve lost my goddamn mind. I know think I’m just being meticulous, but the little things, to you, are very big things in my world. 

Caregivers don’t get enough credit.  

I’m doing the best I can to make our lives easier… with a little bit of my Type A personality sprinkled in. I’m just trying to function in this world that clearly wasn’t made for me. 

So next time I ask you to get my thing-a-ma-jig, while simultaneously being frustrated that my pedals aren’t down, know that- from the bottom of my heart, I’m sorry that I am the way I am. I mean well, but that too is lost in the frustration of being cared for / giving care. 

Thank you for learning my idiosyncrasies (even when you forget). And for putting up with them.

Thank you for helping me, even when it’s the last thing you want to do.

Thank you for giving me the care I so desperately need.