Punch in the Face on #WDD


Yesterday was World Diabetes Day & it came & went without me even acknowledging it. 
 

And it's not like I didn't know, it's more like I didn't want to give up my-plain-and-ordinary November 14th just yet. 


I'm not ready to. 


It's been 90 days since my Pip was diagnosed with Type 1 Diabetes. And I still wanna punch it in the face EVERY SINGLE DAY. I still don't get it. 


It's a disease that is not for the faint of heart.
It's a disease that is not for the weary. 
It's a disease that is quite simply not fair. 


I've literally become Pip's pancreas. And no matter what I do. Nothing stays the same. 


One day she's low & the fear is unconsciousness or seizures. 
One day she's high & the fear is keytones & Diabetic ketoacidosis. 


Add antibiotics, morphine, numerous surgeries & now a diet of juice & Popsicles & I am all the more convinced, Diabetes is EVERY-BLOODY-DANG-DAY & a cure is absolutely NEEDED. 


So,

Next year. I will be ready. 
Next year. I will be better. 
Next year. I will be an advocate.


This year I will let it pass.






Just in case...


Dear Pip, 

Tomorrow we face another one & I just wanted to note a few things that I want-need-have to remember:


  • The way a smile takes over your entire face when I come into your room in the morning. How you're always sitting crossed-legged chatting it up with your dolls, but you shyly lift your eyes to match mine and say,"BOO". How you then pop up, reaching your arms as high as they can go & sweetly say,"Hi momma".
  • The way as soon as we hit the bottom stair, your little hands are already in the position to sign for "music" & before I can even ask you what you want for breakfast you've already yelled out "tooooast" six times. The way you continue to yell out your order, when I'm asking your brothers what they want. 
  • The way I catch you feeding your puppy food or tossing over something hitting the baby's highchair. The way I tell you no and you then look at them, wagging your little finger pretending you are me, telling them, "no no no no".
  • The way you giggle every morning when I'm changing you out of your pj's & point to your belly wanting a quick tickle. How you then point at your Dexcom & tell me "Daddy" did that & demand a brave-fist-pump.
  • The way you always try to put on your hat or shoes or coat with such determination but then decided who gets to help you instead.
  • The way you strut down our driveway, are so adamant about getting a big smooch and then insert your independence taking-what-feels-like 3 minutes to get up the stairs of the bus. 
  • The way your little Owl backpack makes you look like a big girl and a baby all at the same time.
  • The way you come barging in after school, tossing your shoes, giving your baby brother a quick hug & your puppy a kiss. 
  • The way you then hug me so tight it almost feels like your knocking the wind outta me. 
  • The way you light up when your big brother gets off the bus, jumping up & down and yelling out, "Hi Nooooooal, hi". 
  • The way you "chat it up" at dinner, telling us all your stories, pretending the dining room table is a piano & singing "Let it Go" or "Hello" at the top of your lungs.
  • The way you splash no matter what we say or how stern our voices get in the bathtub.
  • The way you make me rock you, some days longer than others. Just knowing you or I need it. The way you gently don't let me get up and you mutter, "No momma", so we rock and rock and rock away.
  • The way your eyelashes feel because our faces are smashed so close together - And on nights I tend to drop a few tears, you tend to squeeze me even tighter.
  • The way right before you fall asleep, you reach out, touch my face and smile.
  • And the way you love sweet girl - It is everything.


I need to remember all of these things. Just in case. 


I hate that I even have to think "just in case", I hate that tomorrow I have to sing you to sleep and wait to hold you in my arms to finally breath again. I hate that I had to co-ordinate 3 different surgeons to perform numerous surgeries or exams on you.  I hate that when we get on that dreaded hospital gown, you'll start to get uber clingy, refusing to let your arms leave my neck. I hate that you have to clock in more hours, in a hospital you've already spent more time in, than most would their entire lives. I hate that you're going to go right bananas trying to rip out the IV & screaming for me even though I'll be holding you as soon as they let me. I hate that T1D complicates everything so much more. And I hate that this time, more than ever, it feels like you know what's going on. 


So, Pip I need you to be brave & strong once again. I need you to be okay & I need you to remember a few things yourself:


  • Remember how much your big brother loves you - How he made you a card with pictures of you & him. How he stood up and told your entire Kindergarten class that, "Pippy is getting her balls out." - That's what he thought those hangy-things-called-tonsils are. 
  • Remember how much your baby brother adores you - How he follows you around, lights up when you play with him & is going to miss you. His entire life has been as your little sidekick.
  • Remember how much your Dad would do anything in the world for you. How he drives around the city looking for the gluten-free banana bread you like, how he takes days off to be with you in the hospital & how he calls you "his peach" & loves you more than any other girl on the planet.
  • And then remember me. And just know I am everything because I am your momma. 

I love you Pippy Layne. 
I need you.


Please be okay.





P.S - I've gone with Row Row Row Your boat & Twinkle Twinkle Little Star when I'm singing you to sleep in the operating room - But you & I both know, I'm busting out HARD with Adele's Hello tomorrow...



The Down syndrome Club...


It's a Club I didn't really know existed. 
It's a Club I didn't know I wanted to be in. 


It's a Club that fights hard, loves big & connects in a way only we-in-the-club, really understand.   







    

But it's also a Club, I am a tad wee jealous of...



You see, it's almost like I don't get to enjoy or explore that piece of her because I'm dealing with so many other aspects of who she is or what she has.



We were told back-to-back-to-back that our daughter had Down syndrome, Congenital Cataracts & Heart defects with no time in between to comprehend or look back. And since then, it's been one thing medically after the other. It's like Down syndrome was put on a shelf while we dealt with everything else and we haven't had a moment to take it down, dust it off & really get to know it. 


It's a Club that I feel like I'm missing out on because I'm in so deep with everything else. 



And I guess that's why i love 2017's #differentisbeautiful Calendar so much, because I get to share those parts of her, that I love so much. I get to share what I find cool about Down syndrome. What I would say if I gave a little talk to her school or did a presentation to a class. And in a way this calendar makes me feel like I have my feet in the doorway of the Club - And one day when all the stuff she actually suffers from is more manageable, I hope to be a more active participant. A bigger advocate. A momma that goes on Buddy Walks, celebrates Down syndrome Awareness more & significantly recognizes what it means in my daughter's & our lives. 



It's a Club I was once so scared of & now desperately want more of. 



Until then I am a Proud Member since 2012


Together with the Canadian Down syndrome Society - We have put together a wickedly cool basket with CDSS t-shirts, a Happy Soul Project sweatshirt, a 2017 #differentisbeautiful Calendar & one of our Be Awesome Today signs made by artist with extraordinary needs.


To enter: Simply share this blog post & in the comments below or on Facebook let us know you've shared it. A random winner will be picked by the Canadian Down syndrome Society.