Thank You Letter - City of Kingston...



Dear City of Kingston,


This thank you has been a long time coming. 


Exactly four years ago my family & I moved here. Two weeks later our little girl was born and unknown to us she happen to have Down syndrome. Add in Congenital Cataracts, Heart defects, Type 1 Diabetes, Celiac Disease and a handful of other challenges and somehow you still end up with the sassiest-most-influential 4 year old I've ever met in my life. 

  

My daughter Pip, not only has changed my life. But she is changing the lives of Kingstonians every chance she can. In simple ways like acknowledging the lady who slept on a bench downtown or bringing a smile to the hospital receptionist. To powerful ways like changing perspectives & influencing inclusion & acceptance. 



She has inspired me to strive for a world, a city, a community where change is possible. Where differences are celebrated and all people are valued.



Yesterday, I pulled my five year old from school so he could be there. I bravely decided to skip my one year old's nap and I knew Pip needed to come as she was the inspiration behind it all. Yesterday I was humbly honoured with a Celebrating Accessibility Award for making a significant contribution to improving access for persons of disabilities in Kingston. 


"Tara from Happy Soul Project uses her voice to inspire people to celebrate those with Down Syndrome and the beauty of people of all abilities and gifts through her blog and projects like the “Difference is Beautiful” calendar."


Even though my kids are young, were way more interested in the refreshment table & my son thought that Mayor Goodway from Paw Patrol would be there instead of Mayor Paterson, it was beyond important that they came.


I wanted them to see and feel the importance of change. 


Thank you for acknowledging my ideas and my contributions.
Thank you for recognizing people trying to do good. 
Thank you for supporting important decisions that in turn provide inclusion.
Thank you for gifting me this award & validating my efforts.

“I started Happy Soul Project with the intent of informing family and friends about our journey with special needs — and since then it’s soared into this beautiful movement — this extraordinary community and i’m so honoured to be the voice behind it and have this platform to create change.”


Thank you for showing my children that one voice can make a difference.


Much love, 
Tara McCallan
Proud Founder of Happy Soul Project



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. 






You are the Cherry-On-Top!!!


Dear Theo, 

Ahh even writing your name. I just realized this is the first time I've wrote you a letter. My heart as a momma & my hand as a writer, ache at the thought of that. But give me some grace & a moment to explain, cause your first year here has been a bit of a ride. It bloody flew faster then any given time in my 35 years on earth, and to me I truly feel time wise you should only be like 5 months old. 


We all called you "chicken" when you were in my belly - You were born, oh so late, came so fast & scared your daddy real good. You were intense, you demanded a voice immediately in the chaotic family you were born into & you fit right in. You make people work hard for your giggles & smiles & if possible you'd prefer to be Velcroed on to me at all times. You have maybe been dressed outside of sleepers, 9 times in the 365 days you've been on this planet. And you didn't get to do things like Baby Yoga or go to music class with me like your brother and sister did. But son, I promise you, you've been so hugged, worn, smooched & snuggled. You are so, so, so loved. 


And so needed.


You've brought me great strength in a time where I felt like I was going to buckle.

You were born and within weeks, your big sister got, really, really sick. Lost a bunch of weight, was ruining crib mattresses despite the most waterproofing methods we could buy, I'm telling ya, you produce some stinky baby-poop kid, but gluten-filled-undiagnosed-Celiac-Disease-crap is beyond, it literally burns your eyes. Every single night or morning Pip would cry out, we'd go running, your dad would take Pip to hose her off, I then had to scrub, clean, start laundry right way, get new sheets, re-waterproof everything, then re-rock, sooth and put Pip back to bed. We had to endure with her test after test after test. And you had to come, at 4-6-8 wks old, nap in a wrap, nurse wherever and you just went along with everything so peacefully. Thank you son. Very much. Cause those days, were oh' so tough, "crappy" if you will, and having you mellow made it so much easier. 



But while you've been such a good-chilled-babe, you're a curious little thing, wanting to keep up to Pip & Noal, taking chances & crawling, standing, destroying, climbing stairs, all faster than what I was expecting. 



Bear in mind, your big brother moved quickly too, I was pregnant with your sister when he was only 7 months old, so it truly was a whirlwind like your life has been. When Pip was born & Noal was still so little, he had to learn to make waiting rooms and doc's offices his playground. Noal learned to distract her when she had needles or blood-work or how to include her in the songs we'd have to sing over and over again. He did what you're doing now & in a way, the silver-lining is we've gotten this uninterrupted "us" time, where y'all have needed my undivided attention. So, in a way I feel it helped kinda create this more creative side in all of you. Where y'all like singing, dancing, playing games and using your imagination and it's because of those moments, we make our own when we are somewhere getting help for your sister.




I guess in a way, all my boys - You, Noal, Daddy & even Deacon - Have all endured a lot, you've seen things most boys wouldn't have to in a lifetime. Yet, y'all are so sweet, so funny and so kind. Y'all have a side of sass, the cutest smiles & a streak of stubbornness that competes with mine.


And y'all in your own ways have brought me so much happiness & love. Cause child, boy-oh-boy do you love me. And trust me, your siblings gave you a good run. But you, sweet chicken, love me, oh, so much. You never take your eyes off me. You clap literally with delight when I walk into a room. You scurry as fast as you can to be by my side. At times I'm sure it's just for protection from smothering Pip & Big-momma-hen Noal. So, not only am I your momma, I'm your safety and shelter from those two.



And in turn you are that exact thing to me - My shelter. You've held me together in a time of great loss. Where I've felt weak, where I've wanted to buckle, where I've lost my way and am struggling to choke down my fear. This year has been a doozy filled with hospital stays, Type 1 Diabetes, more appointments & lessons learned than ever before. But you, my love, ground me. You bring a wee bit of normalcy, taking care of you, rocking you, nursing you has been my safe place. 


The carved out moments where it's just you and me, is where I feel I finally just get to breath. Where I think, where I pray. Where I digest all we've all been through. 


You are ONE today and NOWHERE near done nursing or letting go. Nor am I, cause these moments when you need me and I need you, need to carry me through a wee bit more. 



You are my peace, my comfort, my little delight. 

You are my forever baby. My last, you are the cherry on top. 

You complete the HomeTeam, You're a hoot and so cute. 




I so love you son. Happy 1st. 





P.S: You are such a fidgety little thing. I mean kick-flapping-to-never-stop-moving-to-jumping-or-always-swatting-at-my-face-while-nursing-little-jitter-bug. Just something I want to remember about when you were a baby, because you forget you really, really do. When your big brother was born, I remember asking your Grandma a memory about me as a baby & she couldn't recall. And it desperately sparked something in me to try. I don't keep baby books, or record milestones, I don't print photos or keep mementos from others. But I write you and your brother & sister these letters, to soak in my moments with y'all. Help them not fade & for you to have to know yourselves, know me and know how very loved you always were...


#HappySoulProjectHomeTour
ALL PHOTOS BY EDEN GROVE PHOTOGRAPHY