Hug Harder Today...


Today I'm thankful when he is scared in the middle of the night he still calls out momma, that he uses cuddles to delay going to sleep for hours, that he plays with his food & frustrates the heck outta me, that he doesn't want to share his toys, pushes his sister & gets annoyingly silly. Because, today I'm thankful he is here.


Today I'm thankful when her eye tears up, I know she has lost her itty-bitty contact that is beyond a pain-in-the-arse to put back in, that she has hours upon hours of appointments, therapies & specialists to see, that she can't eat gluten, takes medication for her thyroid, still wears diapers & absolutely refuses to wear her glasses. Because, today I'm thankful she is here.


Today I'm thankful that he wakes up every 2 hours seeking out his momma, that he pukes directly in my freshly washed hair that now seems like a luxury to clean, that he snorts & makes weird little noises in the middle of the night & that he cries unless I'm holding or wearing him. Because, today I'm thankful he is here.


Seeing my best friend deal with losing her sweet boy to cancer has been heartbreaking - And now another close friend, lost her little boy suddenly & I still can't even begin to wrap my head around how excruciating the pain would be.


So, I'll wake up any hour despite being exhausted to comfort mine. I'll take in each & every cuddle even through I have things to do & Netflix shows to watch. I'll argue the benefits of veggies & negotiate "one-more-bite" deals and I'll give timeouts & encourage silliness.


So, I'll work on getting better every time I take care of her eyes & cherish the its-okay-hugs that make her feel better. I'll drive across the country to see whomever can help her thrive. I'll learn to bloody cook even though I can barely make scrambled eggs, continue holding her hand, change diapers till she's 13 & wear fake glasses myself to encourage her to wear hers.


So, I'll wake up any hour despite being exhausted to comfort, nurse & sooth him. I'll use baby wipes, wear my hair in a bun & pretend I'm the only one who faintly smells baby-milk-puke. I'll sleep less but more peacefully hearing him breath, knowing he is okay and I'll let him cling to me & be the biggest momma's boy out there. 


Friends, you never really know how much time you get to be their mommas, so hug harder today.


All I want for Christmas is Celiac Disease...Wait What?


Every single time Pip's doctor says, "We got the results back from her blood work", my heart skips a beat, I brace myself for the dreaded Leukemia news {heightened risk of developing with Down syndrome} & I breath out gratitude when it's something else...Her heart issues, Hypothyroidism & now today Celiac Disease


Now, don't get me wrong I'm not jumping up in down thanking Sweet Jesus by any means. First, I cry, I swear, I get angry, I get jealous and I get mad, real freaking mad. But then I hold my little girl tight and I try to breath out gratitude.



When the doctor told me, Pip will have to be put under general anesthetic to have a scope and biopsy done next week, I couldn't stop the tears. This will be the 9th time...


9 times I've had to dress her in one of those awful hospital gowns. 9 times I've had to hold her begging God that it's not the last time. 9 times I've had to sing her to sleep in an operating room. 9 times I've nervously sat and shoved Snickers down my hatch in a waiting room. 9 times I've never been more grateful in my life when she's back in my arms in recovery. 


I really let the whole "9-times-pity-party" have it's way with my emotions for awhile today, in between getting angry & swearing. Out loud, in my head, to God, to the minivan steering wheel as I punched it, to my husband, heck I think this time I even swore with the doctor. I just truly feel like me & my sweet girl can't ever catch a break. It's been one thing after the other with Pip medically and I can barely breath in between each new diagnosis. 


Pip has already been & is still going through so much - And now Celiac Disease, I mean this is life changing. It's not like it's just a pill or medication to take every morning, this is a complete life change and means more appointments, another specialist to add to her already full rolodex, working with a dietitian, increase blood work and sooooo many dietary changes.


So, now 2 days before Christmas, Pip will rock yet another hospital gown, I'll eat 7pds of chocolate and we'll do this yet again.



I think you have to choose to be thankful in life and even though I feel like grabbing Fate or God by the neck and screaming, "Enough, seriously enough already." I also want to grab Fate or God in a big-huge-momma-bear-hug and say, "Thank you. Thank you that it's not cancer & it's Celiac Disease."

We will learn to deal and in the meantime, please send Snickers my way.

Spirit, Sass & Sweetness....

I can't believe my sweet Pip is 3 today...So very much has happen in 3 years and I can't help but reflect {mostly at 2am while nursing Theo and looking back at photos and memories} on it all. I could sit here and write a book about her diagnosis, all her surgeries, having the fear of God put into me at the thought of losing her & coming to terms with it all. Or I could try and write some wise, deep, momma filled words about how much she's changed me & how very much I love her. 



But I won't. Today, I simply want to just celebrate her. 


Her spirit, her sass & her sweetness...


This little girl, beyond anything has taught me to see the beauty in living a life painted outside the lines. 


So to celebrate her, the 4Cats Art Studio in Kingston was kind enough to host a paint splatter party that totally reflected everything that is Pip...

Surrounded by family & friends we got covered in paint & cupcake icing & just loved up my little girl...


Happy Birthday Pip - I love your spirit, sass & sweetness.








#RedforMaiysn


"This night last year our whole world came crashing down.....My husband and I decided at about 9pm or so to take our son Maiysn to London sick kids ER. I still remember watching my husband carry our little boy into that hospital and how Maiysn was clinging so tight to his daddy with not a worry in the world, fully trusting that his parents were taking care of him....Little did we know that we would never walk out of that hospital with him again...They immediately looked at him and told us he needed to be in the PICCU (pediatric intensive care unit). They did blood work, x rays of his belly, and within a short time we were told he was in liver and kidney failure. They told us this wasn't good and they were going to do their best to try and get his kidneys working again....As soon as we got to the ICU something in Maiysn changed. He was mumbling words, he was confused and he was never the same! I remember they kept offering me a chair, or somewhere to sleep, but there was no way I was leaving his side!!!! My hands never left his warm body that whole night because I kept telling myself that I will never get the chance again to touch his soft warm hands, and maybe I felt like if I closed my eyes, or stopped touching him, that he would just give up!" 


This is what my best friend wrote remembering last year at this time. This is what a momma went through when losing her little boy. This is what a momma had to deal with when cancer decided to get involved. This is what every other momma's nightmares are made up of. 


This my friends, is tragic, unfair & so heartbreaking. This is what cancer can do. 


But what cancer can't do, is take away who Maiysn was to his momma. 


"Maiysn used to say to her "I love you more than you love me, mommy". And she would always say "that's not possible"


Cancer can't take away his memory or the legacy he's left behind...Tomorrow, November 17th, is the first anniversary of the day my best friend had to say good bye to her little boy. And while I literally suffocate just thinking of the pain she is dealing with, I truly can't even begin to imagine all she's been through. 


Tomorrow will be so very hard for her but I want her to know we remember Maiysn - We always will. Tomorrow, the legacy he left behind will soar and 100 Kick-It-Capes will be given out in honour & in memory of a little boy who touched so many. 


But friends, I also need you to help us remember him: 
 
  • Tomorrow please wear RED - It was Maiysn's fav colour and I joked with my best friend today, that if/when I make it to heaven, I'm going to give Maiysn heck for picking the only colour I don't wear, as his favourite. So please, wear RED & post a photo using #RedforMaiysn so that my best friend can feel the love.
  • Do something kind for others - Maiysn had such a kind, sweet spirit about him. The last time I saw Maiysn was a few weeks before he passed away and I wanted nothing more than to just hold him. And that’s what I did - So tightly and for so long, just soaking in all I could of him. And later Maiysn told his mom, "Auntie Tara was holding me too tight, my spleen really hurt but I let her cause I knew she wanted to." He just endured my snuggles, almost as if he knew I needed them. So do something kind for someone else in memory of him.
And
  • Please join Little Hands Kids for a Cause Holiday Toy & Loonie Drive in memory of Maiysn - All toys will be donated to hospitals & programs that helped him when he was in treatment. More information can be found HERE.

Imagine if you can, for even one second, the deep pain you'd feel of losing your child. To me it would be the biggest heartbreak in life. My best friend described it well when she told me her heart is just so "heavy"...

So, help me help lighten the load a wee bit & keep Maiysn's memory alive. 


The Baby After My Baby with Special Needs...


My beautiful-BIG-baby boy Theo was born almost 2 weeks ago & everything about him so far has been incredibly intense. 


This 3rd pregnancy was far more intense in terms of how I felt, how sick & tired I was & as a kicker, how long the little bugger stayed in


The labour & delivery was outta-control-intense, racing & just making it to the hospital, him arriving 48 minutes later at a whopping 9.9 pounds. We can all go ahead and just agree that me & my vagina get a gold freaking star for this one. 


But what I'm finding even more intense is how I feel now. The awe I felt when my first two children were born is there. The overpowering sense of love is there. The feeling like he belongs & was always meant to be a part of our family is there. But a new feeling, that I can't shake is also present. 


A feeling I blame his big sister for. 


You see with Pip, we were in a way, cheated out of the "newborn stage" - She was born & days later we were told she had Down syndrome, Congenital Cataracts, Congenital Heart Defects & more. We went from being in a "new parent bubble" to trying to keep our daughter alive & get through each surgery, each challenge, each hurdle. We went from innocently kissing her sweet newborn head to kissing through tears, while begging God to let us keep her. We went from figuring out each others bodies & breastfeeding to learning how to put in a feeding tube & look for signs of heart failure. We went from looking into her beautifully speckled Brushfield spotted eyes to maneuvering an itsy bitsy contact into one of them, patching the other & constantly being aware of if the contact was in place. We went from nothing was wrong, to what felt like everything was, in just a matter of days.


And in a way it's coming back to haunt me now. I don't think I got to truly think about it during the time because it was just survival mode and then move forward. 


But now every time Theo snuggles into me, I subconsciously think, "Oh no, little guy your contact" and then have to stop myself because he doesn't wear them. When Theo is breathing erratically instead of knowing all newborns do this, I automatically remember the signs of heart failure & begin to panic a little. And even though I know he doesn't have Down syndrome, I am checking the folds of his neck and the creases in his hands. 


It's almost as if I have to re-learn to just be...Just be still, take in & enjoy this "newborn" stage that I missed with my daughter. 


So, in a way I'm kinda thankful for having my last baby, after a baby with special needs. It's making everything more intense but it's also making me more grateful, more aware of every passing moment & more appreciative of what we've been through & what an absolute gift every baby & every day really is.


So, I'm intensely soaking it-them-Theo all up...
 


The Waiting Game....


I never felt this before...

- The daily anticipation that it could happen
- The not sure what to plan because it could be any day now
- The maybe it's go time cramps, back pain & exhaustion

I never felt this before because my first two babies were early...Noal was 3.5 weeks early, put me through 21 hours of labour, almost made me get a blood transfusion & I ended up passing out. Good bloody times!



And Pip was almost 3 weeks early; we had just moved across the province to a new city & had only been living there for 2 weeks when she rocked our world...Literally. I feel like in a way with her, I was "cheated" out of the newborn stage - We were slapped with her Down syndrome diagnosis, petrified of the holes in her heart & geared up for her first surgery at 5 weeks old



But with #3 well it's just different. With this one, well he isn't officially "over due yet", but I just thought he'd be here by now. I thought by early October I'd be getting baby snugs, breastfeeding like it was my job & running on even less sleep if that's even possible.


And while I'm physically way over being pregnant {this one has been my hardest yet} and I'm anxious as anything to get on with things & meet our little man, I'm kinda trying to take in these days with just my Noal & Pip...


See to the two of them, they have had each other their whole lives...Noal was only 7 mths old when I became pregnant with Pip - He even thinks him and Pip were in my belly together, he truly doesn't remember life without her. And while he's so excited to have a little "broder" & Pippy couldn't possibly be any cuter snugging my belly or "her baby", I know that this will bring with it big changes. Changes I don't know if I wanna make because there are some things I absolutely adore more than anything in our lives right now.
  • The way I still rock Pip to sleep and she falls asleep on my shoulder all nuzzled into my neck. 
  • The way I can still manage two kids out in public, at a grocery stop or at the bus stop. Add another one, with a car seat & diaper bag and I'm tired just thinking about venturing out let alone doing it.
  • The way Noal still crawls into our bed at some point through the night and wants to sleep cheek to cheek & in his sleep says "love you momma".
  • The way I still have to hold Pip half the time because she's tired of walking or lazy or just wants to be close.
  • The way the car seats were behind me in my van so I could pass them stuff, tickle their toes or wipe their nose at a light. Now I'm literally throwing arrowroot cookies back at them like a MLB player hoping for a catch.
  • The way we have family time every night - Dinner with the 4 of us, baths & books and chats.
  • The way Pip still feels like my baby & Noal is my "favourite boy".

And while I love all that we are & wish change didn't have to happen, I know #3 will complete us even more. I know that soon it will feel like he's been here the whole time.

And I guess if he's making me play the waiting game, I should relish in the way we are now.