Once upon a time... #PipsLob



Once upon a time, there was a tired momma, who had been dying her locks outta-a-box. And along came another Ginger who sat down beside her and offered to help in any way. So, the momma explained that she had 3-wild-hooligans...


The first hooligan currently rocked hair like a middle-age-woman-similar-to-his-Aunt-Donna. 


The second hooligan had the cutest curls on the block, was the momma's last baby & one little bang trim had him looking all grown up.


But, the third hooligan, she was the wildest of them all.
 


For the past 4-and-a-half years, she had refused any sort of hair clip, headband, hat, even her glasses & currently won't even allow an elastic to hold back her pain-in-the-arse-growing-out-bangs. 


This hooligan was full of sass. 


Extra spicy. 


And normally has major sensory issues. 

But, wouldn't ya know it. Even though the momma fairly warned the beautiful Ginger of potential scenarios, the third hooligan was instead a God Damn ANGEL.


Wanting more and more.

And

ending

up

with

this

LOB


Hello, Stunner!!! 


#PipsLob









#BeatItHarvey


I can't believe the images I'm seeing of this absolutely scary storm. Elderly in nursing homes with water up to their waists, cars & street signs going under and mommas holding their children, trying to get them to safety. 



Can you even imagine? 



I got thinking, if we were ever in a catastrophe, if we didn't have Pip's insulin for her #T1D, or her pills for hypothyroidism and if all we were given to eat at rescue centres had gluten in it & made her sick-to-her-stomach, we would be in very serious trouble. 



Let alone if they served spaghetti...

[I took a 32-second-pee]
I'm thankful today, my biggest problem, was cleaning up this mess of a child and nursing back to health a toddler-poked-at-eye. Right before I snapped this pic, Theo had been kissing every animal I had held up to my face. I tried to take a video but got this moment, where instead of a smooch, I got a two-finger-both-needing-their-nails-cut-jab right into my sockets.


To my hometown Windsor with all it's flooding, Texas & EVERYONE else effected by bloody #Harvey, hold on. 


The rain will stop and the storm will end...


Happy Soul Project has donated to the Red Cross - If you can help, please do so too: www.redcross.org







Inclusion for her & for me...




Dear Mommas,

Once upon a time I had a baby girl named Pip who came with a ridiculous amount of extraordinary needs. And while I couldn't possibly love her more, at times I still grieve her differences.


Obviously in situations like surgeries or medical challenges, I loath the disadvantages & complications her differences bring.



But in situations like today for example, simply another kid's birthday party. I can find myself in pockets of sadness wishing she got to experience it like everybody else. Heck, wishing I got to experience it like other parents. 



This afternoon, both Noal & Pip went to a school friend's 6th birthday. 



I barely even saw Noal, because he was so wrapped up in his friends. 

[She made this face the entire 2 minutes & 37 seconds it took him to get her mask on.]


With Pip however, just her gear alone could tie ya down. 


I came with her Dexom & Omnipod Insulin pump.
I had snacks for lows & test strips for poking. 
I brought pullups & baby wipes because we are no where near potty training. 



And then Pip brought with her.


An ear infection. 
A few meltdowns including when she wasn't allowed to open the birthday boy's presents.
And of course so much sass. 



But, before I could even allow a droplet of grief to cloud our day, another momma shown me extreme kindness just by reaching out. 


  • She kindly got Pip her own gluten free pizza & treats.
  • And she told me how much her son LOVES being in Pip's class & that she was the first person he said he wanted to invite to his party. 


And somehow those silly thoughts I was having about wishing she got to experience things like everybody else. 



They went away. 



She was experiencing it, exactly as she was meant to. 


Friends, listen. Mommahood is hard. And as a special needs momma or whatever you want to call me or us, we take on that & much more. We are utterly exhausted. We are burnt out. We are frustrated and scared. And a lot of the time we feel very alone. 


Our paths are so different that it's a rather lonely road sometimes. 


But when someone extends kindness, thinks outside the box and embraces your child's differences.


That is inclusion. 


For my daughter and for me.


And I wish those reading this spread just that. 






[Pip talking about her day]

What I want my Future Sister-In-Law to know...



My brother said it best, when I heard him tell his fiancé, "You're literally the prettiest woman I've ever seen."


And I can't help but agree.


My future-sister-in-law, Gabrielle is stunning.



Like flawlessly. 


And no matter what, you can't help but feel frumpy anywhere within her proximity.  


Not to mention she saw me and my life, exactly as it is. 


With 3 young kids, one with extraordinary needs, a house full-of-family & me sporting makeup for 2, heck maybe 3, days in a row. 


She saw me wearing a romper I picked up from Giant Tiger, rocking legs in desperate need of a shave.


She got to see an extra level of tiredness, because not only was I staying up-mega-late to play games with everyone, Pip picked up an ear infection, her #T1D was a rollercoaster of lows & my darling 6 year old, 27 pieces of Littles Pet Shop & 12 Beanie Boos were bunking with me in bed.


To really round out the hot-mess-of-a-woman I am, the entire time she was here, I proudly ate like a God-Damn-Teenage-Queen. 


Sending my dad on coffee runs which really meant a Tim's brekki: Grilled Bacon Wrap with extra sauce, XL Dark Roast & a honey crueler donut instead of a hashbrown. You're welcome. To ordering pizza, Greek food, & of course our traditional celebratory Red Lobster.


She got to see a lot of my upper lip from smiling so much, my sillier side & watched as my hand slapped my thighs numerous times because I was laughing so freaking much. 


And whenever the kids pulled or tugged at me, it exposed things like my double-ponch, I'm sure at quite the opposite of flattering angles. 


Add in changing dirty diapers, doing dishes & picking up the dog's shite before each backyard experience. 


And she got me.


She saw me as I am.


And my hope is, she at least saw a loved woman.


A gal who was cherished by her husband, adored by her kids & loved by her parents & brother. And that by marrying into our family, she at least knows she will be as such...







#youwillbeloved
#iamaflyingsquirrel 



Can't STOP Friendship #differentisbeautiful


Today, my sweet Pip had somewhat of a play date. At her old EA's house with her daughters, whom Pip adores. 



We've been talking about it for days. And this morning, she excitedly picked out a swim suit & snack to sling along in her school backpack. 


As I went to knock on the front door, she patted her chest & said, "No momma, me".


So, I let Miss Independence knock alone. And step inside. While, I quietly watched as she gave her EA a giant-choke-hold-kinda-hug. 


Then I cringed & smiled at the same time, cause she tried to hurry me along. Telling me, "Bye. Bye," as one hand shooed me away & the other took the hand of one of the daughter's, she's affectionately nicknamed "KiKi". 


And then she had the best few hours, ever...



She swam and she was silly. She played baby dolls & danced to all her favourite toons. She showed off all her new words & got to learn how to play dress up with older girls, instead of her brothers. 


She played with her friends. And she felt loved and included. 


Down syndrome you can't stop friendships.
Type 1 Diabetes nor can you. 
Celiac Disease, you are a PAIN-IN-THE-ARSE, 
and everything else, y'all don't make things easy. 


But, let today show, for the record, mark it down in the history books. 


That NONE OF THOSE THINGS. 


NO diagnosis or disability can stop people from connecting.





And that right there, is a powerful thing. 


I am, so thankful for that today....







#Soulmates


Dear Pip,
Tomorrow we leave the outrageously awesome week we've been having in Windsor to bring you to SickKids for your bloody-completely-not-fair-11th surgery.


Being here has thrown things off a bit. Normally, you sense this coming because at night I rock you abnormally long, letting tears fall once I think you are asleep, only to have you say nothing but wipe them away with your little hand. Normally, you know when I'm taking you out of your crib, we aren't eating breakfast, you're staying in pj's & we are driving while it's still dark out. Normally, we see the same receptionist who has a Teddy Bear for you and a few snickers for me. Normally, it's nurses we know, hospital gowns you've probably worn before & the operating team is used to my full-on-singing-Adele-like-I-am-giving-a-freaking-concert in my effort to send you off to sleep with something you love. Normally, I know what hallway I can collapse in tears in, before I pull myself together & start shovelling Snickers down my hatch till I get called in to see you in recovery.



But this week has thrown that all off.



This week instead I just watched you. With your grandparents & Aunt Donna. With your brothers & Dad. With my friends & their kids. With any and every stranger you met.



And my sweet girl, I was in awe.


  








I always am. Your light shines brighter than any light I've ever seen. And I'm constantly finding myself wanting to be more like you.



Plan & simple. You are my soulmate Pippy Layne.



You fill a piece of my soul so beautifully differently - That I wouldn't have found me without you.



So, while this time, things leading up to the surgery were outta-norm, I promise you a few things:

  • I will sing just as loud & own it like I have all the other times. And I think it's safe to say we are gonna go with your current favourite, thank you Kindergarten, "O Canada".

  • I may not have gotten to rock you all week, but laying & sleeping beside you was exactly what I needed. I couldn't take my eyes off of you. I tried to memorize your face. How you breath. The way you would wake up every time I coughed, pat my back and say, "You otay momma, you otay". The funny noises you make as you're drifting back off. Everything. Because I am so God damn scared. Like always. That I may lose you.

  • And I promise you that even though this surgery feels a little bit different, NOTHING, Absolutely NOTHING, on the planet feels as incredible than when you are back in my arms.


I need you back in my arms. Okay?

I need you.

Always.

Be Brave my darling.


Love Mom



And then I apologized...


Therapies for Pip have always been a sore spot for me. I wrote this years ago, but it rings exactly true to yesterday during a speech assessment when I lost my marbles:

"I have a love/hate, okay mostly hate relationship with Pip's therapy stuff. I love that it is available & we are being proactive instead of reactive. I love that the people involved seemed to actual care about Pip's progress & are helpful & supportive. I love that we really have seen her develop the last few months- almost as if catching up from the slow start she had at the beginning. But all that positive stuff being said- I still hate it. I hate that it even has to happen..."




Imagine...


Therapist shows Pip a drawing of 6 items & then asks questions to determine her comprehension. 


"Pip what do you watch cartoons on?"


Pip looking at me. 


Me: "I don't think I've ever used the word cartoon to any of my kids. Ask her what she watches shows on."


As soon as I said that, Pip points to the drawing of the tv-made-in-1967. 


So, my problem not only with the Dick-and-Jane drawings, is that, you apparently can't change the words or make any type of gestures - You can't possibly adapt in anyway. 



And these out-of-date-in-the-box-stringent-standardize assessments/tests kinda-sorta-make me cringe. 


My child doesn't get it-right-if-you-will, because she's never heard the word cartoon. 


UNFAIR. 


And I let her therapist know it. 


I ROARED. 


And then had to step back. 


I BREATHED.


And then I was assertive & voiced aggressively what I thought. 


I BECAME A prideful-bi-at-ch-of-a-momma-bear.


And then I sent the therapist an apology email trying to explain from a momma's-point-of-view, why I got-like-I-got. I explained that we have weekly specialist appointments & spend full days at doctors offices and in 2 weeks we are bringing Pip for her 11th surgery. That the handful or more of other medical needs in her life have taken precedent & that speech is something we took on a lot on our own. That through educating ourselves, Signing Times, Youtube videos & minimal speech therapy, she's come a helluva-a-long-way and that so many elements can affect her not wanting to co-operate or "perform" in that setting. And that while I realize she was doing her job, I hope she can understand that these "assessments/tests" sometimes feel like a real kick-in-the-balls...


#onwardandupward #damnyoudickandjane


#wingingithard


Just representing my home, The City of Kingston, that's hosting The Breakout Project


No pressure at all...
And in two days, I give an hour-long-speech at a Queen's University Philanthropy Conference, that I literally only have 5 key points to share, written with my kids marker on the back of a teacher's note. I'm going into it, the very definition of "winging it" for 56 outta the 60 minutes.
This could go ANYWHERE.
And public speaking is NOT my thing.
May I remind you:
I announced my 3rd pregnancy while giving a Ted Talk and told a tv host my ponch wasn't Doritos, but a BABY!

I blamed an entire country and it's magical ways, referring to our 3rd as #blameJamaica on a CBC radio show.
I gave a Huffington Post interview with no pants on.
And one news agency referenced, "Mom's ugly cry" when describing my reaction to seeing Pip's billboard.
So, I'm gonna go ahead and give myself some grace, bring my scribbled notes, my distracted-mommed-out-brain & face these big chats by simply sharing a wee bit of me.

#nowtheponchisallDorito

#RefuseToSink


Today I'm thankful for a partner who buys ice cream when he knows I've had one-hell-of-a-day... 


Yesterday, we waited over-an-hour to see one of Pip's specialist & the entire time, she was an absolute gem. Playing doctor, watching videos, dancing & even colouring with another kid for a bit. But, the moment the doctor came in, she went absolutely bananas. I mean, angrily signing & yelling, while somehow finding the most awkward way to drape herself all over me like a limp doll. She was just past her point. 



And I get it. Trust me, I do. 



Cause when the doctor said, "She'll have to get surgery within the year" in regards to something we weren't expecting, I kinda went absolutely bananas myself. 




In a few weeks, Pip has major eye surgery & we were just gearing up for all that it entails. The long recovery process, the emotional & mental stress it so kindly brings & the fact that it will be her 11th time getting put out. She's only bloody FOUR... 


Coming off the scary week we just had, her being dangerously low & fighting a virus with #T1D, was not the best time to hear she needs a surgery that will put her wee-little-legs in casts for 6 weeks. 



Sometimes, I seriously don't understand how God-the-Universe-Whomever, thinks that one child can handle all that she has. 



We are a little bruised, but we will fight on...






#refusetosink