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