This part of her....


If you told me two years ago I'd be celebrating World Down syndrome Day with thousands of people cheering on my little girl, I'd laugh and tell ya to "beat it"...Two years ago I barely knew this day even existed. Two years ago Pip was in heart failure and I was just starting to wrap my head around this part of her called "Down syndrome".


This part of her that scared me oh so much and had me in such devastation thinking about what it would mean to our lives.


This part of her that I was so unsure of, simply because I unintentionally was unaware.

This part of her that invests hours upon hours, days upon days of extra care; Doc appts, therapies, speech, etc. etc. etc.


This part of her who caused other complications with her eyes & heart and left me breathless in fear and trusting in hope, surgery after surgery.


This part of her who needed braces to help her walk, glasses to let her see, tubes to allow her to hear and medicine daily to keep her thyroid functioning.

This part of her when you look at in black in white on paper seems like such a negative thing. But this part of her is now something I so fiercely celebrate and love because she wouldn't be my little Pip, without it.


On Friday thousands upon thousands of people will be celebrating this part of her...And I can't even tell you what that does for this momma's heart. 

Happy World Down syndrome Day friends...






Big thank you to the Kingston Frontenacs for helping us celebrate World Down syndrome Day and the beauty in differences....Please join us if you can. And once again the ever talented Eden Grove Photography captured Pip perfectly in all of these shots.




50 Years from Now....


I'd consider myself to be a pretty-easy-going-roll-with-the-punches-kinda momma. But two things in particular just about do my head in: Potty training for obvious reasons and getting children out the door, especially in the winter. I'm always running late, I mean always, so that with the added nonsense of boots, coats, hats, mitts, times two just about makes me wanna hibernate and call er a day.


Take this morning, my one day when both hooligans are at daycare and I get to actually work. Pip went up and down the stairs about 13 times, Noal refused to put his boots on the right feet, Pip didn't want to wear mitts and Noal kept distracting the whole process by singing to her which she loved.

And right before I was about to get all outta sorts, like they always do, they took me down a notch and showed me really what matters...


 "Look momma, I can even kiss Pippy through the stairs."

They kept kissing, Pip laughing each and every time and Noal beaming proudly because he made his "girls" happy...


You think that would be enough of an emotional hug today, but oh no Fate was not finished...Walking into daycare, Pip was a bit slower and having a hard time on the snow, so Noal kept pushing her along and holding her hand...

And in that moment when I took this sweet, sweet pic, it was as if this was them, 50 years from now. It was as if this was a glimpse of my sweet boy taking care of his sister, when my husband and I are gone. It was as if Fate once again was showing me, they have each other and everything will be okay. 




P.S- Noal is the King-of-Time-Outs in our household but Pippy always has to go sit beside him to make sure he's okay. 


We channel "Beyonce" and I kinda love it....


Back in the day, okay not so long ago, but before kids when the drinks were a plenty in my life. I used to get what my husband says a bit "Beyonce-ish" when I had a few too many...It was like once that over the top drink hit, I had a streak of "Miss Independence".


My girlfriends, I'm sure can back up this claim but to give an example, so y'all can picture it properly - When my husband & I lived in Ireland, we lived city centre right in the smack of one of the greatest cities in the world, Dublin. And Dublin comes with pints, music and fun just about every night of the week. For us it was Fridays with our co-workers and friends. One such channeling my inner "Beyonce" time, I thought it made sense to walk home bare-foot, because my tootsies were killing after thinking I was killing it on the dance floor all night - Obviously another trait Beyonce and I share...But when my rational-trying-to-help-boyfriend-at-the-time-I'm-lucky-he-still-married-me-husband tried to reason with me, I stormed off with my arms in the air proclaiming, "You don't own me"...Proud moment for sure.


Well the reason I'm sharing this oh so lovely tidbit of my past with y'all, is because I think the "Beyonce sassyness" has been passed down to my son...The other day he had dental surgery and everything went okay till he started coming out of the anesthetic. He was kinda like the one too many gins in his momma...


He went berserk - I mean buck wild...Trying to rip off the IV, flailing around like a wild animal, clinging to my neck one minute, throwing himself on the floor the next, pinching a nurse and then demanding new water because his wasn't "cold" enough...He let his inner "Diva" come out and I even had to carry him to the van wedding style, in just his coat because he refused to put his shirt on - And then went off, because the zipper was cold on his belly. Good times.


I tried to tell the nurses, he was actually a really funny, lovely little boy. They just laughed and said, "They've seen this reaction before and that they know he is funny." I must have looked puzzled as to how, so they told me what the Doctors and operating nurses told them. And while I was in the operating room to witness it myself, I still had to giggle that they felt it was funny enough to share.


Lately whenever Noal farts, he looks around to make sure someone is watching him and then he says, "Ooops, kiss from Uncle Two Cheeks." He then laughs hysterically and I obviously can't help but laugh right along with him.


Now I don't know if Noal could sense I was scared or sad or what, but right before they put the mask on him, as I was holding his hand and about to sing the song we had chosen together. He looked up at me and said, "Ooops, kiss from Uncle Two Cheeks momma."


To which I obviously started giggling and then had to tell the operating team what he meant...The room exploded in laughter, I mean loudly, the Anesthesiologist may or may not have snorted. It totally took the stress in the air outta the room and the size of Noal's smile, knowing he made people laugh is a story I will tell his whole life. 


So, at the end of the day I kinda love that my boy has a bit of "Beyonce" to him. He's strong, knows what he wants, is independent and outrageously charming and charismatic...


He knew in that scenario, when his own momma was trying to be brave, by making her laugh it would ease her heart. 






P.S - Here's our "dental surgery" song...I may just watch it forever because I don't think there is a cuter little boy on the planet.


To the Radio Station that described the weather as "retarded"...


The other day one of your Radio Host so eloquently used the word "retarded" to describe the weather. It was brought to Happy Soul Project's attention and we posted this on your Facebook Page:


I didn't post it so anyone would lose their job or get in trouble in any way shape or form. I totally realize it wasn't said in malice or directed at anyone - It was simply used as slang in a way that someone wouldn't even realize they are offending anyone. 


See here's the thing. Before I had my daughter Pip, who just happens to have Down syndrome, I probably used that same word to describe my brother when he annoyed me, any form of exercise because I can't stand it and like your Radio Host the weather. It wasn't said with the intent to hurt anyone, it was used as "that's so gay" might be. Not in hate but still both wrong. 


I mean even after having Pip, close people in my life still use the word without thinking. And while I'm not normally an "R-Word Crusader", I do have to honestly admit I cringe inside each and every time I hear it said. 


And if I cringe and am not  ├╝ber sensitive about it, you can imagine how hurtful it would seem to others that are. You see some people fight tirelessly to spread the word to end this word. And then to have it so causally used in the media, it's as if it takes all their efforts back a bunch of steps. 


There is also the issue and responsibility of being a voice and changing social perspective starting from behind your microphone. Because we are consciously making an effort to not use that word in our home, to then have my 3 year old hear it used to describe the weather through the media, is not right. I understand he will hear it at school, within society, through friends, etc, but the media should be the place where we are leading the way on change. 


You've issued an apology: 


And I want to applaud you for listening to others and realizing one small word can hold such power. But after reading comments from others, there is obviously still so much to do to educate that change:


 "If she loses her job it will be retarded..."
Wow...our society is way too sensitive. If you are afraid of being offended don't listen to any sort of media...or venture outside your home for that matter. Get a life.", "it doesnt surprise me that ppl are taking a big defense to the word 'retarded' or any bad word for that matter, we can't sing our national anthem at school because we defend ppl, we can't say merry Christmas: because we defend ppl and its all complete bullshit if you ask me"
"This is retarded to be discussing this. Its a word. A word that can be used to describe and emphasize many diferent things"
"O ya bc im over weight should i take offense of the holiday fat Tuesday... its just uggg a friggin word people get over it." 
And a real special one "Here is a new word some people are fuctards'.


Listen, I get it, I really do, I'm a writer, I live and breathe words. It is just a word. But look what one little word can do. Look what one little word can evoke in people, both good and bad. Look how one little word can powerfully start a conversation. 


So, I guess in a way thank you for describing the weather that way. Because you started a greater conversation to bring awareness to where change is needed. 


Cheers,



Some Days vs Most Days


Some days are really dark being a momma to a child with Down syndrome, Congenital Cataracts, Congenital Heart Defects & a slew of other "special needs". Some days you are beyond frustrated because hours upon hours are spent in therapies and appointments. Some days you are so desperate to just hear the word "momma" instead of teaching how to sign. Some days you are jealous of other kids lapping your little one in milestones and accomplishments. Some days tracing the scars of their many surgeries, almost chokes you in fear like the days they happened. Some days you can't believe the ugly in the world when people say/write/think; "Why didn't she abort", "Down syndrome babies are a drain on our taxes" or "Their lives are useless."


Some days are thankfully just that...Some days. 


Most days are filled with so much happiness because of contagious laughter. Most days are filled with pride at the determination in accomplishing everyday challenges. Most days are drenched in joy because what really matters is what is being presented. Most days are filled with such a deep thanks because your child survived and is showing you and others just how much purpose their lives hold. 


Most days are filled with nothing but gratitude because you realize most days trump some days. And some days make most days that much sweeter. 







*This post is to celebrate all the Brave Heart Warriors out there and celebrate CHD Awareness Week - My little girl's heart surgery was life changing and something that will stay with me forever. To those who are fighting, those that didn't make it and those going through it - Fight on Brave Ones, fight on.*

All outrageously adorable photos by Eden Grove Photography.