Ear Tubes Can Blow It....


Today Pip had 6 appts - Yep, 6...We were in the hospital at 9am till after 4pm...That's a looooong day for a little girl who wants nothing more than to practice walking or scoot on a dirty floor...To be trapped in my arms or in her stroller was not her idea of a good time...Add the blood work, contraptions going up her nose, instruments in her ears and removing/replacing her tiny contact lens and well I'd say today was a D+...


For me, having to hold her down, making sure she doesn't move for some of these procedures when she's screaming and looking at me so confused as to why I'm letting people hurt her, kills me....


So on an already tough day, I was then told that Pip will need to have another surgery...Bloody tubes in her ears because of fluid, which again is quite common in kids with Down syndrome...And while I realize it's common in a lot of kids and the actually surgery itself isn't the biggest of deals - It's still another surgery for Pip, it's still another time under anesthetic, it's still another sleepless night beforehand for me, it's still another day where I stuff my face & fear with snickers, it's still another moment where I have to give up my daughter and learn to let go...


I feel like my sweet girl just can't catch a break...It's like you find out children with Down syndrome can have this, this and this and for some reason my little Pip has got them all...Congentital Cataracts - Check...Congenital Heart Defect - Double Check... Hypotonia - Check....Hypothyroidism - Check...


I know I told Fate to "Bring It" the other day but I'd love for this to be Pip's last "Check"...

Got that Fate... 







And have to note that while I had a good cry about all this, Pip really does put this and my life in perspective - This is her at our last appointment of the day...I mean, come on...

It's for these families....#differentisbeautiful Calendar


I wish I could explain what I am feeling right now....I'm just getting home from our #differentisbeautiful Calendar Casting Call & I can't really find the words to describe the pride I have in what we are doing...


I honestly didn't know what to expect - I was hoping more than 3 kids would show up and had other projects to discuss with the photographer to fill in time if it wasn't busy...


What happened though blew me away...


There was a line up of people waiting when I arrived - Shocked.


Families coming all the way from Toronto & Oshawa, Special-Need Workers who follow the blog bringing in clients, dads bringing their kids because moms were working, parents coming with pictures and information because their children couldn't make it and mommas almost as excited as the children themselves...


For 2 straight hours people came and I didn't even have time to take a sip of water...It was that busy...Awesome right? 


The vast amount of differences & diagnoses we saw was eye-opening, amazing & something I'm so very excited to feature in our calendar...



But what blew me away the most, and gives this calendar such purpose was the similarities in each family despite the different diagnoses...

Photos by Eden Grove Photography

I got to spend time, sit & chat and really understand what their child's difference{s} was, the struggle, the constant doc appointments, the therapies, the worry, the treatments, the future prognosis. And well the journey for each diagnoses was different, the core remained the same - The path may have been harder but the love & pride was overwhelming...


The #differentisbeautiful Calendar is for these families...It's to let them share that pride that I got to see today...It's to show them we think their child is outrageously beautiful...It's to honour the hours, days, months they spent in hospitals, doctor appointments, seeing specialist and therapies...It's to stand beside them and pat their backs for a job well done...It's to allow them to shout from the rooftops that their child is special, important, valued and bloody awesome...


I'm so honoured to be putting this together and can't wait for y'all to see the kids who will be involved...


Today my heart was pretty damn happy. 

Bring it....


If what I "preach" is different is beautiful, then {or than?} I better walk the walk right? It's almost as if Fate, God or whomever wants to test me...Make me prove to the world that what I want others to do, celebrate and believe in, I best be doing myself.


So bring it on...


Today Pip had her first appointment to get fitted for foot/ankle braces - Hypotonia is common in most children with Down syndrome and basically it means Pip has low muscle tone...She's "floppy" which also means when she hugs or snuggles into you, she kinda just melts...You wanna swoon, you cuddle with Pip...


So on top of the nasal feeding tube, 


eye patches,


little contacts & baby glasses, it seems Fate is not finished...


Now, Pip will be sporting these little braces {minus the cast-like look, think more of a pink butterfly finish} that hopefully will help develop her mobility. 


The process itself isn't the funniest as you need to get your child to sit, preferably still {ya right}, while they mold a cast, let it dry and carefully cut it off each foot.


Thankfully we probably had the best Orthotist out there, who I'm not joking, let Pip play and then pull her hair as hard as she wanted to keep her busy...



When Pip wasn't abusing the Orthotist, I was ramming the only thing I had in my purse, a delicious-dry-as-anything-fig bar down her hatch, or she was having a major meltdown trying to escape us...



Good times...


So, in the upcoming weeks when the braces are ready, Pip will rock them like she rocks everything and I'll keep walking the walk...


Take that Fate..





Soar Fiona Soar


When Pip was first born I desperately wanted to connect with other mommas who were new to parenting a baby with Down syndrome...It's easy enough to find Down syndrome groups online & seek out information but I wanted to kinda walk hand in hand with someone at the same pace...And then I happened upon Stephanie Palewicz who had a little girl with the most stunning Brushfield speckled brilliant blue eyes I'd ever seen. Her name was Fiona and like Pip she had Down syndrome, heart issues and was almost the same age...


It was fun to watch our girls grow up online, see similarities and celebrate milestones or successful surgeries....However, it was beyond devastating two months ago when Fiona passed away...It really shook me up, the unfairness of it all, seeing this momma utterly broken and wondering why I was lucky enough to get to keep my Pip...


While I am moved to tears constantly whenever Stephanie shares in her grief, it is in watching the grace she's shown in honouring her sweet girl that makes me in absolute awe of her...


Stephanie started Fiona's Hope Totes and explains:
"During our 9 month hospital stay, we experienced the highest highs and the lowest lows.  There were nights we couldn't leave the hospital because she was so sick and days we feared may be our last with her. There are no words that do justice to the way a parent feels as they helplessly watch their child fight for their lives. We understand your pain, your sadness, your fear...we also understand how important it is to never, ever give up hope, and that is what we aim to reinforce with our tote bag care packages.
 These totes are just a little way to help with some of those things you find yourself needing or wishing you had when you are spending long days or nights...or both, in the hospital with your sick child. It's a good "hospital bag" to haul things back and forth between the hospital and home and back. It's basics for those unexpected overnight stays.  It's something to occupy your mind for a while when you feel like you can't take another minute there.  
It's a cozy blanket to use when you try to catch a nap on an uncomfortable hospital couch or chair and real Kleenex to use when you can't stop those tears from falling. It's snacks for when you can't leave the room to get dinner or candy when you just need a comforting treat. 
 It's a little reminder that even though sometimes it feels like it, you are not alone in this world."

To find out more about Fiona's Hope Totes click HERE 


So today marks 2 months since Fiona has been gone....And Stephanie has been so brave in allowing us in on her grief - She shares herself and all her raw and heartbreaking thoughts:
"What I want to accomplish by sharing this grief journey with others is to teach people what grief really means.  If it is a loved one grieving, here is what they are going through no matter how strong they try to be.  If you are going through grief, if you have lost a child, don't be ashamed of your grief or feel like you need to get over it or move on faster than you are ready.  There is no timeline.  And you can ask for help, that does NOT make you weak, it actually makes you stronger.  I learned that a long time ago when Fiona was critically ill at a month old.  I felt like I couldn't get through the day, I couldn't function, I couldn't focus.  I was depressed and anxious, I was worthless.  I asked for help then and I have asked for it time and time again.  And thats ok.  I feel weak, but I know that I am strong because I am alive.  I may have pills to help me sleep, to keep away the horrible flashbacks, to keep me from falling back into severe depression.  And I am okay with that right now because I am alive.  There isn't a mom alive that has lost a child that has not contemplated their own death because the feelings of despair without them are so intense, they can't imagine living anymore.  Its not a pretty subject to talk about, but it is important.  Because unfortunately, there have been mommies that have made that decision.  They didn't get the help they needed, didn't ask for it.  I totally understand that feeling.  It is the worst feeling in the world.
I have been told that this feeling will subside over time.  I have to have faith in that and keep pushing forward, asking Fiona for strength so that I can spend the rest of my life continuing her message and keeping her legacy eternal.  That is what I am trying to accomplish through sharing our journey here on caringbridge, sharing past videos and pictures, and pushing forward with Fiona's Hope Totes through www.fionashope.com  


This momma and her heartbreak are always on my mind...So I wanted to do something to let her know she isn't alone, that we grieve with her and that Fiona will always be remembered...So with the help of talented artist Becca Smith and the generosity of Stella & Dot Stylist Melanie Jackson we we're able to put together this little Awesome Eh? Package...  


Stephanie, please know your grace and bravery is inspiring and I'm so very sad I can't watch our girls grow together...My heart is so heavy for what you are going through...

Soar Fiona soar...






Just Cause - Well Played Fate....


One thing I wish I could take back when I found out Pip had Down syndrome, was all the tears I cried, sobbed, wept yep wept is the right word, over the relationship I thought Noal would have with his sister...I was so very sad thinking he had been "cheated" of an amazing friendship like I had with my brother...


Oh Fate you funny, thing you....Daily you show me how very much I have to learn...



Most mornings when Pip wakes up from her nap, Noal goes running into her room, climbs up into her crib and has a little play...It makes for some of my absolute favourite moments, because I just sit back and watch them and reflect on how different I feel about their relationship now. 


Today, however, when Noal heard her crying he said, "Oh no momma" and went storming up the stairs and into her room with such purpose...Once he maneuvered his stumpy little legs over her crib rails he cuddled on in, patted her back and kept saying, "It's okay sweetheart, you okay, I got ya sweetheart". 



Fate well played...Very well played...


P.S- The hooligans shirts can be found in our shop HERE...