Category Archives: Uncategorized

❄️Chill with Bob Ross❄️


Last nite we were snuggling as a family on the King Size in our room… we were watching Bob Ross paint a beautiful picture of a gorgeous wintery scene – he is so Chiiiiiill, it’s unbelievable! And all 4 of us enjoy watching him paint; it’s so calming – anyway… the point is, while we were cuddled in niiiice and close; it was so quiet and peaceful while Bob was just painting away… I was listening to Mia breathe. It was laboured, and she was very obviously struggling. Of course I’m concerned, so I ask her, “Mia, are you ok?” and exhaustedly she replies, “Ya, I just had a hard day, and I’m really tired.” Wanna know what she did that made her so tired? She decorated a gingerbread with her cousins at my parent’s house… then we had Christmas Dinner with Mark, Sarah and Anna at Thea’s. It was all wonderful! She had fun and we enjoyed ourselves very much… but the point is, that’s it!! That’s all she did. She has less stamina than that of an out of shape 40 year old. Mind you, she is enduring day 2 of yet another ‘Site’ change, and she doesn’t sleep well… but Man! I feel for this kid. Having PH really does suck!! Maybe it’s a good thing that I’ve never loved winter… and maybe when they’re up for it, Mike can take Allie to do fun wintery things like tobogganing and outdoor skating; while Mia and I stay in and just Chill with Bob Ross 😉

PS. If ever you’re feeling anxious,  watch Bob Ross paint a picture… it really does help! 

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😳Holy Scary Day, Batman!

I just got home from dropping the kids off at school, I’m just washing my face, you know, getting ready for my day — And I get a phone call — Crossland PS — my heart literally always stops every time that number comes across my phone… so what now? — PANIC!!
I answer the phone, it’s the office manager, Andrea. She very calmly tells me something to the tune of: “Chris, the alarm on Mia’s pump is beeping. It says there’s a blockage and the pump has stopped. She’s kinda freaking out what can I do?”
In my mind: Oh F*ck!
But what do I say?: “Ok thanks, can I talk to her for a sec please?”
Mia (thru tears): Mama, it’s beeping and I’m scared”
In my mind: Omg! Omg! Omg! Are you f*cking kidding me? WTF? What the hell do I do? Shit. Shit. Shit.
But what do I say?: “Ok baby-girl, no biggie, we’ll be right there. Love you, kiddo”
In my mind: Holy F*ck!! OMG! Omg omg omg….Where’s Mike? Ok, alright… yes! He’s out gettin’ stuff… Ok. Call Mike… he can drive us both to the school. I don’t want to do this alone!!! Ok… VM. NoOoOo! Ok. It’s ok… call again VM. Breathe Chris… just breathe. Call again. He answers! “Hey babe… can you swing by and pick me up… the school called, the alarm on Mia’s pump is going off… it’s saying there’s a blockage – and the pump has stopped… we gotta go, Okay?”
So I start gathering up the stuff that I know I’m going to need when there’s an emergency… well theoretically… because I’ve never actually had an emergency before!!! I have no idea what I’m about to face; so I grabbed my emergency bag — ALL of what I need is always in that very well-stocked emergency bag that I carry everywhere I go — I grab my manual aaand out the door I went. Ummm, ya so… it’s cold out today, I’m standing like an idiot freezing my ass off in my driveway just waiting for Mike, who, in my mind, is taking FORever (even tho I know he’s not) so I go back inside and grab the keys to the other car – cause seriously; I cannot get to the school fast enough!! – when Mike pulls up. I jump in, I’ve already got Laura on speaker phone and while we are driving toward the school, she’s giving us on instructions on what to do when we get there. (Laura is the nurse associated with the pharmacy who supplies Mia’s drug and she is part of the 24 hour Remodulin support line) We pulled up to the school… and thru the window we can see that Mia is calm… she was laughing and being silly with Robin, Andrea and Nadine.
In my mind: Thank God she’s not hysterical!!  Hysterical is so much harder to deal with. This group of staff are absolutely amazing! Ok – So, that’s the mood we need to go in with order to keep up with her current state of mind… Excellent. Good to know..
So when we walked in… you’d probably never know we were actually scared shitless!! In fact you probably would believe the opposite was true… you would have thought we’ve done this a thousand times before, like it was no big deal and that it happens all the time. We’re Laughing. Making jokes. Making sure no one is freaking out… especially not Mia!! Using everything in my emergency kit, and with nurse Laura on FaceTime, we’re calmly figuring out what the heck was wrong, why is this alarm going off!?!?
In my mind: Is Mia even getting any her medication? Holy Shit!! How much time do I have left? OMG! I am ACTUALLY living my nightmare.
This is the first time the pump’s alarm has ever gone off AND of course the first time has to be when she’s is not even in my presence!!! This is the first time I’ve gotten an emergency phone call!! This is the first time I have to use the emergency procedures that I’ve only read about, but I have yet to see; let alone perform!! And not only is this is the first time I’m doing all of this, but I’m doing it with an audience!!  And I can’t even freak out, because I am trying not to freak out Mia!!! Finally we figured out what the problem was… It was actually a malfunction in the pump itself. That means that this time her life was never actually in danger: BUT WE DIDN’T KNOW THAT!! In MY mind: It felt like my daughter was attached to ticking time-bomb, and WE were the Fricken Bomb Squad!! Lemme tell you… that was intense!!

And when it was all over, after we’d found the problem, remixed a cartridge of her medication and hooked her up all safe and sound to the back-up pump; even tho she was a little shaken, Mia stayed at school. I guess she felt confident that I knew what I was doing (if she only knew what was in my mind!) So when we were done, she just went about her day as if it was absolutely normal; like nothing out of the ordinary had happened!! New Normal?  Maybe?, that’s all we ever want for her.
But let me tell you… as soon as I took one step outside of that school. I started hyperventilating. I couldn’t control my breathing. And I sobbed uncontrollably. I believe I was on the verge of a panic attack.  I gave my head a shake as I tried to comprehend what the hell just happened? What did I just do? What if….? And then I broke-down ~ Into a completely useless sobbing mess. I took pretty much the rest of the day to shake it.. I really hate stress.

I am really glad that I am able to display a pretty calm appearance on the outside, when I was shaking like a leaf, scared as hell and wanting to die on the inside. That was reeeeeeally really scary!! Realistically, I can say that that was the scaredest (is that is even a word?) thing that I have ever had to do since before her diagnosis. And I have seen and done some scary shit! I don’t wanna do that again. Holy Crap. Just breathe. Breeeeathe. Exhale…

UPDATE: Laura got the pharmacy to ship out a replacement pump immediately so that we didn’t even have to think about not having a back up pump. It arrived 4 hours after we left the school. incredible. 

Finally! Some Good News! 🤗✨🤗

I just talked on the phone with Allison – she’s the Nurse Practioner to the sleep Dr. at Sick Kids. We have spoken spoken on the phone before, to set up Mia’s an at home sleep study (with the Oximeter: one nite with the oxygen mask & one nite without)   And when I talked to her this time she sounded absolutely exuberant! 

Here are my notes… hope you understand them… 😬 

I say… Yay!!! That’s definitely a Victory! Now… Bring on the Cure! Wahoo!!! 🎉

#TemporarilyExhaling #BeBraveAndSparkle✨ #AnotherVictory

Feel Better Fairies

Since Mia’s diagnosis of PH, I have definitely discovered that there really are some people in this world who truly do have hearts of gold. I refer to these people as ‘Feel Better Fairies’.  They are helpful, loving, kind, selfless, generous and… always around! Be it a kind word of encouragement or a gigantic hug right when I needed a shoulder to cry on. Or perhaps it came in the form of a London Fog, an unexpected text, cooking a meal or taking the kids for an hour or two so we can exhale; even for just a moment… These Feel Better Fairies really do help to keep our spirits up so that we can continue on this journey Sparkling with Hope. 

One such Feel Better Fairy recently gave my mother some money for me with instructions: She is to spend it on herself… on anything she wants. My guess is that this fairy was thinking that I may need something to lift my spirit up. 

So what did I buy?… INK!

Yesterday I went to see Lyndsey, my favourite (and only!!) tattoo artist and she created for me the most spectacular piece of art that I believe honours the significant role that Feel Better Fairies play in our lives. They do this just by being who they are and loving us the way they do, and as a result they are making this horrific journey feel that much easier and way less lonely. 

Isn’t she GORgeous?!?! 

It’s not all bad…

Katrina: “Hey Chris! How are you? I know it’s kind of a silly question to ask huh? I know your household has been having a hard year which is truly an understatement.”

Chris: “I’m not bad. I’m actually learning a lot of life lessons through this. And I believe I’m becoming a better parent! Not to mention learning what’s important and what isn’t. I’m discovering the people I thought would be there for me every single step of the way; no matter what… don’t even say hello, let alone ask me how I’m feeling. But that’s OK! Not everybody was designed to be a support system. It’s absolutely fine. I figure a lot of it is all in the attitude, right? Some days are really really shitty, I’m not gonna lie and pretend they’re not. But other days, we’re actually awesome!! I’d say we’re becoming closer as a family. And that’s all I’ve ever wanted… A family who is real and loves unconditionally. Because that’s what’s important. Thank you for asking 😊 
How are you? Are you having the time your life out there in New York? Is it everything you hoped for? Or is it completely different?”

My Family! I can’t tell you how much I love being part of this Clan! ✨

Just Breathe… 

She is sleeping without oxygen tonight. We’ve been told they need to know since being on the medication, how she reacts to sleeping both with and without the O2 mask. She has an Oximeter hooked to her finger to measure heart beat and oxygen saturation. She hasn’t slept without that oxygen mask for even a single night since she was diagnosed with PH and had the sleep study. Before that, she was seizing in the middle of the nite, and we were running off to Sick Kids Emerge!! And so tonite will the first time she will sleep without it since then… And we’re supposed to just be living as if we have normal a life!! Ha ha ha ha. Nope. Trust me when I tell you; Ain’t nobody sleeping tonite! We are taking some comfort in knowing that her her Oxygen sat is averaging 97/100 and her resting heart rate ranges anywhere from 52-120… right now it’s sitting nicely at 60bpm. But try as I might, I’ve learned to never let my guard down!

Holiday Teacher Gifts!

https://phacanada.akaraisin.com/pledgesforph/ebe21490d52d4b96934e0329afa4bb1a

^^ WHAT’S THAT ^^
It’s the time of year where as parents we are left wondering… What the heck are we supposed to get for the kids Teachers to say THANKS during the Holiday Season…
Teachers are the Real Heros; shaping our children’s young minds so they can be the leaders of tomorrow!  So of course during the holiday season, we like to show our appreciation by giving them a gift for all their hard work during the school year, right?!  That being said, I’ve heard many teachers tell me that although they appreciate very much the thoughtful and kind gifts that they receive, they don’t actually NEED anything – some have expressed that rather than spending money on material things, that perhaps making a donation in their name to your favourite charity could reward them in a different way!
That being said: This year, would you consider (in lieu of a gift) making a donation in your childrens teachers names to PHA Canada?
The Berdan-Clan will making homemade cards with personal messages from the girls, and then we’ll add a bit of information on what Pulmonary Hypertension is and include a Periwinkle HOPE Ribbon pin.  I’d be happy to provide pins and information to anyone who would like to considering doing the same for their teachers.. Thanks for your consideration!
A very small background on why we’ve chosen PHA Canada as our charity of choice:
For about a year, Mia was experiencing breathing problems, at first they were nothing to be concerned about, but they seemed to be getting progressively worse, so of course we started trying to figure out why… In May of 2016 Doctor’s told us that Mia had Asthma ~ we were given puffers and sent on our way. But her breathing issues continued to get worse! She looked grey and sullen, she had no energy at all, then she started fainting, then having seizures; waking up in the middle of the nite with chest pains resulting in emergency visits to Sick Kids Hospital… Asthma?… No way!
In August 2016 Mia was diagnosed with PULMONARY HYPERTENSION: it is a progressive and fatal disease to which there is No Cure!
That link again:
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How’s Mia?

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I get asked all the time, “How is Mia?” Umm, well… you see; that’s a loaded question isn’t it? That is really really difficult to answer. Why? Because the Remodulin is doing its job SO well that the kid doesn’t look like she’s even sick; let alone like she’s dying.

So everything is back to normal right?  No! It isn’t!! It really really isn’t!!! Pulmonary Hypertension doesn’t have a cure. Period. So she’s not actually really all that great at all!! She just looks great! Sure, she feels better, that’s a relief… but absolutely nothing has changed for me. Nothing. I actually don’t feel any better at all! Why? Because I still have a daughter with a fatal disease. FATAL. With no Cure.
Donate here:

https://phacanada.akaraisin.com/pledgesforph/ebe21490d52d4b96934e0329afa4bb1a

Keeping up with the Jones’

Isn’t that an expression?

Sorry guys, but as much as I love you, I don’t reeeeeally wanna keep up with you on this one!

I was thinking back to the PHundraiser we had on November 4th; and the things that really stuck out to me. You know, the ones that surprised me.

Honestly, I don’t know why it surprised me so much that Jason Jones showed up; his sister died of this bullshit disease. At the time of the PHundraiser when he hugged me, I felt like he was giving me the biggest hug simply because he knew what I was going through and wanted to show support. Made sense, right? Except I hadn’t had time to stop and think about what I was actually going thru. At the time, I didn’t realize that what he was really giving me was what no one else could! Complete Understanding! He gave me the biggest, most genuine hug that I’ve received since finding out that my daughter has Pulmonary Hypertension – and trust me… I’ve had some amazing hugs!! But his hug was different; I believe he hugged me like that because he can honestly say that he knows what it feels like to watch someone he loves suffer and die from this horrendous disease. He hugged me so tightly because ultimately… he knows that unless a Cure is found, I’m gonna lose my daughter.

Now can I genuinely say; I’m so very sorry Jason. I didn’t know. If I had, I would have hugged you a helluva lot tighter when Candice died 💜

We are PHamily ✨

The strangest part, is that Thea, George, Mike and Mark Berdan grew up directly across the street from The Jones’. Thea took care of Jason after school for years.

Do you know how rare Pulmonary Hypertension is? Like, RIDiculously Rare! Mia is seriously a one-in-a-million shot. So the odds are that it is preeeetty much impossible that two families (who lived in such close proximity and were connected to each other looooong BEFORE they were connected to me – my sister Danielle (’74-’97) is the connecting link that brought us all know one another) would BOTH be affected by a disease as rare as PH?
#ABsoLUTELYImpossibleOdds.
I’ll just let you ponder that for a second

Jason and his girls Megan and Maddison.

I’ve always thought that Maddie (left) looks a lot like Candice and Mia looks a lot like Danielle. Jason and I share that in common, too.

Blood doesn’t make you PHamily


Yesterday, our PH awareness was putting Periwinkle Christmas Float in the Newmarket Santa Claus Parade. Yay us!!! Except that we HATE parades! Seriously, can’t stand any part of them; I hate watching them, almost as much as I don’t like being in them. The ONLY reason we were in it, was so we could pass out some information about Pulmonary Hypertension to the community we live in, figuring if we could make even one person #PHaware, then we’d done our job.

So I put it out there, but only to the people who I thought might join us, and I have to say… I was surprised by some who didn’t – but I believe that some of them would have if they didn’t have a previous engagement, or they weren’t sick. Others showed their support as they cheered us on from the crowd while freezing underneath their umbrellas. And I was surprised by some who did join us!! VERY pleasantly surprised I might add! AND, if you can believe it… strangely enough, not a single member of our blood relatives were walking with us this time… they were ALL unable to come. As you know, that NEVER happens… Like, Ev-er!

Yesterday, I truly knew that my PHamily had Grown! And it warms my heart and just confirms what I’ve always known; my PHamily ALWAYS shows up, Rain or Shine ~ and this time it was Pouring Rain. Do any of them actually have Pulmonary Hypertension?! Not a single one of ’em. But they love us so much and we are so important to them, that they didn’t just want to be there, it’s more like they needed to be there! 
I feel like we kicked a little bit more of PH’s Ass yesterday… Am I Right? ‘Cause instead of choosing to stay home in our comfort zones all cozy and warm ~ we made a decision;  We joined together and actually DANCED in the Rain as a PHamily! I love you guys!! 
Happy girl who has an unwaivering supportive PHamily! 

Mary Ann, Wayne, Philippa, Sienna and Linc

Michelle (me) Louise

Lora and Melody

Ryder, Ava, Lyric, Bella, Ever and Ella

Mia and Jenna

Brendan, Lois, Wayne and Calvin

Mia and her daddy, Mike. 

This is love, this is PHamily ✨
We missed Allie, so glad she’s home. 

#ThankYou

#BeBraveAndSparkle ✨ 

#PeriwinkleArmy