Super Heros in Action 

I went to an assembly today! Yes I did! And what a very cool assembly it was… nooothing at all like the old – school assembly’s that we endured whilst in public school (🤐😴)!! N-no, this assembly was quite a different – not only was the LAST assembly of this school year — but the energy in the room was bouncing off the charts!! Why?!? Well now I’m not *positive* but I think the energy level miiiiiight have been ’cause these kids KNEW that some of their teachers AND their principal were gonna take a #PHpie in the face & they could-not-wait to witness it!! He he he!! Ummm… I can’t help but feel ‘somewhat’ (completely) responsible for that… 😬hehe whooops 🙃oh well… we’re gonna chock that one up so a #SorryNotSorry scenario aaaaaand then I’m not touching right now. K? 😘 AaaaanYwaY… SoOoOo Yes, you can imagine the atmosphere in the gym; It a was a little loud & the energy was definitely highly contagious! What a wonderful and encouraging sound. 

So why am I at an assembly? My job was to simply tell the Crossland Faculty that they literally Rock my World!! Yes, *I* got the honour of telling them that they ARE the absolutely best & I got to thank the them for being so Friggin’ Ah-maze-ing!!!! Right? All of them, each member of the Crossland Team are incredibly outstanding!!…. buuuuut I wanna call out one Team Member in Particular: Laurie Thomas. This woman is a machine & everything she does, she does so with a deep routed JOY & that Joy literally Ooozes out of her! – Laurie exemplifies what having the heart of a Super Hero looks like … and she shares it so lovingly with all of us!! Seriously, I haven’t met many like Ms. Thomas And SO many at Crossland. Thank you Mr. Flynn!! You & your team of Crossland faculty are the the most self-less, generous, wonderfully kind bunch of CrAZY people I’ve met … thank you for being your PHantasticly-AWEsome selves. Each of you have done your part in keeping our Mia safe and healthy this school year – But let’s face it… you know you gotta be a particular kind of CrAzY to jump on that kind Train, but you did… and Thank you!!!! There were many, MANY days I would have lost it if it weren’t for you guys xo

So you can imagine with this bunch, there was a lot of energy in the room was alive!! And so I’ll be quick… cause you’ll want watch this Video!! 
As The Berdan-Clan #PHamily… Thank you! ALL of YOU from the Faculty, to the Students & the Families from Crossland Public School… The Berdan-Clan have felt your Love & Positive Vibes. Thank you, each one of you, for bringing your loonies… & making a difference!! *Raises Hand* Oooo oo oo And check it OUT…!! Just like every good afternoon school special should; WE Learned Something Today!! Here’s our lesson: **One single Loonie may not add up to much, but when all our Loonies come together All those single Loonies really do make a Big difference!! A Huge Difference!! $1000.00 worth of Difference!! To the Pulmonary Hypertension Association of Canada; It means education for more people! It’s a HUGE deal – it could save lives! You see, Sometimes Super Heros don’t wear capes…. it just so happens, that in this case they kiiiiinda do 🌟Thank you ALL so incredibly much xo.



 #SuperHeroes

#FearThePieForPH

#PHpie 

#PHaware ​

‘Our Life in a NutShell’…

Please note I started writing this Blog on Tues. May 23rd. The date today is Sunday June 18th…. ya. Time flies when you’re having fun…  

‘Cause Baby You’re a FIREWORK!💥

Yup, We set off Fireworks… aaaaand we did so on the Monday night of the busiest Long weekend I’ve ever had! It was excellent & I Loved Every Minute of it! Eeeeven tho I turned 40!! 😱 It was the best birthday I’ve ever had. 

Aaaaaanyway… 

The point is that my #PHamily worked together to fill me up with so much Love & Support for my 40th Birthday, that I’m not even worried about this Cardio-Cath anymore. At the Moment, It’s Scheduled for *Thursday May 25th* tho that means  next to nothing as things can change in a blink of an eye & without much notice ⛈ Haha

So why the Monday of the long weekend? Because you only LIVE once and life IS too Short. Aaaaand  We literally never know what this thing called l Life is gonna throw at’cha! We have to Live in the Now!! We choose to do the things that bring us closer together as a #PHamily – & as I’ve mentioned: ‘Blood Doesn’t Make You #PHamily’ ~ Being there with Love & Support does. Thank You for always being there & having our back, guys… You have no idea what an out of the blue text can do 💥 Its kinda like a Firework in a dreary sky… like somebody is *Always* there. 

Thank you – ThAnK YoU – THANK-You ARE our people XO

Here’s a snippet of our PHamily Fireworks…​

Oh! And how did that Cardio-Cath go?! Absolutely Swimmingly! It came EARLY (Wed. May 24)  Aaaaaaand There were so many people offering a Ton of Prayers, Thoughts & Good Vibes on our behalf Aaaaand Realistically – I’m just glad Mia woke up! It feels like  that the dark looming cloud that has been hovering over our family since September has finally been released!! It’s #EuPHoric! 

Take a look at​ some pics… ​What’s next for th Berdan-Clan? I dunno… but I’m excited to find out! #PHightModeON. #KeepDASparkle

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Damn Site Changes 😡

Dealing with unpredictability has never been my strong suit – it’s too much like asking me to have Patience. Ask anyone who knows me… Patience is a Virtue that I simply Do Not possess 😉 I have to admit, I reeeeeally do like to know what I’m up against, and then come up with a plan aaaand then I wanted it all done and solved like, Yesterday! Even tho I may have only thought of it today… Make sense? I hope so 😬 Anyway, so having a kid with PH is a HUGE adjustment to My Life – haha. Yes, I know … of course it is for Mia too, but hey, please indulge me for a sec; this time we’re talking about me! 😘

Before I went back to school to become a Medical Aesthetician, I was the Activity Director in a Retirement Residence. Living by calendars, schedules and the clock was my 9-5 and Time was of the utmost importance – next to having a solid plan. Organizing people’s spare time and turning it into FUN … it’s just what I did! I often had Activities & Special Events planned well over a year in advance – What? It’s the only way I made sure that our Residents got exactly what I wanted – The Best! Of course I am able to Fly by the Seat of my Pants as well, and I am quite good at it… but living that way ALL the time? No Thanks – it’s too exhausting!

Anyway… back to the topic at hand. These Damn Site Changes take my kid from being a vibrant happy 10 year old who *almost* loves her life; to a child who is in so much pain it hurts to do ANYthing. Seriously. It hurts to move, and getting comfortable enough to actually get a the restful sleep she so desperately needs… is sometimes near impossible. How long does she feel this way? It’s unpredictable 😩 It’s been as long as 7 days and as short as 1. How long does a Site Last before it needs to be changed again? That’s unpredictable, too 😠.  It’s been as long as 5 weeks and as short as 2 days. But Regardless… it’s never long enough 💔 and My Life literally stops dead it it’s tracks for up to a week with very little to ZERO advanced notice. How am I supposed to plan ANYthing when living life as a PHamily is so Unpredictable *Sigh* 

I’m always looking for practical tips other PHers have had success with while using Remodulin via Sub Q. Tips for pain control, Site longevity, Coping Strategies for living with this horrid disease. Anything! I’m desperate to help comfort her any way I can. I feel so helpless. This one has been particularly hard. I wish she wasn’t allergic to Tagaderm and we could go back to the Cleo Sites. 😔

I ❤️ being a Mom! 

… Moooost of the Time 😉

There’s always been this great debate, on Mother’s Day. It should be for the mother with the young kids, right? She should get to do whatever it is that she wants. It’s Mother’s Day. That happens what, never times a year? Even on Mother’s Day. Because let’s face it, We’re mothers. Period. I came across this ad by Sick Kids. It’s pretty powerful, and it made me cry. It made me cry because I have deep empathy for the women in this video because I have found myself in every single one of those situations. Pounding on my steering wheel in anger, crying in the shower (that one’s my favourite) Telling myself: I can do this. I can do this! Just so I can put a smile on my face and be there for my kids. Because I’m a mom.

I’m a mom. I’m not Super Mom, I’m not Wonder Woman… I’m not any better or even much different from any other mother who is trying her ass off to get it right, but feels like she’s failing… I’m still trying to raise self respecting kids who don’t expect everything to be handed to them on a silver platter just because one of them is sick and/or because she’s already lost so much! Every single mom out there knows what it’s like to have the secret thought that our kids are being a pint-sized assholes.  My kids are no different. It just so happens that one of them is also sick. I’m just like everyone else… trying to figure it out as I go along. Nobody ever told us what to expect… there’s is no manual… I wish the comparing would stop… ’cause trust me, we’ve all got shit. I love learning as I get older that we’re not in competition – and none of us have it all together! Aaaanyway… I digress… 

How do you take a day off from being a mom? You really can’t. So the debate is: Do you spend your “Day off” with your kid’s, or do you send them away and take a day off for you!? Well, that’s up to you… Personally, I do both. I want to see my mom, my kids want to see me. And my mother-in-law wants to see my husband. And as it should be! Moms don’t stop being moms just because their kids grow up and have kids, so we do all that and everyone is happy! So I say, do whatever the hell you want! Only you know you need to recharge and keep MOM-ing! Enjoy! 

Happy Mothers Day to Any Mom Anywhere who is trying her Ass to get it Right – EveryDay! 

At the Newmarket Fair… they had a blast… but holy crap that was exhausting! We always try Brave, but she always has to listen to her body. So… you know the ride where gravity pushes your back against the cage so you don’t fall off as the circle spins ’round & ’round? (I know, excellent description right!) I love that ride but the pressure on the lungs is a lot! Buuuut she was determined to try it 😬 So it’s just the four of us going on the ride, and I whispered to the operator: ‘If I ask you to stop this ride please stop this ride, OK?’ And he looked at me sideways and I said: ‘she’s got a lung condition and she’s trying to be brave’ He nodded in empathy and we got on. The ride started, I have my hand on her chest as it starts to spin, as the ride goes faster so does her heart. It feels like it’s thumping out of her chest!! And she says to me: ‘Mommy I need it to stop!” OK! “STOoOoOoOoP” I yell and Mike looks at me from across the ride and he motions: ‘we’re done?’ I nod: yes and he yells: “Stop the Ride! – Stop the Ride!! It slows down and eventually stops… She and I got off the ride Mike and Allie stayed on. We enjoyed listening to her sister giggle and her dad laugh while they enjoyed the ride, I know her heart was breaking inside; because mine was 💔 But! She told me she had the time of her life at the fair yesterday. She and Allie both did! And they both tried things that they didn’t think they could do.. they were Brave – Together! 🍻 Me? I went to bed at 5:30pm surprised I didn’t have a heart stack myself yesterday. Having a PHamily is exhausting. But it’s also so much fun.Allie’s 8th Mermaid Birthday Party

Motherhood: I love it! (Most of the Time!) 😉

Calling all GLOBAL Feel-Better-Fairies 🦋

I need your help – again… 😬 I was thinking (a Dangerous Pastime, I know)… we’re hoping for World Awareness for all 25 million PH patients worldwide, right? Yes, yes… I know, I know… Perhaps we are already #PHaware, and don’t have a single cent that we’re able donate right now (that’s totally ok, me neither) and we’re tired of hearing PH facts or listening to me cry (me too!) – I get it, trust me, Quite Frankly I’m tired of the whole damn thing, too! But… I can’t give up, because my kid’s life is too important to me… So here’s what I’m thinking: I’m thinking… PH is STILL a Rare, Progressive, Invisible, & pretty much Unheard of disease. What if each of us personally shared Mia’s story along with her YouTube link introducing the #PHpie Challenge … you know a real 1-1 conversation or FB messenger or whatever our favourite way to effectively communicate is, and What if we directly contacted at least 1 friend who is outside of our own close circle… and maybe even outside of our comfort zone… maaaaybe even 2 friends, one of whom lives in an entirely different country!! What if we all personally asked a few of our friends to help us raise awareness for Pulmonary Hypertension. Maybe if we share what the heck this PH disease is with someone who has not already been saturated with more PH info. than they can shake a stick at and doesn’t want to hear another single word about it! … Maybe… just maybe they might just want to take the challenge themselves or make their own #FearThePieForPH or #PHpie Challenge video, and maybe they could ask people to donate to the Pulmonary Hypertension Association of their own country. Maybe it just might save a life! Maybe that life might belong to a person who knows nothing of PH yet have been wondering what the heck is going on with their own health, or are trying desperately to figure out why a loved ones health seems to be deteriorating so quickly. The journey to discover one has PH is HARD and stressful, lonely, confusing at is scary as hell. What if just maybe Mia’s story can bring awareness or perhaps even a tiny bit of comfort to a person who finds themselves without answers – and might even get someone who is unknowingly suffering with PH a proper diagnosis and on a treatment that can slow the rapid progression of this disease – cause without treatment, a person with PH will live less than 3 years! Often PH patients have been thru so many Doctors who don’t even know what Pulmonary Hypertension is, let alone how to look for it. I don’t want anyone to suffer, it’s horrible. No One should Struggle to Breathe.

Am I off my Rocker, or could this work? What’cha think? Can we all take a #PHpie for the Team Mia and make our PHamily even bigger!? I wanna thank you in advance for any awareness you may bring to another on May 5th (Go Purple!) and for all the awareness you have already spread on behalf of Mia and The Berdan-Clan. Your support is precious, I’ve been talking to a lot of  PHmoms who would give their left arm for the support system that we have! I hate to ask… But do we have it in us to do it again?


Here’s the Link to Mia’s You Tube channel introducing the #FearThePieForPH Challenge. (Pssst: it would make her day if you’d also subscribe and like her page, too!!)

I’ll even try to make it as easy as possible to share Mia’s story with friends… The following is our journey as I tried to explain it to new PH mom who asked me to share Mia’s story. Her 5 year old daughter was diagnosed with IPAH 2 weeks ago:

OK here’s our story: Mia has never really been a sportsy person, she’s more of an artsy person. She’s a singer, dancer, actress – a very creative individual. So when she started losing interest in those things, and when she struggled with her breathing to the point where it was difficult to walk across the stage (At competition) and belt out out her lines as she played ‘Molly’ in her theatre groups production of ‘Annie’, we started to worry. She always seemed to need to take so many breaks while walking, I thought she was being lazy!! All she ever wanted to do was be inside her iPod ~ as if shutting out the world. She didn’t want to do anything… and she looked greyish, thin and kinda unhealthy in general. I describe it as Mia was losing the Sparkle that made Mia who she is. I asked my family GP (#1) for a referral to a Pediatrician (#2); who sent us to the Allergy & Asthma clinic (#3)  who diagnosed her with Asthma, gave her puffers and sent us along our merry way. That was May 2016. By July, she could no longer walk up the stairs, she would faint for no reason, she passed out ontop of me in Chapters bookstore. She passed out and knocked her noggin off the car in our driveway. She started seizing, and waking up with chest pains in the middle of the night. Asthma? Ummmm no! I don’t think so. I called the asthma clinic at our hospital, explained what was happening and I was told they that the doctor wasn’t available. I said “Good! She doesn’t have asthma! I don’t want to see the asthma doctor!” So I asked if I was going to be coming in through emerge in the middle of the night when my daughter wakes up seizing again, or they could give us an appointment now and we’ll see whoever is on shift this afternoon. What time was our appointment? 2:30!  Thankfully we didn’t wait long and after listening to our story, Dr. Jasvinder Dhillon (#4)  immediately had her do her best to across the length of the room.  She was able to do this for all of 3 minutes before she couldn’t anymore and then he put a stethoscope to her chest. Next thing I know, she’s in x-ray and she’s having an EKG and they’re ordering an urgent echocardiogram for the next day. The X-ray showed she had an unexplained shadow on her lung.  The prescription pad for that echocardiogram said: Rule out Pulmonary Hypertension. What the heck is Pulmonary Hypertension? The moment I got home from seeing Dr, Dhillon ~ I googled it. All I saw were the words: “Heart/Lung transplant, Fatal and No Cure”.  That was enough for me, I turned off the computer and cried uncontrollably for hours – I tried not to freak out or jump to any conclusions all while trying desperately to convince myself that there was no way that our Mia had PH… NO WAY! We went for that echocardiogram the next day, and Dr. Singla (#5) confirmed our worst fear: He suspects Pulmonary Hypertension. (What?!? NOOOoOoOOo!! No no no no NO!! This can NOT happen to us, we’ve had enough in his life!)  We referred to Sick Kids Hospital and she endured what felt like 1 trillion tests – the poor kid was put through hell, literally! Poked and prodded at for hours on end for 2 days in a row. She wasn’t able to have the Right Heart Catheterization (the golden standard test to definitively confirm PH. All PH patients have at leasy one to get an accurate pressure reading to prescribe the meds) Buuuuut because with her PH came a Central Sleep Apnea – (isn’t that a fun little extra added bonus to an already horrible diagnosis – YAY!! That’s just faaaaaantastic!) We were told that if she was given the Right Heart Catheterization, there was a 2% chance that she would make it off the table alive. So Dr. Humpl (#6) took a shot in the ‘grey’ and put her on a med called ‘Remodulin‘ via Sub Q pump. I’m happy to say that NOW Mia’s  PH symptoms are stable, and thanks to the Remodulin… that central sleep apnea is gone! Hooray! Good News!

So how did all that happen? … And when?  Because after Mia was born, the Nurses checked her over thoroughly and we were told that a pinhole and a small murmur were detected in her heart. She was followed by a cardiologist every few years from 3 days old until 7 years old – she was declared as having a normal healthy heart on October 24, 2013! Mia developing PH so quickly and out of nowhere is about as likely as my sister being killed in a car accident on a deserted highway! And that happened too, so… idk wtf is going on – but I do know that PH is progressive, it is life threatening and PH patients all over the world a Cure. Would you help us?

In the meantime, here are some shots of some of my PHriends and PHamily taking the #PHpie challenge, in addition to a few pictures of how we engaged the help and support of the ALWAYS AWESOME Sick Kids Staff.  Enjoy!

Inhale… (updated May 1&23)

#LatestUpdate: 

I had to make sure you knew this: #IAmReady for this #RightHeartCath AND #TheVibeIsRight. Talking to all of my Peeeple for this whooooole weekend, has helped me write this (INCLUDING you!): 

**Sick Kids Called today about 12 hours ago!!**

😱

🌸Thank you!!! 💞

So I say ~ ‘Rescheduled Again?’ Bring it!! That’s okay… she’s healthy this-time it’s rescheduled with #LESSTimeToWorry !! Buuuut with Enough Time to call all the #PrayerWarriors &/or those with #TimeToGetTogether. In other words: We’re Calling all OUR #PHamily who’s *Always* there for us through ☔️& 🌈= 💞it’s #Priceless. 

Thank You  ~ The Berdan-Clan 🍒💣

PS. Love you Guys!! Thank you for all you Love & Support & being the other 1/2 of my Brain! Ooooof course I also say that to MY mum all the time. 🤓#ItTakesAVillage, Right? Also: Miss Beans will not be in school tomorrow either…. She is ‘A Person’ & ‘She is every bit a Part of this #PHamily, as well. And she outright refused to stay home and go to school! And Good for her, right? She is ALWAYS there for her Sister. I’m sure she wouldn’t expect to be anywhere else. I Love that kid! She’s a Real Sweetheart – yet a BullDog at the same time… kiiiiiinda like her parents?🤔 : 😝🤗😈😳🤣 aaaaaand maybe a few other #PHamily members I know 😘 xo

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May 1: Here’s the latest update: The week before the procedure, the Berdan household was desperately trying to keep sickness at bay – which wasn’t easy because there were many in Mia’s class who had come down with the gastric flu. Well, despite our efforts, Mia caught it and directly followed it with a cold, including a wee cough. I called the Cath-Clinic just to make sure we should still come. They suggested we should pack to stay the nite, and come by 8:30am, she would be assessed by the internist and Anaesthesiologist to see if we were all clear to proceed. Needless to say my nerves and anxiety made me feel quite sick leading up to the Cath, aaaaand I knew they’d stay that way until this stupid Cardio-Cath was finally done and she wakes up in recovery all safe and sound. SoOooOoo we arrived at Sick Kids and Mia was seen by a nurse, and a cardiac fellow and they said they thought she’d be good to go. Now that being said, they reiterated she could also still be sent home if the anesthesiologist isn’t comfortable. So still we waited. The internist came in and checked her out, then he went to confer with the Anaesthesiologist who said: ‘It’s better to do it another day when there’s no viral infection present at all.” So we got rescheduled for MAY 25th and went home. Basically the long and the short of it is that they COULD have done it with a slight residual viral infection left over, but what’s the point for two reasons: 1. Always the Risk with an the Anaesthetic  2. And They wouldn’t get the accurate pressure readings that they’re hoping for. I know it’s for the best, and I’m happy they’re being cautious… I’d never risk putting Mia in danger on purpose – I just want it to be all done. May 25 it is. 

Original Post:
 …then Exhale… Repeat. 

Breathing… It’s something that most of us do automatically with very little (if any) thought. Totally taking for granted that our next life sustaining breath of air will just be there; ready to be inhaled. But what if it wasn’t? How would that feel? I can imagine it might feel a bit like drowning, including the frantic panic of not having any air to breathe. No thanks, that’s friggin’ scary. I imagine that’s what untreated PH might feel like, or when a PHer gets sick… 

These are the things I think about when my world is silent. I don’t much like silence, nor letting my mind wander… But today I sat in my backyard in the sunshine. Aaaaand strangely I found myself alone… How Odd, yet completely lovely… and so here I sit, Alone. Just soaking up the warmth of the sun, drinking coffee and thinking… 

Phew ~ It’s Spring! 🌼

Wow. It’s been a while, huh? Sorry about that. I’ve been hibernating all winter. Yes… Literally hibernating. I’ve gone nowhere, and I’ve seen practically no one: Admitedly by choice 😔 Please don’t think you’re the only one who hasn’t heard from or seen me, you’re not. Apparently this adjustment to life as a PHamily is gonna be a helluva lot harder than I thought it would be… Holy Crap, most times *I* find it hard to Breathe, let alone function… But here we are continuing to trudge thru; juuuust like we always do 🙃it’s coming along… just WaaAaaY more slowly than I’d like (and as we know; Patience has never been my strong suit 😉)
So what’s happened since I last updated this blog?

We believe we have figured out which of her many sterile thing-a-ma-bobber products were causing Mia’s skin to have such a reaction to her Site. Tagaderm. And it just so happens that the Sites we were using contain that adhesive… SoOoOo we switched Site Brands and she’s not even as half as itchy as she was: Win! *Happy Dance*  Doesn’t that look better? ⬇️Oh! And we’re really close to getting her waterproofed for the summer! Yay! 🎉 🤞🏻

Mia is scheduled for her Right Heart Catheterization on April 26. Am I worried about that? *insert blank stare here: 😳* Of course!! No parent I know wants to put their kid thru an invasive procedure. But I also feel strangely at peace with it ✌🏻 She’s certainly in much better shape than she was in September when they told us there was a 2% chance she’d make it thru. This time, I don’t doubt she’ll make it thru – Have you met Mia? She’s a Warrior, a PHighter with a such a funny positive attitude AND she has Kick-Ass attitude should the situation warrant it. So I guess yes I’m concerned, but no I’m not overly worried. Make sense? She’s not Done yet… and as long as I can do anything about it… She’ll Never Be Done. 💞

I found a Mom-PHriend!!! She’s AWEsome & Ah-maz-ing & We are so much alike! (Notice how I slipped myself a compliment there?!)  We have so much in common including: She is an Activity Director in a LTC facility and her daughter also has PH. Their PHamily has been PHighting for 4 years now 😔 I hate that they have been, but I’m glad that I found her. Best Part: She only  lives 2.5 hours away… Not bad! It’s nice to have someone who can actually say, ‘I’ve been there’. In fact, she’s often described & validated EXactly how I’m feeling without me so-much as telling her much… via text… that’s pretty amazing, AmIrite??

I contributed an article to the Spring edition of CONNECTIONS magazine. It’s ‘The Official Magazine of the PH Community’ … I’m guessing that should be out soon 😊

May 5th is #WorldPHday. So in addition to Everything going Purple for PH (I guess they figured it was easier than Periwinkle?) we’ve been racking our brains to try and come up with an idea to make the whole world more #PHaware. No pressure there, right? 🤣 I believe we may have found something good tho! So stay tuned… we’re working on the ‘script’, then Mia wants to release it on her own YouTube channel. What a kid. She impresses me everyday; both she and her sister… they make a really good team. #MoeFlo&TheBean

Waxing Wednesdays are starting this week at the Spa http://www.serenitynowspa.ca — More services will be added soon, but for now… It’s time to ‘De-Furr’ for Spring! 🌵🌸

So now We’ve also been figuring out what each of us need for self-care.  Mike learned what he needs a long time ago and I’m working on allowing myself what I need without feeling guilty for accepting help. Now Mia and Allie are working on what their needs are. Allie requires company and attention ALL the time and Often Mia wants to be alone (you can imagine how that goes down, right)

Other times Mia wants to get lost in music.ly or YouTube. This time; she needed a manicure, a trip to Rexall and her Mama 💞

I’ve seriously never seen such an instant elevation in mood than when I told her she could have the Katy Perry mascara. Now it’s definitely confirmed: She is SO my kid!

Here’s something Huge… Mike and I decided that Mia should be under chiropractic care… so she is now under the care of  Dr. Josh at Crossroads Chiro on Eagle street, in Newmarket. Turns out her spine wasn’t looking so good, we figured there can’t be anything wrong with opening up all the pathways so the info can flo from the brain to everywhere it’s supposed to go, right? And this is the gentlest chiropractic care I have ever seen. We’re greatful to have found him and his wonderful staff  😉 xo

 

So that’s it, This is what the Berdan-Clan have been up to lately… we’re just figuring stuff out, living life and doing the best we can to be as ‘normal’ as humanly possible… but then again, we tend to think that Normal is just simply overrated 😘Oh!! And the most important thing!! Today we celebrate the most PHabulous Man on the Planet! Happy Birthday, Mikey! Thank you for always being the calm in the middle of the emotional shit-storm of ALL of your girls 😬 And for always figuring out a way to keep our heads above water; no matter what we’re facing. Just when I think it’s impossible to love you even the tiiiiiniest bit more, I’m proven wrong. You are my perfect partner – I’m SoOoOoOo  Luckyyyyy 💞💫 (Also Doesn’t hurt that you’re Hott!) xo

#PHightMode – On?

When Mia was diagnosed with PH this summer, we came out of the gate PHighting – making sure everyone in our world knew what Pulmonary Hypertension was and taking every opportunity to raise both awareness & funds…

Then Reality Struck. Aaaaand I pretty much stopped communicating with just about EVERYone (so no, it’s not just you 😉) I’m in hibernation mode. Yup. Seems I’m in a funk that I just can’t seem to shake.

I know I need to get back into #PHightMode – & I need to do it sooner rather than later… It’s been a looooong cold winter & although Mia’s condition IS stable, more often than not she feels pretty good & some really positive things have been happening lately – so what’s my problem… I should be happy, right?  Yes, of course I celebrate every victory along the way, but the problem is: Stable is not good enough for me; Stable isn’t the end goal… The Cure Is!

Let me share with you a few pages from my journal… this is me trying to build myself up for the PHight…

Mia was our 5th pregnancy & our 1st child.


I’ve been wanting to post a blog like this for a few weeks now, but I reeeally wanted to wait until I felt like I was actually IN #PHightMode, perhaps even with some sort of ability to motivate people into joining the PHight – But I’m still not & I don’t know how.
I am trying, I just don’t actually know what to do. I don’t seem to have the energy or the drive; that is VERY unusual for me & I can’t figure out why. But I can tell you this: It’s Frustrating as Hell. The only way I can seem to brighten up is if I put myself in denial of my reality & pretend that Mia doesn’t have a progressively fatal condition that doesn’t have a Cure. And yes of course I fully understand that I don’t know what the future holds & there could be many medical advances in her life time… but if anyone can offer any ideas on how NOT to think about my baby having that kind of diagnosis.. please, help a Sista out.

She’ll go down in Hissstoryyy..

What a busy day!

It was Clinic day at Sick Kids… this happens every 3 months or so… our first appt. was at 8:00am and we got home at 4:30pm – we are zonked! But I didn’t want to leave you hanging (in case you were wondering what happened)

Firstly: The Bean’s Echo came out Normal. Yay!

AND today came with more good news… buuuut before that…

On the not-so-good side, she had a lower 6 minute walk test score, because there was more stress on her heart, as shown thru the Ekg she wore while walking. She also got quite short of breath and had slight chest pains during her 6mw test. She had to slow down quite considerably. This was concerning… so, she was been fitted with Holter Monitor and she’ll wear that for 24 hours & record her daily activities if ever she feels PH symptoms. Her friends should have fun with this at school 😉 (I personally think it may have more to do with lack of sleep, over excursion, and poor diet choices. Whilst away – still love the word whilst)

On the more Positive side: Her pressure in her lungs appear to be lower as shown by the echocardiogram – This is a good!! This means the Remodulin is doing its job, they’re even going to up her dosage juuuust a bit to give her a little boost; ’cause of course they still don’t know the exact pressures in her lungs, so they will need to do the Cardio-Cath in a few months. Until then, we carefully increase the Remodulin.
Remember the sleep clinic on January 31… the one a lot of you joined us via FB Live? Well the results from that have shown a HUGE improvement!! And it also comes with the best news ever!! Mia gets to ditch the Oxygen at nite!! Yay!!
In fact: The change in her sleeping is so HUGE it’s NEVER been seen before – (remember when she was waking up clutching her chest in pain and seizing; causing her to stop breathing?) That’s gone!! Like Totally Gone. The Remodulin fixed that, too. Seriously… They are PHlabbergasted! They’ve never seen this result on anyone else, any age, anywhere – ever! Of course they are a team of Respirologists, so they’ve probably never heard of Remodulin. So now our little Miss Mia will be a Case Study in a Medical Journal & Medical students will learn from her experiences.

That’s Pretty Cool, huh?
Of course Mia ALWAYS needs a Selfie! Why should Dr. Humpl escape the pleasure 😉

Mia, Dr. Humpl, Allie & Janette all with their Disney World Lollipops

Dr. Saadoun Bin-Hasan (Respirologist Fellow): He had not seen Mia since August and was WOWED by how good she looked! She’s gained 11lbs since the summer and looks so much better – those damn invisible Illnesses; they’ll trick you every time! 😉

 Dr.Bin-Hasan is the man who will be writing Mia’s Case Report.

Priorities Require Tough Decisions : Updated April 10/17

Update: Serenity Now would love to introduce: ‘Waxing Wednesdays!’ (with a portion of profits benefiting Pulmonary Hypertension Association of Canada) Text me if you need to be ‘de-furred’ 🙀 9057171613

🙈

Original Post: So if I am to be completely honest about my feelings, and I’ve been trying to be… I feel at this moment in time that I need to be quite inwardly focussed. It’s only been 6 months since I found out that my baby has a progressive lung disorder that is affecting her heart. I have to try to figure out how to wrap my head around that it IS terminal and right now there is no cure.  That’s a helluva blow; certainly one I never expected that we were ever going to have to take… yet here we are.

The numb stage has ended and now we’re left to figure out how we are going to live our life in a whole new and completely different way.  It’s not going to be a ‘New Normal’ – because when it comes to PH there IS no such thing as ‘Normal’.  I use to be able to multi-task like a champion; now I can barely think and I’m on call 24 hours a day… when am I supposed to figure this out?

With that being said, I think gonna stop working for a little while. I’m not worried that I’m irreplaceable,  people can have their fingers and toes done anywhere. However I also know that people come to ‘Serenity Now! Spa’ because they enjoy my company and I love that, I really really do… and this is why this is decision is so hard. I just don’t have the energy most of the time, I feel like I’m already running on an empty tank. And right now, with whatever energy that I do have, I have to be able to focus on what is most important: Mia and Allie and Mike. And me. I have to take care of me.

My job takes more energy than you’d probably think. I mean it certainly isn’t a difficult job, but it can be quite emotionally taxing. It’s not always easy to be happy, talkative and personable all day, while I listen and talk with my clients about their lives, trying to rack my brain to help them figure it out… I’ve always loved talking to all kinds of different people and learning  from their experiences. I refuse to give my clients less than what they’ve come to expect from me at Serenity Now! I care too much about the business and relationships that I have built because of it. My clients are more than just clients to me. We share our lives.  And besides – I try not to do anything 1/2 assed. It’s not going to be a forever thing, I promise… just until I have had a singular focus for long enough to figure out what the Berdan-Clan needs to survive this diagnosis as a family.

Sadly I know that I’m taking a risk of losing my whole client base and essentially losing my entire business, but as a family, we need to be able to move forward, and right now the only thing I have to talk about is Pulmonary Hypertension or Mia’s pain, or hospital visits and Doctor speak – and I don’t have it in me to talk about it and explain it again and again and again… I can’t live in that headspace while trying to survive a life that I didn’t ask for, that is not only really really hard, but it makes me experience my initial heart break too many times and too often. I’m really not in an emotional state where I can do that right now, I just need time to think, to figure shit out and do try some trouble shooting. Aaaaaand then I’ll be back ✨