Tag Archives: PHaware

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

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

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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 ✨