So, how’d it go yesterday? 😕

July 11th 2018

We were at Sick Kids for 10 hours yesterday. Mostly in waiting room after waiting room; until we reached the final room. You know that room where you get the results of all the testing. Yesterday it was that room where her doctor told us her numbers weren’t as good as last time and that her pressures are UP. Fuck. Yes, I hate that room. I’m searching my brain as I feel genuinely confused. I’m sorry, what? That can’t be… she’s doing so well. See? Even I fall into the, ‘She-looks-so-good-she-can’t-be-sick’ trap sometimes. Because she does!! She looks SO good! There are times when I even feel somewhat relaxed because we are at a point where she’s stable; a point where things almost feel normal again. Aaaaaand just as we’re getting into routine… a day like yesterday happens and those feelings of being somewhat relaxed and hopeful are completely ripped away. When a day like yesterday happens, it’s like I’m reliving all of it ~ all over again. The truth is, I don’t know if I’m strong enough for this. Mostly I feel like I’ve been hit by a Mack Truck and now I have to put all my broken pieces back together. Again. It’s a constant rollercoaster of emotions and inside I’m screaming: ‘Stop this ride, I wanna get off!!’ So no! I really don’t know if I’m strong enough for this, in fact I’m sure I’m not. Luckily for me I’m not alone and although I may not be strong enough for this all-by-myself… I know that together WE are. If I’ve said it once, I’ve said it a thousand times over … Support Is Everything and while it’s still gonna suck – ‘cause it always will – it’s comforting to know my people have got my back. . . .

Now please excuse me while I try my best to go process all of this. I so need a vacation!!!

#SupportIsEverything

#PHsux

#BipolarSux

#iTen💥

#PHightModeON.

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Please Don’t mind my Bitchiness…

June 25/18

Warning: This is raw, unfiltered and a wee tad long. Buuut #SorryNotSorry that’s how long it took 😉

On Sunday I yelled an SOS via text to my people: “I’m sorry, I need to scream it somewhere safe: I AM SO FUCKING OVER FEELING THIS WAY! Yes I know, I know ‘I’ve come so far’ blah blah blah – I’m not saying I haven’t; I know that I have!! Infact I have worked really damn hard to get to this point… I’m just saying I am really sick of my broken brain and being betrayed by it. I FEEL SO DAMN UNCOMFORTABLE in my own skin, in my mind, in my emotions and my physical body … I can’t even stand to be around me. I want to love me. I’m tired of crying. I just want to sleep forever and wake up in 2015 when I was happy and life made sense”.

That’s not an easy message to receive let alone respond to. So I asked them if I could share snippets of what transpired that day. Why? ‘Cause maybe one day you’ll be the one to send the SOS or maybe you’ll be the one getting it. Either way I hope my experiences will help others understand how important it is to reach out when they need to – seriously… no one should have to face the hard shit alone, and someone who loves you doesn’t want you to, either. Trust me.

I woke up the next day and I sent this message: “Yesterday was a horrible day. And I’m sure that it all felt worse than it usually does because I have been doing so well lately that one could *almost* forget how horrible it all is. Almost. I get stuck between feeling sorry for myself and being so angry with myself for allowing it all to get to me! Aaaaaand of course that leads to feelings of being so completely pathetic and weak and useless and defeated. I’m really just angry at this point. Angry that any of this had to happen in the first place. I’m pissed that my daughter gets a horrendous disease and as if that isn’t hard enough – then a debilitating mental illness gets piled on top of it, making the PH stuff that much harder. It sucks to hate myself again, I thought having gone thru it in teenage and then again in 2012 that I was done. Why can’t I be done? Why can’t I just love and accept me? It’s hard to raise daughters to be strong and fierce and to love themselves; when I don’t feel that way about myself. I don’t feel like I have the tools to teach them anything. I’m just over it. I wish I could take a vacation from my life, from my thoughts, from my truths, from EVERYthing. Buuuuuut unfortunately that’s an impossibility … My thoughts come with me wherever I go and it feels kiiiiinda like a Mental Prison. Of course despite this I continue on ‘cause what choice do I really have? I’m just tired. It’s hard to be in fight mode every single damn day. I know that I am blessed in many other ways, trust me… I DO know that. Support helps, friends help and crying/talking it out kinda helps, too. I know I’d be way worse off without my village. I’m just tired. So so so tired. It just doesn’t stop.”

Mental Illness is hard! Sometimes despite my best efforts the continuous fight with my unrelenting brain and the untruths it keeps spewing gets to me… and after a while I start to believe it all eeeeven tho deep down I know it’s nothing but lies.

Today I did nothing but try to be kind to me and reset back to function mode. I have found that in attempting to do this I often have to block and compartmentalize … sometimes it works, and sometimes I wake up and have to do a cartridge change before my morning coffee, and then a surprise Site change before I go to bed. I can’t explain how heartbreaking it is to look into my child’s helpless tear filled eyes as she tells me that all she wanted was to enjoy the last few days of school with her friends. And of course there are always reminders – everywhere… even when all I wanna do is throw out the trash.

And just when I think I’m ready to give up completely this happens… I’m reminded what sheer grit and determination can do. My daughter is the personification of bravery (even tho she’d kill me for saying that), She shows resilience and perseverance at every turn – Mia doesn’t give up… Last nite at 10:45pm she had a Site change and despite the extreme pain she’ll have to endure; the pull of being with her friends won! She’s off to school. I can’t even begin to express how proud I am of her. If she can do it, so can I, right? Support Systems are everything.

3 things I’m thankful for today:

• My family (blood & chosen)

• Friends who don’t let me shut them out (for too long)

• I love to write – it has saved me so many times .

Clouded Memories

Pictures. Pictures tell the stories of our lives by capturing a moment in time and freezing it for all eternity. Usually we take pictures during life’s best moments… the big moments like vacations, a new baby, winning an award or a wedding! And the smaller moments like inside jokes, funny antics or simply our sleeping child: but regardless of whether they’re big or small, they are the moments we want to freeze and remember for the rest of our life. Take a look at this…

When I look at these pictures I see 3 things: #1. A really great moment, DEFinitely an exciting moment, in fact this is one of the better moments I’ve experienced in my life so far … it’s definitely a Proud-Mom moment. I also see: #2. My Mia in her element doing what she loves, excelling at it & being recognized for her natural talent and all the hard work she put in to get to this moment. #3. I was blissfully unaware that 3 months after this picture was taken our lives would change forever.

See, that’s my first response when I look at any picture: Is it pre-diagnosis or post-diagnosis? It sux because I wish that weren’t the case and sadly I can’t help it – that’s how I look at all my pictures, that is how I see my life. Before & After. Every. Single. Time.

And then there’s this picture:

I really like this one, it’s a great picture; it really is beautiful. The problem is that every time I see it I can’t help but be reminded that it was only a few mere hours after this was taken that our baby was diagnosed with a terminal illness. Nope, It doesn’t get any worse than that.

Unless a cure found… I’ll never get to start the next stage of how I see my pictures. I wanna be able to look at my pictures like this: #1. Those ‘Proud-Mom’ moments, the ‘I Love my Kid’ moments, the ‘She’s a Huge Goofball’ moments…but most importantly I want the #2. Post-Cure moments. I want to be able to look back at my pictures and say: ‘Remember when Mia had Pulmonary Hypertension’?. I can’t wait for those moments. Yes, I wanna have albums & albums full of pictures of those moments. Big Fat Albums.

Until then… I’ll hold my memories dear – sometimes I’ll laugh, sometimes I’ll cry but I’ll always know that there was love.

Bring on the Cure.

Answers.

Almost a year. It’s been almost a year since I’ve written a blog. Why? I mean what the heck was I supposed to write about that anyone would want to read? It really has been a cluster-fuck of a year. I think I may have to say that this has been the hardest damn year of my whole entire life and trust me when I tell you; I’ve been thru a lot. Yes, in my 41 years on this planet I’ve been thru hell more times than I’d say was my fair share. I’m not sitting here trying to pretend that I haven’t had some amazing moments in my life, I have! A whole helluva lot of them! For the most part it’s been more than just good, I love my life! I really have no reason to complain. But then there are also the times when everything goes to shit – well, that has been this past year. My whole-Being was being called into question: How did this happen? How far have I fallen? How did I get here? How do I get out? Am I strong enough to do this? What choice do I have? I can’t give up… I won’t. #Perseverance

A mental illness really fucks with your head (pardon the pun) seriously, it tells the most horrific lies, and makes you believe them. How do I know what’s true and what isn’t? How do I know if what I’m feeling is legit or if it’s just the Bipolar? How do I know if I’m being irrational? How do I slow down this nightmare? How do they expect me to live thru a parent’s worst nightmare & be ok with it? I mean WTF!! Would they? I’m 100% sure the answer would be no. But that’s how I feel a lot of the time; that people expect me to be ok, to be allllll better. I wish! I want that, too!! And so I have found that if I ask these questions out loud and to people who have their heads on straight (most of the time 😉) that’ll stop the lies, or at least slow them down enough to gimme a second to catch my breath before it all starts again. I know I need help figuring out top from bottom sometimes, so I might as well ask someone who may be able to help me, right? That makes sense to me & that’s how I’ve gotten thru this last year. Answers.🤓

Rant

I’ve been trying to write a blog post since June. Mostly because I want you to know that Mia is stable; she’s feeling quite well.  The humidity of the Summer & September really had a terrible effect on her, we were so thankful when it was finally finished.  It’s an awful feeling when all you can do is sit by as the humidity relentlessly makes every single one of her PH symptoms go from bad to worse. I’m hoping with the end of summer that these feelings of anger and jealousy will go away as well. Yes, I admit it, I’ve felt that way. Sometimes I do feel sorry for myself as I grieve for the life that I thought we’d have. And yes, it is often hard to be on the outside looking in at everybody else out enjoying the warmth, the water, the beach and everything else that makes summer so great; ’cause we weren’t. I’m sure that I’ll feel differently time, but right now I don’t. Right now it just sucks. So, what were we doing? 

We were carrying Mia up the stairs to avoid the chest pains she suffers when she walks up the stairs by herself. And we trying to avoid the heart palpitations that were so thunderous I didn’t even have to be touching her skin to feel them. We were also trying to adjust and live thru my being diagnosed with BiPolar Disorder, PTSD, Anxiety & Chronic Depression. I now have 4 more reasons to hate PH; They say my diagnoses are a result of Mia’s diagnosis. And trust me, developing and living with a mental illness is no picnic for me or my family.  This summer was tough and it was only with help and support that we survived it at all. Truth is we were struggling in every single way possible; We Still Are. 

Hey, did you know just how much our mental health system sucks! Well it does.  It’s impossible to get anywhere; especially without a psychiatrist. Apparently there’s a shortage of them province wide. In York Region there’s not even a wait list to ask to be put on! Personally I think it’s horrendous but even more so, it’s dangerous (and more than a little scary)

On a brighter note: Mike deserves a Metal AND a Big Shiny Trophy for continuing to do literally everything to keep our heads above water. The most important thing to him is us; individually, as a couple and as a family. My man is amazing and he impresses me everyday.  I can truly say he’s my Hero, my Prince Charming & my White Knight all rolled into one.  Where would I be without My Mikey, he rescues me Daily and without him, I’d be nowhere. 

Oh!! And no one is sleeping around here either… like Ev-er! But on the positive side: We’ll look like real Zombies just in time for Halloween! 

So there’s your update. It’s not frilly or exciting… but it’s honest 💜

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

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!