Back-to-School 2020

Allie chose virtual learning this year and has been enrolled for grade 6 into the ‘Elementary Virtual School’ (EVS). On Thursday and Friday we had online tutorials to teach the family how Allie’s new school will work. Apparently there are 28,000 EVS students in York Region and 1000 teachers and idk how many admin staff so it is very much like a regular school with 28 kids per class each taught by the same teacher like in regular school. They have it set up for group work, independent work and teacher-lead learning. She has a few friends who are also doing EVS and so the parents have agreed to arrange for the kids to see each other for lunch a few times a week. One of Allie’s very good friends lives two doors down and is also a EVS student – his mom and I decided they should put on their back packs and ‘walk to school’ together (around the block and then into classroom #’s 23 & 25 😜) They are close enough to have recess together, too. So as long as we don’t have too many computer ‘glitches’ in the system or the Wifi goes down I’m sure it‘ll be fine. Mike will be sitting beside her for a couple of days until she (and me!) gets into the swing of things and then I’ll be around if she needs help. Allie is starting her regular school hours and will meet her teacher today! I’m really excited about this..

Mia chose FTF learning this year and has been enrolled in grade 9 at Sir William Mulock Secondary School. Here’s how highschool is working this year: Mia will be in school for FTF Drama first period (right?? What a perfect class for her to start with) and then at 10:35 she comes home for lunch. At 12:05 she‘s taught Science, English and Family Studies online and in two weeks the FTF cohort will rotate to Science and the other 3 subjects taught online. School is out for the day at 2:35 .. that puts her IN the school for 2.5 hours every other day — she’s at home more than she’s in class. I don’t love the idea of switching cohorts tho.. I’m not sure I knew that was going to happen, or maybe I did? Idk it’s all very confusing. But I guess 2 week intervals makes sense? 🤷🏻‍♀️ She has only been at in highschool for one day but she is really loving it so far. I believe we made the right decision for her.

Crossland PS made very sure that Mulock was aware of Mia’s health concerns and so when we had a meeting with her guidance counsellor, she requested Mia send a letter to her teachers introducing herself and telling them a little about PH, how it affects her and what they can do to be helpful is she’s experiencing PH symptoms or medication side effects.

This is her letter:

“Hi, my name is Mia and I’m going to be a student in your class this year! I wanted to share a few fun facts about me that you might want to know:

1. I am a musical theatre nut

2. I have an annoying little sister

3. I have Pulmonary Hypertension

#1 = is my happy place

#2 = really isn’t true (but it’s fun to let her think it is)

but #3? Well, it sucks.

In a nutshell: Pulmonary Hypertension is a very rare lung/heart disease. It affects the arteries of the lungs and screws with blood flow getting that oxygen to the heart. PH makes it really difficult to breathe on a regular day, let alone adding a mask – but although breathing through a mask may be difficult I know from experience that it’s not impossible (and thankfully, it doesn’t lower my O2 sats at all!). Sometimes PH does make me feel like I’m drowning and then my heart starts racing and I have to stop whatever I’m doing and catch my breath. When this happens I stand still and cross my arms over my chest. You’ll probably notice that my head will tilt ever-so-slightly to the side and my lips may be a lovely shade of bluish-purple but I assure you.. I’m ok!! This usually only happens upon exertion -but- we are in unprecedented times, right? There’s a chance that wearing a mask could have this affect on me in class.. though I highly doubt it. But worst case: if I pass out, obviously, call my mom 😉

Sound Scary yet? Don’t worry.. it’s not. I’ve had this crappy disease since I was 10 and have learned really well how to listen to my body — most of the time I am the only one who’ll know I’m having symptoms at all and you’ll just be treating me like any regular healthy kid (Please?) Speaking of symptoms .. I am grateful that my meds are saving my life, but I’m not-so-thrilled with some of their side effects. What side effects you ask? Let’s just say if I get up and fly out of the classroom don’t worry.. I’m just going to puke and I’ll be back in about 10 minutes.

I look forward to meeting you, Mia Berdan”

So, I guess I’ll say: here’s to the weirdest school year yet – let’s hope they make it past Thanksgiving! 🍻

SERIOUSLY!! Enough is Enough!

Sick Kids Visit – August 21, 2020

We always knew Mia would need to be on Birth Control one day because one of her meds (Tracleer) causes such extreme birth defects that she’d need to have an abortion.. that coupled with the fact that she has Pulmonary Hypertension and the increased blood flow during pregnancy would very likely make her heart work too hard and that could put her into heart failure. Now, she also has very heavy periods that really seems affect her PH symptoms and when I asked a few young ladies in the PH community if any of them experience the same thing around their period and none of said they do — so off the SK Gynaecology we go. Their bloodwork showed that her platelet count is low in both number and functionality — so off to SK Haematology we go. They agree with the Gynae bloodwork but of course want to do their own — theirs just came back showing that Mia has a rare blood disorder called: ‘Aquired Von Williebrand Disease’. Ya. I know! Like, WTAF?!!

SoOoOoOoo this is now the 3rd f*cking rare disease she’s had! Remember the horrible seizures before diagnosis .. that was diagnosed as: Cheyne-Stokes Syndrome which lead to the diagnosis of the very rare lung disease that she has: Pulmonary Hypertension, and get this: Acquired Von Williebrand Disease is a rare blood disease that is caused by the PHucking PH!! This is getting ridiculous! Enough Already! I find it HILarious how I was thinking this was gonna be a quick, easy visit to SK; I mean, it’s *just* low platelets and the nurse from Gynae didn’t seem very concerned all. She thought perhaps the low Platelets were being caused by another one of her meds (Sildenafil). But nope.. it’s a rare blood disease instead .. man, I really hate being blindsided .. it happens too often with PH – what a stupid disease. I mean, it’s now reeeeallly starting to feel as if there’s someone up there going: Hey, she already has two rare diseases what’s one more? Let’s just throw a little ‘Acquired Von Williebrand Disease’ at ‘em and see what happens. 🙅🏻‍♀️

Honestly, I don’t know if I’m supposed to be overly upset with this or not.. Mike doesn’t seem too worried and Mia isn’t concerned but I still have so many questions that the doctors didn’t answer (#StupidCovid I wasn’t allowed to be there to ask). I’ll have to do my own research to find out how upset I am but you know what?!! For now, I’m just gonna be grateful for our small PH community who are always there when I need to ask my millions of questions -some of which are very intimate and they don’t ever bat and eye- it was their honesty and transparency that lead us to Gynae which lead to today’s diagnosis. I think I’m just going to enjoy my ‘good-mom’ moment — yes, I am going to take credit for my role in finding this one aaaand I’m kinda proud of me for it *pats own back* 😂. So, before we figure out what’s next I’m just gonna pause and enjoy that feeling for a hot second. #LittleVictories

The good news is that it can be controlled with medication. She’s already given vial upon vial upon vial (upon vial) of blood at the clinic and we’ll have a follow up with both Gynaecology and Hematology in January to find our next steps.

#IH8PH #StupidCovid

PLOT TWIST!

My Rantings on Back to School.

Written: July 30th – August 14th

It’s bullshit. All of it. There is no good solution, there just isn’t. Period. Full Stop. So how is one supposed to decide WTF to do? I can’t speak for anyone other than myself on this as being the parents we are the ones who have to be responsible for our choice and if we make the wrong one WE have to live with whatever consequence comes it. Quite frankly I’m prepared to tell anyone that we don’t need their opinion -but- what we do need is their love and support for whatever tormenting decision we had to make. Speaking of.. I can’t believe I am going to write what I’m about to write but here it is – They’re going back to school and they are going to be physically IN the classroom.

#Dammit!! That hurt. Just writing it made me hyperventilate. Fuck. How am I supposed to do this? Ok. Okay *Inhale* I don’t *want* them to go back to school. I don’t! Who does?! I mean, Mia has a fatal lung disease in we’re in the middle of a lung eating pandemic! Our bubble has been tighter than Fort Knox and now we’re sending them to school?! Where was the in- between? I’d like to know how does the government go from strict bubbles of 10 all the way to full-time-butt-in-seat-in-school-classes in 4 weeks? Without seeing the effect of Stage 3? I know! We’re certifiably insane to send them back and not only that this year we are sending them to two different schools! That twice the germs! Yay.

If I’m being honest, I’m actually more concerned about the fact that Allie is still at Crossland PS for grade 6 than I am about Mia at Mulock SS for grade 9. This ‘plan’ puts Mia in an air conditioned school, with a meter of distancing and mandatory masks for 2.5 hours every other day. Allie on the other hand is in the classroom for a full-school-day where the windows don’t open more than a crack, there’s poor ventilation, there’s no air conditioning AND there will be a full class of masked students in a regular sized classroom. Does this make me highly uncomfortable? Uh, you think? But let’s face it, life in the Berdan-Clan is pretty much just varying degrees of uncomfortable all the time .. but ya, this is a SUPER elevated level of uncomfortableness.

We had to drastically change our life in 2016 when we discovered the fear of PH in flu season – I understand that Covid and the Flu are NOT in the same league but the fear feels the same and here we are being faced with the same damn fear: a virus that could kill her. (Here’s a reminder of my rantings from our first flu season with PH): https://bebraveandsparkle.wordpress.com/2017/01/14/stop-the-reeling/ ) We adapted then and we’ll just have to adapt now. We’ll just have to suck it like we always have. And I know we can do it because we learned how to keep her safe when bugs and germs are running rampant in schools from October to April every year for flu season — and there’s a vaccine available that least protects her a little -but now- here we are in 2020 being faced with Covid-19 which is worse than the flu on steroids except instead of at least a few people getting a flu shot .. there is no Covid shot at all. For anyone. It’s not an option. Shit. Yet somehow it’s oddly comforting to be back on the same playing field as everybody else – now everyone is scared of a virus that could kill them. I’ve always said I wouldn’t wish this kind of fear on anyone else but here we are .. I’m sorry guys .. it sucks to be here 😔

So how did we decide to send them back?!! As parents of a medically fragile child we‘ve had to make many shitty decisions over the last 4 years and weighing the facts and the evidence against our emotional responses while factoring in my own mental health surrounding allowing Mia to be as ‘normal’ as possible and to enjoy the quality of life she has now against becoming more and more depressed alone in her room and not living at all.

So what was discussed during our process?

First: The numbers of Covid cases in our school district are very very low and are steadily declining.

Increased sanitation: I knoooow it’s not going to be ANYthing close to what the government believes it’ll be.. but anything is better than nothing and to this point we’ve had nothing. Also, we don’t have to rely solely on the school board to keep things ‘clean’ because the whole faculty and student body don’t wanna be getting this thing either so I have to believe that they will be doing their part to protect themselves. Do I believe they’ll do it in a way that is ANYwhere close to how the government thinks they will? I’d hope so, but realistically No. But here again – anything is better than nothing aaand to this point we’ve had nothing.. So again, I miiight even say that she’s even a little safer in school now than she has been for the last 4 years.

My girls as individuals: Even with knowing the risks and responsibilities they bear by being part of our PHamily -and- knowing that school will be drastically different from what they’re used to they both reeeeallly want to go back. They’re also old enough to take safety precautions and to understand that to go to school during a pandemic will likely take a big mental and an emotional toll on them : add to that a HUGE physical one for Mia as well (it will NOT be easy for her to breathe thru a mask all day) but our girls are wise beyond their years -they’ve had to be- and we’ve taught them how to think thru big decisions like this – and I mean, THEY are the ones who will be entering these war zones .. it wouldn’t be fair if we didn’t let them be part of the narrative (did you catch that one Hamilton fans? 😉) we have to consider what they want, too. But please hear me when I tell you: If they were in grades JK-4 this wouldn’t even be a discussion.

I trust my kids: We’ve been very cognizant of germs and bugs and viruses since 2016. Between 2016-2020 they’ve learned ALOT about how to keep themselves safe from said germs and bugs and viruses. Now, were they very diligent about such things between 2016-2020? Maddeningly, NO — but you can bet your ass they are now!

But the clincher for me is this: Everyone has to wear a mask. I’m a true believer in masks and I’m glad they’ll be mandatory. Without masks in the classrooms my kids would be taking their full-time-butt-in-seat-classes in the kitchen. So yes, this one is HUGE for me and if I’m honest it was a BIG deciding factor – Do I think everyone else is going mask-up in the way the government thinks they will? Nope! I don’t but I hope they will!! And hey.. anything is better than nothing and to this point we’ve had nothing, so..

Mia will wear her mask and Allie will wear hers and they’ll sanitize the crap out of everything, and they’ll diligently wash their hands many times during the day and they’ll use the hand sanitizer like it’s going out of style and they’ll Socially Distance the best they can and hopefully the mental health and well-being that we are trying to balance with their safety will be accomplished aaand once again the Berdan-Clan will have adapted to the scary life of living with PH and a virus that can kill her.

But at the end of the day did we make the right decision? I have no idea. And that’s the scary part. It’s bullshit. All of it. There is no good solution, there just isn’t. Period. Full Stop.

Note: With all this being said: This could all change when we speak with our PH team and after we attend a webinar specifically surrounding PH and back to school – but barring them recommending that they do NOT go back or if I completely chicken out .. off they’ll go. #Dammit 🤬

Here comes the PLOT TWIST!

AUGUST 11th UPDATE: The PH panel didn’t give any reason why Mia shouldn’t physically start high school IN the classroom – yay? On the other hand: Allie has decided she does not want to go to school and clearly we are not going to make her so she’s going to start grade 6 via virtual learning – yay! I didn’t realize how heavy that was wearing on me .. I’m just so used to having to choose between shitty options, suck it up and figure it out -it’s autopilot- but as soon as she said she didn’t want to go to school I burst into tears. It was instant relief. I gotta say.. it definitely feels very strange to be sending Mia to school and keeping Allie home – This pandemic is weird.

AUGUST 14th:

Berdan-Clan COVID-19 update.

We have so many wonderful PHriends & PHamily who have been asking how we’re doing over here in our perfectly sanitized little bubble so I thought I’d take a second out of my EXtremely busy day and give you the update …

We’re Okay!! To be honest, it hasn’t changed too much for us – well except that now there’s another potentially fatal lung eating disease that could literally kill my daughter – aaand now I wash my fruit and eggs – but you know .. other than that we’re good! 😉 Mike and I have been working from home since 2016 when Mia was diagnosed with Pulmonary Hypertension .. so sadly we already went thru a lot of this on a personal level – and it was also because of a f*cking fatal lung eater! 😠 We didn’t have a choice but to learn how to make our life work from home. I mean, when all-of-a-sudden your kid’s life is in serious jeopardy and you’re scared outta your head .. I’m sure you’d agree that NOTHING else matters. Nothing! So our world stopped – PH stopped our life dead in its tracks. And in the wake of our life crumbling beneath us we both pretty much lost our businesses – and then I was admitted to CAMH and came out with Bipolar and our life stopped again. It also stops when either I go into depression or if Mia’s PH symptoms flare-up or if she’s having side effects from her medication. Not to mention that with my Bipolar came EXtreme anxiety and often I can’t leave the house -especially not to the grocery store- so I think it’s safe to say we’ve pretty much got our life in self-isolation down to a fine art — especially during flu season, because that’s when things becomes more of a lockdown. I’m sure you’re getting a good idea of what it feels like to be medically fragile when there’s a virus floating around, it sucks, right?! — I cannot tell you how much it breaks my heart to see all of this happing to the people I love AND on a global scale! It’s insane what’s going on out there and it’s scaryAF! You’ll never believe it but I’ve found myself *actually* picking up the phone and calling my friends – on purpose! They were there for me when my world flipped upside-down and I was scared shitless. Now I want to be there for them and listen to what’s flipped for them .. Aaaand I’ve been told I’m easy to talk to .. so if you need to talk, gimme a call! The only thing I can do is listen.. but trust me.. sometimes that’s all you need. (Right, David? 🙏🏼)

The girls are ok – Mia is perfectly healthy and not at all bored because she’s had a fatal lung disease since she was 10 years old so this is pretty much how every flu season goes for her… sadly she’s used to it (*enter desperate plea for everyone who knows us and loves us -or even if you don’t- to protect us by having a flu shot EVERY year -the.plea.is.almost.done.hang.in.there- *takes a another deep breath* because then you’ll be allowed to come over to our house and my girls will be able to have their friends over and hang out with them in our bubble* Phew. *Steps off her #Soapbox* eh hem. As I was saying.. I know it seems like she’s most comfortable on the stage, but trust me.. when she’s not in lights, she has her head stuck in a book – she’d be happy to be tucked inside her room all day long. Now our dear sweet Beans on the other hand… she gets really restless .. she’s cartwheeling and TicTok dancing all-over-the-place ..she’s flipping upside-down with her feet on walls, she’s sliding down the banister.. she is a true extrovert and she NEEDS people. All. Day. Long. And when she can’t have the humans, she starts bugging the cats — I starting to think Phoenix & Raven are learning how hard it is to be stay-at-home parents 😂! — But thank goodness we have that little ray of sunshine cause rest of us would be happy to be ‘alone’ together (if that makes any sense?) we need her to interrupt our silence.

But now we’re standing here asking ourselves: How the hell do we make sure they don’t emerge out of this quarantine a couple of zombies? I know that ‘home-school’ is supposed to be in session and as much as we’re trying to figure out how the hell to do that, we also don’t really care. The world is scary right now, especially for Mia who put this way: “of course I have anxiety.. there’s a lung eating virus out there, mom!” I don’t want to push her too much right now .. or any of the rest of us, quite frankly. This family has a lot on our minds atm and tbh those brains are not functioning at full capacity right now. Sure, we might do a little bit of ‘school’ each day, or we might find we’re more like supply teachers and find some interesting documentaries to watch. Maybe I’ll show them some basic life skills .. ‘cause let‘s be honest, they pretty much don’t have any! Whoops #MomFail) and we’ll go for walks and we’ll play the board games and the Wii games and we’ll rediscover the Wii Fit (🤣) and we’ll Zoom with other families and we’ll call our friends and most importantly we will stay safely tucked away inside our perfectly sanitized little bubble and we’ll try to find the silver linings in all of this. Like this little gem: Every single doctor, specialist, researcher and medical expert in the whole wide world are looking deep inside thousands and thousands of lungs – I can’t help but hope that somewhere in all that devastation there is a cure for PH.

Side Note: We got hooked on Mario Cart and OMG! I suck SO badly. I seriously don’t know why I can’t drive the damn Car!!

Welcome 2020

The fact that we’ve entered into a new decade has me rattled.. along with the hope: ‘this will be the year.. blah blah blah..’ (which I hope is true🤞) there’s always the feeling of racing against a fucking clock to defuse fucking bomb and not having the fucking skills to do it! And time is running out!! No matter how hard I try.. it’s always a bad day for me.

I. Hate. Today.🖕#IH8PH

Photo Credit: Andy Dench – Digital Artist

It’s PHantastic News!

Last Thanksgiving we gave thanks that Mia’s doctors finally agreed to let us try the transition to oral meds and on October 7th we went to Sick Kids to officially see if the year long transition from #RemoSubQ (aka ‘That Damn Pump’) to pills has been successful. I am happy to report that this Thanksgiving we will be celebrating that it has!! I know a lot of you are very invested in our story, so I thought you’d like to share in the results of today’s tests with us:

• The right side of her heart is smaller.

• Her right heart function (squeezing) has improved and looking normal(ish).

• The lower lung pressures that they saw in May via the Cardio Cath are being mirrored in the Echocardiogram she had today.

• She walked 1/2km in 6 minutes!!

• There has been no progression in her disease since her diagnosis 3 years years ago.

• She’s is stable and they don’t want to see her for 6 MONTHS!

• Did you get that? SHE. IS. STABLE!!

The road to get here wasn’t easy and we all know how hard she fought to get off that damn pump, and I’m sure you’d agree it was worth it!

For the first time in a LoOoOoong time Mike and I are finally able to temporarily exhale.

🍁 HAPPY THANKSGIVING!!! 🍂

#TheyDontCallThemPHightersForNothing

#PHightModeON. Pulmonary Hypertension Association of Canada #TakeAnyVictory #Stable!!

Photo Credit: Andy Dench – Digital Artist

Wishes Do Come True ..

So what happens after you’re told that your kid qualifies for a Wish with the Children’s Wish Foundation? You cry. You cry for a long time… as you can probably imagine it’s the most wonderful and horrible gift we’ve ever been given. I mean, how awesome is it to be given $12,000 to do pretty much whatever you want with, but what do you choose? How do you choose?

Our family has been listening to Mia’s wishes for 3 years now… and her wishes have taken us everywhere! To meet celebrities like: Katy Perry, Why Don’t We, Robert Downey Jr. and Tom Holland. To Disney World: with fast passes for everything. To New York: for a Broadway experience. To England: to visit her best friend Maya whom she’s never met. To France: to see Paris. To Italy: To have the best pasta on the planet and see the Leaning Tower… the world was her oyster and she had a big decision to make! Of course we all have opinions and sure, we share how we feel, but ultimately it’s Mia’s Wish and CW gave her 5 years to dream big and make it. It’s probably a good thing that the Wish must be made within 5 years .. up until now I’m not sure I had really accepted that Mia was a Wish Kid… because in order to do that I’d also have to accept that she really IS quite sick aaand if I accept that then I’d also have to accept what happens if something doesn’t drastically change, and soon! aaand as much as I prefer to keep that box on the shelf… I can’t it there hide forever, right? The 5 year deadline made me take it down and look at it. 💔

To be completely honest, beginning this process was a lot for me to work up to.. harsh realities are funny that way … but sometimes the only thing to do is pull up your big girl panties, stare your reality in the face and just get ‘er done because you’re a grown-up and that’s what grown ups do (#Dammit 😉)

I figured the first step was to stop freaking out and call the Children’s Wish Foundation .. so I did. I spoke to a Wish Coordinator named Jonathan and in addition to talking about a million different potential wishes, I must have cried at the poor guy at least 3 times. But he was gracious, he was empathetic, he was very helpful and after hearing my concerns about all the wishes Mia wanted to make, he was able to suggest the perfect Wish for our family… a Swimming Pool! It was Brilliant, it was the first Wish that we all agreed on and the more I thought about it, the more I realized that it really was the perfect Wish! By choosing a swimming pool we wouldn’t have to worry about weather, or elevation, or language barriers or where the closest hospital is. Wishing for a swimming pool allows us to eliminate the inevitable unknowns that come with Pulmonary Hypertension patients and travelling -and- we get to enjoy all the fun and the memories that’ll happen for years to come when friends and family gather -and- on her bad days, she won’t have to miss out on EVERYthing, she can invite people to come visit her!

But with so many pool companies out there and so many choices my poor brain was going CrAzY – so I contacted my old friend Dave, who’s family is in the pool business, and he said: “Call Backyard Pool and Spa in Aurora .. they’re the experts in above-ground pools”. So I did! And after I cried at Tyler and then again at Gail a few days later I met the owner, Don Smith.

We stood in our backyard and while he took measurements we talked about our options… not surprisingly there is very little you can do with an itsy-bitsy teeny weenie backyard, especially if it has a big ‘ol maple tree smack dab in the middle of it; and that’s when he started taking about the Vortex Aqua Lounge Swim Spa. It didn’t take us long to realize what a perfect solution it would be for us -but- we also knew that a Swim Spa was DEFinitely not in our budget; that’s when Don said: ‘Ours is a family business and I want to do this for your family’… aaaand that’s when I cried all over Don. My eyes still well up when I think about how BackYard Pool and Spa took Mia’s Wish and blew it out of the water. Literally! So now in addition to our initial reasons why a pool was an great choice .. a Swim Spa also offers Hydrotherapy as well as Pulmonary Therapy, we don’t have to alter our property AND we can use it 365 days of the year – it never has to close!! What Don did was give us Mia’s Wish on steroids!

I’m not gonna lie, I’ve found this process quite difficult and HIGHLY emotional … to be given a Wish really is surreal and as much it makes me feel utterly sick that we even qualify, Don and Jonathan (or as Mia affectionately refers to them as ‘Donathan’) made it as easy as it could possibly be. It warms my heart that Mia wants hers to be a place where friends and family will come together and use her Wish to make a million memories while we wait for the Cure. We’ll forever be grateful to The Children’s Wish Foundation and Backyard Pool and Spa for making that happen.

Oh!! AND!! AAND!!! How poetic is it that 3 years ago we thought she’d never swim again, and now there’s a pool in our backyard! She deserves it, she fought hard for it.

#BringOnTheCure 🤞

#PHightModeON. #WishesDoComeTrue #ChildrensWishFoundation #AquaLounge #BackYardPoolAndSpa #MemoryMakerWith59Jets #ThatCraneTho #DonathanRocks #PHsux #ImGoingSwimming #HotTubbing #Grateful #Humbled #Speechless #PulmonaryHypertension

For more information about Pulmonary Hypertension or to make a donation – click here: http://www.phacanada.ca

For information about the Children’s Wish Foundation or help make another Child’s Wish come true – click here: http://www.childrenswish.com

To check out Backyard Pool and Spa (aka the best Pool company in the business) – click here: www.backyardpoolandspa

Tell them Mia sent you 💜

#MissionAccomplished

OMG. What a ride! Since September 2016 our goal has been to get Mia off that wretched RemoSubQ pump. That damn pump was standing in the way of Mia living her best life – regardless of how long or short. 9 months ago we began the transition to oral meds and in that 9 months we’ve either been filled with hope or full of despair and ready to give up or both. More than once it honestly felt like we were going to lose her, like actually lose her. There were times when as much as I despised that pump *I* was ready to slap it back on because her PH symptoms were coming back – fast – and I was scared shitless! She was getting sicker and sicker right before my eyes .. and as I was watching her deteriorate, she kept telling me that she was okay and she asked me to trust her. I took a deep breath, I looked my 12 year old in the eyes and thru tears I said: ‘Ok baby-girl, if you’re willing to continue the physical hell this is putting you thru then I will continue to endure the mental prison it has got me in -BUT- you do not have the option of 1. telling me to stop asking how you’re feeling – yes, even if it’s a million times a day and 2. not being 100% honest with me – because if you tell me that you’re feeling better than you actually are – I will slap that damn pump on you so fast your head will spin. Ok?’ And then we shook on it. I can’t even tell you how many times Mike or I have said: ‘How are you feeling?’ ‘How are the chest pains?’ ‘Are the chest pains better or worse than after your last echo?’ ‘You look grey’ ‘Your lips look blue’ ‘how’s your breathing?’ ‘Do you need to stop?’ ‘Are you ok?’ ‘Can I do anything?’ It was awful.

UPTRAVI was the game changer, it had recently been approved for public funding (which made it available for Mia). This was it! This was Mia’s best chance to get what she wanted – we had to try! But Uptravi didn’t come without it’s challenges. Every titration made her so sick. Like reeeally sick. She suffered relentless migraine status headaches and she puked for days on end. She missed so much school that she is now so far behind and idk if she can catch up. She never saw her friends, like ever .. she just didn’t have any energy; so much so that she had to drop out of the one thing that she loved the most… Musical Theatre. BUT! at least her PH symptoms were slowly getting better… talk about a double edged sword. Somedays she craved ‘normal’ so much that she’d go to school only to end up puking in a bathroom stall and calling to come home. Sometimes she even went back to class. Yes seriously.

I’m proud of her tho, aren’t you? That kid was dragged over the fiery coals of hell but she never gave up – I may have wanted to give up, but Mia never did. Not once. She had her eye on the prize and there was no way she wasn’t going to reach her end goal. She kept saying: ‘Mom.. I’m ok, trust me’ – and then she’d kiss me on the forehead and say: ‘It’s ok mommy’s brain, you can relax – Mia’s fine’ and because she was, *I* also had to be WAY braver than I felt. I had to keep telling myself that as long as Sick Kids says she was safe, then I damn well wasn’t going to be the one who stood between Mia and the life she desperately wanted. So I trusted her… But holy shit, was it hard.

The results of her recent Cardio Catheterization showed that her lung pressures are the same as they were when she was on the pump! That means the Uptravi is working and she’s stable. I would have loved for you to have seen her face when Janette told her that she’d won this battle – and she likely wouldn’t see that stupid pump for quite some time. I’m telling you, it was worth every single breakdown, every single sleepless nite and every single gray hair on top of our seriously exhausted heads. I’d say she’s learned the meaning of the saying ‘Anything worth having is worth PHighting for.’ Well done, kid. I’m proud of you. Enjoy your freedom.

#MissionAccomplished

#IAmDone too – at least for a bit, okay?

🏖 Nightmares in Paradise 🍹

To see the pictures it does appear like the perfect family vacation, one I never dreamed I’d ever have… and in many ways it was! Mexico was amazing… buuut unfortunately it was also uncomfortable AF for Mia and kiiiinda scary for us. Tbh it was very hot and really humid and Mia was struggling to breathe half the time – there were actually a few times when she got so dizzy that she nearly passed out – not that she has any memory of it!

Thank goodness Mike had the foresight to insist we have a room with a swim out pool or quite honestly it really would have been a very different and pretty disappointing vacation.

Mia spent 3 whole days in our room because outside was unbearable for her. She needed a lot of time in the AC of our room and was commenting on how she wished to be back in Canada where it was cooler and much easier to breathe.

We had 2 very looooooong travel days that left us with partial days of sun, we spent 1/2 a day at the main pool, one full day at Xel-Ha, and traded the beach and the gorgeous lagoon for 3 days in our room. I honestly don’t know if we’ll ever do a trip like that again – but I do know if we do decide to try it again, it would have to be in a much cooler month than April.

Don’t get me wrong it was fun, but it certainly was not easy and it was DEFinitely not relaxing. Lemme give you a few examples of what the pictures don’t show you… Mia and Allie decide to go swimming (Mike and I are in the room with the door open, listening) and Allie starts calling for Mia… ‘Mia Mia MIA!’ she calls. Now we’re kinda used to Mia ignoring Allie, but this didn’t seem right. What happened was that Mia had gone swimming around a corner (which she is very capable of doing) with the intention to hide on her sister (we later lectured her about that one!) but she swam too fast, got chest pains and nearly passed out in the pool. I yelled ‘MIA!’ out the door she popped her head up and somehow got herself to standing on the deck but was wobbling like she was gonna faint and I could hear myself yelling: ‘Mike get over there and catch her!!’ which he did – and I don’t know how he did because that deck was a lawsuit waiting to happen – no joke at some point every single one of us had already slipped on that damn deck and landed our butts! It’s a hazard! – but somehow he got there and he caught her before she fell into the pool and she doesn’t remember a thing!! It was scary!

And then at Xel-Ha I had to run after our tour guide because Mia had stopped – she couldn’t breathe and the group was getting farther and farther away from us and we had no idea where they were going!! It’s not easy trying to explain that your child can’t breathe and has chest pains so she can’t keep up with the group to a tour guide who doesn’t understand English very well! I know as a parent you can imagine – in full detail – what we must have been going thru. It was horrific.

That same day in Xel-Ha she went snorkelling with the Dolphins – I can imagine that if breathing is already difficult, breathing thru a snorkel must be impossible. She came to the conclusion that she’ll never get to be a Marine Biologist – which was disappointing because that has been on her list of top careers for quite some time now. It’s not fair really.

My hope is that the memories of being scared and uncomfortable and disappointed will fade away and only the smiles will remain. I mean, guess I could say that it was nice to deal with the same old shit in a different place, but it helps that it was a place where someone was giving me drinks, doing all the cooking AND cleaning up! I gotta admit, that was fan-friggin-tastic!! In all honesty, it feels like I got thru this vacation by repeating to myself: “This is why we bought $600 in travel insurance” and then I took a deep breath, popped an Ativan and continued creating memories.

I’m glad we did it tho. It’s better than sitting around letting the disease scare us into never doing anything; I say as long as we’re being safe then WE should get to decide what our limitations are. We’ll just take what we learned from this trip and use the knowledge to make the next one better. We won’t let fear stop us from giving our girls the world – we never have and we never will – I just wish we didn’t have to live thru such shitty crap in order to learn the lessons we need to make these good memories.

But did you see the pictures? I mean look at their little faces…

That’s why we do it.

Because Damn! It was worth it.

Adios Mexico!

Hello PTSD. You can leave now.

Yesterday at Sick Kids was – yet again – a rollercoaster ride. Mia was there for an echocardiogram and a 6 minute walk test to determine whether the UPTRAVI is doing its job – which it is! Which means no pump! Yay! The echo showed that her pressures are indeed down, but that actually came as quite a shock considering what had happened right before we got those results. Mia attempted twice to complete the walk test and twice she failed to do so. She tried so hard!! Poor kid – but both times she only made it about a minute into the walk before she just had to stop. Idk how many meters it was, but it wasn’t many. The second time they allowed me to follow behind her thinking it may ease anxiety and give her some comfort .. buuut we got to the end of the hall and had to call another nurse to get a chair because Mia went grey, her lips were blue, her body was ridged and she was swaying back and forth with her eyes unable to focus. Her knees so were locked that we couldn’t get her to sit down. It was really fucking scary! Seeing my daughter like that is the one of the reasons why I can’t go from being scared shitless out of my head to perfectly happy with the very good echo results. Everything has to be processed by my broken brain. Everything. I didn’t sleep well last nite and when I did fall asleep I was woken up by nightmares. Seeing Mia like that yesterday – all ridged and blue – is something that I haven’t seen since 2016 when she used to walk down the front path and hit her head on the car as she fainted. I’m finding I am reliving scenes from the summer of 2016 .. the summer Mia was diagnosed. I think I’m experiencing a little PTSD and I just totally didn’t expect it. I’m still very much on edge today and am trying to figure out how the fuck I am suppose to deal with this. Why do even our good days have to scare the shit out of us first? 😔