Monthly Archives: November 2016

Keeping up with the Jones’

Isn’t that an expression?

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

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

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

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

We are PHamily ✨

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

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

Jason and his girls Megan and Maddison.

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


Blood doesn’t make you PHamily

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

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

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

Mary Ann, Wayne, Philippa, Sienna and Linc

Michelle (me) Louise

Lora and Melody

Ryder, Ava, Lyric, Bella, Ever and Ella

Mia and Jenna

Brendan, Lois, Wayne and Calvin

Mia and her daddy, Mike. 

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


#BeBraveAndSparkle ✨ 


 Both Sides

I’m gonna share some texts between my and my mama last nite…she is in Florida with Allie… eeeeeeeeven tho I know she would rather be here. I can’t say I blame her, I don’t like being more that 5 minutes away from Mia, either. But to be honest,  I’m not sure she completely understands the priceless gift she has given my youngest daughter. 


Me: Aaaaaaand we just had to wake her up outta bed and do a second site change!! Oh ain’t life grand!

Mama: Why?

Me: It was too itchy. And when we moved it the first time today, and then tagadermed it, there was oozing from the old site (which as per instruction, of course was quite close to the new one) 

Mama: Poor Mia (and mommy)

Me: My heart just breaks for her!! The sheer panic that comes across her face when she gets told she has to have a site change. It’s heartbreaking. There’s no other way to describe it. And *I* had to make her feel that way TWICE today – I get to be the asshole who did that to her – not once, but TWO times today.

Mama: But you were a good mommy to have noticed! Totally sucks though.

Me: I miss you. I can’t believe it’s only Tuesday!

Mama: I miss you too, I had just counted how many sleeps before I could come home. Not sure I want to travel anymore. However Allie is having a great time. 

Me: I can’t say I blame you. I can only imagine how far away you must feel. How’s your anxiety level? 

Me: You are giving Allie the most wonderfully precious gift. Not sure we’ll get to take vacations like that anymore. Thank you xx


So while we’re at home doing this:  

Allie is in Florida doing this: 

Mia and I were supposed to join this trip, too…  but Mia has yet to be cleared safe to fly. So that’s now TWO vacations that have been cancelled for Mia. We just couldn’t do that to Allie – AGAIN!

Auntie Mandy, Kate (Finn and Charlotte) and of course my Mama… Thank you for giving Allie the time of her life, something special; just for her. I know it’s hard to be so far away, but you have no idea how much we appreciate the sacrifice you’ve made, for her. I hope Allie will remember this trip forever. Because realistically, we really don’t know if we’ll be able to take vacations like that anymore. 

It’s true what they say – when one member of the family gets diagnosed with Pulmonary Hypertension, the whole PHamily is affected, and every life is changed. 

Oh, and as a side note… here’s my tiny ferocious panther of a kitty 😳

#PHuck PH

Sometimes what is put out into the world, isn’t exaaaaaaatly reality. Sometimes ‘#BeBraveAndSparkle✨’ just isn’t how I feel. Sometimes the Sparkle is all gone and what’s left is a million tears that leave me with puffy eyes and a heart that is broken into a million pieces.
On May 10th of THIS year we were told our Mia had Asthma, we were given a couple of puffers and sent on our way.

In August of THIS year, she landed at Sick Kids because we wouldn’t accept that as her diagnosis. I mean really… children with Asthma don’t generally run out of breath walking from the front door to the car, and I’m pretty sure they don’t faint for no apparent reason. They certainly don’t have a seizure in your arms in the middle of the nite as you carry them to the bathroom (because they physically couldn’t walk to there on their own) And I KNOW they don’t wake up in their bed clutching their chest while screaming in pain!! I’m sorry, but that’s not Asthma! And only 3 months after we were told she had Asthma and was given puffers; she was diagnosed with Pulmonary Hypertension; a progressively fatal disease and we are told there is no cure. What? No! That’s MY baby! NoOoOooOoo!! NOT MY MIA!

I am aware that often from the outside looking in, it appears like we’re doing pretty well; that we have it all together (or at least most of it) and that we’re just the same old ‘Berdan-Clan’ as we always were. From the outsiders perspective, life doesn’t really look all that different.

But It IS different! Our daughter has a fatal disease!! So No! I’m not the same person I was 4 months ago, but oh how I wish I were! Because 4 months ago my daughter had Asthma and puffers. Today, she has a fatal disease and no cure. Instead, she has a medication that doesn’t allow her experience a lot of the things most children her age just DO naturally and never give a second thought. Like getting in a bathtub or a shower – it takes us a lot of time just to get her IN there, and then the shower or bath itself… well, it’s reeeeeeally not a pleasant nor a relaxing experience! Swimming pools. Oceans. Lakes. Water Parks… All off limits… she can’t submerge her ‘Site’ and her pump cannot be waterproofed – she’s not allowed to swim, period; and she loves to swim. She can’t keep up with her friends, she tries her best; but realistically doesn’t have the energy or the stamina! All she wants is to be a regular normal 10 year old and do the things that she used to do, but she can’t anymore. And let’s face it – more often than not she feels like shit, but she doesn’t often complain about it.

Me? I get to know all that stuff (and more!) I also get know that I can’t do a damned thing about it! I’m helpless to save my daughter’s life or make it the ‘normal’ she once knew… and I get to be aware that her life has forever been changed, and not for the better! And I am expected to be the same person I once was. Ha, ok! I have to carry an emergency pack of her medication everywhere I go ‘just in case’ – and I can never be more than 3.5 hours away from her. Because if she’s unhooked from her medication for more than 4 hours, she’ll go into heart failure and die! But ‘You’ll just have to Find a new normal‘ they say – like it’s that easy! I know we will… but first we must process what the hell just happened this summer and the new reality that our life has now become; without ANY warning!!

I’m often told how strong I am, and I have people telling me that that I am inspiring and courageous! And while I appreciate that, (I really do… honestly sometimes it helps me to push thru this nightmare)… but I am NOT Wonder Woman: I am a mom. And I believe that any one of you would do the exact same thing that I am if we were talking about your kid. I’m really not any stronger than you’d be, I promise: I land in a blubbering lump of a whiny mess more times than you can even imagine. And trust me, my strength is nothing to envy: Because my strength only came out of a circumstance that I didn’t ask for, and most definitely don’t want! I am not brave, not really… the reality is that I am actually scared shitless every single minute of every single day.

I know what some of you want tell me to “Give it to God and Pray” or  “Yell at Him ~ He’s a big God and He can take it!”. But the truth is, I’m kiiiiiinda not on speaking terms with God right now. But please don’t construe that as I’m asking you not to pray… PLEASE do… just know that I can’t.
I mean 3 months ago Mike and I needed to make a decision about subjecting Mia to an invasive procedure called a Cardio Catheterization that could either:

a) Potentially allow her to live a much longer and fuller life!… or

b) Potentially has a 98% chance of killing her (due to the central sleep apnea that she developed from having PH)

No parent wants to ever be put in a position where they have to actually make *that* decision! Seriously… can you imagine?

But we wouldn’t accept those as our only options either!! So when her doctors agreed, took a ‘shot in the grey’ and started her on a medication without knowing the exact pressures in her lungs… that alone in an of itself was scary enough, and that was a very small part of what we as a family has endured this summer.  If I am to be completely honest, sometimes can’t believe that we are still standing and not locked away in a rubber room somewhere! And without our support system, we probably would be.

Don’t get me wrong, I am beyond grateful to the expertise of Sick Kids Hospital and her team of Doctors. And Yes!!! I am grateful for the medication that she is on, thank goodness that it is masking her PH symptoms, making her *feel* better, and essentially prolonging her life. But let’s not forget; even tho it appears as if she’s doing juuuuust fine, she still has a progressive and fatal disease. The truth is: she’s not getting any better, and she’s not going to. Ever.

So lemme ask you: How would you feel?

September 2007

I came across this note today.  I wrote this to a friend 2007. Interesting how I just ‘ran into’ her mom today – At my house!! She was a buying a PH t-shirt to mail to her PHriend in Alaska! That’s pretty freakin’ AWEsome!!  (Hey Rach, your punching gloves are going to Alaska!) If I hadn’t seen her mom today, I wouldn’t have found this note

“I certainly have been blessed, there’s no question about that eh? It’s funny, Mike and I had the biggest fight of our marriage when we started to think about having kids… I wanted to start Oct. 2003 and he wanted to wait a month until Nov. (I won by the way, and we did start in Oct. but didn’t have our first pregnancy until Nov.) Funny how things work out… we ended up with 4 miscarriages … and in the process of the 2 years of ups, downs, and Infertility Doctor trips and surgery we ended up trying (for what resulted in Mia) in October 2005, but she was conceived in November 2005… ha ha… the Lord works in mysterious ways, doesn’t He? But you know, when my sister died in 1997, and we finally buried her a year later; I put a note in ‘with’ her, in that note I asked her to ask God to send me a little girl… I wanted a little girl so badly, I also thought I’d like her to have bright blue eyes and curly hair… God was gracious and gave me exactly what I asked for! And those bright blue eyes are exactly like my sisters! I get a little bit of Danielle when I look at Mia every day – so yes, I have been blessed… truly blessed! I love my kid, and even when she’s not exacly perfect and she’s driving me a little crazy, I stop and remember what we went thru to get her, and I realize it’s all good… I wouldn’t trade being a mommy for anything in the world! Mike and I will be back on the horse trying for baby # 2 in January… and you know what, I don’t expect any trouble this time, but if I encounter problems again… Mia has taught me that it IS all worth it in the end… that’s what I always tell the women I meet who are having trouble conceiving… because anything that is worth having, IS worth the fight to get it! This is why I say that it’s the women that have the babies, cause I don’t know about you, but i don’t know many men who would put their whole being (body, emotions, spirit) thru that… let alone the carrying of the baby where your whole life style has to be different, then the labour and delievery… ya, I’d love to see a guy do all that! We women are a STRONG and determined gender aren’t we? What doesn’t kill you makes you stronger – that’s for sure! Thanks for the note Michelle, I appreciate your words.”

Chris xx

🤔 Things that make you go Hmm?