Monthly Archives: January 2017

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 ✨

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The Lesser of Two Evils

Remodulin. To the PH world it’s a Life Saver… buuuut when delivered by SubQ pump, it’s also a huge pain-the-ass to the life that it’s saving. Lemme try to explain something that hit me pretty unexpectedly last nite…

Mia was showing so much more of an interest in her Site and the process of her medication (yay!! she’s engaging!) that I suggested she practice the sterile procedure with the Saline that Mike and I were practicing with in September. Well! Doesn’t she have to take it one step further and suggest she hooks ME up to the a pump filled with Saline! She’s excitedly explaining that I could do her medication/cartridge changes and she could do mine! I say: “PARDON?!” But I’m thinking: ‘Umm No thanks! I’m good!” And she continues with a million reasons why it would help her SoOoOo much!! That was January 7th. CLEARly she won; today is January 21st (Happy Birthday Auntie Barb!) and I’m still wearing the damn pump…. 24 hours a day, juuuuust like her.  I do plan on sharing all my fun pump experiences later, but for now… I wanted to show you the ‘choice’ that PHers have. Ready? Okay! ✨

As I say, mine was inserted January 7th – hers on New Years Eve – The date of the pics was January 20th

This is what they looked like when we took them out. (I am sorry I don’t have a picture of mine, I was surprised with what I saw, that I forgot to take mine)That does NOT look like happy skin at all! It’s itchy and it’s sore… it’s kiiiinda too sore to scratch, so she asked me to cover it up ’cause she didn’t want to look at it or accidentally scratch it. Can you blame her? Youch! Aaaaand since I wasn’t risking infection, I did so with sterile stick-free gauze. 

I don’t know about you, but I’m pretty sure no one would want their skin to feel itchy, rough and sore.  I am DEFinitely sure that I couldn’t find anyone who would say they’d want their skin to look that way. If this is the better option between two choices; well I’d say it’s a pretty shitty ‘choice’. 

Essentially a lot of PHers use Remodulin because really, it’s a pretty awesome medication! The difference in how she feels is astronomical since starting on this drug. And when she’s not suffering from the pain she gets with every Site change — she has so much more energy that she almost seems normal. *Almost*  I mean to look at her, you definitely wouldn’t think there was anything wrong with her; let alone that she was a very sick little girl. 

So what hit me last nite is that a lot of PHers choose use Remodulin via SubQ pump with all it’s pain, side effects and after effects because even tho all of that is quite horrible, it’s still a better option than not being able to breathe. That sucks. It really does. 

Stop the Reeling!

My body feels like its been hit by a MACK tuck. January seems to have been emotionally difficult for me so far, particularly this past week has been quite distressing with extremely harsh PH realities hitting a helluva lot more than a little too close to home. The truth is, and I don’t care who you are… if you’re a parent and you hear that a 10 year old catches the flu and ends up needing to be hospitalized, it miiiight make one think about getting your kid a flu shot. Faaaantastic! Done that. But what happens when that kid you’ve heard about dies? What then? Well, you maaaaay be thinking it’s definitely worth getting all of you a flu shot. Awesome. Great. Done that, too! But what happens when that 10 year old who caught the flu actually dies within 2 weeks because she had very same extremely rare disease that your kid has?  What Now? Cause this is where I find myself…forget uncharted waters… I’ve arrived at a place that I never even knew existed! So what now? Seriously, what do I do now? Idk. I don’t know. I DON’T KNOW!!! *exhale* I…I…  Well, ok…I… Umm… I don’t really think that I have any words that could adequately describe my emotional state this week. My reeling mind was trying desperately to both accept that this is my reality AND figure out what the hell to do about it… it’s really hard to put my thoughts into actual understandable words. The environment inside my head sounds very jumbled and strangely… Irish?  (I must be watching too much of ‘The Fall’ lately)  Aaaaaanyway, lemme try: Shocked. Scared. Sick. Shaken. Anxious. Helpless… Paralyzed? Yes! ALL of those… but probably TERRIFIED or SCARED SHITLESS would be the most accurate!! It’s Fricken FLU Season people!! And I have a medically fragile child who LOOKS FINE, but if she catches flu; it could be quite catastrophic! So sometimes, yes… I have become slightly panic-stricken when my kid leaves the somewhat controlled environment that is our home and heads out onto the Battle Field: The Outside World! Honestly, sometimes that is how the world feels to our PHamily – Like a Battle Field with Flu-Bullets flying and Germ-Bombs going off everywhere ~ I’m not joking… they’re ready to detonate at any given moment. I hate winter and OH HOW I HATE FLU SEASON!! But what am I supposed to do?… make her stop living her life, stop being herself? Stop going to school and seeing her friends? Think about it… I just described jail!!  She didn’t DO anything wrong? It’s not fair that she should have to be put in jail. She’s only 10!

Mia seems to be doing well tho, despite the FIVE painful Site changes that she had to have in December… this last one, we changed the location completely and took it from her arms and put it in her abdomen… way too many Sites have been put in her arms lately and there’s nowhere left to put them! There’s just too much scar tissue and they keep ‘going bad’ and needing to be changed. And Holy Crap! Let me tell you… as far as pain goes the switch to the tummy has been the worst change to date! And although I couldn’t feel it, trust me it was EXCRUCIATINGLY painful. She couldn’t sit, lay down, stand, dress herself, put on her own shoes, bend over, sleep, eat, brush her teeth, laugh or cry… oh hell… let’s just put it this way… she couldn’t move – not without whimpering in pain… I mean honestly, the kid asked for a wheelchair to be brought in the house because it hurt too much to walk. Really? To walk? The poor kid! I would have done anything to take that pain away from her; and that’s the worst part of Site changes; I can’t. Imagine this: You see your baby in so much pain and you cannot do a damned thing about it! There is nothing that you can do or give her that even comes close to alleviating her pain – ABsolutely NOthing! Painkillers do jack-shit and she doesn’t get the luxury of being able to have a relaxing soak in a nice warm tub. So what is a mom to do?  Usually we moms just gather our babies up in our arms, hold them tightly against our chest, kiss the tops of their heads a million times while slightly rocking back and forth; just allowing them to sink into our bodies while they gather the strength they need to get thru whatever it is that is hurting them enough to make them cry.  But I couldn’t even begin to try to gather her up in my arms, attempting to help her feel safe and comfortable; because to cuddle her caused her more pain than it did comfort *sigh* it broke my heart… my heart breaks everyday.  I HATE THIS DISEASE SO MUCH… you have no idea!

But there’s always something to be thankful for, right? Honestly there is! I mean there’s good stuff happening, too. Mia is taking an interest in her disease, and is talking about it more openly and honestly now. Allie too! Mia knows she is free to rant and rave to us all she wants about how much she hates her life and that PH sucks…and we will always listen, we will never judge or hold anything she says during those rants against her later. We will also always answer her questions to her understanding and maturity level, but we won’t lie to her… (Disclaimer: during these times we must also always bear-in-mind that she’s only 10 years old aaand ever since she was really little she has always been emotionally sensitive aaand somewhat of a hypochondriac who believes anything and everything is gonna kill her…) SoOoOoOoo ya. Those are always fun conversations! But hey… at least she’s talking, right?

Anywaaaay… I believe that moving her Site to her tummy has given her a feeling of being somewhat in control of her circumstance… perhaps even feeling as if she is taking ownership of her body and learning to listen to it, which is great because she needs to be EXtremely in-tune with her body to the point where she can describe exactly how it feels to anyone so they can understand exactly what she’s talking about. So as far as I am concerned… she can look at that thing whenever the heck she wants to! And if it looks good to her… she won’t worry herself with it. And if it looks good to her, then trust me… I don’t have to worry about it either; that kid does not want another site change. Buuut she also doesn’t want to feel her PH symptoms return either because they were way way worse ~ I can’t even begin to imagine! I’ve heard an adult PHer actually compare Site-pain to childbirth… saying she’d rather go thru childbirth any day! And Mia chooses to take the pain. Every. Single. Time. Because it’s the less painful option to not being able to breathe. Could you imagine giving birth everyday for 5 days at least once a month?Sometimes more!? I can’t!! We’re not talking period cramps here… we’re talking about pushing another living thing out of your lady parts WITHOUT pain meds… for all 24 hours of the day… for 5 days in a row… without any breaks ~ that’s 120 hours of constant pain… and she barely complains. No… that’s not an exaggeration! That kid, she’s my hero; I actually gave birth my very own hero (and it only took 13 hours!) Of course she can drive me crazy, but she also makes me smile and laugh; a lot! That kid IS one-in-a-million… she’s not supposed to BE the one-in-million who gets a stupid fatal rare disease! No!! It’s not supposed to be like this… PHucking PH is trying to snatch my baby away from me!! But I try my best to be thankful. To be happy. And to be grateful that I had her at all. (Yes… people DO in fact say those things to me)  I really do, and I am! But I’d also like her to love her life and have an actual childhood.  I’d like her to grow up and live a long looooong long time. She’s only 10. She shouldn’t have to worry about whether her Site is ‘good’ or ‘bad’, or otherwise. She shouldn’t even have to utter words like, ‘Will I need a lung transplant’ or ‘What if I don’t wake up tomorrow?’- she shouldn’t have to know about that shit or think about that crap at all!! She’s 10!!! This just shouldn’t even be her reality. Period! She’s only 10 freaking years old!!!  If you find yourself weeping right now, know I am too; you now might have some idea of how I feel most of the time.  So now, what if I asked you to please put on a happy face and go on about your day pretending that absolutely nothing is wrong; could you do that? Sometimes, I can… and when I do, I might just end up feeling better and maybe even having a good time.  And sometimes; I just can’t. It’s really not that easy, oh how I wish it were!… but it’s actually quite exhausting!  But I do try and I am still thankful. I really am… I have a lot to be thankful for ~ I really really do!  See…

img_6803  …. Look at their sleepy little faces… my sweet babies bringing me my morning  coffee… They are DEFinitely my Feel-Better-Fairies, too!!

Reasons to be Thankful Today: 1. Mike – he is my happy place 2. Feel Better Fairies – they help make life feel less harsh 3. Coffee – I am always thankful for Caffeine.

Reflections on 2016


2016 was a helluva year… I’m still trying to wrap my head around it TBH… and not just with Mia’s diagnosis of Pulmonary Hypertension… but with a lot of things, people and relationships. 
2016 was a year that brought with it a lot of tears, heartache, pain, fear, confusion, anger, laughter and love – and my character has been tested more times than I can count. This year the universe asked me, “What are you made of? How much can you take?” This year within a month of each other, both a very close friend of mine and my daughter knocked on deaths door – one was by choice, the other came in the form of a life threatening illness; both personally impacted my life and affected me deeply on so many levels. I have been to more appointments this year, and had enough hospital visits it would make your head spin. I have listened to more doctors speak more mumbo-jumbo that I am starting to feel more like a medical student than a mom. 

The thing is, if I had to do all this alone, my answer to the questions “What are you made of?” and “How much can you take?” would be VASTLY different than the answer I have given in the face of these challenges…because I am blessed to have a support system of incredible people who are always there with a word of encouragement, a tight understanding hug, a shoulder to catch my tears with an ear willing to just listen. I thank god for the ‘Feel Better Fairies’, they always seem swoop in and pick up the slack when I feel I can’t survive even one more minute, let alone another day, and they help tow the line until I feel strong enough to carry it again. 

So my answer is this: 

Yes! 2016 was a pretty horrendous and definitely scary year. Yes! a lot of devastating things happened to a lot of people I love. Yes! We survived things that quite frankly I am surprised we were able to. Yes! we’ve been tried and we’ve been tested beyond what one family should ever endure and Yes! (and probably most importantly) many lessons were learned along the way and my personal growth-factor is at an all-time high. 

When I reflect back on 2016 – the easy thing would be to say that it SUCKED and I’m happy to see it go… but the reality is… I will remember 2016 as the year I really started to become ME! I changed a lot this year! I have found that what I HAVE to do and what I WANT to do are often the same thing and I am happy to actually live in every moment – exactly where I am, and with the people I am with! I am finding that I am more responsible, more loving, more attentive, more understanding and more… present. Despite the shit we’ve endured this year, and the heartbreak that has come with it… we have banded together as a PHamily; borrowing strength from each other when our own tank is empty and as a result, I feel calmer, like this life is more doable and less lonely. Does that make sense? I am finding myself less judgemental and a helluva lot less concerned about what people think of me, and you know what? By freeing myself of worrying about what may (or may not) be in the mind of others… I am free to live IN my life with the people who want to be here with me. 
This year I have learned:

  • Life is precious & definitely too short, don’t take anything for granted. 
  • What matters and very clearly what doesn’t.
  • I cannot please everyone and negativity is poison
  • Stop Judging; What’s the point? We can’t change nor live another’s persons life.
  • Friendships don’t always need to be equal – I’m used to giving more than I take, but this year I’ve learned to accept help graciously… because people genuinely want to help, and because no one can or should do the hard shit alone. 
  • Roll with the punches, life is unpredictable – very unpredictable, and can change in the blink of an eye.
  • Even in the middle of trying to find a ‘New Normal’… we are realizing (and accepting) that in our PHamily there is no ‘Normal’ ~ New or otherwise. 
  • Sometimes relationships end, friends leave and/or dynamics change and that’s ok! 

In 2016 I learned a lot of lessons, perhaps the most important being PHamily isn’t always blood, and PHamily is all that truly matters.
My final take on 2016 – it was a roller coaster ride of every kind of emotion known to man and it all added up to a Beautiful Mess. 

Thank you to all who were there to help us get thru it. And Here’s to 2017! May it be a year of positive changes, I hope and pray that it treats us all well… Cheers! 
Allie, Mia & Lauren ringing in 2017