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.


12 thoughts on “Stop the Reeling!

  1. You have a way with words! You’ve described my anxiety to a T!!! The flu scares the shit out of me too and I dread this time of year. My child isn’t medically ill so I can’t imagine what you are going through. Hugs ❤

    Liked by 1 person

  2. Heartfelt and excruciating and hard to comprehend…..all at the same time. But your words do a wonderful job of letting us all know a tiny sliver of what is going on for you all. The brutal honesty was beautiful, your love and strength and Mia’s and Ali’s and Mike’s are why your family will keep on going despite it all, despite all the odds. There aren’t words to say that will help but know we pray for you and your family all the time. Even though Christmas season was over we went around New Year’s and donated to the PH online fundraiser in honour of Mia and her über mom. Xox and love ❤️ to you all

    Liked by 1 person

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