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?