Supposed & Should are the other S Words

Fight isn’t Over for Us…. no, just beginng Family Photos
Fall 2015
In 2016 and 2017 therapy became a full time hobby.  When I wasn’t doing the things I needed to keep the life we had cobbled together on life support (trying to maintain my job, work a second job, conducting creative accounting between incomes and our charity fund, trying to understand our reality so we could survive it { blogging & support form our tribe}, and still shower daily), so when we were able we would have something to return to….. I was in therapy. Singular therapy, couples therapy, counseling from our medical team, reading both prescribed and self discovered self help and faith based books and workbooks, attending extra masses and additional adoration time – it all counts towards healing, learning and growing through that season. Thanks to all of that time and effort I learned a lot, came out of that time stronger, and am filled with gratitude that I had to struggle enough to get there because it changed my life.


One of the biggest things I learned was how the brain functions is actually a result of what you nourish it with. For me, the discovery led to a lot of  “supposed to” and “shoulda”. Yes I was eating a very healthy diet of expectations I was trying to set and manage based primarily two things: what I thought others needed me to be feeling/thinking/acting/doing and my constant criticism that life wast not shaping up to be what I expected. Certainly there were many other lessons and experiences garnered over those years…. but these two pieces of the puzzle were some of the largest and the start of how I reprogrammed my brain. I am proud to say it is a lot of hard work went in it, but just like most things in life – the good stuff doesn’t come easy. And as may have guessed like other good things in this world, health, strength, wisdom, if it is not maintained it can get lost.


Over the last 48 hours Danny has felt so much better. There were down moments and we are certainly moving at a slower speed – but there was also a lot more of how we have been living that returned. I literally felt the collective held breath be released and just like that we were back talking about plans, enjoying the little things and the big ones…..just feeling right with the world. Maybe we wouldn’t have to come up with plan B after all, maybe we wouldn’t have to find the words on how all our new plans were changing again and we are totally OK with it – to avoid the feeling of pity or loss. I was happy because life was going back to how I feel it is “supposed to be” and I can get back to doing all the things we “should be”. All these good vibes and brains being programmed back into happy because they could stop being filled with questions pushed the desire to check in on reality away and we avoided taking Dan’s lung test. We avoided it since it was clear he felt good and to give the body even more time to just shoot those percentages up up up seems reasonable ( you can also talk your brain into all sort of things)! Saturday evening Danny took them – his lungs are down, even more. Not a lot…. really even a reasonable amount for fluctuation…. but overall that means nothing is improving.


When this news first hit, the emotions took over…. the supposed and shoulds were flying all over the place. And all of our positive feelings for life came to a screeching halt. No need to talk about a move or dream of travel – it wouldn’t be fair because then there would be pressure to make them happen, or that would be negative and focusing on things we might not get. Translation: we fed our brains the message that everything is over and the supposed to and shoulds for our world are: we deal with illness, that we don’t get to progress, that we will always have one stop forward and two steps back. And just like that donuts slides down the throat way easier than a kale salad….. that way of thinking took over.


This weekend I felt completely different. The last 48 hours we were back to the selves of the last few months – when in reality the numbers, the medical diagnosis, the reality had not changed. But our minds and our hearts and our selves FELT BETTER.  When the goal is to get better and we are to be doing all the things we can to make that happen – why not feed the mind positive thoughts, affirmations that our dreams are still coming, and the power of possiblity? Heck it could help! Mind of matter and all that jazz….  And with this realization I was over come with gratitude: the reality of the situation is different. Because as opposed to 2016 and 2017 – we already know the secret weapons: the mind is made up of what you nourish it with.


The numbers being down totally stinks. Danny having a blood sugar drop on Saturday that was CRAZY and required we leave our sweet niece when visiting her and my family to say happy thanksgiving (they are headed out of town and we are staying here until our Pittsburg weekend – STAY TUNED) immediately is FRUSTRATING.  But saying to our minds: well this is our life cause we are illness folks is STUPID. This is the reality cause we hit a bump…. it doesn’t mean we give up and order all the chinese food and hide in the basement. Nope, it meant we stuck to our clean diet today (even though I wanted chinese food somethings fierce for the taste and to lick our # decrease wounds), it means we deal with the bleak moments and pop back as fast as we can, it means we use the tools we have this go round. As my girl Rachel Hollis says we can only control our attitudes and effort in every situation and today we give 150% to both…. even thought the reality of the medical situation isn’t better.


Supposed tos…. Shoulds… make me angry at this moment in time. Make me assume life will always be this way. Give me the pass for checking out and self pity and excuses.  When in reality it puts me in touch with the greatest reality of this life for every single human: life isn’t a magic genie that gives you what you want…. it just doesn’t work that way. There will always be bumps, sadness, bleak situations. There will be people that are in a better place than us, there are people in a worse place than us.  Yet the only thing we can control is us. Danny had a great day Friday: felt good, went to his personal training at the gym, coached hockey, and then we stay up a little too late watching a movie, and laughing. He reminded me that we don’t know the outcome here: but if we wake up in a matter of weeks and it is healed, but we can’t end up even participating in what we had planned because we gained those extra pounds during self soothing or loss that muscle tone sleeping away our fears…. that isn’t even CF’s fault… its ours because this time we know better.


Over the past two weeks you all have been so so kind and caring to listen to my fears, let me get out my raw honesty and returned it with love, support, warmth and prayers. And I think all of that has lead to this part of the journey: it isn’t better in the medical facts, but it is in our attidude, our spirit and what we are choosing to feed our brains. So thank you for helping to get us here and I am gonna say what my brain doesn’t always want me to say – but it needs to know: this totally stinks, but it ain’t over. The what’s ifs can buzz off cause we are going to beat this…. we are gonna make this work. And the whole “we have to prepare to be disappointed so we aren’t so sad” is crap…. I am not going to be disappointed, cause we are gonna find a away. Hear that brain – my heart and hope are here, so move those worries and make room all our big plans are still coming.


Wednesday we will return to clinic for a medial update and plan. Thank you for thinking of us.


Thank you so much for reading and remember to make it a great day!

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