I think I was naive. I was naive to think that at 60 days we should be good to roll. Now not dumb enough to think that we could be completely ready to go or Danny would be ready for a marathon – but if I am being honest, I was confident enough to think we will have it under control. At this point in the recovery we would still have odd schedules or be a little absent from regular life…. but besides that, I would be kick ass at managing our life at home, coordinating with our friends, getting back to work, I would be running a few miles a week, we would be blissfully happy in the place we find ourselves – healing nicely with new lungs. The dreams that had so suddenly felt so out of reach – careers, kids, travel – suddenly seemed possible. Hadn’t we traded our fears and inabilities for new lungs? For years we had been playing the game of too sick or too well…. wasn’t our time done? We had officially signed onto the choice of life……
Before I go any further I have to acknowledged I am not the one who is sick. Just in case you didn’t think I knew that…. I know it. I swear I know it better than anyone. As I watched Danny nap yesterday, because he was too weak to get up and even pack a bag for the potential for him to stay at the hospital, I saw his arms shake, his legs wobble, his whole body fight against letting him have any rest. The week before when I was gearing my whole work week to have a awesome week where I get all caught up – I start my new program that is the type of thing where you actually get to say I am doing what I wanted to do and not just waiting to figure out what I want to be when I grow up – I had to write my one thousandth email about ER hours and an ambulance ride…. and that I won’t be in ….. As Dan locks himself in for an afternoon in the bathroom, I am asked to exchange out bags just in case it comes from all ends. Picc lines and finger pricks and various colored snot is part of my love story. If you don’t know that I am fully aware that I am not the sick one, I think you need to read the history of this blog.
But here is the real and raw and straightforward deal….. I might not be sick, but I am trying to live in both worlds: the land of the living and the world of caregiver and there is no handbook – period. Most caregiver stories for a wife start out with the same reassurance “you are still the same couple before your husband got sick”….. “your marriage is still yours, before, during and after disease XYZ”. Where is the caregiver book for those of us who signed up for the sick roller coaster that had been going long before we arrived on the scene? Marriage was the same before and will be after…. well my marriage knows nothing else….. so decipher that one for me will ya? Often I wonder if people find my ability to find the silver lining or look for the hope repetitive, or even weak. The stories I must have to tell myself to get to tomorrow are tall. But tonight as I read a story of a mother who carried her dying in-utero daughter to term, she mentioned the desire to hope and how much we as humans want to so badly. We are wired to live and breath for hope. Hope for tomorrow, hope for healing, hope for a fresh start. Hope – it is what takes us from point A to point B. For so long I have felt that is what made my life make sense, I just loved hope…. I could hope better than anyone I knew….but what if it isn’t enough?
This period of life … at time that hope was answered – our miracle of life, yet hope was shaken…. taken almost to the point of shattered and the emotional journey it presented hard. So what the heck am I to do with that? Being rawly honest is scary…. being resentful is ungrateful…. and giving up is weak. For some of the hardest points in this trial, we have already come out the other end enough that my faith is encouraged to remain strong. But even in knowing it is strong, I am still a person that calls out to God every freaking day for help, patience, strength….. my hope has to be intertwined in something greater than me at this point to keep living. But when I have had a chance to lift my head and look around – in real life, in my circles, in my blog world I have found there are so many of us hurting and losing hope through all different scenarios in life. Hope gets replaced so quickly for each of us….. and it can look a lot like exhaustion, pain, anger, loss, fear – that I felt compelled to write this post.
Sure, I love the stories that are told of painful loss, but that hope is eventually restored, but I often wonder about the middle of the story. What was it like on the Wednesday that all of the balls they were juggling that were as innocent as errands, your job and clean underwear along with your life criss – anxiety, sick parents, dying child, debit, CF spouse – came crashing down??? And I can almost promise you the ball that makes you lose it isn’t going to be the one you think it will be. Yesterday I was warned about the potential of Danny going into diabetic coma and how close he came this week (twice)…. and yet the thing that pushed me over the edge – my bra wasn’t clean. Yup – real. So I had to wonder, how many of you need to hear from those of us in the middle? How many of us are in the middle together?
Specially for the CF spouses, I want to say this – you gave your life, all of it to a person with a thing that you were never going to control. You would never win over the chaos….ever. There are days you feel like its all on you to figure out how to manage it and your scared/angry/sad, yet you hate yourself for that feeling that because you aren’t the sick one. You married into family who has had years to determine the management of their chaos and as you assimilate it will feel like wearing foreign skin. Since you aren’t the one who is sick – are you the one who is supposed to figure out how to make it all work (let me run out and grab us the american dream real quick)? You will go through a life of people looking at you with loving eyes, but always a slight hint of confusion….why would you choose this life? And when you are having a really good day – they will ask you out loud. But you aren’t alone…… and for doing the best you can, you are doing perfect.
For the rest of you all that are just doing life….. my heart goes to you too. I pray the people that need to hear this message tonight hear it. For those who are wondering and dreaming and pleading and praying…. yea me too. But its OK to live in hope. I do… and so far God keeps giving me each and every day to try it again….. don’t be afraid to also live in reality and say its tough. Just don’t let hope wander away….. not as a crutch, but as your wings.
And if you are looking for an extra boost of hope here are some of the resource helping me:
Interior Freedom (thank you Dad!!)
Thanks so much for reading and remember to make it a great day!