Have A Little Faith in We

Last week I started a post one day after texting one of my good friends this picture with the caption – my car needs gas and an oil change and I don’t have time to do it as I race into work, hoping I make it on time #HotmessExpress.

From there the post grew to what I thought was a rather clever title – “Hotmess Express – All Aboard!” The post was going to review what we have been experiencing since Danny has gotten home. For starters this is new territory. We are used to at home IVs, we are accustomed to a few days of really tired to get over the hospital, we expect a house that has a lot of laundry and is extra cluttered from the comings and goings of my hospital life…. that is all very familiar.  This go round though we have some newer adjustments and it has felt like we are all on the hotmess express.

For starters we divide our world up to manage the day to day life. Danny works from home and has a flex schedule since his work is project based, so he manages the household: basic cleaning, errands, cooking, laundry, puppy dog, and the bills. As far as my duties – I work full time, manage a side contract business, keep our blog going, and do the big scrubbing of bathrooms and dusting (oh and Target – it is ALWAYS best of I do the Target runs…. Dan just doesn’t get it).  For the past few years this has worked pretty darn well (for any of you reading this please know we are talking YEARS of trial and error…. years) – a divide and conquer that only sometimes ends in battles about Dan not respecting my work hours and Dan’s frustration at my inability to cook anything. But this hospital stay Danny was asked how he fares with simple house work and we both got a chuckle, not really anything simple about it! That is when they said this will all have to change….

Additionally Danny’s health is so very different. The best description I continue to refer to is from a Hopkins Doc, “Danny is a really sick CF patient and a really stable transplant patient.” All of the things we have come to expect from tune-ups, IVs, days of unending rest, don’t buy him much more energy or strength like they used to do. Every ounce of his food and energy is going into breathing and that is going to wear a person out = he is a very sick CF patient. Throw in some blood sugar issues that require insulin…. extra blood thinners to ward off the clots during the IV time …. and a ticking clock of whether or not to list…. and you have a perfect storm for extreme exhaustion, frustration, and no guarantee that one hour will look at all like the next. But the reality that some days will still be really good = he is a stable transplant patient. A good example of what we are seeing: this weekend Dan participated in his hockey team’s training camp and really enjoyed it…. he also woke up in the middle of the night with a huge drop in blood sugar demanding action right away – scary. “Danny is a really sick CF patient and a really stable transplant patient.”

Everyone in our house is in the midst of major readjustment and we aren’t even really sure for what. Is this all just practice so when we list and have to manage transplant  curve balls we are ready? Or is this our new normal that we have to figure a way to successfully navigate to survive the coming months? It is really hard to maintain the laundry and your calendar when you don’t even know what tomorrow looks like…. and not in just the a-type Jackie way – in the real, raw life  way.

After getting through a particularly challenging and exhausting weekend, I looked at the draft of my  “Hotmess Express – All Aboard!” post and hit DELETE. My whole goal in that post was based only experience in the thick of it last week and needed to believe this was all a lesson in letting go and letting God. I was feeling frustrated that coming back to home was not feeling smooth, my car needed work, our dishwasher broke, I was trying to take on more at home and still be able to do what I had on my list – so this must be the lesson. It is time to not live by my calendar or be so hard on myself to be perfect. Phew  – there it is my lesson. Good thing I found it or all this shit would mean nothing. I had pictures of my messy kitchen and my calendar jam packed with notes and to do lists. If I laughed at myself and found the lesson then this was all for something and I could be at peace.

Guess what – that lesson meant just about nothing when I found the end of my rope on Sunday and it was not pretty. I had a melt down and I realized lesson or not, this sh*t is hard. This is not the first melt down I have ever had… and it most certainly will not be the last. But with a lot of my previous melt downs I come out the other end eventually feeling like a shook the frustrations free, licked my wounds and found a new way to conquer all. Guess what – that ain’t gonna work this time, period. After that melt down I wasn’t able to pick myself up again and tackle my email that has reached a level of scary red dot number on my iPhone….. it wasn’t going to be the thing that gave me the energy to stay up and tackle the laundry or spend another day scrubbing the house…. No, this melt down was the one where I had to cry uncle and be real.  We are in the most difficult and overwhelming moment we have ever been in and it is not an easy fix. There is no map or guide book, I can’t find one podcast on how to be the perfect CF/transplant spouse, and the Pinterest board for major medical moment quotes has yet to be discovered. This is life and it is hard.

Two things did happen as a result of this challenging weekend and shall we say “special” meltdown….. I found two stories of indescribable pain and suffering that spoke to my heart. The first was a podcast from Jamie Ivy’s Happy Hour (LOVE this podcast if you haven’t checked it out)  from a woman whose husband had an affair and the second was a blog from parents whose youngest son drowned in the family pool. These people had every right and reason to be angry, live with regret, and lose their faith. All three of them, strong people of God and living their life on a path of good – yet tragedy still found them. Different experiences and vastly different outcomes but all three had the same message – gratitude. These moments of pure hell had opened their hearts to God – and not because they wanted to or figured that was the best thing to do, it was for survival. The darkness enveloped their entire life- to carry on they had to have God. Circumstances that were the result of others’ life experiences or choices – destroyed these lives and yet the healing became all their own. When the world tells us to be angry or lash out…. that wife could have condemned her husband and been done with him or these parents chosen a life of depression and despair that divorced them from the rest of their kids, instead they all chose a journey of faith to understand and heal. All three were so open with having to survive their own worst nightmares to finding acceptance that can only be achieved through faith – it actually transformed to gratitude for what God had placed in their world.

This weekend I felt a tired that ached in my bones. I can’t think my way out of this one. There are no lists that will make this all work. And I can play the eye of the tiger and truly know that conquering is an option, but that won’t happen overnight. Those strategies are all destined for failure because they are focused on me. What I can do better? How I can be stronger? Why I should work harder… nope, right now I have to be softer. I need to be more gentle… I must be quiet and patient and let God work on my heart, because no one else is going to see my through this one…. and maybe even make us actually grateful for the struggles.

Both this post and my hotmess posts aren’t necessarily the happy go lucky person I am or strive to be at HALF. In fact I worried that maybe this blog is taking a turn to the darker side or worse – turing into one large Facebook ranting status – yikes. As a former copy editor friend wrote to me “I love your blog, but your grammar is killing me” I wondered about writing….especially this message. What about another weekend wrap-up or my favorite things posts that are really starting to back up. Or even better what about just a quick health update on Danny – that makes sense and is functional. The reality is there are other CF families who will face these moments in the world. There will be some caregiver somewhere who longs for sleep just to turn their mind off for a little bit – so for them I write – you are not alone. For the Jackie and Danny who I hope are telling this story to set up the stage for a huge triumph and testimony to God, I have to write. So that I am  honest with where life truly is, I had to write this post. This blog – with all its bad grammar – is my witness to the story and although not pretty or always motivational…. I am proud I am able to write it and continue to live it: searching for gratitude in this perfectly imperfect way.

Thank you so much for reading,

Jackie