Have A Little Faith in We

Hello friends and happy November! My apologies this post is more than a week from our last one, but if you follow us on social media you know we have been a little busy and my hopes of keeping up with blog just weren’t realistic – such is life. So today I have a check-in with whats going on in our world.

Last week we met with our Hopkins team on Wednesday and learned that we are beginning our descent into destination transplant. This is a very delicate time and I appreciate your patience while we digest this a little on our own. HALF will be our primary tool of communication, so I will provide more medical details in the coming weeks – but for now the primary message is: TIME TO SIMPLIFY. Yes – that sounds a little odd following the sentence where I tell you we are getting transplant serious, but the truth is to have the space, energy, and clarity to take this journey on the theme of our world will be simplicity.

Oddly this way of looking at life is freeing. There is only so much time in a day and only so much of ourselves to give, yet we all seem to demand more. My fellow a-type, overachievers hear me?? O yes…. we can do it all – just gotta put our minds to it! Well I have been on a journey for several years of trying to accept what is realistic soI can stop doing 50 things just sorta OK and learn to do a few things well. The report of that effort has been not so good….. so I guess this new life, where I am going to have to do it could be a good thing.  So here are a few ways we are trying to simplify.

First: what can you throw money at? I know, I know that sounds super cavalier and a little spoiled/unrealistic, but when you give it some thought it really makes a lot of sense. I can come up with ALL the money in the world and none of it will cure Danny’s CF. I can’t hire someone to replace me during important family moments. There are certain things in life money can’t fix, so why not take advantage of the ones that it can? Thanks to the help of family contributions and the charity fund our friends setup, we are able to use money to solve issues of transportation, errands, house cleaning, and housing when in Baltimore.

For me there is a lot of guilt associated with this approach. Isn’t house cleaning for those who have worked for many years and earned the right to not mop on a Saturday? Errands…. what am I wheelchair bound? I can ran errands. I will just keep a running a log in my car and every lunch break or free afternoon I will try get them done.  Trying to do it all left me tired, sick, angry and with about an inch of patience that was normally eaten up by our demanding puppy. By the time Danny asked for help making dinner I was a fire breathing maniac who wanted to rip his face off. Lovely – right? But with my stress induced emotions, it was sorta true. So thanks to a little help and encouragement we threw money at a few of these items and I am happy to report the return on investment (return of my happiness and only slightly OCD ways) it was well worth it!

Second: clear the clutter and to do lists. We have a little bit of time before we have to list so I am taking the opportunity to clear the clutter and get real with my to do lists.  A bag from last Christmas has been siting in my loft since last January with the Christmas presents I wasn’t sure what to do with – including three calendars (my people know my love language). Well in my effort not to waste, I saved those calendars until today…. November. They sat in bags in my office causing anxiety every time I looked over and said “I gotta clear those bags” – when after 11 months of non-use I could have just trashed them when I first realized there was no need. Its time to stop adding guilt and “what ifs” to items, rather make a decision and move on!

My to do lists aren’t quite so cut and dry – they are necessary to keep my brain in functioning order, but there is a better way to manage them. Instead of never-ending lists that “clean the closet” and “brush the dog” shared the same amount of space on the list, yet one is a few hours of work and one is 15 minutes, I needed to adjust. So first things first I cleared off all the things that aren’t necessary to right now. Second I am taking the big items that are important to right now and breaking them into bite sized pieces.  My summer closet needs to be transitioned and I have been waiting since mid-September for a weekend that I have a chunk of hours to do it. Not gonna happen….. so instead I am breaking it into 15 minutes bites over the next few weekends. I feel like the dial is moving…. but not so much pressure to get it all done at once.

Truth be told – giving myself the freedom to be rid of the clutter or address a to do item over time provides a few more wins more often. Yes, striking something off the to do list or moving it out of my eye sight provides this sense of relief and calm for me. Knowing this about myself, I am now offering a few more chances for that to happen regularly.

Third: don’t forget this is just for a time. Yes the transplant adventure could last months…. we pray we aren’t still at this point next year, but never say never. No matter the length of this experience – it won’t be forever. Someday we will wake up and this will all be over (AMEN – thank you God!!!!) and that is when we will need some of the pieces of our regular life still in tact to return to. For me this is my career. To the best of my ability and with the greatest of intentions, I will continue to work and invest in my current role and my future endeavors. My professional life is source of pride, excitement, happiness, friendship, and income for our family. I may not always be able to give 150% like I am used to in my job – but just like my to do lists – I won’t let the opportunity to move the dial on work projects or plans when I can (even by 15 minute increments) and intend to keep that ball high in the air. The same goes for Danny’s coaching. As he plans to be the next Coach Bombay – he has to keep his finger on the pulse of the DJO Hockey Team! All joking aside, these are the parts of our lives that we really plan to take into post-transplant life, so keeping them as a priority as long as we can is the plan.

Finally – the best shift of them all…. opening our front door! You heard it here first folks…. I am going to tell my desire to be the hostess with the mostess to sit down and shut up! Our local friends have started an effort for Saturday lunch visits to keep us laughing, offer to help, and best of all to remind us that we are walking this path with a lot of folks with us! So I am promising toilet paper and ice cubes and the rest folks can bring their own! And we are blessed because everyone has been happy and willing to do so…..

So here is the simplicity of life that we are striving for around here and this weekend was a great first test as BOTH Danny and I were down and out! On Friday I had to have surgery to remove a few lumps that are not supposed to be there. All went well and the lumps were benign – but I was couch bound until really Monday afternoon. This meant asking for help from both sets of parents, our first set of lunch visitors saw me with dirty hair and even messier floors, and both Danny and I had to realize that help and simplicity aren’t really going to be just a choice, but a requirement. What a way to welcome this new chapter!

Life is full of lessons and some of them you have to learn in a BIG way…. this time in our life will be filled with a lot, but at the root of it all will be learning to accept help so we can slow down an actually enjoy the time we have with each other and our loved ones. The reasons for this break of sorts is scary and serious, but if we can learn to live in the moments I am going to guess there will be some really special experiences too. So if you too are facing a really tumultuous time…. join us in simplicity!

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

Jackie