Life is Brutaful

A Baltimore Date while visiting Hopkins
December 2018
Last year at this time I was in a Daring Way Coaching Session with Jeanette Engle . It was one of the best things I have ever done and if you are local I would really recommend you check it out. One of the phrases we used a lot was that life is “brutaful”- brutal and beautiful all at the same time. Since that concept entered my world I have thought about it a zillion different times. So many things we face have immense power to bring beauty and pain into our lives and so often its at the same moment. Through working with Jeanette, some life experiences, and trial and error I have found the best way to manage those experiences is curiosity, stillness and gratitude. Curiosity to really dive in and find the true source of these emotions. Stillness for both processing and creating strength for the experience. And gratitude because in the end you will realize how important the experience as a whole was, and why both of those emotions are equally responsible for its powerful influence. Over the coming days we will be entering a lot of CF life so I thought it was a good time to acknowledge how brutaful CF life can be.

 

Yesterday the DC area was expecting a bunch of snow to arrive early this morning. The threat of this weather mayhem was leading folks to worry about making it to their surgery on time and opting to cancel. Dan’s surgery is set for next Monday, however it is a bit fluid since he is being squeezed in. So they called to see if maybe he could take one of the for sure spots that was being canceled due to the snow. This was all at about 11 AM so Dan called me at work and began the potential scramble: what laundry was done, where did the dog need to go, what household things need to be done, what plans cancelled, make a hotel reservation…. and as my head began to get dizzy with the change of plans, I comforted myself with the thought of a nice cup of coffee and evening drive with Dan up to Baltimore. I mentally packed my cozy flannel PJs and looked forward to movie at the hotel just hanging out with my guy. I wondered if we could get up there in time for our favorite little mexican spot and a tasty dinner.  All the worry of surgery being moved up, life getting chaotic early, could we get ready in time, was pushed aside for the enjoyment we get when little moments are carved out for Danny and I to be a couple admits the sick life. And how strange it is that I look forward to it…. yet it’s a direct result of the very thing making our life such a mess…. and there it is: this life is brutaful.
Our First Real Picture Post Transplant
December 2016
Recently an interview with Lea was replayed and she was talking about how clinic days, although not always full of goodness, were little built in dates for her and her mom to catch up. They would go to the appointments and then usually enjoy some lunch. During dating Danny and I looked at tunes ups as an excuse for movie marathon and take out binging. In fact there was a sort of odd comfort in the fact that we had a pattern for managing it and these regular moments of hiding away from the world. Now I don’t mean to make light of this life… at all. If asked, we would trade these moments for having to learn work/life balance like a couple who are healthy and working. But since that isn’t our life, and sick existence is the world we have only recently returned to I have been noticing what brings us comfort admits the discomfort.  How as humans we are resilient and have learned to find a version of our own normalcy….. and how quickly we can return to it.

 

Danny and I both agree that CF as part of our world has been the definition of brutaful. We are blessed with amazing experiences, getting to share our story, learning about others’ journey. And there are conversations and moments and experiences that most couples our age have not even begun to imagine, let alone face, yet it has made us work hard for an exceptional marriage. We have front row seats to miracles, but there is a price. Not being able to breath is normal in our house. The uncertainty for our future comes into question on a regular basis. There is a certain careless abandonment for living life to the fullest we will never know. And we have watched what this disease does to couples, families, and how it takes lives. The delicate dance for living this life is actually similar to the symbol often used for CF, a rose. It is beautiful and with a most glorious fragrance, but those thorns can cause great harm, and often before you notice how close they were on the stem: brutaful.

 

This week we are approaching this surgery a little different. I will be there for surgery day and the following day until Danny is out of ICU – but then I am heading back here and Dan’s mom will stay with him. Right now I am preparing to start a new job (more to come…. we are SO excited) and need to wrap up my time with my role of 4.5 years. The first weekend of March I have the honor of speaking to CF families and I need to be ready to go. We have other plans that all the balls in the air need to try and stay there, which means I am going to focus there while Danny focuses a little more on his own for the health journey. This is a choice we made together and we believe is the best for our future ….. but I can’t help but worry how we are leaving our normal approach of actually in the CF life 150% together. And strangely it is making me sad to miss out on how we normally manage this life. It feels like an end to a chapter in a way and just has me thinking how brutaful life has truly been for us.

 

If you are facing something that feels painful, I encourage you to dive in and see what the positive side may be. What could be the part that will be beautiful as a result of this painful season. It doesn’t make it any easier, hurt less, or an excuse to sugar coat it…. but it just might make you feel a little different about the season. Or help you embrace what tools get through it and how to be grateful for them. CF life has given us a lot of messy… but I am so grateful for the goodness it has brought into our world too. Life truly is brutaful.

 

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

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