Have A Little Faith in We

My word for 2020 is joy and to think I chose it with a whole bunch of different reasons, and yet the way life has demanded a focus on joy for the world has been crazy. Who knew??

In 2019, my word “hope” played a huge role in my life. Choosing that word, I invested in learning the true meaning based on my faith, discovering ways to cultivate it in my world, and then coming to experience its presence and power was all more than I ever expected. In the name of Hope I spent time, energy and effort on ways to improve how I viewed and participated in life. Motivated by hopes way of thinking, Danny and I went after opportunities for new jobs and took big steps in our infertility journey. When things were confusing or not looking like I envisioned or feeling “unfair”, it was hope that I called to mind to give me the strength to fight the desire for giving up. My year of hope was incredible: from the simple act of studying it to seeing it play out in my chasing after those things I desired – so I also wanted to choose my 2020 word very carefully.

2019 has been the year that I learned what it meant to have hope and actively live it. So maybe it meant 2020 should be about my perspective when living in the world created out of hope. Different from last year, I started this year in my dream job and expecting a baby. Yet we also started it with Danny not feeling 100% and the uncertainty of so much change. It called to mind the thing my dad would always say to us growing up: you have to find how to be happy despite your circumstances (He would specifically refer to the apostle Peter who was happy when on top of the world walking with Jesus and when in chains while in prison). Hope had shown me the power of possibility and it resulted in many amazing changes, maybe 2020 was learning to truly live in those changes, even if not exactly what I had thought they would look like all the time.

Joy is defined in Christianity as the experience of true happiness based not on our current state of being, but through our relationship with God. This means we can be happy in all circumstances because of God. 2019 I had achieved so much of what I had wanted to change, it can be easy to convert that into a need to strive for perfection. This could mean that I need X Y and Z- to be exactly as I envisioned for things to feel good or to enjoy life. When in reality, I needed to enjoy these new blessings and all that we have been given, no matter the circumstances. My mind went immediately to being a new mom. There would be plenty of times the experience won’t go the way I had thought, and yet I can’t let that steal my joy of finally having our daughter. That means if I base my joy off of my relationship with God, what’s happening in my day to day world won’t be diminished when it’s different than I thought. Yup, 2020’s word really needs to be joy I thought…. and boy had that tuned out to be true in ways I never even imagined.

So that brings me to now- the sharing of my word for 2020 in April. Living a life that joy is being threatened at every turn – and not just for me but for the world. What has taken place since January 1 has left me clinging to joy so hard it has been impossible to write about it or share it – just had to live it the best I could.

Looking back to the start of 2020, there have been so many lessons in Joy and here are the ones that have stuck out to me:

First lesson in joy: In January Danny would take a significant turn in his health journey. We would have a first ever 911 call and eventually learn that our plan of making these lungs last as long as possible (agreed upon in October) had come to the end. Danny would need new lungs to survive and likely live in the hospital until they were received.

The Joy: thanks to my current job and the help of our parents, I was able to spend the final trimester of my pregnancy traveling back and forth to Hopkins to be with Danny, we had the option of a second transplant, and we had an amazing medical team supporting our whole family. These things sorta just happened/got accomplished, yet when I truly think about them all – these are HUGE blessings.

Second lesson in joy: As Danny continued to get worse he brought up the idea of hospice. How things were going, he had to compromise so much of his dignity, freedom and recognition of self, so we looked into this other option, discussed it with our team and shared the idea with family. This was about the furthest thing from what I could imagine as a possibility for our lives, but watching Danny try to live like this and asking him to fight for more time seemed selfish. I wanted more than anything for Danny to feel safe, supported and loved. We would be a couple and soon family no matter how it looked, so I accepted this possibility and walked with him through the option.

The joy: To live through conversations like these you really get to know what you mean to each other. Danny said he was at peace because he has lived a full life to 35 (far longer than predicted with CF at birth) with a strong marriage and now having a daughter. Knowing we had built that life together, I felt peace too that we had given him so much to enjoy and our lives had been full of so much happiness. There aren’t words to really describe these moments but it was tragically beautiful and some of the most precious of our lives together.

Ultimately Danny choose to stay the course and a few med adjustments brought back some stability. We found joy in the rough and God brought us some amazing goodness on the other side of the hard.

Third lesson in joy: Danny would be able to eventually come out of the hospital and continue the wait for organs at home. But after a few trial and errors and additional 911 calls, we would choose to have him live with his parents where he could have 24-7 support by his parents. At 35 years old, weeks from welcoming our new baby, after we had just overcome a really hard bump together we had to make the difficult choice to live apart.

The joy: this was hard and not what we wanted at all. But if 2020 had taught us anything- letting go of expectations and just enjoying the good when we have it is important. Danny was stable enough to be out of the hospital, I could stop lugging my very pregnant self to Baltimore, and we have the help/resources to have Danny be cared for at home. Plus this meant Danny could be at the hospital with me to welcome baby girl. Joy in challenge and good times is what we were practicing.

Fourth lesson in joy: the corona virus hits. Life has officially turned insane and full of unexpected for everyone. This virus sends us all home to “shelter in place”, stop life as we know it and most tragically take precious lives. With the added concern: most dangerous for those with comprised health. Our dream of Danny being there for his little girl’s arrival- gone. My mom having to leave her life and home to move in with me, while my dad had to manage working from home (before the rest of the world) to keep things going there was necessary. Any sense of normalcy lost, just as our lives were about to change forever.

The joy: 2020 has already played out full of unexpected and changed plans we no longer able to mourn any sort of loss and had gone into survival. Focusing on what good we could enjoy and the importance of continuing to just walk forward. Because of all the struggle, this sort of situation could potentially have caused Danny and I to divide, fight, be frustrated and take frustrations or fears out on each other… instead we learned to be each other’s cheerleaders from afar. We had never been stronger and were able to see the power in the final moments before we embarked on parenthood by experiencing the truth meaning of unconditional love of parents as our own took care of us, letting their own lives be disrupted.

Final lesson in joy (for now): officially living apart. There were many moments that required unexpected acceptance and choosing joy when welcoming a baby during a global pandemic and Danny’s health declines (including Danny having to wait two weeks to meet her and just as it was about to be meet and greet day, he was admitted back to Hopkins)…. but I am guessing you have already gathered that from this long post. So I have really focused here on the big waves of change and necessary lessons in joy. Right now one of the hardest and most impactful is that we will are living in two places the majority of the time, while being new parents. During the week I am with my parents, sister and niece living in Charlottesville (about 2 hours from where I normally live and Danny is with his parents), then on the weekend I come to stay with Danny and his parents. This is hard on many levels, but also necessary for this season.

The joy: we have three homes full of love, warmth, safety and many luxuries to enjoy – something many folks in this world don’t even have one home. Our little girl has no idea this is strange and is just surrounded by love and support. While I navigate postpartum hormones mixed with fear for my husband, how much I hate uncertainty (yup… still… ), and we watch the world still navigate this global pandemic- I can balance between two households and not have too much emotion explode in front of one family. Plus Danny and I are constantly pulling our focus back to the positive of our current life… not the frustrations …. to keep us a team and positive. These are the moments I feel the most like a family, even apart.

Initially I thought I had chosen joy for 2020, but the reality is it may have chosen me. There may not be a better word for this unique time and I am grateful to have a focus, in this world full of uncertainty. Oddly enough I have not had as much for the chance to study joy like I did with hope…. but I am certainly learning about it “on the job” so to speak. But as this new normal sort of sets in I am starting to struggle a bit and will need to increase my relationship with God to have this true joy. And oddly enough with so much of the world struggling, there are so many resources to find Him and discover that true joy.

And I will end on this note of joy….. the blog. Right now our lives are so unique (join the club I know), and I want to be able to capture life with our little lady, document the next transplant journey, keep family and friends up to speed and selfishly help me process all of it…. the blog feels like such a powerful tool. Plus I can’t leave the house much, I am not able to be there as Danny’s support as often this time, and now that we have reached the first month with the baby, I think I might have some sort of handle on this mom thing (HA!)- so I think it’s officially time I can return to Have a Little Faith in We….. and I am grateful for those of you who choose to follow us.

So until next time….. thanks so much for reading and remember to make it a great day!

Jackie