Day 49 of Bardos: We Did It.

We watched a lot of sports with #LukaTheLion  both at home and at our hospital home. Arsenal, UNC, US Women’s Soccer, Polska and France national soccer teams, Cubs, Panthers, and Clemson by osmosis. It’s funny, for all these teams have been quite successful recently. Sports helped us all pace ourselves on a daily basis — “what’s next?” was a common phrase asked of each other when one sports event was wrapping up. Sports helped us focus on something that was also outside of our control, but asked us to temper our feelings. Sports helped us feel a sense of belonging to something bigger than ourselves, a community all pulling in the same direction – for better or for worse. Sports gave us a short term future, for that season it was a weekly event. Sports gave us next year if it wasn’t ours to win in the end. Sports helped us practice that feeling of hope and faith that someday it could all happen our way. So, as you can see — we share a lot in common with the billions of sports fans out there in the world. We transpose our feelings for what’s happening in our own lives onto the teams we cheer for. We extrapolate meaning of what surrounds us by using sports metaphors especially as a way to connect with others on how we feel.

We were told many times by medical providers that having a child born with a rare primary immunodeficiency disease, then having a bone marrow transplant, and subsequent complications was much like a triathlon. We used the metaphor wildly through the journey. So when I was asked today by a sweet soul how I was feeling as this is the last day of Bardos, I replied without thinking with an extension of our on-going sports metaphor — “Like I’ve ran a few marathons and there’s still more to run. Breaks needed at times, but mostly with inspiration and wind behind my back, especially with a lot of souls cheering us on.”

So, it’s true you see. This metaphor of sports is also the same for this community of a little secret Facebook group that started with 30 people a little less than a year ago into what it is now. Never in my wildest dreams did I think that an idea to share Luka’s sweet soul and personality, despite his extreme disease and treatment would lead us through this journey. Counting down and up and then up again the dates, having something specific to look forward to on a daily basis helped run this race. I always just wanted to honor Luka, and Maia, by writing how they and we traveled through this triathlon and its aftermath. I wanted you all to see especially how Luka always did his best no matter what was handed to him. And so my writing was a lifeline between you who care and he who received that love one way or another. Yet, it was perhaps me who gained the most in it all. Writing helped me process all the training, endurance, knowledge, and so much more that went into pacing myself in something that I still have a hard time grasping completely. Believe it or not, but I still have pinch me moments and not in a numb or denial kind of way — but in a “wow, this all happened, is happening, and we are here to tell it.” Being Luka’s caregiver coach was the greatest honor I could ever have after being a mother. And again, I learned the most cheering him on and telling you about it. For this, thank you for your support, for cheering us on always. For making this triathlon and beyond possible. I see your comments and messages much like signs along the way — making you smile, feel inspired, and keep running.

Regardless of the outcome of the triathlon, I’m the most proud that we all tried our very best. We were watching ice skating tonight and Maia was very interested in Maia the ice dancer who skates with her brother. They did very well and the crowd gave a standing ovation. The judges gave some of the highest scores in history. They exceeded expectations by trying their best. Our Maia was convinced that this ice skater Maia was going to win, and after we watched the next pairs, we talked about how even though they had tried their best — sometimes your best isn’t always good enough to win. And that’s ok. It’s yet another extension of how proud I am of Maia who at 2 years old loved her brother with all her soul, not even completely understanding why he went to the hospital and clinic so much. As a 3 year old it sank in yet she loved him even more. As a 4 year old she cheered him on as he got a bone marrow transplant and was hospitalized for months at a time. She never got mad. She never got jealous. She only wanted him to feel better. She held it together for her first day of school without her family all home. And so much more. In all of Luka’s triathlon of life — I seriously cannot be more proud of our children and how they did their very best. Even through that last finish line and beyond.

So, it may have been fitting that on this last day of Bardos to honor Luka’s soul as he goes through a re-birth, as do we, that we went flying down a mountain (hill) on a sled this snow day. Luka was born when there was snow on the ground here after the craziest winter imaginable. I had visions of coming down a mountain as his life was coming to its finish line here on earth. Remember, I just didn’t know which home we were going to — yet I must have deep down. We were just going to different homes when we came down to the mountain. So, today, it was the three of us sledding without abandon, fearless really — perhaps we are too comfortable with UNC hospital to care if we end up there — and we went flying down the mountain on sleds, trying our very best to live life to its fullest.

Just like Luka — lets all always remember to try our best, for it doesn’t matter how we finish the race. Fitting that my first words after I finished reading the last line of the King of Prayers tonight was “we did it.”

We did. Now let’s see what the next triathlon has in store for us.