A year ago this week our ordinary pregnancy became anything but. Now though in reflection, it led to some extraordinary things and today we celebrate unabatingly Townes reaching 6-month post-transplant!
While we were in the hospital we were connected with a social worker. At Vanderbilt (maybe at other hospitals too but I can only speak to our personal experience with Vanderbilt) if you are facing a long-term stay, you are connected with one. For us, she was an advocate (remember when COVID first started and the hospital was changing policy every 12 hours), she was a familiar face, she was a friend who popped in to say hi. Sometimes she brought us gift cards (we finally used some we received this past Friday! You may wonder why it took so long, but you get 3 guesses, you likely only need one…and no Townes is not the reason, ha)!
Part of her job is to connect families with different programs who strive to assist families like ours and at the very least lift a burden if possible. We were the beneficiaries of a gas card and grocery card from a non-profit called Enduring Hearts. The further out and more removed you become from the days spent at the hospital the memory of the emotional and physical toll lessens (thank goodness). On the days of Townes’ Transplant appointments, I usually leave feeling drained – not because we received negative or bad news but just from being there. That’s when I am reminded of the months earlier this year, how our week in the NICU seemed like a month and our 2 months in the Cardiac Pediatric ICU felt like a year – time seems to stand still in the hospital.
A couple weeks ago at one of his appointments, our doctor asked me if Scott and I would be interested in becoming personally connected with Enduring Hearts as this organization is striving to expand its community reach.
We have now had the pleasure of connecting with the CEO of Enduring Hearts and our hearts and minds have been opened to the amazing work they are doing which reaches far beyond how we were impacted in a small way during our stay at Vanderbilt.
Enduring Hearts was founded by a family who were on vacation in the most “magical” place on earth …. you guessed it, Disney when their youngest started having trouble breathing. After a trip to the doctors which sent them to the hospital only to discover their three-year-old daughter was experiencing heart failure. She ultimately became a heart transplant recipient and her parents founded this wonderful organization because as we have already discussed Pediatric Heart Transplant is still new medicine.
Enduring Hearts is funding amazing research projects to continue to innovate, to discover more about Pediatric Heart Transplant longevity, to detect signs of rejection and ultimately prevent it.
From an outsider’s perspective, you would assume that funding for this research would come directly from the American Heart Association, but you would be wrong. These two organizations are currently working on their first potential project together. As a reminder, the first heart transplant was in the early 80’s (so while new medicine, I was born in 83, you do the math).
My main takeaway from this first call – my son, Townes will be a direct beneficiary of the research that this organization is doing and all of the doctors who are partnered alongside them with their passion for these children. In my mind, they are HERIOC.
There were many things that stood out to me during this call but the main one: their MISSION as it was communicated to us.
“The mission of Enduring Hearts is that every Pediatric Transplant Recipient would experience a lifetime of Ordinary. Graduation, Marriage, Children, and even taking care of you when you age”
I have mulled over this statement like spices seeping in a red wine these past two weeks. Why did it stand out to me so?
Last August, Scott found a used Bob Stroller for me. If you are not familiar with the Bob Stroller, it’s a running stroller. When I first learned of Townes’ pending arrival, I told Scott I had to at least have a running stroller so I could take him with me, what fun!
But then, of course, we received his diagnosis. Something certain become uncertain.
Our faith became the fuel for our Hope.
Hebrews 11:6 puts it this way, “And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists and that he rewards those who seek him.”
Now the Bob Stroller I was once so excited about sat collecting dust, crickets and I am sure spiders in my basement. It signified something I didn’t know if and/or when I would use. Something so ordinary. Something, maybe, I would have taken for granted before.
The word ordinary, according to the Webster’s dictionary, simply means no special or distinctive features; normal. But what if what you may call ordinary, to others is representative of something much deeper and not ordinary at all?
What if you saw your relationship with Jesus through this lens? Proverbs 21:20 says ‘Precious treasure and oil are in a wise man’s dwelling, but a foolish man devours it.”
What if our ordinary moments are actually where the treasure lie? Can we slow down long enough to appreciate them, to find the joy in the them and ultimately see Jesus in them?
Weeks ago, before we had our first introductory call with Enduring Hearts, I signed up for their virtual race to be completed between the 13th-29th. In short, I signed up to give back to an organization that had given to me. Little did I know just a few weeks later, I would have a new passion and endearment to them.
And so, on Saturday, I decided there would never be a more appropriate time to do something that on the outside to anyone who passed by would seem ordinary. We pulled out the Bob Stroller, dusted it off, and loaded him up.
As I stood in our driveway with Townes strapped in and Luna hooked around my waist, I looked back at Scott standing in the doorway. He seemed to motion to me with a gesture that suggested, “go on already. I want to wave you “good luck” as your constant companion at any race, but I don’t have all day, COFFEE!”
But I couldn’t move, I was cemented to the pavement. I was too overcome with emotion. My feet felt like lead weights and my breath shortened as I looked down at my son. My heart was overwhelmed with an immense amount of gratitude that our first time using the Bob Stroller, something ordinary, was for something of significance – something that would directly impact not only my son but many other children.
This race wasn’t about setting a PR (personal record) or competition or just participating in a race (thank you 2020 for making this much more difficult) – this race was about making a difference, about impact, and about giving other children, like mine, a chance at ordinary.
But as in all things, there was more to what I was experiencing. I was overwhelmed with a beautiful picture that the Lord can turn something so Ordinary into something Extraordinary. And how does he do it – by using you and me.
He has given us gifts and talents and treasures. (See Romans 12)
And with these gifts and talents and treasures, we work together as the body of Christ to advance the Kingdom. (Colossians 3:23)
When we experience loss, isn’t it the Ordinary moments that become the most devastating – dinner at the table, walks around the neighborhood, tradition of Saturday morning coffee runs, the shared experience of watching a team you both love compete, the missing dirty clothes in the hamper?
What if we could shift our perspective on 2020 as a hard and difficult year that has created many ordinary moments to believe that one day we will look back and remember these moments as extraordinary – more time at home, more time invested in our children, more time spent outside, more time appreciating the simple moments with friends or a conversation with your neighbor, the simplicity of a homecooked meal, the time spent reading a good book instead of scrolling social media, more time to look back at old pictures, more crafts.
What I know for certain is that there is family out there that probably views themselves as Ordinary, but they are NOT.
This family experienced a heartbreak no family should, and these parents said yes to a question no parent should ever have to answer; they gave the most priceless and precious gift –
They gifted, not just Scott and I with many, many, many ordinary moments but they gave this gift to his grandparents, his aunts, his uncles, his future friends, his future teachers, coaches and mentors, to his future wife and ultimately to his children. They changed a generation and they changed people’s lives. Impact.
This family is EXTRAORDINARY!
My perspective is different now, I see these moments from a different vantage point – they are not ordinary – they are EXTRAORDINARY.
What if we all started to believe that as ordinary people, we could do extraordinary things because of whose we are and the power of who lives inside of us?
This last week was filled with so much. We had the pleasure of zooming with Dr. Boo (a nickname gifted to him by his earliest recipients families) who serves on the board of Enduring Hearts and he founded the Pediatric Heart Transplant program at Vanderbilt Children’s along with his fellow at the time (one of our doctors).
He has so much passion for his children and for the research. He has a strong Why and we appreciated his honesty and candor about why he picked this field. It was a great reminder that so many times a strong Why drives you to success. And he confirmed what I already knew, that if I or Scott had been born with Hypoplastic Left Heart Syndrome, we wouldn’t have survived. Dr. Boo is an asset, and I am humbled and honored to have spent time with him on Friday.
Visit, https://enduringhearts.org/, to learn more about Enduring Hearts and consider partnering with them in the future. Scott and I look forward to becoming involved with their mission.
And then after our run on Saturday, we introduced to Townes to his first football Saturday, what a joy! So let the celebrations continue as we sing so many praises today for our 6 month mark with a healthy, whole, and joyous little boy. (2 Samuel 22:50 & Psalm 57:7)
With love –
Maleah
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