Two years ago… It was two years ago we got a second devastating diagnosis and were told Ely was also going to have to fight the same disease his brother was fighting. I had sunk into a puddle of all kinds of mess that day trying to absorb what that news really meant and how we were supposed to survive. I remember Danny and I calling all the family all over again, delivering the news all over again. Texting friends to say our greatest fear was real… that BOTH our boys were affected. And then Grandpa Eddie got home from work (we were in Idaho on vacation visiting when we got the call) and offered Starbucks Frappuccinos.
And we took a brave step forward, fraps in hand. And I learned the gift of living in the moment; truly absorbing what God was doing in and around us right then and right there, a place I called “This Now” land.
I can’t believe we are a solid two+ years into this Batten journey. Many have described our family as brave, courageous, joyful, inspiring, warriors. I don’t write this list to toot our horns because even as I have journeyed this crazy way, I can’t muster up the energy to embrace those descriptors as something I have managed to accomplish. As I pondered on the last two years and how far we’ve come since Titus’s diagnosis (April 7, 2015) and Ely’s (June 25, 2015) I am in awe at how far we’ve been carried.
I can’t imagine a more complete and all encompassing community as the one we’ve experienced these last couple years.
Duffy boat fun
It was you who created a service project centered around supporting our family and dropped off special gifts for the boys, gift cards, all kinds of yummies, and words of encouragement that helped us along for months and months on end.
It was you who chose to care for my boys, whether it was a couple hours or many many days, whether it was just that one time we really needed someone or a steady hand in our home.
It was you who prayed and prayed and prayed and prayed. And when there was nothing else you could do, you continued to pray.
It was you who uprooted your lives and moved here to be with us, to support us, to love us.
It was you who sent consistent messages of encouragement through facebook, texting, notes in the mail and phone calls.
It was you who made sure I got “mom time” through coffee dates, treating me to hair cuts and color, massages, facials, or allowing me quiet time to just go “be”.
It was you who helped Danny and I continue to prioritize our marriage.
It was you who told me (not asked) that you were going to be paying for housekeeping so I didn’t have to think about how to find time and energy to deep clean my toilets.
It was you who went grocery shopping for our family and provided meal after meal after meal.
It was you who sent special deliveries, and dropped off flowers or sweet treats just to put a smile on our faces.
It was you who helped us celebrate our last Christmas with Titus really big, gave us Disneyland experiences as a family, gifted your time and talents to give us memories of our boys through photographs, blankets, and boat rides.
It was you who invited us over to just enjoy being together and allow us laughter and reprieve from the seriousness of our daily life; to gift us your friendship.
It was you who donated whether it was to help us purchase our van, make 13 round trip flights to Ohio, or manage the daily financial burden that a rare disease brings upon our family.
It was you who did lemonade stands, sold baked goods, held garage sales, auctions, played sports games dedicated to our boys, ran 5ks to support us, rode 1300 miles on your bike, hiked mountain peaks, all to join hands with us in this journey.
It was you who helped us through a refrigerator and washing machine crisis.
It was you who gave Titus and Ely gifts of laughter and joy as you engaged with them doing silly things like karate chops, raspberries, monkey noises, train whistles and dinosaur roars.
It was you who didn’t shy away from the pain of that last week with Titus, but poured into our home to say goodbye, to bring an entire “Titus parade” in yellow to our front door, to hold our son, to shed tears with us, to sing praises to our God with us that filled us with strength and hope, to pray around us, to remember with us.
It was hundreds of you who showed up to celebrate Titus in the most beautiful memorial service we could’ve hoped for. Jesus sure showed up there.
It was you who took us in as complete strangers to stay in your home every time we traveled to Ohio for treatment and let us use your vehicle. We didn’t stay strangers… no, now we are family.
It was you who didn’t have to befriend us, but each time we journeyed to Ohio we were greeted by your smiles, love and support in so many ways that filled us in a most exhausting time of our lives.
It was you who found yourself on this very same Batten journey and allowed us to feel our heartbreak together and find hope together.
It was you who created a safe place for us to be vulnerable, angry, joyful, inspired, confused, burdened.
It was you who advocated for us through the FDA approval process, who allowed Ely in to the trial, who fought long and hard to open a site locally.
It was you who care so wonderfully for my son at each infusion with a smile on your face and joy in your soul. You give hugs, a listening ear, and even soy lattes.
It was you who taught my boys in your classrooms, but you did more than teach. You loved and loved big. They felt that love and so did we. Always.
It was you.
I only stop here because I know this post is getting quite long. I think I made my point. You may wonder how joy keeps bubbling to the top, even as tears of pain spill over my eyes… Jesus has given us the most incredible gift in all of you.
Generosity at this level can feel heavy. But through this journey, we have changed. We’ve learned to say “yes, please” and “we need you”. As a result, our hearts have burst open to be filled with enough. Enough to do this journey courageously. My prayer is that it’s enough to spill out onto others who need the same thing we needed and continue to need; love, support, prayer, and hands locking hands saying “you are not alone”. Oh how I no longer live to check off a bucket list, but rather to pour my bucket out even as God is filling it so others experience the goodness of God and his love for each and every one of us.
To you, thank you. I’m forever grateful to journey this with you as I share the words on my heart through this blog. Our journey is no where near over and I continue to dream of what God will keep doing to redeem the pain and heartache of this life. I’m excited for what is to come even as we live in great uncertainty with Ely and the grief of saying good bye for now to Titus. Uncertainty and grief do not equal hopelessness, but rather I have hope and great anticipation for what is to come. Thanks for journeying with us.
Thanks for listening,