And then I remembered, if I waited until there was an end, it likely meant I wouldn’t be around to tell the story. So I began writing. Each and every day we get to be part of the greatest story ever told–God’s Big Story. There is a story to be told right now. It’s full of plot twists, broken bridges, and perspective shifts. And we get to find the beauty-nuggets of hope, redemption and joy in it all.
So, where are we now?
Perhaps the best way for you to find out our most up-to-date place in this journey is to head over to our Team 4 Titus & Ely Facebook Page or over on Instagram @cantstealmyjoy2. I also LOVE connecting with my readers over in my virtual living room monthly newsletter. You can sign up to receive that here.
Today we seek to prune out the busy, look each other in the eye, put down our phones, and attempt to be present. But it’s hard. And I am not very good at it. Life is rolling on full speed with both my husband and I working and Ely attending school, therapies and infusions. Isn’t it interesting that even when life is taken away, we still have to learn and re-learn how precious it is and fight for balance and fully-present moments?
Pressing on toward the goal
And this is where my little family lives. In this re-remembering, re-learning, re-defining. Pausing to look back and celebrate, grieve, and gain back our Jesus-eyes perspective. Then, looking to the future and setting our eyes upward on Him in hope and trust in His redemptive and faithful character. And then, looking here, right here around us and setting our feet firmly in the present to see where He would have us TODAY.
I expect this block of text to change periodically, although I sure hope not very rapidly. Ely is stable. He got a chance to start treatment at such a young age because Titus gifted him an early diagnosis. Ely started the treatment in October of 2016 at just 3 years old, and continues to grow and develop in amazing ways. In our time during treatment, Ely has lost his vision and gone blind. If you were watching him play from across the room, you’d never know. He is so resilient and adaptable to his circumstances. He makes us giggle on a daily basis and brings such joy to our household.
Ely adores other kids and I think he really craves having them around. I feel deeply for him, the loss of his brother–his best friend. Maybe someday God will see fit to grow this family in some way. We wait in obedience for where He might lead in that regard.
Ely trailblazes again
In March of 2019, Ely’s brain port failed, which means it had a hole in it and cerebral spinal fluid was leaking out of his head. Yikes! We had to go in for port surgery and our doctor presented us with a “hairbrained idea” (his words, not mine). He suggested a plan that entailed putting a power port into Ely’s chest, connecting it to tubing that would run up his neck, behind his ear and up his head to connect to the catheter in the brain. (All of this is under his skin. I know what you’re thinking… I was too!) The access point for his infusions would be in his chest, rather than his head. His next words were, “We searched to see if this has ever been done before. To our knowledge this type of system has not been done anywhere in the world. We really think this could work and have long term benefits for Ely.” What we heard was “in theory…” and that was scary!
We went home, deliberated, consulted friends, family and other medical teams and prayed a lot. At the end of the week, we decided to go ahead and try it. Potentially (in theory ;)) this new port system could keep Ely out of brain surgery for a decade of more, whereas his current system was likely to need replacing again in another few years.
Ely has had this new port system, the first of it’s kind, for 19 months now. It is working beautifully and we are so happy we made the switch. Our team is publishing this new system to make it available for other CLN2 kiddos. We never expected to move to Idaho and trailblaze this trail, but God is good and creative. We are honored and humbled to have been a part of this discovery and step forward. And we are so thankful for our “hairbrained” medical team.
Our hope is that this treatment continues to keep Ely stable. But honestly, we don’t know what life will look like in a year, 5 years or a decade down the road. Do any of us? We hold the future loosely, but we hold eternity tight. That is where our hope is.
We press on, running this race, eyes on Victory.
Thanks for listening,