Round Two & the “Heart Warrior Store”
Surgery Update & Prayer Requests
We took a trip with Benji to Shands Children’s Hospital in Gainesville a few weeks ago. While there, Benji underwent two separate but related procedures: a catheterization to explore the condition of his heart, and the installation of a stent in his heart shunt. Based on what was discovered during the cath, it was determined that Benji’s next major open-heart surgery would need to happen sooner than expected.
After a few weeks of waiting, Benji’s surgery has been moved up several weeks to Friday, August 8.
We are so grateful for this change because it ensures Benji will stay comfortable and safe until the next operation. We are also slightly overwhelmed because that is only three weeks away at the time of this writing! We will be traveling up a few days prior for pre-op work, and we expect Benji’s recovery to take 1-2 weeks in the hospital post-surgery, followed by 6-8 weeks of limitations and recovery at home. Here are a few things on our mind and/or that we could use prayer and support with as we prepare, practically and mentally.
We have found a “groove” and more routine with our two boys at home. Edmund James has (finally) readjusted and started sleeping through the night more easily, and Benji has (mostly) been doing well at home. We have even gotten more sleep, more often, and have found a greater work-home balance. It is hard to know that we are about to uproot everything again. Pray for our peace of mind as we prepare for this change and how it affects the following months.
This time, we are doing our best to keep our oldest son, Edmund, with us the entire time, rather than splitting his time between Gainesville and Port St. Lucie. We rented an Airbnb for some normalcy and more space to do this. We found a fantastic place about ten minutes from the hospital and look forward to staying there! But this is a significant added expense to our stay, whereas staying at the Ronald McDonald House was free last time around. Join us in celebrating good, clean spaces to rest and pray that the space will serve its purpose and be worth the expense.
Once again, our families choose to be incredible blessings by joining us in Gainesville for some or all of the time we are there. We are continually grateful for their love and support, but we know it is a sacrifice for them. Join us in being thankful for their kindness and praying that God will reward them for their kindness.
We are also continually humbled by the generosity of others as they support us financially. It has been challenging for Andrew to keep up with the needs of ministry and existing clients, let alone find time to build his business. Yet, each month, any deficit we might be at or any unexpected expenses that arise have been largely taken care of by the timely donations of others! Join us in our humble gratitude for God’s provision through others, and pray for continued provision and for the strength and capacity to serve the church and work for others with excellence during this upcoming stretch.
Of course, pray for Benji. We continue to pray for and believe in the possibility of a miraculous healing. Yet, we recognize that this surgery is likely the next part of Benji’s story. If so, pray that everything, from pre-op to recovery, would go remarkably well, without complications, and that Benji would be strong and healthy through the intense operations.
Upward & Outward
From the very beginning, we knew that Benji’s story would be about more than Benji or us. Through our struggles and wrestling, we have continually aimed to take our eyes off ourselves and our situation, and turn them two directions: upward and outward.
Upward toward the Sovereign God, Grand King, and Good Father we know, love, and strive to serve. In all of this, our faith remains in Him to do as He sees best, whether healing and life, or death and loss. That is an immeasurably hard place to be when it’s about your precious son. Yet, even then, we know that God knows a thing or two about that, for He chose to give His only son for us (John 3:16), to save us from a condition of the heart far greater than HLHS (Romans 6:23). When we consider that depth of love and that sacrifice, we only hope to love Him as fiercely in return and replicate that love and sacrifice toward our son. Pray we keep our eyes fixed on Him as we strive to persevere in this trial (Hebrews 12:1-3).
Outward to others. Our prayer is chiefly that our testimony bears the fruit of salvation for someone, if not many, as they follow us online or we encounter them in hospitals, clinics, and wherever else. Secondly, we hope to raise awareness about congenital heart defects and the children and families suffering from them. It is a unique form of hardship we are now intimately acquainted with. To do this, we are launching the Heart Warrior Store.
The “Heart Warrior Store”
When we received Benji’s diagnosis in November 2024, we quickly learned that we were now a "heart family" with a "heart warrior" for a son. This vernacular is widely used with families going through congenital heart defect diagnoses, and it has stuck with us. We knew we wanted to do something with it, but didn’t know what that might be. That was until our dear sister Megan (@little_studio_artist) drew this:
As soon as we saw that, we knew — this needs to be a T-Shirt! One thing led to another, and now, The Heart Warrior Store carries a selection of shirts, hats, sweaters, mugs, and other items depicting Megan’s art — a “heart warrior” bear in Benji’s likeness, going to battle for his life (thank you, Megan!)
Most of the income from purchases goes into production and shipping, but any modest profits from the store will help pay for medical and other expenses associated with Benji’s care. Truly, though, the store's goal is more than that. We genuinely hope that the products from this store help raise awareness for heart warriors everywhere!
Final Thoughts
It is no coincidence that the word “warrior” is a recurring theme. Not because we feel like ones — hardly! In this time, we often feel sapped of any strength, all of the time, if we are being honest. There are days when the “fight” feels too overwhelming. Yet, the “warrior” theme persists. It’s a reminder that though we are a “heart family” and Benji is a “heart warrior,” there is another warrior in this fight:
The Lord is my strength and my defense; he has become my salvation. He is my God, and I will praise him, my father’s God, and I will exalt him. The Lord is a warrior; the Lord is his name. —Exodus 15:2-3
These verses come after the Israelites' miraculous escape from the Egyptian army at the Red Sea and are part of “The Song of Moses.” Moses and the Israelites sang the song to celebrate God's power and victory in delivering them from slavery in Egypt and the encircling Egyptian army. It is one of my (Andrew’s) favorite sections of Scripture, and it is the inspiration behind one of my Top-10 favorite worship songs, appropriately titled “Song of Moses.” Listen here:
Way back in the late 2000s or early 2010s, this song was released at a youth camp I (Andrew) was serving at as a leader. I remember it resonated so deeply with a young Andrew who thought that his circumstances then were significant. Now, all these years later, it is one of the few songs I am sure to turn the volume all the way up for and sing at the top of my lungs. Only now, the words cut deeper, and the truth seems more powerful. I don’t ultimately know the outcome of this trial. But I know the Lord is a Warrior, fighting for me, my family, and my son. And in life or death, by His name, we will overcome.
The fight, then, is not mine, Chantelle’s, or even Benji’s to win. In this, we all have one task:
“The Lord will fight for you; you need only to be still.” —Exodus 14:14
Please, continue to join us in this fight. Pray often. Give financially as you are able. Don’t hesitate to check in on us (we need it!). But please, don’t forget to do what I am often trying to remember to do myself: be still before the God of heaven and earth, and trust in His might and power. Nothing will help us or Baby Benji (or you, in your own trial…) more than that.
Thank you, and we love you!
A & C
