This week we are feeling incredibly fortunate at the way time has flown since our last update. Thank you so much to those of you that have been by our sides over the past five years. Whether in person or online, we know how lucky we are to be able to say, “We were never alone.” There is so much to catch up on, so much to share, but our proudest update is how rich we feel in normalcy. There was a time that routine life at home felt totally out of reach to our family. The great joy of our current season has been in acceptance of our reality. We have some built-in challenges, a great need for support and a great joy in the life we get to live together. 

Where our last post left off, Wade had just completed his kidney transplant! What followed was a year of revolving door hospital stays. In the moment, everything felt easier than at-home dialysis. The word of encouragement we always extend to kidney parents is: “If you’ve done at-home dialysis, you can do anything.” During the initial months post-transplant, there is a hypervigilance around rejection of the transplanted organ. Any time Wade spiked a fever, which was about every 2-4 weeks, our nephrology team would call us in to the emergency room. A parent arriving at an emergency room with their transplant child showing signs of a fever should be prepared for, “Ok. Don’t worry, I’ve handled rejection cases before.” or “So we’re going to run some tests, dad. There’s no reason to panic yet.” By the end of that first year, we were able to walk into the ER and guide the team with, “Hi! This is Wade. He’s been sitting at 104 for about two hours. When you run a urine sample, this is what you will see. We are going to alert nephrology that we’ve arrived, they will order panel A, B and C. We feel confident that this is Wade’s presentation of (insert infection here). We can show you how he does best for a draw. There is no need to jump to conclusions right now.” 

We became acclimated to staying at the hospital about 5-10 days out of every month. Wade was prone to urinary infections during that first year. Each stay, we became more steady. Our team never left a stone unturned. We learned to manage fears, to sort them by urgency. I spent a lot of nights crying over lab results. By the end of the year, numbers that would have ruined my week became interesting, not scary. The skill we honed by the end of the year was discernment. We learned to look at our child first, not the numbers coming through on our Vanderbilt app. We learned to say yes to fun, to rest, to ease whenever possible. We made our peace with being regular visitors to Hotel Hospital. 

The amazing shift about 8 months later was realizing, “Wait a minute. When was our last inpatient stay?” Wade’s second year post-transplant, it seemed his body was working in every better harmony with his transplanted kidney. We felt ready to try some bigger new experiences. We took Wade on his first trip to Canada! He got to swim in Lake of the Woods, show us how much he loves road trips, and make a pit stop to Chicago on the way home. Later that year, Wade came with us to New Orleans! Again, he was so open and curious about seeing a new place. He got to hear jazz on Bourbon Street and tear up the dance floor at Auntie Lauren and Uncle Nate’s wedding. 

In the midst of these new experiences, we had a routine pediatrician visit. During this visit, Wade was flagged for autism markers. We knew that he had a speech delay, and were beginning to notice some behavioral differences in him. We were not shocked to be referred to Vanderbilt’s Developmental Pediatrics team, and in August of 2024, Wade was given a Level 2 / 3 Autism diagnosis. Post-diagnosis, we sought out some behavioral health support and became connected with the team at High Hopes in Franklin. Wade has received all his therapies (Speech, Occupational, Feeding and Behavioral) at High Hopes Preschool + Pediatric Therapy Clinic since November 2023. Our therapy team at High Hopes are some of our most precious loved ones. The care they have taken to earn the trust of our son is a shining example to us. They have set the bar for us in terms of providers in Wade’s life. 

In 2025, life at home felt very transitional. Phil began to work at a new restaurant (Turkey and the Wolf Icehouse) and Wade continued to sit on the wait list for preschool. He has thrived since Day 1 at High Hopes, and our dream was for him to get to experience their hybrid model of therapy integrated into preschool classrooms that are intentionally filled with a 40/60 ratio of disabled/non disabled (or medically complex/non medically complex) children. By the winter of 2025, we were feeling that it was time for Wade to find another preschool option so that he could gain experience in a classroom. Even if that meant we would be handling a school schedule and 7 therapy sessions a week simultaneously, likely with a 45 minute commute between the two. Finally, in December of 2025, our family’s Christmas gift was a spot for Wade in the High Hopes preschool. He started halfway through the year in January of 2026 and we have been truly humbled by the care that Wade receives at school. Beyond the safety and love Wade experiences at school, we are overjoyed to see the way Wade’s “typical” peers thrive in their preschool environment. Typically developing peers benefit when they are exposed to kids of all abilities from the beginning of their school journey. Another bar High Hopes has set for us is the bar for Wade’s classroom environments. We know that we live in a country and a state where Special Education funding is consistently cut, and where supports for medically complex families are always on the chopping block. Right now, we are witnessing the outcomes that occur when a dedicated community of teachers, therapists, parents and kids are committed to truly inclusive education. We are soaking in this time, taking every opportunity to learn and develop our skills as parent-advocates. We expect to use what we are learning at High Hopes for the rest of Wade’s educational journey. 

So, that brings us to now. We are enjoying what we have affectionately named “Normal Ass Summer.” We have no major plans, no trips. We are enjoying work schedules that feel predictable (hallelujah) and fulfilling, opportunities to give back to our community, and Wade is crushing it at Camp High Hopes this summer. We feel more stable than ever, and more aware of our needs. We feel closer to Wade than ever, and constantly working to step into his world. We feel out of control, thank goodness. Most of all, we feel surrounded by precious loved ones. Thank you for walking with us, every leg of this journey.