Tristan is the child we were told would never be. He is the last of eight pregnancies, our third child. After my daughter was born, we were told there would be no more babies. We had a healthy son and daughter, so although we were sad, we were ok. We were a family, and life went on. Twelve years later, even my gynecologist ran the test twice. WE WERE HAVING A BABY! It was by far my easiest pregnancy, and we all waited with eager anticipation for our new arrival.
Tristan was born on the day before Thanksgiving, November 22, 1995 at 4:01am. He was a c-section, but was a beautiful, healthy, 9 lb.5oz, 21in long, baby boy! It was a truly blessed Thanksgiving Day. As it does, life moved on through the holidays, we planned a family vacation to Disney World in the spring, little suspecting that we were about to embark on a journey that has had little to do with the Mouse.
On April 9th, 1996 we set off on our road trip to Disney, planning to stop for a visit with my sister in South Carolina. It was a beautiful, sunny day. Toward the end of the day, on Interstate 95, Tristan had his first seizure, about a half hour from my sister’s house. The rest of the week is a blur, but I remember it involved a cancelled vacation, a trip to The Medical College of Georgia Hospital in Augusta, numerous EEG’s, bloodwork, a wonderfully thoughtful neurologist named Jennifer Sekul, traffic from The Master’s Golf Tournament, paralyzing fear, and in the end, no answers. “Most likely febrile, follow up with a neurologist when you get home”. Tristan was five and a half months old. Unfortunately, it wasn’t that easy.
Within a month or so, Tristan lost a third of his body weight, seizures continued and increased in both severity and frequency. He suddenly stopped tracking with his eyes, muscle and grip weakness appeared, he began to miss milestones. Reflux had been an issue from the beginning, but we had a number of babies in the family that had been through that before, so until the avalanche of other issues, we really hadn’t worried. This was different. Suddenly, there were tests, lots of tests, lots of doctors (23 in the first year), lots of hospitals (7 in the first year), and no answers. Then came the “J” tube to which Tristan apparently had an allergic sensitivity, so he sneezed them out on a regular basis, requiring fluoroscope replacement, sometimes 2 or 3 times a week. The general consensus of all of this medical intelligence, and I mean that respectfully, because we were privileged to see some of the very best specialists in the country, was that we should prepare ourselves for the eventuality that this beautiful, long awaited, cherished baby boy wouldn’t see his first birthday.
No one can prepare you for hearing those words. So apparently, Tristan didn’t listen. He fought, and because he did, so did we. We lived with constant fear, anxiety, well intentioned questions, the ”oh,
isn’t that awful stares”, abandonment, because friends didn’t know what to do or say, lonliness, exhaustion, guilt, crippling medical expenses, all while trying to maintain some semblance of normalcy, some sanity. We had two other children, who also needed our love and attention. We both had jobs which had much needed benefits attached, we had aging parents, we were aging parents. The only thing missing from this circus were the elephants.
We built Team Tristan, member by member. Not every medical professional made the cut. When they didn’t fit, we moved on, testing continued, so did the circus and then something miraculous happened. Tristan turned three! We knew for sure at that moment medical science had no answers. But it didn’t matter – there was a battle to fight. Tristan was waging war and we were his army. We didn’t know what the enemy was till 16+ years later, but the impacts of his disorder were significant and daily. He had seizures (9 different types over 24 years), CVI, global delay, GERD, reactive airway, hypotonia. He was nonverbal, couldn’t stand, sit up or move independently. He caught every cold, bug, flu, virus he could find. He held strong through hospitalizations 12-15 times a year, tests whose results filled three, four-inch ring binders (we carried these from doc to doc, hospital to hospital to save time on new docs/hospitals requesting results – we predate electronically transferred files!), leg casting, dafo’s, therapies, IEP’s, muscle biopsies. The list is endless. We did the only thing we could do. We took them on, one at a time, each and every day for the last 24 years. We learned to speak “Tristan”. He has taught us compassion, empathy, how to live in the moment, that planning is helpful but useless, how to innovate solutions, how to suck the smallest bit of joy out of the worst, most difficult days, and above all PATIENCE.
In the beginning they told us all the things that Tristan would never be or do. What they didn’t count on was Tristan. He will celebrate his 24th birthday on November 22nd. He has done what they told us was impossible. He has not only survived, HE HAS THRIVED. He can communicate in his own way, he FINALLY sleeps most of the night, he has friends, a widening GRIN family, he graduated high school, he has enjoyed Broadway shows, he likes being read to, music of all kinds, and has met Brad Paisley, Billie Jean King and Taylor Swift. He has traveled to 16 states, and has been to Disney World four times since that cancelled vacation. He is now learning to move his electric wheelchair independently, probably his biggest adventure yet (does anyone know a good dry wall repair person?!!)
A cure would always be better, but life in Tristan’s world is good. Stay tuned – he’s not done yet!