Chris's brother, Ryan, and his wife, Brittany have two beautiful, darling little boys. They live in Tennessee, so we don't get to see them often. But we follow their lives from states away, thanks in large part to blogs and Shutterfly and Facebook.
Their oldest son, Greyson, is now 4 years old, just one month younger than our Ella Bella...as you can see from this picture they took together, the very first time they met, at just 3+4 months old.
Greyson is ridiculously handsome. And you can see his gentleness of spirit and his kindness in his eyes, by looking at just about any photo of his sweet face. He's a loving soul and a cuddlebug and the stories of the foods this child will eat will make moms of picky eaters, like me, want to weep. Greyson has a darling younger brother, Lachlan. Two of the best parents on earth. Great teachers, a great school. He has a loving extended family. He has a momma who throws him birthday parties that are lauded for their awesomeness by 'big deal' party planning Web sites and blogs. He has a best stuffed animal friend, named Englebert Humperdink; and a real Great Dane he can ride like a pony.
And he also has a disease called Tuberous Sclerosis.
This disease affects 1 in 6000 babies. But before we learned our nephew had it, we had never heard of the disease. The cause of Tuberous Sclerosis is unknown. And there is currently no cure.
The disease affects people in many different ways. So far, this disease has caused Greyson to have multiple seizures, daily, since he was an infant. It's caused him to be on dozens of different types of medications to control those seizures. And the medications have often kept him from fully experiencing life -- from fully being able to learn and play and develop -- like he'd otherwise be able to. It has caused permanent problems with his kidneys. It's limited his motor skill development and his speech development. It's caused him to visit the hospital more times, and to have more complex medical procedures, in 4 years than most people do during the entire course of their lives. And that's just scratching the surface when it comes to explaining how this maddening disease has impacted his darling little life.
This disease has caused Greyson's incredible parents more worry and concern than most parents experience in a lifetime. It's the reason they haven't really had a full night's sleep in 4 years. It's the reason they don't feel completely comfortable going out for a couples' only date night, why it's hard for them to contemplate going away by themselves for a long weekend.
Ryan and Brittany are my heroes because despite the many challenges this elusive disease has placed in their way, they endure, and fight, and perservere, and live inspiring, beautiful lives.
They're my heroes for the way they love Grey and Lachlan. They're my heroes for enduring the constant hurt that I know their hearts must feel every time they see Greyson fall because of wobbly legs (another consequence of this merciless disease), or experience a rough seizure, or zone out because of medication. They're my heroes because they don't just have to endure these heartbreaks once in a while, once every few months. They have to endure them every day. And they do it with grace and strength and courage. And it humbles me.
As a mom, Brit is my hero because she endures all of these challenges while still being Brittany. Funny and sassy and drop-dead, perfectly beautiful...talented and artistic. Witty and strong. The woman who decorates a house that belongs in Better Homes & Gardens, where drop-in guests could eat off the floor. She does it while cooking gourmet meals and throwing fabulous parties for her clients. While maintaining an awesome bod with arms to die for. She does it...she endures all the suckiness that Tuberous Sclerosis throws her way...while still being this amazing, strong, beautiful person. Her strength and her fight...they humble me.
Ryan and Brit are my heroes for their selflessness. They're my heroes because they are the first to tell you that, while Greyson's illness is really, really tough, they're grateful to have access to quality healthcare and committed doctors; to have health insurance; to have a team of specialists to help Greyson fight this illness.
They're my heroes for taking time to celebrate the good in life. For throwing fabulous birthday parties. For doing all the 'normal' stuff that could so easily get lost in the busy-ness of fighting an evasive disease like TS. And for all the ways they go above and beyond. Like making special teacher appreciation gifts to mark the last day of preschool. Or sending thank you's for birthday gifts just days after the gifts are received.
They're my heroes for celebrating and savoring the days when Greyson thrives and excels; when TS steps aside and lets him laugh and play with his toys and his baby brother. The days that are seizure free; the days that are fall free. The days when Greyson gets to be 'just' a little boy.
They're my heroes for fighting this disease with all they've got. And for not letting it define them. Or their son.
My oldest daughter, Ella, and Greyson were born just a month apart. I often think of that first trip Brit and Ry made to Columbus. And the photo shoots we had with those two precious babies when they were just 3 + 4 months old. It hurts my heart to think about how different their life experiences have been since that first visit. I'm grateful that my girls are healthy. So very grateful. But not a day goes by when I don't think of the unfairness of it all. How one child can be born with a (currently) incurable disease. And another can be born without one.
Chris and I think and talk often about how we wish there was more we could do to help Ryan and Brittany through the tough times that TS throws their way. We wish we could visit their home to squeeze on the boys on Saturday afternoons. We wish we could give Ryan and Brittany a day off, every week. We wish we could take care of Lachlan while they're with Greyson for a routine trip to the doctor, or an unnerving visit to the hospital, or to an overnight stay for a complex medical procedure. We wish we could bring them dinners on tough days.
But the reality is that we live in Ohio and they live in Tennessee, so it's hard to show our love and support in any of those every day ways. So, with this post, Chris and I are asking you to help us tangibly celebrate and recognize the inspiring way Ryan and Brittany and Greyson fight this disease every day of their lives.
With this post, Chris and I are asking our friends (and strangers too) to make a donation to Team Greyson. Ryan and Brittany launched Team Greyson 3 years ago, to raise funds in Greyson's honor, to find a cure for Tuberous Sclerosis. Chris and I are asking you to help them reach their goal of raising $5,000. We will match the donations made by our friends and colleagues, at 100%.
Donating is easy and can be done here.
We hope you'll consider joining us to show Ryan and Brittany and Greyson much they inspire you -- by just donating $5, $10, $15 or $20. It's a small but meaningful way to show parents like this beautiful family that they really are...our heroes.
All I can say about this is that we love you guys. You are the best, truly. <3 We are so lucky to have you in our lives.
ReplyDelete