This Thanksgiving, I am thankful that my precious little warrior is doing so well.
When my daughter, Chloe, was diagnosed with tuberous sclerosis complex (TSC) five years ago, I felt like it was the end of the world. Since the disease affects so much of the body – causing tumors in the vital organs and so much more – I was completely overwhelmed.
I was overwhelmed by the thought that she could die at any moment from a seizure. I was overwhelmed by everything I read online, by everything the doctors said could happen to my sweet little girl. I was overwhelmed by the fact that she would eventually need a kidney transplant. I was overwhelmed with trying to keep up with all of her new medicines, dealing with insurance and getting her to all of her doctors’ and therapy appointments. It was all way too much for one family.
While the fears won’t ever fully go away, we have settled into this way of life and accepted it for what it is (although we will never give up on finding a cure). And though I can’t say I will ever be thankful for this wretched genetic disease, I am thankful for what it has taught me.
This disease has toughened me up. It has broadened my horizons. It has brought people into my life who I never would’ve known if it weren’t for TSC. It has taught me to be less judgmental because, as they say, we are all fighting some kind of battle. TSC has brought me closer to the Lord.
Basically, TSC has taught me to be thankful for the good, even when the bad is so very bad. The good is what keeps me going when all I want to do is give up.
You see, I’m not one of those glass-half-full people. I have to work really hard to find the silver lining in those clouds. But I’ve realized that there is always something for which to be thankful. I might have to dig and dig to find the bright side, but when I do find it, I am so much more at peace.
This Thanksgiving, I am so incredibly thankful that it’s been almost three years since Chloe’s last seizure. I am thankful that she has not needed any brain or kidney surgeries, despite having a tumor and several different types of growths in her brain, despite the fact that her kidneys are completely covered with cysts.
I am thankful God gave us such a sweet, tough girl, a child whose persistence and positive attitude has made all the difference in her well-being and in the well-being of all of us who love her. She inspires just about everyone who hears her story. That includes me. I like to say, “When I grow up, I want to be like Chloe.”
But watching my daughter, who is known by many as “Super Chloe,” as she marches into the hospital, pink and purple cape flowing behind, with that big smile on her face, is the most amazing part of it all. She brings new meaning to the word “bravery.”
While other kids would probably cry and protest about having to go to the hospital, mine counts down the days. She can’t wait to see her favorite people – her doctors and nurses. She will gladly put up with a needle in the arm to be able to see these people.
I don’t know if it’s because I talk it up like we’re going on some fabulous vacation and spoil her with ice cream and manicures. I don’t know if it’s just the way God made Chloe, but it doesn’t matter. I’m just so thankful that she is not letting this disease ruin her life. She refuses to allow that to happen.
So this Thanksgiving, when you are frustrated with family members or your turkey dinner turns out to be a disaster, find something to be thankful for. Anything. Dig deep if you have to. Focus on the fact that you have a kitchen in which to cook. The fact that you had the money to purchase the food.
Focus on that, and thank God for it because some people have nothing. And some people – even little people – have huge battles to fight and still see the good over the bad. Follow in my daughter’s footsteps. Close your eyes during those blood draws and focus on the prize.