When Chloe was a baby, Theo asked on more than one occasion when she would be a real sister. Theo was three, nearly four, when Chloe was born, and his vision of having a sibling was quite different than the reality that was placed before him. This whiny, weepy, moist creature was not someone a little boy could play catch with, or blow bubbles with, or play with in the backseat of the car when the ride into town proved to be long and boring.
The older Chloe got, the more likely it was that some ridiculous thing Theo did would make her giggle, and he lived on those giggles, sought after them like a woodpecker hammering at every tree. If Chloe laughed, Theo got louder, sillier, until Sean and I realized we had to tutor our son in the finer points of comedy, like timing, and the power of the slow build. But we all lived on Chloe’s giggles, and if anything made her laugh, it soon became the only thing you could hear the Odom’s saying.
There was a short phase where the word “whoa,” shouted or sang, would make Chloe laugh. So our house echoed with the single line from Neil Diamond’s “Sweet Caroline,” any time we needed to feast on the bubbly sound of Chloe’s laugh. (Sing with me! “Sweet Caroline, whoa,whoa,whoa…”)
Chloe grew, slowly, but didn’t develop how we all imagined she would, and our family’s future started to look a little different. She only paid attention to bubbles sometimes. And those laughs were not guaranteed the way we desperately needed them to be. Theo was still asking, “When will she be a real sister?”
It was when he once phrased it, “She’s not like a real kid,” that we knew some vocabulary needed to change. But how? At that point we didn’t have a diagnosis, no name to give the monster that kept her from engaging with all of the “real” kids, her brother included. Oh, but we knew she was real. We just didn’t know how to explain it to people. She will love you, she can hear you, she just will not answer, she will not say hello back.
We used to say, Chloe is different. I hesitated to say she is “special,” as that implies that your kid is, in fact, not. I don’t mind different. We are all different. Chloe’s “different” just needs some extra consideration.
When we got the diagnosis, when the monster got a name (Odom’s, meet Rett. Rett, like Mr. Rhett of Gone With the Wind, does not give a damn what he keeps Chloe from, or what part of Chloe he keeps from us), Theo’s response was simple, and wise. “I wish this thing had never got a hold of my sister.”
What a difference a name can make. Now he has the words. “My sister has Rett Syndrome.”
Yesterday Chloe and I were at Theo’s school for some end of year good times, and I overheard Theo telling his friends about her. Chloe has been doing lots of walking on her own lately, producing tears and cheers from all of us lucky enough to watch. (In case you didn’t know, this is HUGE.) Theo is so proud of her. With an enthusiasm only found in an eight year old boy, he told his friends about these adventures of Chloe’s. If he had been wearing any buttons, they certainly would have been bursting. This momma’s heart swelled, and I wondered if Chloe had heard, if she could comprehend just what this pride means, because, frankly, she’s used to this level of praise and love from her doting big bro. His friends were enthusiastic in return. “We should change her name to Super Sister!” they said. “Totally!” “Yeah, totally! Super Sister!”
Today we went in to his school for a barbecue, celebrating the last day. Theo’s friends formed a circle around Chloe, all kneeling down to get to her level, encouraging her, congratulating her. And now you should congratulate me, just a little, because I held it together. I did not puddle on the floor in tears of gratitude, I did not kiss any of the other parents in the room and thank them for raising such sweet children. I did tell Theo later, when we were on our own, how proud I am of him, how his love and pride for Chloe have power, to help kids see just how they can be Chloe’s friend.