With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.
I don’t think I was qualified for the job when I became a father for the first time. Our oldest daughter is six now, and despite (and perhaps because of) many of her wonderful idiosyncrasies, I think I’ve done as good a job as I could have expected.
Our younger daughter, Zoe, has Rett Syndrome, and I can say without hesitation that I wasn’t qualified to handle the responsibilities that have come with that. Any success my wife or I have had in this area we owe entirely to Zoe. Despite the limitations, obstacles, and hardships that Rett has presented to her, Zoe has the purest heart and sweetest demeanor of any child I’ve ever known. Without those qualities – along with her wonderful smiles, her reassuring pats on my cheek, and the two-armed hugs she’s developed the skills to administer in the last year – this job would be so much more difficult.
It has still been a tough journey, for which my wife and I have been fortunate to have each other. Zoe is as healthy as she could be in light of her condition, yet there have still been long nights in the hospital, waiting for her tiny body to rehydrate from a bout of pneumonia, and neurological episodes that approach a blurred line into seizure activity but never cross it. Out of all those scary moments, none came close to the anxiety we felt the night before Zoe’s first day at preschool.
Up until that point, Zoe had never been anywhere without either of us, except for the occasional overnight visit with relatives. She could neither walk nor talk (and still can’t), and yet we had this notion we could send her off to school, on a bus, no less. My wife and I barely slept that night, and I was ready to call the bus company and the school first thing in the morning to say we’d changed our minds.
There was no way she was ready, I assumed; the whole thing would have to wait till she was ready. Luckily, Zoe knew better. Morning came, the bus arrived, and we buckled Zoe into her seat for the ride. She had as big a smile on her face as she could muster and could not have been more excited to start something new, to experience something fresh. The look on her face was unmistakable, and she had the same expression when the bus brought her back that afternoon – ‘What the heck were you so worried about, Daddy?’
That was two years ago, and while I laugh at myself for worrying like I did, I can already feel the same anxiety building for this fall, when she goes off to kindergarten. I tell myself this time, I’m right. We don’t yet know what school she’ll attend or what kind of program it will be. She could attend a school 30 minutes away instead of our neighborhood elementary school where her sister goes. She could be in too restrictive a special needs program, where she won’t be exposed to the appropriate kindergarten curriculum.
We could get our wish, and she could be in a blended program with typical kids, but those kids may not understand her or her condition. It’s terrifying to us, every possible scenario that can arise. But if we continue to be as lucky as we’ve been, the next terrifying situation won’t be the last one. We keep praying there will be another terrifying situation for Zoe to confront around the corner from the last one. She’ll continue to wonder why we worry, and she’ll continue to do just fine.
And every day, we try to figure out a way to make up tomorrow for the fact that we didn’t overestimate Zoe today. Why don’t we do that more often? I guess I’m too afraid, and not equipped, to let the most indomitable spirit in this house have her way with the next obstacle in front of her. After all, around here, she’s the one most qualified to deal with this on a daily basis. I’ll learn someday.