One of the charities that we support is the March of Dimes. Henry was premature, and the MoD does wonderful work. When you become a benefactor to the MoD, they show their gratitude by sending labels to you. They also ask for more donations, by sending labels to you. They send labels for every season. They send lots of labels. Thousands. I now have so many address labels that I have decided that we can never, ever move. The other day, I decided to organize them. The ones with snowflakes, I placed into an enveloped marked, "January." The ones with hearts - "February." Flip-Flops - "July." Pumpkins - "October." After a half an hour, I started giggling. I was labeling my labels.
From a sociological standpoint, when labels are applied to an individual, it can affect his behavior, particularly when the label is a negative one. Often, those who are labeled are forced to conform to how they are being judged by the labelers. For this reason, labeling concerns me, especially regarding my children. Children should never be labeled, but inevitably it happens. I catch myself trying to do it to my boys. I guess I think that since I love them, if I create the label, then they will be protected from someone else doing it. But not even I can find a label for them. They have Noonan Syndrome. That automatically makes them different. And while that difference needs to be understood and accepted, it should not be the basis on which to judge them. On the other hand, it also should not be ignored. It is there, and it is important that others acknowledge it, but not focus on it. And therein lies the dilemma.
So, are they "disabled?" Because they have a congenital syndrome that affects their overall health, with the proper paperwork, the state would say, "Absolutely!" And their physicians agree. I have a hard time with that, though. The Disabled Label implies that they are unable to do things that others can. My boys may take longer to do physical things, like hop on one foot or pedal a bike, but eventually they are able to do most things that other kids do. Jack is able to play football. But he is not allowed. A wrong hit could cause internal bleeding, that could be fatal for him. Therefore, we have been advised to never let him play. Henry is able to kick a soccer ball and chase it down the field. But he is not allowed. In addition to the bleeding issues, pushing himself too hard could put a strain on his delicate heart. Their conditions cause limitations only because of the risk involved. There is no piece of paperwork in the world that allows you to check a box that says, "Able, but not recommended."
Occasionally, I do use the term "special needs," when talking about the boys. It seems fair. If the boys get sick, they need extra time to get better, because of weak immune systems. If they fall or get cut, they need to take their clotting medicines. They also need to see at least five specialists, annually, in addition to their regular pediatrician visit. I guess the problem I have with the Special Needs Label is that it's a little broad. I think that even parents with healthy children would consider their kids to have "special needs." You could argue that all kids have special needs. I mean, Noonan Syndrome aside, Henry needs at least five minutes of snuggling after he wakes up, or his day just doesn't begin properly. Jack needs to have his oatmeal put in the freezer to cool off, or he won't eat it. Henry needs his blue clogs before he leaves the house, and Jack needs his boo-bah before he goes to sleep. And those special needs affect my daily life much more than the medical needs do.
Unfortunately, some labels my boys will never have. Normal. Healthy. Athletic. And that's okay, because those don't necessarily apply to Jack and Henry, either. It's only a matter of time before their peers realize that they are smaller than other kids their age. Or that they miss a lot of school. Or that they can't play as rough. But it's also only a matter of time before their peers realize that the vocabulary and grammar of my boys is more advanced than those of some adults. Or that they are so imaginative, they can create an entire day of play based around an empty paper towel roll. Or that they charm everyone that they meet, even if it's just in line at the grocery store. I can only hope that by the time they begin to be labeled, their medical issues take a backseat. I can only hope that others realize that there is much more to my boys than their NS. I can only hope that they are labeled Kind. Generous. Trustworthy. Gracious. Honest. Good.
As I finished labeling my labels, the boys came up to me and asked if they could have some of my "stickers." So, using a Sharpie over my own name and address, I finally did it. I labeled my boys. On the one with the mess of curls, who looks exactly like his mother and has a laugh that can light up a room, I placed a sticker that said, "Jack." On the one with self-cut bangs, his daddy's eyes and a devilish grin, I placed a sticker that said, "Henry."
They stood, happily, proud to display who they really are, my Henry and my Jack. And I hope that those labels stay with them forever.
