Defining Moments

I hate labels. No, not the kind on food or medicine, which are practical and helpful except when they are deceptive.

The labels I hate are the kind applied to people. Mostly, I hate them because they do not define a person, only a condition, or at least what some expert seems to think is the condition. So what.

Somewhere along the line someone said I was shy. Is that bad? We introverts are supposed to extroverts. That is the norm. It took me some time to say, “You’re OK. I’m OK.”

As is the case often these days, my fractured mind took me off course. The excerpt below is what got me to thinking about labels. Dear Gentle Readers of some standing may remember my grandson Nic’s extremely early arrival into this world at 26 weeks, 1 pound and 12 ounces in February 2008. Then as now, we worried how these circumstances might impact his life.

While Nic has already overcome many hurdles, he has his work cut out for him. Of course, he is not alone in his journey. In addition to family, Nic has an army of specialists and experts on Team Nic. Here’s what Nic’s mom had to say recently,

We have been worried with the continued stiffness that Nic has in his legs, feet and pelvis. Upon several expert suggestions, we decided to take Nic to Children's Memorial Hospital in Chicago to see a pediatric physiatrist, who specializes in whole body movement. Nic hasn't been able to sit up on the floor by himself because the tightness makes him fall to one side or throw himself backward. It also can make him “slouch” when sitting in a highchair. The physiatrist confirmed what we thought, which is that Nicolas has Cerebral Palsy in the form of spastic diplegia. This means that the legs are primarily affected, and also minimal tightness in the arms. This type of CP does not usually affect the cognitive or social abilities of the kids who have it, and does not get worse. CP is a condition that you are born with and that does not progress. Right now we know that the brain trauma he suffered after premature birth is causing his brain to send chemicals to his legs to make them stiff. Although it is hard to have your child labeled like this when he is so perfect in your eyes, we know that CP has a wide range of effects, from very mild to severe. Right now the doctor classifies his as mild.

We are going to have to help Nic continue to work hard to stretch and loosen these muscles in order for him to be able to sit up and eventually walk. That is a scary proposition for any parent to be told that your child may not walk. But, we have great faith in Nic’s abilities and are so proud of his determination so far. He already is exercising and stretching himself and helping himself make progress. I already can’t help but think of him as a tough guy and look at other kids differently because they don’t work as hard as he does. I’m sure that will always be the case.

Other things that we will be doing to try to help him progress is adding PT for a second time a week, starting Occupational Therapy, and also adding Aquatic Therapy once a week. Yes, Nic is going to get more pool time! He loved his first swimming class with Jeff at the Rush-Copley Healthplex, but now he will be trying therapy in the water one-on-one with a PT. I think he will really like this and we will continue to feed his love for the water. This weekend he used his baby pool on the deck for the first time. We will also be using the braces for his feet and knee immobilizers to help him stretch and keep his feet in the correct position. There may be other orthopedic devices that we employ here in the near future.

Down the road Nic may also need surgery, Botox injections, serial casting or oral medications to loosen the muscles as his bones grow longer. The Physiatrist specializes in kids with CP and is going to help us coordinate all his care so we don’t get lost in a sea of opinions.

It is what it is. It is not what it will be.


NOTE: Lisa Belkin has a parenting blog over at the New York Times called Motherlode. She recently posted a wonderful piece of writing by David Sexton titled “Out a Breath,” which was about having a child with Cerebral Palsy.