A Pirate's Life for Me

When my 2-year-old son, Jordan, first started to get into pirates, I wasn’t so sure about it. I didn’t like the violence, the sword fighting, the bad language, the drinking. I didn’t really like the disabled pirate thing, either: the “peg legs,” the eye patches, the hooks for hands. Jordan wears braces on his legs for orthopedic impairments and uses forearm crutches, and I didn’t like him seeing these disabled pirates hobbling around on busted-up wooden crutches.

But the pirate thing couldn’t be stopped. My husband got Jordan into the Pirates of the Caribbean; I tried to push Muppet Treasure Island. Whatever pirate movie was on, Jordan insisted that pirates would be part of his life!

Now he is totally obsessed with pirates. He was one for Halloween, of course, and this year he’s going to have a pirate-themed birthday party (maybe even with a Jack Sparrow look-alike in attendance—but is that for him or for Mommy?).

But it goes beyond just pirates on special occasions. Sometimes I think he truly thinks he is a pirate. Captain Jack Sparrow is a constant topic of conversation at our house. Jordan’s pirate name is now Captain Jordan Two Swords. He spends most of his day thinking about, talking about, playing with, and watching pirates. His collections of Playmobil and Pirates of the Caribbean pirates and accessories are growing. I must admit that I love playing with them, too. The Playmobil pirates are like a boy’s version of Barbies, with their hats that snap on, their beards that come off and can be switched between pirates. They have capes, necklaces, earrings, all tiny and all fun to put on and off.

Then of course, there are the swords. The Playmobil and Caribbean pirates all have swords that snap on and off. Then the bigger, kid-size swords: Jordan has four of them now. I resisted sword fighting with him at first—the violence!!—but when I finally did, I was impressed with how well he does at it. He doesn’t just swing his arm around; instead, he does very precise maneuvers with his wrist. He doesn’t flail around but is very exact. And he gets so much joy out of it. He doesn’t even mind when he loses. I found a way to actually hit the sword out of his hand so I can win every time (I know, bad mommy!). He yells, “You got me!” and sometimes even falls down. His father loves swords, too, and is planning on taking fencing lessons with Jordan when Jordan is older.

Jordan loves singing pirate songs—we recently got a whole CD Of “swashbuckling sea songs.” He has so much fun singing along to the music, and he always makes me sing, too. He uses so many pirate expressions, like “Shiver me timbers,” “Walk me plank!” and much to my horror at first, “Surrender the booty!”
He also loves pirate treasure. He has loved playing with money for a while now (he even knows who Andrew Jackson is because of playing with money!). Before this, he had a piggy bank and several cash registers he was obsessed with. But now he can put his interest in money into pirate gold. He counts the coins, arranges them, puts them away, takes them back out, and shouts, “I got treasure!”

But the real turning point for me, when I began to really accept his love of pirates, was when we were shopping for more Playmobil pirates, and I came across Captain Peg Leg. With my newfound “disability rights” feelings, I didn’t like that name at all. I started to think more about how I didn’t like the eye patch or hook things, either. Why do pirates have to have these impairments all the time?

But Jordan saw Captain Peg Leg and shouted, “He has braces!” Jordan has never known a time in his life when he did not have casts or braces of some kind on his legs. So, for him, seeing someone else who had braces, which he rarely sees, was something great and new for him. I put Captain Peg Leg in the cart.

Then, while watching the pirate movies, seeing these pirates that do have hooks, peg legs (or prosthetic is the right word!), and eye patches, I started to view them differently. Yes, they have impairments, but not disabilities. The pirate with the leg prosthetic sword fights right along with the others. The one with the hook for a hand drinks his booze with the other hand. There is never any talk among the pirates about their impairments; they are seen as just another part of life. Besides, there is no time for pity or for thinking too much about any limitations—there are songs to sing, booty to steal, and adventures to have!

Mobility

When I was in middle school, I remember there was this girl on the school bus I took who used forearm crutches to walk. I remember staring at her through the window of the bus as she walked to get onto the bus. She had to cross over one lane of traffic to get to the bus. It took her a long time, and it didn't look easy for her. She always seemed happy, though. That was one thing I couldn't understand then, how she could be happy when she had to walk like that. She was very friendly and would talk to people, but most people would just ignore her. Including me. I feel so guilty and terrible now as I remember that I would think to myself, "Please don't let her talk to me." Because then I'd be obligated to talk to her, and someone might see me talking to her. I didn't have many friends. I wasn't popular at all. Yet I didn't want to be seen talking to the girl who walked like that.

Then what, 20 years later, first, I had a miscarriage in May of 2002. That happened the same week I got fired from my job. Fired, then found out I was pregnant a few days later, then went to the doctor a few days after that, who sent me right in for an ultrasound, and there on the screen: a sac with nothing in it. Or nothing we could see. Nothing every bled out, and I had to have it surgically removed. I spent the whole summer at home, jobless, mourning. Luckily, we had just gotten our dog, Kahlua, a chocolate Lab, in January of that year. She was with me all the time. When I laid in bed depressed, she'd come up and lie back to back with me. It was better than a person, really, because I didn't have to say a word.

The next year, in November of 2003, I got pregnant again. Within weeks, I started bleeding. It was heavy period-like bleeding that lasted 6 weeks straight. It was the most frightening thing to me in the world at the time--going to the bathroom so many times a day, never knowing what I'd find.

I went on bedrest for 3 weeks, but I continued to bleed. The doctor said what will happen will happen, and bedrest really wasn't going to do anything. I went back to work, still bleeding. It stopped on January 18, 2004. I don't usually remember dates too well, but that one I do. The baby was fine. But it wasn't until March that I bought one thing for the baby. I was 5 months' pregnant by that time, and my husband and I went to Target and got a few little outfits and stuff. I remember these little light green onesies we bought. They had palm trees on them and giraffes. They were sooo cute. I let myself trust that the baby was going to be okay. Finally, I let myself believe it.

After Target, we went out to eat that night, to celebrate. I saw an ex-coworker there. She was from the job I got fired from. So that brought all of that back. We liked the restaurant--they had freshly baked, hot chocolate chip cookies with cold milk for dessert! So a few weeks later, we went back to the same restaurant with some friends. I remember waiting for our table and seeing this group of two couples with their kids. One of the kids used those forearm crutches. He was about 5 years old. I remember looking at the parents, noticing how they talked so nonchalantly to each other, laughing, chatting with each other, barely watching their son as he basically ran around on those crutches. I wondered how they could be so casual about it, seemingly not even thinking about how their son was getting around.

Now when people stare at my 2-year-old son when he is using a walker, I am the one acting casual. I am the one who thinks it's great that he can get around on his own. I am not the one staring, wondering how those parents do it. I am not the kid staring at another kid using crutches. He's my kid now. And I can see why that little girl on the school bus was so happy, why those parents were laughing and nonchalant. They probably went through a lot to get to that point, and they were glad for the walking, even if it was with a "device." The independence that that walker gives my son and those crutches gave those other kids is what is important--not that they do it in the way people are used to seeing. So when people stare at my son now, I have to try to remember that I was once one of the starers, not understanding what it's like, not understanding that it's a triumph and progress rather than something to be scared of.

On Strike

Today I'm taking a break from anything medical related. No calls for appointments or insurance authorizations. Yesterday I was caught in an insane circle of phone calls about getting a medication covered for Jordan and also getting his orthotics covered. I hung up on two different people after cursing at both of them. I hate how I feel after I do that, but I get so riled up, thinking about protecting my son and getting the best for him. To have to do all this, to fight for things that he so obviously needs, that follow THEIR rules of "medically necessary," oh, it just drives me nuts. I "won" these battles, though, because both things are finally approved. I need a break from this fighting all the time. I am going on strike for the day. Ha.

Here are Jordan and his daddy after his daddy won a Curious George for him at the fair.

Insurance

More insurance problems. First, his walker was finally approved. It only took since April 3, when they sent the letter of MEDICAL NECESSITY, signed by the chairman of the dept. of orthopedics. Guess that doesn't mean much to them at the insurance company, that Jordan would not be walking right now if it weren't for the old, beat-up walker we borrowed from our PT. This walker is about $300. Does $300 mean a THING to a big insurance company?

Now the saga with getting the new orthotics approved is just too much to go into. The orthotics place tells me to call the insurance company. The ins. co. tells me to call the doctor. The dr's office tells me to call the ins. co. AND the orthotics place. Do you see the circle of this????? It is INFURIATING. This is the United States of America. We can't do better than this????????????????

The other really stupid thing about it is that if the ins. co. does not pay for these braces or keeps delaying paying for them, Jordan's feet might revert to how they were, and then the insurance co. will have to pay for another SURGERY at tens of thousands of dollars rather than the $2,000 the braces will cost!!!!!!! Does this make any sense? Do we have any preventative medicine in this country????????????

I am so disgusted. It is hard enough when your child even NEEDS to wear braces and use a walker. To have to go through all of this is disgusting. There is never any consideration for how a parent might FEEL having to do all this bullshit while also having to do the normal parenting things plus the doctor's visits. It's all a fight, a never-ending battle. And the people I get to talk to are the low-paid insurance processors, who don't have any power in this either. Yet they are the people I yell and fight with. I shouted, "Fuck you!" to one of them last week and hung up on her. They ask me, "Is there anything else I can help you with?" at the end of the conversation, and I usually say, "You could STILL help me with the information I need, which you didn't do."

Also, one of these insurance people told me that orthotics are only covered for diabetics. I was like, "Do you know what orthotics ARE? You're saying if a kid has spina bifida and can't walk without braces, Keystone won't allow him to walk???" Soooooooooo stupid. After "researching" this issue, she came back on the phone and said that braces can be approved for other conditions if the doctor authorizes them. Oh, no, I'm just thinking to myself, "Hm, wouldn't it be nice if Jordan had some nice ORTHOTICS?" I didn't get a recommendation from a DOCTOR.

Anyway, this whole thing is disgusting.

Disconnected

I always felt somewhat disconnected from people my age. In grade school, while the other girls played with Barbies, I played Little League baseball with the boys. In middle school, when the other girls talked about the weddings they'd have, the men they'd marry, I thought about finding a career. In high school, while the other girls put on makeup and dressed to impress the boys, I was mortified by the superficial. I ignored them and reread "Siddhartha."

But now as the mother of a child with disabilities, I feel the most disconnected from my peers that I've ever felt. Other mothers complain about "chasing" their 2-year-olds around, how tiring it is. But I cherish every step my son takes, and I would chase him forever.

Jordan was born with both hips and one knee dislocated and with clubfeet. Looking at his feet and legs in the beginning, it seemed impossible that he would ever walk. Doctors told us different things, most not so positive. As I lay in the recovery room after the c-section, one doctor told me Jordan may have a chromosomal disorder and would "be mentally retarded, have heart problems, and die before age 1."

But it turned out to not be so serious. He got the first casts on his feet when he was only 9 days old. Then at 2 weeks old, he started physical therapy two times a week. The casts were changed every week, then every 2 weeks. He had three orthopedic surgeries (plus two other ones!), each one more painful than the previous one for me, harder to watch as he grew older and more aware of what was going on, until he was able to break my heart by saying, "Boo boo hurts." Then braces—first starting all the way from his toes up to his hips, with this metal band that went around his waist like a belt, all to help him stand. A night, he wears the braces with the metal bar between his feet. This is to help keep his feet in position so they don’t revert to the positions they were in before surgery.

Then of course there has been the physical therapy. A lot of stretching, pushing him to stand up, pushing him to take tiny steps, many times moving his legs for him one by one until he got the feel of how his legs move. Even so he got the feel of his own legs and feet. They've been in plastic, metal, and fiberglass for so long, most of his life, that the feeling of just his bare legs must be strange to him. He loves putting on lotion himself at night. He could do it for hours at a time if you let him. He smiles so much as he rubs the lotion through his fingers and across his legs and feet, lined with more surgical scars than anyone of any age should have to have.

But he is also so happy. He lives his life to the fullest. He danced before he walked, and not just any dancing, but the throwing yourself around kind, the laughing hysterically kind. And at 21 months old, he seems to know that he has already done great things. Just 2 weeks ago, he took his first steps on his own. Some people may think it doesn't "count" because he uses braces and a walker, but to me, it's the most beautiful and amazing thing in the world watching him walk through the grass with the other kids.

So the other mothers can have their complaints. I will stick with the appreciation of every baby step, knowing that taking just one step at a time can get you everywhere you need to go.