Capacities and Capabilities

A strange thing about Jordan—or maybe the least strange thing about him—is that whatever people think he isn’t capable of doing is what he wants to excel at. He was born with multiple orthopedic issues such as dislocated hips, a dislocated knee, club feet, and the ability to only move one of his toes (the big toe on his left foot). He walks with a walker or forearm crutches (we call them “ski poles), and he wears braces.

He is very smart and verbal and always has been. But what he wants to excel in are physical things. He throws himself around, he fights with swords, he does stunts on his walker. He is already planning his fifth birthday party—9 months away—as a wrestling party, more specifically, a “smackdown” party. It’s going to take me these 9 months to convince him to have a different theme!

Over the summer, we went to a birthday party for a girl in his class. It was at one of those “bouncetown” places. Right when we got there, the birthday girl’s mother came over to us and said, “There are some things over there that Jordan can play with!” pointing to the “soft play” area for infants. There were about four little foamy pillow-like things for babies to play with on the floor. “Yeah, sure,” I thought. “Just watch him.” He then went and climbed up a huge slide using only his arms, used a rope to climb up another one of the bouncy things, and truly kept up with all the other kids.

Recently when we were going through a lot of stressful things with both my husband’s and my family, it was affecting Jordan at school. He “kept to himself” in the classroom, the teacher told us. But still, out on the playground, he was the usual leader, getting his classmates to trail after him while playing “cops,” and “arresting” nearly every kid on the playground.

Last week they had a bike-a-thon at his school to benefit St. Jude’s. We brought his arm-powered Amtryke in for him to use. He needed help getting around the track, but he told us he “won” the bike-a-thon. I don't want him to be deluded about his physical skills, but I do want his confidence to last.

“I’m wiggling my toe!” he said to me the other day. That was his first acknowledgement about the movement in his toes. But the interesting thing—he didn’t say, “I can’t move nine of my toes.” It was that he can move one of them. The old clichés apply—he’s teaching me more than I’m teaching him. How am I supposed to reconcile not liking it when people say that he is “inspirational” with my own feelings that he does inspire me? He does reveal things to me every day. I feel like I'm not doing any of this; I'm just along for the ride, his loyal follower.

Jordan's Dream

"I had a dream that they let me hand out the forks at school." That's what my 4-year-old son said yesterday.

"Do other kids hand out the forks at school?" I asked him.

"Yes."

"Do they take turns?"

"Yes."

"And you don't get a turn?"

"No."

OH, HELL NO.

His school, which started out great, has gone downhill lately, with teachers leaving all the time. It seems like every few weeks someone is gone and a new teacher is there. It's hard to keep up. Ever since this has been the case, he hasn't liked school as much. He is a very sociable kid, and what went from enthusiasm earlier in the year has turned into the opposite. Changing teachers so much is really affecting him, it seems.

He LOVES to help around the house. He loves doing the dishes with me, and I give him the heaviest pots to put away, the glass bowls, everything (except the sharp knives!!). He feeds the dogs and sweeps the floor. Of course, he cleans up his toys. So it's his DREAM to help out at school. Could my heart be breaking any more than this???????

My husband and I went in to talk to the teacher today. She said, "Okay, I'll do that" and went back to writing something. A weekend full of discussions about how to handle this, what to say, how to explain that we EXPECT INCLUSION, boils down to a dismissal by the teacher. "Are you satisfied with that?" I said loudly to my husband. "No," he said, and we continued to talk to her. He has a bag on his walker that helps him carry things. We expect him to be included just like anyone else. "Okay, I'll do that today," she said. TODAY? No, this should be an overall thing. I almost snatched up Jordan and took him out of there. He sat at a table nearby and was listening to what we said to her. He is still at the stage where he thinks his father and I can solve all the problems of the world. IF ONLY.

We talked to the co-director of the school, and she said she would observe the classroom today and then get back to us and then tell the teacher what changes she needs to make. This seems to be under control for the moment. We would switch him to another school, but if we do that every time he is discriminated against, would we be switching schools constantly? Can we do anything to get them to change? Do they need reminders from time to time? Or is it IMPOSSIBLE??????????????

He is 4 years old now. I do not look forward to all the fights we will have to keep having over his education for the next 14 years. But believe me, I am up for the fight. He is going to know that he will be included. He is going to DEMAND to be included. He is not going to be like me as a kid, shy and letting everyone walk all over him. He is going to continue to see us demand equal treatment, and if he doesn't get it, they are going to see us, hear us, over and over until they get it.

Postscript: Jordan gave out the forks today at school. It makes me cry to think about this simple thing being his dream. It also makes me cry that someday soon I won't be able to solve everything for him so easily. My boy is growing up--is the world ready for him???

Baby Feet

Baby feet. When you think of them, you think of something beautiful and amazing—tiny yet somehow strong, envisioning all the places that newborn baby might walk and all the things he might do in his life. A new beginning with new, soft, beautiful, adorable feet to use on the journey. You just want to kiss those cute wittle toes.

It all starts with the baby shower. The gift tags, gift bags, greeting cards—so many of them have pictures of tiny baby footprints on them. The mother-to-be might get a kit to press the baby’s feet into clay to make a keepsake of the footprints. Special frames are used in anticipation of the big event—the baby’s birth and the footprints, which can be framed for posterity or put into an album. 10 perfect fingers and 10 perfect toes. These frames often come with little poems:

Two little feet, ten little toes,
Leave their impressions today.
Soon they will wear two little shoes,
And be running and jumping at play.
Two little feet, too little time,
Before they are walking to school,
Kicking a rock, or skipping a rope,
Wading a puddle or jumping a pool.
Two little feet, one little child,
Will soon go their own way,
But footprints in my mind recall,
They stood here yesterday

Or short and simple:

Little hands, little feet
Pure and precious, and Oh So Sweet!

A baby makes footprints in our hearts
that never dim or fade.

Where ere a baby's little footprints are found,
There is precious and hallowed ground.

The pitter patter of little baby feet
is music to the ears and ever so sweet!

In parenting magazines, it seems that every single baby and toddler is shoeless and sockless. I did a little study of it recently, and it’s hard to turn 5 pages without seeing some baby feet! No one wants to cover up those precious little toes!

It was into this world that my son, Jordan, was born, a baby with clubfeet along with a dislocated knee and dislocated hips. It was hard to look at his little footprints on the piece of paper. The doctors immediately started saying how he “wouldn’t be much of a walker,” and they began casting his feet when he was 9 days old. He had two surgeries on each foot and one on his knee, all in the first 15 months of his life. Plus, physical therapy, braces, walkers, crutches. Instead of cute little socks or letting him go barefoot, my baby was in casts for almost the first year of his life, and after that, braces almost 24 hours a day, including the brace with a metal bar between the feet. When he was around 4, he had more casting done to align his feet again--with his condition, his feet keep trying to go back to how they were when he was born. They keep trying to adjust his feet until he stops growing, and then they will stay where they are when he's an adult.

When he was about 2 months old and all of this was so new to me, with so many doctors appointments and so many dire prognoses, one day we took a break and went to Babies R Us. We went into the nursing/changing room in the back. I loved that they had this little room set up for us. It was so comfortable, with sofas, a changing table, room to just sit back and relax. Feeling relaxed for the first time in a while, I looked up from feeding him for a minute, and right in front of us on the wall was a huge probably 5 foot by 8 foot poster, a close-up of baby feet! I couldn’t escape!

Many times seeing those photos of the cute baby feet--and even the feet of my friends' and relatives' kids, who always seem to go around barefoot--tore at my heart. Why was it so easy for everyone else? Why were these babies crawling and then walking, not using any devices, not using any braces, when they were still SUCH BABIES, while my son talked like a professor so early, gave us “lectures,” as he called them, at age 1½, knew all the words to book upon book of nursery rhymes before he was 2, started sounding out words at age 3?

Someday I'll jump through puddles,
Take a stroll or run a race.
Someday I'll walk across the street,
Or maybe walk in space,
Someday I'll scale a mountain,
Or I'll join a ballet corps.
Someday I'll walk a tightrope,
Or explore the ocean floor.
Someday these feet will do some things,
That only heaven knows,
But for today they're happy
Just to wiggle all their toes.

Some babies can’t wiggle their toes and will grow up never wiggling them. The only toe Jordan can move is his big toe on his left foot. He has no movement at all in his right foot. But he does jump through puddles—using a walker and braces. He does whatever he wants. He doesn’t know about the stress this has caused me, having him not fit into the “mold” of the “perfect baby” that is drummed into our heads. He is just himself—rough, tough, sensitive yet strong, hilarious, and “all boy.” I now look back at his baby footprints and see something different—the feet were so tiny and were not aligned perfectly, but they are the feet of MY little boy.

Just 2 weeks ago, he took his first steps without his walker or crutches. I was happy about it, but suddenly I realized that it didn’t mean as much to me as it once would have. I know now that the important thing is that he can get around independently, and whatever device he has to use to do that best is okay with me. The doctor is now talking about another surgery for Jordan's feet and knees. I am looking into nonsurgical options because I now wonder if all of this has been too much, trying to align things to make them LOOK good. But if they're working for him... It's a hard balance. I don't want there to be any damage to his knees or feet from walking the "wrong way," yet I don't want him to go through anymore surgeries if they're not totally necessary.

In the meantime, the doctor said that the braces with the bar between them really aren’t doing any good for him anymore. So for the first time in his life, he does not have something on his feet while he sleeps. I lie there next to him in bed and make sure his bare toes are touching my leg. They feel so cozy and soft, like they belong there. The beautiful, perfect toes of my little boy.