Of Pirates, Battles, and Moms.

IMG_0147Tonight I went with Jax and a friend to see a Pirates game when we found ourselves in Pennsylvania on vacation. Not finding any Handicapped Parking near the PNC Stadium, we parked in a garage a short jaunt away. Let me correct that, it would have been a short jaunt for anyone else, but not having Jax’s scooter with us, those blocks might as well have been a mile hike up the side of the bluffs.  We hadn’t planned to go, a friend surprised us with tickets. Still, I was ill prepared, having left even his walking sticks in the hotel.

Jax is beginning to remind me of an old man when he walks long distances. I know he has the sensation of pain and numbness in his legs. Still, he treks forth like a trooper–from now on, this is his battle. You’d never hear him complain, except occasionally to me, when he feels he can no longer go on. He is no different than any person with dwarfism; don’t complain, suck it up, and do it. I am no different than many of the moms, many of whom find themselves “stuck” in one spot until their child is able to move on. We have two choices: wait patiently, or carry them.

Now remember– LPs with Jax’s condition cannot wrap their legs around you, like an average stature child. They also carry their mass in the middle of their body. Considering some moms have found themselves carrying their child as old as perhaps 16, we are looking at the equivalent of maybe 80 to well over 100 pound sack of potatoes. The weight is one thing, the chance of tripping and falling is my biggest fear. It has happened in the past as it can be difficult to see where you are going when carrying a person in that fashion.

He did great on the way there, stopping about every block to regain the feeling in his legs, and rid himself of the sensation of pain. (See my article on spinal claudication.) Then he was chugging along again on his way to the ballgame. Once we were there, we encountered the stairs up, then down to the seats. Whenever he climbs stairs and is that unstable, I walk behind him in case he falls. If we are descending stairs, I walk in front. This way I hope to break his fall, should he take a tumble. We had great seats down front. He could see everything from behind home plate.image

The game was good, even though the Pirates lost to Detroit. Our friend was understandably disappointed, after the game; it was time to head out of the crowded stadium. I climbed the stairs behind him noting he was limping already.

“You okay, buddy?”

“I’m fine mom.” (The usual answer).

“Maybe we should wait once we get outside, Lee could go get the car.” I pushed.

“Mom, I’m fine…really. I can make it back, if I just stop for a second at the lights.”

So we headed out of the building and onto the bridge which crosses over the river. It wasn’t long before I realized he wasn’t doing as well.

“Hows about a piggy back ride.” Offered my friend. He’s a pretty big guy, and it sounded like a good solution.

Half way across the bridge, my friend needed a break from Jax’s strangle hold around his neck.  Jax walked a bit but wasn’t up to speed. I am not sure what possessed me to be the hero, but I instinctively stopped right there in the crowd, (which continued around us like a river around a rock), I scooped him up and began walking. Oh, my! He was a lot heavier than the last time I carried him! That path over the river seemed to go on forever.

“You okay, ma?”

I crossed the bridge.

“I can hear you panting, mom.”

“Let me take over.” My friend pleaded.

I crossed the street.

Something inside of me said: my child, my responsibility.

“I can do this.” I answered.

I kept on down the next block, being careful where I walked with my sandals. Navigating around the sunken bricks in the Pittsburgh sidewalks. Falling would be very bad for him. I walked to within close proximity to the parking garage. We waited at the crosswalk…is this light broken or what?  My airway was burning as Jax tried to hang on around my neck. I crossed the street and felt myself sway a bit.   That’s when I felt it was time to let him walk the rest of the way. It was kind of a rush, though; I felt pride in myself that I hauled him such a distance.

I teased my friend, ” I carried him twice as far as you!”  IMG_0104

“Yes you did.” He answered, and reminded me he would have taken over.

That is when I realized something that rattled me. I did that not so much out of motherly love, as out of vanity. I had no business carrying him that far in the dark on a crowded city street. I had fallen a couple years prior while carrying him which resulted in an MRI for him, and a torn ligament for me. Luckily he wasn’t hurt that time. This time I felt that I basically put my child in danger to prove I could do it. I took advantage of this opportunity to make myself feel better for being ill prepared. Worst, I left him to rely on others rather than give him the tools to be independent.

Before you throw sympathy my way, remember I have a chronic condition. That means I knew I should not be carrying him because I may not be able to. My success at physical training had gone to my head and I used my kid to stroke my own ego.

Lesson learned.

I was pretty sore the next day…nothing compared to the danger I put him in. We had a talk about Jax taking the responsibility to be sure he has the tools he needs to be independent with him. I apologized to him, and let him know that it is time he stand up and refuse to be dependent on others. Would it have been so bad to take the walk slow, with breaks in between? To let our friend run and get the car?

Bottom line is: this is his life. It is a good life. It just sometimes takes a little patience, some tools, some ingenuity, and encouragement. Then I am truly preparing him for his life ahead.