One Christmas, I asked Santa for a motorcycle. Not a real motorcycle, but a toy one I could ride around the neighborhood. All I wanted was to zip around with my friends. I wanted to keep up with them and get to where I was going super-fast. I wanted to be included and involved in whatever the neighborhood kids were doing. At the time, it seemed a motorcycle would help. Without it, my friends would have moved on to something else by the time I got there. They seemed so much bigger, older, and faster, and I wanted to be just like them.
It wasn’t too much to ask, was it?
On one particular Christmas morning, I woke up early, raced into my sister’s room (she always seemed to sleep longer on Christmas morning for whatever reason), and shook her awake. My parents were already downstairs…they said something about preparing a turkey, but that seemed odd for such an exciting day. It seemed they were always scurrying about doing something or other, always saying for me to be patient. Looking back, I get it now. But, when I was little, not so much.
The wait tortured me. My sister took her sweet time. My parents busied themselves with things downstairs. My bladder applied its usual morning wake-up pressure. I rushed to the bathroom, and then later returned to rouse my sister, who thankfully was now awake.
When THE moment finally arrived, Mom and Dad walked into the room and asked if we were ready.
HECK YEAH, WE’RE READY! IT’S CHRISTMAS MORNING!
My sister and I could see the glow of lights down below and our excitement soared. At the top of the stairs, Mom and Dad arranged us by age, oldest to youngest. UGH! That meant Dad went first, Mom second, my sister third, and me…an always frustrating last.
COME ON! COME ON! COME ON!
For whatever reason, my sister seemed concerned with me rushing past her, so she held out an arm and controlled my pace. The descent was so slow that I just sat and scooted down on my butt. Looking back, I’m glad my sister was there to help, because I would have fallen from excitement otherwise.
Once safely down the stairs, the roadblock lifted. We raced to the Christmas tree to find what Santa had delivered. I knew I had been good, so I hoped for everything I wanted.
And there it was…
My motorcycle!
A three-wheeled green beauty equipped with racing decals and fancy handlebars! Santa heard me! I jumped and screamed in excitement, then hopped on the hard-plastic seat. I revved the engine and crouched low in imagination. I turned to my parents, smiled, and then climbed off the motorcycle and gave them big hugs. It was a wonderful day!
I then claimed a spot on the floor and found presents with my name. I ripped them open as fast as I could. My hands and arms seemed to move in a blur. The wrapping paper flew in the air all around me. Life was good. It was the Christmas I had always dreamed!
That was then.
Christmas mornings are different for me now.
Much different.
Today, my parents usually wake me because I didn’t get to bed until the odd hours of the morning. That’s become my standard lately, playing video games and watching YouTube videos late into the night. I enjoy it because I can’t do much else, it seems. It’s frustrating, but I do what I can.
Nowadays, on Christmas mornings, my parents whisper in my ear that Christmas is here. I usually yawn and smile in return. I would love to stretch, but even that’s difficult. If I had been sleeping on my side, I must wait to be turned because I cannot do it by myself anymore. Once on my back, I smile again and nasally say Merry Christmas, and then ask for a hug. I love hugs! My parents remove my Bi-PAP mask, bend down in turn, and wrap their arms around me, and I do my best to return the favor. Thankfully, I don’t have to reach far, just a couple inches, enough for my hands to curl around them. They then put some socks and slippers on my feet and ask if I’m ready.
Uhhh, yeah! I am more than ready! But, uhhhh…I gotta go.
That’s when my parents nod their understanding. Mom goes to wake up my sister. Dad helps me aim into a bottle while I lie in bed. Once I’m done, Dad shimmies a sling underneath me and position the straps. He then brings in a Hoyer lift and hooks me up. I patiently wait again while Dad gets my power wheelchair and maneuvers it into my room. He then cranks the Hoyer lift and up I go. Slowly. Too slowly. Agonizingly slow for a Christmas morning! You see, usually it takes about 35 cranks to lift me. But, on Christmas, Dad likes to tease me by cranking super slow.
Come on, Dad! It’s Christmas! Hurry already!
After I am lifted high, Dad then rolls me away from the bed and pivots the lift towards my waiting wheelchair. I’m totally at his mercy at that point, and he always jokes around. He’ll stop midway and far from my wheelchair, and ask if I’m excited. I’ll respond loudly that I am, and he’ll resume pushing me towards my chair. He’ll then stop again to say…
Don’t you just hate it when someone leaves you hanging…especially on Christmas morning!
NOT FUNNY, DAD!!! GET ME DOWNSTAIRS!!!
We’ll laugh, but he always seems to laugh more. He’s cruel like that, you know. But, in a good way, because I know he loves me.
He’ll then position the Hoyer lift above my chair and gently lower me down. He’ll remove the sling (which always makes me slouch) and then reposition me in the chair. That process takes forever and includes body lifts, body shifts, bunched-shirt fixing, wedgie fixing, pant leg fixing, shoe fixing, leg and feet positioning, and repeat until comfort. But, it’s oh-so worth it to be comfortable in my chair because of the stupid compression fractures in my stupid back. By now, my Mom and sister are waiting on me this time.
My how times have changed.
I love my wheelchair! Though it stinks I have to use it, my wheelchair gives me control of my movement and that’s a great feeling! I can go where I want. So, the first thing I do on Christmas morning is zip to the balcony. There, my sister and I look down and then back to each other in mutual excitement. Christmas has arrived!
Now, instead of descending the stairs, we ride a small elevator. It seems to take forever and I silently urge it to move faster! Once down, I follow my sister (something about an age thing again) and we move fast to the family room. I need to be careful not to run over the dogs and cat.
I’ll park my chair in my favorite spot and wait for the gift-giving to begin. Because I can no longer pick up presents, my parents bring them to me. I can barely point to which present I want first, so my parents will point to one until I nod for them to pick it up. They’ll bring it to me so I can inspect it and feel its weight on my lap. Then I’ll nod again for them to help open the present. I do this because even the wrapping paper is too hard for me to tear apart anymore. It stinks, but I just can’t do it. How I hate Duchenne.
Anyway, my gifts usually include video games or movies. That’s about as much as I can really enjoy these days. Occasionally, I’ll get a book. But, I can’t even hold those anymore, or turn the pages. So, games and movies it is. I don’t really mind. I LOVE video games and movies. You should see my expanding collection!
Sometimes, Santa gets me clothes. Uhh, boring! Sometimes iTunes cards, which I also love. My stocking usually has candy, gum, Star Wars cards, football and baseball cards, or movie theater gift cards. Sometimes Five Guys and DQ gift cards, too. My relatives usually send me gift cards to my favorite store…Target! I love that store because they treat me so nice.
And so, the morning goes…
No longer do I ask for motorcycles of footballs or baseball gloves. No longer must I have fancy high-top sneakers. Those gifts (and days) are distant memories. In fact, the green motorcycle is currently collecting dust in basement storage. My parents want to give it to Goodwill or something. But, I’m not so sure if I want to give it up already.
I’ve got other plans.
You see, what I really, REALLY want for Christmas is for my stupid body to work. It’s getting weaker every day and I don’t like it. Not at all. Especially my lungs. I know doctors are working hard and they are making advances, so I want to be ready when the day comes (hence, the reason I hang onto the motorcycle). As much as I love video games, movies, and gift cards, they seem to be missing the awesome mobility my legs, arms, and hands could provide. If only my body would do what I want it to do. Maybe someday.
So, here I sit by the tree. Waiting. Hoping.
As I get older, I guess I need to move beyond the Santa thing. It’s hard because I still kind of believe. I love to hold his hand. I love to tell him what’s on my Christmas list. I just know that he listens. He says that he does.
But, for now, I’m thankful for what I have. I have a family that loves me. I have friends that care about me and laugh with me. I have pets that lick my face and sleep with me. I have video games and movies. I have a green motorcycle in the basement just waiting for me.
But, Santa, YOU know what I really want. I told you.
All I want for Christmas….ANY Christmas…is a cure for Duchenne so my stupid body can work again like I know it can.
That’s not too much to ask, is it?
It wasn’t too much to ask, was it?
On one particular Christmas morning, I woke up early, raced into my sister’s room (she always seemed to sleep longer on Christmas morning for whatever reason), and shook her awake. My parents were already downstairs…they said something about preparing a turkey, but that seemed odd for such an exciting day. It seemed they were always scurrying about doing something or other, always saying for me to be patient. Looking back, I get it now. But, when I was little, not so much.
The wait tortured me. My sister took her sweet time. My parents busied themselves with things downstairs. My bladder applied its usual morning wake-up pressure. I rushed to the bathroom, and then later returned to rouse my sister, who thankfully was now awake.
When THE moment finally arrived, Mom and Dad walked into the room and asked if we were ready.
HECK YEAH, WE’RE READY! IT’S CHRISTMAS MORNING!
My sister and I could see the glow of lights down below and our excitement soared. At the top of the stairs, Mom and Dad arranged us by age, oldest to youngest. UGH! That meant Dad went first, Mom second, my sister third, and me…an always frustrating last.
COME ON! COME ON! COME ON!
For whatever reason, my sister seemed concerned with me rushing past her, so she held out an arm and controlled my pace. The descent was so slow that I just sat and scooted down on my butt. Looking back, I’m glad my sister was there to help, because I would have fallen from excitement otherwise.
Once safely down the stairs, the roadblock lifted. We raced to the Christmas tree to find what Santa had delivered. I knew I had been good, so I hoped for everything I wanted.
And there it was…
My motorcycle!
A three-wheeled green beauty equipped with racing decals and fancy handlebars! Santa heard me! I jumped and screamed in excitement, then hopped on the hard-plastic seat. I revved the engine and crouched low in imagination. I turned to my parents, smiled, and then climbed off the motorcycle and gave them big hugs. It was a wonderful day!
I then claimed a spot on the floor and found presents with my name. I ripped them open as fast as I could. My hands and arms seemed to move in a blur. The wrapping paper flew in the air all around me. Life was good. It was the Christmas I had always dreamed!
That was then.
Christmas mornings are different for me now.
Much different.
Today, my parents usually wake me because I didn’t get to bed until the odd hours of the morning. That’s become my standard lately, playing video games and watching YouTube videos late into the night. I enjoy it because I can’t do much else, it seems. It’s frustrating, but I do what I can.
Nowadays, on Christmas mornings, my parents whisper in my ear that Christmas is here. I usually yawn and smile in return. I would love to stretch, but even that’s difficult. If I had been sleeping on my side, I must wait to be turned because I cannot do it by myself anymore. Once on my back, I smile again and nasally say Merry Christmas, and then ask for a hug. I love hugs! My parents remove my Bi-PAP mask, bend down in turn, and wrap their arms around me, and I do my best to return the favor. Thankfully, I don’t have to reach far, just a couple inches, enough for my hands to curl around them. They then put some socks and slippers on my feet and ask if I’m ready.
Uhhh, yeah! I am more than ready! But, uhhhh…I gotta go.
That’s when my parents nod their understanding. Mom goes to wake up my sister. Dad helps me aim into a bottle while I lie in bed. Once I’m done, Dad shimmies a sling underneath me and position the straps. He then brings in a Hoyer lift and hooks me up. I patiently wait again while Dad gets my power wheelchair and maneuvers it into my room. He then cranks the Hoyer lift and up I go. Slowly. Too slowly. Agonizingly slow for a Christmas morning! You see, usually it takes about 35 cranks to lift me. But, on Christmas, Dad likes to tease me by cranking super slow.
Come on, Dad! It’s Christmas! Hurry already!
After I am lifted high, Dad then rolls me away from the bed and pivots the lift towards my waiting wheelchair. I’m totally at his mercy at that point, and he always jokes around. He’ll stop midway and far from my wheelchair, and ask if I’m excited. I’ll respond loudly that I am, and he’ll resume pushing me towards my chair. He’ll then stop again to say…
Don’t you just hate it when someone leaves you hanging…especially on Christmas morning!
NOT FUNNY, DAD!!! GET ME DOWNSTAIRS!!!
We’ll laugh, but he always seems to laugh more. He’s cruel like that, you know. But, in a good way, because I know he loves me.
He’ll then position the Hoyer lift above my chair and gently lower me down. He’ll remove the sling (which always makes me slouch) and then reposition me in the chair. That process takes forever and includes body lifts, body shifts, bunched-shirt fixing, wedgie fixing, pant leg fixing, shoe fixing, leg and feet positioning, and repeat until comfort. But, it’s oh-so worth it to be comfortable in my chair because of the stupid compression fractures in my stupid back. By now, my Mom and sister are waiting on me this time.
My how times have changed.
I love my wheelchair! Though it stinks I have to use it, my wheelchair gives me control of my movement and that’s a great feeling! I can go where I want. So, the first thing I do on Christmas morning is zip to the balcony. There, my sister and I look down and then back to each other in mutual excitement. Christmas has arrived!
Now, instead of descending the stairs, we ride a small elevator. It seems to take forever and I silently urge it to move faster! Once down, I follow my sister (something about an age thing again) and we move fast to the family room. I need to be careful not to run over the dogs and cat.
I’ll park my chair in my favorite spot and wait for the gift-giving to begin. Because I can no longer pick up presents, my parents bring them to me. I can barely point to which present I want first, so my parents will point to one until I nod for them to pick it up. They’ll bring it to me so I can inspect it and feel its weight on my lap. Then I’ll nod again for them to help open the present. I do this because even the wrapping paper is too hard for me to tear apart anymore. It stinks, but I just can’t do it. How I hate Duchenne.
Anyway, my gifts usually include video games or movies. That’s about as much as I can really enjoy these days. Occasionally, I’ll get a book. But, I can’t even hold those anymore, or turn the pages. So, games and movies it is. I don’t really mind. I LOVE video games and movies. You should see my expanding collection!
Sometimes, Santa gets me clothes. Uhh, boring! Sometimes iTunes cards, which I also love. My stocking usually has candy, gum, Star Wars cards, football and baseball cards, or movie theater gift cards. Sometimes Five Guys and DQ gift cards, too. My relatives usually send me gift cards to my favorite store…Target! I love that store because they treat me so nice.
And so, the morning goes…
No longer do I ask for motorcycles of footballs or baseball gloves. No longer must I have fancy high-top sneakers. Those gifts (and days) are distant memories. In fact, the green motorcycle is currently collecting dust in basement storage. My parents want to give it to Goodwill or something. But, I’m not so sure if I want to give it up already.
I’ve got other plans.
You see, what I really, REALLY want for Christmas is for my stupid body to work. It’s getting weaker every day and I don’t like it. Not at all. Especially my lungs. I know doctors are working hard and they are making advances, so I want to be ready when the day comes (hence, the reason I hang onto the motorcycle). As much as I love video games, movies, and gift cards, they seem to be missing the awesome mobility my legs, arms, and hands could provide. If only my body would do what I want it to do. Maybe someday.
So, here I sit by the tree. Waiting. Hoping.
As I get older, I guess I need to move beyond the Santa thing. It’s hard because I still kind of believe. I love to hold his hand. I love to tell him what’s on my Christmas list. I just know that he listens. He says that he does.
But, for now, I’m thankful for what I have. I have a family that loves me. I have friends that care about me and laugh with me. I have pets that lick my face and sleep with me. I have video games and movies. I have a green motorcycle in the basement just waiting for me.
But, Santa, YOU know what I really want. I told you.
All I want for Christmas….ANY Christmas…is a cure for Duchenne so my stupid body can work again like I know it can.
That’s not too much to ask, is it?
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