So while we were at PUDM, Alyssa admitted that she hadn’t given Naomi any kind of background on the trip we were taking. She didn’t bother to explain that it was an overnight event that was raising money for Riley Hospital for Children.
So, while we were there, I gave a quick synopsis.
My story went a little like this:
I have a cousin who has a daughter who has to go to Riley every few months, sometimes every six weeks. This child has a feeding tube, she’s in a wheelchair, she has a shunt. She had open heart surgery when she was a few hours old. She’s had several other surgeries over the year. She’ll be thirteen this month and she’s had more medical procedures done to her in her thirteen years than most of us will have over the span of our entire lives.
Her parents do not have insurance. She, the child, is probably on the state-run Medicare/aid program but it’s not very good coverage.
Riley Hospital has never, not once, turned S away. They’ve never denied her care. She’s always treated with the utmost professionalism and love by every single doctor, nurse, caregiver in that hospital.
They can do this because of these dance marathons. The dance marathons raise money so that every single sick or injured child who enters that hospital receives the care they deserve, not the care they can afford.
That’s why these college kids are out there raising money, dancing their butts off, spending an entire weekend getting emotionally and physically exhausted, so that kids like Olivia and Riley and Sabella get the care they need to live their greatest lives.
When I finished speaking, Alyssa, Olivia, Naomi, Morgan (Olivia’s buddy) were silent. I think Morgan might have wiped away a tear. They all just sat there for a minute and then Morgan said, “That might be the best explanation of dance marathons I’ve heard yet.”
That was nice of her to say.
I wanted to give Alyssa and Naomi a background and an understanding of what it means to put your own interests aside for even one weekend. I know that for most dancers and committee members, the dance marathon is a season, not a weekend. These people work so hard all year long. They raise money all year long. They work on dances, food, programs, events and putting the kids first all year long.
I am so grateful to every single person who has ever participated in a dance marathon. As a Riley family, we are so happy to be included, to be able to share our story and remind every person there why they’re doing what they’re doing. It is our honor and privilege to encourage the dancers to jump one more time, to stay awake one more hour, to raise one more dollar. Sabella can’t go to the IUDM, the noise would be too much for her. But I’m going to encourage her mom to look into taking her to PUDM. They make it more comfortable for the kids with sensory issues to participate without discomfort. If they can’t do it, we will continue to do it for kids like Sabella, who’s story would inspire so many, if only they could hear even the short version.
Back in the day when I was a dancer at the IUDM, I remember we often said, “We dance because they can’t.”
Some of them can and they do. But those who can’t? We’ll keep on dancing for them.
A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.
Showing posts with label Dance Marathon. Show all posts
Showing posts with label Dance Marathon. Show all posts
Monday, November 19, 2018
Thursday, November 15, 2018
Driving - aka Another Rant
I’m not a nice person when I’m driving. I’ve mentioned this before, in detail.
But this weekend, poor, sweet Naomi got to experience two days in a row of more than three hours in a car with me.
I’m pretty sure she thinks I’m evil personified at this point.
I’d be fine with driving anywhere and everywhere if other cars and people would just get out of my way.
And let me be fair here and say that US 24 between Wabash, Indiana and where it turns to join with US 35 is a nice, desolate highway. It was so nice to be able to just drive and pretend we were in the midst of a zombie apocalypse, just the four of us, looking for a place to hunker down and fight off the living dead.
But the closer we got to West Lafayette, the more the living inserted themselves into my lovely zombie fantasy.
We got to the rec center where the dance marathon was being held. Alyssa didn’t like the first parking spot I found and so I drove around to find another. A bus was parked, with its flashers on, along the roundabout in front of the rec center. There were no people getting on or off the bus. There was no one to be seen around the bus, living dead or alive. I waited, perhaps not so patiently, for a few minutes (it may have been seconds, who’s counting?) and then whipped around that stupid bus (it was a FREAKING BUS!) to make my way out of the roundabout and into the adjacent parking lot.
We drove forever, with me muttering that I hoped we didn’t have to walk a damn mile to get back to the rec center.
We finally found a parking spot, it was only a half mile from the rec center (I am, obviously, exaggerating, it was probably only a quarter of a mile) and I bitched and limped and moaned the entire walk to the center. We all had to pee and we’d been in the car for about five days at that point. It was time to be done driving.
We hung out at the rec center for a few hours. I only had to walk the three miles to the car once to get some medicine for Olivia, who was achy and perhaps a bit feverish from the drive. She bounced back pretty fast and had a lovely time getting presents and being doted upon.
We left the rec center around 8:30 or so and headed to the hotel.
Now, I’ve been to West Lafayette about ten times in the past ten or so years. But it’s only once a year and I only ever make it to the campus by sheer luck and tenacity. We stayed in the Union Club hotel. Alyssa (or maybe it was Naomi) put the address to the Union Club into their phone and used the GPS to guide me. It was only a mile or so away. But as everyone knows, college campuses have an insane amount of one-way streets. Why? Who the hell knows, because engineers are stupid, that’s why.
The GPS was stupid too. It wanted me to go the opposite direction of the way I needed to go, so I ignored it and went the way I knew I needed to go. The GPS dealt and recalculated. I can be smarter than a computer sometimes. Just saying.
We’d only gone about two blocks when someone fool in a car ahead of me wanted to parallel park. Growl.
I whipped around them too. They may have honked at me. I don’t know. I didn’t hear it. Either A or N mentioned hearing honking but at that point, I didn’t especially care about a parallel parking fool’s honking horn. I just wanted to get to the stupid hotel. At that point, Naomi remarked that she could tell I’d driven in the city before. She might have been commenting that I need to chill the hell out but she was too polite to actually say it in those exact words.
The GPS sent me around the block once and tried to do it twice but I was, once again, smarter than the computer. I found the parking garage across the street from the hotel and then proceeded to go up and down the damn aisles looking for a spot that wasn’t reserved for campus vehicles or tiny cars (who is driving these tiny cars and why are there so many parking spaces reserved for them? I mean, I have NEVER seen a tiny car parked in those tiny car parking spaces…just saying (okay, just bitching but whatever!)
Once we were parked in the ridiculously narrow spaces in which no other cars had managed to pull into correctly, we all wiggled out of the car with our doors barely opened because we’re so very conscientious of other people’s property and we didn’t want to ding the doors of the cars parked next to us even though they kind of deserved it with the way wonky way they parked. Sigh. Whew. So much annoyance for one chubby mumsy.
Then we had to get all the crap out of the back of the car. I always overpack. Why? I should know better and yet…I don’t. I pulled a wheeled suitcase that had my and Olivia’s clothes. I carried a cooler with Liv’s antibiotic in it and the shoulder bag that had our bathroom gear (HBA items, if you will.) Alyssa carried the heavy-ass snack bag along with her own backpack of clothes and HBA items. Olivia wore a backpack with her entertainment items and carried the gift bag she’d received at the dance marathon.
Naomi carried her bag and her coat and I don’t even remember what all she carried because it was all so very insane what all we were all carrying. And it was flipping cold. And it was dark and I was tired and we were all hungry and yes, I was still very annoyed with the entire world. Come on zombie apocalypse!
Alyssa tried to get Olivia to carry the blanket that we always have in the car. Olivia was not having it. She insisted she was carrying quite enough, thank you very much. She does have tiny hands, you know.
Alyssa relented and carried the stupid blanket herself. We trudged across the street (after waiting for traffic because as you know, there is ALWAYS traffic) and made our way into the hotel.
We were on the third floor. We had to wind our way through the halls of the hotel just to find the elevator, which was quite possibly the tiniest elevator ever invented. My big ol’ butt barely fit inside that thing once the other three and all our luggage was inside.
We finally, FINALLY made it to our room. Yay!!!! We dumped our stuff, Alyssa and Naomi started scanning their phones for a pizza place that would deliver to our location. Olivia took off her boots and socks and claimed her bed, climbing in and snuggling up under the blanket she’d refused to carry from the car.
I apologized to all and headed to the bathroom to…um, you know, it’s not necessary to share EVERYTHING. You know? Right.
After the pizza was delivered and eaten, Olivia settled in and was asleep before 10, which is good because yeah, she’s still sick. What the hell were we even doing there? I should have stayed home with this poor sick child and let her relax at home instead of dragging her halfway across Indiana and back in the span of twenty-four hours.
Mother of the freaking year here.
The next morning, all of twelve hours after schlepping all of our crap from the car to the hotel, we got to do it all over again. We headed back to the dance marathon to see the closing ceremony and the reveal of the amount raised for Riley Hospital for Children. It was neat and fun and totally worth it.
We hit the road after 10am because the McD’s was insanely busy and we had to go in because O wanted pancakes. Which is fine. It’s FINE! I wasn’t going to let that child try to eat pancakes in my car. I didn’t want to be wiping syrup off the sunroom for a month. The sausage burritos were totally worth the wait.
Once we were finally back on US 25N aka Hoosier Heartland Highway, I was able to settle back into my zombie apocalypse fantasy and enjoy the drive home.
We’d been in the car for maybe two hours when Olivia sighed and said, “I feel like I’ve been in this car for twenty four hours.”
Oh, kid do I feel you.
We’ve been home for several days and my hips still hurt from sitting in that car for so many hours over the last couple of weeks.
On the bright side, I don’t have to drive forever to see Julie again this coming weekend. Only too bad for her and her family, they DO have to drive all those miles to come all the way up here. And interstate 69 is not the most excellent road for pretending to be outrunning a hoard of zombies.
But this weekend, poor, sweet Naomi got to experience two days in a row of more than three hours in a car with me.
I’m pretty sure she thinks I’m evil personified at this point.
I’d be fine with driving anywhere and everywhere if other cars and people would just get out of my way.
And let me be fair here and say that US 24 between Wabash, Indiana and where it turns to join with US 35 is a nice, desolate highway. It was so nice to be able to just drive and pretend we were in the midst of a zombie apocalypse, just the four of us, looking for a place to hunker down and fight off the living dead.
But the closer we got to West Lafayette, the more the living inserted themselves into my lovely zombie fantasy.
We got to the rec center where the dance marathon was being held. Alyssa didn’t like the first parking spot I found and so I drove around to find another. A bus was parked, with its flashers on, along the roundabout in front of the rec center. There were no people getting on or off the bus. There was no one to be seen around the bus, living dead or alive. I waited, perhaps not so patiently, for a few minutes (it may have been seconds, who’s counting?) and then whipped around that stupid bus (it was a FREAKING BUS!) to make my way out of the roundabout and into the adjacent parking lot.
We drove forever, with me muttering that I hoped we didn’t have to walk a damn mile to get back to the rec center.
We finally found a parking spot, it was only a half mile from the rec center (I am, obviously, exaggerating, it was probably only a quarter of a mile) and I bitched and limped and moaned the entire walk to the center. We all had to pee and we’d been in the car for about five days at that point. It was time to be done driving.
We hung out at the rec center for a few hours. I only had to walk the three miles to the car once to get some medicine for Olivia, who was achy and perhaps a bit feverish from the drive. She bounced back pretty fast and had a lovely time getting presents and being doted upon.
We left the rec center around 8:30 or so and headed to the hotel.
Now, I’ve been to West Lafayette about ten times in the past ten or so years. But it’s only once a year and I only ever make it to the campus by sheer luck and tenacity. We stayed in the Union Club hotel. Alyssa (or maybe it was Naomi) put the address to the Union Club into their phone and used the GPS to guide me. It was only a mile or so away. But as everyone knows, college campuses have an insane amount of one-way streets. Why? Who the hell knows, because engineers are stupid, that’s why.
The GPS was stupid too. It wanted me to go the opposite direction of the way I needed to go, so I ignored it and went the way I knew I needed to go. The GPS dealt and recalculated. I can be smarter than a computer sometimes. Just saying.
We’d only gone about two blocks when someone fool in a car ahead of me wanted to parallel park. Growl.
I whipped around them too. They may have honked at me. I don’t know. I didn’t hear it. Either A or N mentioned hearing honking but at that point, I didn’t especially care about a parallel parking fool’s honking horn. I just wanted to get to the stupid hotel. At that point, Naomi remarked that she could tell I’d driven in the city before. She might have been commenting that I need to chill the hell out but she was too polite to actually say it in those exact words.
The GPS sent me around the block once and tried to do it twice but I was, once again, smarter than the computer. I found the parking garage across the street from the hotel and then proceeded to go up and down the damn aisles looking for a spot that wasn’t reserved for campus vehicles or tiny cars (who is driving these tiny cars and why are there so many parking spaces reserved for them? I mean, I have NEVER seen a tiny car parked in those tiny car parking spaces…just saying (okay, just bitching but whatever!)
Once we were parked in the ridiculously narrow spaces in which no other cars had managed to pull into correctly, we all wiggled out of the car with our doors barely opened because we’re so very conscientious of other people’s property and we didn’t want to ding the doors of the cars parked next to us even though they kind of deserved it with the way wonky way they parked. Sigh. Whew. So much annoyance for one chubby mumsy.
Then we had to get all the crap out of the back of the car. I always overpack. Why? I should know better and yet…I don’t. I pulled a wheeled suitcase that had my and Olivia’s clothes. I carried a cooler with Liv’s antibiotic in it and the shoulder bag that had our bathroom gear (HBA items, if you will.) Alyssa carried the heavy-ass snack bag along with her own backpack of clothes and HBA items. Olivia wore a backpack with her entertainment items and carried the gift bag she’d received at the dance marathon.
Naomi carried her bag and her coat and I don’t even remember what all she carried because it was all so very insane what all we were all carrying. And it was flipping cold. And it was dark and I was tired and we were all hungry and yes, I was still very annoyed with the entire world. Come on zombie apocalypse!
Alyssa tried to get Olivia to carry the blanket that we always have in the car. Olivia was not having it. She insisted she was carrying quite enough, thank you very much. She does have tiny hands, you know.
Alyssa relented and carried the stupid blanket herself. We trudged across the street (after waiting for traffic because as you know, there is ALWAYS traffic) and made our way into the hotel.
We were on the third floor. We had to wind our way through the halls of the hotel just to find the elevator, which was quite possibly the tiniest elevator ever invented. My big ol’ butt barely fit inside that thing once the other three and all our luggage was inside.
We finally, FINALLY made it to our room. Yay!!!! We dumped our stuff, Alyssa and Naomi started scanning their phones for a pizza place that would deliver to our location. Olivia took off her boots and socks and claimed her bed, climbing in and snuggling up under the blanket she’d refused to carry from the car.
I apologized to all and headed to the bathroom to…um, you know, it’s not necessary to share EVERYTHING. You know? Right.
After the pizza was delivered and eaten, Olivia settled in and was asleep before 10, which is good because yeah, she’s still sick. What the hell were we even doing there? I should have stayed home with this poor sick child and let her relax at home instead of dragging her halfway across Indiana and back in the span of twenty-four hours.
Mother of the freaking year here.
The next morning, all of twelve hours after schlepping all of our crap from the car to the hotel, we got to do it all over again. We headed back to the dance marathon to see the closing ceremony and the reveal of the amount raised for Riley Hospital for Children. It was neat and fun and totally worth it.
We hit the road after 10am because the McD’s was insanely busy and we had to go in because O wanted pancakes. Which is fine. It’s FINE! I wasn’t going to let that child try to eat pancakes in my car. I didn’t want to be wiping syrup off the sunroom for a month. The sausage burritos were totally worth the wait.
Once we were finally back on US 25N aka Hoosier Heartland Highway, I was able to settle back into my zombie apocalypse fantasy and enjoy the drive home.
We’d been in the car for maybe two hours when Olivia sighed and said, “I feel like I’ve been in this car for twenty four hours.”
Oh, kid do I feel you.
We’ve been home for several days and my hips still hurt from sitting in that car for so many hours over the last couple of weeks.
On the bright side, I don’t have to drive forever to see Julie again this coming weekend. Only too bad for her and her family, they DO have to drive all those miles to come all the way up here. And interstate 69 is not the most excellent road for pretending to be outrunning a hoard of zombies.
Friday, November 2, 2018
Fitting It All In
These next few weeks are going to be busy. Livie and I leave for Bloomington immediately after school/work on Friday, November 2 for the IUDM. We’ll be there until Sunday morning. We’ll stop in Auburn (a town about 40 minutes from home) and buy groceries on our way home.
When we get home, I’ll unload the groceries, the luggage, start some laundry and head to Defiance, where Alyssa will be performing in an honors choir.
The weekend of November 10-11, we’re all (all being me, Liv, Lyss and Naomi) heading to West Lafayette for the PUDM. That’s only Saturday night and into Sunday so we can pack on Friday night and leave around 11 or noon on Saturday.
The weekend after that is the school play, which is Thursday, Friday and Saturday. I’ve signed up to do hair and makeup so I’ll be just as busy as Alyssa in the hours before the play. I also signed up to take food for the actors on Thursday, yay for them, getting to eat something I cook. Ha!
The weekend after the play is Thanksgiving and then we have Olivia’s birthday the Tuesday after Thanksgiving. Whew.
Along with all this, obviously, I’m back to working full-time, 40+ hours a week. That leaves little time for things like, oh, cleaning the house, laundry, groceries (I’m figuring that one out.) Alyssa needs a costume for the play that is in three weeks. I need to schedule flu shots for the entire family. I have a mammogram next Monday, I’m pretty sure the girls have orthodontic appointments Tuesday. My birthday is Wednesday.
So much to do!!!
I’ve been trying to chip away at the list. I hit up Good Will on Tuesday to try and find costume items for Alyssa’s Customer #2 character. They’re doing The Little Shop of Horrors, which is set in the early-ish 1960s. I kind of figure Customer #2 is somewhere in her mid to late twenties. I spent maybe ten minutes in Good Will and came out with a wool skirt, a cardigan and a button up blouse, all varying shades of beige. Alyssa told me several times, “I’m not supposed to look nice, the shop is on Skid Row.”
So yes, beige it is.
My mom has some brown shoes that are perfect with the costume and we’re set. It only cost me $11, which I have to say, I’m very proud of. Go me!!
Now we just have to figure out how we’re going to do her hair. That ought to be fun.
I’m tired just thinking about all this. Alas, I guess I will sleep on Friday, November 23rd. I’m penciling it in on the calendar just so we don’t schedule anything else at this point.
When we get home, I’ll unload the groceries, the luggage, start some laundry and head to Defiance, where Alyssa will be performing in an honors choir.
The weekend of November 10-11, we’re all (all being me, Liv, Lyss and Naomi) heading to West Lafayette for the PUDM. That’s only Saturday night and into Sunday so we can pack on Friday night and leave around 11 or noon on Saturday.
The weekend after that is the school play, which is Thursday, Friday and Saturday. I’ve signed up to do hair and makeup so I’ll be just as busy as Alyssa in the hours before the play. I also signed up to take food for the actors on Thursday, yay for them, getting to eat something I cook. Ha!
The weekend after the play is Thanksgiving and then we have Olivia’s birthday the Tuesday after Thanksgiving. Whew.
Along with all this, obviously, I’m back to working full-time, 40+ hours a week. That leaves little time for things like, oh, cleaning the house, laundry, groceries (I’m figuring that one out.) Alyssa needs a costume for the play that is in three weeks. I need to schedule flu shots for the entire family. I have a mammogram next Monday, I’m pretty sure the girls have orthodontic appointments Tuesday. My birthday is Wednesday.
So much to do!!!
I’ve been trying to chip away at the list. I hit up Good Will on Tuesday to try and find costume items for Alyssa’s Customer #2 character. They’re doing The Little Shop of Horrors, which is set in the early-ish 1960s. I kind of figure Customer #2 is somewhere in her mid to late twenties. I spent maybe ten minutes in Good Will and came out with a wool skirt, a cardigan and a button up blouse, all varying shades of beige. Alyssa told me several times, “I’m not supposed to look nice, the shop is on Skid Row.”
So yes, beige it is.
My mom has some brown shoes that are perfect with the costume and we’re set. It only cost me $11, which I have to say, I’m very proud of. Go me!!
Now we just have to figure out how we’re going to do her hair. That ought to be fun.
I’m tired just thinking about all this. Alas, I guess I will sleep on Friday, November 23rd. I’m penciling it in on the calendar just so we don’t schedule anything else at this point.
Tuesday, November 8, 2016
Two Buddies!
Of all the dance marathons we’ve attended over the years, I think IUDM 2016 might go down in history as the best one yet.
We arrived on Friday evening and after a decent four and a half hour drive (other than a few harrowing miles where the setting sun was blinding all the drivers and made for a bit of stressful driving) we decided to just hang out in our hotel room for the rest of the night.
Alyssa and I were even able to watch Z Nation as it aired rather than on Monday afternoon on DVR. That was sort of awesome and in the previews…there was Vasquez…yay!!
Anyway! Yes, we got up fairly early and headed to the dance marathon on Saturday morning. When we got there we expected to meet with our family ‘Buddy.’ This is a student who has been assigned to us, the person who will hang out with the girls the entire time we’re there, accompany us to the stage when it’s time to tell our story and just basically be the liaison for us for whatever we might need.
Every person we’ve ever worked with as a Buddy at both IU and Purdue has been amazing.
But this year…this year was the best one yet because both Olivia AND Alyssa got a buddy. There were two young women waiting for us to arrive on Saturday morning. Becca and Kylie were there to greet us, they had gifts for Alyssa and Olivia and they were so kind and thoughtful and good at being buddies. They made my girls feel like they were the most important people in that entire tennis center.
I think having a buddy specifically for her meant the world to Alyssa. In years’ past, Alyssa has always been treated well by the buddies but this year, she had Kylie all to herself. And having someone who was dedicated to making sure she had a good time was awesome for her.
I’m not sure everyone realizes how hard it can be to be the ‘typical’ sibling of a special needs kid. But Kylie wasn’t there for Olivia. She was there for Alyssa and it was so great to see Alyssa blossom under that attention.
Of course Becca was great with Olivia. She went in that bounce house more often than I can count and she was right by O’s side the entire time we were at the dance marathon. They were both always nearby, ready to do whatever the girls wanted or needed.
My mom asked at one point how people were chosen to be Riley Buddies. We were told that there is a long list of people who apply for the committee on which the Buddies serve. Not everyone who applies to be a buddy gets to be one.
We have always been so lucky with the young women who get assigned to our family but this year, having Alyssa get her very own buddy was the best thing of all.
It amazes me that these events manage to improve year after year. You’d think that at some point they’d hit the pinnacle of perfection, right? I mean, at some point there will be no way to improve, right? Maybe this year was that point. It certainly felt like it for us.
I am sending out huge thanks to both Becca and Kylie into the universe. May amazing things come to these beautiful, amazing young women who gave so selflessly last weekend to make my girls’ time so special.
We arrived on Friday evening and after a decent four and a half hour drive (other than a few harrowing miles where the setting sun was blinding all the drivers and made for a bit of stressful driving) we decided to just hang out in our hotel room for the rest of the night.
Alyssa and I were even able to watch Z Nation as it aired rather than on Monday afternoon on DVR. That was sort of awesome and in the previews…there was Vasquez…yay!!
Anyway! Yes, we got up fairly early and headed to the dance marathon on Saturday morning. When we got there we expected to meet with our family ‘Buddy.’ This is a student who has been assigned to us, the person who will hang out with the girls the entire time we’re there, accompany us to the stage when it’s time to tell our story and just basically be the liaison for us for whatever we might need.
Every person we’ve ever worked with as a Buddy at both IU and Purdue has been amazing.
But this year…this year was the best one yet because both Olivia AND Alyssa got a buddy. There were two young women waiting for us to arrive on Saturday morning. Becca and Kylie were there to greet us, they had gifts for Alyssa and Olivia and they were so kind and thoughtful and good at being buddies. They made my girls feel like they were the most important people in that entire tennis center.
I think having a buddy specifically for her meant the world to Alyssa. In years’ past, Alyssa has always been treated well by the buddies but this year, she had Kylie all to herself. And having someone who was dedicated to making sure she had a good time was awesome for her.
I’m not sure everyone realizes how hard it can be to be the ‘typical’ sibling of a special needs kid. But Kylie wasn’t there for Olivia. She was there for Alyssa and it was so great to see Alyssa blossom under that attention.
Of course Becca was great with Olivia. She went in that bounce house more often than I can count and she was right by O’s side the entire time we were at the dance marathon. They were both always nearby, ready to do whatever the girls wanted or needed.
My mom asked at one point how people were chosen to be Riley Buddies. We were told that there is a long list of people who apply for the committee on which the Buddies serve. Not everyone who applies to be a buddy gets to be one.
We have always been so lucky with the young women who get assigned to our family but this year, having Alyssa get her very own buddy was the best thing of all.
It amazes me that these events manage to improve year after year. You’d think that at some point they’d hit the pinnacle of perfection, right? I mean, at some point there will be no way to improve, right? Maybe this year was that point. It certainly felt like it for us.
I am sending out huge thanks to both Becca and Kylie into the universe. May amazing things come to these beautiful, amazing young women who gave so selflessly last weekend to make my girls’ time so special.
Monday, October 24, 2016
Non-Verbal
Olivia and I loaded up the car on Saturday and drove 162 miles from home to Purdue University for a dance marathon to raise money for Riley Hospital for Children.
Fun was had by all and it was great.
But…the time leading up to the trip was fraught with anxiety on my part.
See, this was the first time O and I had done this kind of thing alone. Usually Alyssa goes with us. But this year, she wanted to stay home and attend the birthday/Halloween party of one of her friends.
I figured that at thirteen years old, she’s old enough to make that kind of call and since Tom was home to take her to the party and pick her up the next morning, it really didn’t make sense to make her go with me and Olivia when she just didn’t want to do so.
But without Alyssa, it was just me and Olivia.
Which is fine, right?
Except…what if we were in an accident and I was unconscious? What if strangers tried to talk to Olivia, who looks like your typical nine year old girl and she just sat there? What if she was needed to tell them who she was because I couldn’t do so?
So I made a sign for her. It sat on the seat beside her and said, “My name is Olivia Ordinary. I have 5p- Syndrome. I am non-verbal. I my mom can’t respond, please call my dad, Tom Ordinary at XXX-XXX-XXXX…”
It also listed my mom’s name and her landline and her cell.
And the more I thought about that sign, the more freaked I got. I mean…obviously, we didn’t even need this little piece of paper with names and phone numbers on it. But I worried. I worried so hard.
But my worry transferred itself to the route we were taking.
The last time we went to Purdue University was two years ago and I missed a turn and got all turned around and flustered.
And damn it, West Lafayette is so freaking confusing. Of course it is. It’s a college town, so there are a bazillion one-way streets. It’s a nightmare when you only go there one time a year. So yeah, I was stressed about the drive.
But I probably wouldn’t have been nearly as anxious about the whole thing if it hadn’t just been me and Olivia going. Just the two of us…
We did it, though, because she really wanted to go. She doesn’t talk much (at all?) to the college student who is assigned to be her ‘buddy’ but she did go draw on a big dry erase board while I ate the dinner provided for us. And she and Sarah danced as we waited to go in and be introduced with all the other Riley families.
And in the end it was fine. I made the right turn at the right place and didn’t have to backtrack during the drive. I made all the right turns onto all the one-way streets and made it to our hotel with no problem.
Sure, we had to go back into the hotel twice to finally get out of the parking garage but that was low stress too.
I’ll probably keep that sheet of paper with Olivia’s name and the phone numbers in my car just because, well, it’s a good idea. I mean, even if Lyss and/or Tom were with us, well, we could all be incapacitated and she’d still need to be able to communicate and handing a piece of paper to a stranger is way more likely to happen then her suddenly speaking to them.
It’s just one of the things we have to worry about because we have a mostly non-verbal child. Sure, she’s not non-verbal at home but get her around anyone who is not immediate family and she’s clams right up.
If she could help it, I’d get frustrated but I don’t think she can. I honestly think she WANTS to speak to others but she can’t force the words out. And so for now, we’ll pass notes as necessary. The written word is still a form of communication and I’m going to run with it for as long as she needs me to.
Fun was had by all and it was great.
But…the time leading up to the trip was fraught with anxiety on my part.
See, this was the first time O and I had done this kind of thing alone. Usually Alyssa goes with us. But this year, she wanted to stay home and attend the birthday/Halloween party of one of her friends.
I figured that at thirteen years old, she’s old enough to make that kind of call and since Tom was home to take her to the party and pick her up the next morning, it really didn’t make sense to make her go with me and Olivia when she just didn’t want to do so.
But without Alyssa, it was just me and Olivia.
Which is fine, right?
Except…what if we were in an accident and I was unconscious? What if strangers tried to talk to Olivia, who looks like your typical nine year old girl and she just sat there? What if she was needed to tell them who she was because I couldn’t do so?
So I made a sign for her. It sat on the seat beside her and said, “My name is Olivia Ordinary. I have 5p- Syndrome. I am non-verbal. I my mom can’t respond, please call my dad, Tom Ordinary at XXX-XXX-XXXX…”
It also listed my mom’s name and her landline and her cell.
And the more I thought about that sign, the more freaked I got. I mean…obviously, we didn’t even need this little piece of paper with names and phone numbers on it. But I worried. I worried so hard.
But my worry transferred itself to the route we were taking.
The last time we went to Purdue University was two years ago and I missed a turn and got all turned around and flustered.
And damn it, West Lafayette is so freaking confusing. Of course it is. It’s a college town, so there are a bazillion one-way streets. It’s a nightmare when you only go there one time a year. So yeah, I was stressed about the drive.
But I probably wouldn’t have been nearly as anxious about the whole thing if it hadn’t just been me and Olivia going. Just the two of us…
We did it, though, because she really wanted to go. She doesn’t talk much (at all?) to the college student who is assigned to be her ‘buddy’ but she did go draw on a big dry erase board while I ate the dinner provided for us. And she and Sarah danced as we waited to go in and be introduced with all the other Riley families.
And in the end it was fine. I made the right turn at the right place and didn’t have to backtrack during the drive. I made all the right turns onto all the one-way streets and made it to our hotel with no problem.
Sure, we had to go back into the hotel twice to finally get out of the parking garage but that was low stress too.
I’ll probably keep that sheet of paper with Olivia’s name and the phone numbers in my car just because, well, it’s a good idea. I mean, even if Lyss and/or Tom were with us, well, we could all be incapacitated and she’d still need to be able to communicate and handing a piece of paper to a stranger is way more likely to happen then her suddenly speaking to them.
It’s just one of the things we have to worry about because we have a mostly non-verbal child. Sure, she’s not non-verbal at home but get her around anyone who is not immediate family and she’s clams right up.
If she could help it, I’d get frustrated but I don’t think she can. I honestly think she WANTS to speak to others but she can’t force the words out. And so for now, we’ll pass notes as necessary. The written word is still a form of communication and I’m going to run with it for as long as she needs me to.
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