Hot Wheels for Rylie wrap-up

And now, the final chapter in the Hot Wheels for Rylie adventure (though, I am sure there will be a few epilogues along the way).

Over Labor Day weekend, we were able to rent a TerraTrike from the home base here in Grand Rapids. These trikes were not originally on my radar since they are all recumbents, but they have an incredible bike and their rental program made it possible for us to test. Nothing to lose. The TerraTrike is incredibly light-weight (40-50 pounds as opposed to the 60 and 70+ pound upright trikes we were looking at) and fully adjustable, so it would fit her for the rest of her life. It looks different and it’s low to the ground, but it’s incredibly easy to handle and very safe. Rylie was able to sit in it and immediately pedal, brake, and steer. It fit in the back of the minivan with half a backseat down, which was super convenient.

But it was too much. Cost-wise, it would take everything we’d made in the fundraiser… but, more than that– it was just too much for Rylie. It was too fast. Too light. Too different. She was overwhelmed.

Thank goodness for rentals.

Curt put in lots of phone calls and emails to the trike conversion options, but couldn’t get anyone to answer.  The conversion is simply a 2-wheel attachment that fixes onto the rear axle of a bike. We liked this idea because it would have kept the overall weight down (important when your rider is barely breaking 50 pounds), and she’d still have a 2-wheeler when she was ready to switch back. The bike would have to be a single-speed, hand-brake option… or fabricated to be such (which was possible- our local bike shops were so pumped to help us), but Ry’s in-between bike sizes (crazy long legs!) and that brought up a lot of questions. Questions you need to ask and be sure about before you lay down serious cash and plan for shipping. It’s hard to spend such big money on a specialty item without talking in-depth with an actual person, and ultimately, it wasn’t a risk we were willing to take.

Which left us with the good, old-fashioned, upright trike option. Ah,but… junior size? Foldable? Adult size and she can grow into it? Lawd.

In the end, I opted for a light-weight (50 pounds), adult-sized (24”) trike made by Sun Trike. Ry is right in the middle of the the scale for junior vs. adult frame and wheel size. Since she will do nothing but grow, I went bigger. And, that’s how we ended up with a mint green, 3-speed trike with a beautiful, white basket in our driveway a couple weeks ago. The bells and streamers are coming, but, y’all…

We did it.

And here’s the thing:

Ry loves it.

[Ry opening it.]

[Ry riding it.]

She talks about it and writes stories about it and draws pictures of it… and she sits on it and pedals it around our little circle driveway. But, for the moment… it’s still a little bit too much. I wanted fireworks and happy tears and riding until after dark. I wanted immediate life-changing freedom for a girl who’s been slowed down by her body all her life. And she’s 7 and she’s still a little overwhelmed. It’s still a little too much for her.

As I watched her roll (not ride) her new trike into the barn for the evening (again) and take her treasures out of the basket that it hit me:

The trike was a gift. 

Which means, it’s not mine.

It’s hers.

It’s not a gift if I check up on it.

It’s not a gift if I dictate how it’s used.

It’s not a give if I measure and chart enjoyment.

If not a gift if I don’t take my hands and my expectations off of it.

It may, in fact, take her longer than I expected to be comfortable pedaling on a public path towards the ice cream shoppe, but it’s hers and she loves it. She loves it exactly the way she’s supposed to. Allowed to. Blessed to.

So, I’m letting it go.

Good thing to remember in a few other areas of my life.

Do my research.

Make the call.

Give my time or talent.

And then walk away.

•

To all of you who cheer for Rylie every day and who graciously gave your money and advice on this project, THANK YOU. I cannot say it enough: THANK YOU. What a gift you are to me. An on-going, inspiring, 110% gift.

•

Hot Wheels: part 1

Hot Wheels: part 2

Rylie’s Go Fund Me page

Hot Wheels for Rylie

Well, last Monday pretty much knocked it out of the park, Folks. Donations continue to come in and we are overwhelmed.

We raised above and beyond what I requested… which brings up a million questions for this girl who can process the life out of anything. ANYTHING.

Things that have been said out-loud over the past week: Do we let Ry pick out anything she wants? Do we give her limited options so the choice is somewhat practical? Let her pick anything! Be responsible! What to do with the extra after all is said and done? Open a savings account for Ry’s future fun/special needs? Save it only for future bikes for Ry? Give part of it away? But folks gave to RYLIE, so maybe we shouldn’t give part of it away. Folks gave to Ry’s BIKE fund, so we should only use it to buy a BIKE for Ry- now or later. We can use this money for anything for RYLIE. We can use this money for ANYTHING. Let’s go to Chicago! Folks gave to our family and trust us to do the right and fun and good thing. They entrusted me with the money, so I’m responsible for the money… but they trust ME, too, so CRAP.

You laugh, but it’s all true. There’s a sweet, kind, crazy responsibility in receiving a gift of this magnitude. Of sharing an experience and guiding the ship.

Thank goodness I’m usually only responsible for deciding what’s for dinner.

Curt was excited that this project gave his Inner Spreadsheet Geek the chance to do some serious research. Lawd, y’all. The research. I was all set to click BUY, throwing confetti and ordering the rainbow bell option with extra streamers, and he’s all like, “well… have you seen blah blah blah?” I do love this man and he is remarkable. I love him the most of anyone, really. BUT HE IS SO DARN LOGICAL AND THOROUGH.

Actually, I think what I said last night after anther hour of extended web-searching was, “I think we’re making this too hard. You’re making this too hard. You’re looking at way too many websites. I have seven tabs open right now. This is nuts.” and he said, “I can look at as many websites as I want.” and I said, “She wants a basket- THAT’S ALL SHE WANTS.” and he said, “You’re right. Have you seen these baskets?” And then I died.

All this to say, we haven’t made a decision yet, but we will. By tonight. I say so.

We realized quickly that there are 2 major options:

1. Buy a trike. (But what size? She needs a 20″ wheel right now but is right on the edge of switching to a 24″. She could ride a 24″ wheel for longer… but do we buy for now or for later? Maybe she won’t NEED a trike later?)

2. Buy a bike AND a trike conversion kit. (This allows any bike to be transformed into a trike. More expensive, but you kind of get 2 for 1. This is a bit harder than it seems, though. Ry is right in-between bike sizes, as mentioned above. There are also basically zero 24″, single-speed bikes with a front brake. BUT, we could pay for modification and our local bike shops are super excited to help. Hmmm.)

Putting all that web-research to good use (and clearing my brain a little), I offer you this abbreviated list. For anyone out there looking for some bike/trike options for kiddos and adults, here are some great sites we’ve found:

adjustable bike rack that holds 1 tricycle or 2 bicycles = $370 

http://www.industrialbicycles.com/Allstarrack.htm

Utah Trikes (Sun Trike, 24” wheels) = $800

http://www.utahtrikes.com/PROD-11618204.html

TrikeZilla axle conversion kit = $400

http://trikezilla.com/Home_Page_QBVX.php

*need a single-speed bike with a front brake

Bicycle Designer trike conversion kit = $249

http://www.bicycledesigner.com/trike-parts/trike-conversion-kit-with-36-spoke-hubs.html

Worksman folding Port-O-Trike (20” wheels) = $500

http://industrialbicycles.com/portotrike.htm

(I’m leaning on this tree. It folds. It has 20″ wheels. It has a basket. They also have a 16″ trike option for Littles! Love it.)

Desoto Classic Trike (20”, 24”, 26” wheels) = $380

http://www.industrialbicycles.com/DesotoClassicTricycle.htm

Worksman trike-cycle Eagle (24″ wheels) = $469

http://www.worksmancycles.com/shopsite_sc/store/html/eag-cb.html

iCan Bike workshops

(teach special-needs kiddos how to ride bicycles independently)

http://icanshine.org

A major fact in our life is the “my sibling gets all this fun stuff and therapy and equipment and time and money and attention because she has some obvious special-needs” phenomena that is so common. Gus and Abby are young, but, trust me. They feel it. They know Ry gets to ride horses and they don’t. They know Ry sees different doctors than they do and plays in special rooms with SUPER FUN toys at school and is allowed snacks at random times. They don’t understand why, but they certainly see it.

I made an executive decision this weekend that the 36 donors would be perfectly fine with all three kids receiving new helmets of choice. Savvy? And, we’ve decided to take any extra left over post-bike/trike-selection and keep it for future fun, independent possibilities for Rylie-O. Now, we just have to pick the actual bike/trike.

ALL THIS simply in the interest of full-disclosure, honesty in relationships, and humor.

Mostly, I just want to say,

Thank you.

We’ll do you proud.

I am forever sorry.

I.

She was almost but not quite to the point of no emotional return. Her horse, Juliet, knew a lightweight when she felt one and took full advantage… stopping to graze whenever she wanted, veering off the beaten path. For 30 minutes, all 48 pounds of Rylie dug deep and pressed on. But then, it was too much. From 2 horses back, I could hear the anxiety in her voice as she commanded Juliet to, “WALK ON. NO GRASS.” I could hear the tears behind the effort, and I knew we were near the end.

Our leader, Jess, encouraged Ry to keep going. I kept Rylie talking about cows and Colorado, cousins and swimming for as long as I could. But after another 15 minutes of stopping and starting, Ry’s eyes had started to leak and her body was slumped in defeat.

Jess grabbed Juliet by the pony-lead and kept the line moving, instructing Ry to hold on to the saddle horn and keep her eyes forward. She wasn’t upset in the least, but I found myself biting my tongue.

I wanted to yell, “I’m sorry!”

“I’m sorry. Some things are really hard for Ry. It’s amazing that she’s doing this! It’s such a huge big amazing thing!”

I wasn’t worried about Rylie. I knew we’d bring her around, that she’d muscle through… I knew she’d do this. But I desperately wanted to explain to our leader and the other two guests.

To the grocery check-out clerk.

To the lifeguard at the pool.

To the other moms on the play ground.

I’m sorry.

I’m sorry she’s standing so close. She’s trying to memorize you.

I’m sorry we’re interrupting your lunch.

I’m sorry we’re making your job harder.

I’m sorry.

But the trail didn’t give me the chance that day to lay out the full scene that day. It did give me plenty of time to think, though.

Sometimes ‘I’m sorry’ is really, really important.

And, other times, it cuts life short. ‘I’m sorry’ robs people of their chance to be amazing, to do their job, to show grace, to walk with me.

I think I would rather be thankful than sorry. If we can make it through to the end of the melt down, the ceremony, the trail ride, the dinner… what I’d like to say is, “Thank you.”

Thank you for handling an awkward situation with grace.

Thank you for loving on my family and my child.

Thank you for doing your job well, whether easy or difficult.

Thank you for stepping up to the plate.

Thank you for lending a hand back there.

Thank you for being a great example.

It’s not my job to apologize for every instance of awkward or hard or annoying. Not every time. That’s just life, and we’ve come to expect too little of others… and of ourselves.

But I will, I absolutely will, go out of my way to encourage decency and beauty and simple effort. Because we’ve gotten a little low on that end, too, amen? So, call it when you see it. ‘Thank you’ doesn’t have to be anything but sincere. No flowers or extra tips or hand-lettered gift tags. The simplest effort with the greatest impact is your voice, your brave and shaky voice, stopping for two seconds, making eye-contact, and saying, “thank you,” out loud.

I’m on it.

P.S. Rylie? That girl finished a 2-hour trail ride on her own horse in the mountains of Colorado. We did not have to turn around. We did not have to get off the trail. We just had to make a few adjustments. It was a beautiful, beautiful thing.

II.

For years and years, kind friends and family and even strangers have asked if there’s any kind of donation collection for Miss Rylie Joy. The answer has always been no. We use state-provided therapy for speech and occupational/physical and what the state doesn’t cover, we pay out-of-pocket. Out of pocket expenses have been specialist evaluations, equine therapy, music therapy, and other doctors that insurance just hasn’t come on board with as of this century. Rylie walks unassisted and was blessed with an iPad for school-use… so there aren’t really any big, huge, amazing things that we’d love to have to make life easier.

BUT.

There is one thing that would make life super fun: a bike. And, not just any bike… a cool tricycle with a basket and brakes that are easy to use. A tricycle that doesn’t scream ADAPTIVE EQUIPMENT! CHILD WITH IMPAIRED MOTOR DEVELOPMENT ON BOARD! A tricycle that would allow Rylie Joy to ride with her friends and be the super-cool seven-year-old that she is… .while giving her a little more time to work on the balance aspect of two wheels. A tricycle would let her body practice the braking and starting and stopping without mastering balance at the same time (a perfect storm of overwhelmed-ness for most kids… Ry especially).

I want to buy Rylie a bike.

And I want to know if you’ll help me?

They aren’t cheap. And then you have to ship them. And then you need a helmet and OF COURSE a bell and streamers. But beyond the price of the thing… there’s the magic of simply coming together as a community of friends and pitching in $10 or $20 or $300 or $2.50 and making a sum larger than the parts… of doing it together because we can. You have cheered this girl on since before she took her first steps. What a joy it would be to give her a brand-new, shiny, YOU CAN ACTUALLY RIDE THIS bike- not on her birthday, not on Christmas, but on a random, ordinary, perfect day.

It’s a risk, I know. It’s not absolutely necessary and it’s not saving the world. It’s just something beautiful and fun and helpful for our girl. Honestly, that’s not something I want to do alone. It’s kind of too big for me… and I’m not talking about price. I’m talking about holding happiness. It’s meant to spill over and be shared.

So, do it with me.

If you’re in, head here:

Or share this link: http://www.gofundme.com/hotwheelsforrylie

I’m not sorry for asking.

I am so incredibly excited to say THANK YOU. Thank you for loving on my girl in this remarkable, tangible, memory-making way.