what she said

She was not surprised to find me crying. After 9 years in this house, Rylie Joy knows her mamma cries at commercials and when she’s mad, when she’s hurt and when she’s laughing too hard to breathe. Basically, every day. I cry for world justice and shelter animals every day.

But this was a sad and silent cry- I had just learned that Ry’s friend had lost her dad over spring break. I was overcome with grief for the family’s loss, with anxiety for the sweet children at home, with thanksgiving for the teachers who showed up on a terrible day to stand with their student. For 800 reasons, the tears came.

And so, I explained to Rylie that I was sad for her friend. I asked her if she wanted to talk about it, but she shook her head.

She left to find her shoes but stopped with her hand on the doorknob…

And in her broken prose she said,

HARD. 

And I said, “What, honey? Hard to know your friend is hurting?”

Mom, she said.

Hard to 

KNOW

what 

to do.

And then she left.

If there had been any hope of me collecting myself before that conversation, it was gone now.

My God, my God,

Yes.

It is hard to know what to do.

And I still do not have the answers.

I do know this: she must see me grieve. My children must see me cry and question and fight and cheer and worship in every kind of circumstance. I do not want them to be afraid of being unsure, of being sad, of being small in such a big, broken world.

One day they will come up against that shadowy world without me, and I do not want them to be surprised. I want them learn and practice and know that there is life on the other side. I want them to understand that THIS, this hard-to-know place, THIS is where it gets real. Only in this place can they see the necessity of the Gospel.

If we could right every wrong, if we could heal every wound, if we could explain every mystery… we would have no use for Christ. But we cannot.

There are actually things we cannot fix, and it is a terrible realization.

I will not accept an education from the news or video games or fairytales. No, they will learn about heartbreak and salvation from me. They will learn that the process is messy and inconsistent and wild and dumb. But they will see a real person live a real life, and they will know it is possible to trust God even when we have no idea what he is doing.

Let them apprentice grief by walking through it with me, in the safety of a transparent village.

Let them meet an unexplainable, unforgivable wrong…

Let them stand in the fury of a heart they have willfully hurt…

and let the process be familiar because they saw me do it, too.

And it was hard and beautiful and too, too long.

But it was possible.

Ry is 8.

There are few ways to deal with fire, Child. You can douse it with water, but this may leave the area both flooded and burned. You can smother the flames, which is quick but you risk serious injury and are still left with damaged goods.  Sometimes, sometimes… the safest way to deal with a fire is to let the flames burn out on their own. It is beautiful and horrifying, but it purifies. And, it is the only way some flowers will ever see the sun.

These are the FIRE EPHEMERALS, or fire followers. They emerge only after devastation. Their seeds only open in extreme, intense heat… and they will wait 40 years if they have to. Some will not even attempt life if it’s been less than 10 years since the last flame. What kind of beauty is this? That which demands such a display, such destruction, before showing its face?

I am only just beginning to understand.

It is the rare, the quiet, the high on the hill, the least sought after, the unique, and off the beaten path, the beauty from ashes kind of life.

I am only just beginning to know a God who would hide treasure among dust, who asks for obedience rather than results, who craves a relationship more than a receipt. He, himself, is a consuming fire, and there is no way through it but through it. 

This God did not give me a child the world wants to ‘fix’ in order that I might lead her and myself to a better life.

He gave me a child that I might love as He loves me.

There is no end to this journey, I find. Each time I reach a crossroad, a bench, a peak, a valley… each time, the road continues on into the sun and there is nothing to do but keep walking.

I have never been so broken or so full at the same time.

There is no end, but I am not doing it wrong. 

I am only just beginning to understand.

You, my girl… you are eight.

You can say HAPPY BIRTHDAY this year. HAPPY BIRTHDAY, I AM EIGHT. It is a miracle and a testimony to your relentless spirit of indifference. I am convinced you still do not know nor care that your voice comes out differently than most of those around you. I (still) have more questions than answers at this point… and so I expect God desires this conversation to continue.

Ry, you are 51 inches tall. You weigh 50 pounds. You want your hair to be long… long, like Ms. Julie’s. You wear a medium/8 and a 3 in shoes. A THREE. Gas costs $2.75 and bread is $2 a loaf. Gideon is 4 and Abby is closing in on 3. Dad is 36 and I (mom) am a month away from 38.

You love to ride horses. You love to write: lists, letters, words- WORDS! You can read! You can do simple math. I am convinced that wonders will, truly, never cease. You’re in second grade with Mrs Burgess, and you love to ride the bus. Your best friend is Kaitlin, and she is one of many in your sweet circle of friends (and adults) that love you and pray for you and watch over you and look forward to you. I am so grateful for the beauty God has grown in the dessert of special-needs. What a community of kind and honest people we share life with, Rylie! Fire followers, all of them. And more vibrant because of it.

You do not ride a two-wheeler or tie your shoelaces, and we do not care. Your temper is fierce. You need a plan, you like to see the next thing, and you thrive when you have a task, a job, a purpose.  You want pizza every day. You can name all of our cows by sight, and you pack your own lunch. We are so incredibly proud of you, Ry. For how hard you work, for how honest you are, for how quickly you forgive.

You are a new creation. A beautiful, new, growing, ever-changing creation. A fire-follower.

You remind me every day that fires are not the end… they are the beginning.

I thank God for the beauty that is you, Girl.

Love you so much,

Mom

•

Past birthdays:

Ry is born. 

Ry is 1.

Ry is 2. 

Ry is 3. 

Ry is 4. 

Ry is 5. 

Ry is 6.

Ry is 7. 

This is

This is the day I woke up to mist. It is the day Ry remembered to brush her teeth. It is the day Gideon refused to wear long pants. It is the day I forgot to print out photos for the Star Student to share with his class. It is the day Abby wanted Swedish fish for breakfast.

This is the day Abby and I witnessed the immediate aftermath of a semi-vs-car fatality. This is the day I thanked God I was running late.

This is the day I met with new friends to discuss a women’s December luncheon and a message I would share to encourage hearts during the holidays. This is the day Abby would cry because I ate a bite of her banana. It is the day I spoke proudly of my husband and the honest, hard work he does every day.

This is the day Abby and I sat in the back seat of the van and watched a movie. It is the day I forgot my bag of goodwill items for the 81st time. It is the day my phone battery was gone by noon.

This is the day we added the words ‘cognitive impairment’ to Rylie’s file. It is the day her village met around a table to re-commit to serving her and teaching her and building her up. It is the day I cried, silently, for two and a half hours while sifting through beauty and ashes.

This is the day my neighbor watched my kids for hours longer than expected. It is the day I made Chinese food. It is the day my kids played without fighting. It is the day we didn’t push bedtime.

It is the day, it is the day.

It is always the day the Lord has made.

I will rejoice and be glad in it.

I will rejoice because today was scary and beautiful.

I will rejoice because I do not, nor have I ever, walked alone.

I will rejoice because I have breath to say,

This is the day that the Lord has made.

tiny kingdoms

What do you think your gifts are? Your spiritual gifts? she asked with a broad smile. How are you specially equipped to further the Kingdom? Fill out these forms and we’ll help you find your place, your comfort zone.

I look at her and wonder if my skills can even be measured. If there is a chart for my particular brand of talents.

Every day I am out of my comfort zone.

My place is here.

I am building tiny kingdoms.

Dressing little bodies.

Monitoring little bodies dressing themselves.

Protecting little bodies who undress themselves.

I am the chief Completor of Forms. The holder of medical records. The one with the key to the birth certificates.

I am the builder of bridges, ramps, garages, and rockets. I make houses and barns and tents. I divide supplies equally over tyrannical consumers, and I supervise the demolition of a day’s hard work.

I dress American Girl dolls with speed and efficiency.

I am the monitor of snacks and the keeper of sugar. I pour the milk that is too full for little hands. I open the Ft. Knox wrappers of granola bars and cheese sticks and juice box straws.

I remember where I last saw the beloved bear or baby. I know all the secret hiding places for the one missing shoe. Why is it always the same one?

I am the only one who can be trusted to buckle and unbuckle bicycle helmets.

My kiss magically heals wounds and quiets tears.

I am a master of fitting thumbs into mittens, tiny toes into boots, and hats on frantically moving heads.

I know who wants honey on a bagel, nutella on a sandwich, and jelly-no-peanut-butter on half a slice folded over. I know these things.

These… THESE are my spiritual gifts.

My gifts don’t transfer especially well to the Real World, but they hold my little people- my tiny kingdoms- together.

Is it not spiritual to be able to decipher a cry for help from a scream for joy? Am I not equipped for battle with grace and laughter and discipline… and more than a few tears along the way?

I am not always a grateful bearer of Truth, a kind giver of gifts, a silent hand of encouragement. I am usually looking for instead of handing out. I am simply not ready to be more things to people beyond my own gates. The tiny kingdoms are still stretching my time and my talents.

Someday, I will graduate or expand to sharpening the more traditional spiritual gifts, and I will be useful in different ways. But for now,

Every day, I am out of my comfort zone.

And yet, my place is here.

Building tiny kingdoms.

•

And to you, too crazy to make a meal from scratch right now, too overwhelmed to take a walk at night, too behind on laundry to fold AND put away… too tired to write blogs, too unscheduled to bring a meal to an acquaintance, too walking-a-fine-line to reach out- to you: You are not alone. Do the next thing. Just, the very next thing. That’s all you have to do. Eventually, you will be given more. More time, more sleep, more capacity. But for now, just do the next thing in your tiny kingdom. It is enough.

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

2nd grade (part 2)

I have always been a letter-writer.  It’s how I process. While I realize this letter is directed at a specific person in our lives, I think it’s important for me to say things publicly… both easy and hard. It is an act of accountability on my part, not an attempt to teach parenting or relationship etiquette or special-needs love. For me, it’s just talking, out loud. Parenting, out loud. Living, out loud. Without writing, out loud, I tend to hide.

Dear teacher,

Welcome to Team Rylie! I know you have 20 other hearts to teach and love and guide this year, but there is one that is most special to me. I thought some extra insight in Ry’s life might help you understand the importance of what you do every day for our family.

You are my eyes, my ears, hands, feet, and heart at school. Don’t ever hesitate to tell me anything. Every tiny piece of information you give me helps color in a blank picture of life for Rylie outside this farm. Keep some secrets for yourself… some private jokes between you and my girl. I won’t be jealous of that bond. I want Ry to meet and know women who are trustworthy, funny, smart, and kind. I have tried for almost 8 years to open the gates to her village. Just know that anything you share is gold to me.

While I’m writing this, Rylie is in her room. She’s crying. This is actually really normal for us… which doesn’t make it awesome… just normal. She’s not mad. She’s just exhausted. All fifty pounds of her has given everything it has to walk, talk, and learn in the last eight hours in 2nd grade, and there’s simply nothing left.

I don’t want you to feel bad about that. I just want you to see- to hear, because she can’t physically tell you- that she’s giving you everything she’s got. All her laughs, all her balance, all her energy. She’s using it. She’s not holding anything back. She’s not saving it for later. School is the highlight and majority of her life right now, and I want all of her best THERE.

It will get better at home. As the schedule sets in, as the routine surfaces, as the dust literally settles, her little body will get stronger.

Let me give you some hints for our Rylie Girl.

(and let me remind myself)

She loves a job. Give her a job any job, and she’s money. She’s serving, she’s productive, she’s busy, and she’s happy. She thrives on being needed, being helpful. You want to re-focus her? Give her a job. You want to motivate her? Give her a job. You want to calm her down? Give her a job.

She gets hungry. Her body is burning calories just staying upright. Like, ACTUALLY staying upright. Her vestibular system is in overdrive 24-hours a day. Balancing emotions, academics, and friendships is all extra. She may need an extra Clif bar or banana here and there (and there and there) to keep her body working for her instead of against her.

The girl is always telling a story. In the absence of words, she uses her body to show love, joy, frustration, excitement, boredom, hunger, and humor AND she does it within 2 inches of the person next to her. This makes her hands sometimes deadly but always telling. I know (OH MY WORD I KNOW) this can be a difficult thing to navigate, especially when you have other hearts to consider. I know. Remind yourself and others (and me, please) that she’s doing the best she can with what she has at the moment. When she’s shown more, she’ll learn more. When she learns more, she’ll give more.

She dresses herself. I take no credit or blame.

Rylie loves to write. Take notes. Make lists. Copy signs. She saves paper, scraps, paper scraps, and anything that might be able to be paper or a scrap later in life. Writing and paper and pencils are freedom for her.

Sometimes, in spite of 12 hours of sleep, a full breakfast, and everything else right in the world… it will just be a bad day. Fierce hugs, a new pencil, and a lot of grace are the ticket here. Also, maybe a dance party. That girl can dance.

She will learn math and reading, Bible and science in your class. She will also learn how to ask questions, to say ‘I’ instead of ‘me,’ and to let others go first. She will practice manners and grace, music and conflict resolution. She will navigate being the favorite and being left out. Ultimately, these life skills and experiences are more valuable to me than any test score or IEP goal. Teach her to love and be loved. The rest is bonus.

I know that it will be both a joy and a challenge to teach Rylie this year. You will say that’s true of every student, but I know. She trusts you. She believes you. She covets your wardrobe.

And so do I.

All of it.

I am so glad we’re on the same team. You are a FORCE, and you were made for this.

Thank you for what you do.

Love,

Rylie’s mom

2nd grade

Child,

You are 7 and on your way to the first day of 2nd grade. You are 50 pounds and 50 inches of effort. You picked out your own clothes, brushed your own teeth, and packed your own bag before I rolled out of bed. You expect nothing but good things.

This years brings some pretty big changes. Your one helper in class will now be three. Math is in the afternoon, which means we need to keep you awake and motivated longer. Math, in general, is a cruel joke to both you and me. We will work through it together. Some familiar faces will be missing in the hallways, but the structure you crave is still there. The support you rely on is still there. The heart we give thanks for is still there.

Today is only good. 

Remember our rules: keep your hands to yourself, keep your clothes on, be a good friend, wear your shoes at recess, and ask for help when you need it. Give people space to breathe. Check your work twice. Sit with friends who are sad. Clap with friends who are happy. Say thank you as often as possible. And remember that I will always, always come and get you at the end of the day.

Have a great day, Love.

See you soon,

Mom

 

 

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.

progress

Five years ago, I watched Rylie sit on the steps of the gym pool. I silently begged her to get in, to splash around, to jump in with improper form and her hand holding her nose. But, she only wanted to sit. After a few minutes, the echo of the room was too much and we left, but not before her hands were clamped tightly over her ears and her body was a wet noodle of distress.

Four years ago, I took Rylie to a junior high basketball game. We had just made it to the opposite side of the gym when the buzzer went off signaling a time-out and Ry turned ghost-white. We cheered from outside the double-doors, but not before 2 more buzzers and me carrying a terrified, sobbing child back through the crowd.

Three years ago, I took Rylie to the zoo. We saw as much as we could and then stopped for snacks and a potty break. Three years ago, those crazy Dyson hand dryers were a new and fabulous invention… but no one expected the jet-engine flow of air to be triggered every time someone opened the bathroom door to stand in line. Parents and children, typical and special needs, terrified and annoyed… we all left. Immediately.

Some of this sensory and speech life is so predictable. You prepare for it, you bring extra snacks, you board last, you use key words, and sometimes your day resembles typical. But there are always the surprises you can’t account for. The perfect storm of tired, hungry, and scared that elevates a tantrum into a breakdown. The highway of emotions that has no exit. The effect that has no cause. The constant battle for solid ground. You find yourself afraid of grocery stores and potential traffic jams, circuses and cracks in the sidewalk outside your door. What will break today? 

Last week, I watched Rylie splashing in water up to her shoulders. The pool was sloped and she lost her footing. As a friend and I sprinted to the edge ready to jump in, we watched as Rylie took a deep breath and started kicking furiously. She made it to the side without our help and without panicking. Once on dry land, she cried… because it was scary. But she cried for 5 minutes. We didn’t have to leave. We didn’t have to sit in a dark room. We just had to take a break and redefine the boundaries. Rylie went right back in.

Today, Rylie rode with us up a mountain for an hour and then back down again. The return trip was full of thunder and lightening and a road without a guard rail. Instead of hiding on the floor of our van and shaking with anxiety, she searched for light in the sky and scanned the hills for sheep. Her hands were still over her ears, but there were no tears, no wailing, no panic.

Tomorrow, I will take Rylie back to that same zoo and, no doubt, we will have to stop for a potty break.

I’m not afraid.

She’s not growing out of her challenges.

She’s growing into herself.

She still breaks down every day. She still choose physical over emotional strength. She still, at age 7, speaks at a 2-year old level. She still hates hand dryers and random buzzers. But she knows her limits a lot better now, and so do I. So much is still unknown,

but I am not afraid and she is not going to break.

And that is progress.