Tag Archives: rylie

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.

I see you.

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.

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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.

2nd

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

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

 

 


I am forever sorry.

I.
trail ride

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.

summer 2014

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

PikesPeak

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.


when love is tarnished and bent

In November of 2010, Rylie was 3, almost 4. We were 2 years into speech therapy and had made it to the top of the waiting list at a local therapy riding center where people of all ages and with all capabilities ride horses retired from the daily grind. The horses are as varied as the riders: cart-pullers, rodeo stars, Disney parades, and 4H stars.

It was the first time in my 2 years as a Therapy Mom that I saw Rylie doing something I wished I could do. There was this tiny, 25-pounder… in a purple helmet and pink boots… riding around a ring like a natural. She was paired with Bubba, a quarter-horse donated by a volunteer who used to ride barrels in the rodeo. Bubba wore purple “socks,” or ankle wraps, to help with his arthritis.

With Rylie, Bubba was a king. 

The time came sooner rather than later that Bubba had to retire for good. The daily walking of lessons added to the stress of barrel racing in his younger years had finally added up to pasture time. We said goodbye at his last lesson and talked excitedly about Ry’s new partner, Barney. Surely lots of riders were sad to say goodbye to Bubba, but this was Ry’s first horse, and he would always be special. We spent lots of time talking through the transition and how Barney and Bubba were great friends.

A couple of weeks later, one of the volunteers met us in the barn and asked if we’d stay after for a minute. Lindsey is not so tall and always in jeans. Bubba? Bubba was her horse, and she reassured us he was happy at home but that he missed his kids.

“Hey,” she said, bending down to talk to Rylie, “he asked me to give this to you. I think he misses you and he wants to say hello.”

With that, she handed over a tarnished and bruised metal trophy buckle with a girl in the middle… a girl on her horse.

buckle

“Bubba?” Rylie asked.

“Yep. That’s Bubba. That was his first rodeo buckle. We won it together. I think he wants you to have it. You looked great out there tonight, Rylie.” And with that, she turned around and went back to tacking the horses for lessons.

No doubt, Rylie is too young to grasp the significance of that gift. For now, it sits high on a shelf in her room, next to her special horse figurines and miniature cowgirl boots. How many days have we talked about Bubba in our life? Every day since meeting him. But the buckle is more about Lindsey recognizing the love another girl has for her horse, and giving her a piece of him. Rylie doesn’t realize it yet, but what she got was more than a piece of metal.

Someday, I will tell her the story again. About how sometimes love is bright and beautiful and obvious. And about how, other times, love is well-worn and uneven. Sometimes love is bold and front and center, but more often it is quiet and steady, hidden beneath the effort and layers of life.

Love multiplies when shared.

And it comes in absolutely every shape, size, and shade.

Thank you, Equest Center, for loving your clients so well, for recognizing the amazing relationship between horse and rider, and for giving them both a chance to run.


Rylie Joy is seven.

AVbook

Wednesday night, I asked Curt to write down a number between 1 and 17… and he picked 3, which is Corrie! Yay, Corrie! I’ll get this in the mail to you. Probably with the Christmas cards 🙂

Thanks for commenting Monday, Folks. It was fun to hear from you.

Rylie Joy!

I need to tell you a story, Child. A story for you to keep close at heart.

Can we talk a little about Esther? Esther was a queen. She was also a Jew, but that was a secret. Her uncle asked her to keep quiet, and she did. But then one of the King’s men realized her family’s secret and wanted to punish ALL the Jews by killing them. It wasn’t safe anymore, and Esther had to decide whether or not she was going to be brave and confess to her husband that these people… these people who were going to be killed… these people were actually HER people, too.

It was a great risk. A matter of life and death.

As she thought about what she was supposed to do, her uncle reminded her: “who knows whether you have come to the kingdom for such a time as this?” (chapter 4, verse 14)

Esther was a queen behind the gates. She had a secret, a burden, that would either kill her and her family or save everyone. Was she brave enough to risk it and confess or would she stay silent and watch her family disappear? Was she willing to use her position to help those on the other side? Was that maybe exactly why she became queen in the first place?

As a woman, you will hear this story over and over in your life. Esther is a champion not only among woman but all mankind. She is an incredible example of God’s timing and provision… and, what’s more, His desire for us to be courageous in Him and for Him.

You, child? You are my Esther.

You don’t realize it, but you have the potential to set people free. Free from expectation and standard. You were born with the ability to disarm and communicate. Oh, child. What many wouldn’t give… many with a voice that works perfectly fine… to be able to connect like you do.

I would never expect a disability to come with so much power, but I see it every day. You, behind your gates, are helping us on the other side see a better way to live.

You know, Esther did tell her husband, the king, that she was a Jew. She took a big breath and she did it. And the king changed his mind. She used her position as queen to save those who had no say in the matter.

My prayer for you, Ry, is that you would continue to fight hard. That you would be brave. That you would know we are all learning from you, a child who struggles to speak.  So many have learned so much from such a little child.

It has been this way throughout history.

sparkleRy

Here’s to you, Rylie Joy.

The girl who loves horses and purple and gym class. The kid who hoards notebooks and pencils and homework busy sheets. The child who eats like a linebacker but can’t break 45 pounds. Here’s to you. The kid who can work any gate on the farm, wash 2 dozen eggs, and pet 500# cattle without blinking. Here’s to you.

You are seven today, and you are fierce. You love unconditionally, you dance without shame, and you cry until you are empty. Stand in line and take your place among the chosen. Teach us to laugh and be brave and love desperately again.

You, Little, are a healer. You are a clown. You are a feeler, and you are a fighter. But above all these, you are the daughter of a good King. Never be afraid to approach Him. Never doubt the gifts He has given you. And never, never hold back… because you, with Him, move mountains every day. You have, indeed, been chosen for such a time as this.

I love you.

Mom

Past birthdays:  Ry is bornRy is 1Ry is 2Ry is 3Ry is 4Ry is 5. Ry is 6.

My favorite Rylie story: the story about the fish.

What’s your favorite Rylie story? 

[family photo above by the incomparable Trace Dicocco]