Tag Archives: apraxia

Ry is 8.

Ry's native language

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.

tarweed

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.

LUKE

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.

Julie and Ry

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. 

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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.


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.


as long as she’s healthy

R&K

 

AS LONG AS SHE’S HEALTHY.

That’s all we want. It is the mantra of every parent-to-be. We don’t care whether it’s boy or girl, we just want him or her to be healthy.

Our entire vocabulary shifted when Rylie Joy turned 20-months. She was healthy, yes, but she was not typical. She was functional, yes, but she was not thriving. She was perfectly fine, but she wasn’t. Was she healthy?

My first concerns were school and independence and long-term capacity for speech and learning. Seven years into this journey, I find that my prayers have changed. I can do therapy drills and we can alter medications. We can drive to appointments and we can monitor food intake. There is actually so much that can be done to assist the health of our children.

What I cannot do is make another child love my child, and it is the ache of my heart for her to be safe outside the farm gates. Somewhere after the grief of diagnosis and the passion of therapy to increase quality of life, my priorities changed from wanting better test results to knowing her heart was safe.

As long as she is loved.

Please let her be known and be loved.

[This is not the end! I’m so blessed to be a guest over at Making Us Whole today. Please click over to read the rest of the story.]


test

Never test another man by your own weakness. – Joseph Conrad

test

Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. [James chapter 1, verses 2 through 4]

 

 

My usual stories with words will be replaced by daily stories with photos for the days of Lent. You see, I’m trying to look for Lent this year instead of waiting for it to find me.

 

:: resources and readings ::

 

Jesus Calling Lenten companion by Sarah Young

 

Instagram Photo-a-Day Journey by Catholic Sistas

 

Beneath the Tree of Life Lenten devotional by Michelle DeRusha

 

Holy Lens Lent-stagram project by Survive Our Blessings

 

daily lectionary readings

 

Lent and Easter devotions from Bible Gateway

 

family Lent devotional from Ann Voskamp

 


pretty mystery

[lyrics by Eric Taylor, sung by Lyle Lovett]

Rylie Joy,

We hear so little about the simple things in your day… whether your shoes fit well or you like your lunch, whether a friend hurt your feelings or your teacher made a funny joke. The big things we know because we ask and we follow up… but the small things are secrets locked inside of you. You use all of your words to explain the big things in life. These smaller details are secrets trapped inside you, tangled in sentences that are just too much to wade through at the end of a day.

I wonder, then, if you can understand the joy it was to read an email from your librarian late Thursday night giving me a glimpse into your world away from home:

I witnessed a precious moment today in library. Rylie usually sits in the front by me as I read to their class. Today, I started library by randomly picking one of their self-published books to read to the class. I told them we would read one of their books each time they come to library before reading the library book. They were excited and wanted to read more. The kids struggled to focus on the Olympic non-fiction text so I hid their books behind my book stand. Suddenly I noticed Rylie slowly moving behind me to their hidden, self-published books. Rylie quickly sifted through the class books and put hers on top. I asked her to join us on the rug and promised we would read more another day.

As she moved to her seat she spotted A, sitting in the back-arms crossed, face frozen in a serious pout (She was mad at a friend). Rylie moved to a spot next to A. With a look I can only describe as maternal, she cracked her neck, leaned in and looked into eyes. A ignored her. Rylie wrapped her arm around her shoulder and looked again into A’s face (deeply concerned). A melted. Her arms uncrossed, her pout disappeared and she began listening to the story. Rylie checked her face again, noticed the change and moved her arms back to her side.

Typically, Rylie moves a bit in library- sometimes to get a better look, or to point to a picture and some days just because she wants to move. Today was different. Rylie planted herself by A the rest of the time, providing the best sort of comfort- friendship. Truly the highlight of my day!

And of mine, Love.

What a pretty mystery you’ve suddenly turned out to be, Rylie Joy.

Ry 7

Your lack of words has heightened your emotions in all directions. You soar and plummet while I try (and fail) to hold the ground steady around you. You push and I pull. You crash and I burn. I wonder what you will remember from these years… these incredible formidable years when your heart is changing and growing and finding its own rhythm. Truly, there are many moments when I think you will save this world from the status quo… and still others where you could raze a house with your door slamming. I wonder what you must think, Child, as my demons fight alongside yours. Some days we are a symphony and others we are a train wreck.

But then. The fever breaks and you speak through laughter or forgiveness or- now- writing… and I hear this:

IMG_1964

You and I. 

We are capable of so much more than it seems in our darkest moments.

And we are so much more than the sum of our awkward and difficult parts.

Thanks for the reminder, Love.

Big wins for both of us this past week.

I’m always on your team.

Mom 

God, being rich in mercy,

because of the great love with which he loved us,

even when we were dead in our trespasses,

made us alive together with Christ.

 Ephesians 2:4