Category Archives: Rylie Joy

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.

world

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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. 


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.


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.

leaf

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).

terratrikeOver 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.

suntrike

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.

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