Tag Archives: apraxia

circle of friends

Thursday night, I stood before 180 friends, family, and complete strangers and told Rylie’s story at the GRCS Circle of Friends dessert reception. Circle of Friends raises money for the Educational Support Services fund, which supplies staff and resources for all our special-needs kiddos in the Grand Rapids Christian Schools family.

circle of friends

It was my first speech in 15 years. I wore my fun dress and my fancy boots. It was an incredible opportunity to thank people who have changed our family for the better in the midst of great uncertainty, and it was a time to thank God for revealing Himself through my child. Certainly one of the better nights of my life, where everything seemed to work and, hopefully, for His glory.

What follows is the video and a full transcript of my speech that night; while I hate to see or hear myself on camera, I do believe it is worth it to celebrate the people that have surrounded us on this journey. 

I hope, whatever your situation, that you hear my heart in the words below:

the body of Christ is incomplete without you.

• • • • •

Thank you so much for having us. Curt and I so appreciate any opportunity to have conversation with adults. Having conversation with people know what it is to love and live with a child with special-needs is especially sweet.  Curt asked if I was going to talk about him in this speech and I said, “I’m sure.” And he said, “Well, are you going to talk about my big muscles?” And I said, “Well, NOW I am.”

 

Our family has a lot of special needs.

 

Curt, I know you’re nervous. Neither one of us is ever sure what’s going to come out of my mouth, but I promise you that I went over most of this and I think we’re good.

 

Before I start I just want to say that Carolyn asked for me to simply tell our story… and I’m happy to do that. I just need to clarify that while Curt and I are in this together, this is MY version of the story. My emotions, my memory, my processing. And it should in no way seem to reflect the extremely logical, spiritually balanced, and emotionally stable opinions of my husband. He is infinitely better with details and an absolute master of his emotions.  I am neither.

 

We are so very different… but we do make incredible children.

 

The youngest is Abby- she’s 16 months. She’s been teething for about 12 of those months and she grew her molars first. That kid can hold her own.  She has to.

 

Her older brother is Gideon. He is three. He is fast. And, he is usually naked. And, that’s really all I can say about him in public. I would love to trade stories with some of you when we are finished here. Maybe you can tell me what I’m doing wrong.

 

Our oldest is Rylie Joy. Rylie is 6 and a kindergartener at Rockford Christian.  Rylie was born ten days late, and- other than us having to go in and physically take her out- my pregnancy and her infancy was lovely and perfect and unremarkable in the best way. She slept, she smiled, she sat, she crawled… and all at the right times.

 

She was not walking on her own at her 18-month check up, though, and so our doctor thought we should have things checked out… just to be safe. Two months later, Early On of Michigan came to our house and tested Ry’s gross motor, fine motor, and speech abilities. All three major areas.  And, at 20-months, she failed every test.

 

And we were shocked, really, because she was FINE. She looked FINE.  I didn’t understand how things could be so wrong so early.

 

We plugged in immediately to special services through Ionia Schools. In fact, 2 of those therapists are here tonight because- as often happens when you spend hours upon weeks upon years working with someone- they become family. Rylie’s progress to-date is in no small part a reality because people like Dana and Becky taught our family how to be a family with a child with special-needs.  Your work is holy, and it is largely under-appreciated. Thank you and we love you.

 

Rylie has apraxia, which we’re all familiar with because it’s what adults have after a stroke. They have to re-learn daily skills and speech. But in children, there is often no known cause- no stroke, no trauma- and they don’t have the benefit of RE-learning skills. Their bodies have no muscle memory of performing these functions before, and so our children are literally and physically learning to hold a fork. Learning to sit without falling over.  Learning to make an ‘s’ sound. Rylie is still learning to talk. She has never had any trouble getting a point across though. She is a storyteller and emotional communicator… like her mother. But words and language are easy for me. It’s what I do. My daughter has the same desire for communication, but she must fight to physically be heard.

 

It has been said that the pure joy that will come from a rescue and a ransom of a child’s life is probably the most satisfying thing you can imagine (Mike Dennehy). Which is beautiful and lovely and true and hard and possible… particularly if you are God and your son is Christ and your goal is to save the world. It is an entirely different story when we are talking about our own children… when you are talking about my child.

 

I think we parents of special-needs kids… we know what it is to ransom our children. Surely every child is the Lord’s, but we face that Truth a bit quicker than most parents.  And it became clear to me the moment I found myself in a room with 12 other people, each assigned to a different part of Rylie’s education and well-being… doctors and therapists and coordinators and liaisons and aides and principals and teachers… I realized that I could not be all of those 12 people. For her to have any chance at the best God had in store for her, I would have to ransom her. I would have to give her up.

 

There’s a lot of talk about needing a village to raise a child.  It inspires pictures of tight community, shared burdens, and corporate worship. We love it because it’s beautiful to enter into parenthood with other families and walk the road together. But, community is hard because it involves real people with real flaws… and most of us only use that village when it is convenient or for short times of great need.

 

As parents of special-needs kids, a village is not an idea or luxury. It is a necessity. A terrifying necessity for me, a mom who is an ugly crier and the last in line to ask for help. Y’all, I am terrible at community. I’m an introvert who makes incredibly awkward first impressions and sometimes even worse second-impressions.  Enter God, who would ask me to rescue and ransom my child… and make me do it by entering into and trusting life with other people.

 

Apparently, God would be using Ry’s disability to work on me a little bit.

 

A year ago, we began the search for kindergartens.

 

Now, our family lives in this strange no-man’s land of an address.

We pay Kent County taxes.

We are districted for Ionia Schools.

We go to church in Rockford.

I shop at the Greenville Meijer.

I go to the Belding library and Lowell’s Goodwill.

 

So, when it came time to look for schools for Rylie Joy, we found ourselves within 15 miles of 4 school districts and 6 potential schools- and that was being picky. We emailed and phoned all of them… shopping, really, for information on how each school used their special-education money and resources.

 

One- and only one- school called us back and asked if we would come in for a meeting.  We met the kindergarten teacher, the special services coordinator, and the principal at Rockford Christian early one morning before, I believe, even God was fully awake. We talked for more than an hour about everything from curriculum to the Tigers to what makes Rylie laugh.

 

At the end, as bells were bringing students into the halls, the principal stood to leave.  “Whatever you decide, I want you to know we love Rylie,” he said- and then stopped as his voice caught. “and we would love to work with you in bringing out the best God has planned for Rylie.”

 

Now, I have since learned that Eric Burgess cries a lot. Bless your heart, Friend. It is my favorite thing about you, followed closely by our mutual good taste in sports and music.  While Rylie’s story and God’s potential in her IS beautiful, I know that Eric feels this way about ALL his students and staff. My child is not more special than any other kid that walks through his doors. She is the SAME... and after years of being different, it is no small joy to be the SAME in someone’s eyes.

 

It was an incredible moment for me. A decisive moment. I knew in an instant that Ry would be safe here, that she would be loved here, and that she would be challenged here. And I knew that I had to give her up.

 

This would be my price. My ransom. My sacrifice. I would give her up. Education was going to be far more expensive than I ever imagined… not in terms of discipline and money and budgeting, but in heart.

 

My COST? My cost is in trusting and loving the village to help me raise this child… to give her every opportunity to be the person God intends her to be. I pay every day- in the giving up and the giving over.

 

Rylie has thrived at Rockford Christian. I could tell it was a good fit immediately- mainly because she was coming home with WAY better hair than when she left in the morning. I mean, what magic is this? My child who does not allow a brush to touch her head is coming home with double braids, buns, high ponytails.  I don’t know who you hair-fairies are, but God bless you.

 

Rylie receives state-funded speech and occupational therapy through the Rockford Public Schools 4 times a week. They come to school and Ry has one-on-one sessions with her therapists.  Rockford Christian then takes those goals and exercises and expands them to fit into every minute of Rylie’s day. With Karen VanStright at the lead, there are 10 staff- funded by the Educational Support Services Fund- at Rockford Christian that work with over 40 children like Rylie who need extra help.  TEN extra STAFF passionate about kids like my kid.  Ten staff who are constantly looking for ways to make education accessible at every angle, for every kid. Staff who join us at doctor’s appointments to get information first-hand, staff who look up alternative therapies, staff who hang Rylie’s pictures on their walls.

 

Those staff are the hands and feet of the Shepherd.  They seek out those that would otherwise be easily lost. Those that are harder to teach. Those that are difficult to understand. Those that have emotional and over-involved parents. You are the staff who offer my child an education in a safe, exciting, and loving environment. Teaching my child that she is not only WELCOME, but EXPECTED. Our children are welcome everywhere these days. Kids with special-needs can be found in every Meijer aisle, McDonald’s play land, and Sunday school class… we are welcome everywhere. Of course.  But to be EXPECTED… well, that is something entirely different, isn’t it?

 

“Of course she can come. It’s not too hard. We’re excited.”  That’s what they said that morning… about my kid. Which was, in a word, liberating. As a parent, I had been feeling the exact opposite of that sentiment for months… losing ground and sanity at an alarming rate. But you were ready. If I was willing, you were ready.

 

Rylie loves school.  She loves it.  She generally leaves the house in tears (we talked about the hairbrush thing, right?) but walks through the doors with a smile. She goes to gym and music and recess… just like everyone else. The extra staffing at school allows Ry to spend the majority of her time in the classroom with her peers instead of in a more secluded resource room.  With the help of Karen’s staff, Rylie’s school day looks remarkably similar to her other classmates, despite a wide gap in communication and, *ahem* attention issues.  She has to communicate with her friends, she has to sit through circle time, sometimes she even has to go to the principal’s office… just like everyone else. But she has breaks. She has an aide. She has extra tools to help even the playing field.  You made the school… fit her. I just, well… I didn’t even know that was possible.

 

School systems, both public and private, are overwhelmed with funding and staffing and curriculum issues.  The Educational Support Services fund is an example of what it looks like for a community- a neighborhood, really- of like-hearted people to say, “We can make this better.”  It is a grass-roots effort to give our specially-abled kids every chance at discovering their full potential in school and every day life. You looked at a difficult, threadbare situation and said, “It’s not too hard. We’ve got it covered. We’re excited.”

 

The Educational Support Services fund helps over 400 students in our Grand Rapid Christian schools.  That’s 400 kids with families that want nothing more than for their child to be loved and challenged and an active part of the body of Christ.  Supporting the fund does so much more than simply add staff or resources to our schools- it ministers to the family standing behind that child.  It tells a family that the body of Christ is incomplete without them. Imagine. Being flawed, but being needed.

 

It is a universal desire.

 

The Gospel of John, chapter 9, tells the story of a blind man. And everyone wanted know why he was blind. Who’s fault… his parents or his own?  Jesus told them that the answer was neither. He was blind so that the works of God could be revealed in him.

 

No family wishes for special-needs. Life is fraught enough without the added troubles of exceptional emotional and developmental and physical delays.  Therapy and IEPs and medications and specialists and waiting rooms. There is a desperately ugly, lonely side to special-needs.

 

But great struggle often allows for great perspective.  Without Rylie, I would not understand that a savior can come in the gift of a child, that community is not always painful, that surrender can be satisfying.  Were it not for my child, I would not know the joy of hard-earned progress, that most strangers can be trusted, and that a smile speaks every language. I would forget that my God knows the pain of seeing his child suffer, and that Christ fought to be heard his entire life.  Were it not for my child, so much more of God would be a mystery. But He has been revealed in her. And, He will continue to do this until Christ returns. She is flawed, but needed.

 

I have given you my greatest gift, my child, and you have treated her with dignity and love and grace.

 

To you who show your support in time, in funding, and in praying for the ESS… thank you. You are changing families by equipping our schools to minister to all shapes and shades of God’s children. For all the kids receiving love and therapy and education because of your generosity, I say thank you.

 

And thank you for having me tonight.


knock-knock

homework

I found this homework in Ry’s backpack last night.

It’s in Spanish.

I’m thrilled to see that, while English is still quite difficult for her, 8th-grade Spanish is going just fine.

Yesterday, I welcomed a beautiful woman into my home. I knew she was coming, and I knew she wanted to hear a little bit more about Ry’s story and our journey with Apraxia. I thought she was looking for stories to add to a newsletter… maybe reprint a blog or use Ry’s name as as example of what a happy kid looks like in school.

I did not expect her to ask me to speak at the 2013 Circle of Friends reception, which raises funds to underwrite the costs of the Educational Support Services program. Money raised from the evening help the Schools provide tutoring programs, educational interventions and extensions for special-needs children in the Grand Rapids Christian School system.

I said ‘yes’ before I really thought things through and so now I’m in. April 26th… it’s time to tell Ry’s story in-person. I’m a little nervous since I am a dish best served on paper and my mascara is 2 years old. But, I’m excited. A chance to talk about my girl? To sing the praises of the people who work with her every day? To meet the people behind the fund that allows my child and hundreds of others like her to have a fair chance at education?

Count me in.

Would you pray for me?  That I would be coherent, maybe a little funny, a lot encouraging and –especially– that I would not tuck my shirt into my undies.

 


Do you hear what I hear?

hear You think I have the wrong photo.  A story about hearing should have a picture of an ear, naturally. But listen… listen to my girl. Listen to her speak.

You will hear her at age 2 and a half.  There are very few words but tons of expression.  You will see that she is thinking. She notices there are cows in the book. She notices that she’s wearing cow pjs. She says ‘eeeez’ for cheese and lots and lots of MAHM (mom) for filler words. She’s in there, and she knows it.

You will hear her at age 4, after 2 years of therapy.  You will hear me prompting every response and you will hear her answer awkwardly but correctly. One-word answers, but with joy. Lots of new words in 2 years. ‘Neigh-neigh’ for horse and purple and Bubba could possibly be the same word… but it’s what she can do. It’s inarguably progress.

And now, she is 6. She speaks like your average 2-year old, but we are MILES, states, and continents from where we started. She has different, distinctive vowel sounds and a regular rhythm.  She is so, so very far behind her peers… but she is moving forward.

It is music to my ears. The difference is stunning. Perhaps you have to have lived through the last four years of therapy to hear it. Perhaps, just maybe, it doesn’t sound like much has changed. I get that. But hidden there in the effort and the smiles and the consonant-vowel-consonant combinations… hidden there is something I have not heard before.

It sounds like possibility.

reading a book (age 2 and a half)

talking about her horse (almost 4)

reading a book (age 6)

doing her vocabulary words (age 6)


out of the mouth of babes

Once a week, Rylie rides at a local barn dedicated to serving children and adults with special needs.  We’ve been on a break since summer because they’ve been swinging hammers and putting up new walls. Oh, how we have missed our horses!

Thursday, we returned… but on a new night at a new time with familiar but new volunteers. As L came to grab Ry and take her down to the mounting block, I took a moment ramble on and on… and on… about some new things Ry’s been working on.

Hi, L! Super excited to be back. Hey- Ry and her SLP have been working on a new word… a word she can say when she wants to say something nice but can’t think of how to respond or doesn’t have the words to respond (you know, she gets stuck… and this give her a chance to participate more than she can now). But, you’ll prolly have to remind her at first. We’re still working on it. What’s your word, Rylie-O?

I turned to Ry, prompting her.

Nothing.

Right. So, the word is NEAT. So, if you guys are walking tonight and you are telling stories, maybe use the word NEAT, you know? Back and forth… so you can practice having a conversation and taking turns. Maybe when she’s posting or makes a basket in the little hoop out there.  You know? Great. How was your Christmas?

Um, it was great, thanks! You know, actually, I’m just in the barn… not in the ring. I’m just walking Ry down tonight.

Right. So all that stuff I said before? Completely unnecessary for you to know. Too much information.

Well, sort of, yeah.

We stared at each other for an awkward second… until the silence was broken by a 6-year old’s voice from beside me:

Neat.

Say what you will about her voice; that child has impeccable timing.


a letter to Carson

Hi, there, Carson!

How are you today? I am fine. My name is Mrs. Mulder… Rylie’s mom. You and Rylie are both in Kindergarten this year, and you both seem to love it. You also get to ride the little yellow bus with Ry because both of our families live out in the country. Do you love the bus? Rylie loves the bus.

I have to apologize to you, Carson, because I only just learned your name. I don’t know all of the kiddos’ names and faces in Ry’s class because I don’t hear the funny (and, oh yes, naughty) stories like most kids tell their parents after school. Much of Rylie’s day is a mystery to me… at least, from her perspective.

You see, Rylie has trouble talking. She has trouble getting her brain to say the words she wants to say. She can’t tell me exactly what she wants for dinner or what songs she sang in school… and she can’t tell me who she plays with at recess or what her dreams were about the night before. Not exactly. The words are coming… boy, howdy they are coming! SO many new words just this year! But nothing like the chatter your mom probably hears.

Anyway.

Kindergarten cupcakes

Carson, I have a story to tell you. I wanted to tell you this story so you will always know that you are AMAZING and wonderful and super, super awesome. See, just before Christmas, Ry brought something special to school and it got lost… immediately. Like, before she even got off the bus. But no one knew what it was because she couldn’t tell anyone exactly what she was missing.

It was a terrible day. Your teacher told me that Rylie came in the classroom crying and pretty much never stopped until I came at the end of the day to bring her home. It was so bad, she said, that she had to give Rylie a time-out while everyone else went to Gym so she could cry and calm down and collect herself. So, she did. And, she eventually felt good enough to go to Gym.

And you know what happened when she got there?

You were saving her a seat.

And she was able to walk over and sit down and join in… and she was able to feel like she had a friend. It is the most wonderful feeling in the world, to feel like you have a friend! A friend who’s excited to see you, who misses you when you’re gone, who plays Lincoln Logs with you during free-time. Thank you, Carson!

Carson, you are a good friend. I hope that I can be the kind of simple, loving, unconditional friend that you are… one who saves seats and plays alongside and waves at the bus stop.

I don’t know if you will know Rylie all your school-life. But, I know that I will remember you. I will remember the sweet heart that you have and how friendship can be easy and forgiving. That’s a remarkable lesson for someone my age… and certainly notable that I would learn it from a 6-year old.

You shorter people are always such incredible teachers.

Thank you, Carson.

Let me know when you wanna talk about prom.

Love,

Ry’s mom


lost in the quiet

We lost Rylie on Sunday.

Or, rather, Rylie lost us.

I wasn’t even there and, yet, I cannot stop thinking about it.

Rylie is a shadow… she sticks close.  So close that often I have to physically push her away to make dinner. Read the mail. Take breath.  Losing Ry has never been a problem.

There is one things that Ry loves more than her parents, and that is Apple. So when she and Curt went to town on Sunday to fix the disaster that was his iPhone, she was immediately at home with the iPads and the nanos and the iPhones.  All those screens.  All those those shiny, beautiful screens.

When Curt stepped forward to talk to the salesman, he stepped out of Ry’s line of sight.  When he turned around a couple minutes later to do a visual check-in, she was crying.

You know that feeling…

when your kid thinks they’re lost and you know they weren’t really lost but they’re terrified and so you’re terrified for them? It will break your heart.  Curt told me that 5-second story as we were falling asleep Sunday night and my heart still aches.

There are days when we completely forget that Rylie cannot talk like the rest of us.  Her disability is invisible, and from a distance she looks like every other kid in an Apple store… thrilled.  Even the getting lost part… totally normal kid experience, right?  Everyone’s been lost at one time or another. It can be easy to forget- we celebrate days we forget– that she’s got this little thing called apraxia!

But then the ending slaps me back into reality.  How does my child ask for help?  If Curt weren’t there, if I weren’t there, if her teacher her friends her brother weren’t there… how would she tell someone?

She can’t.  

She can’t verbalize our last name, our phone number, our address. She just knows she’s supposed to be with us.  And so it’s taken 6 years to realize my greatest fear- that her jumbled voice means she literally cannot ask for help.  Cannot explain to a stranger why she’s crying.  Cannot find her way home.  Ry is amazing at getting her point across… but this is one area that is beyond her.  Because when you’re afraid or hurt, nothing comes out right… for anyone.

Practically, I need some ideas.  Phone numbers in her clothing? A medic-alert bracelet?  What? What do you do?

Spiritually, I need some calm.   I cannot live every day worried that she will come to harm. The world is a hard place, but Ry brings out the best in it.

Emotionally, I need some courage.  Plain, old-fashioned courage to let that girl grow up and walk away from me.

And I’m thinking my neighborhood, my village here, can help me with some of that.

We love you here at TexasNorth.


one past whatever

I spent hours and days and years as a ropes course facilitator.  You take a group, you start low and slow, and you build.  You build familiarity, esteem, respect, challenge, and comfort.  It’s an exercise that is meant to translate beyond the woods, something that will help you cope a little better with daily life.

The last activities are usually quite hard: climbing poles to zip lines and obstacles courses 30 feet in the air.  As an anchor and instructor, I care about one thing: that last step. I made some version of the following speech every time:

At some point in the next couple hours, you’re going to reach your limit.  You’re going to look down at me from the pole or the platform or the wire or the rope and you’re going to say, ‘I am done.’ I get that. Everyone has different limits, and that’s absolutely fine.  But, I’m going to look at you in that instance and I’m going to say, ‘I hear you.  I need you to go one more step.’

I’ve worked with you all day. I’ve watched you work and I’ve watched you play.  I’ve stepped in and I’ve  stayed out of the way.  But here… here is where I use what I’ve learned about you today.  Here is where you tell me you’re done and I say, ‘Yes.  Fine.  AMAZING JOB. Please do me a favor… and go one step past what you think is possible.  I PROMISE YOU IT’S POSSIBLE and you will be fine.’

For some of you, that will be putting on the harness and then touching the pole.  For others of you, that will mean climbing the pole and doing one obstacle.  For a few of you, it will mean doing it all blindfolded.  It matters not to me where you are in that spectrum… only that you trust me in that moment when I say, ‘Alright… one more step.  One past where you are, and you’re done.’  

Are you in? Will you trust me to take you one past whatever?

Inevitably, they would all agree and we would finish out the day surpassing all our expectations and then some.  Without exception.

Our transition into private Kindergarten has been remarkable.  Rylie is thriving with the mental and physical challenges of a new school and new teachers and new friends.  She loves everything.  We love everything because she loves everything.  It was absolutely the right choice.

Our transition into a new district of special-needs therapy has been less-than remarkable.  I spent most of Monday crying to people I do not know, trying to understand why- after 3 years of meticulously  documented and continuous therapy with public school district A- we must start all over with public school district B.  Why am I filling out forms again, writing out birth stories again, stating objectives on State papers, pushing for therapy we do not want but desperately need… why am I doing all of this when it has been done and done and done- again?  We are losing precious time!  Why are they doubting- and even discrediting– what therapists who have worked with and loved Ry for three years have found, discovered, and recommended?  The frustration turned, as it always does, to doubt.

Hey, God?  I’ve reached my limit.  Are we done? Can we be done?  Is there more in that kid or can I just let it go and slide into maintenance mode?  I’m here to tell you, I am done.  Finished.  Tired.  There is no fight left in me. I cannot prove to one more person the potential that exists or the needs that persist in my child.  I cannot do it.  I am done.

I cried ugly tears because I was exhausted and defeated.  Then, because there is no rest from life even when you cry ugly tears, I picked up Ry from school.  I asked her to show me what she had learned that day, expecting a quick game of charades explaining she played with her friends and she loves Mrs. B- the usual.  Instead, she backed up to the wall and signed for me to watch.   She took a big step forward with her right, took a big step forward with her left, and then began to skip.

TO SKIP, Friends.

For seventy-thousand-th time that day, I cried.  It was not just skipping, you see.  It was proof.  Friends, Rylie skipping is proof that it’s possible for both sides of her brain to communicate together and for her muscles to interpret that communication quickly and correctly.  Rylie skipping means she may be able to read one day.  Rylie skipping means… well, it means we are not done.  I can hear my God as clear as day:

I know you are discouraged.  I know you are tired.  I hear you.  But, I need you to go one more step.  I’ve prepared you for this your whole life.  Look at how far you’ve come!  Look at your little girl!

Where there once was no sound, there are words.  Where there once was no writing, there are letters.  Where once there was no walking, there is skipping. There is more to come.  We are not finished. She is not finished… not by a long shot. There is more in that girl and she needs you to fight.  I need you to go one more step.  Take one more step.  Let me take you one more more step.  Are you in?

Brilliant Teacher, to use my own words against (?) me.  Like He knew they’d only make sense to me if I’d used them myself to move a thousand other people stuck in a moment.  Like He planned my life around me working through other people’s limitations so He could help me through my own.  Like He knew I would have a little girl would need me to fight for her… to go one past whatever for her.

I’ve said it before, and I’ll say it again: Rylie has no clue she has different limitations than most kids.  It would appear that her special-needs are meant to draw me into a better Light.  You have to love a God who makes things like skipping into miracles.

Send the papers, the evaluations, the meetings, the questions.

I’m in.  Let’s go.

One past whatever.  I’m on the ‘whatever’ part.

[really great article HERE… read when you have a moment]


breaking bread

Dear Rylie,

A week from today, you will officially start Kindergarten.  s c h o o l.  School with a bus and big kids and little kids and lunch time and recess and raise your hand if you hafta go to the potty.  School.

You, Child, you will love school.  You will love all the people and the routine and the jobs and the walking in lines to new exciting places like music! and gym! and art! I’m a little jealous.  It’s been a long time since I went to art wearing my dad’s old t-shirt.

I wanted to steal a second to talk to you… about talking.  Rylie Girl, you were born thinking differently.  And, God bless you, you were born SAYING things differently.  I pray this works to your advantage.  You’re headed to the Big Time now and I won’t be there to interpret for you or speak up for you or prompt you… not like now.  So, I want you to start off on firm ground.  And that has less to do with speech and everything to do with heart.

See, me and you- we’re fighters.  We have strong opinions and we are actually really decent at getting a point across.  I see this in you already, even at 5 years old, even without a voice.  Folks like you and me… well, we need to be careful.

Time was, you could hear something, not understand it or not agree with it, wait until the person was finished talking, and then say your piece.  This is rarely tolerated anymore… not among strangers, and truly- be careful with close friends.  The art, the joy, the discipline of debate and safe discussion is quickly being shelved.   Where you could once spend your life thinking out loud, learning, asking questions, and growing you must now pick a side and run to that wall without being caught or face the consequences of isolation.

*sigh*  Like you don’t have enough to worry about already.

There’s a beautiful concept in the Jewish culture that is literally as old as the sea.  Men would (and still do) spend hours and days, weeks and years debating and dreaming passionately over Scripture.  Interpreting.  Teaching.  Picking apart words.  Counting syllables.  Laying down, as it were, the Law of the land.  Conversations regularly ended with no resolution to either argument.  And they were (are) pleased by this.

These wise men… they did not agree on everything.  Sometimes, reading their commentaries, I wonder if they agreed on anything.   But here’s the kicker: after arguing for hours every day, they would pack it all up and eat dinner together.  They believe (and I agree) that you can debate with heart and still break bread together at the end of the day.  When hearts are on the same page, relationships are more important than resolutions.

Here is what I say to you:

I know, it’s kindergarten. You won’t be debating government policy or church theology in kindergarten.  I know.  But, here is where your table begins to fill up with people other than your family.  Here, you will meet people who think and speak and act differently than you, if ever so slightly.  They will pick different colors, go on different vacations, worship at different churches, pack different lunches, ride home in different cars, and dance to different music.  It starts here.

I pray you will meet others… even in Kindergarten… who will join you at your table.  People who are of the same heart but all different shades of mind.  Disagree. Debate. Yell, laugh, cry, and share- passionately.  But do not let it go so far that you cannot return to the table in the evening together.  Be prepared, if not eager, to share a supper when it is all finished.  Hold that concept close to you in everything, for it is the level ground beneath your church.

Take your seat.  Save me one next to you.  And, at the end of the day, may your table be full.

I love you.

Mom


look at what I made

She is drawing.  Writing.

The tip of her tongue sticking out tells anyone at a glance that she is working.  Hard.

It is hard.  For a few obvious and a million secret reasons, it is very hard.

She is tired, and there are tears.  “It’s just a picture, honey.  Try again, try your best.  But try not to let it get to you.”

She rights her grip on the marker- like her OT has shown her a million times– and starts again as I wander down the hall.

I am lost in research when she finds me 15 minutes later.  She wears a smirk on her face and a twinkle in her eye.  She is hiding something- though, not very well– behind her back.

“Mom!” she yells, brimming with laughter.  “Face. Purple. No out!”

Look, she says in her special way.  Look at what I made.  It’s a face.  And there’s purple.  And I stayed in the lines.

Look at what I made.

It was so hard, she says.  But, I did it.

She is a parent.  I.  I am a parent and a wife.

It is hard.  For a few obvious and a million secret reasons, it is very hard.

I am tired, and there are tears.

“It’s yours, Katie.” He says to me in quiet moments.  “It’s for you.  Try again, try your best.  But try so very hard not to let it get to you.”

So I steel myself, I ready myself, for the next hurdle.  Joke.  Chore.  Blessing.  Miracle.  Opportunity. And, I start again.  A hundred times a day, I start again.

Because, one day, I expect to run to Him- when I get my 5 minutes alone- I will run to Him with a twinkle in my eye.  And I want to double over with joyful laughter when I show Him.

Look at what I made.

Thank You for believing in me, for trusting me.

A hundred times a day.  Thank you.

It was so hard, but I did it.


We’re on our way.

Rylie Girl.

Monday afternoon we had your final IEP meeting before Kindergarten next year.  It was a chance to meet with all your current therapists and hear how the past year had progressed.  Everyone was there to brag on you, Ry!  Becky and Becky and Brenda and Jessie and Pete… and even Mrs. Rachel and Mrs. Karen for next year.  Mom and Dad… and everyone.  We all came.

As much as we focus on details- numbers and charts and progress and scales and standard deviations- I will leave those to your official files.  Let me tell you that in a year’s time, you are now age-level (and sometime ABOVE average!) in your gross motor skills!  Well, in everything but ball throwing… but that’s genetic.  Sorry.

A year ago, you were barely on the charts.  And what’s important is not that you can run and swing and jump… but that your body can do it without so much agonizing effort.  That you can (usually) catch yourself before you fall.  That you can run and keep up with the boys… and lawnmower.  That your body is not fighting itself AS MUCH as it was last year.  The gap- that huge chasm of difference- is slowly closing.  Because once Gross Motor closes, next comes Fine Motor.  And once Fine Motor gets more under control, then comes Speech.  And once Speech comes, Emotions.  And after all that, Disneyland and basic world domination.

We’ll take it.

Kindergarten here we come.

Get ready.