I have always been a letter-writer. It’s how I process. While I realize this letter is directed at a specific person in our lives, I think it’s important for me to say things publicly… both easy and hard. It is an act of accountability on my part, not an attempt to teach parenting or relationship etiquette or special-needs love. For me, it’s just talking, out loud. Parenting, out loud. Living, out loud. Without writing, out loud, I tend to hide.
Dear teacher,
Welcome to Team Rylie! I know you have 20 other hearts to teach and love and guide this year, but there is one that is most special to me. I thought some extra insight in Ry’s life might help you understand the importance of what you do every day for our family.
You are my eyes, my ears, hands, feet, and heart at school. Don’t ever hesitate to tell me anything. Every tiny piece of information you give me helps color in a blank picture of life for Rylie outside this farm. Keep some secrets for yourself… some private jokes between you and my girl. I won’t be jealous of that bond. I want Ry to meet and know women who are trustworthy, funny, smart, and kind. I have tried for almost 8 years to open the gates to her village. Just know that anything you share is gold to me.
While I’m writing this, Rylie is in her room. She’s crying. This is actually really normal for us… which doesn’t make it awesome… just normal. She’s not mad. She’s just exhausted. All fifty pounds of her has given everything it has to walk, talk, and learn in the last eight hours in 2nd grade, and there’s simply nothing left.
I don’t want you to feel bad about that. I just want you to see- to hear, because she can’t physically tell you- that she’s giving you everything she’s got. All her laughs, all her balance, all her energy. She’s using it. She’s not holding anything back. She’s not saving it for later. School is the highlight and majority of her life right now, and I want all of her best THERE.
It will get better at home. As the schedule sets in, as the routine surfaces, as the dust literally settles, her little body will get stronger.
Let me give you some hints for our Rylie Girl.
(and let me remind myself)
She loves a job. Give her a job any job, and she’s money. She’s serving, she’s productive, she’s busy, and she’s happy. She thrives on being needed, being helpful. You want to re-focus her? Give her a job. You want to motivate her? Give her a job. You want to calm her down? Give her a job.
She gets hungry. Her body is burning calories just staying upright. Like, ACTUALLY staying upright. Her vestibular system is in overdrive 24-hours a day. Balancing emotions, academics, and friendships is all extra. She may need an extra Clif bar or banana here and there (and there and there) to keep her body working for her instead of against her.
The girl is always telling a story. In the absence of words, she uses her body to show love, joy, frustration, excitement, boredom, hunger, and humor AND she does it within 2 inches of the person next to her. This makes her hands sometimes deadly but always telling. I know (OH MY WORD I KNOW) this can be a difficult thing to navigate, especially when you have other hearts to consider. I know. Remind yourself and others (and me, please) that she’s doing the best she can with what she has at the moment. When she’s shown more, she’ll learn more. When she learns more, she’ll give more.
She dresses herself. I take no credit or blame.
Rylie loves to write. Take notes. Make lists. Copy signs. She saves paper, scraps, paper scraps, and anything that might be able to be paper or a scrap later in life. Writing and paper and pencils are freedom for her.
Sometimes, in spite of 12 hours of sleep, a full breakfast, and everything else right in the world… it will just be a bad day. Fierce hugs, a new pencil, and a lot of grace are the ticket here. Also, maybe a dance party.That girl can dance.
She will learn math and reading, Bible and science in your class. She will also learn how to ask questions, to say ‘I’ instead of ‘me,’ and to let others go first. She will practice manners and grace, music and conflict resolution. She will navigate being the favorite and being left out. Ultimately, these life skills and experiences are more valuable to me than any test score or IEP goal. Teach her to love and be loved. The rest is bonus.
I know that it will be both a joy and a challenge to teach Rylie this year. You will say that’s true of every student, but I know. She trusts you. She believes you. She covets your wardrobe.
And so do I.
All of it.
I am so glad we’re on the same team. You are a FORCE, and you were made for this.
Well, last Monday pretty much knocked it out of the park, Folks. Donations continue to come in and we are overwhelmed.
We raised above and beyond what I requested… which brings up a million questions for this girl who can process the life out of anything. ANYTHING.
Things that have been said out-loud over the past week: Do we let Ry pick out anything she wants? Do we give her limited options so the choice is somewhat practical? Let her pick anything! Be responsible! What to do with the extra after all is said and done? Open a savings account for Ry’s future fun/special needs? Save it only for future bikes for Ry? Give part of it away? But folks gave to RYLIE, so maybe we shouldn’t give part of it away. Folks gave to Ry’s BIKE fund, so we should only use it to buy a BIKE for Ry- now or later. We can use this money for anything for RYLIE. We can use this money for ANYTHING. Let’s go to Chicago! Folks gave to our family and trust us to do the right and fun and good thing. They entrusted me with the money, so I’m responsible for the money… but they trust ME, too, so CRAP.
You laugh, but it’s all true. There’s a sweet, kind, crazy responsibility in receiving a gift of this magnitude. Of sharing an experience and guiding the ship.
Thank goodness I’m usually only responsible for deciding what’s for dinner.
Curt was excited that this project gave his Inner Spreadsheet Geek the chance to do some serious research. Lawd, y’all. The research. I was all set to click BUY, throwing confetti and ordering the rainbow bell option with extra streamers, and he’s all like, “well… have you seen blah blah blah?” I do love this man and he is remarkable. I love him the most of anyone, really. BUT HE IS SO DARN LOGICAL AND THOROUGH.
Actually, I think what I said last night after anther hour of extended web-searching was, “I think we’re making this too hard. You’re making this too hard. You’re looking at way too many websites. I have seven tabs open right now. This is nuts.” and he said, “I can look at as many websites as I want.” and I said, “She wants a basket- THAT’S ALL SHE WANTS.” and he said, “You’re right. Have you seen these baskets?” And then I died.
All this to say, we haven’t made a decision yet, but we will. By tonight. I say so.
We realized quickly that there are 2 major options:
1. Buy a trike. (But what size? She needs a 20″ wheel right now but is right on the edge of switching to a 24″. She could ride a 24″ wheel for longer… but do we buy for now or for later? Maybe she won’t NEED a trike later?)
2. Buy a bike AND a trike conversion kit. (This allows any bike to be transformed into a trike. More expensive, but you kind of get 2 for 1. This is a bit harder than it seems, though. Ry is right in-between bike sizes, as mentioned above. There are also basically zero 24″, single-speed bikes with a front brake. BUT, we could pay for modification and our local bike shops are super excited to help. Hmmm.)
Putting all that web-research to good use (and clearing my brain a little), I offer you this abbreviated list. For anyone out there looking for some bike/trike options for kiddos and adults, here are some great sites we’ve found:
adjustable bike rack that holds 1 tricycle or 2 bicycles = $370
A major fact in our life is the “my sibling gets all this fun stuff and therapy and equipment and time and money and attention because she has some obvious special-needs” phenomena that is so common. Gus and Abby are young, but, trust me. They feel it.They know Ry gets to ride horses and they don’t. They know Ry sees different doctors than they do and plays in special rooms with SUPER FUN toys at school and is allowed snacks at random times. They don’t understand why, but they certainly see it.
I made an executive decision this weekend that the 36 donors would be perfectly fine with all three kids receiving new helmets of choice. Savvy? And, we’ve decided to take any extra left over post-bike/trike-selection and keep it for future fun, independent possibilities for Rylie-O. Now, we just have to pick the actual bike/trike.
ALL THIS simply in the interest of full-disclosure, honesty in relationships, and humor.
She was almost but not quite to the point of no emotional return. Her horse, Juliet, knew a lightweight when she felt one and took full advantage… stopping to graze whenever she wanted, veering off the beaten path. For 30 minutes, all 48 pounds of Rylie dug deep and pressed on. But then, it was too much. From 2 horses back, I could hear the anxiety in her voice as she commanded Juliet to, “WALK ON. NO GRASS.” I could hear the tears behind the effort, and I knew we were near the end.
Our leader, Jess, encouraged Ry to keep going. I kept Rylie talking about cows and Colorado, cousins and swimming for as long as I could. But after another 15 minutes of stopping and starting, Ry’s eyes had started to leak and her body was slumped in defeat.
Jess grabbed Juliet by the pony-lead and kept the line moving, instructing Ry to hold on to the saddle horn and keep her eyes forward. She wasn’t upset in the least, but I found myself biting my tongue.
I wanted to yell, “I’m sorry!”
“I’m sorry. Some things are really hard for Ry. It’s amazing that she’s doing this! It’s such a huge big amazing thing!”
I wasn’t worried about Rylie. I knew we’d bring her around, that she’d muscle through… I knew she’d do this. But I desperately wanted to explain to our leader and the other two guests.
To the grocery check-out clerk.
To the lifeguard at the pool.
To the other moms on the play ground.
I’m sorry.
I’m sorry she’s standing so close. She’s trying to memorize you.
I’m sorry we’re interrupting your lunch.
I’m sorry we’re making your job harder.
I’m sorry.
But the trail didn’t give me the chance that day to lay out the full scene that day. It did give me plenty of time to think, though.
Sometimes ‘I’m sorry’ is really, really important.
And, other times, it cuts life short. ‘I’m sorry’ robs people of their chance to be amazing, to do their job, to show grace, to walk with me.
I think I would rather be thankful than sorry. If we can make it through to the end of the melt down, the ceremony, the trail ride, the dinner… what I’d like to say is, “Thank you.”
Thank you for handling an awkward situation with grace.
Thank you for loving on my family and my child.
Thank you for doing your job well, whether easy or difficult.
Thank you for stepping up to the plate.
Thank you for lending a hand back there.
Thank you for being a great example.
It’s not my job to apologize for every instance of awkward or hard or annoying. Not every time. That’s just life, and we’ve come to expect too little of others… and of ourselves.
But I will, I absolutely will, go out of my way to encourage decency and beauty and simple effort. Because we’ve gotten a little low on that end, too, amen? So, call it when you see it. ‘Thank you’ doesn’t have to be anything but sincere. No flowers or extra tips or hand-lettered gift tags. The simplest effort with the greatest impact is your voice, your brave and shaky voice, stopping for two seconds, making eye-contact, and saying, “thank you,” out loud.
I’m on it.
P.S. Rylie? That girl finished a 2-hour trail ride on her own horse in the mountains of Colorado. We did not have to turn around. We did not have to get off the trail. We just had to make a few adjustments. It was a beautiful, beautiful thing.
II.
For years and years, kind friends and family and even strangers have asked if there’s any kind of donation collection for Miss Rylie Joy. The answer has always been no. We use state-provided therapy for speech and occupational/physical and what the state doesn’t cover, we pay out-of-pocket. Out of pocket expenses have been specialist evaluations, equine therapy, music therapy, and other doctors that insurance just hasn’t come on board with as of this century. Rylie walks unassisted and was blessed with an iPad for school-use… so there aren’t really any big, huge, amazing things that we’d love to have to make life easier.
BUT.
There is one thing that would make life super fun: a bike. And, not just any bike… a cool tricycle with a basket and brakes that are easy to use. A tricycle that doesn’t scream ADAPTIVE EQUIPMENT! CHILD WITH IMPAIRED MOTOR DEVELOPMENT ON BOARD!A tricycle that would allow Rylie Joy to ride with her friends and be the super-cool seven-year-old that she is… .while giving her a little more time to work on the balance aspect of two wheels. A tricycle would let her body practice the braking and starting and stopping without mastering balance at the same time (a perfect storm of overwhelmed-ness for most kids… Ry especially).
I want to buy Rylie a bike.
And I want to know if you’ll help me?
They aren’t cheap. And then you have to ship them. And then you need a helmet and OF COURSE a bell and streamers. But beyond the price of the thing… there’s the magic of simply coming together as a community of friends and pitching in $10 or $20 or $300 or $2.50 and making a sum larger than the parts… of doing it together because we can. You have cheered this girl on since before she took her first steps. What a joy it would be to give her a brand-new, shiny, YOU CAN ACTUALLY RIDE THIS bike- not on her birthday, not on Christmas, but on a random, ordinary, perfect day.
It’s a risk, I know. It’s not absolutely necessary and it’s not saving the world. It’s just something beautiful and fun and helpful for our girl. Honestly, that’s not something I want to do alone. It’s kind of too big for me… and I’m not talking about price. I’m talking about holding happiness. It’s meant to spill over and be shared.
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.
Never test another man by your own weakness. – Joseph Conrad
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.
Take it from me, a scar does not form on the dying. A scar means, I survived.
Little Bee, by Chris Cleave
Perhaps you saw this article whip through your facebook feed this week? Emily Colson took her son to a movie, and her son panicked, and the crowd applauded as they left. The comments are full of heartache and pragmatism, sorrow and shoulder shrugs.
It’s a difficult story for many reasons. Maybe because I expect better of grown ups. Maybe because I fear the same happening to me. Maybe because I have been every character.
I have been the jeering crowd and I have been the obviously wounded. I have been the parent in agony and I have been the silent condemner. I have been them all except the One who sees perfection before performance and beauty from ashes.
The reality is, we all walk with scars.
Ry’s special needs are diagnosed but invisible. She has no syndrome that explains itself silently to questioning eyes during episodes. Lord knows, literally, that some things would be easier if it were more obvious. On good days, we are a beautiful family. On normal days, we are a beautiful family with a child who struggles to keep it together. On any day, “that child” could be any one of my three children- or all of them.
Do we need a label to warrant grace? To deserve kindness? To receive love?
I am weary of the line in the sand reading “special needs.”
If we sit in a movie theater, chances are we sit near a veteran who is trembling from the larger than life gun blasts exploding in the previews. But it’s dark and we can’t see him taking deep breaths.
If we sit in a movie theater, chances are Ry sits near a veteran who’s sitting near a single mom. She will spend the hours in the dark with tears streaming down her face when the on-screen love leaves because she, herself, walked away years ago but the hurt is still raw. It’s dark in there… and we can’t see her.
Near them, a man with a cane who needs extra time to sit down. Next to him, a child incapable of being an adult. And next to that child, an adult who has forgotten what it’s like to be a child. We observers see nothing until the cup overflows.
Tread lightly.
My special needs are invisible. So are yours. And, so are the person’s next to you.
Should you find yourself taking shelter in a crowd throwing stones, I beg you to still your hands. Bite your tongue. Close your eyes. Tomorrow, it will be you on display in an awkward moment and there may be no one to explain or willing to understand.
I am desperate to teach my children that there is not one person walking this earth without a hole in their heart. Every single one of us is aching to simply be loved. Some days, it’s glorious and full of sunshine and easy. Other days, it’s a battle to walk straight with the invisible weight of the world on your shoulders. But most days… MOST DAYS… you are basically fine.
Someone around you, near you, next to you… some one obviously or secretly or on a thin line in between the two… someone is not basically fine.
Do you see the signs? Invisible signs all around you read, identify, and explain:
My father left me.
I can’t do math.
I’m in a dangerous marriage.
My nerves are on fire.
My voice doesn’t work like yours.
I hate the way I look.
I’ve lost 4 children.
We can’t pay our bills.
Be you marked and obviously bruised or a quiet soldier, be kind. And if you cannot be of help, simply be quiet. And in that quiet, pray.
Pray to understand what it is to be loved by a crowd and then crucified by the same. Pray for healing of your own needs and to be a healer of others’. Pray for a raw heart and a gentle smile. Just pray.
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.
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.
Today’s post comes from Tif, who writes regularly about family life over at MIDST.
Do You Hear What I hear?
“’Tis the season to be jolly… Falalalala… la la la ala la.”
I sing (under my breath) with the utmost of sarcasm. How can we be jolly… with all this “stuff” and with all this “noise” around us? As children we are surrounded by the excitement, the traditions, the little happy spots of the holidays. We have parties, ice skating, parades, lines for Santa, cookies to bake, neighbors to sing with, and of course, the Christmas pageant. All these things we loved as children made the season so bright in our eyes. Now, as moms, we want to share that same giddiness, that same excitement, with our own children- so we pile it on. Why not, right?!?! “The more the merrier,” isn’t that what “they” say!?!
I remember the spark in my first son’s eye… the wonder of it all…. The staring at the colors and lights, the chewing of ribbons and hiding in boxes. Having a child changed my life. It changed the way I saw Christmas- seeing it through a child’s eyes again made me feel young at heart… and in such awe.
Then Bjorn was born. He was a boy who would hide away in his room all day long; he had no desire to interact with others. He could sit in his room, in his quiet safe space, never speaking. Never connecting. Never touching. A boy who could disappear from it all…. living in a space of void.
As a mom of a special needs child, my life had changed from experiencing life with my child to advocating for him. I sought out what was best, what might work, and worked through all of the trial and errors. All year long I fought for my child- for his voice, for his touch, for his very existence in a world where relationship and connecting is key.
Then the season of Christmas came- and I want so much to share this season of “jolly” with him. I froze… How? How did I bring a world of big, bright, loud, full, crowded, and more into the life that desired routine, structure, calm and quiet reign. We had a problem… our two worlds collided….
Our first three Christmases, Bjorn never joined us for more than 5 minutes. He would open one present, walk away, and go back to his room. We rarely went out, we never went to parties… and decorations never came out until two days before the 25th. I was sad. Not just for him, but for (I’m being honest here) myself. Here I wanted to “do” all these things… to experience all these with my boys… and I couldn’t. Let’s be real here… I was having a holiday pity party with the table set for one- me!
Then I began to pray and pray and pray. How was I going to bring the Light of the World to my child who didn’t know how to be part of the world? I then began to listen. Listen to my son. Listen to my Lord, and listen to the Truth. It was amazing what happened when I took my eyes of what I wanted and looked at what my son needed.
This is what I heard… STOP. SIMPLE. SHARE. And BE.
The first thing I learned was to STOP. Just STOP. I had to stop my expectations for what I thought was important and begin to listen (really listen hard) to what my son needed. This listening was hard to do, because it meant putting myself in his place, a place I had never known. But I had to listen to what he heard during this time of year. Once I did, I was shocked when I figured out he heard a “hum”, a hum that was loud, piercing, and really painful. It wasn’t an audible hum… but a hustle-bustle type of hum that scared him. At times the hum was so inaudibly loud that he would just cover his ears, wanting it to disappear.
The second thing I learned was to keep it simple. Simple meaning…. Not too much, and as little instruction as possible. I would plan one activity for that season… one thing that would show him the “holiday spirit” and invite in the story of our Savior into his little life. Simple and sweet…. If it went well I could add the experience to the next year. Doing this was allowing him to process, to digest, and to experience at his level. Honestly, sometimes his process time took weeks… weeks! So, in the Spring he would say something about Christmas that would knock my socks off – and that is how I knew, giving him too much never gave him the time to process the experience- but once he processed it, he could relate to it.
Thirdly, was toshare. I talked and talked and talked. I shared about what we were going to do, when we were doing it, what it was going to look like and what possible surprises we could expect. This was intentional preparation… basically “covering the bases”. I also shared with him the safety things he could do if he was overwhelmed or needed to communicate that he was not feeling right. We began to set up a signal that he could make if I needed to get him out of the room to a quiet area for him to just seek out the calm he needed. I became his trust…. He knew that he and I were a team, and that I had his back in times of trouble. This moment was huge for us! HUGE! (side note- make sure you keep your sharing simple too. Limit your words to 3-5 word sentences. Be direct and to the point. As a mom, I always forget this rule… and over share… you know… the TMI rule. With Special needs kids… there is such a thing as TO MUCH INFORMATION! Trust me.)
And Finally… BE. Be in the moment. Be Christ to your child. Be the gift that the Lord gave to us… Be your child’s hope. Be your child’s love. And Be your child’s peace. May we all see the season as one that is focused on BEING with each other… Once I realized that the holiday season was not so much about the excitement of doing but in the magic of being, it wasn’t my son who changed… It was me.
Now I sing a new song… a song that is beautiful and perfect…
It is one that rings “all is calm, all is bright”.
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[(in)Able is a community group for moms of kids with special needs. We’re a part of a larger group of women in all stages of life over at (in)courage. Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]
Rachel is a child of God, blessed wife and stay-at-home mom to three, the oldest of whom has a variety of needs surrounding her visual impairment (resulting from her severe prematurity), ASD, and mild intellectual disability. She blogs at This Journey Our Life, to share her personal journey of special needs parenting, encouraging others who find themselves on a similar path.
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Running to Him
Desperate for help, I felt the urge to run.
Somewhere.
Anywhere.
The walls of my world were caving in around me. Helplessly, I looked on at my daughter who needed to be rescued.
“Will somebody please help me?”I tried to cry out. Instead, my throat choked on its scream.
It was like those nightmares where you want to run but your legs won’t move; where you need to scream, but you can’t.
Silently I stood back.
Waiting.
Watching.
My daughter was slipping away, and there was nothing I could do to stop it.
She needed help.
But it’s hard to help when you don’t know how.
I scanned the crowd, searching for someone who would stop to offer their assistance.
If someone shows me what I need to do, I’ll do it! I thought. Anything to save her.
These were my feelings throughout a large part of the past school year. Overall, Cami’s struggles had grown more complex, and every solution appeared impossible. Help seemed out of reach.
I was frustrated and fighting despair.
But a phone call changed my perspective and brightened the pathway I had been trudging along.
Immediately following a difficult conversation with one of Cami’s teachers, I called my mom. In between heaving sobs I updated her on the situation, sharing the most recent struggle.
Answers were uncertain, but I knew my daughter needed help.
I needed help.
I told my mom, “I wish it was as easy as running outside to a crowd of people and screaming at the top of my lungs:
SOMEBODY PLEASE HELP ME, SHOW ME WHAT TO DO!”
Her response hit me hard:
“Rachel, it is.”
The truth of her statement sent chills down my spine, and my throat tightened as more tears spilled down my flushed cheeks.
There is someone Who is waiting to help. Someone Who will show me what to do.
That night I ran to Him.
And still I run.
{Proverbs 18:10}
The name of the Lord is a fortified tower;
the righteous run to it and are safe.
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[(in)Able is a community group for moms of kids with special needs. We’re a part of a larger group of women in all stages of life over at (in)courage. Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]
Today’s post comes from sweet Kaylee Page. Kaylee (and husband, Dan) have one daughter, Miss Bella, who lives in a world of FPIES, EoE, Delay in Gastric Emptying. Kaylee works full-time at Start Garden and fine-tunes plans to take over the world while driving to doctors’ appointments.
Strength and dignity are her clothing,
And she smiles at the future.
Proverbs 31:25
The version I read years ago said “laughs at the days ahead.” How odd, I thought. How can you laugh at what you don’t know. It took me a while to realize that this woman, this Proverbs 31 woman, had a deep trust and understanding that God was and is in control. She can do this little internal, perhaps sometimes audible laugh. But not always the type of laughter we think of laughing at a quick joke. No, it’s a laughter that’s like a “Ha, only you, God. Only you could make this story beautiful, funny, unbearable, full of suffering and sorrow, but amazing, and honest and good, and weird, and humorous and comical and full of miracles. Create moments that take my breathe away. Only you know what would set me off today. Only you know what my heart needed today. Only you could design a life to make me more like you. Somehow, only YOU could write this journey.” It’s the laughter Sarah had when she found out about Isaac. It’s gratitude. It’s the relief. It’s the fact that she’ll be a grandmother’s age at story time with all the other young, hipster moms. Or I can imagine Mary, the mother of Jesus, had a similar laugh when the Angel Gabriel told her about having the son of God – knowing, the honor and yet the difficulties this would all bring.
So today, ladies, you are clothed with strength and dignity. You are amazing! You are worth far more than rubies. Lord truly knows, you’ve gotten up while it is still night and provided for your families. You set about your work vigorously; your arms are strong for your tasks. You are a virtuous woman indeed! And God delights in you.
He is proud.
May you have moments that make your heart light today. May that light-heartedness come from a deep, intimate trust and understanding that God is in control. The days to come are, each one of them, going to be okay. They may be better than okay or they may be quite difficult. Whatever steps they may be, they are the beautiful steps he’s laid out for you. Tough as they may be, smile. Not a fake, plaster smile. The smile that totally gets heartache, pain and disappointment. It’s the smile that creeps up for some reason in the middle of the sobbing. It’s the smile that creeps up when you watch your child grow and accomplish something new and exciting. It’s the smile that’s the deepest breath you can imagine. It’s a smile that calms your heart, soothes your soul and gives you the unimaginable peace your heart desires, even if but for a moment.
Praying for your hearts today. Praying for the smile to creep up on you. But also praying that if your heart is just in no way close to being able to smile, that God would rest deep within you, settle His way in. That if the smile is impossible, that at least there is a moment of rest. The rest maybe needed to get you a tad bit closer to that smile.
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[(in)Able is a community group for moms of kids with special needs. We’re a part of a larger group of women in all stages of life over at (in)courage. Every other Wednesday, you’ll find a letter here specifically (in)couraging and (in)abling women in their journey as a mom of kids with special-needs. You can join us daily HERE.]
Hey! I'm so very glad you stopped by! This is where I process life with 3 children, 25 longhorn cattle, 5 chickens, one dog, a super cute husband, and a habit of losing my keys by untangling words and feelings into stories. Grace, peace, and much, much love to you today.
A Circle of Quiet, L'Engle
Five Smooth Stones, Fairbairn
The Book Thief, Zusak
The Secret Life of Bees, Kidd
A Tree Grows in Brooklyn, Smith
The Killer Angels, Shaara
East of Eden, Steinbeck
The Power of One, Courtenay
Apple pie, anyone? 
