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.
And thank you for having me tonight.