Stefanie Boyce

@stefanie-boyce | contributor
Stefanie Boyce is a national speaker, spiritual director, and author of two Bible studies designed to help participants create space to be with God, and have deep conversations about what they are learning. She is best known for her perspective when it comes to finding beauty in difficult circumstances. In 2009, Stefanie and her husband got the news no parent wants to hear. Not one, but two of their children were diagnosed with a rare, genetic disorder, Sanfilippo Syndrome. Children progress until about the age of three, then slowly lose the ability to walk, talk, feed themselves, and eventually pass away. There is no treatment. No cure. Three years later, knowing the risks associated with having another child, they welcomed, their daughter,Elliotte and began a new part of the journey navigating typical and terminal, simultaneously. November 2017, Jayden (11), went home to be with the Lord and just eight months later, their daughter, Brooklyn (9), did too. Committed to thriving, not just surviving, the Boyce’s continue to navigate difficult new normals, always trusting God to reveal the beauty in the midst of such devastation. In Stefanie’s honest, real life approach that people have come to love, audiences have found encouragement, inspiration, and renewed hope. She speaks on a number of topics offering a redemptive perspective on suffering. Through creative teaching, Stefanie uses everyday items and stories to highlight God’s truth. In addition to speaking around the country, her work has been featured on The Mighty, other guest blogs, and Don’t Do This (https://www.amazon.com/Dont-Do-This-Learning-Screw-Ups/dp/1942145241) She has been a guest on Melissa Radke’s Podcast, Ordinary People, Ordinary Things, and is currently working on her first book. Stefanie enjoys connecting with people and holding space for people to grow ever closer to Jesus whether that is one on one through private spiritual direction, writing, teaching or training small groups, or keynoting an event. She is a wife, forever a mother of three, and dreams of a day she can have a little farmhouse with an old truck to call her own.
Stefanie Boyce

The Highs and Lows of Anticipating Grief

“Darling, you feel heavy because you are too full of truth. Open your mouth more. Let the truth exist somewhere other than inside your body.” — Della Hicks-Wilson I feel “ick” today. Heavy. Maybe a bit sad, or tired — I am not sure which. Or hungry. Those three tend to blend together. My kids, Jayden and Brooklyn are fine; not sleeping, but fine. As fine as two kids with life-limiting conditions can be. In fact, most days, I fear they are doing a better job of living than me. My husband Justin says I am too hard on myself. Perhaps. My daughter Ellie is great, too. Still asking a bunch of questions, like many 4-year-olds do, and playing baby. Specifically, “a baby named Ellie who talks with her eyes. And crawls. And walks. And laughs. And giggles. And sleeps.” Every day. Ellie has this book, “In My Heart: A Book of Feelings,” which I feel you must read to your children. In fact, everyone should read it. It talks about how some days, our hearts can feel as heavy as an elephant. Yeah, that’s how I feel — heavy and a bit jacked up. And I am not exactly sure why. It could be the weather changing, the silence of the house now that the kids are back in school, the lack of sleep, or feeling like I am constantly failing at life. I am not sure — but today is a heavy day. Yesterday wasn’t. Yesterday was a light day. A busy, productive, house-full-of-people day. A day for laughing. It seems the busier I am, the less heavy I feel. Not that heavy isn’t there; it always is. I just don’t feel it as much. Anyway, yesterday, I felt good. Productive. Present. Engaged. Today, two coffees and an expresso in, I am tired. It comes like waves, doesn’t it? Grief, anxiety, doubt and sadness. Connection, bravery, resolve and productivity. Wavering seems normal — the rhythm of life, I suppose. I like that negative feelings come and go, but I’d love for the good ones to be a bit more consistent. The moment after I sense a burst of warrior spirit, or fierce confidence, or “go get ‘em” attitude, it just vanishes. I imagine it’s a lot like surfing. I fight to get out far enough past the break, to the place I can even catch a wave. I wait. Wait for the rise, the invitation. I feel it swell. I participate. I ride the wave until it disappears, until I am sucked under and tossed about, finally finding myself right back where I started: the shore. The place I tried so hard to leave. No matter how hard I try, I can’t stay on top of the wave. I can’t stay light. But no one does. That seems to be the art of surfing. The rise, the ride and the repeat. I feel that is the art of life. And we hope, at the end of the day, we’ve either moved a bit more down the shore, or at least survived the sea. We hope we can look at our life and say, “It was good.” I waver between feeling strong and feeling weak daily. The moment I believe “I got this,” it’s gone — fear, doubt and panic take its place. It feels like walking in circles. I try so hard to get to a place of peace, acceptance, normalcy — only to realize all I have done is worn deeper the path back to the start. But what is left behind after years of our wandering? A path we’ve walked so many times before — full of memories and reminders. A path for others to travel. I have heard grief isn’t linear, and I suppose anticipating the grief of losing my children isn’t either. So although we have been here time and time again, it is never exactly the same. Certain things feel eerily familiar, others feel heavy and new. When we keep surfing, keep walking, though, something beautiful can happen. We can get stronger. We can build muscle memory. We can leave bread crumbs. That’s why we keep showing up, because we have learned truth exists in the tension of light and heavy. In the rhythm of the rise and the fall. That is the secret. The sweet spot, the hardest spot, in the center of the tension and the rhythm. It may be exactly where we need to be. It gets harder. It gets easier. It’s both. That’s the art of life. Image via Thinkstock. Follow this journey on Stefanie’s blog. We want to hear your story. Become a Mighty contributor here .

Stefanie Boyce

Sanfillipo Syndrome: Confessions of a Parent Anticipating Grief

“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.” — Ernest Hemingway, “A Farewell to Arms” Hey guys. I am broken, but not destroyed. Whenever God is stirring, changing, growing me, it hurts. Growing pains, I suppose. I am happy and sad. Hopeful and discouraged. Joy-filled and empty. I want to change and I don’t. I want to speak out, and I want to hide. All these opposing thoughts, swirling, fighting, all in conflict and all in the same moment. Should I smile or should I cry? I feel both. I want to tell you everything, but everything is too much. I want to tell you I am clinging to my son Jayden’s breaths like any one could be his last. His Sanfillipo syndrome diagnosis means his life expectancy is 10 to 20 years. He is 10. I want to tell you I feel God preparing my heart to let him go. I want to tell you this year may be his last. But I don’t want to tell you, too. I don’t want casseroles or cards or extra pity. I don’t want to put nails in his coffin prematurely, so I try not to stay there. This is truth. But I also want to tell you he’s laughing more. Some days, he’s even walking by himself. Yesterday, he was riding a roller coaster no handed and eating pizza by mouth. Yesterday, he was smiling in the car as we played “Single Ladies.” This is also truth. This is life. This is regression. Good moments, bad moments. Holding on, letting go. Celebrating, grieving. Death and life co-exist. I am no expert at grief, but I am a master at anticipating it. And living while you wait for your children to die and dying while your children live — isn’t life to the full. I wake up at 5:20 a.m. scared he’s not breathing, but tell myself not to check. If I don’t check, it won’t be true. So I lay there and pray. Pray it’s not today. Pray my husband sees the rise and the fall of his chest. And pray God will sustain me on the day it no longer rises. Death is supposed to have a birth order rhythm, but it doesn’t. It’s a shifty and unexpected as the wind. See, I want to let you in. But then I tell myself I don’t want you in. I convince myself to hit “save” instead of “publish.” You don’t want to read this, I reason. You want to read happy stuff. This — this pain? It’s too much. My “me too mamas” get it. These are just words to wrap around our bleeding hearts. Or maybe you are trying to understand without actually living it. I love that. Thank you for looking. And then there are some who believe if they don’t read it, it won’t happen. To your child. To your comfortable. Maybe we all are a lot alike. We all want someone else to check for the rise and the fall. But no one is safe from pain. You need to see me strong and smiling. I need to see me strong and smiling. I’m starting to realize maybe you need me to show you both, the darkness and the light. Because you can’t have one without the other. We all have both. We all can be happy and sad. We all can be grateful and envious. Fear and confidence co-exist. We all live in millions of little tensions, don’t we? Which is why life is so damn complicated, yet wonderfully simple. Jayden recently had some teeth removed that were causing him pain. And since then, he has been smiling and laughing and eating more. So have I. As he is dying, he showing me how to live. He’s barely walking now. He is a 10-year old in an 85-year old body. His legs are bent and trembling, fighting just to stand in front of a walker. I am proud. I am sad. He’s getting all his nutrients through the g-tube. A few bites here and there, but mainly g-tube. Today I got mad because even his ability to drink from a straw is failing. I am just not sure who or what to be mad at. His information sheet still says he is a runner. He’s not a runner anymore. Time continues to push us closer to grief as we dig our heels. And there I sat, on the Little Dipper at Great America, holding my son, tears rolling down my face for all to see. I couldn’t get off the ride. It had been a tough morning, an even harder afternoon, and the weight of it all was too much to bear. Just me and Jayden strapped on the roller coaster. As they loaded the cars around us, I wept. I just sat there in the open and wept as people stared. Time stopped. I felt alone, vulnerable, and helpless in the sea of people. Defeated and angry. The teenage girls operating the ride, looking for words to say, found these: “His hair is so blonde.” And I couldn’t even lift my head to thank them. Vulnerability is funny like that. There’s this release. This freedom that comes when you just let the tears come and you give them space. When you stop hiding. Stop pretending. Stop rushing the moment away and actually sit in it and let it run its coarse. Two by two, the seats filled up around us and everyone was strapped in. “All clear? Take five.” And as the coster clicked up the track, I lifted Jayden’s arms with mine and we laughed.

Stefanie Boyce

I Didn't Wear Purple on MPS Awareness Day

Stefanie and her family. I can always tell when it’s MPS Awareness Day because my Facebook feed goes purple. Purple balloons, purple hair extensions, purple shirts, purple profile pictures, purple lemonade stands. It’s a day the MPS (Sanfilippo syndrome) community pauses from our individual struggles and stands in solidarity to announce, remind and remember. Announce there is a terrible thing called MPS and we need a cure for it. Remind one another that we are part of something bigger than ourselves, and we are not alone. And remember all the kids who have passed away and their families that paved the way for ours. It’s a beautiful and important day. So why am I so resistant to participating? I think another MPS mama said it best, “I don’t need an awareness day. I am aware of MPS every day.” I don’t need a purple shirt to remind me; my son waking up in pain at 5 a.m. reminds me. I don’t need Facebook to turn purple to remind me I am not alone; I have women I cry with, who keep me company as we support each other. And I don’t need an awareness day to remind me of the toll MPS takes; I have Facebook to remind me of all the children who “gain their wings.” Their announcements, like an emotional ambush, sit in between a political rant and birth announcement in my news feed. I felt the same way about Rare Disease Day. After seven years, I am done yelling. I am done trying to convince people to look my way as I stand covered in purple. I am tired of convincing people to give to the bottomless pit of “research.” I would rather hide, if I am being completely honest. I don’t want to change my profile picture. I don’t want to beg my friends to wear jeans or purple and then get sad because they forgot or because they don’t own anything purple. Oh, to not own anything purple. I don’t want to identify. I want to cry and pull the covers over my head and make it go away. Maybe my heart is just sad right now. There is no amount of purple awareness that will change what is happening to my kids. And after seven years of fighting, seven years of research, seven years of slapping on a smile covered in purple, nothing has changed. It’s not true, but right now, that’s how I feel. And sometimes we let feelings trump truth, don’t we? And so I ran, purple-less, on MPS Awareness Day. Instead, I wore the Running for Scott shirt to support someone else. I’ll come around, I’m sure, because in the end it’s not about me. In the meantime, I am thankful for all the people who wear purple when I am too tired and sad to wear it myself. Follow this journey on Stefanie’s blog. The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

Stefanie Boyce

How to Talk to Your Toddler About Disabilities

As a parent of two children with special needs and one neurotypical child, I get asked a lot about this topic. And to be honest, even after building our special needs ministry at church and being part of the special needs community for seven years, I’m still learning how to talk to my 3-year-old and her friends about special needs. So, yay! We can navigate it together! Let’s say you are at Target, picking up some milk and body wash, and you find yourself in the woman’s clothing section. (Don’t worry, we all do it.) While you’re browsing the cute sweaters, your toddler says, “Mommy, look at that boy! Why is he so loud?” You look down at your sweet toddler for a second and then scan the aisles. You see him. He seems to have special needs, and you glance away. God forbid his mom sees you looking, or worse, heard your toddler’s observation in her “outdoor” voice. Stefanie’s daughter, Ellie. What do you say? Do you shush your curious toddler and make a mad dash for the soap aisle? Do you say something, and if so, what? Breathe. You are not alone. We all have these moments when we see someone who appears “different” than us and we internally panic for a bit. Here are some “best practices” to have in your parenting toolbox the next time you find yourself in a similar situation. It starts with you. Bad or good, how you react will inform your child’s reaction. (I know you know that, but it’s a good reminder for the both of us, so that one’s free.) 1. Praise your child’s curiosity. It’s a good thing s he’s asking good questions. Don’t shut her down. Be thankful it’s you she’s asking. It’s something she’s curious about and that’s how we all learn. So way to go, kid! She’s paying attention to the world around her. I would simply say, “Good question!” If your child said something that makes you want to crawl under a rock like, “Why is that child drooling?” don’t freak out. You’ve taught your kid to be descriptive and observant. In fact, most kids are pointing out the obvious. We’re the ones making it uncomfortable because we can hear our mothers telling us to be nice. Don’t shame your child. Normalize the conversation. “I bet there’s a really good reason.” 2. Take action. Then I would say, “Let’s go meet him!” Now, that’s assuming his mom is there for milk and body wash and happens to be browsing sweaters as well. (It goes without saying, but I wouldn’t recommend meeting the child unless you think it’s a good time to engage a conversation with a stranger. If not, skip to step 6.) 3. Talk normally. How you would address a stranger is how you would address a person with special needs. Think of it like this. How would you want someone to interact with your neurotypical child? My favorite interactions with strangers have been when they lead with a compliment. “Oh, your shoes are so cute!” “What beautiful eyelashes!” “Look at that hair!” Talk directly to the child and find something to compliment. Smile. Kids smell fear so be as cool and calm as a mom can. I would take my toddler by the hand or hold her, communicating she’s safe, and I would go up to the mom and boy and say, “Hello! My name is Stefanie and this is my daughter, Ellie. We noticed your cool chair (maybe if he was in a wheelchair) and awesome Spider-Man T-shirt. What’s your name?” Notice, I addressed the nonverbal child. I didn’t talk through him or over him, which leads me to my next point. 4. Assume comprehension. Assume they can understand. The parent will speak for the child if necessary. One of the biggest misconceptions when observing a physical limitation is that there’s also a cognitive one. We have no idea what a nonverbal child can understand, so your default should be they understand everything. One child asked if my middle daughter, Brooklyn, could talk. I first thought no, because I was thinking verbally. But Brooklyn can talk, I told them. She communicates with her eyes, her smile and her body language. We just have to be better listeners. And I know she understands a lot more than she can express. 5. Follow up. After we smile and say, “It was nice to meet you, Johnny!” I would typically walk away and wait until we got to the car to have a follow-up conversation with my daughter. However, if the mom seems open and your child is a bit more curious, I would say, “Do you mind telling me a little bit about Johnny?” Or even better, “Johnny, can you tell me a bit about yourself?” Stay away from “What’s wrong?” “What’s his problem?” or “What happened?” And here’s why… 6. See this as a teaching opportunity. What we teach our kids about themselves is how they will see others. If we focus on their abilities, they will judge others in the same way. If we focus on their character and who they’re becoming, they will judge others likewise. In the end, it’s not about special needs, really. It’s about how we treat one another, regardless of what we see. A version of this post originally appeared on Boyce Lane. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.