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Blue Jays and Laundry: What Grief Looks Like One Month After My Son Went to Heaven

“This is what the things can teach us:
to fall, patiently to trust our heaviness.
Even a bird has to do that before he can fly.”

-Rainer Maria Rilke-

One month.

One month since Jayden has been gone.
One month closer to seeing him again.

My mind is just now beginning to clear, or maybe it’s returning to fog. I am still not sure which is more foggy, the months before and after a crisis, or the days lived in between life’s defining moments. I think it’s the latter, because every decision surrounding Jayden’s passing was so clear to me.

Continue reading “Blue Jays and Laundry: What Grief Looks Like One Month After My Son Went to Heaven”

Jayden’s Service Part 3: A Mother’s Love Letter

Thank you to all of you that came to the funeral service and for helping us remember Jayden’s influence this Thanksgiving by posting what your are thankful for using #JBThankful. We are so blessed by our community and tribe, and everyday, we find out how far reaching Jayden’s influence continues to be.

Here are my words from Jayden’s funeral:

Sweet Boy.

I miss you already.

Except the diapers. I don’t miss those. But I would take a year more of diaper changes if I could somehow touch you again. But even one touch more would never be enough. We weren’t created for it, Jayden, this separation. That’s why I hurt.

But I hurt with hope. Hope that Jesus is who He says He is, Jay. Because it’s true, I know you are free. Free right now in the presence of Jesus and there is nowhere else I want you to be.

And, you are cured. Your beautiful soul isn’t trapped in a broken body anymore, but in a perfect one. One that can shoot hoops and run, dig and jump, talk and sing.

And that’s way better than snuggling with your mom.

But man, I loved touching you. I didn’t know where you started and I ended. Remember when you were younger? I didn’t even hold your hand, I held your wrist. You were so quick, I needed a good grip so you didn’t run off. When you got older, you would walk circles around me as I would switch between hands. The past few months, I walked with my body right up against yours, behind you steadying your steps. I liked you close. But no matter how old you got Jay, you always let me hold your hand and play with your hair. I wish you would have taught Beeba to do the same before you left, touch her hair, that is.

…..

For the past 11 years, I have taken your picture. That’s the beauty of knowing this day would come. Every click I told myself, “I want to remember.” Every picture a potential candidate for today.

Your daddy loved playing with you, and I loved to capture it.

Your sisters loved cuddling with you, and I loved to capture it.

But when you smiled, Jay, you were smiling at me.

It was hard making your slideshow this week, seeing your face and all. Made me miss you even more. You smile with your eyes. Did you know that? I noticed a few things as I was sifting through the thousands of pictures I took. There are three types of pictures of you and I: you smiling at me, our selfies, and us dancing.

I loved dancing with you, Jayden, and thankfully, your daddy captured it. Remember turning on Frank Sinatra and spinning in the dining room or under the lights on the back porch this past summer? And man, we had the best summer. Even last week we were still dancing together. You always knew how to sway to the beat.

…..

I’ve been crying quite a bit this week, Jay. I miss you holding my tears. You always did hold my tears. I would find you laying in the playroom, with your head just inches on the pillow, your body sprawled out on the floor watching Bob the Builder or Blues Clues. Lately, it’s been Dude Perfect because I learned from your good friend Reid, that’s what boys your age watch.

Anyway, I would take your arm and wrap it around my neck and you let me cry. Most of the time, the tears would be broken by Brooklyn trying to step or sit on us. We all would laugh. She always wanted to be close to you. Violently close.

You sure were lucky to have two amazing sisters. Brooklyn and Ellie were crazy about you, they still are. Ellie is drawing pictures, like she did last week, that say “I love you so much JJ.” There’s even a few of you in heaven. Brooklyn is in the playroom hitting your picture and taking good care of robot. She knows. She knows way more than we even know.

We already feel your absence in the house, especially in the mornings.

How’s your new room? Probably so cool. I’m still struggling to go in your room here. We’ve been keeping the door closed this week, but every morning we see the sun bursting through the cracks into the dark hall. We will open it again, just not now.

Maybe that’s where I’ll cry from now on.

…..

I had to share you a lot, Jay. Between daddy and your sisters, Ms. Jen and Ama, and the countless others your life seemed to touch. It made me happy to share. To watch you live out your purpose as you shaped every life that took the time to be with you. I’m not quite sure even how you did what you did in the hearts of so many without words, but maybe that was your secret. Maybe we all use too many words.

You offered the world your time. Your hand. Your presence. Your love had no limits.

You taught me the things in life that are really important. I think at this point, you and I would agree, we never would have chosen Sanfilippo, but it was because of it, you were who you were, and able to do what you were put here to do. As your body continued to break, your soul and Christ’s light shining through you, got all the brighter. The more cracks, the more light. In fact, I think we’d agree we never would have changed it, now knowing what we know. Now that your insides and outsides match.

…..

I loved when the world would stop and it would be just you and me. Most of the time, that was when you were at the hospital or home from school. I loved being with you in those moments, I came alive when all I had to do is take care of you. These moments were sacred and holy and all mine. I could hoard all your light for myself. Like this past week on our walk through the forest preserve, your body all warm and your face chilly from the crisp autumn air. I still have the acorn you held from our walk.

…..

Are you eating up there? You always were a good eater, until this past year. Fruit snacks, chicken nuggets, dirt…you ate it all. Does Jesus give you popsicles at 7 am like Ama always did?

How about sleeping? Are you sleeping well? Wouldn’t surprise me if you weren’t sleeping. You never did. Except the last few weeks when I slept with you.

It was so nice seeing your body finally sleep.

How’s the music? Probably way better than my singing. I always did like singing to you, though. Wheels on the bus was a personal favorite of ours. You don’t remember this, but the first thing I did when you got here, when we were alone, was sing to you. Remember our songs? “Here I am to worship” and “I love you Lord.” You made me worship. I remember singing to you many nights as you screamed, Sanfilippo robbing you of sleep. Or the nights of twitching and uncontrolled movements when Sanfilippo wouldn’t let your body rest.

It was so nice last week seeing your body finally rest.

I hope someone is tucking you in like we did. Daddy would finish reading you books, we all would climb in your bed to pray and sing, “Oh, the Lord’s been good to me,” but we changed the words from “the sun, and the rain, and the appleseeds” to “Jayden, and Brooklyn and Ellie.” Ellie said she wanted to sing it for you today so we will see. She’s pretty courageous herself.

…..

It’s good Jay, right? Good up there? Where there’s no more death, or pain, or sorrow?

I thought so. I can’t wait to see.

The last week of your life, my womb hurt. Birth and death, death and rebirth. It’s all so painfully beautiful. Rhythmic, even.

I leaned in and listened, Jayden.

Listened to what felt right.

And it felt right.

It has all felt right.

I wrote “5 family forever” on your wrist, so you never forget that’s what we will always be.

We will always remember you.

We will always be “5 family.”

I’m not sure if you can hear me or not, perhaps talking to you is a bit irrational,

-like being comforted knowing that Granny B was with you your first night away. It helped your dad and I sleep better knowing you weren’t alone.

-or like wanting to put socks on you so your feet wouldn’t be cold when dad carried you out of your bedroom for the last time.

But even if you can’t hear me, even if talking to you is completely irrational, I think it’s still ok to try.

Because I just wanted you to know, one more time, you are brave and courageous. You are the best son a mom could ever ask for. You are gentle and kind, and other than your dad, I can’t think of a person that reminds me so much of Jesus.

I will always remember you, my sweet boy. God knows I have enough pictures to help me.

But every milestone that passes without you, I will grieve. Grieve with hope. Hope that Jesus is who He says He is, and will do what He promised to do.

I am honored to be your mother. I always will be. I am so proud of you.

Well done, Jayden. Well done.

’Til we talk again?

 

 

Love you,

Mom

Jayden’s Service Part 2: A Father’s Love

Dads, get out your notebook. Study his ways. Justin is worthy of being emulated. He is one of the best dads around. Selfless, affectionate, and willing to change diapers with his rough, callous hands from doing man’s work outdoors, providing for our family. He is equally gentle as he is strong. Listening to him talk about Jayden on Saturday was awe inspiring. I am so proud of him and the way he seeks to bring glory to Jesus in all he does.

Jayden loved “my dad” fiercely. This picture was taken days before he passed. Justin had stopped in from work for a few minutes, and received one of the greatest gifts, one of Jayden’s last smiles.

Perfection.

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Here are his words from Saturday:

When we found out that Stefanie was pregnant with Jayden, my dreaming began. I was going to live out all my failed dreams through him. I wanted him to become a basketball star. So we started young. As soon as he was able, I was putting a basketball in his hands. When he started walking, I introduced him to dribbling. It was extremely odd, but he caught on to dribbling really quickly and easily. Before you knew it, he was able to alternate hands while dribbling without even looking at the ball. Then we started to work on shooting. I went out and bought a little tikes basketball hoop and the training began. I taught him proper form and to always follow through with his shot. At one point he could make 9/10 from my modified free throw line. This was going to be good. I was going to sit in the bleachers and be so proud of my son.

Jayden was all boy. He loved to dig holes. If you gave him a shovel, there would be a hole in minutes. He would dig holes in every place that I didn’t want him to. I would grab a shovel too and we would dig holes together. Every time, he would come over and look at my hole and then proceed to jump down into it and laugh. We would cover the holes back up and go look for new places to dig.  

Jayden also loved trucks. I would come home from work and walk into the house and stretch out my arms wide and wait for his embrace. He would come running towards me and fake me out with some kind of football move and head outside right to the truck. We would then sit in the truck and I would watch him pretend to drive and honk the horn. We also had a Dodge Neon. I’ve never known anyone who loved a Neon like Jayden did. It became his favorite word to say.  He would run around the house saying “my neon, my neon” in the sweetest nasally voice you could imagine. He would climb the bumper up to the hood over the windshield and rest on the roof of the car smiling, while saying his favorite new word.  

On Friday nights in the summer I played on a church league softball team. Stef and Jay would come to watch me play. Every time I stepped up to the plate to bat, I would hear Jayden yell from the stands “my dad, my dad”. I couldn’t help but smile. He was proud of his dad. Little did I know at that point how much more proud I would become of him. Shortly after the season ended, we learned that Jayden and his infant sister Brooklyn were diagnosed with a rare genetic disorder called Sanfilippo Syndrome. Because of its regressive nature, I had to start dreaming new dreams for my son.

Our family and friends decided that we needed to have a new house that could be customized to fit Jayden and Brooklyn’s needs. Fundraisers started happening left and right. We did silent auctions, chili cook-offs, garage sales, pledge drives, 5ks, and even colored our hair purple. We even jumped out of a plane and skydived to raise money. Stefanie spent hours drawing out plans for this house. It would be perfect for them. The kitchen was our biggest concern. In our old home, Jayden would find the knife drawer often and accidentally turn the gas on to the stove. The only way to enter this new kitchen was through a child gate. Problem solved. The next day, I watched Jayden drag a chair over to the bar height countertop. Like a ninja he would easily scale over the counter and into the center of the kitchen. We just moved the knives above the fridge. We also knew that we had to have a fence built around the entire perimeter of the house.  

A year before, I was busy doing something and turned my back on Jayden which seemed like only a minute or two, but he was gone. I went racing down the street calling his name. I ran to a neighbor’s house that had a Lake County Sheriff’s car sitting in the driveway. This was the right house. Turns out our neighbors were having a birthday party and Jayden wanted to celebrate with them. Luckily, the officer gave Jayden a police badge sticker and sent us home. We definitely need a fence. After it was installed, Jayden would walk the perimeter of the fence line everyday. We called him our security guard. No one came in or out of our yard without him knowing it. We felt safe when Jayden was on duty. We learned that there was a bright shining light in Jayden and there was nothing we could do to stop his light from shining. No gate, fence, or lock could contain it.  

Somewhere in the middle of our house build, we realized that the room we designated as a guest bedroom would now become a fourth bedroom. We were so crazy about Jayden and Brooklyn that is seemed right to add to our family for a third time. Except this time, we had to surrender all completely to Christ. Not knowing if our third child would have Sanfilippo or not, we leaned into the love that Jayden and Brooklyn gave us and trusted that we would receive exactly what God had planned. We introduced Elliotte to Jayden and Brooklyn and they quickly showed her unconditional love, followed by a few bumps and bruises. Elliotte’s love for her brother started early and only increased as she spent more time with him. At such a young age, she too saw the light in Jayden that was so compelling she couldn’t resist it.

The light crept into our church too. High school students from our youth group started flocking to our house to be with our family. College students changed their majors. People were coming to Christ and they felt closer to Jesus when around him. It became apparent that Jayden and his sister needed a bigger room at the church to spread their love. So after attending a few conferences and reading a couple of books, Stefanie quickly created a special needs classroom for Jayden and his friends, called Oasis. It became a sanctuary for parents of special needs children. They could actually drop off their children and enjoy a church service for the first time. 

I couldn’t help but feel closer to Jesus when I was around Jayden. It became very addicting.  The more I fell in love with my son, the more I fell in love with Jesus. There was this unbreakable bond between them and I got a front row seat to watch it. Jayden was teaching me that this life is temporary and that there was something so much better waiting for us. But you have to choose to see it. Jayden became my daily reminder that this world is not my home. And my heart started to long for heaven.  

As the years went on, the disorder began to catch up with his body. Everything began to slow down. Jayden couldn’t run as fast or climb as well. He couldn’t dribble a basketball as well either, but he could still do it. Becoming a basketball star was a distant memory now. God had much bigger plans for him than that. I couldn’t see that at the beginning, but it was very evident now. He was changing my life and the people that were a part of his. That was so much bigger and better than being a great basketball player.  

Love became the thread that was woven through his story. He loved everybody he met and his smile always matched what his heart felt. I loved that about him. I wanted to love people the way that Jayden did. The way that Jesus did. Jayden prompted me to travel to Haiti to help bring fresh water to children who were dying from water-borne diseases. If I couldn’t save my own children, then at least I could help prevent other parents from losing theirs.  

In the last months of Jayden’s life, he still smiled a lot. Despite what was happening to his brain and his body, he still laughed a lot. He still had the desire to dribble a basketball too. I would dribble the ball close to his hand and he would move his hand up and down with the motion of the ball. He fought bravely and loved fiercely. When Jesus finally called Jayden home early Monday morning, Stefanie and I had the honor to lay next to him and usher him into eternity. I could hear Jesus saying, “well done, my child.” I couldn’t be more proud of my son. I learned more from the short 11 years that I spent with Jayden than I could ever have dreamed of. Jesus became more real to me than ever before. Heaven’s tug on my heart is stronger than ever. I can’t wait for the day I get to see my Savior and my son. I can’t help but stand in awe of my Lord, my God.  

Jayden’s Service Part 1: Samuel’s Impact Story

Dual blessing. 

It’s what I call our relationship with Sam. I will never forget meeting him on a youth retreat his Sophomore year of high school. He actually came with a different church youth group but ended up in my small group. I am not one for stealing kids from other youth groups, but technically he didn’t have a church youth group home so I didn’t feel that bad. I liked him. He was just a pretty cool kid and he got along with all my other misfit teenage boys.

He just fit.

He joined Impact, our youth group, where he used his gift of music and led worship. Right away he joined our small group that met during the week, so we became real close to Sam, seeing him twice a week.

But everything changed the day he called. There were things we just had no idea he was carrying. His call changed everything. Sam’s family and our family would journey to some very dark and heavy places behind closed doors over the next few years. And Sam went from being a kid in youth group we enjoyed, to family.

My office and my couch became a refuge for him. My son became his hero. Without using words, Jayden would change his life. Jesus used my son’s presence in Sam’s life to save it. And let’s be clear, it was Jesus that did the saving.

Sam is such a brave, talented, wise young man. He is already influencing his campus at Purdue with the love of Christ. He is making his journey back to an authentic, thriving, beautiful communion with his Savior, and I am so thankful Jayden played a part in his story.

We asked him weeks ago, before we really knew Jayden was going to pass, if he would share at his funeral and he agreed. Thank you, Sam, for not only sharing your words so powerfully, but for the honor it has been to be a part of your journey. Dual blessing for sure.


Here are his brave words from that day:

 

I first met Jayden and the Boyce family at Impact, Immanuel Church’s youth group, at the beginning of high school. Jesus brought the Boyce family into my life at a critical time, where for the first time, I was able to talk about the pain and hurts of my own story. The Boyces courageously, selflessly, and lovingly walked through some of the darkest, most painful days of my journey right alongside of me.

For a while, Jayden didn’t quite make sense to me. How could someone physically broken, given such a seemingly unfair hand in life, be so joyful, loving, and peaceful? I was bitter, sad, and angry with the hand I had been dealt and the pain I had endured. In Jayden’s journey, he, if anyone, had the right to be sad, angry, or selfish. But instead, the opposite was true. As his story unfolded, he seemed to become even more overflowing with the gentle love and peace of Jesus.

Throughout my time with Jayden, the reality of the brokenness of this world, and the immense suffering in it, was always there. But even more overwhelmingly present than that was this insurmountable peace, love, and joy that Jayden radiated through his smile and laughs. I’d look at him and think, “Here is a little boy who has every reason in the world to be resentful because of the brokenness God has allowed in his life, yet I’ve never felt closer to Jesus than when I am sitting next to him.” His story didn’t have a day without pain or brokenness, and did he respond?

He responded with a gentle, loving, peaceful smile that transcended all fears, hurts, and resentments, filling me with the love and peace of Jesus.

I spent many nights on the Boyce’s couch, wrestling and lamenting with the pains and hurts of my story, selfishly yelling out “Why me, God?” “Why this story? Why this pain, God?!” And in these times, Jut and Stef would get in my face and look me right in the eyes and say, “It’s not about you, Sam, it’s about Jesus.” And then Jayden’s giggles and laughs would echo from the playroom. “It’s not about your hurts, Sam. It’s not about our pain, or Jayden’s, or Brooklyn’s hurts. It’s about Jesus.” 

Now, if this little boy, crippled by his own broken body, can be filled with the love and joy of Jesus amidst his suffering, then what on earth am I doing sitting on the Boyce’s couch feeling sorry for myself, asking “Why me, God?”

And it was there, with Jayden and the Boyces where I began to understand that our stories are so much bigger than ourselves and it isn’t our job to ask “Why, God?” That is something I am still learning today, and quite frankly, I wouldn’t think is possible if I didn’t have the privilege watch the Boyces get up every morning and faithfully live that out in everything they do. 

The more time I spent with Jayden, the more the broken parts of his story seemed to fade, and this unexplainable hope and triumph took over. How amazing. A seemingly broken, sad story of impending death, turned on its head, from death to victory. From the brokenness of a little boy to a warrior of Jesus, radically changing the lives of everyone around him. How breathtakingly amazing is that? To see a story that the devil intended for evil through a terminal illness of a child, be magnificently transformed into a life-changing, Jesus-proclaiming story of love, resilience, unimaginable hurt and faith, reaching thousands of lives, including mine. 

The most impactful memory of Jayden and what really made me realize Jesus’s power in Jayden was the first time I ever shared my story. I was sitting on the Boyce’s couch, trembling and beaten down from the brokenness of my story when Jayden, who at that time was dribbling a basketball, came and sat down next to me and looked me in the eyes. In that moment, all fear, hurt, guilt, and sadness was replaced with the peace, gentleness, and love of my Heavenly Father that radiated out of Jayden like the brightest lighthouse in the darkest and scariest of storms. Here was this little boy, physically broken and degrading every day, being Jesus’s powerful, life changing ambassador, encouraging a life full of brokenness and hurts, turning it upside down, and filling it with grace and love unmatched by anything I had ever felt before.

When Justin and Stefanie asked me to speak, I was overwhelmed with the task of speaking to one of the many stories that Jayden has impacted forever. I consider it a divine intervention of Jesus that Jayden and the Boyces were put in my life because of their magnificent walk with Jesus, on display for all so see and be blessed by.

Jayden’s life and legacy teaches me to long for heaven, reminding me of how faint and worthless the glories of this world are. The people Jayden loved made Him smile. Not stuff. Not shallow admiration. Not money, but people. How quickly the things of this world fade when you enter in the presence of someone so close to God’s very heart.

So thank you, Jayden, for loving me unconditionally. Thank you for showing me, time and time again, what it looks like to suffer faithfully, gracefully, and selflessly. Thank you for teaching me to own my story, because I know you didn’t choose your story, but Jesus did, and you didn’t spend your time here bitter and selfish, but instead chose to love on broken people like me, changing the course of my life forever. You have set the bar high for living a faithful, selfless life, committed to loving people, despite the brokenness you experienced. Thank you for setting the example, for running your race with endurance and grace. I love you so much and look forward to the day when we stand shoulder to shoulder with our Heavenly Father. 

Gray

Gray. It’s my favorite color, but not when it comes to knowing. When it comes to knowing, I want answers. I want to know when. I want black or white.

But dying, like living, is full of gray.

…..

As I type, just got an email notification from the middle school Jayden would have been attending if he didn’t have Sanfilippo. It was a reminder about the school dance tonight.

As I type, I listen to the rhythm of his breath. In the background, Mickey Mouse Clubhouse plays.

 

I can’t believe it’s snowing.

I can’t believe it’s November.

I can’t believe my son is dying.

 

What we have anticipated since 2009 is here.

…..

The hospice nurse stopped by to check Jayden and told us because it’s his brain that is failing, no one knows how much time he has left. Lungs are clear. Heart is strong. Still tolerating his feeds. Only Jesus and Jayden know and it is our job to listen.

He is sleeping a lot today because we started meds for pain. I miss the laughter and smiles this morning, but I love the peace it brings to his restless body. He is calm.

Last night, Justin had him cradled in his legs sitting in the trampoline. Jayden smiled.

Earlier, he was tickling Jayden on his face with his beard. Jayden smiled.

Justin is such a great dad. Serious comes easy for me, I have to work harder at having fun. Justin is fun. I love that we balance one another out. In fact, we are stronger than ever. And today, like many of our days lately, we are on the same page. We feel honored to be Jayden’s parents. It’s easy loving him, what’s hard is letting him go.

…..

The end of life process is equally difficult as beautiful, I am finding out. God is being patient and gentle with our hearts. He is answering every prayer we have prayed for this time. He is meeting us in every decision, every moment.

The peace in the home is sustaining me. I have candles burning, soft music playing, and chocolate donuts staring at me. The lights are off, the sun giving us most of our light. My countertops are clean. The laundry machine is going. It is calm. I can focus. My mind is clear. I still have an anxious heart, to be expected, but God’s peace is greater.

We are ready for casseroles, but not quite ready for visitors. We feel bad for keeping many of you in the wings, but we have to do what feels right, and creating a sacred space in our home right now feels right. Please know we feel and need your love very much. Your prayers and texts are sustaining us as well as the meals that are being dropped off. Kate and Kat set up a link to sign up if you would like to bless our family in this very special way.

…..

I am glad my favorite color is gray, because you know what it means?

More. More unknown. More trust. More love. More time.

More time.

And I will take all the time I can get.

What Feels Right

I walked Ellie to the bus stop this morning.

It was 47 degrees. Cloudy. With just enough warm left in the air to make the crisp, cold air inviting. I have really enjoyed the fresh air everyday the walk brings. I find myself craving it. It’s good for my soul.

I held her tiny hand in mine. She told me she’s the “chair helper” at school. If a kid forgets to push in their chair, she pushes it in for them. She’s really enjoying kindergarten. The sounds of spelling, singing about her colors, counting, reading, and playing school has become our soundtrack to this season.

It has felt right.

Continue reading “What Feels Right”

I see you, mama: A word for mothers navigating a different dream

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Sunday, April 23, 2017, I had the honor of keynoting the annual Charles Tillman Foundation’s TendHER Heart Luncheon. This spring 250 mothers of critically and chronically ill children attended a special brunch, which honored them for the sacrifices they make in caring for their ill child. The brunch provided these women with the opportunity to “take a minute” for themselves and enjoy each other’s company and support. 

Here are my words from the luncheon.

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Continue reading “I see you, mama: A word for mothers navigating a different dream”

Me and She in Haiti

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There She is.

Me and She. I didn’t know until I left Haiti the first time, She was the reason I went. And She, is one reason I am going back.

Haiti is no joke. It was hard. And bringing an extremely large group of high schoolers there for a mission trip was a challenge. It was hard to lead students while I was experiencing and processing everything they were for the first time. The blind leading the blind, so to speak. Although I think I was learning more from them, then they learned from me.

Continue reading “Me and She in Haiti”

Field Notes from Pain: Part Two

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This is part two in a two-part series entitled: Field Notes from Pain

…..

“Sometimes God allows what he hates to accomplish what he loves.” 
― Max Lucado-

…..

There was this youth group kid that whittled. You know, the art of taking a piece of wood and turning it into a troll or something. He did that. And he was good. I was fascinated- first, that a high school boy liked to whittle. Random. Then, I was fascinated by his work. He had an entire village of what I imagined to be Wemmicks.  Continue reading “Field Notes from Pain: Part Two”

Field Notes from Pain: Part One

This is part one in a two-part series entitled: Field Notes from Pain

…..

“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.

Jayden and Brooklyn are fine, not sleeping, but fine. As fine as two dying kids can be. In fact, most days, I fear they are doing a better job of living than me. Justin says I am too hard on myself. Perhaps. Ellie is great, too. Still asking a bunch of questions like most four-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.”

Everyday. Continue reading “Field Notes from Pain: Part One”

Character Over Coloring: A Lesson On What Really Matters

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Can I tell you guys a quick story?

A few days ago, I walked into Ellie’s preschool to pick her up and saw these scarecrows on the wall. Each child was given a plate and told to make a face on it. They were great. The kids had drawn two eyes, clean lined mouths, and button noses. Pretty impressive for four, until I noticed Ellie’s. Her plate was covered in random purple, gray and pink scribbles.

Continue reading “Character Over Coloring: A Lesson On What Really Matters”

How One Woman is Embracing Plan B After Her Son’s Tragic Accident: A Guest Feature by Kristen Clack

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Hold onto your seats, friends, and grab the tissue. I can’t wait for you to meet my friend Kristen. Her story is remarkable. But what is even more remarkable is her faith in the midst of her circumstances. She has such a contagious joy that can only be understood in the context of her Savior, Jesus.

What if your worst nightmare came true? Could you praise God in the midst? Kristen’s faith is a challenge to us all. Thank you so much, Kristen for sharing your story of going from Type A to Plan B with such grace and joy.

 

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Continue reading “How One Woman is Embracing Plan B After Her Son’s Tragic Accident: A Guest Feature by Kristen Clack”

It’s Never Too Late to Find Freedom From a Shameful Past: A Guest Feature By Dawn Stewart

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So…. I can’t wait to introduce you to my new friend, Dawn! You know when your heart is whispering something, and then you meet someone else who says their heart is whispering the SAME thing? That’s what happened! Dawn and I connected through a mutual friend and when she began to share about the beauty in brokenness, trying to keep up, and unlocking the truth– I knew our souls were connecting, and we all would learn so much from the story God is writing in Dawn. So lucky for us, when I asked her to share, she said YES!

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Continue reading “It’s Never Too Late to Find Freedom From a Shameful Past: A Guest Feature By Dawn Stewart”

Confessions As I Anticipate Grief: Part 4

This is the fourth post of a four part series: Confessions As I Anticipate Grief. 

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“As long as the people don’t fear the truth, there is hope. For once they fear it, the one who tells it doesn’t stand a chance. And today, truth is still beautiful… but so frightening.”

-Alice Walker-

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I don’t want to admit this, but I feel alone sometimes. In the sea of people in my home everyday, I feel alone. Not right now, because I am writing this alone, but when I am with people I feel alone. And knowing I can’t do it alone makes me feel like a failure. I know I am not, but I feel like I am. We can’t let feelings trump truth, can we? The truth is, I sound like a four year old when I say, “I can do it all by myself.”

Continue reading “Confessions As I Anticipate Grief: Part 4”

Confessions as I Anticipate Grief: part 3

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This piece is part three of a series of blog posts entitled, Confessions as I Anticipate Grief. You can check out part one or part two here.

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“Just going to church doesn’t make you a Christian any more than standing in your garage makes you a car.”

-GK Chesterton-

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I want to tell you I haven’t attended church much after I left my job there back in January. But that will make some of you nervous. It made me nervous. That is until I discovered why. I needed time to breathe. And now, my soul has never been more alive. There’s no scandal; no drama. I just spent nine years working at a church, trying to make it better for everyone else and lost myself in the process. As I created environments, experiences, and conversations that brought people closer to God, I forgot to participate.

We all can get lost in our jobs and forget why we are doing it, can’t we?

Continue reading “Confessions as I Anticipate Grief: part 3”

Confessions As I Anticipate Grief: part 2

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Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.

I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.

This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.

WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?

My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words.  Continue reading “Confessions As I Anticipate Grief: part 2”

Confessions as I anticipate grief: part 1

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Confessions as I Anticipate Grief is a series of posts I will be releasing on StefanieBoyce.com. This is part one.

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“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

 

Continue reading “Confessions as I anticipate grief: part 1”

Blessings from the most unlikely person

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You guys know Stephanie, right? No, not me-her. She joined our village a year ago. I’ll never forget her first day. Our palliative/hospice organization notified us they had found us a volunteer. And when Stephanie showed up with a water bottle, a sitting pillow, and a change of shoes, I thought they had sent this poor lady to the wrong house. There was no way this sweet, petite, grandma would keep up with our kinda crazy.

Continue reading “Blessings from the most unlikely person”

Why Christians Need to Stop Saying “Everything Happens for a Reason”: A Guest Feature by Christine Suhan

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Ever been told “everything happens for a reason?” I have. People tell me that, and God never gives you more than you can handle, every day. So when I stumbled on this article on FAITH IT, I knew I needed to reach out to Christine and see if I could repost it here for you because it’s a MUST READ. She has an amazing story and I highly suggest spending some time checking her out!

Thanks Christine!

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Continue reading “Why Christians Need to Stop Saying “Everything Happens for a Reason”: A Guest Feature by Christine Suhan”

How to talk to your toddler about special needs

A version of this post was published on TheMighty.com

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As a parent of two children with special needs, and one typically developing 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 7 years, I am still learning how to talk to my 3 year old and her friends about special needs. So, yay! We can navigate it together!

How to fail at staying home with your kids

School breaks always remind me why I hate my life.

When everyone sees them as an opportunity to bond with their children, I see it as entrapment. When everyone else gets to do fun Pinterest crafts or explore “25 family friendly places to visit on break,” I feel like I got a week long prison sentence.

All I choose to see is more mess, less patience, and no fun.

I mean, I wish we could do something fun. At least more fun than hours and hours of Barney. I would love to do crafts, or go somewhere, but I can’t. I can’t take my 3 kids anywhere alone.

Continue reading “How to fail at staying home with your kids”

Proud Mama

We’ve been here before.
It’s an all too familiar place.
It just didn’t happen so quickly the last time.
Regression.
The death sentence of Sanfilippo.
The last six months have been rough for Brooklyn.
The last six months have been difficult to watch for everyone that loves her.

Continue reading “Proud Mama”

Tension

I wonder how long it has been since I stopped. 
Stopped long enough to really spend time with a children’s book.
Stopped to play with play doh.
Stopped to really look at my child.
Until Monday morning.
Mondays have turned into my favorite day. The best start to my week is slow.  I get to sit in my pj’s and cuddle with Ellie.  Most of the time it is for a few minutes during Fresh Beat Band. Then I get up and start. Manage the calendar. Start the Laundry. Grocery shop. On a good day, I run.

Continue reading “Tension”

buried dreams

Five years into Sanfilippo, the reality of “no treatment or no cure” has become a safe place for us.  We aren’t scared of this world anymore.

Holland, is home.
We gathered our worldly dreams for Jayden and Brooklyn and mentally buried them 6ft. under.

Continue reading “buried dreams”

OASIS-Special Needs/Inclusion Ministry at Immanuel Church

It’s official! 
Our doors and hearts are open and ready to include children and love families touched by disability at Immanuel Church!


I am so thrilled to see another dream become a reality.  It really is a dual blessing-our children, and the story God is writing through us, has forever changed our church family, and they have forever changed us. 
Continue reading “OASIS-Special Needs/Inclusion Ministry at Immanuel Church”

My Birthday Breakdown

 

Because of the nature of my job, Justin never gets to go on overnight retreats with our high schoolers.  I am in charge of all the details from booking, to schedules, permission slips, etc….except for our fall retreat. Fall retreat is with a number of other area churches and I don’t have a lot to do with the actual weekend so the option was open for Justin, instead of me, to go. So, with my blessing, he went but that meant all three kids, all weekend for me. Stubborn as I am, I really wanted to do this whole weekend with no help. I mean, I am their mom, how hard could this be?!

 

Continue reading “My Birthday Breakdown”

A parent’s perspective on going to church

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I have been MIA on my blog…story of 2012. Not because I have nothing to say, but because I never have the time to say it.  I have been avoiding writing because I am holding out thinking I am going to catch up.  The last post was from August.  Since then, we have moved into our new home and time continues to push us into the next month.  I wanted to get pictures up of September-January before I started writing in real time again but two computer crashes later…I haven’t. Oh well, right?!

2013 has been a good year so far. I think a theme in my life these last two months has been, “what now?” “The house is complete, God what do you want to do with our story, our life?”  I catch myself thinking about my life mission.  “God, what have you called me to do? Where do I invest my energy and time beyond the never-ending task of motherhood and housekeeping?”  I miss the diagnosis days. I miss being overwhelmed with passion to write.  Desperate for the Lord to meet me in every moment and every day.  I don’t want to have the pain and sadness, but I want the peace that surpasses all understanding that came out of it.

Continue reading “A parent’s perspective on going to church”

June 14, 2012: Elliotte doesn’t have Sanfilippo

It is with mixed emotions that I write this blog. On one hand, I am overjoyed that my daughter, Elliotte, doesn’t have Sanfilippo. On the other hand, it illuminates Sanfilippo in Jayden and Brooklyn and deeply grieves me in new, fresh ways.

Continue reading “June 14, 2012: Elliotte doesn’t have Sanfilippo”

Journey to trusting God, for real….

Speaking of being open to special needs….

Justin and I have been on a journey since we began having children. We used to talk about how many kids we wanted, did we want boys, girls, or a combo… We never discussed having special needs, but did make passing comments once in a while that we would be perfect candidates for the job because of our faith, family, and network of support…. Little did we know…

Continue reading “Journey to trusting God, for real….”

The beginning.

Posted October 06, 2009

Hello!
I wanted to give everyone an upate on Jayden.

We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden’s liver was enlarged. He bagan to be concerned about if all these “unrelated” things would add up to a genetic disorder and, after today we think he is right.

Continue reading “The beginning.”