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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

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

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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

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“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-

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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

Hello world…

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.”

A look back: Where I am, 2 years in

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This post came through my news feed and it is just as true today as it was five years ago when I wrote it. As we adjust to new normals, God’s Word remains true and steady, even if my feelings waiver. 

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November 2011:
October came and went this year with no mention of it being two years since our diagnosis. And, that is just fine with us. As we settle in to this lifestyle, we have learned to really embrace Sanfilippo as a welcomed friend more than an intruder. Let me be very clear. It pains me to see Jayden regressing. It hurts to see Brooklyn still progressing, knowing those skills will soon be a memory. That is my human desire talking. But, I can spend my days counting down till we lose them, or just embrace them while they are here.

And, although we may never have answers this side of heaven as to why God made them this way, we have gotten to a point where we actually see the many blessings hidden in Sanfilippo. Our children’s salvation is secure. They will never be a part of this awful world. They will never hurt someone’s feelings. They will never judge anyone. They never have to work and have a crummy boss. They never will have their heart-broken. They will never complain that they don’t have this or that. They will never think life is unfair. They will never talk back, get in a fight, or cause a car accident. I will never have to worry what they are doing out past curfew, whether or not they are hurting themselves, partying too much, or being fake at school. They will live their life as a blessing-always living in the moment. They will fade away slowly from this earth, only to lean more into their real home-heaven.
Continue reading “A look back: Where I am, 2 years in”