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Uncontainable Light: A mother’s love letter from her daughter’s funeral

Oh, beeba.

Brooklyn, Brook, Brookie, Beebs. Beeba-leebs, Beiber, Leeber, Beezel. Sweet B. B. One name couldn’t contain you, but that’s your story, your light was not meant to be contained.

I can’t believe you’re gone.
I can’t believe I am standing here so soon.

Again.

Actually, I can.
You always did things your way and on your time.

I know you missed your brother, just as much as you loved being with Ellie. Seemed like the day Jayden left, Sanfilippo started in on you. It was a long eight months B, and I know it wasn’t easy. Seizures, GI issues, walking….

I’d like to say you did it all with a smile on your face, but anyone who knows you knows I’d be lying. You did it like I would-honestly. Kicking, screaming, crying, and sarcasm. Lots and lots of sarcasm. Deep down you understood that brokenness hurts and you weren’t afraid to say it, but you also didn’t let it defeat you.

You were a girl who knew what she wanted and I love that about you. It’s why I am less worried about you in heaven, I know you’re settling in just fine. 

I hope someone recorded your arrival so I can see it one day. I bet you ran to Jesus. You probably grabbed Jayden’s hand and lead him all around Heaven that day. And when you got your chance to sit alone with Jesus, I bet you sang to Him your favorite Barney song, “I love you, you love me…” 

I can’t believe we were camping. This whole summer we made memories and I am so grateful for them. I will always find you amongst the trees. 

I can’t believe I was kayaking with you on my lap, and 3 days later you were gone.

Actually, I can.
There was no way you were going to die any differently than you lived. 

I leaned in and listened, B.

Just the way your brother taught me. And you said, “quickly.” So I said, “come.” I let people in, just like you wanted, even though I wanted to keep you as long as I could all to myself, but it’s not your way. 

You were meant to be shared. It was hard not to horde your light, but you almost seemed more radiant the more I shared you with others. Lord knows if you were with your Ms. Vicki, your teacher at Laremont, there was no way I could keep you to myself. 

There were so many people that loved you, Brooklyn.
Your light was magnetic, impossible to contain.

Ever since your were little people were drawn to you. Remember going to the store and listening to women swoon over your “baby doll” face, your perfect curls, and big eyes? People couldn’t get enough of your light. 

Your smile was so big your eyes couldn’t even see it. They would disappear as your squishy cheeks would rise and your smile would take over, many times with your hands clasped up towards your face. 

Your life helped people see Jesus.
It always will.

When I think of you, I can’t help but smile. In fact the last few days, I think I’ve smiled more than cried. Not because I don’t miss your physical presence, but because my joy for you is outweighing my sadness. And just like your brother paved the way with everything else, he has taught me how to find you still.

You bring me great joy, B. Great joy, and lots of physical pain. 

Remember kicking me every time I changed you?
Biting me when I would feed you?
Pinching me when I was doing your hair?
And, you always did it with a smile.

Stinker.

Can we talk about your hair?

It was you. Big and beautiful and terribly difficult to control. 

You hated me touching it. I remember dropping you off with Ms. Liz, or Ms. Heidi, or Ms. Brittany- hair all sort of a mess- and you’d come home with triple french braids. I don’t know how they did it without sitting on you like I did, but I feel like it was yet another way you reminded me that you are my daughter. 

For better or worse B, we are cut from the same cloth. If you would have made it to 16, we would have had major problems. You probably would have moved out to live at Ama’s.

And your feet?

You hated shoes. It was a mean game you’d play every morning when the bus would come. I’d put them on, you’d kick them off. The only shoes that would fit you, that you struggled to kick off were high-tops. And of course, the brighter, the better. Even in the winter you refused to wear the one pair that fit your big-ole feet. Your feet were as wide as they were long. But my favorite thing you did with your feet, besides tucking them under your butt when you sat, was how you made everyone sitting near you your footrest.

My favorite time with you was when you would relax into my lap, the weight of you on me. I knew if I held you, you’d pull away, so I would lean back and wait for you to grab my hand. Even touching you was on your terms. You’d play with my fingers, and I would sing every nursery rhyme I could remember until you’d move away. You’d still bop your head to the beat even when you lost the words to sing along. One time you sat with me so long I started singing the national anthem because I couldn’t think of a nursery rhyme we hadn’t sung.  

Your entire life was a song, B. A medley of beautiful sounds and moments. A song that everyone liked to hear. 

There’s no such thing as normal, B. And, there’s no going back. We are forever changed by you.

The last few months your presence helped us remember J. You both were a package deal. Our lives are completely different with the both of you not physically here.

I feel like your fire, your joy, has crawled into me since you went home. I feel limitless now that you are with me in Spirit, no longer limited to a broken body. You are cured, free, completely restored, with Jayden, with Jesus, and I get to see you again. 

But until then, I am trusting the unseen. I am trusting in the eternal, in the promises that Jesus offers through faith in the saving work of the Cross. Jesus is who He says he is, and the deepest pain of losing you doesn’t change this truth. 

When I was watching your life, knowing since you were 3 months old this day was coming, I realized like everything else about you, a picture couldn’t contain you. It’s why I have more videos of you, than I thought. You were something to be experienced. And everyone that experienced you is forever changed by your light. 

B you are so very loved.
I am so proud of you.

I will look for you in the sun, in my birds.
I will look for you in pictures and stories people will continue to share.
I will look for you in the lives you changed, in the people you’ve touched.

For to see you is to see glimpses of God-His light so bright in you.

B I will spend the rest of my life, finding you. I will take you with me, wherever God takes me, until I see you with my own eyes again. 

I can’t wait.

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Everlasting Joy: A father’s reflections from his daughter’s funeral

Right after Brooklyn passed, a family friend printed off some pictures from when Brooklyn was younger during a season Justin volunteered with One-on-One, a inner-city Zion basketball camp. During camp, I would bring the kids up and they would run around and make friends with all the coaches and players. Jayden would dribble balls and shoot hoops, Brooklyn would dance and sing.

One of the pictures, now a bookmark in Justin’s Bible, is a picture of B wearing a shirt that says, “My heart belongs to Dad.” Sometimes, I find him fighting tears as he looks at it. They sure share a special bond.

I am not sure if this is true of every family, but it feels true for us. There’s just something different about the bond shared between a mother and a son, a father and a daughter. Not better or worse, more or less, just different. A boy needs his mom and a girl needs her dad. (I know both need both, but you get it.)

Maybe it has to do with protection. A dad protects his girl and raises his son to be a protector. A mother protects her son and raises her daughter to be a protector. Maybe it’s simply because Jayden was like his dad, and Brooklyn was a lot like me.

I don’t know why, I just know it was true for us and impacts how we are grieving.

Justin’s words about his sweet B that he shared at her funeral are so precious and the lessons he learned from her are really lessons for us all. Lessons about living life to the fullest, real heroism, love, and joy.

 

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Continue reading “Everlasting Joy: A father’s reflections from his daughter’s funeral”

I can’t believe you’re gone.

I just want to be with you, B.

I can’t believe your gone. It’s a wave of panic that comes over me every time I let myself go there. Go to the place of full acknowledgement, full awareness, fully present to the weight of your physical absence. 

I am trying, B.

Trying to take one grace-filled step after the other. I am making my bed AND feeling sad. I am showing up and doing hard things. When you are newly bereaved, again, even simple things are hard.  

I keep telling people it’s like finally being shot in November after knowing eventually I would become a target, starting the rehabilitation process in a hospital, only to be shot again as I was relearning how to walk. I wasn’t even discharged and sent home.

Days are like walking through mud. Even turning the corners of my mouth up to a smile is heavier. Life is heavier without you.

I thought about these days, even craving them a bit, if I’m really honest. The caregiving was so heavy, heavy and holy, but not nearly as heavy as grief. I realize I just wanted a break, not you gone. I wanted to hit pause, not stop. I just want you back and I am sorry for ever wanting a moment away. Because now, I’d give anything to have you play with my fingers or sing you a song. But I refuse to get trapped in regrets, because I know no matter how much I had of you it would never be enough.  

The house feels empty. Even the silence that once brought comfort in the chaos is now in need of redemption.

Did I mention, I can’t believe you’re gone?

I changed your bed. Did you see?
A twin mattress that doesn’t need sides anymore.
A big girl bed.
A nine year old bed.

Your sister thinks your room is her office because I have turned your playroom into mine. We keep the dutch door of the playroom open now, because you’re not here.

Because I don’t need to keep you safe anymore.
You are eternally safe.

I painted the walls white. Nothing stayed white when you were here. Do you remember all of the dents you and your brother made in the wall? Hundreds. Every one my finger felt this week served as a reminder of where you were that you are no longer.

But I needed reminders that remained.

I kept the now distressed window trim, full of toy hammer dings and a few bite marks. I kept the mysterious blue blotch on the ceiling from some ball- a reminder to look up. A reminder where to find you.

I needed the reminder that nothing is perfect, not even a white room, and plan B is where I am meant to stay.

My desk is the table that held your urn at the funeral.
The same table your brother’s urn sat on nine months ago.

I can’t believe he is gone.
Last year, today, you both were here.
You both got off the bus.
Just. Last. Year.

But the desk? Writing on it is trading ashes for beauty, my small act of redeeming even the darkest of things.

Every decision to change a space or leave it, is hard.
Every space an invitation to remember.
Every space an invitation to move forward with you.
Environments matter desperately to the grieving.

I chose white walls because to me, white is sacred. Holy. Light. All the things you point me towards. I was going to put chairs in the room for people to talk but decided against it. We will continue to gather on the floor like you taught.

“Get low, mom,” I hear you still inviting us.
“Never forget you must begin there each day.”

I knew it was too painful to see the room lifeless so I decided whatever came out of it had to honor the beauty that has already taken place in it. Words and life, tears and laughter, full of you and your brother and everything God continues to teach me.

Share.
Share.
Share.

So I will. My simple, tear-soaked offering to the world, full of light and love.

Keep teaching, B.
I am learning.
Learning it all for the very first time, again.

I can’t believe you’re gone.

 

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Lessons from our little girl: Aunt Angie’s reflections on life, love, and an unexpected calling

To say that we have been blessed by Angie’s love and presence in the life of our family wouldn’t even begin to scratch the surface. If there was one person I’d change my “5” tattoo into a “6” for, it would be her. She has been present for every high and every low we have walked – from baby showers to funerals, from youth group to small group, from hospitals to hotel rooms, from green rooms to stages, from vacations to Tuesdays. Some of my best laughs and ugliest cries have been with her. She has easily become a welcome fixture on our couch and in our hearts and I couldn’t imagine doing this journey without her.

Many times we’ve prayed that Angie would marry and fulfill the desire of her heart to love and be loved in that type of relationship. We still do. But she would be the first to tell you that a person isn’t defined by their relationship status or their work, but by their Savior and by their heart.

Would we have chosen our stories at first glance — Singleness or Special Needs? Nope.

But looking back, I would choose it again and again. I would stand at the front of the line begging to be Jayden’s and Brooklyn’s mom, and I bet I’d find Angie, standing right next to me begging to be Aunt Ah-gee, too.

Many times we think our plans and timing are best, but when we change our focus, we can see that God has been up to something much better, all along.

Ang, you may not have chosen “Aunt Ah-Gee” over marriage if God dangled them both in front of you 12 years ago, but I am so glad He knew better than to give you a choice back then. We both would have missed watching you live out your purpose for the season J and B were physically present. We all would have missed the blessings.

We should talk about this more, shouldn’t we? Friendships, Plan B, singleness, purpose in pain….

Ang, let’s hit the road!

Seriously though, Angie. Justin and I will always pray for God to find a match for you, but we will also pray, no matter what your relationship status is, that you feel loved, that you know you belong, that you live into your purpose and calling — whatever that is in whatever season you are in — and that you know, deeply and profoundly, you matter to us. We feel honored to be sitting in the front seat to your life just as you have sat in ours.

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Here are Angie’s words from Brooklyn’s service:

Continue reading “Lessons from our little girl: Aunt Angie’s reflections on life, love, and an unexpected calling”

What do we do on Monday after the funeral?

I am so tired.
I feel how Jayden looks-smashed and buried.

This weekend, I think I experienced every emotion God made.

First grade doesn’t stop for my youngest just because her sister died. I thought I missed her open house, but it’s tonight. I thought I missed the bus time, but I remembered they post it online. I thought school started today, but it’s tomorrow.

I’m all screwed up, but God knows.

What do we do on these days?
The days after the funeral?
The days when everyone else seems to move forward and we are left picking up the pieces of our shattered life?

What do we do when the cards and casseroles stop?
When people stop saying her name? His name?
How do we answer, “How many kids do you have?”
Continue reading “What do we do on Monday after the funeral?”

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:

Continue reading “Jayden’s Service Part 3: A Mother’s Love Letter”

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:

Continue reading “Jayden’s Service Part 2: A Father’s Love”

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:

Continue reading “Jayden’s Service Part 1: Samuel’s Impact Story”

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.

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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.

Continue reading “Gray”

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

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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-

…..

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.

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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.

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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.

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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?!

 

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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.

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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.”