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”

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 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”

Sometimes, we just need our mom.

Jayden barfed yesterday.

Actually, from both ends. When I went in to wake him up for  school he was sleeping in it. Poor guy. Justin picked him up and I aired out his room while he continued to sleep on the bathroom floor.

Continue reading “Sometimes, we just need our mom.”

What life looks like after losing a baby: A guest feature by Michelle Jenison

 

 

Mother’s day is in a few days.
And when I think of Mother’s Day, my first thought is Hallmark. You know…
The card.
The gift.
The Sunday-after-church brunch where you tell your mother how much you love her.
And, that is wonderful. It ’s the way it’s supposed to be. Mom’s work hard for the family and should be celebrated. Just like father’s on Father’s Day.
But this Mother’s Day, my heart is heavy. A friend just had another failed adoption. Another friend is going through some really heavy stuff with her teenage son. Yet another friend just lost another pregnancy. And today, I got a call from a friend who tragically lost her mother-in-law.
Grieving mothers.
Grieving children.
But this is what Mother’s day is about, too. In fact, maybe this is the best illustration of a mother’s love. Motherhood is just as much about grief as it is celebration. It’s all the love and pain, beauty and mess, sunshine and darkness, all wrapped into one relationship. One title. One person.
Mother.

So, whether you are celebrating or grieving this Mother’s Day, I think you will appreciate Michelle’s journey.

Continue reading “What life looks like after losing a baby: A guest feature by Michelle Jenison”

Mornings on Boyce Lane: how to pause long enough to see Jesus in the routine


Make no mistake.

Justin is a primary caregiver in this house. When you have kids with demanding physical needs, you don’t have time to play house. No gender roles here, we just divide and conquer.  Continue reading “Mornings on Boyce Lane: how to pause long enough to see Jesus in the routine”

How to talk to your child about their friends with special needs: parttwo



Thanks for stopping by today! Last Wednesday, we started talking about a few phrases that are gaining traction around our house. These little phrases are helping us navigate conversations with Ellie about her brother and sister with special needs.  And my prayer, is that they help you navigate conversations with your children about their friends with special needs.  If you want to get caught up, you can read PART ONE here.


Continue reading “How to talk to your child about their friends with special needs: parttwo”

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”