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”

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”

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”

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”

Mother’s Day


Mamas-it’s here!

Whether you birthed them or bought them, borrow them and return them, those little humans are yours.

We burp and chop and dress and mop, play and read and kiss and repeat.

We sing and climb, plan days and sit in car pool lines.

We teach and listen and fold and pray, we mess up and show up, clean poop and throw up.

We freak out, we lean in, we forgive and discipline. We worry and hold tight, disagree and fight.

We still call. We still pray. We still give advice, and still check on your day.

We love, we cry, we lose, we die.

We are mothers, yes. And we are so much more. We are a village of women, of warriors.

Happy Mother’s Day!

From funerals to foster care: A guest feature by Betsy Bicket

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Bryan and Betsy are the type of people that should get their plan A. They follow all the rules. They look like and smell like Jesus. Always have, always will. Betsy’s the kind of woman that asked me once if she could just come learn from and be with my kids. Bryan’s the kind of guy that woke up at 2 AM one morning and sent Justin an email just to let him know he was praying for him. They are the type of people who ask how you are doing and really want to know your answer. They aren’t trying to be good, they just are good. It’s as challenging as it is refreshing. 

So when everything changed in their journey, I couldn’t help but watch. How would the they handle life when it stopped going according to plan? How would they handle grief and loss? The answer shouldn’t surprise you-they handled it with Grace and Truth. God took a most dangerous tool, pain, to refine them, deepen them, and shape them more into His image. They were, and continue to be, honest, vulnerable, and unwavering in their faith.

I am so honored Betsy sat down to share her journey with us today.

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Continue reading “From funerals to foster care: A guest feature by Betsy Bicket”

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!

God’s Perfect Timing and Transracial Adoption: A Guest Feature by Sarah Alm

 
We met the Alms years ago while both serving in youth ministry. Sarah and her husband, Jason, were on the junior high team, and Justin and I were on the high school team. After years of arm twisting and a lot of things out of my control, to my joy, they joined the high school team. Sarah is always up for anything, the crazier the better. I will never forget Summer of 89, our freshman retreat, when she played “buck-buck.” I don’t think I ever laughed harder than that day. She has been there to catch my tears, to offer a listening ear, and she shows up, which is a big deal to me. She is the girl I get into the most trouble with, and maybe am the most myself with. She just has a way of bringing out the best in others. In fact, we affectionally call her Switzerland because she is everyone’s friend.
Sweet Sarah wrote this blog post for me back in August and for some reason, to which I have no idea until now, I haven’t posted it. But I guess it is perfect timing.

Continue reading “God’s Perfect Timing and Transracial Adoption: A Guest Feature by Sarah Alm”

Margin for what matters

 

In November, I resigned from my dream job at Immanuel Church as the Director of Environmental Design. My last day is Jan 3.  It was one of the hardest decisions I’ve ever had to make. I have worked at Immanuel since 2007 and I loved it. Like, loved it, loved it.  It made me feel smart and creative, important and part of something bigger than myself in a way laundry and dishes can’t.  My job titles and responsibilities changed almost as frequently as my living room decor, and that is what I loved almost as much as I love the staff.  Continue reading “Margin for what matters”