cour·age. ˈkərij,ˈkə-rij/. noun.
the ability to do something that frightens one.
“she called on all her courage to face the ordeal”
strength in the face of pain or grief.
“he fought his illness with great courage”
bravery, courageousness, pluck, pluckiness, valor, fearlessness, trepidity, nerve, daring, audacity, boldness, grit, truegrit, heroism, gallantry

The color purple represents “courage” in the MPS world. And many days, I don’t think I have much of it.

Like today.

I realized this morning, that I am struggling to “like” one of my children. Sure, I love her, but I am getting so tired of her “naughty” that I find it hard to want to be around her. Parents, can I get an “Amen”? She hits. She kicks. She talks back. She rips paper. She colors on everything. She is constantly seeking food. She antagonizes her sister, and “mother’s” her brother: both induce crying from her siblings. She is not winning the race for “most liked” in the Boyce home these days. She tells me “no” and “stop it”. All the time. And she want what she wants, when she wants it. Of course, she is way better at school. I even tried to sell her to Ama yesterday.

Ah, Beeba.
Fiercely independent, Brooklyn.
[She comes by it honestly.]
With this long list stacked against her, it’s amazing that she can soften me with one smile. Now, don’t get me wrong, I am so “done” in all the other moments I sometimes need to walk away before I freak out.  But most of the time, the flip switches, and she goes back to being the sweet, singing, laughing child I am beginning to miss these difficult days.
I get it. It is partly the nature of raising any child.  If you have kids, I am sure you have experienced this stage (or are currently putting your child in a choke-hold so you can finish reading this).  But dear ‘ole Sanfilippo complicates things for us.  They grow out of it, but not in the same way as a typically developing child. You see, this is the stage. The stage before everything starts to disappear.  And it’s bittersweet.  It gets easier in some ways, harder in others.  She may stop some of the “naughty”, but it also means she will stop talking. She may stop the food seeking, and grow into a feeding tube.  She may not mess with her siblings, not because she doesn’t want to, but because she physically can’t.
That is unless she gets gene therapy in time.
So as the tension rose this morning in our home as we were frantically trying to get the kids ready for the bus, I thought about MPS awareness day and what it means to have courage.  I know my children have courage. I know all MPS kids have courage because they have the ability to do things that frighten others. They are strong in the face of pain and grief.  But today, as the world shines a bit more purple, I want especially honor all the moms and dads who try to courageously love their children.
1 CORINTHIANS 16:13-14
Be on your guard; stand firm in the faith; be courageous; be strong.
Do everything in love.
I love this verse because it reminds me of two truths.  I am called to be courageous and I am to do everything in love.  Love is patient. Love is kind.  Love isn’t about me, it’s about Brooklyn.  So I am convicted that maybe I need to evaluate if it is a question of love vs. like. Courageous parenting in my house is taking a deep breath. Courageous parenting is lowering my voice and setting the tone.  Courageous parenting is embracing every moment, bad and good, and trying to learn how I can put Brooklyn’s needs before mine. Courageous parenting doesn’t keep record of wrongs (ignore my first paragraph). Courageous parenting has faith, has hope, and has love.
I want to be a courageous parent. I want to be a courageous person.
Thank you everyone, who wore purple. Please feel free to share our blog to help raise awareness for MPS today.  Also, share this video link to learn more: Eliza Video
Also, save the date for our first
SEPTEMBER 06, 2014
all proceeds will go towards gene therapy clinical trials.

5 thoughts on “Courage

  1. I know we don't actually know each other, but I follow your blog. Anni is a year older than Brooklyn. I can't even tell you how much I was encouraged by this post. When I get after Anni, lose my cool with her, get mad at her, I feel doubly bad about it because of her disease. To get mad at my other daughter who is unaffected already feels gross, but when I know Anni can't help it…it hurts worse. I'm so thankful to hear that other parents of special needs kids aren't always perfectly patient and understanding with their children. Thanks for reminding me that they're human, I'm human, and we serve a good God who asks us to press in to Him to love supernaturally.


  2. Cathy-Thank you, once again for your encouraging comments and support. It always warms my heart to hear how God is using my brokenness for His glory. Thank you for taking the time to write, I have started to look forward to your sweet words 🙂


  3. Oh my word, Stefanie – there is no need to apologize for anything! Your posts are so achingly honest and thus, inspiring. You have amazing courage! The courage to share your true and most innermost feelings with a host of people who have never even met you (like me). People who might judge or criticize or people (like me) who just want to vanquish San Filippo and its lysosomal storage minions. Now. Today. Before one more family feels the heartache of “no treatment – no cure.” Your unselfish sharing of your story along with the same giving from too many other parents facing this unimaginable grief has given the world names and faces, not just statistics. A huge community has come to love Jayden and Brooklyn and works to find a solution because we hear “MPS” or “San Filippo” and we see their faces – real, beautiful, amazing children who light up the world. I have many friends (whom I also have not met in person) who have lost children to Niemann Pick A, another lysosomal storage disease. Two of those families have formed foundations to further research for treatments and cures for all LSDs (;;; I am proud to be a part of community raising awareness of, working toward the elimination of all lysosomal storage diseases and offering HOPE always! All of you are in my heart and in my prayers always.


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