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5.15.2014

Courage

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 
RUN WITH THE BOYCES
5K RUN/WALK
SEPTEMBER 06, 2014 
IL BEACH STATE PARK

all proceeds will go towards gene therapy clinical trials.