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12.25.2014

Whisper

Have you ever felt God moving you in a direction you feel under qualified? 

Maybe even scared? 

A direction that seems impractical or a bit too audacious?

I sure do right now.  

For years, I have felt a little whisper in my heart to write.  To actually take my writing seriously.  Maybe even write a book.  In fact, this isn’t the first time I am writing about writing.  Maybe it’s writer’s block, or confidence block, or obedience block, but I never seem to go ALL IN. 

Maybe you can relate to my thought process. I get a “whisper.” Someone says, “I loved your blog,  I think you should write a book.”  Or, I get a personal message from a reader that said my words challenged they way they thought about life.  I go to a conference and they tell me that my story matters.  A New York Times bestselling author reads my stuff and tells me to keep writing.  I get a brochure in the mail that says, “She believed she could, so she did.”  

These “whispers” stir something deep inside of me, and I start believing that God wants to do something amazing through me

"Could God really use little, ‘ole me?"  

I start dreaming and maybe post a blog, or take a step in that direction.  But within days, I always seem to talk myself out of it.  “Why me?  I mean, who am I?  Everyone has a story. Can't I just be content and not make it about me?  Why would anyone care what I have to say? I'm not a writer.”  

What is your whisper? You know, that thing that God keeps laying on your heart but you seem to talk yourself out of every time? 

Maybe it is too risky. 
Maybe it means you can’t be comfortable anymore. 

I don’t know about you, but for me, the year’s continue to pass…but the whisper remains.

This Sunday at church I was reminded that God doesn’t choose me because of ME, He chooses me because of HIM.  He has a genealogy of broken, messy, and unqualified people telling His story.  I feel like God keeps whispering to me, “Stefanie, tell MY story. Tell people about the amazing things I am doing in and through you. Tell them about the secret blessings underneath pain.  Show them the joy I have put in your heart.  Build a platform so I can stand on it.  It’s not about you, it’s about ME.  I know it is risky to expose your soul to people.  You will be criticized.  Some people won’t understand.  But Stefanie, that doesn’t matter.  You have an audience of one.  All I am asking is that you are faithful and that you trust me. I will use what you give me.” 

That's the story what I want to be obedient to tell. And, it is in the midst of the busyness, in the midst of the storms, in the midst of the “now”, I feel God calling me to tell His story.

Officially in May, I am “graduating.”  My nine years in high school youth ministry will be done. God keeps whispering to me in this pending change. As I look towards my future, I am wondering….

What would it look like to be ALL IN? 
What would it look like to lean into the whispers?

How about you? What is the whisper that you will be leaning into in 2015? I would love to hear about it!


12.16.2014

A Second Chance: Uganda

I think I'm going to try it again. You know, by myself. Not as a leader, but as an observer. Almost like a clean slate. 

Uganda. 

A second chance at a mission trip with new eyes, a fresh perspective, and no expectations.

Let me catch everyone up to speed. Back in July, I took a group of high school students to Haiti. It was my first time in a developing country and I was excited. A lot of people that I know had gone and loved it. I love to travel and I love high schoolers, so I thought I would come back in love with Haiti, in love with missions, and fired up to go back.  That didn't quite happen for a number of reasons, you can read more here.  But in my heart I knew I would try again. I would go to another developing country at some point, just not for awhile.

Then, I met Bob.
If you don't know Bob Goff, you should.  He is a New York Times bestselling author and speaker that encourages people to live a lifestyle that fiercely seeks out ways of showing love.  In 2012, Bob wrote a book called Love Does and gave away 100% of the proceeds to build a school in Gulu, Uganda. Bob founded Restore International in 2002, an international NGO focused on trying to change a few lives for the better. Restore fights for freedom and human rights, works to improve educational opportunities, and aims to be helpful to those in need of a voice and a friend. Restore is a 501(c)3, non-profit organization, and works in Uganda, Iraq, Nepal, India and Somalia. And, because of Bob's Vision and the work of Restore International, he serves as Hon. Consul for the Republic of Uganda to the United States.

This past October, he was our guest speaker at Immanuel Church where I had the opportunity to meet him.  We quickly became friends and stayed in touch the weeks following the event. On a whim, he invited me to tag along, with him and a few others, on a 6 day trip to Uganda. So naturally, I said no. Twice.  
Did I mention Bob is FIERCELY persistent?! 

So within a few short weeks I was on a plane by myself to Africa.  
I know....crazy. 
[Warning: after you meet him or read his book, you may be tempted to say YES to him, too!]  

Can I share some of my adventure with you?

Here is my journal entry from Day 1: Chicago to Amsterdam 

I plan. I organize. It's in my blood. Travel is an organizer's dream. So naturally, packing 6 days of travel into one carry on for Uganda was a welcomed challenge. I printed the packing list and got to work.

Two weeks early.

A small backpack for my camera is all I need under my seat, I think. Everything else will be right above my head. 

Kleenex? Check. 
Malaria meds? Check. 
Passport, beef jerky, and a football for good measure? Check. Check. Check. 

And of course, my O2cool fan. 
Best. Invention. Ever. 
Need-to-sleep, fan-addicted friends? Don't leave home without this battery operated, treasure.

I should have seen it coming.

It was beautiful, my bag, that is. Every square inch bursting with supplies. I made it to security, removed every item I packed and article of clothing I had on to get through. (Anyone else feel nervous they are carrying an explosive EVERY time you fly?) Anyway, low and behold, I was the lucky winner of "the search the bag" award! 

What did I win, you ask? One "quick" wipe down of my bag, and evil stares for holding up the line. 

Then it happened. He touched the fan.  The only thing I could do was pray, "Lord, please, not the fan!" The batteries set off the warning bells. Good thing God answers prayer. [wink!] The nice TSA  man let me through, fan and all. 

Everything was going well until I got to the boarding ramp to get on the plane. 
Shoot. 
I made eye contact with the flight attendant. 
"Ma'am, I'm going to need you to step aside and check your bag." 

"Um, no." I thought....and may have even said out loud.....

Not my "everything-I-need-including-my 3-1-1 toiletries, my-cute-African-appropriate-outfit-for-tomorrow, and, well, EVERYTHING-is-in-there....BAG?!"

I tried to charm her by removing some items in the front and even comparing my bag to others that were breezing by with much bigger bags than my strategically packed carry on. Clearly, she didn't recognize or appreciate my skills. Augh.

Nothing worked. "Can I get it back in Amsterdam?" I pleaded.  
She smiled, and said no. 

Ok. Now I'm pissed. 
Does she know I am not that flexible? I don't trust easily.
Especially airlines and checked bags TO AFRICA!!!?! 

I frantically grabbed my leggings and a tshirt. Probably the two dumbest things I could find as she pried the bag from my grip. 

Bagless and defeated, I found my seat. 26a.

I see a sweet, older lady sitting in 26b and think, at least the flight should be tolerable since I was upgraded to a window seat.  In fact, 26c was empty. I don't travel much, but I think plane etiquette is for her to move over to 26c and leave the middle seat, 26b, open. 

Guess she missed that part in the flight video.

Here is sit, typing this journal entry. 
Bagless and cozy.

I notice the flight tracker and put it on. Flight trackers are so organized. So detailed. And, it makes me think about how often I wish life was more like that flight tracker. All the twists and turns mapped out. By the minute updates. Predictable. Precise. Even tells you the weather conditions. 

But life isn't like that, is it? At least not from our vantage point. I think it's more like a surprise checked bag.  You plan as best as you can and then life pries your fingers off the handle. 

I really hope my bag gets there. But in the meantime, I am going to try to make the best of it. I'm gonna snuggle with my new friend from Chicago... who happens to be reading about love and God. I'm gonna eat my almonds and be grateful. I'm going to trust that God is more interested in my heart than my luggage. 

I think I'm gonna turn the flight tracker off too. Just gets me focused on the wrong things. 
Like the destination instead of the journey. 

12.12.2014

I deserve it

A lot of well meaning people have told us, we deserve it. We deserve a handicapped house. We deserve a vacation. We deserve a "normal" child..... 

We deserve medical aide, a hand out, a help up, or even a break. Or, we deserve that extra fill-in-the-blank, that pricey whatchamacallit, or that unpractical wish. 

Many more times than I’d like to admit, I tell myself I deserve stuff too.

Do you do that? 

Maybe you’ve had a busy season at work and think, “I deserve a vacation or raise.”
Maybe you’ve lost some weight and decide you deserve to go shopping.
Maybe you’ve been through a trauma, so you give yourself permission to check out of life.  I mean, you deserve it, right?

Maybe it’s just me.

But the truth is, I am starting to think I don't deserve anything good. And the fact my kids have a rare, terminal illness, or I have to endure a lot of suffering in the process, doesn't qualify me for a hand out.

You know what I really deserve? What maybe we deserve? 
Warning: you aren’t gonna like it and some of you may even disagree.

Punishment, suffering, and death. 
Yuck-o.

That feels way different than a trip to Hawaii.

Punishment, suffering, and death are the result of the fallen, broken world we live in. It's the result of rebellion. The result of our prideful, “I deserve it” attitude.   I am starting to believe there is really nothing good about this life, me, or the general human condition apart from what God is redeeming.  Someone once said, that every good and perfect gift comes from above. Maybe he was on to something.  

So, what if? 
What if we changed our perspective from “I deserve it” to “what an undeserved gift”?
What if bad things happen to good people cause they live here, amongst bad things?  
What if bad things were what we came to expect simply because we are breathing? 

Sometimes, we want to blame God for all the sadness and brokenness in the world.  I mean, if we believe He’s in charge and all….what the heck is he doing? Why sanfilippo? Why loneliness, why fill-in-the-blanks?  Right? I get that.

But what if? 

What if God is for you? What if God actually agrees with you? That babies shouldn't die, or rebellious people should be held accountable, or we should blame someone for our pain? What if God was actually on our side fixing what we continually break, instead of the enemy allowing stuff to stay broken? What if God was more like a carpenter and less like demolition man?

You know....it didn't start like this in the garden, all this brokenness, sorrow, pain and death.  And it won't be like this in heaven.

I want to start seeing everything good, or perfect, or beautiful is an undeserved gift.  Maybe then I will stop feeling as entitled to good things and start being more grateful. 

Could you imagine what would change in the world if we walked around grateful instead of entitled? 

There would be no more people running red lights. 
No more turf wars or bullying. 
No more school shootings or lawsuits. 

Less pride.
Less selfishness.
Less deserving it.

Gratitude begets generosity. When you receive an undeserved gift it humbles you. 

A free house humbles you.
Extra hands humble you.
Friendship humbles you.
Anonymous checks humble you.
The breath of a dying child humbles you.

The beauty of keeping a posture of humility, or an "attitude of gratitude" as someone creatively put it, allows us to understand grace with a fresh perspective.  It has the power to change the way we see Jesus, and what he did for us on the cross. It also opens us up to extend grace to other people. We stop measuring their worthiness. And there's freedom when we stop measuring ours.


So I am learning I don't deserve it, but I'm grateful.

12.09.2014

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.


But today was different. I stayed longer on the couch and turned off the TV. We grabbed a few Christmas books and read. We chatted about what she saw in the pictures and talked about baby Jesus. Did you know, according to Ellie, that Jesus had a pacifier in the manger? Fascinating. 

Then, we played with play-doh. She destroyed, while I created. We made a house, a fish, a christmas tree,  and a miniature Ellie. All in yellow, of course.

And you know what? I had fun.  I actually liked it. And, it unlocked something in me I buried long ago.

Childhood.

I think I had trained myself to stop dreaming of days like these, for myself and my children.

When we had Jayden, I used to dream about doing typical things like reading and play-doh with my children. And slowly, those dreams died with their abilities. So, we learned quickly to create new dreams for our children that were less about their ability and more about our character. 

We still read to Jayden and Brooklyn every night because that is what you do with kids at bedtime. Jayden can still kinda turn pages of board books. Brooklyn can still remember the last word of some of the Lighting McQueen book.  But, we try to ignore that they are slowly losing interest. They eat books. They rip pages.  But, we keep reading. We keep reading because we want to communicate that their abilities don’t matter, they do. We are thankful they are here teaching us and it is an honor to read to them. But, at the same time in our hearts, we silently grieve.

On the other side of the spectrum, we have Ellie. Raising her has opened up new experiences and new wounds. She remembers, she imagines, she interacts. I try not to let myself get too excited about the future with her. It is so fun to watch a child learn. It is neat to have conversations with my child. It is crazy we can talk about yesterday, or even tomorrow.  She runs around with no clothes, full abandon, singing, dancing, and playing the drums. In our secret times, I whisper, "I love you" and she says it back.  I say next, "I am so proud of you" and she whispers it back.  I know Jayden loves me, but I have never heard him say it. Ever.  

Many times, it is the presence of ability that reminds me of the presence of disability.  They co-exist in our home.  

Do you ever feel tension between two truths?

I remember the moment I told Justin that Ellie didn’t have Sanfilippo. We both felt it. In concert, we celebrated life and grieved death. We felt excitement and joy for Ellie, and a fresh wave of sadness for Jayden and Brooklyn.  

It’s so challenging to have one foot in special needs and one in typical. One foot in death and one foot in life. One foot excited for the future, one foot in the terrified in what tomorrow may bring. One foot in progression, one foot in regression.  

It is beautiful tension.

So, today has taught me a few things.

Number 1. Occasionally reprogram my default setting.  Being me is good, and houses need managers.  But, play is good too.  Not just because we are told by great moms to whom it comes naturally, but because it is good for my soul. It is fun to play, imagine, teach, and create. I need it and Ellie does too.  

Number 2: It is in the tension we find peace. God is in the tension. In fact, I think that is the hardest thing to trust. We are uncomfortable with tension and want God to be an either/or when in fact, he is a both/and a lot of times. It’s like a rubber band stretched between two points. And without the tension, we can get too focused on the points instead of the tension.


For example, it isn’t good to just look at death. I know a lot of people that do. They are frantic for a cure, they are counting down the days and forgetting to live life. But I also know people that think they are invincible. That live like they, or their children, are guaranteed tomorrow. Neither fixed point is good. It is in the truth of both points God stretches across.  It is the very truth that we are going to die that makes us want to live. 

So somehow, it is the very tension in which I must rest.

10.31.2014

Storyline

Hello, world.
Hello, blog.

Hello to the messy, vulnerable place of evaluating my life.
I've been avoiding you in fear my story doesn't matter.

But now I believe that isn't true. Because if for no one else, it matters to me.
And that is enough.

Haiti 2014

These are random thoughts I documented in my journal after I returned from Haiti in August.


Honestly, I don’t even know where to begin processing my experience in Haiti.  

The days were long, but the week was quick.  I saw so much.  I met a lot of great people that were quick to befriend me, but many would try to sell me something.  That bothered me. I felt used just because I was “blan”, or white.  But, in the context of Haiti, I get it. We are the ones with the money. They have a need and I can meet that need.  It’s the same with Build with the Boyces. We asked strangers and friends to help us.  And, their need, and my ability to meet it, is far less a sacrifice on my part…yet there needs to be a line drawn somewhere….like when my money ran out.

I have never said “foto?” so much in my life.  It turned into my "thing" and became the tool I used to connect.  I first thought at VBS they were well behaved….and they were, but they were also starving.  Some, not eating for days until we fed them.  They were tired, but many didn’t show it. They were hot, but they still had on their “Sunday" best. Their “best” are things I wouldn’t even think to dress my children in. Clothes that were dirty. Shoes that had holes in them or didn’t fit. Pants that were too small to button. Pajama shirts with jeans that looked like capris. Throw away event t-shirts from the states. You know, the ones you bag up and donate to Salvation Army? Those. Little ballerina outfits as dresses. Torn. Worn. Anything but custom.
And that was their best.

They sang. They played. They colored and even laughed. They smiled. But whenever I would go to take their picture, they would intentionally not smile.  They have strong faces. Tough faces. Sad faces.  And that makes sense given their reality. The challenge for me was trying to capture both realities.

We wouldn’t think to stop laughing or smiling for a picture. In fact, that is the very thing I spend my life trying to capture when shooting my children. Why do Americans always smile in pictures? I think it’s a cultural mask we all wear to seem like we are happy. Because, even though we have much to be grateful for, I doubt we would say we are always ready to smile.  This is something I am trying to process as well.

Babies just pee. Some wear cloth underwear and pee on it, others wear nothing.  Smart. Same reason Ellie is naked in the yard back home.  In fact, my little baby girl I fell in love with in Haiti peed on me the one time I was able to hold her. She was scared of white people. I get it. Ellie is scared of Isaiah.

There was a girl in the park the last day with special needs. She followed me from the compound to the park.  At first, I thought she was going to steal my camera because of the awkward way she came up behind me, but all she wanted was to hold my hand.  We held hands to the park and she wiggled right up next to me. She loved my camera, especially the videos.  She watched the VBS messages and tried to repeat “God loves you” in Creole.  She kept wanting to watch the messages. Then, I video taped her. She loved watching herself smile. I taught her how to push the buttons to replay it and we did that for about 15 minutes. Then, she went to play with the other kids. She couldn’t understand the hand claps and she couldn’t understand the ball game, but she tried.  She came back to sit with me. Her dress was so worn it was falling apart when she tried to fix it.  She owned no bra.  When she did notice her straps falling, she tried to fix it and the dress ripped so I took out my hair clip and bobby pin and fixed it up. Even in Haiti I'm pulling up shirts!

My mind was so foggy this trip. It was like I was low on gas or confused. I couldn’t process at a normal speed. My brain was like the spinning thingy on the computer…thinking….thinking…..thinking….

I was ready to go home. When I landed in the US, I felt proud. I felt grateful. For all the problems we have as a country, I am so thankful for all the things I have. Friends. Family. Drinking water. Ice. Toilet paper in the toilet. A warm shower.  No malaria or chicka-munga.  No bug spray. Convenience.

Haiti taught me even more about the shared human experience. There are many life experiences we don’t have in common, but we share many things. Like class and rank, like the desire to learn and grow. Like the power of touch and smile. Like creativity and hard work. Like the desire for love and connection.

Jesus is present in Haiti.  Maybe even more than America.  They have mastered the art of depending on their Heavenly Father for even just their basic needs of food, water, and shelter. Maybe there should be more missions to the rich instead of the poor.  We are so self-sufficient aren’t we?  We have much to learn.

I have learned more about myself and my interactions with missions.  I don’t feel called to Haiti. I wanted so much to fall in love with the people and the country and to be honest, I didn’t. I don’t know if I would want to go back. Everything is difficult and inconvenient. From wiping your butt, to what you can and can’t drink, getting sick, using bug spray, traveling, being sweaty, sticky, icky, dirty, and hot. Quick showers, dark meals, suspect meats….it all is really hard.  Even community. As much as I like community, I like space. I like my house. My physical and my mental space.

Many students felt closer to God in Haiti, and I think I felt further away.

I felt rushed.  Not enough time to slow down, to process. To be with God because everything, even devotions, were directed.

I struggled with my place in Haiti in a leadership role.  At first, felt disconnected because Erik and I were the only leaders that hadn’t been to Haiti.  The first night, I broke down.  I was tired, hot, and feeling broken as I cried myself to sleep.  A good night’s sleep passed that emotion.

I struggled knowing when to step up and when to step back.  I felt disconnected at times.  I enjoyed being with our leadership team.   I am so proud of our students. It was so great to see how they stepped into leadership roles.

I love being home. I love my comforts.  I have a deeper level of gratitude for the simple things. Sure, there are still moments where I struggle, mostly as a mother.  I desire more than ever, to get better and better at watering my own grass. How can I make my life the best it can be? The grass isn’t greener on the other side. It is beautiful right here.

I am tired. like hit a wall tired. I can’t seem to get motivated to do a whole lot.  

It just hits me where I need a nap.  
Hum.

7.10.2014

Because I can...

I was a dancer.
In junior high, high school, and college my sport was dance.  And, although I didn’t have a lot of technical training, I enjoyed it and wasn’t half bad. I loved being on a dance team.  Post college, I even taught dance at the park district.  But after I had Jayden, I hung up my dance shoes.

Never in a million years would I have thought I would start running at 33.

In fact, I cringe to call myself a runner because I know “runners.” I married one.  The ones that have PR's, run miles in 1/2 my time, and talk in a language I don’t understand. 

Have you ever tried running if you are a non-runner?  It’s hard.  All those side cramps, leg cramps, blisters, and sweat?  Tough stuff to work though.  And for us “hard core outdoor” runners, we battle the elements.  I started running in February of this year, which I think may have been the longest winter ever in IL.   Snow? Run. Rain? Run. Hot? Run/Walk.  I have tried it all.  Emphasize TRY.  

A lot of it is mental.  Which is harder.  I have numerous coversations with myself about how far I think I can go vs. actually go.  

Where exactly is that pretend finish line?

I think I prefer calling myself a regular jogger. 
Lately, I have been asking myself, how did I get here? How am I running 5k races?  Why does my body and mind crave a good run? 

Last year, I took pictures for Running for Scott. It is a great event put on at Jayden’s school [Laremont] by Jen Burke and Liz Pumala.  It is in loving memory of Scott Conlon, a vibrant young boy who made people smile and loved riding his adaptive Rifton trike.  The funds they raise from the race provides scholarships for other families to get adaptive trikes.  Like ours.  

And on race day, I was taking pictures.  There was no way I could run. I was struggling on the 1/4 mile I ran with Jayden in the kids race.  One of the shots I got changed everything.  It was the back of the t-shirt from the race.  It says:

"When I get tired, 
I remember those who cannot run,
and I run harder for them.
I know they would do the same for me."

It wrecked me.  Who was I running for?  I felt so selfish. God had given me this body and I felt he was nudging me to get healthy, and start running.  I couldn’t shake the desire to start.  So (8 months later) in February, with snow on the ground, I set out. I didn’t even tell Jut in fear of failure.  I ran Boyce Lane and had to stop.  Side cramp.  A few weeks, I did Marc Court (.5).  Then, like in Forrest Gump when his braces break off, I turned onto North Ave and ran.  

I ran 1 entire mile.  

Week after week, I just kept running.  If it was 40 degrees or warmer, I would run.  It was me, the pavement, and my urban beats.  

Then it happened.  I ran 3.1 miles.  I couldn’t believe it.  [Actually, I ran 3.01 for awhile until Jut corrected me to 3.1]

My first run with people was Running for Scott 2014.  
I finished in 31:34 and got that shirt.

My next run was Antioch Run for Freedom July 4 and I “PR-ed” 28:19.  (personal record….fancy running term, I guess)

I actually crave putting my earbuds in (I upgraded from my urban beats) and setting out for a run. My favorite runs are a 4.0 mile trail run with some Hillsong music on at a nice 10.30 pace.  

So, why do I run?

I run for myself. I feel better running. Time to get my endorphines going. Time to take care of my health. To get my anger out.  To get a break from life.  And, it’s free counseling.  [I get it now, Hubert!]

I run for alone time with God. Sometimes, you will find me singing, fighting tears, praying, or lifting my hands in praise as I run (I know, I must look really weird).   

I run for Scott and all the other people that would run if they could.  Although I never met Scott, it has been a blessing to meet his parents and see how he touched so many lives with his character. I feel like we all have a responsibility to use everything God gave us to shine.  Scott did that and I can try.

And I run for my kids. I run for Ellie so she sees me take care of myself, set goals, and hopefully can find something active she can enjoy that gives God glory.

I run for Jayden and Brooklyn so they can have a chance at a cure.  I run in purple shoes as a reminder of what it means to have courage.  They are always pushing me to be my best and finish well. 

September 06, 2014 we are hosting our first 5k RUN/WALK at Illinois Beach State Park.  All the money we raise will go towards funding gene therapy clinical trials, a potential cure for Sanfilippo. You can learn more and get registered at www.runwiththeboyces.com.

So, who are you running for? 

I encourage anyone to just start.  Start slow. Even if it’s walking, or biking, or anything that gets you moving.  Take it from someone who has spent a decade not exercising….it feels so good when you are done!  

I love my app, Map My Run, but others are training for our race using C2 5K (couch to 5k apps) and a few joined Ashley Galarza’s amazing group run training program in Gurnee which is fun and FREE so you have motivation and accountability from others.

Who knows how long I’ll run.  
Maybe my body or my motivation will change.  
But for right now, I can run…..so I will.

RUNNING FOR SCOTT 2013
RUNNING FOR SCOTT 2014

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.

4.23.2014

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. 

Realizing time would eventually run out taught us to be present in every moment.  

Accepting their fate made heaven all the more real.  

In fact, it wasn’t until the birth of Ellie that I can honestly say I felt a desire to live again. It reminds me of Paul saying in Phil. 1:21-23, “For to me, to live is Christ, and to die is gain...having the desire to depart and be with Christ, for that is very much better”.   I have started to crave Rev. 21:4,  a real place where "He will wipe every tear from our eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

To me, it is far safer to put my hope in eternity than a cure.

So with all this news about gene therapy, the Eliza video going viral, and the idea of a different future for Jayden and/or Brooklyn, has brought on a wreck of emotions.

My soul is restless again.

I feel like someone is trying to unbury the hopes and dreams I already laid to rest.  And before you judge me for not wanting to fight, you have to walk 5 years in my shoes.  Only people that have grieved the life of their children can understand.  

Speaking with the O’Neills brought me back to the early days with Jayden, when we believed that treatment or a cure was around the corner. But over the years, that dream was placed the box, too. We started to settle in, and wait.  

It’s the feeling of rest after a long fight, even if you've lost.  

But this news of a cure, ever changing and diminishing as the days pass, has me frazzled. Only 9 children with MPSIIIA will even be eligible for the clinical trials. There is nothing I can do to get Brooklyn and Jayden to be one of those 9.  Should I pick up the shovel and start digging? It is so dangerous to open that box of dreams.  

All this reminds me how out of control I really am.

There is a real, honest part in us that doesn’t want to fight for a cure, only to be disappointed when it doesn't come. It is like watching your children die, twice. 

But, I can’t deny that one little prayer I say everyday when I have surrender my babies to our heavenly Father…

I trust you, Lord…but please, not today. Don’t take them today. I’m not ready.  

So it is with that simple prayer, I will fight for a cure.  But not for one second, fooling myself that this is where my hope comes from. We will fight because that is what we do until the day we are all called home.  We fight because it is in the fight, God is glorified in and through us.


And that box? It needs to stay buried.  It’s full of the wrong dreams anyway.

4.21.2014

updates regarding gene therapy, please read and share

Thank you, friends!
The response to my blog post and Eliza's video, is amazing! Not only has the video gone viral, it is causing other media attention. Because of your sharing on Facebook, my last blog has over 3,000 views!

please read the updates and share: Today.com article

donations and tax deductions
To clarify, we are not a non-profit 501c3 status, so if you would like to donate directly to us, we can't give you a tax deduction, but we can make sure it gets to the right place.  All 3 links below have a 501c3 status if you prefer to get the money to them.

is this really a cure?
I don't want to mislead anyone. This is funding gene therapy clinical trials. This is essentially a cure based animal research, but only if it works in humans. There is no way to know until they do a clinical trial with children who have Sanfilippo. We are learning about everything as we go, so I don't claim to know everything. This is why the money is so important.

Why parents do the fundraising.
In a perfect world, pharmaceutical companies, like Abbott or Shire, would see the potential of life-saving treatment, and fund the clinical trial. But because Sanfilippo effects a small percentage of the overall population, unlike diabetes, cancer, or heart disease, large pharm. companies don't see gene therapy as a good, profitable investment....and that is the sad reality of rare disorders.

Or, we would need a big, generous donor or celebrity who would support the trial.  Which I don't have in my back pocket :)

Did you know there is even a data base filled with potential life-saving drugs for rare disorders that lie dormant because there wasn't is money to continue research? Who knows what cures are lying in there.

So parents, and the friends and family around us, are the only hope to raise funds for treatment at this point.  This is a grassroots campaign where every dollar REALLY counts.   Remember, the Pepsi texting campaign? This is the same place those dollars went.

Please consider donating even $20 or $50 
to Livlife or ElizaONeill or Bens Dream

We are all working together, not against one another. The more united we can be in our efforts, the better! At this point, donating to one of the three site above is the easiest, quickest, and most helpful thing you can do to support Jayden and Brooklyn.  

local involvement
We are still planning on getting together this Saturday morning at 10:00-11:00AM to pray at our house. We also will be sharing some fundraising ideas, so if you have any thoughts, please bring them!  Please shoot me a message if you are planning on coming. We may eventually become a non-profit ourself, but that would take too long and cost too much at this point in the game.



Thanks again for reading and sharing, a few simple clicks really make a difference, so if you can't donate....PLEASE share this post!

Thank you!


Here is the today.com article if you don't like following a bunch of links:

Cara and Glenn O’Neill were stunned when doctors diagnosed a deadly, rare and incurable neurological disorder in their bubbly 4-year-old, Eliza. The disease, Sanfilippo syndrome, destroys brain cells and kills its young victims before they are out of their teens.
“We felt like we were in the Twilight Zone,” said Cara, a pediatrician from Columbia, S.C. “It was stunning.”

An internet search revealed even more bad news: the disease would start taking a toll soon. Many kids start to regress by the time they hit 5 or 6, losing the ability to speak, to walk, to feed themselves. “That’s when my heart completely sank,” Glenn said.

But the search also turned up a glimmer of hope. At Nationwide Children’s Hospital in Columbus, Ohio, researchers had discovered a gene therapy that cured the disease — but so far, only in mice.
Eliza
Stacey Quattlebaum / O'Neill Family
Affectionate, happy, active, "the kind of girl who keeps you on your toes," is how her mother Cara describes Eliza O'Neill. Her parents are raising money to research a treatment for Sanfilippo syndrome, a fatal disease that will likely kill Eliza in her teens unless a cure is found.

The researchers were ready to start testing the therapy in kids, but they needed to raise $2.5 million to put together a clinical trial. And because Sanfilippo is rare, no drug companies were signing on to fund it.

For Eliza, every moment counts. At 4, she is approaching the age when kids with Sanfilippo start losing abilities and even if the therapy would halt the disease, it wouldn’t bring back the brain cells that had been destroyed.

So the O’Neills turned to the internet once again, this time to raise the money needed for the clinical trial. Glenn actually Googled "how to make a viral video" — his first effort, a homemade video on gofundme.com, garnered donations, but not nearly enough to make a clinical trial possible.

That all changed when Benjamin Von Wong, a Canadian filmmaker, volunteered to help. He and his team spent eight days documenting the family’s story. The new video went viral with the hashtag #SavingEliza, and in six months the family has raised more than $380,000 for research.

On the video, a teary Glenn says of Sanfilippo syndrome, "You know where it's headed, it's headed toward suffering, it's headed toward pain for her. And as a father, you want to be able to protect your children."

"Hope is a nice word," mom Cara adds, "but we need action."

There is no cure. Even if the O’Neills manage to raise the $2.5 million, they know it doesn’t guarantee Eliza will be helped. She may not qualify for the trial, though researchers think she probably will. The trial may not work. And there are always risks with any unproven therapy.

With no other treatments available, those risks seem minor when weighed against the certain death that awaits Sanfilippo kids.
“As a parent, you have to be the advocate for your child,” Cara said. “You have to give them the best shot possible. And this is her best shot.”
#SavingEliza
Benjamin Von Wong / O'Neill Family
Sanfilippo syndrome usually starts to affect children around age 5 or 6; Eliza O'Neill is 4. Her parents are hoping to get her into a research trial this year.

Children with Sanfilippo syndrome are born with two copies of a faulty gene. Normally, the gene makes an enzyme that breaks down long chains of sugar molecules called glycosaminoglycans, or GAGs. They “are the glue that holds cells together,” explained Dr. Kevin Flanigan, a principal investigator at The Research Institute at Nationwide Children’s Hospital and a professor of neurology at the Ohio State University College of Medicine. Because the enzyme needed to break the GAGs down is missing, that "glue" just keeps accumulating in the cells, gunking them up and eventually killing them.
Researchers working on rare diseases like Sanfilippo syndrome often have to turn to foundations and other sources for funding. As for the O’Neills’ fundraising efforts, Flanigan said, “the amount of money they have set out to raise should allow us to complete the trial.”

The fix developed by Flanigan and his colleagues is to attach functioning copies of the gene to a harmless virus that is injected into the patient.

The beauty of the virus is that it can pass through the blood brain barrier, which means that it can be injected intravenously instead of directly into the brain, said Haiyan Fu, the researcher who started the project about 16 years ago and a principal investigator at Nationwide’s Research Institute.

The virus “infects” cells with a working copy of the gene, and delivers a correct copy of the gene to enough cells that it can fix the damage. 
Tests in a mouse model were stunningly successful.
Eliza O'Neill
Benjamin Von Wong / O'Neill Family
Eliza O'Neill cuddles with mom Cara and dad Glenn, who are desperately trying to find a treatment for her rare, fatal disease.
But mice aren’t humans and there are plenty of examples of promising therapies that cured diseases in mice but didn’t help a single person.

More worrisome is the lack of any safety data in children. It’s always possible that the body will react badly to the therapy and mount an immune response, said Dr. James M. Wilson, director of the gene therapy program at the University of Pennsylvania. Wilson’s lab developed the viral vector being used at Nationwide.

“The possibility of an immune response is something that families clearly need to be aware of,” Wilson said. “But depending on how severely affected a child is, the benefits may outweigh the risks.”

That calculation is a simple one for the O’Neills. If their daughter doesn’t get the gene therapy soon, she will start to regress and she will die in her teens.

“I think for this patient at this point the best bet is to try to get into a clinical trial,” said Dr. Maria Escolar, director of the program for neurodevelopment of rare disorders at the Children’s Hospital of Pittsburgh at the University of Pittsburgh Medical Center. “This is probably the worst thing a parent can see: their child deteriorating before their eyes and they can’t do anything .”

Desperation has turned parents into advocates finding the dollars to move research along.
“I’ve been working in this field for 15 years,” Escolar said. “The biggest changes are because of parents, not the pharmaceutical industry, or the researchers. Parents push it.”
That certainly describes Jennifer Seidman. Her son Benjamin was diagnosed with Sanfilippo syndrome when he was 2. Like the O’Neills, Seidman quickly discovered there was no cure or even any therapy.

She started Ben’s Dream — The Sanfilippo Research Foundation, Inc. hoping, just as the O'Neills now do, that the money they raised might help researchers find a cure in time for her son. But Ben died this February, just a week shy of his 18th birthday.

“It’s heartbreaking and we miss him every day,” Seidman said. “But we’ve continued to move this research forward because I don’t ever want another mother to feel the way I feel and if I could prevent that, it would be a wonderful thing for me personally.”
And it might help the Seidmans find some meaning in what Ben went through.

“Fifteen years ago, I promised my son I would cure this disease,” she recalled. “Although I couldn’t do it in time for him, I’d love to leave a cure as part of his legacy.”

Linda Carroll is a regular contributor to NBCNews.com and TODAY.com. She is co-author of "The Concussion Crisis: Anatomy of a Silent Epidemic” and the forthcoming "Duel for the Crown: Affirmed, Alydar, and Racing's Greatest Rivalry"