Calling: I think I have found mine, what about you?

What is your “calling”?

[A.K.A. Why you're breathing.]

Merriam-Webster defines calling as:

-a stong desire to spend your life doing a certain kind of work

-the work that a person does or should be doing

-a strong inner pulse toward a particular course of action especially when accompanied by conviction of divine influence

-the characteristic cry of a female cat in heat

Do you know what yours is? 

Hopefully not a crying cat.

Howard Schultz had a vision for a coffee shop on every corner where people would gather, and Starbucks was born. 

Martin Luther King had "a dream that one day this nation will rise up and 

live out the true meaning of its creed: 

"We hold these truths to be self-evident, that all men are created equal."

Mother Teresa dedicated her life to 

"wholehearted free service to the poorest of the poor.”

Frederick Buechner says, “the place God calls you to is where your 

deep gladness and the world’s hunger meet.”

Perry Noble, Pastor of New Spring Church, says our 

primary calling is the great commission, sharing the Good News of Jesus. 

Our secondary calling is how we go about doing that.

I admire people with vision, dreams, and callings. And, I agree with Mr. Noble. But what about our secondary calling then?  

How do we know what we are living for? 

When it comes to calling....

Some people get one. 
Some get many. 
Most of us are searching. 
And few don't care.

I have always been bit envious of people that know how to activate their calling. If I'm being honest, sometimes I want to borrow or copy people's calling cause I am too afraid of failing at my own.  People who know their calling seem so confident. They appear to know who they are, and knowing yourself makes you magnetic.

It think a calling starts as a whisper, a burden, or a problem that needs solving. It usually is tied to change. And change is painful. Calling meets you right in the face of fear.  It will involve risk, vulnerability, and criticism. But something inside of you knows it is worth it. My current calling makes me cry and sweat when I start talking about it. Like I am down right scared.

And if you are one of the vast majority of people still searching, no worries. Google it and you will quickly find out you are not alone.  There are thousands of articles, tests, and steps to discover your calling.  And while those may be helpful, I think discovering it is a mixed bag of trial and error, determination, skill, who you know, and who's will you are pursuing, yours or God's.

I have written about this before, but for years I have felt a stirring in my heart and mind to share our story more publicly. Not because I am anything special, but exactly because I am not.  I'm trusting that it is currently my calling....but the truth is, I'm not quite sure. The only thing I can do is try.  Just do it.  Stop talking about it, and jump.

I have seen how God has used our story to bring people closer to Himself, encourage someone who has been struggling, move people to compassion, shape the way they interact with people who have disabilities, and help shine a light on what it's like to live and love in the midst of broken and painful circumstances.  

When I write, I feel God is giving a voice for the voiceless. Bursting open the secret, and many times misunderstood, world of disability. My blog gives readers exposure to life on Boyce Lane.  And when people read, it gives them permission to stare.  And the longer they stare, the more normal we start to become. And everybody wins. God gets the glory and people see the world a bit differently. Both of these wins bring even more purpose to Jayden’s life and Brooklyn's life, and to our journey. This is my purpose in the pain. This is why I want as many people to look as possible, even if I have to endure the stares. 

My 2015 resolution is to be "all in." To lean into this current calling.  Many people have told me I should continue to write.  A few have even said I should write a book, which is scary, and hard, and quite frankly, makes me want to puke.  I feel so inadaquate.  But I am learning it is less about talent, and all about obedience.

Why do we sabotage the voice inside of us with words like, "I can't" or "I'm not", when God whispers "you can" and "you are?"

At times, a calling is more of a burden than a blessing. It's something you have to do, not usually what you want to do.  Something bigger than yourself.  Something that freaks the crap out of you. So if God is "calling" me to write, I think I should.  And if He is proud, that’s all that matters. And if He wants to use our life to work in the world, I am honored to be a small part of what He is up to.  

Risk and all.  Sweaty pits and all.   

Terrified of putting myself out there. 

Vunerable. Messy. Naked. Afraid.

What if you never try to do the thing that God is calling you to do? 

What will the world miss?

What if you believed that voice inside of you, whispering you to take a leap?

I have been trying to sort this out in a car analogy with Justin.  Something we share from our childhood is our love for matchbox cars.  I feel like my life as it is right now is like my favorite matchbox car. I love that beautiful thing. I push it back and forth with my hand, I sleep with it, and I take it everywhere I go. Sure, it is a bit beat up and broken, but it is AWESOME.  

But something isn't settled in my soul.  I feel like God keeps tapping me on the shoulder.  He keeps whispering, like a great Dad would, "I am so proud of you." "Thank you for loving the life I have given you." "Stefanie, I will love you and be proud of you either way. But, if you trust me, and give me your matchbox car, I have something waiting for you just around the corner." And, I am so scared to give him my little life.  I am so scared to trust Him.  But, I sense that behind that corner is a real car. Not a matchbox one but a real, get in it and drive kind of car.  I feel like I am holding onto this safe, familiar life I love, but God wants me to surrender it so I can share in even greater gifts He has for my life.

So this is me putting myself out there. If there is ever a blog you read that resonates with you or you think people need to read, I would be honored if you would share it.  The easiest way to do this is find a post you like, open it, and share it on your favorite social media site, like Facebook or Twitter. Click here if you don't know how to do that. 

When you like the blog post, the link appears more frequently in people's newsfeed. 

If you comment, the exposure goes up even more. 

If you click "share" AND write a personal comment about why you like it or why your friends should read it, Facebook notices it and it gets the most exposure on people's new feeds. 

This is with anything you share, not just my blog. You can also sign up to get my blog posts right into email and forward them to friends of you are not on social media a lot. 

I am also excited to announce that I will be launching a website with an easier .com to remember in the next month.  I am even opening myself up to speaking engagements.

Trust me, most of me would like to hide! 
I would love to avoid exposing my heart, my tears, and my weakness. 
I would love to avoid sifting through the pain and the lessons altogether.
I would love to keep it all to myself. 

But, I don't think that is what God is asking me to do right now.  At least not yet.

And as far as calling goes....

I know who I am and who I am becoming.
I am a writer.
I can share my story in front of an audience. Which makes me a story teller.
I am a lot of other things too.
I have a message.
His message of love, and pain, and death, and renewal. A story of courage, hope, and tension.

I am called to share it.

past the wishing

Have you ever been surprised?

Maybe it was a birthday party, a wonderful gift, or special honor.

I typically don't like surprises. I think is a "type A" control issue. They make me vulnerable and nervous.  Well, I like them when they're over, just not when my friends are giggling and grinning, and I have no idea why.

Anyway, a few years ago, I got a surprise.  My dear friend, Kelly Hubert, nominated me for GIVE LOVE.  It is a special blessing for a woman who is at a low point, who is in the process of overcoming impossible odds, or who has stepped out to do something brave. 

Isn't that so nice?!

So a few of my girlfriends kidnapped me for what I thought was going to be a fun sleepover with a mani/pedi day, but turned into a life-changing moment on a stage.  I'll be honest, I was a little suspect when we pulled up to Rockford First and there was a women's conference happening.  This wasn't a nail salon! And as we sat in the audience, the lights dimmed, the video began to play, and the tears began.

The Original Conference stole my heart that day. Not because they gave me something, but because they were looking to give. So this year, I just had to make sure you got your official invitation. I know I am so excited to be going this year because the theme, past the wishing, is right where I am.

Who's with me?!

Jen writes:

Hello Beautiful!

It was a warm, sunny day last May when a small group of girls and I gathered around a table at our local Starbucks for what we thought would be a light-hearted meeting to look at design ideas for the 2015 Original Conference. As every girl gathering goes, we began with small talk as we sipped our coffee, laughed, and shared comical stories of how our crazy morning routines had unfolded. As our meeting went on, we began to speak to the content and message of this invitation, and what ensued was an incredibly divine moment which set the course for a journey that would profoundly impact each of our lives. 

In the course of discovering what we wanted the conference to be about, we were finding out what we as individuals wanted to be about. One by one we ended up sharing how there were dreams, goals, aspirations, and ideas that each of us had for our relationships, families, careers, callings — many of which were just wishes at the time. Nothing, or very little, was being done about them. In the busyness and craziness of our lives, we were each left with a mounting, muddled list of goals, regrets, wants, and needs that were just sitting on the back burner of an already full life. 

Sound familiar?

As we continued to share with deep honesty, the hustle and bustle of the coffee shop seemed to become muted background noise to an oh-so- important place in time. We all leaned in to listen intently to one another and huddled close for this holy moment, which included a few tears, napkins as tissue, and the occasional giggle as we realized this was all happening in the most unlikely of places at the most unlikely time, and isn’t that just like our God.

At the end of our time together, we knew that this was just the beginning. This wasn’t just going to be a nice, emotional conversation that took place between girlfriends that would be chalked up as a sweet memory. We were ready to do something. We all committed to jump on the journey of intentional living together and just see where it would take us. We decided to move past the wishing.

This, my friend, is the backdrop of this year’s conference. I have seen God so beautifully weave together a profound, life-changing message that He wants to communicate to us this year. A message that has deeply changed this small group of girls and will extend to all who attend conference this year. I couldn’t be any more excited about all God is going to do! Please don’t miss out!

I encourage you to do everything you can to get your cute self to Rockford this April 23-25, 2015.  You will not regret it. Something powerful and amazing happens when we take time to separate ourselves from the everyday normal and focus on Christ. Jeremiah 29:13,14 is a promise that is true for us today – “You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the LORD.

So, invite your girlfriends, mom, daughters and sisters and plan to attend Original Conference 2015 as we venture Past The Wishing… For details or to register, visit: www.originalconference.com.

See you in April!

Love, Jen DeWeerdt

xoxo

transitions, graduations, and change

Volunteering at Laremont School PTO Fundraiser

Change can be scary. 

Messy.

And not conducive to a type A personality like me.

So needless to say, I have been wrestling with my emotions as I transition at work. For the past decade, I have had the honor of walking through countless transitions with students.  And in a few weeks, I am finally "graduating."  In the midst of my personal transition, I have been thinking about all the lives that have intersected mine.

Goes kinda like this. We get a batch of freshman in.  They are so little. The boys have baby faces and skinny limbs. I can look them in the eye.  The girls are deathly insecure in their own skin, but come off as overly confident.  They run in pairs or packs like little puppies.

They are cautious. With me. With one another.

But we spend time together anyway.

We share a conversation or two, some laughs and a campfire.

And then slowly, it happens.

I am their leader. They are my students.

I fall in love with this awkward, gangly group of misfits.

I watch them make a host of mistakes that they could have avoided if they just would have listened…..

But that isn’t how we learn, is it?

So, I love them anyway.  

Watch them grow and mature.  

Cry a bit when they disappear. 

Cry a bit when they come back. 

Celebrate wins, grieve failures. 

Together.

And then slowly, it happens.

Friendship.

They discover where the line is, and stand right on it.

Some cross over it.

Some dangle on the edge of it.

Apologize their way back to the right side of it.

They ask questions. Good questions. Deep questions.

I try to point them to Jesus.

I meet their parents. 

And really like them. We realize we are on the same team.

Boys now tower over me in men’s bodies.

Girls are beginning to understand the power of theirs.

They love. They serve. They give.

They eat my food. Play with my kids. And TP my house.

And then slowly, it happens.

We become a little family.

They complain. They act too cool. They break down.

They endure pain.  Real pain.

They get their first battle wound from the world.

And their second and third.

So I sit with them. I walk with them. In the silence.

I speak light into the dark corners, cause they can’t quite see past it, yet.

They are busy constructing their first alter.

They decide if God is who He says He is. 

Even when they don’t feel it.

And then slowly, it happens.

They are my sons and daughters.

They keep me young.

I help them grow up.

I laugh with them.

I am challenged to be better from them.

I mess with them.

I cry with them.

I hold them.

I punch them.

I call them out.

I thank them.

I tell them who I see them becoming.

And then before I know it, it happens.

I graduate them.

It’s hard loving teenagers. 

It’s hard letting them go.

And then, it happens. 

I get a new bunch of misfits.  

The last four years, this particular group of misfits have stolen my heart.  These men and women have given me more stress and more joy than I can express.  I think the WORLD of them. They are not the next generation of leadership. They ARE leaders.  They are world changers.

I am going to miss them.

But before I know it, it happens.

They come back.  

They are young adults. 

College students. 

Married adults.

Parents.

And youth leaders.

And I am still, watching them grow and mature.

Transitions are messy. 

Oh, but there is such beauty in messy things.

March 1 will be my official last day.  Transition day, actually. I have the opportunity to stay at Immanuel in a new position that I am so excited about.  Thank you to Josh, for believing in me and giving me opportunities to grow in this position.  Thank you to all the leaders over the years, I love you all like family. You all teach me so much about servant leadership.  And, to my decade of misfits, thank you for allowing me to be a part of your story. I am humbled and honored.

And before you know it, 

transition happens. 

-STEFANIE

What transitions or changes are you facing in your life? 

I would love to hear about them! Post them here or on Facebook!

#transitionsonboycelane

how one family navigates open adoption with two different birth moms: A guest feature by Kate Demien

Mark, Kate, Lydia, and Eli Demien
Photo Credit: Rebecca Reale

Friends!

Thanks for stopping by today! 

I have been so excited to tell you the newest addition to BOYCE LANE….Friday Guest Features! 

We, by far, are not the only ones going from Type A to Plan B.  If fact, I think we all can relate.  Right? Think back to 16. Does your life look at all like you thought?  Reminds me of that Garth Brooks song: Unanswered Prayers. There is a line that says, “some of God’s greatest gifts, are unanswered prayers.”  I am so glad some of my dreams fell on the cutting room floor. 

Anyway, it didn’t take me long to realize as I started blogging more, that I am surrounded by people that are not just surviving this “new normal” but actually thriving.  Many of them are not bloggers. They are just humble, beautiful people that happen to sit on my couch once in awhile. So, you know me, I just had to see if they would share! Nothing like gently nudging friends out of their comfort zones! Ha! So, at least once a month when you stop by, you may find one of these wonderful friends sitting next to you on the couch.  My hope is that their story will encourage you in your own Plan B.

First up is my dear friend, Kate!  She has graced my couch more than I can count.  I love learning from her.  She is a great mixture of humor and wisdom, listener and story teller, and loyal until the sun comes up.  She’s not afraid of telling you the truth or licking your child's germs.  She is the woman you always pick first for your team, no matter what game of life you are playing, because you know you have a better chance of winning when she is next to you. And, she happens to be gracefully navigating her journey with two open adoptions.

So this week, meet Kate!

Kate writes:

5 years ago, my husband Mark & I shared the stage at Immanuel Church along with 4 other couples to discuss something we all were wrestling with….PAIN. More specifically…Where is God in the midst of life’s biggest storms? The Boyce’s had just recently received Jayden & Brooklyn’s diagnosis and just days prior, Mark & I had our 5^th miscarriage in a row.  We all were so vulnerable… so raw.  

I’ll never forget one of the worship songs that Sunday, “Savior.”  “You’re my Savior, Restorer, Rebuilder, Rewarder.  My Refuge, Redeemer, Defender, My Healer…Savior.  I stood there singing those words with tears in my eyes, feeling like God was so far away.

So much has happened since that day and it’s my pleasure to give you an honest snapshot of our adoption story.  Thanks Stef for the opportunity to share!

After a few years of marriage, Mark & I wanted to start our family.  We started with a plant, then got a dog and soon after felt ready to join the “kid club” like many of our friends.

That desire marked the beginning of a journey that brought Mark & I to our knees.  Over the next 4 years we had a total of 7 miscarriages.  We went to 3 different fertility specialists and endured countless tests, trying to determine what was causing each pregnancy to abruptly end after weeks of positive blood draws and increased hormone levels.  All of the testing came back normal. No doctor could give us a reason why, which made those years even harder to understand.  

Finally we were referred to a Reproductive Immunologist that specialized in recurring pregnancy loss and found out that I have a rare chromosomal mutation that causes my body to attack a fetus like a foreign entity.  After learning how much money and drugs it would take to help me sustain a pregnancy full term, we began looking at all our options, adoption being one of them.  

At that time, adoption seemed like a last resort, it meant I failed.  With each passing miscarriage I felt like we were getting closer and closer to “having to adopt” and that scared me.  Ultimately, God had to bring us through a journey to open our hearts to His plan…the best plan. 

We began our adoption journey in early 2011 having grieved, and ultimately accepted, that we would never have biological children.  After years of trying to force a square peg in a round hole, I waved my white flag and was ready for whatever God had in store. And surprisingly, I was relieved, because I was finally in a place of complete surrender.

After mounds of paperwork, hours of training classes and one failed adoption, we were finally matched with Lindsey.  She was 7 months pregnant, carrying a baby girl.

BUT…she wanted an OPEN adoption.  Uh oh…how open?  What will that look like?  Will this baby girl be confused and think she has 2 moms?  Will she regret her decision and try to get the baby back?  Will she just show up at my door unannounced? 

Everything changed when we stopped saying SHE and started saying LINDSEY.  She was a real person, going through the most difficult thing imaginable and God said…WILL YOU LOVE HER?

After giving birth, Lindsey questioned her decision and she struggled for weeks with her options.  It was a scary time but Mark & I knew our role, we needed to keep loving her.  Lindsey appeared in court and terminated her parental rights to Lydia on February 10, 2014 and in doing so made us parents.  It was the happiest day of our lives, but knowing it was the worst day of Lindsey’s life made it bittersweet.  

Lydia Ashley Demien was born on January 10, 2012 weighing 5 lbs.. 8 oz. and 18 in. long!

God answered our prayer a second time by sending us Samie through a long time relationship with my best friend Kathrina’s mom.  On a beautiful day in May, Kathrina & I, along with Lindsey, drove to meet Samie and her mother to discuss open adoption.  Lindsey was a rockstar, telling Samie how wonderful we really were and if she did choose adoption for her son, it would be the best decision she could ever make for not only him, but for herself too.  

Samie choose adoption to protect her son from an abusive birthfather and to give him the life he deserved.  I was able to be in the delivery room when Eli was born.  It was a gift witnessing those first moments of new life. It is something I will never forget.   Samie terminated her parental rights to Eli on July 24, 2014 and in doing so completed our family.

Eli Paul Demien was born June 28, 2014 weighing 7 lbs. and 18 in. long! Photo Credit: Rebecca Reale

Are we blessed beyond measure because of open adoption?  Yes.  But it doesn’t come without its share of ongoing challenges that continually remind me of those fears I had in the beginning.  

Maintaining relationships with two very different birth moms can be complicated.  Why?  I’m no expert but I’d say it stems from grief.  Some grieve privately and some grieve publicly.  Placing a baby for adoption is traumatic.  No two stories are the same. My job is to love these young woman and point them to Christ.  Some days are just challenging.  But with healthy boundaries and trusting God’s will, it’s worth it.

Today I am so proud to say I’m an adoptive mother of 2 beautiful kids, both in open adoptions with their birthmothers who I communicate with often and we see several times a year.  Our visits are sacred time spent making memories my kids can look back on and KNOW they are loved by so many.  

God choose OPEN ADOPTION for my family and has equipped Mark & I to thrive in it!  It went from being my biggest fear to my passion. My plan B to God’s best for me.

A couple Sundays ago Mark got a text from his mom that read, “5 years ago today you & Kate spoke on stage at church about your miscarriages” and guess what worship song was playing when he read that text?  

Savior.
[listen here] 

-Kate

Thanks, Kate for sharing! We all are so honored to get a snapshot of your journey. I know I have learned a lot about open adoption, and what a beautiful opportunity it can be for families! 

Friends, thanks for stopping by! Please feel free to share Kate’s journey with your friends! Who knows who needs to read this today!

-STEFANIE

taking out the trash: a garbage lesson on Sanfilippo

Ever heard of AV9?

Me neither.

Until Ohio. Until gene therapy headed into the neighborhood of Sanfilippo.

Last Sunday, we packed the kids, the strollers, and the air mattresses. We shipped Ellie to grandma’s and headed off on our seven hour journey to Columbus, Ohio.  We settled into suite 319 at the Ronald McDonald house and thanked God for a good car ride.  

After a sleepless night, we packed up the kids and crossed the street to Nationwide Children’s Hospital for our six month visit.  The two day visit consisted of developmental testing, physical ability testing, and a physical exam.  

The kids did great, all things considered. And, so did mom and dad.  I even think we laughed and smiled a bit.

To help you get a better understanding of Sanfilippo, let’s review. Jayden and Brooklyn were born missing an enzyme that is responsible for ridding the body of mucopolysaccharides.  Imagine your house represents your body.  Each week, (if you live in America) you buy food, eat it, and collect trash.  

Like wrappers.

Or old, rotten food.

Stinky diapers.

Basically things you don’t want piling up around your house.

So on trash day, you roll out your collected garbage to the curb for the garbage man.  When you get home from a long day at work, you grab your empty cans and roll them back and start the process over.  

Except on those holidays, right? 

Or those days that you forget to put the cans out.

And when that happens, the trash builds. It starts to stink. It starts to accumulate.  And over time, if the garbage man never comes, the trash begins to erode the very things it sits on. [think the tv show, Hoarders....yikes.]

Well, Jayden’s and Brooklyn’s houses don’t have a garbage man. There is no Mr. Enzyme coming to pick up the stinky mucopolysaccharides.  And so they sit.  In the brain and central nervous system and destroy it.  

And, as you guessed, if Mr. Enzyme never goes down their street, they get an eviction notice.  

Condemned.  

Outrun by trash.

Which is why the residents of Sanfilippo, and neighboring friends and family, have started a petition to get these darn kids some garbage pick up.  And this year, after millions of dollars, and decades of research and development, a garbage truck has been found that will fit down their street.  

Science shows it worked in mice models, essentially stopped garbage pile up.  As soon as Mr. Enzyme showed up, he began to empty the cans each week for those brave little rodents. 

We are still in negotiations about the old, piled up stuff. And, it’s still unknown what the condition of the yard will be after years of garbage sitting on it, rotting it away.  

It’s the brain, and there’s a lot we don’t know about the brain.  

And mice?  Well they are not humans.

Enter onto the scene: clinical trials.  Doctors are choosing a few “homes” to send the garbage man to so they can watch what happens.  

There is no guarantee the garbage man will be able to navigate the tight roads. 

There is no guarantee the grass will ever grow again.

There is no guarantee that the house will even know what to do. I mean, they have never HAD a garbage man before. Will they remember to take the trash out?

So, Ohio is essentially a tryout.  The natural history study is collecting data from 20 kids to see what neighborhoods will benefit most from getting Mr. Enzyme.  Did I mention there are many neighborhoods, and for a number of reasons, Mr. Enzyme can’t put them all on his route?  At least not yet.  Not until he runs a number of test routes and the bugs get worked out.

First cuts are going to happen any day now.  Parents are waiting. And instead of looking out the window for the garbage man, we are watching for the mailman.  He will be stopping by with a letter letting us know if we made the cut.  

Positive.

Negative.

Each kid in the study is being tested for antibodies.  In sticking with the garbage man story, it would like the home has no road access for the garbage truck.  The house would actually attack the garbage truck upon arrival.

Clearly, they are not going to send Mr. Enzyme and the garbage truck to an ambush.  

So we wait.

Positive. We are out.

Negative. We pass the first cut.

To be honest, there are more questions than answers. There are more unknowns than knowns about the study, gene therapy, the body, the brain, and the benefit it will have, if any, for Jayden or Brooklyn.  

They may have too much trash.

I believe with all my heart that in the next decade, every house will get a garbage man.  There will be prenatal testing.  And, if a newborn is missing a garbage man, with a quick shot, they will get one. Forever. There will never be a week that goes by he doesn’t show up.

Even on holidays.

And, AV9? 

It's the model of garbage truck, I guess.

Click on the link to learn more about clinical trials: NATIONWIDE

Click on the link to learn more about Sanfilippo: MPS SOCIETY

#tbt post 2: Sweet Voices

Jayden and Brooklyn spend a ton of time at doctors offices.  Days of being weighed, touched, poked, and tested.  In fact, we just got back from participating in the Natural History Study of Sanfilippo being completed in Columbus, Ohio.  We started in July and this was our six month check up.  I am sure you all want the details because the doctors there are working on gene therapy-a potential cure/treatment for children with Sanfilippo. I will write more in an upcoming post, but I didn't want to miss Throw Back Thursday!

Enjoy a #tbt post from 2011, and a sweet video from around the same time.


August 22 Let’s get physicials, physicals….

Jayden and Brooklyn (and Ama) went to get physicals/annual check-ups at Lake Forest Peds. What an adventure! It was a rough one with both the kiddos bouncing off the wall! We did shots and the regular height and weight jazz. They really don’t ever tell us anything we don’t already know, in fact it is me usually educating the dr. about the latest visits to Chicago or U of Minn. Overall, we really like Dr Terkildsen (wink wink, Katie!) and feel a special connection to him because he was perceptive enough to get us down to a genetic counselor early in the game to get a diagnosis for Jayden. So, I am pleased to announce….no news, routine appointment!

2015 notes: In the video, we just picked up Brooklyn from visiting Rockford.  I love hearing Jayden say, "Beeba." Routine has become such a treasured word in our family!

#tbt post 1: Jayden

To all my readers:

Thank you so much for taking the time to read and share my blog! I am overwhelmed by the number of comments, likes, and shares.  Your words are such an encouragement to keep writing!  

Some of you have followed me since my first blog post, but many of you have stopped by more recently.  My goal is to get a new blog post out every Tuesday morning.  And, in light of #tbt [Throw Back Thursdays] I am going to post a blog from awhile back every Thursday.  (For those of you that don't know what TBT is, it is when people post a picture of something from a long time ago, like when they had braces, or an old wedding photo, or an embarrassing childhood picture on social media.) 

It's funny. I thought this would be a fun adventure,  but quickly realized after looking for a "first TBT" post this was going to be an emotional ride.  With a regressive disorder, things looked a lot different back then....

So, welcome #TBT!

OCTOBER 06, 2009

Hello!
I wanted to give everyone an upate on Jayden.

We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden's liver was enlarged. He bagan to be concerned about if all these "unrelated" things would add up to a genetic disorder and, after today we think he is right.

We saw a genetic dr. at Children's memorial and he thinks Jayden (and possibly Brooklyn if it is the more severe type) has mucopolysaccharidosis. He is having testing done and the types he thinks Jayden has is Hurler syndrome which effects boys and girls OR Hunter syndrome which effects just boys. Regardless, it is a genetic disorder on the X chromosome. It is a progressive disease that currently has no cure. We have just done the testing (blood and urine) so that is all we know.

Right now, Jut and I are a bit of a mess. The life expectancy is 10-50 years old, and although there is treatment it sounds like a slow, painful, early death which we are not even trying to think about! We are really trying to not get worked up until the test results are back. Please just pray for our family, and our little boy. God is a big God and loves Him even more than I can imagine! That is a hard reality now. Jayden just saw me crying and with his bright smile wiped my tears. This is all so fresh so sorry for the bit of emotional breakdown!

(2015 update: Hurler's is not just on the X chromosome...but we didn't know that. At the time, they were not even considering Sanfilippo.)

Grass is greener

Do you ever have moments where you don't like your life?

Or moments you don't like who you've become? 

I just want out.

I don't want a husband.

I don't want kids.

I want to work in a pub outside of London and smoke cigarettes. 
I want to wear a faded vintage t-shirt, sequin skirt, and boots.

Alone.

I am sick of the routine.

Sick of the caregiving.

Sick of the burbs and all that comes with it.

Sick of responsibility.

Sick of the hitting, the diapers, the spills.

Sick of the same conversations, the same questions, the same dates.

I want to run away.
I want a re-do.

You too?
Maybe it’s just me.

It's hard writing those thoughts.  It’s like flashing you with my naked emotions. 

Do you have thoughts that you would rather the world not see?

I am ashamed and embarrassed of mine.  My mental tape plays back like this: "You have so much to be grateful for, Stefanie. You are such a bad wife and mother thinking those thoughts. Justin and the kids deserve someone so much better."  Shame tells me, "keep those thoughts secret. Hide them. Deny them.  Only share things that make you look strong, happy, or Christianly."  

But, try as I may to hide, these thoughts are in me. They make me understand why people leave their relationships, their families, their jobs, their lives.  Why people quit trying. Why people run.

The longer it sit here, processing these thoughts, the more I realize that it’s ok to acknowledge these moments for what they are.  Just moments.  They are not how I think all the time. Not even most of the time. And, I think my mental tapes lie. I don’t think thinking these thoughts make me a bad wife or mother. They don't define me. I think what I do with these thoughts determine that.

Once I acknowledge these moments, God gets to work.  As I bring these secrets to light, He starts transforming my mind.  I love that. 

Have you heard that phrase, the grass is greener on the other side? I think we all entertain our “other side” once in awhile. 

That new place.

That new relationship.

That new city.

That new job.

The other side is a really dangerous place stand alone. Secrets grow when they remain hidden.  But if we have lived life long enough, and wandered over to another yard, even just to look....we learn that the grass is not greener on the other side, it's greener where you water it.   

Here’s the painful truth.

Those moments?  Those thoughts I have about running? 

They are all about me.

Me, myself, and I.

They are selfish and prideful thoughts.

And, they really are a lie. Evil desires, even.

They are not what I really want, they are what I want in the moment.  They don’t put God first or people first, they put me first. I mean, its harder to stay and work on your own yard sometimes, isn't it?

God gently reminds me, as well, to be grateful. One of the blessings of Sanfilippo taking up residency on Boyce Lane is that we constantly get to think about the people we love being gone.  We have a father time ticking away reminding us that one day, it won’t be this way.  That these moments, this grass, will soon be gone.

Justin has a green thumb.  One thing you will see him doing every day there isn’t snow on the ground is weeding.  And no matter how many weeds he picks a day, he always finds more the next day.  It is a daily process of finding them, exposing them at the root, and removing them.  

And from observing him, it looks like weeding sucks.  It takes time.  It hurts, bent over on your hands and knees.  And those roots are hard to get out.  If left unmanaged, they spread. They kill your grass.  

And so I have come to the conclusion, I need to weed. I have to take captive my selfish thoughts, expose them to Christ, and remove them.  I have to get on my hands and knees and get to work. Daily.  

And I need to water.  I water my life by being grateful for everything God gave me. I am grateful for the people I get to love.  Grateful for the moments, even the painful, not so green ones.

Caring for my lawn is to take an honest look at my grass.  Part of acknowledging these thoughts is also to say honestly that I need alone time.  I need to break the routine once in awhile.  And, when I am having these thoughts frequently, it's time to take a breather.  And maybe buy a vintage t-shirt or t-shirt, but I don't have to run away.

And that is ok.

The grass really isn’t greener on the other side. 

The grass is greener where you water (and weed) it.