Thursday, September 20, 2012

{more than awareness}


Did you know that this week in September in Mitochondrial Disease Awareness week? Most likely the answer is no -- not because you choose not to care, but rather, like so many other rare diseases you’ve just never been exposed to this life -- this reality.

I remember back in 2005 when my little girl Madison was born.  My world was filled with nothing but thoughts of my sweet baby and the life that she would live.  I loved watching her grow -- hitting her milestones and making mommie and daddy so proud.   I never realized that while we were living in our healthy world other parents were watching their children die. 

 It’s a harsh reality.  When you enter the world of degenerative and terminal disease, it’s like stepping in an alter reality -- where everything that you once knew to be right and logical, somehow gets turned around.  It’s a world filled with suffering, dreams never fulfilled, and futures never lived.


In 2008, when our son was diagnosed with Mitochondrial Disease it was sadly to late.  We were told that the disease had progressed to the point that there was nothing more that could be done.  Our team of doctors switched focus over from searching for some kind of treatment that would work, to giving our little boy the quality of life he deserved -- this sadly meant that his life would soon end.

On November 8th 2009, we watched the Mito take over his little body.  Although nothing can take away the pain of loosing our sweet Gavin, the thought that our son was no longer fighting this horrible monster brought peace to our heart. 

The monster of Rare Disease is big -- bigger than any child or adult should ever have to fight. Gavin was 3 years old.  Before I entered this crazy life I never realized that doctors actually utter those words, “there is nothing I can do.”  Most of us assume that if we take our children to the Hospital they will be fixed.  Sadly so many cures are yet to be found.


“There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for our country’s children.”

But there is hope.


So here's the deal. Of course I want the world I live in to be free from horrible diseases like the one which took our sweet Gavin away. But what I want even more is for people to have hope -- to find hope. The real deal kinda hope that only can come from knowing that although we may never understand why horrible things happen to good people, we can find joy in knowing that each child and person here on earth carries with then a God given purpose to change our world for the better.

Go hug your healthy kid -- Thank God for the life he has given you to live and pray for the families dealing with this horrible disease. 

Tuesday, September 18, 2012

{free falling}


I remember going to Walt Disney World as a little girl and going on my first roller coaster -- Big Thunder Mountain. Basically, the story line of Thunder Mountain is that you are riding in a mining car and all the sudden the car breaks loose and becomes a run away train. All I remember was that to my little eyes it looked massive and maybe a bit deadly.  I understood the concept that I wasn't actually riding on a run away train, but to me it sure did feel like I was about to take the biggest risk ever -- of my entire life -- all seven or so years.


I remember my mom insisting that I go on, despite that fact that I was in full blown tantrum mode by the time we reached the front of the line.  I can still feel that not so gentle motherly push digging into the small of my back, pushing me onto the ride.  It was the scariest moment of my life. Little did I realize that my mother understood the joy that would soon follow after I walked off that ride.

I loved it.

I loved every second of it.

But that first step was so hard.  So very hard.  


Not soon after the start of this year Adam and I got in line for our Big Thunder Mountain.  We left everything that felt so comfortable and easy at our home church and took off into the unknown.  We never fully understood why we left our church, but we just knew it was time.  Once we found our new church home -- that's when it happened.  It was time for the free fall -- the thrill that coaster riders live for.  That crazy excitement that when you step off the ride it leaves you begging for more.  


Looking back over the past nine months it is very clear that we made the right choice -- that somehow amidst the chaos and noisiness of life we heard His voice, we listened and now we get to enjoy this ride. It's pretty darn amazing when you get it right -- after all, we all know that's easier said than done.


We have found our fit.  We have formed relationships that go beyond hello, but sink deeper to levels that enable growth.  Our kids have found their fit and so many people have found there place loving our kids and being apart of the miracle God is doing is their lives.


God is so faithful.   

He never has led us astray.  

Thursday, September 6, 2012

{The Dance of Release}


Parenting is a journey like no other.  You can never fully plan out your parenting journey.  It always makes me chuckle listening to new parents talk and stress over their birth plan and listen to their already firmed up views on parenting and discipline -- they really have no clue about what is about to totally rock their world and ways of thinking.  Once we as parents figure our children out -- perfect our skills and our ability to meet all our children's needs, they change, their needs change and what once was a full proof plan completely blows up in our face.


I have found the most challenging part of parenting is excepting the fact that my job as a mother is not only to hold tight but also to release.  So very difficult. I try to think of it as this amazing beautiful dance, a dance between parent and child.  The first thing you notice in a dance between two people is they way they hold each other -- the way the move together.  They glide across the floor playing off even the smallest of their partner's movements.  But here the thing, what makes a dance good is not only the way they hold each other but also the way they release.  Just think about it.


This week we sent our little girl to preschool.  I never thought this day would come for Angela.  I remember when we first brought her home I never really was able to picture what her future would be like, what her abilities and strengths would become.  She was so deeply involved in self stimulating behavior that it was hard to even imagine her interacting with the world around her.



So yesterday as I walked her into that preschool building my mommie heart wanted to hold her so very tight but my soul knew that we have come to this time in our beautiful dance -- a time to release. It is time to trust that just like I, her mother, loves her with the deepest of human love, that God loves my little girl even deeper and is waiting to help my baby twirl in her own amazing little dance until it is time to rejoin my arms once again.


She is ready.  She has been practicing her dance moves for two amazing years -- and trust me, this girl has some sweet moves.  I'm so excited for her to shine, grow and experience all that life has to offer.  Sure there are risks, but without risk there is no adventure and without adventure we can only taste just a small portion of the amazing life God has for us, for our children.


It's time to dance.

It's time to release.

It's time to watch my baby girl twirl.

Tuesday, September 4, 2012

{mind bowing perfect}


It is hard to believe that Jayden has been home with us for only eight months.  I feel like he has been my baby boy forever.  I was remembering back to over a year ago when I first saw his little face featured on our local new station's Wednesday's Child feature.  My heart both broke and leaped for joy as I watched the story while sitting on my living room couch.  I knew the moment his beautiful face came on that screen that he was my baby, I had no question about it.  But how? The timing wasn't right, we had just brought home Angela.  I tucked this little boy away deep in my heart until in a miraculous turn of events we were able to bring him home just about one year later.

God timing is perfect. Seriously, mind blowing perfect.


So it's been eight months since we brought him home and I hardly remember that little boy we first met.       Remember that post when I said that Jayden was just on the edge of something big?  I totally believe we are finally crossing over that edge that has kept him so bound and enjoying the freedom the other side has to offer.  Just look at these photos.  They are just a glimpse into the amazing healing we are so excited to witness first hand.  Look at his face, look at his smile -- Jayden has begun to interact with us in ways that blow us away.


Jayden and I sat on the couch the other day and had a five minute time of play.  Going back and forth with a game of Mommie pokes Jayden -- Jayden pokes mommie back and laughs.  This is obviously a skill that babies learn at a very young age, but Jayden is different.  Although I believe inside, his mind he has always understood the world around him, he has never, until recently been able to fully come out of his damaged brain and really play.  


Jayden has been scooting over to Angela and initiating little conversations of grunts and touches.  Again -- totally freaking amazing.  I remember the day when we had to put Angela high up off the ground to protect her from Jayden and his lack of safety awareness when it comes to other people and himself.


I remember the day when we would hold Jayden and he would grab our hair and shake it around without any concept of its inappropriateness.  Now Jayden calmly lays in our arms, gives the biggest hugs in town and even leans in and gives us big sloppy wet kisses.


In our get rich quick society we want and expect everything fast. Dare I say this often seeps over into the church.  We expect everything from God right away in a big boom -- poof you are healed kinda way.  Don't get me wrong, God can totally do that when he chooses.  But sometimes the process is slow -- but it doesn't make it any less amazing. Don't discredit the healing just because it isn't happening at the speed our American human minds craves.  

I'm in love with this child.  I am humbled and honored to watch his miracle happen.  Slowly and with perfect precision and timing.  

God's timing is perfect.  Seriously, mind blowing perfect.