New Member of Team Mathias

Dan and I would like to share some very exciting news- we are expecting a new bundle of joy in November 2013!! Our due date falls on the day of our annual Chunky Monkey Run, November 2nd. What a neat way to welcome the newest member of our family.

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Being pregnant with Baby Koch, sweetly nick-named Baby Butterfly by Emerson, has been an emotional time. I love being pregnant, but more now then ever I realize that life is a true miracle. Dan and I pray daily for our little one as it is often hard to keep fear at bay, some days are easier than others. Although we know that having another baby with MPEI is rare, it is a fear we live with. Despite the fear we felt that adding to our family would bring many blessings. The boys are excited to meet their baby brother or sister. Samuel would love a baby sister and Emerson has informed us that one girl is enough. The things kids say, lol.

Mathias is never far from our thoughts and he continues to live through us each day.

God Bless,
The Koch Family

Gift of God- Poem

Christmas is just around the corner and I would like to show you a poem through pictures that I am so very thankful to have of my little Mathias.  This anonymous poem was given to me from a nurse that cared for Mathias in the hospital and it has deeply touched my heart.  May these words bless you as they have blessed me.

Gift of God

Once upon a special day…
In Heaven up above…
the tiniest souls sat at God’s feet…
Surrounded by his love.

The time was coming, very soon…
God said- “Do not be scared”…
your family awaits your arrival…
Now let us get prepared.

And so, God looked upon these souls…
In mute consideration…
He knew the life each one would live…
He weighed each situation.

Mathias Belly Pic

 The souls chatted amongst themselves…
And wondered who they’d be…
They knew the day grew closer-soon…
They would meet their family.

How would you like to change the world?
God asked each soul in fun…
The chance to make a difference…
is held by only one.

mathias newborn 3
I’ll remind the world to sing…
A sweet little soul told the Lord…
I have a beautiful voice…
I can hit every note, every chord.

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You’ll have the voice of music then…
a voice-lovely and strong…
Share your gift with others…
And let them hear your song.

Our Precious Mathias

I’m going to make the world laugh…
One soul said with a smile…
For laughter heals a broken heart…
And helps us through each trial.

Mathias and his charming smile

Then take with you the brightest smile…
And share our laughter well…
The soul thanked God immensely…
And down to earth he fell.

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I will show compassion…
The next little soul raised his hand…
Some people only need a friend…
Someone to understand.

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Compassion is a good thing…
God said with much delight…
To you- I will give mercy…
You will perceive wrong from right.

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And so each soul, shared every thought…
Their plans, their hopes, their dreams,
As God explained that life- it is…
Much harder than it seems.

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And as each soul began to leave…
In a scurry of laughter and fun…
Heaven became quiet…
Left- was only one.

mommy and 3 boys sept
Come site with me Mathias…
God said with just a sigh…
Do you know how many you will touch…
in a world left wondering why?

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From the moment that your life begins… you-will know of strife..
But you will teach those who know you…
to cherish the small things in life.

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And some may only know you…
through a simple photograph…
They will never hold you in their arms…
or memorize you laugh

Some may only know you…
through the words they read each day…
But you will do something wonderful…
You will make them stop- pray.

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Mathias-raised his head up…To touch God’s firm strong hand…
Father-I am ready…
For the life that you have planned.

And I will do the best I can…
without a word or deed…
For you Lord- are the planter…
And I will be your seed.

mathias at hospital

Mathias could hear many praying…
Although they had not seen his face…
They were praying for his safe arrival…
They were asking for mercy and grace.

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What talent do I leave with Lord?
What gift do you impart?
All that you will need God said…
I’ve placed with in you heart.

And God kissed Mathias Knowing all that he would be…
And whispered as he watched him go…
You will teach them- to see Me.
-anonymous

mathias feet purple

Pictures courtesy of Crazy Daisy Photography &  Photographs and Memories

Planning for the Chunky Monkey Epilepsy Run

Online Registration is now open!!

The Chunky Monkey Epilepsy Run is becoming a reality!  The road to this point has been full of emotional moments, both sad and happy.  We would love to have you join us at the 1st Annual Run- walkers welcome! 

Family Registration:  https://chunkymonkey.webconnex.com/familyreg

Individual Registration:  https://chunkymonkey.webconnex.com/onlineregistration

 

 

The 2012 Tally- Team Mathias Donation Challenge

The Madison to Chicago Ragnar was an experience that took 11 teammates and myself on a 200 mile journey, running over country roads, trails in the dead of night, and city sidewalks. 

Rewind… that made it sound crazy! 

Truly it was exciting, fun, tiring, emotional, and tough, but it was worth every mile.  

Mathias lives on in each one of our steps.

Our efforts are making a difference for families that struggle with epilepsy right in our very own backyards.  Despite how common epilepsy is and the major advances in diagnosis and treatment, epilepsy is among the least understood of chronic medical conditions. The Epilepsy Foundation- Heart of Wisconsin provides services for families and the community at large, including providing education for the local schools and emergency medical services.  With that said I would like to share what you have helped us raise in the fight against epilepsy!!

Total Raised

$2070

 

We set the bar high with a goal of $3,000.  We didn’t quite make our goal, but that is okay, because each dollar that we raised will make a difference.  Thank you to everyone that donated for the challenge this year, we will continue to change the face of epilepsy!! 

 

Next project…Ragnar Recap-Team Mathias 2012 Challenge Post!!

It could be worse…

Stop.

Put on your shoes…no, not your shoes, but the person you are about to say this to.

Listen.

What did you hear?

My heart is overflowing with sadness as I reflect on three families in my community that have had to say good-bye to there little ones within the past month. One mom will not have the chance to hold her baby’s hand this side of Heaven, and two families were able to hold their baby, but will not hear their precious voice this side of Heaven for the babies were born still.

As you read this today, you more than likely know someone who has recently lost their little one and maybe this loss has even affected you personally. The hole that that is imprinted on each parents heart from the loss of their child does not magically disappear.

What do you say to a parent that has just lost their child and all of the dreams and expectations that come with a joyous addition to the family.

Here is a statement that I often hear and/or see written to families that have just endured heartache and loss: It could be worse.  At least you still have your beautiful children at home. (spoken in love)

I cannot speak for others, as each person that has loved and lost will grieve in their own way, so for the remainder of the conversation I will personalize.   Althought spoken with love the person you are talking to has a broken heart and one side effect that often comes with grief is that sometimes finding our next breath is difficult, sometimes it hurts so bad that being swallowed by a black hole sounds inviting.  It truly is a blessing to have beautiful children that are here in the present with us, but that in no way lessons the void created by loss. 

I have lost both a child that I wasn’t able to hold and buried my son and honestly they are two of the most devastating times in my life. Each type of loss brings with it a different type of sorrow.  Losing my baby at 16 weeks gestation brought with it much sadness, many questions and a longing to know the little person that grew inside of me.  To this day I can tell you how old my “baby” would be, the details of the pregnancy and the excitement and expectant joy that filled my heart as I anticipated meeting her.    

Losing Mathias brought a different level of sorrow that I had not previously known.  My grief was different, because I had the privalige to be Mathias’ momma here on earth for 7 precious months, but that does not make the pain of losing a child I did not know any less valid, just different.  Society often puts expectations on the process of grief and in many ways this only makes grief harder.  When someone reminds me of the children I have, I cry inside, because each child means the world to me.  Please know that I love Samuel and Emerson with all my heart and if I lost one of them it would be completely devastating, and that pain would tear another hole in my heart.  Loss hurts, no matter which way you spin it.  

Grief is a package deal; I am learning that the pain, confusion, anger, and depression come in different waves with varying intensity and it is okay to experience each in its entirety.  It is easy to put up a strong front, but if I allow myself be in the dark place and let my tears fall, each tear represents part of my brokenness.  As God catches my tears and places them in a bottle (Psalm 56:8), healing begins one tiny tear at a time. 

 

What is the answer to the age old question of what to say? 

Sometimes silence is what we need, no words needed.  Silence is difficult and it makes many uncomfortable, but it truly means the world to know that we are loved and cared for, and that it is okay to grieve.  Yes, many of us have our children still here with us and we love and cherish them, but it will never erase the hole in our heart for the children that we miss, no matter if we hold there hand for one minute, 7 months, 40 years, or only dream of the hand we never held. I still cannot fathom why it happens, but I am thankful that I will see my babies again in Heaven. 

Hugs to all of the moms and dads who are missing their little ones ♥

Many Charities, Little Money, Why Help?

Deer in the Headlights look…

This question posed to me in an interview threw me off guard and I stumbled with my answer. 

 Why should someone help Team Mathias raise money? 

 It is a heartwarming story:  a mom lost her son and has made it her mission to change the face of epilepsy in her sons memory.  That is a nice story, and I like to hear it, but why should my hard earned money go to the charity of her choice.

Take a moment and remember the time when you had life figured out.  The memory I have of that time brings me back to my youth, shortly after high-school graduation.  The world lay at my fingertips and I took the plunge.  World here I am, watch out!  My first steps out into the world of reality were interesting, exhilarating, and educational.  I still find life to fit those three words, but my perception has changed dramatically.  This world has a way of bringing us to our knees and it is on our knees that we remember to look up.  It wasn’t until my childhood dream was taken from me that I even realized that my knees were not merely for our physical bodies, but our spiritual life as well.   Have you been there?  My knees have become well worn and the little I have learned has taught me that the journey you are on can change, without permission. 

The majority of difficult moments that brought me to my knees were life changing moments that tested my faith and rocked my world, but in a way that affected me and 1 or 2 other people.  When Mathias passed away epilepsy not only rocked my world and challenged my faith, but it was epilepsy that robbed me of my son.  My passion is NOT about asking for money- it’s about changing the world. 

Imagine being on vacation with your perfectly healthy family and a seizure takes hold of your precious 5 month old baby and you stand there helpless.  You rush to the ER and hope beyond hope that he will be okay.  It turns out that his seizures are very serious and you must be flown to a local hospital for further treatment.  I know many of you reading this know that seizures are rarely as serious as what Mathias went through, but let’s just say that after a long fight at the hospital you are able to go home with medicine that allows your son to participate in family activities and go to school.  But does epilepsy end there? 

No,  epilepsy is there and at any given time a seizure can break through.  Will his classmates or someone in the general population know what to do in case of a seizure?  Will they know the steps to take to ensure safety for your son?  Will your son be able to go to camp like his classmates, without medical supervision?  Will your son be bullied or left out because he is different?  I hope that none of what I have just written will ever be the case for you, but for many families that are effected by epilepsy it is a daily battle.  Epilepsy will affect as many as 1 in 26 people and yet is a little understood disorder.  It is hidden in the shadows and surrounded in fear.  A cure for epilepsy would be wonderful, but before a cure can happen I strongly believe that education will be the first step in changing epilepsy. 

So, along with my heartwarming story there is deeper need and without a voice, epilepsy will remain in the shadows and people will continue to fear what can be changed. 

 

 

Team Mathias- In the News

This is an article that will be published in our local (Argyle) paper next week!!  I can’t believe that our race day is fast approaching.  We will also be putting a post race article in a couple of papers. 


Changing the Face Epilepsy

Team Mathias 2012 Challenge

The Why Behind our Team

Many of you reading this today have helped us through a parent’s worst nightmare…losing a child.  Our Team was created in memory of our son, Mathias Lee Koch.  When Mathias was diagnosed with a rare form of epilepsy we were heartbroken, but ready to fight the disease with all the tools available.

Mathias’ battle with epilepsy began in September 2010 when Mathias was just 5 months old. The doctors were not able control Mathias’ seizures through medication. As a parent it is agonizing to watch your child suffer and know that you are helpless.  Mathias lost his battle in November 2010, yet it cannot erase the imprint his fighting spirit and enduring smile had on this world. Mathias was a fighter and we would like to continue the fight for him.

Our Challenge

RAGNAR is a team relay race that starts in Madison, Wisconsin starting on Friday, June 8th, hopping the state line and ending in Chicago on Saturday June 9th. This running event will push the 12 members of Team Mathias, day and night, through 200 miles of stunning scenery in the upper Midwest.

Starting in Madison, the team will head southeast toward the southern tip of Lake Michigan. The race will wrap up in the ‘Windy City’ – Chicago, Illinois.

“Be the Change you wish to see” ~Mahatma Ghandi

Life as we knew it changed in an instant.  Epilepsy is a disorder that affects 1 in 100 people and is a spectrum of disorders that includes over 40 different syndromes and types of epilepsy with many different causes.

We would be honored if you would join with us and The Epilepsy Foundation of Southern WI to help families throughout Wisconsin who are dealing with the obstacles that seizures bring to their lives. Proceeds from the 2012 Team Mathias Challenge help support medication assistance programs, scholarships for our Summer Camp for Kids with Epilepsy, and educational and support meetings.  Donations will be accepted at Woodford State Bank c/o Team Mathias- PO Box 40 Argyle WI 53504 or online at  teammathiaschallenge.com 

♥ Thank You and God Bless ♥
The Koch Family
Dan, Mandy, Samuel and Emerson
Forever in our hearts- Mathias

Mother’s Day 2012

 

I have so many thoughts that are tumbling around in my brain yet none of them sound sensible.  Mother’s Day has passed and the delay in writing is because my fingers don’t know which words to write.  I feel that each post is filled with such sadness; what I want is for joy to flow from my fingertips so that I could be uplifting to others, but I do not think I am there, no matter how much I wish.  Thank you for taking the time to read my blog, it seems each time I write a post my heart heals a little more.  I know that it will never be complete again, until I see Mathias in the glory of Heaven, but for now it is all I can hope for.  I would never have expected writing to do that…

My Mother’s Day

The morning started bright and early, as the clock struck 6:30am, Emerson was wondering where his pants were, lol!  Sometimes you can’t help but smile.  Samuel spent most of the morning taking one of his treasured Thomas maps and making me a present with it and Emerson decided that he had already given me a gift “the udder day.”  The boys planted Strawberries for my Mother’s Day surprise that came a few days early because they couldn’t keep it a secret.  Love Strawberries and Love my boys.  Then we were off for a cook out to visit with family.  Then home for a 9 mile “mommy time” run followed by watching the sunset with my boys and Dan.  A day full of many blessings.   Although the blessings abound my heart still aches for the son that was not here to give me mommy kisses on Mother’s Day.

Empty arms on Mother’s Day

Mathias is not here with me today, and I am a broken woman.  I never dreamt that a day honoring mothers would feel as incomplete as it does as I write this today.  Shortly after Mathias passed away my grief was raw.  I could feel the impression of his body in my arms and smell the lotion that he wore, and picture every feature of his beautiful face.  My arms felt heavy, because he wasn’t cradled up next to my heart.  I couldn’t walk into a room without his full presence embracing me, now my arms are empty.  It is harder to remember the feel of Mathias when he was curled up next to me, the clothes that I had sealed up to forever catch his smell is gone, but that isn’t even the worst of it…when I try to trace his beautiful face I cannot always see him, his every feature.  I have no idea if my words can even begin to touch on the depth of my grief as I tell you this.  Never in my wildest nightmares would I have thought it possible to lose touch, it makes me almost miss the beginning stages of my grief because he was so real and now I cling to my memory and hope it doesn’t fade.  My arms truly ache.  

I only share this with you because it is real.  I realize that I have many blessings here with me now, including two of my precious boys and my dear husband, but there is a part of me that struggles to breathe.  I am thankful to God for each and every blessing and altough my suffering hurts I believe that there must be a reason that my family has been led through this living Hell.  My memory of Mathias is always with me even though I can no longer trace each feature.  I know that he is within my heart no matter how far he is from me.   Without Christ I am nothing..I am so very thankful that Christ took our place on the cross and has given us a way to Heaven where I will see Mathias again.

 Always Together…Never Apart

 

Butterfly Kisses

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My recent posts have portrayed the depth of my sadness, but sadness is not the end of the story, just a part of the journey. 

 I am a runner.  Running is “me-time”, away from the stressors of life.  While running I can think of nothing at all, I can escape into another world by listening to a book, or  I will use the time to sift through my thoughts and pray. 

Running is a safe-haven. 

After last week, I was in terrible shape: my eyes were sad, my heart was sad…I was for the lack of a better word, sad.  I went out for a run because I had too.   You see, I am training for the RAGNAR and my distance is a total of 20 miles, so if I don’t run then I will be in for some serious hurt.   Yes, I did say that I love to run, but there are days when I dislike getting my lazy bones out the door. 

My Sunday morning run:  I will try to capture the words to show you what is forever ingrained in my memory. 

I struggle to put on my shoes, for what I am sure will be a tiresome and long run.  Ok, shoes are on.  I.am.SO.tired…maybe I should go back to bed.  Tempting, oh so tempting, but I should really run.  Ok, I step out the door.  Oh man, I forgot my water…hmm, maybe that means I should’t go.  Ok, fine, I’ll run! 

I am out the door and down the street when I hear two little voices hollering out the door “Bye, mom!!  I love You!”  (Heart Melts)                                                          

About 3 miles into my run I rounded a bend and turned onto a gravel road with lots of trees and woodsy plants, and I saw a Painted Lady Butterfly.  (Smile)  I love to see butterflies, they lift my spirits.  A few steps further and about 20 butterflies fluttered past me.  My step felt lighter, my heart less heavy and I gave thanks to God.  Not more than a few steps later another family of butterflies fluttered past.  I slow to a stop to take in the scene.  

 I have just been sent butterfly kisses from Heaven.

The remainder of my run was easy, feeling light hearted helped my legs and feet run like the wind, well, maybe not quite that fast.  I ended my run at Mathias earthly resting spot, where his picture is engraved so beautifully, and I rested.  I rested, with Christ’s arms wrapped around me.

 ♥Butterfly Kisses ♥

 

Sending Hugs to Heaven

Everywhere I turned today I was hit with emotions that shook me.  Most often I fail when it comes to expressing my sadness, I tend to hold it in and then- BAM!  It doesn’t matter how much I want  ”not to cry” my heart says no more and the floodgates open.  Today was one of those days. 

Lack of sleep doesn’t help.  

The day stared off quite normal, which is fine by me.  I like consistency.  Before I knew it nap-time was upon us and wouldn’t you know it, but all of the kids laid down at the same time.  It is always a blessing when that happens.  I pull out my books to study for a short while and decide that I had put enough new information into my brain and decided to pick up a book, just for fun and allow myself to decompress.  It was a new book that sounded intriguing.

Mommy, I Wish I Could Tell You What They Did To Me In School Today

by Richard S. Stripp, Sr. 

Not one I would normally pick up to read, but it had been recommended by someone on an epilepsy site that I follow on facebook, and the description tugged on my heart, and I now own a copy.   One of the little boys in the book, Noah, had been diagnosed with mitochondrial disease and it shares his story.  At the end of Noah’s story it talked of how his mommy told him he didn’t have to fight to hang on…he could let go.  And when he did quit fighting his last thoughts were: 

Bye Mommy.  Thank you.  I love you.

That was the moment my tears started to fall.  It brought me right back to when I was with Mathias in the hospital, as everyone’s hope around me dwindled.  It was me that wanted to fight longer and hold on tighter.   So I cried; the quiet I can’t breathe kind of cry.  The one where your body cries louder than your voice…and the tears keep rolling down your cheeks no matter how you try to stop them.

And I must tell you…

During my time of tears everywhere I turned Mathias showed up in big and mighty ways.  I received a beautiful card from a dear family member and an email showed up talking about someone putting on an epilepsy training in memory of Mathias. Both made the floodgates open again.  Fast forward a couple of hours…another family member brought up another fundraising idea for the Epilepsy Foundation. 

God is so faithful.  On many occasions when my arms feel empty I look to the Heavens and ask God to give Mathias a hug for me. 

Thank you to those who lifted my spirits today, without even knowing that I needed you.