Hero Challenge #2 – Let Your Light Shine

We are excited to launch the 2nd hero challenge!

We were overjoyed by the response last year (click here to see some of the special things that took place…)

The challenge is this…to honor and celebrate Landon and Nolan, and to make the world a little better place in the process.

These boys.

Our boys.

The boys who “can’t”, perhaps “won’t”, and according to some, almost “weren’t”…are my heroes.  They have inspired so many and yet as of today they are capable of little more than love.

So imagine what YOU could do.  Those of us who CAN, WILL, and ARE…how much more can we accomplish?  Especially if we work together?

My request is simple…go be a hero.  It may be a big gesture or a small one.  One that is known, or one that is done in secret.  You can deliver a meal, pay a bill, lend a hand, or simply provide a shoulder.  Just do something kind.  Something good.   Then tell us about it.  You can comment on this post, post a status or photo on facebook then share it to twoifbyfaith or tag @twoifbyfaith on your instagram photo. You are encouraged to use one or both of the hashtags below. I will compile the good deeds, and display them in a special way at the birthday party.  A reminder that heroes come in all shapes and sizes.  And anyone who chooses to can make a difference.

Unique to 2015…we also have these two options for those who want to participate but aren’t sure how:

  1. You can make a hat, scarf, blanket etc. and send it to  Crystal @ PO Box 1902 Russell Springs Ky 42642.    These items will be distributed to those in need, raising awareness for Lissencephaly in the meantime. Visit Crochet for Lissencephaly to learn more, and give Crystal some encouragement (or gift cards to buy more yarn) for all that she has accomplished this year!
  2. We are raising money for a wheelchair accessible swing to be placed in a park in Kentucky. The total cost will land in excess of $2,500, so we’ve got our work cut out for us! One of the ways we are raising money is a 5K in early September with my extended family. But we will welcome anyone who wants to contribute to this cause.   If we raise “too much” money (what a fantastic problem) we have some other great ideas, including helping a family in need of equipment, and a charity that ships medical supplies.

Tell us about your good deeds on and leading up to September 17th. As you can see from the link from last year…when appropriate, photos make it more fun and just might help inspire someone else!

Go be a hero to someone.  If they ask, tell them Landon and Nolan sent you.  I can’t think of a better birthday present.  And I can’t wait to hear from you.

#herochallenge2

#twoifbyfaith

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Soar

Our “new” home – one year later

This year marks one year at our new home. One year ago I cried nearly the whole 5 hour drive as the twins and I joined their dad, and awaited big brother who would follow days later. Leaving something good is scary, because you don’t know what’s in store. We came here on a leap of faith.

And we’ve landed right where we’re meant to be.

The house, coworkers, community, church, medical care, home health nurse, DARRA, all of these have helped us settle in to a great environment in which to raise our family. The list of why we know “here” is “right” right now is long and growing.   We feel very blessed.

As for what a difference a year makes…Look at these little buddies, then and now!

Our last DR apt before moving.

Sweet secrets

Sweet secrets

Karson’s first look at his brothers’ new chairs. Nolan was so tiny!!

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Who you callin’ little?  Nolan has nearly doubled in size!

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They’ve endured so much, and come so far.  I love these boys endlessly.

Coming soon: A 2nd birthday!

On September 17th, 2015, Landon and Nolan will turn 2. TWO!

When you’re battling a life threatening illness, any birthday is worth celebrating.

When you’ve been diagnosed with Lissencephaly, turning two is extra special.

I can still remember like it was yesterday:

We were in the darkened, quiet room where our ultrasound tech was working hard to help us learn everything we could about our little guys. We had already been through quite the roller coaster of emotions the last few weeks. “There’s a little extra fluid, but hopefully it’s nothing” “It’s Dandy Walker, ACC, and absent CSP, there’s nothing I can do.” “You can still terminate” “We see a little connectivity, I see no reason to suspect this is life threatening”.  

After all that, we were at our second visit with our specialist of choice and were moving forward no matter what.

We were still excited about the recent developments that there actually were some signs of hope in the cavum septum, corpus callosum, and vermis where we were previously told the brains were in really bad shape.

Things weren’t normal, but there was hope.

And then our Doctor figured out it was Lissencephaly.

I’m paraphrasing, but in the gentlest way possible, she delivered these impossible words:

“I know we talked last visit about some signs we were excited about. But we also said we were hoping to see some more wrinkling on the brain. And that doesn’t appear to be happening. I’m afraid we’re looking at Lissencephaly. And with Lissencephaly, there is a high likelihood of severe developmental delays.   And I start to worry more about whether or not we’ll celebrate that 2nd birthday.”

Amidst the tears, the fervent googling began, and I kept seeing two over and over. Life expectancy, two years.

Since that time, I’ve seen posts and updates about families who lost their angels well before that 2nd birthday.   But I am thrilled to say that I’ve also gotten to know many families and little fighters who have lived and continue to live well beyond those expectations.   I assure you both of those groups would tell you that life is precious, and that tomorrow is never a guarantee.

Within our own family, just since their 1st birthday, we’ve had nine hospitalizations, and two occasions where Landon’s pneumonia became so advanced, that end of life discussions were had, and we feared that he might not make it back off of the ventilator.

So celebrating two is a big deal.

And “tomorrow” is never a guarantee.

And you’ll be hearing a lot about this milestone. ;-)

Like last year, we plan to encourage a “hero challenge”. Rather than send cards, gifts, or mementos to the boys, we are asking that you do something nice in their name.   Help them by helping others in ways they aren’t able. More details will follow, and we’ll have a couple of specific projects you can join in on if you so choose. I just wanted to put out this reminder that we have something to celebrate very soon, and we would love your help in making it an extra special occasion.

The theme this year will be “Let your light shine”.   And shine we shall.

#herochallenge2

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