Thursday, November 26, 2015


Each year, America dedicates a whole day to being grateful and celebrating Thanksgiving.  Though, it mostly feels like we have started to skip this day and move straight to Christmas!  I have always appreciated Thanksgiving more so than Christmas because there's much less fanfare, less distraction and the simplicity of it makes it easy to remember its purpose.  Giving Thanks.

This month in my daily devotional, the theme has been focusing on being grateful, even in the midst of a storm.  Having this thankful heart, opens your heart to bigger possibilities and opportunities for beautiful things to happen.  Going through a difficult circumstance SHOULD make you appreciate life in all it's fragility.  We all know life can literally change in a moment.  That reality has gripped us for four years.

I have wayyyy too long a list for me to share with you everything I am grateful for.  And I do my very best to thank God each day for all the blessings.  I don't know that my heart could ever THANK God for what we all have endured for Elena, but I for sure am able to THANK Him for the innumerable amount of wonderful things that have happened as a result.  Our home in a wonderful community.  Elena's school.  Our church.  Our new friends.  Our changed hearts.  Our scars that have strengthened us.   Our beautiful girl who is alive!

This Thanksgiving Day, I want to encourage you all to, despite your present circumstances, take a second to absorb the beauty that is your life and be thankful.  My devotion this morning said "In our broken world, blessings and sorrows intermingle freely".  How true this is.  Today, don't let our sorrows and difficulties render us bitter.  Let's open our heart and be thankful.

When I was in my darkest place of grief after Elena's injury, when everything was dark and impossible, I always remember there being the tiniest prick of light.  I held onto that for dear life.  Now I know that was the hope God had promised to never leave me and to get me through that impossible storm.  The light surrounds our family now, no longer just a prick.  It's our shining light, and it comes through Elena.  Our family photographer took this picture of Elena about a month ago.  It is perfection.  The light that day, only shown on Elena and only for a brief moment.

Wednesday, November 18, 2015


I get questions allll the time about Elena.  I know people have shared with me, that they sometimes feel uncomfortable asking us, but I want you to know I am always happy to answer questions.  I've never had one that offended me (yet!).  Before we were thrown into this world, I had no idea about any of this, so I definitely sympathize with the lack of understanding about our situation.  But just a warning, you'll always get the straight up truth.  I don't sugar coat things and I certainly don't paint rosy pictures.  Chad and I are both very positive people, but we are both very realistic too.  We have great hope for what Elena will achieve, but four years of this has given us the ability to have both hope and peace with whatever lies ahead.

1.  Does Elena eat?

Ahh, this is the #1 question.  And it's one of the more complex ones!  When Elena's G-tube was placed before leaving Riley, we thought FOR SURE that it was a short-term thing, only lasting a few months.  But then again, we had ZERO idea what we were really in for!  Elena's swallowing ability was damaged by her injury (much like stroke patients sometimes) so we have spent four years helping her coordinate the complex physiological task of swallowing.  This is one where we still have hope that she will eat someday, but are fully at peace if that isn't the case.  Long story short, Elena CAN swallow and do-so somewhat coordinated, but the girl has ZERO interest in eating.  That's where the frustration lies.  She has proven many times over the years that she is capable of eating, but this is one of the very few areas she always fights us on.  I have a few theories on this but until she can tell us, we won't know for sure.

2.  Will Elena walk?

And this is definitely the #2 question we get.  Short answer, we don't know.  I believe she will to some extent.  But years of me watching her in therapy has made me see just how HARD it is for her to move her little body.  The effort is so great for her.  So I think she will, but likely small distances (think, around the house) and not without exhausting effort.  Again, hope here, but totally at peace with this.

3.  What does Elena do all day?

We got this one a couple weeks ago and I almost laughed!  Looking at her, I could see how one would wonder this.  So here's our typical week:
Monday:  School & Private Speech or PT a couple times a month at home
Tuesday:  School with early pick up and straight to the Jackson Center for 3 hours of therapy
Wednesday: Outpatient OT then to the JC for 3 hours of therapy
Thursday: School & to Riley for outpatient Speech
Friday:  School
And scattered in there are doctor appointments, wheelchair tune-ups and miscellaneous.  This doesn't include daily stretching, feedings (30-45 minutes x 3 a day), time in her stander/gait trainer and her daily dance sessions to her music.  She's not typical in that we don't do playdates, trips to the park, but you show me a four year old who is as busy as her!

4.  Why doesn't Elena look at me or react to my voice?

As I've discussed before, Elena has a Cortical Vision Impairment.  This means her eyes bring in information that her brain cannot process in the typical way.  It's been described to me as looking through a kaleidoscope, lots of color and shape, but an inability to distinguish things easily.  Her vision has improved with therapy, but like anyone with a sensory impairment, your other senses compensate for the damaged one.  So Elena relies heavily on her hearing.  As you can imagine, faces would be very complex to look at, they're all different and constantly changing expressions make them quite variable.  So, she really only makes eye contact with familiar people.  You'll see her try and kind of "scan" you but she struggles at times even with Chad and me.  If she doesn't recognize your voice, you'll probably get less of a reaction too.  I always think about me, if I was four and couldn't see well, hearing an unfamiliar voice would be a little scary.  But don't let her fool you, this girl is a social butterfly.  She LOVES people and the right people will bring out the hilarity in her.  If you've ever been around Elena & Uncle Evan, you'll know that his burps and loud voice, will get her fired up!

5.  What does Elena like?

MUSIC!  Elena loves music though she has very specific taste that does not go outside of the Toddler Tunes/Disney genre.  Though Taylor Swift is a favorite and she will allow a few other pop tunes as long as they're being sung by kids (Kidz Bop, what what?!).  She loves her friends at the JC and School.  She loves stories, bubbles, Mickey and Sofia, balloons and everything Miss Lisa (her OT) does.  Most of all, she loves being included.  She wants desperately to be part of the action, even when it's things she can't physically do.  It's hard sometimes to tell because of her challenges, but I assure you she is a typical four year old and just wants to be treated like that.  It can be hard to know what to say to someone who can't always respond, but we talk to her like she responds.  If all else fails, just burp, toot, sneeze or cough....those will ALWAYS get a giggle out of her!

6.  How do you know when Elena doesn't like something?

Oh, she let's you know.  There's no mistaking it.  These include waking up from naps, Mom talking to other people, bedtime, music she doesn't like and eating.

7.  I don't know how you do it.  How do you manage it all?

This one is the simplest.  You just do.  It's all we know.  It's our child.  Are our challenges different than most parents?  Yes. Is it more complicated?  Maybe.  Life hands you difficult circumstances all the time.  For me personally, my faith is the source of all my strength.

I'm sure there's lots more questions out there, but I'd say these are definitely the most asked.  I can't speak for all parents of special needs kids but I would much rather you ask than stare or assume.  Staring and assuming are the WORST!  Maybe you'll find this helpful.  The most important thing to remember when you're around Elena is that she's just a four year old kid.  She 100% knows what's going on, even if she seems unresponsive.  One of these days she'll be able to tell you your jokes are bad or that she hates playing "peekaboo"! Ha!

Tuesday, November 10, 2015

RMH #4

The first week of November is always roller coaster.  We experience the lousiest day remembering the terrible day of Elena's accident, but then turn around and celebrate her and an organization that gave us so much during our stay at Riley.  For the fourth year in a row, we were able to support the Ronald McDonald House at their annual gala.  

The first year we attended, it was a gift from our friends on Elena's first birthday.  We had one table of friends.  Then, the second year we added another table.  Then, the third year we added another table.  This year we had FOUR tables of friends and family who were there to show their support for us and for an awesome organization near to our hearts.  We are so honored to have so much love for our family.  Like seriously.  I can't even begin to express what it means. 

The Ronald McDonald House gives SO SO much to the families who find themselves seeking care for their children.  You may remember the video we made for them last year, sharing our experience with them.  I can't begin to tell you all that they provided us for those 20 days we spent at Riley.  We are just thrilled that we, unlike a vast majority of their families, are able to give back.  And that our awesome support system of friends and family are quick to also support this special place.

It was another fabulous night with so many people we love!

Here is our video from last year:

My Pi Phis!

 Our crew

 A rare picture of Chad and me!

 My brothers


Tuesday, November 3, 2015

Dear Melissa

Four years ago on this day, I received the call that would forever change our lives.  For lots of reasons, I've never written the specific details of that day, of Elena's injury and what followed.  Some of you know, some of you don't and most of you don't know even the whole story.  I hope to be able to share that with you some day and I'm certain I will.  But just for today, I want to share something else with you.  I want to show you the awesome power of God's grace.  There is nothing we could ever do to find ourselves undeserving of it.  And I want to tell you that it's for you.  Yes, even you.  It's for you, Melissa.

November 3, 2015

Dear Melissa,

I forgive you.

Only God knows the number of tears I have shed during the last four years.  I have carried a bitter burden of anger in my heart towards you each day for four years.  You set our lives on a course we had never dreamed.  But God has held our family in the palm of his hand.  In the car on the way to the hospital that day, I could barely breathe.  I couldn't think.  I couldn't even pray.  I literally screamed Jesus' name the entire car ride.  From that moment, He has always been there wrapping me in his love and assurance, not once ever failing or forsaking me.

But, through all the pain and suffering, I have emerged whole.  Only God can make that happen.  Only a just, loving Father can take what happened and create a masterpiece of changed hearts.  And He is the only reason I can wake up every day with joy in my heart and extend forgiveness to you.

The bitterness in my heart for you is gone.  I have been set free from that burden.  In it's place is a peace that passes all understanding.  And I want you to know that.  

I will never understand why this happened to our precious Elena, but I find great joy in knowing the lives she has touched and the light she is to me and so many.  Only God could take our tragedy and weave it into the beautiful life He has restored to us.  She is our greatest blessing.

I don't know the impact that this has had on you.  But know that I will pray for you to know and accept the unending love and grace that Jesus gives us all.

In God's love,


I hope you, who have followed our story from the early days while still at Riley, understand the difficulty it has taken for me to be able to reach this point (I shake even as I type this).  You may remember the ant/tapestry analogy I used early on.  This is my tapestry.  When I realized I needed to extend God's mercy and grace to this person, I had a glimpse of my tapestry.  I can't describe to you the awe and humility I felt at that moment.  Four years worth of questions, prayers, blessings, "coincidences" collided into that moment with stunning conviction for this to be my next step.  I am living Ephesians 3:20.  God HAS been able to do immeasurably more than I ever asked or imagined.  Maybe not the physical healing for my baby that we so desperately longed for, but gosh, the hearts that have been changed.  Mine.  Chad's. Yours?  You guys, physical healing is so obvious and so understandable but what God really cares about are hearts, souls.  They are what last an eternity.  I think about my heart before all of this, during all of this, and now, coming through all of this and it is changed.  Wholly.  Holy.

A dear, dear friend whose wise words and fervent prayers have helped guide me through this process of forgiveness sent me a text the other day while she was in church singing "It Is Well With My Soul", saying it made her think of me.  It was the perfect way to describe what this forgiveness has done in me.  I am unburdened.  I am free.  It is well with my soul.  I am no longer the Emmalee screaming on the way to the hospital, unable to breathe.  No longer is He carrying me, I'm walking with Him.  Praise God.

When peace like a river attendeth my way
When sorrows like sea billows roll
What ever my lot you have taught me to say
It is well, it is well with my soul

Though the devil will ruin, though trials may come
Let this blessed assurance control
That Christ has regarded my helpless estate
And He shed His own blood for my soul

It is well, with my soul
It is well, it is well with my soul