Goodbye Nana

Chad and I had been married only six months.  He had gone down to neighborhood pub with a friend to grab dinner and a beer.  I was sitting at the table in our condo downtown eating dinner when she called.  Her voice was calm but immediately I knew something was wrong.  It was Chad's Mom, Sharlene, and she had just been diagnosed with Stage 4 Metastatic Breast Cancer.

The next few days and weeks were frantic.  Chad spent hours on the phone with cancer organizations getting information, the IU Simon Cancer Center, Moffitt Cancer Center in Tampa near where his Mom lived, friends who were doctors, anyone and everyone who could give us any hope.  It was incredibly dire, doctors had suggested she go home and spend time with family, their best guess was about six months left.  But they didn't know Sharlene.

When doctors gave her that diagnosis, they had no idea the fight, the drive, the courage that Sharlene had.  She was young, 55, vibrant, full of life.  They didn't know that she would spend the next nearly six years defying the odds, enduring weekly treatments for the sake of living.  Moffitt Cancer Center provided her with the life prolonging drugs, but she had all the fight.  She endured an unfathomable amount of pain and sickness, but she NEVER complained.  She carried on, battling the disease and soaking up as much life as she could.  As result, we made six years of memories together.  She was able to meet both her grandbabies, watching them grow.  She spent time with the love of her life, Keith, her friends and family.  Precious time.

About a year ago, her health turned and we decided it was best to bring her to Indiana where Chad could better care for her.  He also made the excruciating decision to end her treatments.  We barely expected her to live a couple weeks once up here, but again, she defied the odds.  Her health rebounded and we spent a precious 11 months with her.  Though moving her was an incredibly difficult decision, looking back I know God was subtly letting us know time was running out and having her here allowed us to spend so much more time with her.  We shared holidays, birthdays, sunny Saturdays and quiet evenings together.  All moments and memories we'll cherish forever.

In late September, Chad arranged for one last farewell trip to Florida.  It was a beautiful gift that he was able to give her.  She spent time with precious friends, Keith, her beloved Scooter and Pretty (her dog and cat) and see the ocean one last time.  It was God's perfect timing because soon after her return we started noticing a decline in her energy and mobility.  At Thanksgiving we noticed a few odd symptoms, shared them with her hospice nurse who confirmed that the cancer had again invaded her liver.  We were told things would move quickly.  Chad and I agreed we wanted to bring her home with us.

Things did happen so quickly, much more so than we anticipated.  It sounds silly, because we knew for so long this is how it would eventually end, but it totally caught us off guard.  In a matter of just a few days, she went from telling me she wanted me to cook her vegetables for dinner when she moved in with us, to being non-responsive in a hospital bed in our home.

Amidst all the horror of death, I think about how beautiful it was watching Chad care for his Mom.  I've watched him lovingly, patiently care for her for the last year, but this was different.  The love between them was palpable, even in her unresponsive state.  Every time Chad would tell her he loved her, she would muster every ounce of strength just to move her lips, mouthing "I love you".  Though both fiercely independent, they both desperately needed each other in those final days.  It was both heartbreaking and heart-warming.  There was so much love in our house the last few days.  I can honestly say Sharlene passed peacefully surrounded by it.

In the days following, we've poured over old photographs, mementos and stories of Sharlene.  Looking at things from Chad's childhood, I feel like I've connected with her in a way I never had before, as a Mother.  You could feel the love and pride in every saved art project, English essay, Little League trophy and Honor Roll certificate.  I'm so thankful for the way she helped shape Chad into the person he is.  He is an incredible husband and father, no doubt because of her.

We cry because we miss her but rejoice because her suffering is no more.  We cannot even fathom the joy of spending eternity with our Father, but know she is loving singing His praises.  Our goodbyes are only temporary and we look forward to the day when we see her again!  We found comfort from my daily devotional on December 15th, the day Sharlene breathed her first breath in heaven, which read this:

"Your longing for heaven is good because it is an extension of your yearning for me.  The hope of heaven is meant to strengthen and encourage you, filling you with wondrous Joy.  Many Christians have misunderstood this word hope, believing that it denotes wishful thinking.  Nothing could be farther from the truth!  As soon as I became your Savior, heaven became your ultimate destination.  The phrase hope of heaven highlights the benefits you can enjoy even while remaining on earth.  This hope keeps you spiritually alive during dark times of adversity; it brightens your path and heightens your awareness of My Presence.  My desire is that you may overflow with hope by the power of the Holy Spirit."  

Jesus Calling, Sarah Young

Many have asked about services for Sharlene.  She made it clear she didn't want any fuss over her, no funeral!  Instead, she just wanted everyone to celebrate her life.  We'll be doing this privately with just our family.  Chad and Keith will then take her ashes back to one of her favorite spots, the picturesque sandbar near her home in Florida where she had so many wonderful times, chair in the water, toes in the sand.  If you would like to honor Sharlene's memory, you can donate to the Moffitt Cancer Center Foundation on her behalf.  Moffitt provided her with outstanding care and no doubt precious time.  Your donation will help breast cancer research and care.  You can donate here and click "donate" or mail your donation to (make sure to designate in memory of Sharlene Hinton on your donation):

Moffitt Cancer Center Foundation

12902 Magnolia Dr.

MBC-FOUND

Tampa, FL  33612

We are so grateful for all the heartfelt messages of love and support of our family and memories of Sharlene.  We celebrate her life!

Sharlene Leone Marquand Hinton

May 5, 1955 - December 15, 2015

"At Last" Mother/Son Dance at our wedding 

August 2009

Nana & Laney May 2014

Sisters, Renee & Shar

August 2014

Nana & Cal

February 2015

Boat Days in Florida

Sandbar with friend Joanne

Cheers to you, Sharlene!

Looks Can Be Deceiving

We had some family pictures done this fall.  I should clarify, not full family photos, but mostly of the kids.  A certain member of our family who hates pictures, ahem Chad, showed up in his work suit (though an always prepared wife brought him clothes!) and didn't want to be in any pictures!  Regardless, the pictures of the kids turned out beautifully!

Take a look...

And just to keep it real,

This is really what taking family pictures is like.  Am I right, Moms?  Sweaty, frazzled, singing, clapping hands, making bribes...NOT the angelic images that appear.  **And no, I did not drop Cal here, we were trying to get a good picture of me with both kids and he laid down to get away from me so I threw up my hands in surrender, all the while holding our 30lb Elena.  Ha!

Speaking of perfect images, Christmas can be a difficult time of comparison, portrayals of beautiful Christmas trees, children in matching pjs, and perfect togetherness.  I try very hard not to portray our life any different than what it truly is.  We are not perfect parents.  We don't have perfect kids.  Our house is often in shambles.  I am often in shambles.  Our life is far from perfect.  

On Sunday, our minister was giving a sermon on this very fact.  Something he said really stuck with me, that we often compare our private life with others' public lives.  I mean how true is this??!  Beneath the images of our perfectly posed kids, our lives really look like the photo above.  But we think we are alone because we only see the outer shiny images of those around us.  I have my own rule when I become tempted to compare my life to that of someone's I see on social media:  those who portray their lives to be the MOST perfect and happy, are the ones I pray for the most.  Because I sense that just beyond that ideal photo, is a hurt/insecurity that they feel the need to cover.  

So, in an effort not to fool any of you....I can't even tell you how exhausted I was after all the effort it took to get even just a few shots of smiles.  (Our photographer, Annie, FOR SURE thinks we are nuts!)  This holiday season, instead of wishing my house was beautifully decorated for Christmas or that my life was somehow more perfect, I think I'll be happy being a sweaty, frazzled, on-the-verge of losing my mind, kind of Mom.  And you all can laugh when you receive our "Hinton Family Bliss" Christmas card! :)

Thanksgiving

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.

FAQ

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!

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

 

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,
Emmalee

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

18 Months

How is our sweet little guy growing so FAST?  Gosh, six months have gone by in the blink of an eye.  He has changed so much in the last few months.  I see his one-year pictures and think he looks like such a baby!  It makes your head spin to realize how much happens in just a year and a half of life!

At 18 months, we pinch ourselves to believe that this tender-hearted, funny, loving, thumb-sucking boy is ours.  It is an honor to be able to watch him grow, change and emerge as the precious little guy that he is.  There's no way I could ever say that and truly mean it, if we were in a different situation.  It is such a blessing to be able to have an appreciation for that.  One that most parents take for granted.

I'm finding it hard to describe how much fun Cal brings to our family.  Sure, he can be whiny, impatient and throw a heck of a tantrum if you take away his (SISTER'S) Ipad.  But, overall he is joy.  Not a joy, but joy.  It is true what they say, you love your children the same, but appreciate them for the different little people they are.  Calvin keeps us all laughing.  Elena adores him.  And he adores her.  His first word in the morning is "sissy".  And he loves giving Elena kisses before bed time.  Watching them together literally makes my heart burst.  I hold so much hope in their relationship and it's beautiful to see it unfold.

Currently, Cal is loving apples, airplanes, golf, words (of all kinds...yikes!), Mickey Mouse and peekaboo, just to name a few.  About a month ago, it was animals and their sounds all. day. long.  He really does have quite a vocabulary, saying more words than I can count right now.  We talk a lot at our house.  I'm thinking he picks it up because we are always describing things to Elena, talking about things we hear, asking Elena questions and reading lots of books.  When you have one visually impaired, non-verbal child, you reallllly talk things out!  I think Cal picks up on all that.  I won't lie though, every single time he says "Mommy" or "Daddy" I tear up a little.  You have no idea how sweet those words truly are.  Our favorites right now are hearing him say "Mickey Mouse" and "Peekaboo, I see you!".  The way he says it is simply adorable.  Even though he says them 100 times a day, it still makes me smile.

To Chad's delight, Cal has really been working on his golf swing.  He received a little Fisher Price set for his birthday back in April.  It's pretty cute to watch him line up the ball and "tee off"!  Chad shows him how to do it, and he mimics him.  That being said, he mimics everything.  Everything!
He "helps" put lotion on Elena after her bath.
Or sweeps when I'm running the vacuum.
Or cooks when I cook.
Or cleans when I clean.
Or helps put Elena's boots on in the morning before school.
Or "mows" when Daddy is mowing.
Or "waters the flowers" when we do.

The list goes on and on.  And he repeats everything we say.  Everything.  (no more potty mouth at the Hinton house, we quickly learned our lesson!)  He loves getting Sis on the bus with me in the morning and is quick to say "AMEN!" after prayers at night.  He is such a precious little thing who fills our day with lots of smiles.  We love you sweet Calvin Merrick!

Florida & Fall

The days and months are flying by and I'm struggling to keep up!  I've been meaning to post a blog for weeks!

We enjoyed several days in the Florida sun last week.  We flew down with my family for a final hurrah before my parents took off for Arizona for the winter (rough life they have!).  It was great to spend some quality time with our family, not to mention spend every day on the beach!  It was Cal's first time to enjoy the beach, you may remember us taking a trip last August with Chad's family.  But he LOVED it.  He was completely fearless.  He loved shoveling in the sand, but more so, the water.  Gramma Frey showed him how to stomp his feet in the waves, splashing around.  Grampa Frey showed him to "jump" the waves as they rolled in.  It was so fun to see him enjoy it so.

Elena loves the beach too.  She loves feeling the ocean breeze and standing in the waves as they crash against her.  It's an exhausting job for whomever is holding her, but it's fun to watch her squeal in excitement when she gets splashed.  We had so much fun and are already looking forward to going back next year.  But first, I'm hoping for a mid-winter, when it's bitterly cold and snowy praying for spring, trip to Arizona to thaw out and see Gramma & Grampa!  Hint, hint Chaddy!

This past weekend, we made our annual trip to the Country Market Pumpkinfest here in Zionsville.  Evan & Sam joined us, braving the unusually chilly temps to have a little fun.  The boys loved going down the giant hill-slide, riding the "tractor", seeing the animals and of course, picking out "punkins".  It's so fun spending time with "Sahhhhhhm" as Cal says it, and watching them play together.  They're both just so cute!  Elena had fun too.  She got to go down the slide again this year with Mommy, which produced big smiles!

The leaves around here are beautiful.  Another season flying by.  We're in such a good place right now.  Cal keeps us all entertained and laughing with his spirit and Elena is loving staying busy.  Hard to believe the holidays are creeping up on us.  They'll be sure to bring along more wonderful times and memories with everyone we love!  So much to be thankful for, even on our tough days.

Here's a boat load of pictures from the last few weeks!

Our only family picture :(

First steps on the beach!

Riding waves with Grampa

My favorite picture of the week...Gramma & Laney watching the sunset.

Even got to catch up with more family, Aunt Rene & cousin Megan and her new husband Brian!

Changing gears (and weather!) to Pumpkinfest

Cuzzies Sam & Cal

Follow Up Photos

As promised, I wanted to share with you Elena's pictures from Grape Escape.

This one is her "Cowgirl" picture.  They had a western theme this year, so Elena rocked some cute cowboy boots!  I just love the expression on her face in this.  It's so her.  Laid back, sweet and innocent.  Gosh, she's cute! :)

This picture is her artwork.  Purple has been a theme in our life this year...purple wheelchair, purple AFOs, purple gait trainer, purple everything...so seeing that she chose to paint with purple isn't surprising!

Thanks for the awesome feedback on the video.  I know it was good to show you all what Elena does in therapy each week.  That was just a snippet of how hard our girl works.  She puts in 9-10 hours of therapy a week, not including at home or at school, so that just gives you an idea of the tasks we work on.  We're so proud of what she has accomplished at the Jackson Center and love our family there.  I'm so glad we were able to share that with you all.  

Thank you for all your continued love and support.  I've been feeling so many of your prayers lately and I can't express to you how much encouragement that brings me.  We are so appreciative of the love you give our family!

Grape Escape 2015

You may remember previous posts about us attending the Jackson Center's annual fundraiser in 2014 & 2013, Grape Escape.  It is an awesome night celebrating our kids and raising money to keep the Jackson Center serving our families.  This year, there was a western theme and it was a beautiful night (so I heard!)

I actually couldn't attend this year, as I had already committed to be the social chair (ha!) for a weekend with my college girlfriends.  BUT, Elena had plenty of support this year in our friends and family.  Over $125,000 was raised, which goes directly to help serve our kids and keep this wonderful place in operation.

Unfortunately, Chad can never be trusted to take ANY pictures EVER, so there are no photos of the evening.  But, we were happy to be involved in making this year's video.  I'm always excited to share our love of this place and what it's given our family.

I'll let the video do the talking.  But, I promise I'll share a picture of Elena's painting in a later post.  The kids paint pictures to be auctioned off each year...Jackson (yes, he's the namesake) had a painting this year that sold for $7,000!  While Elena's didn't go for that much, it's still a "Picasso" to us!

**Excuse my man-voice in the video-I had a horrrrrrrible cold when we filmed!

 

Answered Prayers at Cracker Barrel

The other day I overheard someone say in response to a tragic story that it was "hard to believe that's God's will in a situation like that".  I immediately found myself offended.  Later as I was relaying the story to Chad I explained that there is NO WAY that it is "God's will" for ANYTHING terrible to happen to ANYONE.  You could never convince me that it was God's plan for Elena to be injured and suffer the way she has.  Never.  Rather, I fully believe that when terrible, inexplicable things happen, God weaves that tragedy into something really beautiful.  It doesn't necessarily mean easy, but beautiful nonetheless.  I have prayed so often the last few months for God to continue to use me and use our sweet Elena to continue to be a light for Him.  I want so badly for people to see that my strength doesn't come from some internal powerhouse that was genetically bestowed upon me, but my strength comes from my faith.  And without it, this story wouldn't exist.  I would have never survived the last four years the way that I have.

I'm going to be honest with you.  In the last couple months, I've been struggling with the fate of my blog.  It's been such a part of our family for the last four years.  These days I have much less time to devote to real, meaningful posts.  Most are done on the fly and out of guilt because I haven't blogged in awhile.  I've wondered who actually reads anymore, what kind of light, if any, are we shining?  I've wondered if I share too much.  I've thought about devoting my time to compiling our entire story, start to finish, about all of what we've experienced.  I've felt as though it's time for something else.  It's been on my mind so often lately that I've really been praying about it.

Why am I telling you all this, you ask?  Because, last night at Cracker Barrel, God answered my prayer.

Before you go thinking I've lost it and officially a cuckoo Christian, let me explain!  Chad and I took the kids to Cracker Barrel for dinner last night (yes, we live a very fancy, exciting life).  Soon after we sat down a sweet woman came up to our table and said this:

Hi, you don't know me.  But my name is

Judy Russell.  I live in Lafayette and I read

your blog.  My Bible Study and I have been

praying for Elena and your family for years.

You have a sweet family and we will

continue to pray for you.

It was all Chad and I could do to keep from bursting into sobs.  No, I didn't know Judy and I don't know how she found my blog but that was the answer that I have been praying for.  It came from the sweetest woman at Cracker Barrel over meatloaf and chicken n' dumplings.  I mean, how awesome is God?  

Elena's story, our story IS still shining a light.  God isn't done with us.  There's more to share.  I don't want to let my self-doubt and insecurity interrupt the continuation of our story and the glory that it will bring to Him.  So bear with me folks.  I'm a busy Mom these days and have little time for anything other than feeding, transporting and cleaning children, but don't forget about us.  We are STILL humbled by your love and prayers.  And we most definitely want to keep shining a light.  

"Be still, and know that I am God;

I will be exalted among the nations,

I will be exalted in the earth.

The Lord Almighty is with us;

God is our fortress."

Psalm 46:10-11

Quick Update

I have about five minutes for a quick update.  Seeing that it's 10 days after Elena's GI appointment, I need to give you the rundown.  So, appointment went as expected.  Her GI doc is great, but there's only so much she can do.  She did run several tests to rule out things like something with her G-tube, constipation and a more severe issue (ie gallbladder, liver, stomach, etc.)  Elena had a endoscopy several months ago, so we knew there wasn't anything terribly wrong with her esophagus.  So, we're trying an old med that we've done before to see if that helps.  But no real answers.

Elena also saw her longtime speech therapist this week, who thinks, for whatever reason, Elena's gag reflex has been heightened.  So, anything that may have not made her gag in the past, is making her gag now, hence her throwing up and gagging ALL THE TIME.  This definitely makes the most sense to us, as Elena has been realllllly gaggy for quite some time.  And she usually starts as a cough or a weird gag before throwing/spitting up.  So, there's that...which isn't necessarily the easiest problem to treat.

Elena had been doing a little better since her appointment, only having spit ups and mostly around her feeding times.  Then Tuesday at the JC, I got a call saying she had thrown up everything and more during therapy.  So, I guess the silver lining was that for once I didn't have to clean it up?  Yay?

For now it's just something we will be dealing with until it's better.  That's a tough one to swallow (pun intended) but such is life with child who has feeding/swallowing issues.  We'll just keep praying for her gag reflex to settle back down (such an odd prayer request!) and hope that between God and medicine, she'll get some relief.

I'll leave you at least with a cute video of Elena with one of her faves, Miss Lisa (her OT).  Miss Lisa has been with Elena since she was 6 months old and Elena LOVES her.  Each week, we start her session with B-I-N-G-O (one of her favorite songs) and bouncing (another fave) to get Elena to look at Miss Lisa in the eyes, on her left....a really tough task for Elena.  She knows this game, but is always such a stinker!  I took a video of it because every week, I love watching Elena's face during this exercise.  It just makes me happy.

Prayer Request

Guys, I haven't asked specifically for a prayer request in a long time.  I know so many of you keep Elena and our family on your prayer list regularly and we are sooooo grateful for that.  If you can over the next week, pray specifically for Elena's GI issues.  Chad and I are so incredibly frustrated and feel like the only thing left is to bombard God with prayers for this.

Most of you know Elena has struggled constantly with severe acid reflux and vomiting since her injury.  Literally for three and a half years we endured daily projectile vomiting.  We've been from doctor to doctor and everyone tries the same thing, then throws up their hands in surrender.  Finally in March, we switched Elena to a new formula that was actually real food blended up.  We were praising God, because for about three months we had NO vomiting.  It was a life changer.  For once we didn't fear the threat of a major vomit in public, in the car or at home.

Out of nowhere, a couple weeks ago,  Elena started vomiting at some point pretty much every single day.  I can't keep her bedding or our "puke towels" clean.  The gagging is incessant.  She's puked at the doctor, the dentist, the Jackson Center, the car, other people's cars, in bed, on the couch, on the babysitter, in the bathtub, in her feeding chair, on me, on Chad....everywhere.  She's pretty miserable around feeding times.  The worst is when she wakes up either from a nap or in the morning.  It's a guaranteed throw up.

We see her GI on Monday.  So in the meantime, please pray for both Elena and the doctor.  We need resolve both for our sanity and for our sweet little girl, who has to endure this.  We're all miserable.

Balancing Act

Lately, I'm finding myself really struggling to balance everything that we have going on.  I know this is a pretty typical Mom-struggle, but the anticipation of how we're going to manage our new fall schedule is really throwing me for a loop.  Just when I think I have it figured it out, I find myself back at square one.

On top of all this, I have MAJOR Mom-guilt.  I simply cannot do it all (though I like to think I can).  I'm realizing I can't be at every one of Elena's therapies (missing one killlllllls me) without totally neglecting Cal.  And Cal is at a really fun stage right now, where he is watching everything we do and loving to explore all things new.  I totally feel like I'm missing that.  This week alone, he was with a babysitter three of the five days.  Elena hasn't even started school yet.  It's such a struggle to be a present Mom with both kids at this stage.  It's a constant juggling act.

This is our normal, but my heart still aches for a "normal" normal.  Like, my four year old's life consists of shuttling from therapy to therapy, to appointment to appointment.  My heart wants it to be filled with tea parties, dress up, trips to the playground, to the pool.  Just once, I want to be in public, pushing Elena in her wheelchair, without feeling everyone's sympathetic eyes on me.  I keep fooling myself into thinking that as time goes on, that longing will go away, that I shouldn't be surprised when I tear up watching a child Elena's age.  It still happens though, a lot.  When it does, it stays with me for a few days, then eventually fades into the busyness that consumes our day until it pops up randomly again.    It never really gets easier, I guess, maybe just different.  I'll probably be writing these same feelings.....well, forever,

My current challenge lies in being the same Mom, differently, to both kids....if that even makes sense!  My job is so different for Elena than it is for Cal.  It doesn't matter how hard I try, I have to neglect one to serve the other.  And that kills me.  Which brings me to our current situation, how do I get Elena to all her appointments during the week and not totally neglect Cal?  He's at an age now, where taking him with me is pretty much out of the question for many reasons.  I'm doing my best to let it shake out for a couple weeks before deciding on anything.  The one thing I do know is that I can't be in two places at once, so it will most definitely need to be a balancing act.

15 Months

Our little Cal turned 15 months this week.  I can't believe how much he has changed just in the past three months.  He is full-on toddler.  Busy, wild, funny and sweet.  I can't even grasp how blessed I am to be able to watch him grow, change and turn into the little guy that he is.

Over the past few months, Cal grew quite a bit (as we had suspected).  He has definitely thinned out a bit thanks to his constant running through the house.  I can't believe how quickly he went from his adorable wobbly walk to a full out run EVERYWHERE.  I remember seeing my nephew, Sam, start running everywhere and thinking how funny it was, and now I'm laughing at Cal who has so much to explore and so little time to do it.  All this running makes it difficult to find pants for him!  Seriously, three months ago he was wearing 12-18 months shorts, and now I can barely get 12 month shorts to fit him.  They fall right off his waist.  Gee, I wish I had this problem...would it be weird if I just started running everywhere?! Ha!

Lately, Cal has really been practicing his animal sounds (a favorite in our house!).  We name the animal and he laughs and makes the noise.  So far he does cow, pig, horse, rooster, chicken, sheep and monkey.  His rooster is really the best :)  He has really been able to pick up quite a few words too.  Right now it's all about "sissy", "Pete" and "daddy".  Yep, Mom always gets the short end of the stick.  He has probably 10 other words too, but those are the ones I hear him scream all. day. long.  Especially Pete right now.  Yesterday, he found Pete's invisible fence collar, grabbed it and ran around the house for a solid 30 minutes yelling "PEEEEEEEETEEEEEE"!

Just this week he has started working on some fine motor skills.  He works on putting his coins in this little pig toy we have for hours.  That, and building with his blocks.  He loves pulling all my plastic cutting boards out of my cabinets, "shoot"-ing his basketballs, dancing and giving kisses.  Our little guy may be a wild one, but you can see his tender little heart come through.  He LOVES giving kisses right now.  He walks over to Elena saying "sissy, sissy", sticks his hands on her chest and gives her kisses.  She always starts laughing.  He does this with Pete all day too.  Pete usually groans and gets up and leaves the room.  He's pretty generous with his kisses, happily giving them to everyone.  He even gives a drawn out "mwwwwwaaaaahhhh".

I love watching him grow and change, but I really love seeing his personality emerge.  Cal is always on the go with Elena and me and happily goes along.  He is busy, and into everything but loves to explore and try new things.  He likes running around with the big kids and is pretty social...we'll definitely need to work on our stranger danger!  He keeps us laughing with his dance moves, his "Cal language" and his giggle.  He loves his sister and brings her toys to play with, often playing ball with her which translates to him throwing the ball at her, making her laugh.

Calvin, watching you grow is our delight. I pray every day that your heart stays soft, your laugh loud and your love for your sister strong.  We love you Calvy!!

Cal's very own language!

Cal's victory dance.  He's bring back raising the roof.

Summer is Wrapping Up!

What a wild couple weeks it's been.  Summer is flying by and we're trying to keep up.  Though it's been busy, we've had so much fun the past few weeks.  With only two weeks left before Elena's fall schedule begins, we're going to enjoy a little bit of free time after this wild summer!

We celebrated Elena's birthday last weekend.  She had a "splash bash", where we invited her family and buddies to the park close to our house that has a splash park.  One of Elena's wheelchairs is perfect for pushing her through the fountains and she loves it.  We all had so much fun watching the kids run wild!  The party was a success and we all came home exhausted!

Elena's last week of camp at the Jackson Center was Thursday.  She had SO much fun this summer.  I'm so glad she was able to manage the full day schedule without being to exhausted.  Every day when I would pick her up, her aide would tell me how much fun she had and how chatty she was.  Elena totally loves being social.  They had three different field trips over the last few weeks.  The last one was to Bradford Woods, a great camp in southern Indiana.  The kids went hiking, canoeing and fishing.  Some got to go down an adapted zip line, shoot slingshots and a few did archery.  We were so glad for the this experience for Elena.  It gives her a little more independence and freedom to do all these fun activities on her own with her friends without Mom hanging around.  She's had such a fun summer!

The next two weeks we hope to enjoy some pool time, if the weather cooperates at all, maybe a trip to the Children's Museum and the zoo if we're lucky.  Our days get long if we don't keep busy.  Once school starts and Elena is back at the Jackson Center, we'll be lucky ever to have a "free" day so we'd better pack it in now!

Elena on the bus headed to her field trip

1st fish!

Elena at the Splash Park

Cal liked his sister's cupcakes!