Jumpin’ Jehosaphat!

Do you remember the very first time your child successfully jumped?  I do.  Wanna know why?  Because A) it just happened this past weekend, and B) this is something we’ve been working on for a loooonnnngggg time.  I honestly thought we were still quite a ways off.  But it happened. 

At 3 years, 6 months, and 21 days old – Ellie jumped.  And today, she even showed her therapist at school that she is now jumping.  I also know the exact day when she took her first solo steps – and jumping came exactly 1 year, 2 months, and 8 days after learning to walk.  Boy, oh boy, did this momma cheer.  It also happened while we were at the Boonshoft Museum of Discovery and I was worn thin from a long day of running and chasing kiddos… and Ellie was being grumpy.  I’d just changed her diaper (which she vehemently protested while laying down) – but once up, she jumped… and turned my grumpy into pure joy.  This kid – I tell ya!  Okay.  That is all.  I had to put this in the blog for posterity.  Carry on with your day!

A big shout out to the MVDSA for hosting our World Down Syndrome Day celebration at the Boonshoft.  Crazy fun - which lead to crazy tired.

Playing in the sandbox/landfill - rubber "sand" is a brilliant idea.

 

Building a tower... and knocking it down with great laughter.

Fossils??  Lance was in his element here.

This is just funny.

Mary and I rode down together.  Her kids were much more calm than mine - JEALOUS!

Here they were all watching the animal demonstration.

Mack and Ellie working in the pizza cafe. 

Logan & Ellie making pizza.

Kaleb was taking orders.

Logan & Ellie learning about recycling... errrr, spinning the gears.

Kaleb & Ellie at the giant water table.

Lance petting the hedgehog

Grant petting a hissing cockroach.  This makes my skin crawl.

Okay - Ellie just drug a whole bag of puff corn out and if I don't go catch her, it's likely to all be eaten in the next 3 minutes.  Monster!

What does World Down Syndrome Day mean to a family like ours?

I thought long and hard about this question over the past week.  See, in our household, we celebrate ability on a daily basis.  We cheer for every inchstone and welcome friends with Down syndrome into our home and into our lives on a regular basis.  Our boys see right through the diagnosis and celebrate the child or adult behind it.  Thank God for that! 

Actually, that’s a little bit of a lie.  They see Down syndrome – they can pick out a person with Down syndrome in any room.  But their world is much different than the one I knew.  See, the day we received a Down syndrome diagnosis for our unborn child, I wept.  I wept for a long time.  My heart was shattered thinking of all of the things my daughter wouldn’t do – or I wouldn’t get to experience as a mom through my daughter.  I had no idea.

I made these shirts for the boys to wear today for World Down Syndrome Day.  When I excitedly showed them to the boys, Lance wasn’t a fan.  When I finally had time to sit him down and talk about why he didn’t like this shirt, something he said really struck me.  He repeated it yesterday when I told him we were taking this photo later.  He said, “I don’t like that shirt because it says that my sister has MORE of something than someone else.  And Mom, it’s not nice to brag.”  WHAT?  At first I was a little taken aback.  I thought maybe he was ashamed to be wearing the shirt… announcing to the world that his sister is different.  Turns out, he was hesitant to wear the shirt because telling the world that she had Down syndrome was bragging. 

Oh, thank you sweet Jesus! 

I didn’t have the heart to tell him that we’re wearing it to CELEBRATE Down syndrome in a world where other countries are celebrating the elimination of babies like his sister.  I didn’t have the heart to tell him that his sister will be seen as “less than” to some people… and we are busting our tails to change that.  I couldn’t tell him that kids like Ellie are institutionalized and marginalized all over our world even today.  I didn’t have the heart to be completely transparent about how I used to feel about Down syndrome.  How would he feel if I told him that knowing his sister had Down syndrome had me in tears for so long?  How would he see his sister then?  I can’t bear to think of that.

To Lance and Kaleb, Ellie is Ellie.  They know she has Down syndrome.  They know that means she has a lot of appointment and that she had therapists at our house all the time.  They know that it will take her a little longer to learn to do some of the things that other kids do – but they also know that in time, she’ll conquer all of the things she sets out to conquer.  Kaleb is jealous that Ellie gets to ride a school bus because she has Down syndrome.  How funny is that?  Well, he just knows that she gets to ride a school bus because she had lots of therapy when she was little and the other kids who ride her bus also had therapy.  But he also knows that she had therapy because she has Down syndrome. 

My boys have their faults, just as every other kid does, but their perspective on inclusion and acceptance is remarkable.  I wish that every family had a chance to experience life as our family is experiencing it – I really do.  It’s incredible.  In a world where the “R” word is still used on a daily basis, we desperately need kids who have grown up with a sibling, cousin, or friend with a disability.  We need their innocent love and respect for all of humanity.  We need others to see that we really do have something to brag about when we know and love someone with Down syndrome.  We need the world to see the ability.  We need the world to see the beauty – even in the midst of struggle sometimes.  We need a world that is proud of diversity instead of a world trying to eliminate it.  We need people with Down syndrome – and they need us to speak up against discrimination and bullying.  They need us to show the world just how amazing life is with them in it.  They need us to educate the public and push for more accurate delivery of a diagnosis.  And I need my boys to show me the way because I did not grow up with a sibling who had a disability.  I did not grow up knowing this beauty.  If someday they’re sitting with their future wives and receiving a diagnosis – I pray that they celebrate it, knowing how lucky they truly are and how lucky their friends and family are to experience this with them.  I pray that they’re eternally better people because of their sister.  Those same little boys fight over who gets to live with Ellie when they’re grown if Ellie doesn’t want to live on her own (notice I said “doesn’t want to” and not “isn’t able to”).  They want to take care of their sister – they absolutely adore her.

THAT, my friends, is what World Down Syndrome Day means to us.  Side note:  this is the first year that we've planned ahead for WDSD and made up materials and such for the kids to bring into school - and the snowpocolypse of 2018 arrived and delayed those plans.  Soooo - looks like we'll be wearing our crazy socks to school TOMORROW and bringing stuff for our classes.  Oh well.  I guess it's appropriate to have patience for something like this, right?

About the shirts:  we're actually having a bunch of these made - with custom verbiage so that anyone in our giant Down syndrome network could order one.  We'll have shirts that say, "My sister has more chromosomes than yours does", but we'll also have ones where sister is replaced with: brother, kid, grandkid, cousin, niece, nephew, and friend.  If you can think of something else you'd like on these, we might be able to work that out.  We'll start selling these soon as a fund raiser for Walk Your Socks Off 2018 (which will be held May 19th).  If you're interested in buying a shirt, keep an eye out for my post soon.

We sent out reminder cards to classrooms that included facts about Ds for parents.  Lance will be reading a book to his 1st grade class and they'll be coloring these butterfly pages.  There are facts about Ds geared for kids on the back of the coloring page.  Each kiddo in Lance, Kaleb, and Ellie's classes will get a sticker with the Ds ribbon that says, "Together we can make a difference" and a bag of colorful goldfish crackers with a note saying, "World Down Syndrome Day March 21st - We are more alike than different"  Cards and coloring page are compliments of Three with a Twist

We didn't celebrate Ellie's 1st WDSD... because it was our 1st day home from Cincinnati.  We celebrated by training our first home health nurse and having a mental breakdown.  The photo above was from 3.21.16

World Down Syndrome Day 2017

Here is a close up of the shirts.  The math nerd in me was super excited to make Ellie's 47>46 shirt, too.  I wish B had taken a picture of the shirt he made last night and posted it... it's pretty stellar.  I made these shirts... the ones we'll sell as a fund raiser will be much better quality - screen printed ones.  

Have I told you that for Pi Day in high school, I made shirts that were covered in colorful bubbles on the back and each bubble had a number in it... I wrote out Pi to the 20th decimal, I think.  The math nerdiness is strong with this one!

Faith in the Valley

Last Friday, I sat through some great discussion at our Life Group meeting.  A topic came up concerning a child who was recently diagnosed with an aggressive form of cancer.  The woman sharing the story said that it was remarkable how strong the faith is in the mother of this child.  She said, “If I were in this position, I don’t know that I’d be that strong and that sure.”  “Yes you would,” I said.  Because I knew for sure what that looked like.  I shared a story with the group that I’ve never shared before… maybe not even with Brandon.  Three years after this event, the feelings were still so raw and deep that I couldn’t get through the story without my voice breaking up.

As I’ve shared many times, a few days before Ellie’s first heart surgery, we were told that the future looked dim for her.  The chances of her surviving the surgery weren’t great – and the chances of her having any success afterwards were nil.  I’ve shared that… but I don’t know that I’ve shared what happened between that day and her surgery. 

We’d just been transferred from CICU (where the staff knew her and me) to the PICU to wait for surgery.  We weren’t familiar with PICU… and we were meeting all new staff members at a time when I was a complete wreck.  I basically spent the next two days sobbing.  At all times, my face was red and blotchy.  My eyelids closed wonky because of how swollen they were and my eyes were terribly bloodshot.  I wasn’t sleeping – who could sleep under those circumstances?  I spent my days rocking Ellie (and bathing her with tears) and sitting in front of my laptop looking out the window at the cold, bleak world in front of me.  I listened to the choppers land on the helipad above us and to Matt Hammitt’s “All of Me” album on repeat and prayed endlessly.  I knew I was about to hand my baby over to surgeons and anesthesiologists – I knew there was a decent chance that I’d never see her alive again.  So I sobbed and prayed and stared out a window, vacant of anything but hurt.  I’m sure that the nurses already had a call in to get me some psychiatric help if things didn’t go well.  I looked like a busted up mess and rarely looked up to meet anyone else’s gaze.

But here’s the thing:  about 24 hours before we were set to send Ellie off to the OR, something washed over me and my prayers turned from begging – to surrendering.  Looking back, I’m not even sure how this was possible, and I can’t imagine doing it again.  But I can tell you with absolute certainty that when you reach the depths of what your heart can endure, God steps in and lets you entrust your future in Him.  It’s hard to explain.  But imagine that your child is scared or hurt… happens to all of them, right?  What do you do?  You bring them in, cuddle them under your arm, and say, “I’ve got you.  You can trust me.  I’ll take care of you.”  Right?  Well, let me tell you, God is that parent… but His love is even stronger than anything you can imagine.  When I was pouring my soul out then, He brought me in… He held me tight and asked me to trust Him.  I knew He’d take care of me.  My prayers changed that morning… and with that, I found some peace, and still had plenty of sobs.  I reached a point in my sorrow where I honestly began to repeat, “Your will be done”.  I had no idea what His will was for Ellie in that moment, but I knew that I was completely powerless in the situation.  I knew that we were either in for a miracle or the most extreme heartbreak imaginable.  Either way, I had no say in how the next 24 hours would go.  I had to hold on tight and let someone else steer.  God looked down and saw his daughter staring in the face of her enemy – petrified of what would be - hope waning as she held her own baby.  He gave me strength and peace in surrendering Ellie over to Him.  

In the wee hours on the morning of surgery, I was up holding her, rocking her in her sleep.  I was humming the words to the Matt Hammitt song I loved so much (humming because I couldn’t physically make any words that morning).  When the nurses came in, Brandon and I gave her the pre-surgery bath of cholhexadine and the smell of those wipes is still ingrained in my memory.  We handed her off that morning and fell into the arms of our parents as we waited those long hours.  But the tears were gone… maybe I’d completely run dry of tears.  The awful period where I poured my soul out for days on end was over.  There was a peace that wrapped around me like a warm blanket.  It allowed me to talk and laugh and focus on our family while we waited for her surgeon’s report.  God was there.  He pulled me in just as I have my children many times, He held on to me and begged me to trust His plan.  He let me know that He’d take care of me no matter what and He loved me.  Never in my life have I been so sure of who my heavenly Daddy was! 

I’ve met countless other parents (mostly moms) who have walked similar paths.  I can tell you that everyone prays in that surgical waiting room.  I can tell you that when things are the worst, faith runs full throttle.  If you want to see faith that can really move mountains, talk to a parent whose child is critically ill.  Is it awful that faith shows up stronger than ever in times like these?  Maybe.  But I can speak with absolute confidence when I say that we have a God who protects, who loves, who strengthens the weak.  We have a God who nourishes and speaks life into you when you cannot go on.  He takes you in under His mighty arms and asks you to trust in Him.  He performs miracles and gives peace when the miracles don’t happen on this side of heaven.  I know this because I’ve seen it with my own eyes and felt it in my own heart. 

We don’t have to be at the end of our ropes to trust in Him.  We know that.  He loves us and cares for us in our tiny “emergencies” just as He does on our darkest days.  Over the past week, I’ve been trying to focus on getting back to the place where I heard His voice… back to the place where I knew He was there beside me every day.  I don’t want to be back in the hospital to know this.  I need to seek Him out in my daily life because I know what it feels like to have Him sit next to you and wrap you in His endless love.  I need that on my worst days, of course, but I need to seek it more on my good days, as well.  I have a few people in my life who are staring their enemies in the face right now… women who are walking into some of their worst fears.  I pray that they feel God’s presence in a tangible way right now.  I pray that they can see that the enemy is a liar.  There’s a song by Zach Williams called “Fear is a Liar” and it’s been running through my brain lately – I think it’s a song that can help these women… and can really speak to us all.  I love you all and pray that you feel God’s presence in your life… that you know He takes you into His embrace to bring you comfort and peace – even in the midst of a storm.

A look back at that very dark time for us… plus some recent happiness below.  Thank you for following along.  If you need some more musical inspiration… Toby Mac is one of my favs.  Listen to “I just need you”.  He quotes Psalm 23 in it… and it’s perfect.

I couldn't look at the camera with my busted up face.  

Holding Ellie before we had to give her the pre-surgery bath.

Can you feel the weight on his shoulders?  Ugh.

Buggy right before she was wheeled into the OR.  I'm pretty sure she's praying, too.

Fast forward to the present:

Kaleb during his wrestling banquet this weekend - with coach, Daddy

Earlier last week - a sick Kaleb

And a sick Buggy... finally sleeping.  She's a monster when she's sick.

We had one nice day in Ohio... nice enough to play outside after school

Kaleb painting the planets for his solar system

And Lance - with a little more precision in his painting.

Kaleb at the playground (on the one nice day)

And Lance spinning on the swing

Ellie reading a book to her baby... sooo sweet.

Psalm 23

1 The Lord is my shepherd, I lack nothing.
2     He makes me lie down in green pastures,
he leads me beside quiet waters,
3     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
4 Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

5 You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
6 Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.