Time is Love

Isn't it funny how life can change your perspective?

And how you can think you have it figured out and then realize you had it all wrong?

I used to think it was really important for my house to be super clean (and don't get me wrong, I'm not saying my house was always super clean) and for life to be organized.  I'd get really stressed if I wasn't ahead of schedule on everything.  Type A.  Or maybe Type AAA.  ;)  

When Savannah was a baby, I never napped.  I was always working, cleaning, or doing some sort of project while she rested.  After all, time is money, right?

Today while driving home from therapy, I heard a song on the radio... and I thought it was so true.

I had it all wrong.  Time isn't money.  Time is love. 

And a few years later, and maybe a little bit wiser... 

I find myself spending more time cuddling, rocking, napping, watching animated movies, laying in the yard and picking out shapes in the clouds, and letting the kids make a mess.

Because after all... the projects and the mess will be here tomorrow. 

And the little girls who think sleeping in Mommy's bed is the greatest thing ever?  Not so much.

Time is love.

I know I gotta put in the hours and make the money while the sunlight shines.  But anything I gotta get done, it can get done some other time.  Time is love.  Gotta run.  I'd love to hang longer but I've got someone who waits for me and right now she's where I need to be.  Time is love. Gotta run.

Cincinnati Adventures

Miss B had to head back up to her fabulous team of doctors in Cincinnati for further testing and evaluation.  We had to leave on Father's Day... so we took Daddy out to breakfast first.

Ice cream sure makes a long car ride seem shorter.

Ice cream + headphones = parental bliss.

We try to make our trip to the hospital a fun one so that its not just bad memories associated with a long drive.  So we went to cool restaurants... 

And walked across the Ohio river... 

And got lots of snuggles.

We visited the aquarium where Miss Fearless was happy to touch any animal.

Her sister was cautiously willing.

The girls enjoyed petting the sharks.

And Savannah's favorite part was the penguin show.

Brooklyn's favorite part... naptime.  :)  

We enjoyed our adventures in Cincinnati!

Sweet Summertime

The Death of My Dream... the Birth of His Glory

“Although the threads of my life have often seemed knotted, I know, by faith, that on the other side of the embroidery there is a crown.”
- Corrie ten Boom

I've been doing a lot of thinking lately.  Admittedly, that isn't always a good thing.  But this time it might be.

It is really difficult to understand the suffering of a child.  It is excruciating at times to be the parent of a suffering child and try to make sense of it all.  Why are some children born healthy and others have disabilities?  Why do some children struggle when others sail through their milestones?  Why are perfectly deserving parents robbed of sweet babies before they get to hold them through a painful miscarriage?  There are some things I feel as though I will never understand.

In addition to trying to make sense of the seemingly senseless, the parent of a special-needs child also faces a grieving process.  While they may not have lost a child (yet) per se, they have lost a dream.  Whether you realize it or not, when you imagine your life down the road and the joys and challenges it will hold, you often picture your future children.  And while you may anticipate a few stitches or broken bones, very few parents anticipate days in a children's hospital or a cancer ward.  Most imagine looking at cute strollers, not wheelchairs.  And when they picture well child visits, they imagine leaving with a baby fussy from vaccinations, not in tears after a conversation with a doctor about how delayed their child is.  They imagine their children graduating high school, getting accepted into college, being loved, getting married, and having children.  It never occurs to them...it never occurred to me... that these things may not happen.  

At what point are my dreams selfish?  For a long time I've told myself, and it is somewhat true, that I dream these dreams for my child.  That I am sad because she doesn't get to be normal.  That I don't want for her to hurt.  And while all of those things are both true and noble... there's a bit more to it than that.  Some of it is selfish.  I don't want to spend my free time in a hospital.  I don't want to lose friends because they don't understand what we are going through.  I don't want to deal with home health deliveries.  When I take my kids to the pool, I don't want it to be for aquatic therapy.

Once I allowed myself to admit that, I realized that I might have it wrong.  My dreams... are just that.  They are mine.  And what makes them better than the plan that my Maker has laid out for me?  Sure, I think they sound better...two healthy children versus one healthy child and one medically complex child.  But I have very limited vision... only a snapshot view of a huge screenplay.  And I don't know what happened in the previous scene, or what happens in the end.  So it isn't really fair for me to spend my days moping about wanting a rewrite for my scene... is it?

And on that note... while on many levels my children are mine... they are really just on loan to me from above.  And when I keep that in perspective, its a lot easier to let go of those milestones or the weird looks from other parents in the McDonalds playplace when my chunky two year old can't climb the stairs.  Because at the end of the day, despite all of the heartache and exhaustion... I wouldn't want God to loan that goofy girl to anyone else.  She may have a tendency to land herself in the hospital... and I may want to scream every time she has a seizure and we take a few steps backwards... but I wouldn't trade the hugs, silly smiles, or cuddles for anything else in the world...not even the perfectly healthy child I dreamed of.

I can't wait to see what God is going to do with Brooklyn's life... I know without a doubt... that while I have no idea what the future holds for her... I know there is a plan... and that God loves to use the cracked and broken vessels.  I'm so blessed to get to be along for the ride... and to be another cracked pot in His beautiful collection.  And I can't help but think that as I was rocking her to sleep tonight singing "Jesus Loves Me" and she was randomly repeating words back to me...

"Jesus loves me, this I know..."
"Me. Know."
"For the Bible tells me so..."
"So!"
"Little ones to him belong...they are weak but he is strong."
"Strong!"
"Yes, Jesus loves me..."
"Yes!"
"For the Bible tells me so."
"So!"

  ...He was smiling too.



"I can count a million times people asking me why I can praise you with all that I've gone through.  The question just amazes me.  Could circumstances possibly change who I forever am in you?  Maybe since my life has changed long before these rainy days, its never really ever crossed my mind to turn my back on you my Lord, my only shelter from the storm.  But instead I draw closer through these times.  So I pray, bring me joy, bring me peace, bring the chance to be free.  Bring me anything that brings you glory.  I know there will be days when this life brings me pain, but if that is what it takes to praise you, Jesus, bring the rain.  I am yours regardless of the dark clouds that loom above because you are much greater than my pain.  You who made a way for me, by suffering your destiny... so tell me, whats a little rain?!"

Dancing Queen

You can dance, you can jive...

Having the time of your life...

See that girl, watch that scene, digging the dancing queen.

 

[Thanks to Scott Mullins for these professional-quality photos!]

Worst Day Ever

Perspective is sometimes a good thing.  In many ways, I think I've been given a gift of perspective.  I get to see things and experience things on a level that few others do.  Other times, it makes me want to take my pink purse and whack people over the head before running off in my cute heels. 

I was standing in line at Target recently and heard a girl say, "Oh my gosh.  I had the worst day ever.  I overslept and then it was raining."  I'm sure to this adorably vapid teenager, that was probably worst case scenario.  To give a little context, she was wearing a mini skirt and furry boots together... so just consider the source.  But let me just tell you... that my worst day ever occurred this week... and it had nothing to do with oversleeping or rain. 

My kids got afflicted with the plague referred to as hand, foot, and mouth disease this past week.  Poor Savannah got it first, and I assumed she was bluffing.  Before you all shake your heads and cluck your tongues about how I never believe her, let me just assure you that for every time she tells the truth, there are 100 exaggerations.  She takes after her father, I tell you.  She is absolutely dying if she gets a headache, or if it is hot, or if she cant find the shoes she wanted to wear, or if she gets a bug bite.  So pardon me if I don't believe her every time she assures me that this time she really IS sick.  But within a few hours of her claiming that she did NOT feel good, she had a very high temperature and blisters in her throat.

Obviously, Brooklyn got it next, because I would not be granted the mercy of only one child getting the plague.  And watch out, because it is probably coming to a church nursery or elementary school near you soon.

So, after sleeping approximately 30 seconds for 2 days, the second child started with the high fevers.  God bless my mother, who came to my rescue when I wasn't sure if I should just join the kids in the screaming or put them out of their misery.  Kidding, kidding.  Mostly. 

Thankfully, they only were both sick for 24 hours, but what a long day it was.  And then the night was even longer.  If one wasn't screaming, the other one was.  And the hubby was working night shift.  Sweet mercy, I really am not sure how I survived it. 

Savannah got well, but Brooklyn steadily grew worse.  She refused to eat, drank very little, and her fevers didn't budge with ibuprofen, tylenol, ice chips, or a lukewarm bath.  At one point her temperature went to 105.2, after motrin.  Her pulse was high, and her breathing was rapid.  It wasn't looking good.  I debated taking her to the ER, but figured they couldn't do much else, and I really wanted to avoid the hospital.  I kept in close touch with our pediatrician and Brooklyn's fever started to come down slowly.  I thought we were on the mend, but then it suddenly spiked back up.  She started to experience difficulty opening her eyes, and we decided it was time to head to the ER.  I strapped her into the car seat and started to make the journey.

Part of the way there, Brooklyn lost head control and the ability to respond.  I pulled over and called 911, and the rescue squad came to get her.  Her temperature, heart rate, and breathing rate were all high, and she was quickly losing control of her muscles.  After four minutes of being unresponsive, they loaded her onto a stretcher and sped off to the hospital at emergency speed.

I've always been a little carsick, and being in the back of an ambulance, moving very rapidly while answering questions, making phone calls, and trying to get your child to respond can really do a girl in.  All of that pregnancy sickness I lived through came in handy as I willed myself not to puke.  An IV was started, heart monitor hooked up, blood was drawn (and redrawn later... it was so hot when drawn out the tests read weird), the neurologist was called.  Lots of prayers were prayed.  As Brooklyn received medicines and fluids, her fever, heart rate, and breathing rate slowly began to come down to a normal range. Her muscle function is yet to return to normal... but right now we are just thankful she is here.  For a little while, we weren't even sure that was going to happen... and that was the worst day ever.

We are headed up to Cincinnati in a week to meet with the Epilepsy Surgical Team.  They've had some great success stories from their procedures.  We are nervous but excited to hear about what they can do for our girl.  We appreciate your continued prayers and support as we await what the future holds.

You'll Be In My Heart

Miss B had her very first ballet recital on Saturday.

She danced with the "Angels from Heaven" class at our local dance studio, a free class for special-needs students where experienced, talented dancers help them to master the moves.

These girls dedicate Saturday mornings to helping little ones with special needs.

I admire them so much.

Here is Miss B with Carie, her dance partner. 

Carie brought Brooklyn a ballet bear... we may never get her to let go of it again.

The angels danced to "You'll Be in My Heart" by Phil Collins.  

The song could not have been more appropriate. 

The entire civic center sat spellbound as they watched the magic unfold, and there wasn't a dry eye in the place.  And at the end I had to catch my breath as they all stood...

and gave the angels the only standing ovation of the night.

We couldn't be more proud of our little angel.

Or more thankful for everyone who made her night so special. 

"For one so small, you seem so strong..."

"I know we're different but deep inside us, we aren't that different at all." 

"You'll be in my heart...

Yes, you'll be in my heart.

From this day on, now and forevermore.

You'll be in my heart, no matter what they say.

You'll be in my heart, always. 

Always and always."