For when you don’t understand Why.

Jill’s walking has been a direct answer to prayer.

With every passing day, she is stronger and steadier.

In fact, it’s become almost that we don’t even notice any more.  As if we are so accustomed to her toddling around the house like the others that we’ve taken it for granted.

Except that we haven’t really.

Oftentimes I just watch her.  Amazed.  She’s always been a bit of a Light Switch.  With every physical milestone, I can remember thinking “how will she ever be able to…roll over…hold a ball…drink from a sippy cup…sit up…crawl…walk…”

Each stage seemed impossible for her weak limbs.  I distinctly remember watching her try to simply lift a plastic cup.  One of the lighter ones.  Only half full.  Those extra few ounces of water too much for her.  And it was excruciating to watch.  So much effort.  So much determination.  Concentration.  Just to lift a cup to her lips.  I often suppressed a scream at mealtime.  It hurt to watch.  It hurts to remember.

I remember watching other children in walkers, coming and going from therapy sessions.  Feeling defeated.  The ability to even hold her own weight up seemed like asking us to climb Everest.  Absurd, really.

But she did.  And she does.

One day she topples over when seated, and just a few days later not only is she sitting up, but it’s as if she has been doing it her whole life.

Off.  On.

Like a switch.

And so it goes with walking.

One day, soon after moving into this one story home with the glorious natural light, and she is waltzing across the living room to her bowl of cereal as if she has done it for years.  Grinning.

I tried to not make eye contact at first.  Didn’t want to disturb her concentration.  Scare her.  Jinx it, really.

I didn’t even want to share the news of her walking for several weeks.  Partially because I wanted to Protect It.  Honor It.  Allow it to be ours.

But really, I was scared that once I told the Universe, she would stop.

It turns out I’m more superstitious than I ever cared to admit.

But it didn’t matter.

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She was walking.

Off. On.

And she continues to.  And it’s like a whole new world has opened up for her.

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She plays with her siblings in ways she was never able to before.  She still can’t quite keep up, but there is so much more interaction now.  She and the Porkchop are particularly fun to watch.  I’m certain they have their own secret language.  They babble to one another as if it is all real and true, and giggle and laugh and fight.

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It truly is like I have twins again.  Both physically and developmentally they are on almost the exact same level.  Parenting is a whole new and different kind of hard now.  Again.  The usual.

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It will be equal parts exciting and potentially heart breaking to see how the next year or so fares for them.

Will Owen pass his big sister up, will she trot along at the same pace, will she zoom ahead in the blink of an eye.

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Who will Jill be when she is 21?

This has always been the Million Dollar Question.

She has always been the little enigma.  We have never been told she would be This or That.  That she Couldn’t or Wouldn’t.  In many ways, she isn’t Proving Doctors Wrong.

The truth is that NO ONE HAS EVER HAD A CLUE.

Three days old, shivering and shaking in a NICU isolette, we were told to expect anything.  Anything at all.  From a child who society would describe as a vegetable…all the way to 100% full recovery.  And anything in between.

As she gets older, and this Light Switch gig continues, I wonder how many more times it will flip on.  When and if it will stop.  I wonder if she will be able to control the shaking.  I wonder if she will speak in full sentences.  I wonder if she will be able to read.  Write.  Have a job.  Get married.  Have babies.  Rock grandbabies.

I’ve never been one to want family and friends hiding behind furniture, jumping up when I walk through the door.  I prefer planning.  Spontenaity is a struggle.  Boring is my love language.

And so, Irony.

But the truth I must remind myself of is that Jill is Jill.  And she is a Whole Person regardless of the milestones we can check off on the Kindergarten paperwork.

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Even if she never sat up.  Or could lift that sippy cup.  Or could chase her baby brother across the room.  EVEN IF SHE NEVER WALKED, SHE WOULD BE WHOLE.  She would be perfectly perfect in every single way.

I often think of my fellow mamas navigating diagnosis’.  Wringing their hands.  Advocating.  Pouring over stacks of paper.  Bills from doctor’s offices piled high.  Smiling at their littles behind water logged, exhausted eyes.  Maybe even glaring at me and mine.  And I want to take each one of them and say this:

“It is hard.  I know.  It is so. damn. hard.  Have hope, sweet friend.  Dream and wish and pray for outcomes.  But know that your baby is your baby and IS WORTHY OF ALL THE LOVE IN THE UNIVERSE no matter what.  Even if the prayers you beg the Heavens for seem unanswered, even if the news turns for the worse, even if they Never…they are just who they were meant to be.  And you are their mama just the same.  Celebrate if celebration is called for.  Jump for joy when they exceed Expectation and make dust of odds, but do not despair if those days do not come.  Because Worth is Worth regardless of milestones.  Your motherhood and their personhood still matters.  Worth.  Its all Worth it.  They are Worth it.  You are Worthy.  And you roar your terrible roar and gnash your terrible teeth and roll your terrible eyes and show your terrible claws when someone hints at anything but that most holiest of Truths.  Mama Bears are the fiercest of them all.  Keep on keeping on, mama friend.  And have cake.  Because life is all about cake, really.  Swear it.”

 

 

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett
jeannett

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Comments

  1. 1

    This is so inspiring. Nothing short of a miracle.

  2. 2
    Shawna@nottheformerthings.com says:

    Exactly…and cake.

  3. 3

    Inspiring! What a blessing.

  4. 4

    This made me cry…and force both my kids to snuggle with me. Every parent should read this post!

  5. 5
    Shannon Parker says:

    I have had to remind myself that “Fin is Fin” (my little guy) so many times I’m ashamed to admit it. Children with special needs remind us of our constant desire to want more, but it’s enough that they are here and with us and we love each other with crazy big love. My husband is so much better at staying satisfied with the moment than I am and I find myself always wanting a crystal ball for his future. But watching and waiting keeps things oh so interesting :-). Jill is a lucky gal and you are a lucky mom.

  6. 6
    Brittnie (A Joy Renewed) says:

    “Even if she never walked, she would be whole.” – This phrase speaks volumes to me as a mama to a special needs kiddo.

    Needed this. . . so true. Thank you.

  7. 7

    I just wish that last photo had the bakery in the background instead of the meat counter. Rock on Jilly.

  8. 8

    Beautiful! So happy for her.