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The News (“She Will Never See Like We Can See.”)

This is the last week of #SurvivorSeries.  This week I’m sharing a Survivor playlist (**fist pump**), hosting a giveaway (holla), and we’re talking about surviving “The News.”

There is news, and then there’s The News.

The News is cancer.  Autism.  The affair.  Fired.  The News is cops at your door saying, “There’s been an accident.”   The News comes in all shapes and sizes and it is always catastrophic.  An earthquake in your soul, cracking and upheaving the foundations of your life.  The things you thought would never change – change.

Tomorrow, I’ll share a short post (because when you get The News, you can’t be bothered with things like WORDS or ADVICE) about how to start surviving The News.  Not how to get through or find hope.  Just how to live.

Today, I’m re-sharing a post about a time that I received some News.  It is one of the first posts that ever appeared on this blog – I copy/pasted it from a Word document I’d been using as a journal.  I deleted all the cuss words.  (If you’re getting News right now, email me.  I’ll send you the cussy paragraphs.)

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A journal (literally) of the hours, days, and weeks following Madeline’s diagnosis.  That you may share in our (eventual) joy and amazement.

April 17, 2008
“I’m going to be honest with you Mrs. Conner; I’m not sure how well she can see at all.”

Deep breath.

“She has decreased vision; probably congenital.  It’s possibly an optic nerve problem.”

The weight of a continent is on my chest.

“She has a searching nystagmus – the reason her eyes roll is that she’s looking for anything she can see.  I wish I had better news for you.  She needs to go to Emory for further tests.  I’ll make you an appointment for next week, but you need to know that I don’t think time will matter much here.  I’m sorry.”

I must look like a frightened animal.

Wait, what?  You’re telling me there’s something wrong?  Like, really wrong?

Oh, baby.  My baby.
Have you been living in darkness this whole time?
Have you ever seen my face?

The world is spinning and I am sick.

I can’t get out of this office fast enough. Something inside of me has snapped and I am consumed; all I want in the whole world is to get home and hold her.   I don’t want doctors, I don’t want information.  I don’t want encouragement, I don’t want prayers, I don’t want lunch.  I need to get home NOW.  I need to get home and hold her all day long.  I’ll feed her and rock her and sing to her and let her fall asleep on my chest.  I’ll kiss the top of her peach-fuzzy head and tell her everything will be okay.  We’ll take care of those eyes.  Those big, beautiful blue eyes.

Later that evening
There are five days before our appointment at Emory. 120 long hours.  That’s a lot of time to think.  Is it something I did while I was pregnant?  Something I ate, maybe?  Did I not take enough vitamins?

No – I’m assured by a still small voice, “‘Who sinned, this man or his parents, that he was born blind?’  ‘Neither this man nor his parents sinned’, said Jesus, ‘but this happened so that the work of God might be displayed in his life.’” John 9:3.

What if it can’t be fixed?  They can fix anything these days, right?  I’m not afraid of surgery or medical bills.  I’m afraid she’s going to have to live with whatever this is for the rest of her life.  In my heart, I think I already know.  I’m really not even worried – I’m just sad for her.  Yes, fear has given way to sadness, and it is unbearable.  It’s not fair.  What did she ever do?  She’s just tiny and small and soft.

God is good all the time.  My life has changed – God has not.  He’s good – and I know that.

Think clearly, Kate.  Worst case scenario: she’s blind.  Helen Keller was blind, Fanny Crosby was blind, Ginny Owens is blind.  Blind women can live full, meaningful lives.  I wonder how hard it is to learn Braille.  Oh, God, don’t let other kids make fun of her.  Please, please don’t let them make fun of her; she’s too sweet.  I will level some idiot fourth grader to the GROUND if he teases my Madeline for this. Oh, Lord, don’t allow her to feel un-beautiful for even a minute.

And here springs my very first positive thought:  This is why God made me to love words, why I learn languages well.  This is why music is so close to my heart.  Why He made me a teacher – so that I can communicate with my daughter in ways that have nothing to do with vision.

After all, this is not a surprise to God.  To us, certainly, but not to God.  Madeline was born this year, this time, to these doctors, and to these parents.  Me and Dan.  I was created to raise her.

“All the days ordained for me were written in your book before one of them came to be.” Psalm 139:16

I’m thinking of Hannah Hurnard’s words.  “…In the life of a child of God there are no second causes, even the most unjust and cruel things, as well as all seemingly pointless and undeserved sufferings, have been permitted by God as a glorious opportunity for us to react to them in such a way that our Lord and Savior is able to produce in us, little by little, his own lovely character.”

It will be glory if, somehow, we live more like Jesus because of this.

April 22, 2008
Optic Nerve Hypoplasia.
“See, she doesn’t blink or squint like most children do when I shine this light in her eyes.  Her optic nerves are 5 percent of normal size.  Think of a garden hose, the smaller the hose, the less water that can pass through it.  Optic Nerves connect her eyes to her brain in the same way; so with underdeveloped nerves there is no way for information to pass from her eye to her brain. Her eyes are healthy; it’s the nerves that caused the vision impairment.”

Let’s cut the doctor speak.  I can read between the lines.  You can say ‘blind,’ I won’t freak out.  My little girl is blind.

“She will never be able to see like you and I can see, but it’s possible that her vision may improve marginally by the time she’s one year old.”

Marginally.  She may be able to tell the difference between day and night?  That’s a pathetic attempt at good news.  Suddenly there is poison in my heart. Bitter, angry poison. God, it’s not fair.  She never did anything wrong.  Why would you make her live with this disability for the rest of her life?  It’s too terrible.  To never see sunrises or sunsets.  She won’t see the ocean. Mountains. Wildflowers.  Waterfalls.  Lightning.  Color.

“There is no known cause for this condition.  It just…happens. And unfortunately, there’s no known cure or treatment either.  Here.”

He hands me a card for CVI – The Center for the Visually Impaired – and for Blind Services in Atlanta.  It didn’t register, I just stared at the card; it felt alien in my hand.  I’m thinking, “I won’t need this card, I don’t need this.”

As we leave the hospital, we start making phone calls.  To all the people who wanted us to let them know right away; they had been praying for us.  How do I even start these conversations?  There’s no good way to do it, no matter how you phrase it, it still punches all the breath out of you.

“Hi Dad, it’s me.  We’re driving home from the doctor now and … she’s blind.”  The words fall like an anchor, an anvil.  I make my way through the long list of phone calls, listening to people on the other end of the line grope for words.   It’s not their fault; there’s nothing to say.

No tears yet, just numbness.  I suppose we’ll just go home, eat supper, and keep living.

One week later
Dan is having a really hard time.  A friend of mine, who works with children with disabilities, says that dads often take it the hardest, because dads are fixers:  heroes and protectors of their baby girls.  I’m sure she must be right, because here is my Dan, a first-time dad smitten with tiny Madeline – and there’s not enough money, enough love, enough medicine in the world to fix it.

We are grieving a loss, and I’m learning that all of the stages of grief apply: denial, anger, bargaining, depression, and acceptance.  I don’t really know where I am; I am floating, but Dan is very, very angry.  We were playing around with a conversation book tonight – asking each other funny questions for the sake of lighthearted conversation that had nothing to do with disability income or MRIs.  One of the questions asked “If you had to wear a button on your shirt that summed up your outlook on life in five words or less, what would your button say?”  Dan’s response, without skipping a beat, was “God made my daughter blind.”

Dads definitely take it the hardest.

April 30, 2008
I feel like my life has started over from the beginning and I’m having to re-do all the difficult ‘firsts.’  The first time she cried in her crib AFTER we knew: I couldn’t bear to let her put herself back to sleep.  I rushed in, touched her, and whispered, “I’m here, I’m here. You can’t see me, but Mommy’s right here.”

The first time I left her with my mother-in-law so I could run errands: I gave Sandra a 30-minute crash course, left pages of instructions, and shed tears on the way to the store.  And the first Sunday we walked into church: Everyone knew, and they looked at us.  All the same look: heads cocked a little to the side, sad eyes, grim smiles.  The sanctuary was thick with pity and I tried to make eye contact with as few people as possible.   Only a few decided to say something to us.  Most of them, in hindsight, were well meaning and kind, but they just didn’t understand – and it was awful.

“At least it’s only her eyes.”  Excuse me?

“Well, you know, everything works together for good.”  Your daughter didn’t have to be blind for the good.

“I know how you feel, my nephew is legally blind and he had to have all these surgeries…”  Let me stop you right there.  Your nephew?   He had surgery options? You have no idea how we feel.

And so, I am indebted to a few tender people, full of compassion and wisdom that said helpful things during these first weeks.

My Aunt Jan said, tearfully, “Kate, I’m so sorry.”  And my mother, in response to my statement “I just want to hold her” said, “I just want to hold you.

(The “Prayer Jar” we received as a gift the week we got home from the hospital. A blessing.  How frightened and exhausted do I look?)

May 1, 2008
The next step is an MRI to make sure that the rest of her brain is developing normally.  Apparently a large percentage of babies who have optic nerve problems also have a bunch of related conditions.  Their hypothalamus and pituitary gland are affected.  They have to take hormone treatments for growth hormones, stress hormones, and thyroid regulation.  Sometimes adjacent parts of the brain are missing as well, causing learning disabilities and developmental problems.

Yesterday I spent the whole afternoon on the phone.  A call to the children’s hospital to schedule an MRI.  A call to Emory’s children’s center to schedule the endocrinologist.  A call to social security to apply for disability benefits.  It’s amazing how many questions a man named Douglas can ask about our income, assets, accounts, and medical history.  (In the end, we were denied.)  A call to Georgia Pines, an association that works with disabled children.  Another call to Babies Can’t Wait – a local resource for parents with disabled children. Physical therapy.  Occupational therapy.

I am now officially a project manager.  My PR major is coming in handy after all.  Yes, I was created to raise her.

To be continued…

(9 months later, first steps.)

If you want to fast-forward to the end of the story, here is the most recent post I’ve written about Madeline’s vision:  ”Letter to 22-Year-Old Me”

You can find the things I’ve written about vision loss by clicking the Vision Loss tag here.

The Survivor Series giveaway is still live!  Share a #survivorseries post for a chance to win $150+ in coffee, music, books, and other survival essentials.  Click here for details.

You guys, I wrote some books!  They’re really good and if you buy them and read them I will bake you cookies.*  You can get it on Amazon, from Barnes & Noble, and in bookstores August 1.  

 

*and eat them myself because you live too far away.

You Can Do Hard Things

My daughter was born blind.

When she was three-years-old, it was hard for her to learn self-help skills that come more naturally to sighted children.  Putting on socks.  Using a fork.  As a sighted person, it was hard for me to know how to teach her, and as a parent, it was hard to watch.  If independence was my goal for her (it was and is), I had to insist she learn.  I had to hold her toes to the fire a little bit.  But I also had to acknowledge that it was hard.

Growing up is hard anyway; we ask children to try new things every. darn. day.  ”How do you know you don’t like it if you don’t try?”  My brain would implode if I was asked to try half as many new things as the average four-year-old.  Do something that I haven’t mastered?  BUT I MIGHT FAIL.  That’s like asking me to play a team sport.  I break out in hives thinking about it.

Growing up is hard.  Learning to put on shoes is hard.  And it was hard for Madeline.

A phrase I used every day, was

“You can do hard things.”

She wasn’t allowed to say “can’t.”

She could say, “I need help.”
She could say, “This is hard.”
She could say, “I am frustrated,” or “I am tired,” or “I am sad.”
But she couldn’t say “can’t,” and she couldn’t quit.

(I hold myself to the same standard of language and toughness.  It’s always okay to say, “This is REALLY HARD.  I am tired.  I need help.”  But I try not to say can’t.  I try to do the next right thing.  Gotta go through it.  Inch by inch.)

I call my girl Madeline the Brave.  Madeline the Tough.  Madeline the Helpful.  Madeline the Hope-Giver.

For her entire life, I have been telling her, “You can.”

You can do hard things.  And here’s the thing – she has.

I believe in the power of not quitting.  I believe in the power of “You can do hard things.”  Thomas Edison said, “If we all did the things we were capable of, we would literally astound ourselves.”  I believe that.  I believe that there is a divine spark in each of us, and that that spark can ignite courage and perseverance and creativity and great compassion.

Here is what I hope for Madeline (and for you and me and everyone):

I hope that I am not the only one telling her that she can.  I hope that a whole host of people rally around her and remind her that she has a divine spark in her, and that just because a thing is hard, doesn’t mean it’s wrong.

I saw these two commercials this week, and both of them made me cry.  I’m thankful for the little insurgence of messages like this in advertising.  Alone, they don’t negate all of the terrible messages we get from the people that are trying to sell us things, but there is something inside of us that springs to life when it hears the truth.  Like there is a sleeping cat in our hearts, all drowsy and curled up – but when it hears TRUTH, it shoots its head up, the way cats do, like they are spring-loaded, and it locks eyes with that truth.  There’s a knowing, isn’t there?  My inner cat wakes up in church a lot of times – I’m sitting there listening when he shoots up, and I think, “This thing I’m hearing right now is THE REAL DEAL.”

So I hope that when people – men and women alike – see commercials like these, their inner truth cats sit up.  I hope that in the constant stream of promotion and consumerism and materialism and idolization of beauty, sex, pleasure, and comfort, these messages ring so true that they are downright startling.

ALL THAT TO SAY:

Girls can.
We can do hard things.
Wake up, little truth cats.

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The Survivor Series giveaway is still live!  Share a #survivorseries post for a chance to win $150+ in coffee, music, books, and other survival essentials.  Click here for details.

You guys, I wrote some books!  They’re really good and if you buy them and read them I will bake you cookies.*  You can get it on Amazon, from Barnes & Noble, and in bookstores August 1.  

 

*and eat them myself because you live too far away.

“Don’t be delicate.  Be vast and brilliant.” -Shinedown
Kate

Wherein I, the Flee-er, Fought

I am having a time-stands-still, remember-it-forever, validating parenting moment.

Just now, when given the option to write or braille her homework, Madeline chose braille.

That means that right this second, I get to acknowledge that I chose right for my child.  Too often parents don’t.  In fact, we almost never do.  We don’t know what would have happened had we chosen, taught, or encouraged differently.  We just know that we’re doing the best we can, and somehow, against all odds, kids mostly turn out okay.

I fought for braille.  And I’m not a born fighter.  When it comes to fight or flight, I’m a flee-er.

So many special needs moms are bulldogs.  They call, and fight, and advocate.  They march into offices and make fusses.  They say, “This is not acceptable.  You must do better for my child.  My child is a hero and an overcomer and he can do one hundred times more than you are presently imagining.  He deserves more and better from this system.”

As much as these moms are my friends and my sisters, I often feel less-than when I’m around them.  I find myself thinking, “I am not a bulldog.  I am not a fighter.  I don’t have what it takes.”

But I fought for braille.

I fought the system.
When they said, “Maybe she would do better in a special needs classroom,”  I said, “That is not even close to her least restrictive environment, so absolutely no.”

I fought the odds.
When they said, “We can’t give her that many hours/that summer instruction/that specialist,” I said, “That is unacceptable.  I will do it myself.”

I fought really well-meaning friends and family.
They said, “You know, she can SEE the page.  She doesn’t need braille.  Technology!  iPads!  Magnifiers!”  And I said, “Braille = literacy.  She can choose when she’s 18.  Until then, I choose.”

I took classes.
We brailled grocery lists, and Christmas cards.
In every school, at every meeting, at every pass I said, “More hours.  More braille.  Equal time, equal exposure.”
I blindfolded her when she practiced.
People wondered if I was forcing it.

People said, “She can read the words.”
And I said, “But she won’t be able to read them in 2nd grade.  And H-E-DOUBLE-HOCKEY-STICKS if I’m going to wait until she’s 3 years behind to start teaching her the alphabet.

I fought for braille.

And tonight, when given the choice between print and braille, Madeline chose braille.

She chose it because it is easier for her to form letters with her fingers than it is for her to form them with a pen.

She chose it because she could.  And she could because she learned.  And she learned because I fought.

This is what she wrote:

I cannot even.

And listen, I may have fought, but I only fought because of the amazing, passionate, dedicated educators that fought alongside of me for the good of my child.  Educators that pulled me aside and said, “I can’t say this as a teacher, but as a parent…”  And, “You didn’t hear this from me, but…”

If I fought, it’s because they equipped me to fight.  They gave me the buzzwords, the loopholes.  They gave me the courage; they EN-COURAGED, truly.  They texted and called and emailed.  They said, “Fight for Madeline.  Keep fighting.”

Our teachers and vision teachers and braillists and specialists are our heroes, and this success is theirs, too.

I cried tonight.  I cried because I got to see the  fight pay off.  It’s not theoretical anymore.  It’s tonight, right now.  My baby knows braille, and she likes it, and she chooses it, and I did a good thing.

As the great philosophers of The Fray said, “Sometimes the hardest thing and the right thing are the same.”

On Art and Hope and Washi Tape

I spent my afternoon listening to Leigh Nash’s Hymns and Sacred Songs, sipping espresso, and hanging up all of Madeline’s artwork from our beach week.  The rainy days yielded lots of drawing, plus Brooke was there, or as Madeline calls her, The Best Artist In The World.

I can’t argue.

I started to Instagram this picture, but there was too much I wanted to say about it.  Then I was all, “Wait, I HAVE A BLOG.”

Here are my 5 would-be Instagram captions:

1. When Madeline was 4 months old, I could not have imagined this glory.  Darling, do not fear what you don’t really know.  Vision loss, hearing loss, down syndrome, cerebral palsy, autism – whatever the diagnosis, whatever the life-changing, dream-changing, scary unknown, do not assume what your child will not be able to do.  Just wait and see.  If there are things they cannot do – that’s okay.  Who they are is enough.  But what they can do – WHAT THEY CAN DO – will surprise you every day.  Kids are brilliant, resilient, spectacular little people.  Dear special needs parent, do not fear what you don’t really know.  Madeline the hope-giver wants to be an artist and and astronaut.  Who ever would have thought.  There is so much hope.

2. I need a new phone, STAT.  Here’s a game: let’s pretend this is really bright and clear and happy and gorgeous!

3.  It is so important to display kids’ artwork in their home.  I remember the wall above my parents’ headboard, filled with pictures from my brother and I, and I remember how proud it made me feel.  There were some really beautiful ideas of how to display kids’ art at apartment therapy a few months ago.

4. I am rich.  When my heart fails within me, I only  have to look at this wall to remember.  I am rich.  Parenting matters SO MUCH.  If I only ever get two things right in life, I want those things to be loving Jesus, and raising Madeline, Sam, and Henry Conner.

5. I will sing its praises again – y’all, $2 for a roll of washi tape is worth it times a billion.  (I loved this ode to washi tape on the walk in love. blog.)

(This one isn’t on Madeline’s wall.  It’s going in my room:)

 

Letter to 22-Year-Old Me

It has been almost six years since a doctor told me that Madeline was blind.

I remember everything.  What I was wearing.  What he said, exactly.  The 6,704,870 thoughts I had on the drive home.  Some traumas turn into blurs; this one is emblazoned on my memory.

In my wildest hopes I would not have dared to image Madeline as she is today.

This is what I would tell six-years-ago-me, if I could.

Kate,

Everything is going to be okay.

Right now, in the future, Madeline is watching The Magic School Bus episode about outer space.  That’s right – she can watch TV.  She sits really close on her little red footstool, and she has two younger brothers, with perfect vision, who also sit close because that’s how their big sister taught them to do it.  (They also took their first steps with a white cane, which was adorable.)

Here is what I want you to know, young, scared Kate.

Madeline is going to have friends.  She is going to run - fast and hard and fearless.  She knows braille.  You know braille.  It is hard, and you’re going to cry and quit for a little while, but when Madeline is in kindergarten, you help her with her homework and you both read it pretty effortlessly and everything is okay.  (Incidentally, Madeline is going to surprise you all the time with the things she can see.  Even when she is six, she will still be surprising you – and every doctor and teacher she has.)

You’ve never cried in an IEP meeting, or after one.  Only before – because fear of a thing is almost always worse than reality.  Try not to worry.

Madeline is incredibly bright.  Her vocabulary is enormous – annoyingly so.  But she’s not just smart-bright; she’s a sparkle.  Everything in her whole life is over-the-top big.  She says things like:

“I know I have a lot of days left to live, but I know that no day could possibly be better than this day.”

“I will listen to you, I will listen to daddy, I will listen to anyone, even after I DIE I WILL LISTEN.”

“The only thing better than your painting is GOD.”

And “Pluto is the most important planet in my life.” 

She is some kind of special; people are drawn to her.

There are so many bright, happy things about your life, and I won’t spoil the surprises.  Here is the most important thing:

Darling, do not fear what you don’t really know.  Do not grieve for things you haven’t lost yet; you may not end up losing them at all.

Madeline’s middle name is Hope – you had no way of knowing how perfect a christening that was for her, but I am here to tell you she has lived up to it in every way.  She has been spreading hope, warm in the hearts everyone who has the privilege to watch her, for six years now.  For six years, just sparkling and hope-spreading: hope to families touched by ONH, hope to teachers, hope to doctors, hope to friends – hope to everyone.

Don’t worry.  Don’t be afraid.  It gets better.  You get better.  You are carried on rhythms of grace, on the backs of friends, and on prayers of the faithful the whole way – every step.  Every hard-fought step, every uncertain step, every hail-mary, God-save-us step, you are carried.

Life is brutal and it is beautiful; Glennon Melton calls it brutiful.  And, God, is it ever.

But you can do this.  You are doing it, and you are doing a good job.
Darling, do not fear what you don’t really know.
Breathe.
Hope.

love,
present Kate

P.S.  She does eventually learn to buckle her seat belt and put on her own socks, so don’t sell her; she pulls through.

 (All photos by Brooke Courtney Photography)

Braille, yo!

Hello, my name is Kate, and I am a braggy mom.

I had to – HAD TO – share this video of Madeline practicing her tracking and her sight words tonight.

Not from memory, not using her vision.
This is legit braille reading, y’all, and this momma is proud.

(Apparently proud makes me speak southern.)

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(Yes, Sam is systematically emptying the entire pantry in the background of this video.  I promise we feed him.)

 

Ophthalmologist

I’m 27 years old, I have a college education, I’ve been raising a daughter who sees a dozen vision specialists every year, and I JUST NOW learned how to spell the word “ophthalmologist.”  There is an extra “h” in there, and an “l.”  For the longest time I could remember one superfluous letter, but two was too much.  NO MORE!  I must be growing up.

This morning Madeline had her yearly check-up, and today was the first time I didn’t go with her.  There were lots of reasons, including Sam’s schedule, writing work, rush hour in ATL, and more.  It was the best of all our options, but there have been lots of Mom-tears over the last 48 hours.

I got up at 5:20.

I’m sorry, did that not resonate with you?

I GOT UP AT 5:20.  That is how much I love my child.

Madeline was in remarkably good spirits considering I normally have to lure her out of her bed with breakfast foods.  A trail of little zucchini muffins all the way from her bedside into the living room, like Hansel and Gretel.  Madeline does a lot of things well; waking up is not one of them.

I put her in her Light Up The Darkness shirt, because it brought me joy.  It brought Madeline joy too, until she got in the car and realized that her shirt did not actually light up the darkness.

Dan put me on speakerphone when the doctor came in, and I went crazy-mom.  I asked every question that Dan had already asked and gave him way too much information/opinion/commentary about the size, shape, color, distance, contrast, and velocity of every single object Madeline appeared to have noticed in the last 365 days.

I birthed her; such is my right.

This was the first check up where Madeline was verbal enough and cooperative enough to give us some solid information.  As in, “Yes I can see that letter.”  This was the first check up where they were able to check each eye individually.  It was the first check-up without me.  The first check-up that we did not have to man-handle her little head into that giant machine with the chin-rest.   Big day.

Madeline was chipper, enthusiastic, vocal, and cooperative.  She is the best.

Her greatest disappointment of the day was not the early rising, the drive, or even the eye drops; it was that her class was learning about spiders today, as this is “creepy crawly insect” week at school, and she had to miss it.  She requested that I go to the library and get “a really good book about spiders” while she was at her appointment.  I will oblige.  Because I love my child.

Here are some quick thoughts about vision loss today:

1. It’s okay with me if Madeline never sees any better than she can right now.  That’s called peace, and it’s amazing.

2. Madeline continues to blow everyone’s socks off with how well she uses her functional vision.  No vision teacher or doctor has ever interacted with her and not left astounded.

3. I wish that you could know how it feels for me to sing the words to Amazing Grace.  I wish that you could feel the anguish and joy of “was blind but now I see.”  Or to read Psalm 139: “The night will shine like the day for darkness is as light to You.”  Or 1 Peter 2:9: “…That you may declare the praises of Him who called you out of darkness into His wonderful light.” Or any one of the hundred other references in scripture to our lost-in-the-sin-sick-darkness and to God’s bright and morning star, light-of-the-worldness.

Everybody can experience God’s bright rescue – Dan and I don’t have any advantage in that department.  You certainly don’t need a child with vision loss to feel the deep, deep darkness in your soul or to see it in the world.

But - we do have the great privilege of seeing blindness, literally, every day.  We get to see how it affects everything.  We understand the fullness of joy we would experience if our daughter’s vision were completely restored – if she could see like we can see; we can access that emotion easily.  I was thinking about this just the other day, about how badly I want to be there when Madeline sees, fully, for the first time.  I want to watch her face.  That thought/emotion is never far beneath the surface.

Because of our understanding of literal blindness, we are able to translate that insight and emotion to spiritual blindness.  We can apply what we know (feelings of grief, loss, anger, injustice, hopelessness, desperation, dependence, need for healing) to our own spiritual condition.  Like copy/paste.  When God says that our eyes are blinded by sin and mortal-humanness, that we live in darkness – we are fortunate enough to understand the level of lostness and need that He’s getting at.  I get what what happen if Madeline wandered out of the yard; I have to push the thought out of my mind often because the fear is not healthy.  It would be dangerous for any child, but magnified for my darling.  She could not see roads, cars, ditches or ant hills.  Unlike most school-age children, she could not find her way home.

Oh, we understand fully, the depth and desperation of our need.

And therefore, we are able to understand the sweetness of The Light.  

This is why I cannot read a single verse or sing a single stanza about God opening the eyes of the blind, or delivering us from darkness to light, without crying.   I never have to pause and imagine what that would feel like – I already know.

The Light feels like – like joy so full it makes your ribs ache.  Like a thousand tongues to sing a thousand praises would never be enough.  Like body-rocking-sobs.  Like relief so big that your knees give out and you fall on your face because you can’t stand up under the goodness of it.

It feels like glory.

It feels like salvation- because that’s exactly what it is.  

“You are a people belonging to God, that you may declare the praises of Him who called you out of darkness and into his marvelous light…once you had not received mercy, but now you have received mercy.  Amazing Grace, how sweet the sound, that saved a wretch like me. I once was lost, but now I’m found; was blind, but now I see.”

Vision and Coffee

This is an impromptu vision post, because this is my blog and I do as I please.

It is 75 degrees here.  On December 3rd.  I am grumpy about it.  I blame Al Gore.

Two hours ago, I rolled the windows down on the way to pick Madeline up from school, because I added a much-needed air freshener to Dan’s car and it was so potent that my eyes were watering.

But – “‘Tis better to have watery eyes from an air freshener than to have watery eyes from rank man-car smell,” I always say.

Riding with the windows down was a new sensory experience for Sam, who shrieked with delight.  Madeline, of course,  joined in the shrieking.  4-year-old girls are good at that sort of thing.  They giggled and shrieked and held hands in the back seat, each so tickled by the other’s delight the whole way home.  It was such a “moment” that I couldn’t bring myself to end it.  Instead of pulling into the driveway, I decided to go get a cup of coffee at McDonald’s.

I chose McDonald’s because, as much as I was craving a Venti, half-caf, non-fat, caramel macchiato, I didn’t have $5.08 in cash – which meant that I would have to use my card, which meant that Dan would see the charge and ask me why I spent $5.08 on a cup of coffee.

I pulled into McDonald’s and, when I ordered a “Large, half-caf, non-fat French Vanilla Latte with half of the pumps,” there was a long silence on the other end.  (Starbucks 1, McDonald’s, 0)  Eventually we had true communication, shared meaning.  Although after my lengthy explanation of exactly how I wanted my high-maintenance coffee drink, I suspect she may have spit in my cup.

As we were sitting in the drive-thru waiting for my spit coffee, Madeline said something amazing.  She looked out the window and said,

“Mom, why are there stripes on the wall?”

Because she saw this:

Let me say that again.  SHE SAW THIS.

Low contrast, like colors, from her seat inside the car at least 10 feet away.

GO. MADELINE.

It totally made up for getting home, sitting down to write this, and finding this in my coffee cup.

 Does this look like a half-caf, non-fat, French Vanilla Latte with half the pumps to you, McDonald’s?!?!   No.  It does not.  (Starbucks 2, McDonald’s, 0)

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Don’t miss out on the new Christmas music in today’s first post.  (Here)  The guys have generously given a free download to kateelizabethconner.com readers!  

Teaching the Test

Though it is frowned upon in the educational community, I am teaching the test.

The test is ”survive in a house in which the parents are outnumbered by the tiny humans,” and I am teaching my family.

Madeline, through no choice of her own, has enrolled herself in a 4-month winter intensive called “Self-sufficient Big-sisterdom 201.”  Also known as “Put On Your Big Girl Panties (Literally),” “Do It Yo’self,” and “C’est la Vie, Honey; It Builds Character.”

She passed Big-Sisterdom 101 with flying colors, so we’re optimistic.

I have a working list of life skills that each family member will need to master to make everyone’s life (read: my life) easier come March.  Dan’s list mostly involves how to put a trash bag back in the garbage can after taking out a full one.  Also some light cooking (see: thawing soups).  He is selfless and patient and very competent; just a few weeks of instruction and he’ll catch on in a snap.

Madeline’s list is a little more challenging.  Some of the things I’m teaching are age-appropriate, next- step kinds of things, but most are visual skills.  (This is such a weird statement, because to me, everything is a visual skill.  What wouldn’t be easier with vision?)  This means we’ll have to be extra patient/diligent/creative in teaching them to Madeline.  I’ve shared a lot of her story here, so for the interested, the curious, and those who adore her, here is what we’re working on with our 4 1/2 year-old daughter who doesn’t see quite like everyone else.

Get off of playground equipment by herself.
I want to be able to let the kids run around while I sit with the baby on a bench, rocking, nursing, whatever.  Madeline is excellent at avoiding obstacles and fearless when it comes to climbing, but getting down is a totally different story.  Field loss (tunnel vision) and a total lack of depth perception make it really hard.  Mustering the courage to go down a slide is 100% out of the question for her [the slide-related nightmare she relayed to me between sobs a few months ago was enough to give me a scare], so this means getting down the playground stairs safely. In the words of Rafiki, “IT IS TIME.”   She’ll be able to actually play instead of just amusing herself in the mulch, and she’ll be able to navigate without fear.  She’ll be less likely to get left behind by other kids, AND it means we’ll go to the playground much more often – getting us out of the house I won’t be cleaning.  Everybody wins.

Fasten her own pants.
Fine motor skills are hard.  Anything requiring hand strength or finger dexterity is hard.  Add that to the fact that she can’t see the buttons/snaps on her pants while she’s wearing them and it means ALL OF US in crammed into a public bathroom stall so that Madeline doesn’t just give up and come out naked (there is precedent for my child leaving a public bathroom naked).  No thank you.  We’re practicing on pants that are off, spending inordinate amounts of time in the bathroom (where I often have to meditate and count to 10 while Madeline “tries again” so as not to completely loose it and do it myself), and steering clear of leggings and elastic waists until she gets the hang of it.  Toys like Play-doh and lacing beads help build hand strength and dexterity, but they also mean that I get Play-doh smooshed in the carpet and Sam ingests a lot of little beads.  Prayers for grace and patience are appreciated.

Buckle her own seat belt.
OH MY GOSH.  I posted this status on Facebook the other day:

122 of 122 moms agree, when the kids reach this glorious, glorious milestone, you get at least 10 hours of your week back.  It eliminates the lifting, the digging under little bottoms for straps, the clicking, the angry-toddler-back-arching, and the climbing into the backseat of a minivan with your duff hanging out the door trying to find the buckle that’s wedged down in the seats, bloodying your hand in the process.  I’ll be buckling Sam and our newest arrival for a lot of years still, but every day I can keep my postpartum butt from hanging out the side of a minivan is a good day.  It’s a tough skill (again, because of hand strength and dexterity), but also because some buckles are so finicky that they won’t buckle unless they are lined up just right.  Hard to do if you can’t see.  More Play-doh, more beads, more practice, more time, more prayers.

Pick up.
Despite her hoarding tendencies, Madeline actually appreciates a clean space.  I should rephrase this teaching point – she knows how to pick up; she needs to learn how to find the things she needs to pick up.  We have no problem with things like stuffed animals and dress up clothes (and she’s a pro at shelving books), but THE LEGOS.  THE BLOCKS. THE KITCHEN FOODS. THE 7 BILLION THOMAS THE TRAIN CHARACTERS.  We have more Thomas the Train pieces in our house than there are people on the planet, of this I am confident.  I am also confident that if you asked her to, Madeline would name every single one, right down to the obscure Alfie and Ivo Hugh.

Because a big part of Madeline’s vision impairment is field loss (no peripheral, very limited central – imagine looking through a drinking straw), seeing the “big picture” is hard work.  She has to scan back and forth and put together the whole picture in her head.  If toys have been dumped out (the toys are ALWAYS dumped out) she can’t find them without narration from one of us.  ”It’s behind your left foot.  Almost, now drag your hand in – it’s closer to you.”  ”It’s over by the red couch.  Other side.”

This one is hard because I’m not really teaching a skill (she knows how to scan) I’m teaching diligence.  This will ALWAYS be harder for Madeline than it is for other children; it will always take her longer.  It will always feel like I’m expecting too much, or that it is unfair.  But that’s another thing that all parents have to teach their children; sometimes life’s not fair.  Similarly, we had to teach her that sometimes she has to sit still on her carpet spot at school, even though she can’t see the board, and listen to the story even though she can’t see the pictures.

I can teach Madeline a lot of tips and tricks to help her clean, I can encourage her and reward her, but I can’t regrow nerves.  If it were possible to wish and hope and pray and beg and cry them into existence, she’d have them by now.  The best optic nerves ever.  So for now, we’re working on habits:

-Pick it up immediately, before getting out another toy (less confusing and less clutter this way).
-Don’t inspect a thing before putting it away.  You don’t need to know what the block looks like, you just need to put it in the box.
-Pick up handfuls, not individual pieces.
-Use your hands and knees and feet; sometimes crawling is easier than standing.
-Do the whole job.  Don’t quit.

And of course, there is much gratitude and praise from us.

Those are the big ones.  The rest are just self-help and life skills that all 4-year-olds are learning.  Basic chores like clearing the table, basic manners like LISTENING and OBEYING.

I’m telling you what though, I’ve never seen a little girl who so delights in her little brother.  She literally screams her praise of him, “MOM, SAM IS STANDING UP ALL BY HIMSEEEEEEELLLLLLFFFF!”  Nevermind that he’s been doing it for months – her sisterly heart is swelling with pride.  She’s nicknamed this new brother “Pencil” (no explanation, believe me, I’ve tried) and shouts praise at him through my belly button like it’s a megaphone.  This girl is – the best.

 

Moms of 2, 3, 4 and more, what are some of the most helpful things your “bigs” did to help you out with the “littles?”  What do you wish you’d taught them before the new ones came?

Teachers, what tips, songs, tricks, motivations do you use to teach these skills to sweet little hands?

 

 

When Motherhood Hurts

Yesterday morning I was sitting on a long sheet of white paper, waiting for my OBGYN to come in and let me hear my tiny baby’s heartbeat for the very first time, when I got a text message from my friend:

“I’m either having a miscarriage or an ectopic pregnancy.  I’m sorry, I just couldn’t call.  Please pray for us this morning.”

Before I could respond, my doctor came in.

So I sat, listening to the strong, healthy heartbeat of the baby we didn’t plan – the baby we were trying not to have – while one of my best friends sat, hundreds of miles away, bleeding.

I scheduled an ultrasound to determine the sex of our third child; she went into surgery to have the ectopic pregnancy removed.

In that moment everything about motherhood seemed arbitrary and upside down and unfair.

Perhaps the most unfair thing of all is that my friend is not the exception.  Neither are my 6 friends that have miscarried in the last couple of years.  Neither are my 2 friends who are battling infertility.  Neither are my 3 friends who are waiting for adoptions to go through.  Neither is my friend who had an unplanned pregnancy, and just as she was getting through the fear and into the love, lost the baby.  Neither are my dozens of friends who have heard the words, “It’s anencephaly.”  ”It’s cerebral palsy.”  ”It’s autism.”

Neither am I – even I who have easy pregnancies, easy deliveries, and healthy babies.

Two unplanned pregnancies: two rounds of fear, and “I’m not ready,” and “My life will never be the same.”  And one very hard day when a doctor told me, “There is no treatment; she will never see like you and I can see.”

Thinking about it all, I went back and re-read a chapter of Shauna Niequist’s Bittersweet, called “Eight for Eight.”  It is all I’ve been able to think about for the last twenty four hours.

Motherhood is the most beautiful, transformative, sacred thing I’ve ever done.  I would choose it again every single time, forever.  But some days – it sure does hurt.

“…And then I realize that as much as I want my friend Jenny’s abs, she wants a baby, and we’re all yearning for something.

When I take a step back, I’m surprised to realize that the topic of pregnancy and birth and mothering, for every single one of us, has been touched with pain or just a shade of heartache.  The odds of that surprise me.  Eight women, and eight stories of waiting or yearning, of brokenness mixed in with deep delight.  If we’re a microcosm, is this how it is?  We’re eight normal women, if normal exists in this or any realm.  And one by one, eight for eight, one or another aspect of motherhood has pricked us and made us bleed.

…As for my dear friends and me, our hearts are full, of course, but also a little tender, bruised, tired.  Motherhood, and the journey towards it, has battered us a little bit, each in our own ways.  From ambivalence to longing to loss, from the anger that our bodies won’t do what we want them to, to the consuming, crushing love for a baby that is just hanging on…Motherhood laughed at our plans, twisted up our expectations, and gave them back to us upside down, covered with blood and stretch marks and Goldfish cracker paste.

We are very thankful, and we adore our children and one another’s children.  But as much as it’s beautiful, the process is a little harrowing.  Who knew we could want something so badly and then not be able to just wrestle it into existence?  Who knew we could want to provide something so desperately for our children, to heal and protect them, but find ourselves profoundly unable?  The stakes have gone up in our lives, the way they do, it seems, every time you decide to love something.”

[Shauna Niequist, Bittersweet, 2010]

And oh, how we love them.