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.”
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.
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)
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!
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.
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?
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.”
A pivotal moment in our decision to move to Georgia was our visit to a school for the blind there. (You can read about our emotional visit to the vision school in Alabama here, and why we feel strongly about vision school here.)
I realize that I’ve left Madeline’s story (here and here) hanging for a while and am committing to write installments more regularly – to be a good steward of the story we’re living. It is unusual, emotional, hope-filled, and remarkable. It begs to be told.
Here is today’s bit.
When Madeline was nearly 1, I tried to transition her to a sippy cup. “Tried” being the operative word.
I bought a pack of flowery little girl cups – a pink one and a green one – and Madeline drank water and apple juice out of them immediately. I marveled at her acceptance of the cups and immediately got all superior about my parenting skills.
Talk about counting your chickens before they hatch. Pride cometh before a fall, KATE.
That evening I tried to give Madeline her milk in the pink sippy cup. “Tried” being the operative word.
I placed the cup in Madeline’s hands; she lifted it to her mouth. You’d have thought I’d given her beet juice – no – rotten, boiling beet juice.
She reflexively threw the cup down and then her disproportionally large Disney-princess-eyes welled with tears. She had the same betrayed expression she gets when I take her to get shots at the doctor’s office – “Why would you let them do this to me?” She let out a helpless little moan as if to say, “But I trusted you…why would you give me my milk in a cup?”
Then, as Madeline tends to do, she made up her mind. No milk from a sippy cup. Ever.
As a parenting novice, I was idiotic enough to try to beg/plead/bargain/reason with someone too young to have control of her own bowels. After wasting an hour of my life that I’ll never get back, I switched to Plan B: trick her.
I retrieved the identical green cup from the cabinet and filled it with apple juice. I held her and allowed her to sip out of it for a minute while she CHILLED THE HECK OUT. Then I switched the cups.
My (delusional) rationale was that she needed only to sip it long enough to remember that she loved milk, and once she realized that the sippy cup was the bearer of milk, all would be forgiven.
As soon as I picked up the pink cup she started to whine. Oh, for the love.
I placed Madeline in her high chair and set both cups in front of her. She reached for the green one.
“Gosh, can she smell it?” I wondered. I put the cups behind my back, mixed them up and placed them back on the tray, like an amateur magician hiding a foam ball under one of three cups.
Madeline reached for the green cup again.
I repeated this exercise three or four times, always with the same result. Madeline started to giggle at our game, and I started to cry. I called Debbie immediately, with Madeline still giggling in the background, and said,
“I think Madeline can see color.”
In true Debbie fashion, she said, “Great. Now here’s what you have to do…”
Like everything else in vision-loss world, there is no test – no fancy cup experiment that will tell me if my child can see color. The solution is, maddeningly, the same as every other solution so far: talk. I had to name the color of everything, all day, every day.
“We are putting on your yellow dress.”
“Here is your red drum.”
“We are opening our white refrigerator.”
“I am picking up your purple blanket.”
“That is Mommy’s book. It is black.”
It wasn’t difficult to remember, because I was already narrating the most inconsequential of actions for her, but it was exhausting. I never. stopped. talking. I get tired just thinking about it.
Nothing about learning to see is fast. There is no such thing as instant gratification. You teach every single concept, every single day, and three or four or five years later you get to see what sticks.
A few months later Madeline started naming colors. It was an emotional roller coaster. I spent my days oscillating between euphorically hopeful and completely defeated.
She would name a color correctly and I would soar.
She would name a color incorrectly and I praised her anyway – while I cried.
Any parent of a child with special needs will tell you: that is the absolute hands-down-worst thing. Telling your child “Good job” through tears because she is trying so hard. When my little girl is so eager to please, so happy to tell me what she sees – but she’s wrong. Because she can’t.
Some days I mustered the strength to correct her in hopes that maybe, maybe she’d keep learning. But most days I just whispered, “I love you so much,” and cried.
It’s an unfair burden to place on a child: ”Mommy is happy when you see and sad when you don’t.” Madeline is not responsible for my happiness, and what’s more, I delight in her whether or not she can see; in that way vision is completely irrelevant. So, I praised her for every effort, only losing control of a handful of tears; the rest I saved for nap time, when I could grieve privately.
Madeline called everything purple for 2 weeks because the word felt so good on her tongue. She giggled when she said it: “Pp-pull.” It was adorable with a small side of mourning.
Then, increasingly, she started getting them right – too right for them to be lucky guesses. After a long (in every sense of the word) six months, it was clear: Madeline could see color.
When she was one year old, Madeline taught me to never, ever, ever, ever give up.
Our road is marked with little victories, scattered with alters which I could turn and follow back to the very beginning – remembering every place we stopped by the side of the road to give God glory for His goodness to us.
“This far the Lord has brought us.”
(The next installment will be the story of why we’ve made the controversial decision not to seek stem cell treatment for Madeline’s condition at this time. Stay tuned!)
Sam is four months old. Right now, he is exactly the age Madeline was when we found out about her vision. We got our diagnosis of Optic Nerve Hypoplasia from Emory on April 16th, exactly 4 months after her birth on December 16th.
I can’t figure out why this feels so significant, but it does.
She was born around Christmas, and Sam is this semi-significant age around Christmas. He is four months; she turns four years. It’s all loosely connected in a way that makes it difficult to pinpoint what it all means. I just know that I can’t stop thinking about it, and I can’t stop feeling about it. It’s hovering silently beneath the surface this month.
After a lot of feeling and only a little bit of thinking, this is what I’ve concluded:
It means life goes on.
It means God can redeem anything, everything.
It means I am thankful for two healthy pregnancies and two healthy children.
It means time flies.
It means life is different than I imagined it would be; I know braille. This is possibly less surprising than the fact that I live in Alabama.
It means that I am very specifically thankful for Sam’s vision. Every day I whisper, “He can see.” I’m sure other parents would be every bit as thankful if it occurred to them to be. But it occurs to me. A lot.
It means that there is a soft spot in my heart for babies that are four months old.
It means that in His rock-steady faithfulness, His goodness, and His all-sufficient love, God has carried us through a difficult four years – and we are alive and together and sane only because of His mercy toward us.
It means that I have given Sam four months worth of kisses, which I estimate to be somewhere in the hundred thousands.
It means that I am a feeling, emotional person who is also a mother, and I love my kids to the moon and back, a million times.
And that’s it. That’s all I got.
Happy fourth birthday, darling Madeline. And happy four months, sweet Sammer. You guys are the best.
Yes, she is wedged in a corner behind boxes of Christmas decorations. We told her it was like a fort. Roll with it, okay?
I know it seems trendy and bandwagon-ish to rave about the coming of fall – boots and scarves and pumpkin spice lattes – so I won’t. To be honest I don’t really care for fall colors; I find them drab.
Colors aside, all the trappings of fall are nice enough, but they have little to do with why I love the season. For me it is almost singularly a matter of degrees. Summer haze makes me drowsy and lazy (and hot). Fall crisp makes me feel alive.
I can take my first (literal) deep breath in months without choking on the humidity. It is invigorating.
I want to move the most basic of daily activities outdoors. Eating, reading, sleeping.
So last week, we did.
Here’s a little gallery of our first fall days. I hope there are many more to come.