Dr. You Can't Handle the Truth

I spent ten and a half years wishing I knew what was wrong with my children: ten and a half years dealing with chronic disease that had no genetic explanation, being blindsided by new symptoms that doctors occasionally accused me of making up or blowing out of proportion, spending frequent late nights researching and reading internet articles either in the attempt to pinpoint the genetic condition or at least find ways to alleviate some symptoms. We flew to conferences, even flew to the National Institutes of Health for a week and had our girls checked by the best of the best. Their conclusion? "Eh, we're not sure what's up with your kids, but you know, their diagnosis is close enough."

Okay, that wasn't a direct quote from them, but it was the gist of it. They only problem is that their current diagnosis wasn't close enough, leaving far too many symptoms unexplained and not properly treated. They promised more testing, and I signed the consent forms, but they never came through with it. Funding was cut when the national budget was slashed, or so I heard. They stopped answering e-mails. And I was on my own again.

I spent ten and a half years wishing I knew what was wrong with my children, but now that I know, now that I've had 6 months to let it soak in, I've realized something: maybe I wasn't ready for that news ten and a half years ago.

I was a tender twenty-two years old when Matt and I went to that first ultrasound, from a family that had no hint of genetic illness or birth defects of any kind, from a school system that kept the different kids safely locked away, from a society that kept the unique people out of sight and out of mind, because we all felt better that way. Just the mention at the next appointment that something might possibly, possibly be wrong with my baby's kidneys threw me into a world of emotions that I had no idea how to process. Babies can have kidney disease? What happens to them? Can they treat it? Do they die? What will her life be like? What will my life be like now?

Do you know what never, ever entered my mind at that point? I never even considered that kidney disease might not be the only problem my daughter would face. And do you know what I've realized now? That was enough for me to process at that time. God knew that. And he is merciful.

At her birth we learned she had clubbed feet. Clubbed feet and kidney disease were enough for me to handle after delivering a new baby. Within the next year we learned she had a unique and challenging personality and general developmental delays. That was more than enough to deal with then.

Naomi's kidney doctor kept us purposefully in the dark. We resented it at the time. He never used the words polycystic kidneys, even though I caught him writing it as a diagnosis in his chart once, instead using more general words like chronic kidney disease around us. He would never give out more information, but would instead say, "She's fine for now. Take her home. Enjoy her. Have a good Christmas together." Matt and I would joke that his motto was, "You want the truth? You can't handle the truth!" We still call him Dr. You Can't Handle the Truth.

And as angering, and I still believe wrong, as it was for him to do this to us, maybe, … maybe we couldn't have handled it then. Maybe at twenty-three years old, as a new mom, I didn't need to know that I would one day have two girls with chronic kidney and liver disease, general developmental delays, autistic-like traits, severe speech problems, heart murmurs, endocrine abnormalities, metabolic differences requiring special diets, a life-long propensity towards morbid obesity, and retinal degeneration leading to blindness.

It's difficult to know whether I'm angry or thankful that it took ten years for my girls to get a correct diagnosis (and only then because I took matters into my own hands), or whether I am thankful that I didn't get handed the diagnosis of Bardet-Biedl Syndrome as a twenty-two year old mom at a first ultrasound so many years ago. I would have been petrified. The news was hard enough to absorb in stages.

At the Bardet-Biedl Syndrome conference this June they discussed how the average family waits ten years for a proper diagnosis and how unacceptable this is--how better eduction of physicians and better testing need to improve this. But as I think about it, I am undecided.

Would it have been better to have immediate answers for strange symptoms and immediate access to specialists and testing? Would the worry and frustration that a correct diagnosis relieved outweigh the enormous burden of knowing sooner about the many facets of this syndrome that were completely out of our control? Would I have worried over hairs that I couldn't add to my head and inches that I could not add to my height? Would I have over-protected my kids and not pushed them to keep up with their peers? Would I have been brave enough to teach them how to ride bikes, calm enough to sign them up for soccer, and stern enough to discipline their easily-excusable behaviors?

I used to be livid when doctors suggested that we had enough information on our daughters to care for them at that time. I still think it was wrong for them to be laissez-fare about my girls' care. It is their job to gather as much information as possible because they do not know what information they may find that would make a real difference. Had we known sooner, I think both girls would have been enrolled in more rigorous therapies from an earlier age. I could have gotten a jump-start on monitoring their diets and their weights more closely. And I certainly could have saved thousands of hours of computer research. But in the end, maybe we were all better off for not knowing.

We didn't know enough not to treat them normally, and while that sometimes put unrealistic expectations on them, it also made them into two tough, determined little girls. They are relatively healthy, they are active, they are happy, and when we finally got the BBS diagnosis it wasn't quite the polar-plunge shock it would have been ten years ago.

Sometimes I wonder about the burden placed on young, new parents by routine ultrasound and readily-available genetic testing. Sometimes I wonder if it's better not to know everything all at once. To this day, I'm not sure if I would rebuke Dr. You Can't Handle the Truth, or thank him. Maybe some of both, because in the end, after the diagnosis has been made and the dust has settled, you know what I've come to? We're going to take them home, enjoy them, and have a good Christmas together.

Maybe Christ was right that my heavenly Father knows what I need. Maybe there was wisdom in his teaching recorded in Matthew 6:34, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

December Night

I shoo them towards beds
Longing for a time when the patter of feet
The shouts and yelps
And last trips down the stairs
Quiet at last

Give them each a hug and kiss
While they whisper excitedly to each other
About the early presents
That a kind soul gifted them today
One wants to tell me what she named the puppies
(Very original I'm so impressed)
Another that she lost the shoes for Snow White Barbie
(We'll find them in the morning, I'm sure)
And another that she's planning to sew a stuffed zebra
(That's really creative, dear. Have fun tomorrow)
And then I have to kiss them again
Because they were so busy talking
They don't remember the first one

Slightly impatiently
I kiss more quickly this time
(Pay attention, I'm not coming again)
And scold the littlest
Who can't seem to remember
That he belongs under blankets

Turning off the light
Is the relief of locking up the office
(Or maybe the animal shelter)
And stepping into the fresh air

But they ask for the ladybug
That makes the star pattern shine on their ceiling
And while I sing an ancient hymn
They find constellations in the stars
Even the one who will never see stars again
Not in this life

And we sigh together
And we sing together
Caught in the solemn space
Between gratitude
And melancholy

Closing the door
The little one begs for Silent Night
The song we've sung 358 times since last Christmas
The girls groan
But I oblige
Feeling now that I wouldn't mind lingering
Under the constellations
In the calm and the bright

And when I finally creak down the stairs
To the muted sparkling colors
And the six flickering candles
One in each front window
To cheer this dim little neighborhood
When I finally breathe
I wish that I had given them
One more round of hugs
And maybe one more verse
Of Silent Night

Liana Comes Home

After I wrote my last blog and posted it on Facebook, I was surprised by the number of people urging me in messages, e-mails, or phone calls to adopt the cat that Emma had fallen in love with at the humane society. I considered it, then dismissed it…then considered it again.

I asked for advice, looked at the cost, considered the obstacles, and finally decided to bring it up with Matt.

"No," he responded flatly, "the last thing we need is more responsibility right now."

And in a way he was right, so I dropped it for the night. But in a way I felt he was wrong, and so I brought it up again the next night.

"What if we kept the cat in the basement?" I suggested. "I could clean it up and fix a nice place for the cat. Then it wouldn't ruin our furniture or shed all over our things, and the allergens would be confined to one place if Hannah should have a reaction to it. Plus, … it might catch the squirrels down there."

We have been plauged with an infestation of pine squirrels ever since we moved into this house four years ago. They come into the house through the basement via holes they chew around the old window frames. Then they climb into the walls and even the attic. We have trapped and either killed or relocated eight squirrels and yet, with both pine and walnut trees surrounding the house, more squirrels are always lined up to fill the vacancy.

I think it was the suggestion that having a cat in the basement might finally, finally solve our squirrel problem that peaked Matt's interest most. He said he'd think about it.

After a few quiet moments I concluded my case with, "When was the last time Emma asked for something?"

We both said nothing for a long while because neither of us could remember anything Emma had really wanted before.

Hannah wants things with her whole entire heart at least once a week. Hannah begs loudly, weeps bitterly, rejoices with every fiber of her being, and often has "the worst day ever" and "the best day ever" on the same day. But Emma is the wallflower of the family. She quietly blends into the background of every day life in our house. Sometimes she tries to pipe up only to be out-shouted by four siblings, and I see her face drop and her sentence trail off into thin air because she knows it's no use to keep speaking.

Ever since Emma could toddle she has followed Hannah: going where Hannah goes, saying the phrases Hannah says, playing what Hannah coerces her to play, preferring what Hannah convinces her to prefer. She has tried to assert her independence before, but Hannah is usually very quick to keep her colonialized sister believing that she is happier under the benevolent leadership of such a wise sister as herself.

So when Emma, of her own accord, latched her whole little heart on this cat and dared to whisper, "I wish we could keep her." I just decided that maybe we had better move heaven and earth to make it happen. And after a few days' thought Matt agreed.

------

I looked through the humane society's website searching for that special cat and realized that the one Emma loved was not Lila after all. Lila was the name of the cage-mate to Emma's cat, who was named Liana. She was 2 1/2 years old and had been brought in as a stray the previous December. She had been in that cage in that noisy, smelly room for ten months. It was time to make a home for her.

I spent two days deep-cleaning our basement: throwing away things I realized I'd never use again, taking piles of boxes to Goodwill, sweeping and sweeping again nooks and crannies that hadn't seen a broom in forty years. The kids just thought I'd decided it was time to clean.

That Saturday morning, four days after Emma and Liana had met we told the kids that Mommy and Daddy were taking Emma out on a date and we dropped the rest of the crew at Grandma's. When Matt and I were alone with Emma in the van we told her that we thought she might like to show Daddy the cat she had seen. We didn't tell her that we were considering adopting the cat until we could see how they would interact. The staff put Liana in a meet-and-greet room with us where Liana was obviously spooked at first, and understandably so. But patient Emma sat so quietly and talked so sweetly that Liana finally made her way over and began to play with the toys Emma offered. We knew then that things would be OK.

"Emma," I asked, "Do you know why we came to see Liana today?"

Emma had been listening as we talked with the staff about the potential adoption and her eyes brightened. Grinning sheepishly she ventured, "Because we might adopt her?"

"Would you like to adopt Liana?" Matt asked.

Emma smiled brightly and nodded. And so we applied to adopt Liana, but we would have to wait a few days to pick her up.

When we got back to Grandma's house we let Emma gather the other kids and make the announcement. "We went to the humane society," she said, "and we're going to adopt Liana!"

The other kids looked confused. They knew that wasn't right. Silly Emma, they thought. But looking to me, I nodded my head in confirmation.

"What?!" Hannah said. "You're letting us have a cat?! What?!! Really?? This is the best day of my life!"

The next few days were filled with hair-raising anticipation. We went on a kid-led shopping spree for cat supplies and spent hours arranging everything just-so in the basement. We hoped to bring Liana home on Monday but there had been a pile of adoption applications turned in just before ours and we ended up having to wait until Wednesday before everything was in place. The girls had a dreadful time waiting, but we filled the evening by wrapping yarn and sewing carpet scraps around poles in the basement so Liana would have a nice place to sharpen her claws. We even building a cat tower together. "I like working together," Hannah said. "She's going to be so happy here."

--------

Matt happened to be off work the day we finally adopted Liana. All the kids were spilling over with excitement when we picked her up,

and when we introduced her to her new home.

Liana was nervous, but made her way methodically around the basement, smelling all the smells, locating her food and water, and meeting the people. She eventually hid under a shelf and we let her stay there while the girls took turns quietly reading a book in the basement and waiting for her to come out. After several hours she ventured out and began to relax around us. Then the fun began.

She spent most of the rest of the day playing with the kids and following us around like a puppy, even coming when we called. No one wanted to leave her in the basement and go to their beds that night, but we told them they would have plenty of time to play again tomorrow.

After Matt tucked the kids in, I heard a sound in the basement like a box falling underneath me. Liana had not left the ground the entire day--no jumping on chairs, counters, or anything--so I was surprised to hear some activity.

I went down to investigate and called Liana's name, but there was no response. She had been coming running to us before so this was really odd. I stopped the dryer so I could listen and called her again. I heard two very faint meows and then nothing again. I looked and looked and looked like I have never looked through that basement before. That cat was nowhere. I even opened the two doors to the canning cellars which were used as storage rooms and were locked and peeked inside them, but couldn't see her in any of our boxes. She was nowhere! She wasn't answering me any more either. I went upstairs and told Matt. He came down very worried right away because this was so unlike her. Just then the furnace kicked on and we both got really scared.

Our furnace is a huge, cast-iron cauldron from the 40's. Tucked in a corner behind the furnace and the water heater was a heat vent. I got a light and laid on the ground and found a cat-sized opening in the bottom of the vent that I hadn't known was there: one end led into the furnace and one end into the chimney. Matt ran and shut the furnace off. We opened the door and looked inside with our hearts pounding. She wasn't in there--thank heavens. We ran outside and looked at the chimney. No cat out there.

We went back to the basement confounded, but somewhat relieved and called her again and again. As I was crawling on the floor looking under boxes again I thought I heard purring. The canning cellar door was purring at me! I opened it up and Liana jumped out and attacked me with love and cuddles. We just about cried with relief. It took us a good five minutes to figure out that Liana had jumped up on a workbench, then up on a window sill, then onto the ledge under the rafters and walked on that ledge behind a shelf, over the wall to the canning cellar room and had jumped onto the pile of boxes in the other room, which was the noise I heard, where she was trapped. Why I didn't see her the first time I opened the door, I have no idea, she must have been behind boxes.

We wired mesh over the opening in the heating vent right away, glad that we had found that. While we were doing that Liana disappeared again! This time she had found that we had left the door at the top of the stairs open and she was exploring our living room.

We took her to the basement where she refused to leave our sides and we realized she had been looking for a way to get up to her people upstairs when she fell into the canning cellar room. She wanted to be with us. I asked Matt if he wanted to sleep in the basement. He went and got Naomi and Hannah (Emma was already asleep), who were more than thrilled to do that job. They bedded down with sleeping bags, giggling hysterically as Liana pounced on their toes under the covers. Liana stretched out beside them contentedly when we shut the lights off.

From what I heard neither Liana nor the girls got much sleep that night. Liana was too excited to finally be in a home with people and toys and adventures to be had, and the girls were too excited to finally have cat to play with. Everyone was so tired the next day that Liana had to learn to sleep in the basement herself after that.

------

Liana has been in our family for six weeks now and we have never regretted adopting her. The girls visit her first thing when they wake up. They find her sitting happily in her window, watching the squirrels play outside--where they belong. She hasn't caught a squirrel yet, but her mere presence has been enough to deter them. At first we heard them in the walls less often and now it has been weeks since they've ventured inside.

All the kids have enjoyed hours of playing with the cat and the girls have all had hours of snuggling her. She loves to jump in their laps and lay there purring while they stroke her and sing to her or read her books.

And while Liana is certainly not exclusively Emma's cat, Emma has had a few special moments  of bonding with her that have been priceless to witness.

I don't think Emma could have picked a better cat, and I think we have many happy years of cuddling ahead.

A Day in the Eby House: A Purple Closet, a Warm Trailer, and a Calico Cat

8:00am

I'm vaguely aware of Matt crawling out of bed, and I remember that I didn't pack his lunch last night. Toby slips into the room, sits on the foot of the bed and asks, "Is my new Planes water bottle clean yet?"

I remember that I forgot to run the dishwasher last night and promise Toby that I'll run it this morning.

Elijah is in the room now, wondering when I'm going to make his oatmeal, and also pondering the deeper questions of life. "Why is this called a closet?" he asks. Without waiting for my response, he adds, "Santa Claus can live in here. And it's purple." So that settles that.

I roll out of bed and clunk down the stairs sleepily. "Mommy?" Elijah asks.

"What, sweetie?"

"Oh…I'm too busy," he shrugs. Right. Why did I bother him, anyway?

Picking up his lightsaber and a doctor's kit bag full of tools he stole from my kitchen tool draw, he yells, "I'm riding my nermaltodder! Morsey! Don't! Or I'll bite you!"

I leave Elijah to fight his disobedient nermaltodder while I pack Matt's lunch and make breakfast in the kitchen.

10:00am

We are fed, dressed, combed, and ready for another day. The girls are settled into their school work, and the boys are pretending in their room upstairs. I slip up the stairs with a basket of folded laundry in time to overhear Elijah announce in a gruff voice, "I'm a big tough man! I can build a big bridge with water!"They boys eagerly set to work, and I head back downstairs because sometimes in the raising of boys, ignorance is bliss. Whatever they're doing, we'll pick it up later.

Emma greets me with a proud, sweet smile, "Mommy! I already did my Bible Reading and my math!" I  praise her, and then check on the progress of her more easily distracted sisters. Hannah is cuddled under blankets beside her favorite heating vent, trying to hide the stuffed puppies she was playing with while pretending to work math problems. Naomi has gotten lost in her new geography book, which she finds too interesting to put down in order to complete any other school subjects.

The doorbell rings. It is a tenant who is behind on lot rent. He's come with a partial payment, explaining that his construction job only gave him 20 hours last week, and asking if he can get me the rest in two weeks. I ask how his wife is doing, because I know she is recovering from surgery that they also don't have the money to pay for, and we work out a payment plan.

12:00pm

I realize the two loaves of bread I made yesterday have already been mostly devoured. We have three slices of bread for lunch. I dig through the fridge and find enough leftovers to feed everyone and set them out on the table.

"Mommy, there's a lady at the front door," Hannah tells me.

I find a new tenant there, who doesn't know yet that most tenants use our back door, where the doorbell is located. She is wearing two coats and a hat. She asks if I can help her figure out why her heat isn't working in her new trailer. This is not part of my job description, as she owns the trailer and only rents the lot, but I smile and say, "Sure." Hannah knows what to do. She gets the walkie-talkies and gives one to me as I put my coat on, keeping the other for herself. She holds Elijah back as he screams when I leave.

I find that the thermostat in the new tenant's trailer needs new batteries, slide the battery compartment out, replace the batteries, and the heat comes on. She shouts a loud praise to the heavens, gives me a hug, and thanks me profusely. I smile as I jog back up the hill to my house.

Inside, Naomi and Hannah have dished up the leftovers and the kids are sitting down to lunch. I ask if they've remembered to pray. Toby asks Elijah, "Jonathan, do you even know how to pray? I know you're a big, strong construction worker, so I don't know if you know how to pray."

I wonder briefly where Toby got the idea that construction workers don't pray.

1:00pm

I drag Elijah to bed, protesting all the way that he doesn't need a nap. I tuck him under three blankets to weigh him down and rub his cotton cloth diaper beside his face slowly. He yawns. It gets him every time. He pouts a little more so I pretend that I'm going to leave. "I want a song!" He calls, "Sing me Holy Night." He means Silent Night, and no, he's not early for the Christmas season. This has been his favorite song since last Christmas. We sing it almost every day at nap time. I sit on the foot of his toddler bed, smile, and lean down to rub my nose on his. He giggles. I sing slowly, quietly, and run my hand along his forehead. He closes his eyes and yawns again. He knows when I am leaving, but he is too sleepy to protest.

I put bread mix in the two bread makers again so we are sure to have an easy dinner tonight, and I start the dishwasher so Toby will stop pestering me about when his new water bottle will be clean. Several exciting rounds of laundry follow.

2:00pm

"How do you spell 'water'?" Emma asks. She is writing the eighth page of a story about a horse and a fish in her journal.

"What do you think?" I ask. "It's spelled pretty much how it sounds."

"W-h-a-t-t-e-r?" she guesses.

Analyzing her guess, I conclude that water is not spelled the way it should be.

Hannah asks if she can write a research report on Collies. I tell her that that is a fabulous idea and point her to our 1972 edition World Book Encyclopedia set, because I figure Collies can't have changed that much in 40 years, and because every kid should have to look up facts in a World Book when they're in 3rd grade.

Toby finishes copying the whole alphabet in upper and lower cases. This is a serious accomplishment for the child who was in tears at the idea of holding a pencil and moving it while it contacted paper just two months ago. I reward him with a clean Planes water bottle, which he refuses to let go of for hours.

4:00pm

Homeschool is complete, dinner is in the bread makers, Elijah is up from his nap, and I have an unusual amount of energy and ambition for this time of day. When Toby asks me if we can go somewhere this afternoon, and Hannah dreamily wishes we could visit all the puppies and kitties at the Humane Society, I am amazed at my own reaction. Why not? Let's go.

After Hannah nearly faints, but covers her mouth so as to not annoy me with her incessant excitement. We pack up the diaper bag and head out. A stern speech reminds them that we are not getting any dogs or cats any time in the near future because we live in a house that we do not own, and dogs and cats are not allowed in this house (which is very fortunate for me), but that we can enjoy the animals and brighten their days a little by interacting with them.

Toby doesn't know whether to cover his nose or his ears when we enter the room with 40 barking dogs in cement cages. He is ready to leave 0.5 seconds later. I can't hear a thing Hannah is saying as her mouth moves, which is almost a relief, but it's clear that she's in love with the tiny pomeranian snuggled up beside the front of the cage, soaking in her strokes. Elijah is preoccupied with the cement door propper, which apparently doubles as a stool and a rocking chair.

Naomi and Emma have found their way to the cat rooms. Naomi enjoys looking at the pictures and names of the cats on the wall and matching that info up with the cats in the cages. She plays with a white kitten who likes to bat at her finger.

All the children find an animal that they like most of all, but Emma breaks my heart with her complete loyalty to an old, quiet, calico cat name Lila. Emma spends the entire hour we are there sitting beside Lila's cage. Emma and the cat quietly look into each other's eyes. The twenty other cats in that room meow and reach their paw through their cages like prisoners rattling the jail bars. But Lila silently lifts her head and gazes into Emma's eyes. Emma gazes back with compassion, with understanding, and after a few minutes the old calico cat reaches her paw out toward Emma through the bars. Emma holds her hand out flat and Lila's paw rests on it gently. And there they sit for an hour.

I watch the kids from the hallway as the make their way in and out of the five different rooms full of animals. The other kids greet all the cats, watch the bunny nibble hay, and pick out favorite dogs. But Emma does not budge. I kneel down beside her and ask, "Is that your favorite cat?"

Emma nods her head silently, and quietly admits, "I wish we could keep her."

In that moment I wish with everything in me that I could take that cat home. At any moment of the day Hannah is completely in love with a random anything, and I have no problem rolling my eyes at her, but Emma is different. Emma rarely sets her heart on something, she almost never asks for anything. I think of all the stories I have heard about therapy animals that special needs children bond with, and how those animals sometimes have a way of helping these quiet, special souls find their way in the world. And I wonder to myself what a cat like Lila might do for Emma. I can't find it in me to tell Emma that we have to go home, so she sits beside Lila and whispers quietly to her until the staff come and turn off the lights. My heart hurts for Emma as we leave.

I dole out generous globs of hand sanitizer, and we head to the van in the brisk evening October air, our ears still ringing with the barking of 40 lonely dogs. My ears ring all the way home with the chatter of four excited children, who can't stop talking about their favorite animals and all the funny things they were doing. In the rearview mirror, I watch Emma silently stare out the window the whole way home.

7:00pm

We have a late dinner of warm buttered bread, and warm sandwiches. We clean up a day's mess, including every mega-block, wooden block, waffle-block, and soft block that went into the giant bridge construction in the kids room.

8:00pm

Daddy's home! Hugs, kisses, spinning in the air, and a dog-pile ensue. Toby wants to wear his favorite camouflage shirt to bed tonight. Elijah wants to wear his fireman rubber boots to bed. Sounds like suitable sleepwear to me.

9:00pm

The kids are tucked in bed. I tell Matt about Emma and Lila at the Humane Society, and that I almost wanted to bring that cat home. Matt has had a stressful day and reminds me that there's no way we would want a pet on top of five kids. He reminds me that they have a gerbil. I want to tell him that Naomi talks to the gerbil, not Emma, but I let it drop.

We sneak ice cream cones from the back of the fridge and watch a movie together, hoping the kids don't come down the stairs to use the bathroom and catch us eating gluten and dairy. We have been known to hide ice cream under a blanket in such situations.

11:00pm

I lay in the darkness and the silence, and wonder why Elijah thought Santa would live in a purple closet. I wonder if the new tenant is warm in her trailer tonight. And I wonder what our lives would be like with a calico cat name Lila.

Ebenezer's Morning

A cloud was hung over my daughters
From before our eyes could meet
Placed by pictures and tests that defied explanation
Called fear of the unknown and grief for what will be

Sometimes receding, sometimes overtaking us
With each failed milestone, foreboding test,
Or shaking head of a medical giant
Biding us brace ourselves against the darkness

When yet again we met in a room
A doctor sighing with sorry eyes
Placing one more crushing boulder
Onto their surreal pile of diagnoses

We felt again that chocking cloud
Overshadow their every smile
Ominous above their achievements
Looming fear of the unknown and grief for what will be

In my grief I let myself be led
To wander down the path of what will be
Along the way I stopped to mourn each fear
The pain they face, the joys they'll miss, rejections they will meet

I mourned the life they would not live
When they lost the sight I could not save
Mourned the magnificent battle ahead
And wept at last over two small graves

And weeping there I realized
I longed above all to see their smiles
To wrap my arms around them safe
And tell them I had cherished the joys
And had not mourned their lives away

Then waking from grief's spell to hear their giggles
I nearly wept for joy, like Ebenezer's morning
There was time yet left for them to live
And time for me to heed the portent's warning

Then ominous grey cloud slunk back to grey horizon
Looming fear of the unknown, aching grief for all that's sad
Now overpowered by a greater fear
The grief of wishing I'd savored the life they had

I lay and smiled in morning's welcome light
And slowly filled my lungs with summer's warming air
And listened to the joy I'd almost missed
The sounds of girls pretending drifting up the stairs

I rose to set aside the endless sandbags
Meant to hold the ocean with my leaking dam
Dusted off our bathing suits, smiled down at them,
Then laughed together, jumped in, and swam

To Hold the Time

On Skyview's hill
Under battered pines
By golden corn
Brushing autumn's skies

I hold my son
Who would like to know
Why there are blinking lights
In the dusky blue
Why the ash tree is gone now
Why he can't touch the moon

We are happy to sit here
He and I
Where I once rocked him
To close the night
On Skyview's hill
Under battered pines

He is only delighted
To hear that the corn
Will soon be gone
That today's cool breeze
Will turn to snow
That Christmas will come
That he will grow

His ocean blue eyes
Twinkle as we talk
And I ache

Ache to hold this evening
And his pudgy toddler hand
And to never forget
His shining grin
When he lifted his eyes
To the dusky blue
And asked why he couldn't
Sit on the moon

"You'd need a spaceship"
I replied
"Where are they?"
He asked
And I could only smile
Into those ocean blue eyes
And together we ached
He for the moon
And me for today

We are happy to sit here
He and I
On Skyview's hill
Under battered pines
By golden corn
Brushing autumn's skies
Happy
And aching
To hold the time

Sister School

I watched out my kitchen window today as Hannah scampered up the branches of our magnolia tree. She shimmied out to the end of a branch that hung five feet off the ground, then shimmied back and gestured for Emma to do the same. Emma nervously, clumsily, made her way up to the branch. She stood on it shaking, clinging to another branch. She peered down at the ground as if it swirled below her, and then she looked back to Hannah, who was taunting her now.

"Come on, Emma!" Hannah goaded. "It's easy. You saw how easy I did it. Just climb out!

Emma narrowed her eyes and slid one foot along the branch below her, never loosening her grip on the branch above. She made that one step, then changed her mind and slowly climbed down from the tree. I didn't hear what Hannah was taunting because I was on my way out the door, livid.

I found Emma sitting on the back step, with her head in her hands, hiding the tears. Hannah's mouth was still dribbling with something about Emma not being a daredevil, when I yanked her inside and slammed the door.

"What is wrong with you, Hannah?!"I laid into her. "You know Emma doesn't have the same balance as you! She doesn't have the same coordination. She doesn't have the same eyesight. You know that, and instead of encouraging her, you are making her feel ashamed that she isn't like you."

Hannah's eyes welled up with tears. "I forgot," she whispered, "I just wanted someone to play with me."

I turned away from Hannah then, back to the window, and there I stood silently watching as Emma made her way back into the tree. She had steel determination on her face this time. I wanted to save her, wanted to tell her she didn't have to be like Hannah, but then she slowly slid her way several feet farther on the branch...and smiled.

I realized then, something my subconscious had known for awhile, that so much of Emma's abilities are due to Hannah's constant prodding and coaching. Hannah has, in effect, been Emma's physical and occupational therapist. She has not always been the kindest or the most gracious in her efforts to coax Emma along, but Hannah's need for a playmate and Emma's desire to keep up with her sister has created a remarkably effective program of intensive therapy for Emma.

Every day Hannah pushes Emma's abilities and nearly every day Emma's eyes fill up with tears. Had it been up to me I would have consoled Emma long ago and set her on the couch where she was safe and comfortable. I know I would have. I don't want to see her struggle. Yet the most amazing thing happens in Emma nearly every day: she doesn't choose the couch. She climbs back up on the tree and tries again.

Hannah has been coaching Emma on increasing her endurance--pushing her to run faster and farther during recess, timing her and cheering her on, and chastising her when she gives up. And do you know what has happened this summer? Emma's endurance has increased--remarkably so.

Hannah has set up obstacle courses and made up games where they time each other running over and around obstacles. I want to yell that that's totally unfair for Emma: she doesn't have the same eyesight! But do you know what has happened? Emma's agility has improved--remarkably so.

This fall, I wanted to tell Emma's soccer coach about her genetic syndrome, so he would understand why she was clumsier and slower than the other kids, but I held off. And I have been put to shame. Do you know what has happened this soccer season? This:

And this:

And this:

To my amazement, Emma is one of the better players on her team. There is no genetic explanation for that. The best explanation I can come up with is this:

And maybe some of this:

(Never mind that you're terrified right now, Emma, you're going to like this.)

And this:

(See? You're having fun!)

Today I turned back from the kitchen window to a heartbroken Hannah and told her, "Emma's up in the tree again. Go tell her what a good job she's doing. She needs to hear you tell her that she's doing a good job."

"OK, " Hannah smiled, "I will."

You should have seen the smile on Emma's face when she did.