Hand over hand

She holds the hair comb awkwardly
Foreign to her fingers
Though they've met a hundred times

Furrows her brow into the mirror
And winces back the tears
As she drags it
Through a stubborn knot

She wants to get this
Wants to do it herself
But her hands do not remember
The way I've taught her
Once, twice, twenty times

Tears well up
Forgetful, unruly hands
Will not comply
Comb clatters to the floor
And she sighs

Most days, to be honest
I want her to move quickly
Want her to be ready
We're running late
Wishing she could do this by now
And I sigh
And find patience

Pick up the comb
Put it into her fingers
"Like this, remember?"
Put her other hand on top of her head
To hold the hair down
"Here, so it hurts less when you pull,
Right?"

She nods
Concentrates
Furrows her brow into the mirror again
Wanting to move her hand
Her tongue moves
She shakes her head a little
Shakes it off

My hand guides hers
Hand over hand
"Pull down gently, like this"
"And back up again"
"Start here"
"And back down"

Up and down
Painstakingly slow
Hand over hand
And I wonder if she'll ever remember

I used to wonder if she would ever
Get herself dressed
Learn to read
Be able to make sounds
That resembled the English language

It was painstakingly slow
Hand over hand
Consonant by consonant
Weeks, months, years
Until friends began to say
Hey, we can understand her now

That determination on her face
Brows hunched
Tongue groping
Up and down
Hand over hand
Day after day
She is used to fighting
Used to trying again
Maybe one day
She will get it

Seven in Bed

Matt was working late again tonight. After dinner, when the house was put back in order, Toby asked a question about a nuclear bomb so we had to watch a quick YouTube video to learn about those. Then we had to finish the last half of "Annie", which we had started the night before. After we all wiped our happy tears at the end, I shooed the kids up the stairs and into their beds.

This is not as easy as it might seem because some nights it seems a lot less like herding cattle and a little more like herding cockroaches. They keep scattering to every corner of the house. I find myself saying things like, "Lay down! Now stay there this time!" But there's always someone who forgot to brush their teeth, and someone who forgot to fill their water bottle, and someone who needs to go potty, and someone who has to sing 8 verses of a song she just made up to her pet gerbil in order to properly tell the gerbil good-night.

So after a few rounds of plunking chubby kiddos into beds and a few rounds of, "You! You! and You! What does lay down mean to you? Lay down! And stay there!" we finally came to a really beautiful part of our day. Three glowing stuffed animals projected star patterns on a dark ceiling while a noise machine softly whispered with ocean waves. Everyone sighed and snuggled in and listened quietly while Hannah prayed. We remembered what we were thankful for and we remembered the people in our lives who especially needed God's help. Tonight it was Naomi's turn to pick a song for me to sing. She picked "Be Thou My Vision," which I hadn't sung in awhile, and which seemed infused with more meaning tonight.

After one more kiss and hug for each kiddo, just as I was on the verge of freedom from children, Naomi asked, "Can you come snuggle with me?" And while the practical side of me really just wanted to run for the hills, the sentimental side gave in. Why not?

I climbed into Naomi's bottom bunk with her. It was a tight squeeze for me and my big girl, but it got tighter very quickly. Hannah jumped down from the top bunk, giggling, and squeezed in on top of me. Toby was suddenly worming his way in between me and the wall, Elijah was on top of him, and Emma cuddled up by my feet. "Now you're buried under kids!" Toby yelled.

We lay there as one big giggling mess for a few minutes, shaking the bed, which probably wanted to collapse under the weight, when Hannah said, "Tell us a story about when I was a baby." After a few chubby-Hannah stories, Emma wanted some baby-Emma stories, and Naomi wanted to hear some stories about my life growing up. Just the time I thought I would collapse under the weight of kids, something soft brushed my feet. The cat had snuck up the stairs and joined us too!

When the kids realized that Liana was in bed with us they all burst out laughing so hard that the cat shot out of the room and down the stairs! Just as the giggles were dying down from that Elijah announced, "Mommy, I'm poopy." I groaned, and told the kids that the party was over.

"Party pooper," Naomi giggled. And the laughter broke out again.

That's how Matt found us when he came home from work at 10:00pm: one stinky room full of giggling kids. I told him it was a long story. It's also one I want to remember.

Living With It

Sometimes I come to write when I have something I'm bursting to share with others: an announcement, a funny story, a snippet of our life; but lately I've come more often just to sort my emotions. Sometimes after a long day at work Matt will sit down at the piano to play his emotions, and sometimes after a long day in my life I will sit down at my computer to write mine.

Today was another day in the familiar tug-of-war between joy and ache--the tension between our very real happiness and our very real heartbreak that has become the atmosphere of the breath we breathe: in with joy and out with heartache all in the same breath because our life is undeniably both now.

We had a hilarious lunch conversation today about how one of the kids' good friends wants to grow up to work with sharks, but is terrified of grapes. The girls went on and on and we laughed together in genuine joy. We are happy here. God has cared for us. Our needs are met and our home is loving. We live in joy.

At dinner tonight, out of the blue, Hannah announced, "When I grow up I want to live in a yellow house and have three kids and coach a soccer team!" And all at once my heart shattered, because I knew what was coming next. I knew, and there was nothing I could do to stop it.

"And when I grow up," Emma followed, but then she paused. She stood silently, remembering the horrible uncertainty of her future. Neither of us could find the right words. 

Her eyes looked to me for direction, so I pulled together the pieces of my heart that I could find, and I smiled at her. "It's OK, Emma," I reassured her. "What would you like? It's OK to dream."

The she grinned in her naive, Emma way and said, "I want to live in a blue house and be a soccer coach." I smiled at her, and my heart just dissolved.

Emma will likely never live independently. She will likely have very little eyesight left by adulthood and may already be blind. She will likely be in kidney failure or will already have had a transplant. She may need a liver transplant. She may have developed thyroid failure, diabetes, or other endocrine problems. And her social skills will never be up to par with societal norms. Emma will probably live with us, or maybe in a group home, but I haven't had the heart to tell her that yet.

Toby and Elijah were suddenly engaged in a shouting match to declare what color houses they wanted to live in and what color soccer team they would coach, but my eyes were now on Naomi who ate silently. Naomi is not naive. She knows. And she doesn't engage in "when I grow up" conversations. What would she say? No one knows what will happen when Naomi grows up, and she knows that.

Sensing the tension inside of her I asked her, "What do you think, Naomi?" She silently shrugged and continued eating.

Hannah piped up for her, "Naomi says she'd like to be an artist or a writer."

Seizing on that, I encouraged Naomi, "I think you would make a very good writer some day, Naomi." That much is possible, and that gave her a smile.

Just then Elijah yelled over-top of Toby, "I want to grow up to be a BROWN house!"

And then Naomi giggled. And then I giggled. And then we all laughed together about Elijah growing up be a brown house. And it was OK again. At least for awhile.

Some days I'm not sure how to live with the tension. How do I let three of my children be fully excited about growing up? How do I encourage them to dream big and plan for the future right in front of two children whose future is so uncertain?

How do I help Naomi and Emma process all the emotions that come up in their young, innocent hearts at times like this? Should I encourage them to talk about their feelings more? I don't want to put words in their mouth or fear in their hearts if it isn't there. I don't want to suggest, "Does that make you feel sad?" if they really are doing OK. I'm just not sure how they're doing with all of this. They are both so mature and so strong, but I also want to give them permission to feel sad or weak. They are so quiet that I feel like I would have draw it out of them with leading questions, but I am afraid that the leading questions themselves would create fears or sadness that might not be there.

Some days this is really hard. I want to let them forget it all. I want them to be happy, normal kids as much as is possible, but then we get blindsided by TV shows about stars, or by random, clueless strangers asking them what they want to be when they grow up, and I know I need to prepare them for that. I'm still groping to find the right balance between helping them deal with their disabilities and helping them be as normal as they can be.

Some days I still can't handle my own emotions well. I belong to several groups on Facebook: two for the diagnosis that Naomi and Emma previously had (ARPKD/CHF, because after 5 years with that diagnosis those people are still family to me and we can still help each other out), two for their new diagnosis of Bardet-Biedl Syndrome, and one that is a group of moms from the college I went to. Every day I listen to and talk with moms in the first four groups who are fighting for their children's lives: fighting against doctors who want them to terminate pregnancies, fighting doctors who don't want to treat their babies after they are born, fighting to understand diseases they had never heard of, fighting with insurance companies to get therapies and assistive devices covered. Every day these moms are asking some of life's toughest questions, crying together, falling apart and getting back up.

In that same newsfeed every day the moms in the group from the college I went to are asking about how they can be sure they're getting the best baby carrier for their money, or find just the perfect preschool, or the perfect babysitter, or teach their child to read when they are three. And I want to strangle them all through the screen. I know that's not the right attitude. I know they're not doing anything wrong. These are normal questions, normal concerns for normal moms and healthy kids. But sometimes I wish I could give them some perspective.

"Hey you mamas out there, your kids are most likely going to be OK. They're going to grow up and be mostly healthy and probably live independently and get married and have their own healthy kids. And they're going to do all of that no matter which baby carrier you choose, or which preschool, or how early they read. So just… chill out, and be thankful."

But I haven't posted that yet, because it would lead to a lot of awkward silence. They wouldn't have a clue that I just had that heartbreaking dinner conversation where two of my kids remembered that they'd rather not grow up. The mamas on the internet wouldn't understand. So I keep those emotions in me, where they do less damage.

Sometimes I feel like I've connected with other people who really do understand and have a good perspective on the challenges we face. Yesterday I came across an article about a 13 year-old boy with retinal degeneration who just had a beautifully bright attitude about life, and I found it inspiring, until I came to the part where the mother explained that she came to terms with her son's diagnosis of retinal degeneration when she realized that it wouldn't kill him.

Even reading articles about people that are supposed to understand, I suddenly get stabbed with an emotional knife. Yes, for this boy, retinal degeneration was all he had. It wouldn't kill him. But that cannot be my solace. My girls have a far more complicated syndrome, and even among other people with BBS they are in more danger than most because of the poor condition of their kidneys and livers. Most people with BBS don't have the severe kidney and liver involvement my girls do. For my girls BBS will likely take their life early.

I know it. They know it, to some extent. And together we're learning to live with it, one day filled with joy and with heartbreak at a time. Some days it is harder than others.

Out of Sight

I keep waiting to be used to the idea that my girls are losing their vision. I keep waiting for it to become our new normal. I'm waiting for it to not hurt.

And for weeks it doesn't hurt, because I don't think about it much. In the every day scramble and the every day joys it doesn't ache because it isn't there. But stars make me sad now, because I know they make Naomi sad now. Every time someone talks about stars, every time a picture of the stars pops up on the computer, or in a Highlights magazine, Naomi and I are both reminded of what she's lost already and what she will keep losing and it aches again. I wish it didn't, but it does.

Today Naomi had her electroretinogram that told us exactly what we already knew to be true: that Naomi's night vision is significantly reduced now, a first step in the degeneration of her retinas that will continue until she's lost all vision, apart from a miracle of God or modern medicine. And when the doctor who didn't know Naomi but had performed the test, met with me in a little bare consultation room to break this news to me gently, I smiled and assured her that it was OK, that we already knew this to be the case. And it didn't hurt too much, not too much. Until the doctor, who I guess hadn't read Naomi's chart, tried to assure me that the findings were non-specific and that maybe it wouldn't progress to blindness. When I had to inform the doctor that Naomi was genetically diagnosed with Bardet-Biedl Syndrome and that we knew for certain that it would progress, and when the doctor looked at me sadly, and I had to put on my happy face and tell her that at least we had the tools now to help Naomi, so that we could both walk out of the room without crying, that's when it hurt again.

When I found Naomi waking up in the recovery room watching a Doc McStuffins episode where the little Doc and her stuffed animals spend the night in the backyard watching a meteor shower, that's when it hurt again. Of all the things on TV, why does this show have to be on right now? When Doc McStuffins realized that one stuffed animal had trouble seeing the stars, but cheerfully proclaimed that it could be fixed with glasses and all the little fuzzy animals cheered I suddenly wanted to strangle those animals. That was not the happy ending Naomi or I needed to see, because it is not Naomi's happy ending. No glasses will fix this. And it hurt again.

When we were finally released, I let my 115 pound little girl climb into one of the children's hospital's red wagons and I drove her out of there as quickly as we could. And I think we both sighed with relief to leave those walls behind again for a few weeks, and to drive home in the warm daylight where Naomi's eyesight is just as good as anyone else's…at least for now. We were relieved to drive home to the every day scramble and the every day joys, to find the house the mess we knew it would be, and kiss the little faces that were happy we were home, and to put it out of mind again, at least for awhile.