Misty and Holly to the Rescue

It was a sad 48 hours of gerbil-lessness at our house. Liana was restless and out of sorts. She paced around the house looking for something. She was skittish at times and at other times she just laid on the table where the gerbil cage had sat and looked sad.

Sunday night I went to Wal-Mart and made a collage of pictures of Lilly. We hung it on the wall over the empty table and cried together.

I felt like the pictures of Lilly brought some closure and that we had had enough of the tears and long faces. We all missed the gerbil antics and silliness. Our house was empty without it. Today it was time to find a new gerbil friend.

I told the kids that if they finished their school work and cleaned up the house we could go gerbil shopping today. An amazing thing happened then: smiles and laughter returned. By 3:00 we were ready to go.

We were hoping to find a pair of female gerbils that were litter mates because gerbils are social creatures and are healthier when kept in pairs as long as they aren't strangers. To our great delight the pet store had just put out a new litter of gerbils for sale that morning. Four females shared a cage and we had our pick. The kids picked one light brown gerbil who was the most curious and active and one black gerbil who was more shy. They named the brown one Misty and the black one Holly.

They were all giggles and excitement as Misty and Holly ventured into their new cage and explored their surroundings.

Liana, who was being held in the basement, pawed impatiently at the basement door. When we finally let her up it didn't take her long to discover that the gerbil cage was full of excitement and friendship once again. She was delighted.

All is well once more in the Eby household. The gerbil cage is busy and adorable. The cat is entertained and fulfilled. The girls are smiling and laughing. Here's to many more years with Misty and Holly.

A Farewell to Lilly Gerbil

I woke up around 5:00am with a sudden, sickening thought; with my subconscious piecing together the clues that my waking mind had missed during this busy week: something was wrong with our gerbil, Lilly. I lay in bed, half asleep, remembering that Lilly hadn't been chewing cardboard tubes at all in the last week. She hadn't been trying to nip at the Liana, our cat, who sat for hours beside her cage. She hadn't run on her wheel lately. In fact, I couldn't remember seeing her do much but sleep in the last few days.

It had been exceedingly busy in the Eby household lately. My mind was on anything but the gerbil: the trailer park responsibilities, the new therapy schedule, the trip to Indianapolis for a medical procedure. In hindsight we all saw the signs that Lilly was slipping but paid no attention to them in the busyness of life.

When I woke up a few hours later I asked Hannah when she last fed Lilly. She said she'd fed her yesterday, and that appeased my worry while I made oatmeal for the kids. When the breakfast rush had settled I remembered Lilly again and went to check on her. I rustled her cage bars and she stirred inside her bedding burrow. I told Hannah that Lilly might feel better if we cleaned her cage. I opened the top and jiggled the bedding off of the top of Lilly, expecting her to run, but she barely moved. She was shaky on her feet and refused to open her eyes. She stumbled a few steps, panted, fell, and curled back up in her nest.

"Oh, Hannah," I said sadly as reality registered in my mind, "Lilly's not doing well at all. She's very sick, Honey, and I think she might not live much longer."

Hannah, in disbelief tried to think of anything to help Lilly, "But what if we cleaned her cage? Can we take her to the vet? What's wrong with her?"

Hannah quickly went to tell the other kids and as we stood over Lilly's cage, we all realized that things hadn't been right for a few days now.

"She hasn't been coming for treats very well anymore," Naomi remembered, "and I had to really coax her a lot to come this morning. She didn't seem right, but I didn't want to wake you up, and then I guess I forgot."

"I just thought she was becoming nocturnal," Hannah added, "I knew she was sleeping most of the day, but I thought she was up at night. I didn't realize she was sleeping all the time. I didn't know she was sick."

Our neighbor, who has had lots of small pets, came over to see Lilly and to tell the girls about how she had lost pets before too. I called our cat's veterinary office to ask some phone advice, but the vet seemed to think that Lilly was pretty old for a gerbil at one and a half years and that there was probably little that could be done to help her.

I tried putting Lilly's water bottle to her mouth, but she wouldn't drink. We put a few small pieces of strawberry and apple in front of her and she ate a little. I wondered if that would perk her up at all, but it was not to be. Lilly sat in her nest breathing shallowly and rapidly most of the day. We tried to go about our day, but kept coming back to check on her. When Matt came home about 2pm we told him that Lilly was likely dying and he came to say his good-byes and to comfort the girls. Around 4pm Lilly lay down and was clearly in her last hours. We gathered around her cage once more and then the tears flowed.

I told the kids they needed to each tell her good-bye. They told her that they loved her. They told her she was a good gerbil and that they would miss her. Naomi had two special songs that she used to sing to Lilly every day, multiple times a day. One of them is entitled "A Gerbi's Life is Fun, Fun, Fun," and the other is, "Lillyfuss is a Good Gerbil." When Naomi leaned close to Lilly and sang those songs with tears running down her face, even I lost it. Matt played the piano for Lilly because she had always enjoyed his piano playing. She used to jump up on her perch and watch him or run on her wheel when he played, so he played one more time the theme to Dances with Wolves and we all watched her struggle to breathe and we cried. We watched the video of the early-Christmas morning of December 23rd 2013 when we had first given Lilly to the kids. We remembered how cute and healthy she had been and how happy they had been.

Not knowing how long it would go on, I started dinner and distracted the kids with computer games. They periodically got up and checked on her and came with tear-streaked faces into the kitchen to report on how she was doing. I finally suggested that the girls work on making a coffin for Lilly from a small card-board box and filling it with things Lilly would like. They prepared a box with bedding, a blanket, and a toilet paper tube. Around 7pm I checked on Lilly again. She was only taking a breath every few seconds, and then there were no more breaths.

We gathered around her cage one more time. Liana hopped up on her towel where she had sat or laid many hours beside Lilly's cage. She looked at Lilly's lifeless body with concern and looked at all of us crying with bewilderment. I put on some gloves and lifted Lilly's body out for the kids and the cat to see one last time. We each said our last good-byes. Naomi sang one last time, "Lillyfuss was a Good Gerbil," and it really broke my heart. We closed up the cardboard box and buried it with snow in the window well below the window that Lilly's cage had sat by, because the ground was frozen. The final burial will have to wait for spring.

We were all in shock as I finished a very late dinner. The girls cleaned out Lilly's cage, washed it thoroughly, and put it in the basement. When all the necessary tasks were past, I think it really began to sink in.

"You know," Naomi said, choking on tears and wiping her red, puffy eyes with her sleeve, "I was just in the bathroom and saw the pile of toilet paper tubes there and thought, 'Lilly's really going to have fun with those,' but then…I remembered. It all just happened so fast. I haven't gotten used to it yet."

More group hugs and group tears followed. A few minutes later Naomi came back again. Her lip quivered and her voice shook,"I tried to go see Liana for some comfort, but after I pet her for a few minutes it seemed like she was saying, 'Can't a cat get any rest around here?' I think what I'm really going to miss the most about Lilly is that whenever I was feeling upset I could always go talk to her and she was always really interested to listen. She always made me feel better. And…I'm really going to miss that. Sometimes she almost felt like a person to me."

It was true. Lilly was happy to run to the front of the cage and listen intently when Naomi talked to her or sang to her. Lilly was very curious and social. She had a way of being interested in you that made you feel like she really cared, even though she occasionally nipped people for getting too close. She used to jump up on her perch and watch all the activities of the house, even the kids' bed-time TV shows. Lilly's favorite show as the A-Team. She never missed an episode. She loved to tease Liana and Liana loved the company. She had enough personality to seem like a little person.

We had even celebrated her first birthday last October (because we figured she must be at least a year old by then) with a little apple and carrot cake and a trip to the pet store for some presents.

She had been a real part of our family for 14 months, and her passing has left a huge hole in our home. I asked the girls whether they would even think about getting a new gerbil. "I think it would help a little," Naomi said, "Like I would have someone to give treats to, and to talk to, but… it still would't be Lilly."

Matt and I tucked two tired boys and three grief-stricken girls into bed this evening. Hannah's eyes were so swollen and red that she said, "Mom, look at me. I look like a zombie," and we laughed, and then we cried. "I just have this horrible, horrible feeling," she cried between sniffles, "I've never had anyone die before that I really loved. It feels horrible." I told her that I knew it hurt, and that it would keep hurting for awhile, and then I told her to rest and that her heart would heal in time.

When I came back down Liana was looking around the house for something: watching, listening, looking at me, looking at Matt. She hopped up on the table where Lilly's cage had sat and looked around and looked back at me. Even our cat was mourning the loss of her best friend. I gave her a pet and a nuzzle, but she is restless even still.

The house is quiet tonight, too quiet, and it probably will be for some time now.

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.

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."