Sometimes I can forget that she is still such a little girl!

On the way to school this morning, Katie and I had the following exchange:

Katie: There is something that I have been keeping secret, but I think I should tell you.
Me: (trying very hard to keep my voice neutral) Okay....
Katie: I don't want my friends to know this.
Me: Well, I can promise to not tell your friends, of course.
Katie: Okay. Well....(in a whisper) I think I can breathe underwater.

The healing power of Rock-n-Roll

Yesterday was a crappy day. I'll spare you the gory details, but it began with a roaring fight about a baby Panda bear at 7am, and slouched to a close with a defective diaper and a shirt, pants and socks (mine) drenched in urine at a public event.

Once the girls were in bed, however, and I dragged myself down the steps to exchange a few words with my husband (responsible for all of this, in a sense, because half of the genes that went into creating these little monsters came from him!) everything turned around.

Why? Because of this:




It is the best video game ever made!!! Anything that can take a tired, ragged housewife who faintly smells like baby pee and turn her into a Rock god is on the side of the Angels, if you ask me. I have no talent when it comes to videogames, and I bring Chris' scores down because I can't move out of the "easy" mode, but.......when the crowd starts singing along to the music I really, truly feel like I am making -- I am invincible.

The view from my room

This is my constant scenery these days: Lucy hanging on to my leg. She is really under the impression that baby-hood is for suckers, and she's determined to claw her way out of it as quickly as possible. She started crawling around 5 months, then quickly began to pull up on things. At 6 months old, she can already cruise all around the house, provided there is something to hold on to. Her favorite pass time is to seek me out, and then prevent me from moving anywhere by pulling up on my leg and then refusing to let go.

All of this precocity, however, comes with a price. Lucy's life is in constant danger, because my brain cannot keep up with her physical acumen. She fell down the steps three weeks ago because I misjudged how quickly she could make it from my side to the basement door. Yesterday, she again fell down the steps because it never, ever occurred to me that she could crawl all the way up them.

I was digging around in Katie and Beth's closet when it happened. The girls had all been playing in the living room, but suddenly - as a herd is want to do - they all moved upstairs. They closed the door to the steps, but I guess Lucy felt left out because when Beth opened the door she discovered the little thing almost at the top of the flight. Lucy was startled by the door, however, and she jerked back and fell all the way to the bottom. I heard the scream (both Lucy's and Beth's - who was almost as upset) and I somehow made it to the bottom to scoop Lucy up. I honestly don't know how I got down the steps - it felt like I just jumped down the entire flight, but something tells me that's just the adrenaline muddying my memory. My heart can't take much more of this, though, and I am pretty sure that Lucy's head really ought not take much more. So, back in the kitchen it is, acting as a human crutch for my baby who so desperately wants to learn how to walk. At least I know she's not in mortal peril when she's hanging onto my leg.

Walkin' in a Winter Wonderland

It is snowing today! Chris got a good crackling fire going around noon, Claire and Abbie and Lucy spent over an hour staring out of the windows just watching the snow falling, and Beth's teacher reprimanded me for not putting her in boots. * Winter has officially arrived!

The girls came up with an awesome game outside: they made complex mazes out of their footprints in the snow, and we spent a good long time trying to find our way out of them. I thought my maze was pretty cool - it took me a good 20 minutes to make it, and it wound all the way around our yard, but the girls told me that it was too easy. I will get my revenge the next time it snows.

*(Come on! Who needs to go through the hassle of boots in order to walk two feet from the door to the car, and another 10 feet on - shovelled!!-cement from the car to the school door. Her feet don't get wet. She hardly even needs a coat, she spends so little time in the actual outdoors.)

Is waterboarding at the Dentist's next?

I'm kind of weird about my eyes. I recognize this. I freely admit that a fear of ceiling fans (which could fall and slice your eyes apart while you sleep) and umbrellas (a dozen spikes hovering just above the level of your eyes??? Hello!!) is not normal. When the girls get pink eye the medication is administered by Chris, because I just can't bring myself to do it. If Chris is not available I drop the liquid near their eyes and then tilt their heads until it runs in more or less the right direction.

So. I'm kind of weird about my eyes. I've put off going to see the eye doctor because I know that they use eye drops to dilate your pupils, and I wasn't sure that I could handle it. My eyesight is not improving on its own, though, so it was time to suck it up and go in. On Wednesday I walked into an opthamologist's office for the first time in 10 years.

Initially, things went very well. I flinched and closed my eyes when the nurse put the drops in, but it only took four or five tries until it worked. (That may seem terrible, but I was just happy to have managed at all.) I asked the nurse how long it would take for my pupils to dilate, and she said, "Oh these drops aren't for dilation. It's to numb your pupils. Now hold still please and I'm going to push this little rod against your eye to see how firm it is."

Can this be possible? She was so very cavalier about the whole thing, as though shoving a glowing blue rod into your eye is no big deal, as easy and routine as reading those little letters on the wall. I literally jumped out of my chair and said, "Are you serious?" The nurse just looked at me as though I was being completely unreasonable. "Of course," she said, "How else can we check for glaucoma?"

I felt that it was unnecessary. I realize that I'm not all that knowledgeable about eye stuff but I didn't think it was a huge risk to assume that I don't have glaucoma, considering the fact that I am not going blind nor am I 80 years old. The nurse called the doctor in for reinforcement, and I suddenly found myself at the receiving end of the standard good-cop/bad-cop technique. The doctor, not to put too fine a point on it, was a jerk. I was stuck in that stupid plastic chair between the compassionate nurse and the evil doctor, as all the while a glowing blue rod was poised mere inches from my eye. I, as anyone who has ever watched Jack Bauer at work knows, had no chance.

Once I was done sobbing, they let me out into the waiting room while my pupils dilated. (Yes, I handled the dilation drops just fine, as they suddenly seemed very benign compared to the glowing blue rod of death.) There was another woman in the room who also looked like she had recently been crying. Once I sat down, I leaned over to her and said, "I didn't realize that a visit to the eye doctor came with a lesson in medieval torture." The woman laughed nervously, but just then the Evil Doctor walked past and shot me one of the most venomous looks I've ever encountered. I was completely cowered, and for the remainder of my wait the other prisoner.....um, I mean patient, and I sat in meek silence as we tried to make out the words in magazines through our distorted vision.

Moral of the story: there is no way in Hell I'll ever set foot in that office again. I have to wonder though: Is this really normal? Is it really a routine practice to take a glowing blue rod (the glowing and the blue is important) and shove it into the eye of every patient who walks in the door? Chris claims that his office checks for glaucoma using puffs of air, but I assure you that this was no puff of air. It was a glowing blue rod, and they put it directly INTO MY EYES. Please tell me that our society has not degenerated so much that everyone, everywhere should be expected to meekly line up and let some masochist in a white coat shove foreign objects directly into their eyes. Please give me some hope for the world.

Photo for Christmas card, take 1

Aaargh! I took close to 30 pictures yesterday, and this is the best I could come up with.
I don't think it is possible to get all of them to look at the camera, keep their eyes open, and smile without grimacing all at the same time. I need to up my photoshopping skills.

(By the way, Mom - the sweaters were a big hit!!!)

Thanksgiving by Beth

I am thankful for the trees. I am thankful for my sisters. I am thankful for my family because thay take care of me. I am thankful for my health. I am thankful for my teacher so I can lean. I am thankful for the car so I can go placeis.

Elisabeth

The cutest thing ever. Seriously

I really wish that I could upload home movies to our computer! I came downstairs yesterday right as Chris was putting a video on the t.v. for Abbie.



It's a favorite song of the family's right now, and I've heard it playing from downstairs many, many times but I didn't realize what big things were going on down there. Abbie has memorized the entire video. She follows along, and does every single dance move right along with the "1234 Girl." She even has Chris trained to swoop in during the scenes where the crowd picks the singer up, and he holds her in the air while she continues to dance. At the end, when the crowd dissapears behind the singer's back, Chris crouches down and pretends to hide behind Abbie.

It is perfect. And it was so freaking adorable that it almost made me cry. I love this kid! And I love this man, who has clearly done this hundreds of times while nobody was looking, playing this silly little game with this silly little girl and not caring even a little if it makes him look silly, too. It doesn't, of course. It makes him look like the best daddy ever.

they never understand that I really am in charge

Abbie really likes potato chips. So, today, she tried to wheedle some out of me before lunchtime. The strict rule around here is no snack-y things until after lunch. (Of course, had the email about her MRI come by then she may have encountered less resistance to her charms.) I kept firmly saying, "No."

Abbie was getting frustrated, and I could literally see the wheels turning behind those big blue eyes. She finally leaned in close to me and whispered very slowly and distincly, "If you do not give me a chip, I will not say please."

If she had been saying, "If you don't eat your meat, you won't get any pudding!" the tone would have been no different. I looked down at her and she had that don't-make-me-come-over-there Mommy Look, directed straight at me. Then she cocked her eyebrow. She clearly felt that she was fully in charge, and that withholding that "please" would punish me good and plenty.

No chips for her. But I hightailed it out there as fast as I could go, before she could see me laugh.

"Unremarkable"

"Unremarkable." It's a beautiful word! We got the official report today from Abbie's MRI, and they've seen no increased tumor growth, and less enhancement. The report ended with a sentence that made me so happy I laughed out loud:

The remaining spinal cord appears unremarkable with no contrast
enhancement appreciated.

After all that Abbie has gone through in the last year and a half, it is a miracle to think that her poor little traumatised spine is now "unremarkable." Do you know what that is? It's remarkable!

Why do moments like this seem to belong so particularly to the colder seasons?

Maybe it's the fire.

I am having what I used to refer, in my naive college days, as "an intrinsically happy moment." I was sitting on the floor, by the awesomely smoky and warm fire in the living room, flipping through a magazine to get ideas for Christmas. The girls were all playing in the hallway, perfectly in harmony: such moments are all the more sweeter for being so sadly rare. Lucy was sitting beside me, practicing her standing skills by pulling up on my knees, and all was quiet and cozy and right with the world. Chris came in to throw some more wood in the fire, and he brought me a glass of wine. Life could not possibly have been better.

I'm still sitting by the fire right now, on the laptop Chris gave me this summer, and I can't help but think about the different types of happy moment that come with each new season. For my money, nothing beats the cozy, rich warmth of fall and winter. It's chilly outside, and chilly in parts of the house; the warmth of the living room is so much more luxurious in comparison, and the crack and snap of the fire, the smell of the wood, the glow of the embers are so sensual (as in, they affect all the senses) that we are all lulled and mellowed. Even our Loudest (you know who she is) is quiet for once. (Well, quiet-er.)

I'm so blessed. I always know it, but moments like this help me to really feel it. Isn't that the way it's supposed to work, after all? Knowing a thing in our minds is never enough, not for the long term: we need to feel it through our bodies as well. And so God gives us, among other things, cold days. Cold days, and a fire for warmth.

(This happiness and relief, for the record, is due entirely to the cold/warm dichotomy. It has nothing to do with the fact that Abbie is in diapers today, taking a break from potty-training. Really, it's all about the fire.)

Because I'm sure you're dying to know how potty-training is going

Much better! That one horrible day seemed to be what we needed to get on track. Abbie has been doing great since.

She did backtrack some yesterday (with very good reason), though, and we had a very busy day today so I've kept her in pull-ups all day. Hopefully we won't have lost too much ground when we go back to underwear tomorrow.

Abbie had her routine MRI yesterday, and we haven't heard anything yet, so that's a good sign. She did amazingly well keeping her pull-up dry - she even kept it dry through the sedation! (Although the required fasting was probably responsible for that. ) She stayed dry throughout her recovery and the entire drive home, as well, though. She was very loopy and couldn't keep her balance after the sedation (perfectly normal), however, so we just kept her in a pull-up and gave her the day off.

Here's hoping tomorrow goes smoothly!

Go figure

I gave up today around 3pm.

This was the third day of potty-training, and by far the worst. For the past two days, Abbie has had very few accidents, but I suspected that she was just holding it all in until the evening when we put her diaper back on. So I stopped at the store this morning and bought a mega-jug of apple juice, and a pack of fiber-laced Pediasure.

It worked. It worked on the carpet, on a blanket, all over several outfits, and on those foam child-chairs with the cloth that can't be removed.

Abbie told me that she didn't use the potty because she didn't want to stop playing. At least she recognizes the problem. My (usually tried and true) method is to go straight from diaper to underwear (so no pull-ups) and make the child clean the mess themselves when they have an accident. I sneak in my own cleaning, of course, but the kid is given some paper towels to soak up the water and a bucket and scrub brush. They usually decide that it is less work to use the potty like a civilized human being, but it isn't working this time because Abbie thinks that the clean-up is fun. Meanwhile, I feel like I've been swimming in urine all day.

So I gave up after accident #umpteenth and put her in a pull-up. Not ten minutes later she jumped up and ran into the bathroom, executing her duties like a pro. Her pull-up was bone-dry.

I need a drink. (And I do not mean applejuice!)

I haven't been posting because

We are potty-training.

Pray for us.

And please avoid the hall bathroom.

More from All Hallow's Eve

Dorothy (from her school parade)
Sleeping Beauty (and yes, I know this is not the 'official' costume. The official costume is lame. This one actually makes her look like a princess, not some cheap shill for Disney.)
The Calico Cat (and Claire's second year as a cat!)
The Fairy ( I fixed the upside-down wings after taking the picture.)
The........uh, cute baby with wings. You don't need a coherent costume if you aren't actually getting candy.

Halloween, a photo essay in two posts

solving a mystery that has been bugging me

Abbie invented a song that she sings all. the. time. The crazy thing is that it is very catchy, and I'll often get it stuck in my head for the rest of the day once I've heard her singing it.

Here are the lyrics:

Puppy! Puppy! Puppy!
Do-da Botterini!
Puppy! Puppy! Puppy!
Do-da Botterini!

The lyrics had me intrigued, because it seemed like nonsense and yet.....Botterini really sounds like a name. I asked the other girls if they knew where Abbie got the idea for this song, but they were as clueless as I was. Abbie provided no insight, simply answering when asked, "Well, it means Puppy-d0-da-botterini, Mommy!"

This has been a mystery for weeks, until last night when we were talking about it over dinner. My father-in-law suddenly spoke and said, "That sounds like the last name of Mom's friends - The Botterini's."

!!!!! Of course!!! I guess Abbie must have overheard Grandma Mlinek talking about them, and something about the name must have tickled her fancy. How weird is that, though? I wonder if they have a puppy....

melodramatic, anyone?

Beth: "My two worst feelings ever are hate and crying."

Struggling to understand

I was asked to contribute a story for a Catholic book project, compiling stories from women with special medical diagnoses in utero or for small children. So, here's what I wrote:

They did not receive what had been promised
but saw it and greeted it from afar
and acknowledged themselves to be strangers and aliens on earth,
for those who speak thus show that they are seeking a homeland.
Hebrews 11: 13-14


When I heard the news I was sitting in the Pediatric Sedation waiting room, across from a terrible mural of sea-life. The painting was very colorful but the fish were all malformed, elongated and disproportionate. The shark’s fin had been drawn on a different angle from the rest of its body so that the fin lifted away, attached at only one corner. I remember thinking that the fin looked like it was going to escape, the shark on the verge of losing its most defining feature.

“Is she going to die?” I asked. I hadn’t meant to ask, but I was overwhelmed and frightened and it was the only thing I could think of to say. My eyes were still on the shark, his stupid floating fin making me angry. My 17 month old daughter was asleep next door, a large tumor having just been discovered in her spine and brain.

The radiologist was silent for a moment before answering. He was very earnestly and bravely trying to make eye contact with me, but I couldn’t do it. “I don’t have an answer for that,” he finally said. “She should not be able to move at all with a tumor that size. What we should focus on is the miracle that she can walk.” The tumor ran the entire length of her cervical spine and then up into her brain stem. The MRI images from that day are horrifying; to the untrained eye it looks as if her entire spine is filled with cement.

The staff called my husband, who was out of town, and then sent us immediately to Children’s National Medical Center in D.C. By that evening we were settled in a room on the Neuro/Ortho Surgery wing, where my husband eventually joined us. By the next morning, Abbie had begun to lose the co-ordination in her legs. She was no longer able to walk.

It had happened too quickly for us to fully process it. My memories of the days before her surgery are surreal. We rocked Abbie in her hospital bed and walked the halls in a bleary-eyed daze. I couldn’t sleep at night because I felt the need to savor every moment left to hold my baby. I don’t remember praying, but I am sure I tried. Prayer was very hard in those first few days, my mind was so overloaded and my heart so heavy that although I could turn my mind to God, I felt I had nothing to present to Him but a feeling sometimes of sorrow, sometimes of fear. I would hold Abbie in my arms and lift her to Him in my mind, but I did not know what to ask. I wanted her to live, certainly, and I wanted her to remain whole, and yet I felt afraid to ask for these things. The presence of God in those days was something I felt, but heavily, and with fear and trembling. In the sufferings of my child, I felt that I had encountered a side of God I had not really known, had heard of but not truly believed. My own suffering was a thing I expected, a thing just and deserved. But my child? This little baby on my lap, with her curly blond hair and her quirky little smile, and her innocence: was I expected to accept the suffering of this angel? How could that be?

On the day of her surgery I woke up curled around her, and just lay in the bed looking at her face. I held her, still sleeping, all the way to the prep area. My mind was blank; I did not, could not pray, I did not, could not think. The only thing I was capable of was soaking in my daughter and feeling my heart break with love for her. A nurse took our hands and said a prayer for our daughter’s safety, and we were grateful to her for initiating what we couldn’t. Then they took my baby away. We walked into the waiting room like zombies, and like zombies we sat for the 7 hours it took to rid my daughter’s spine of the tumor. I said one rosary, incapable of actually processing the prayer: it took me two hours. I had no words; in my heart was just one long wail to God, one long cry for help. I felt that for the first time I had some understanding of Christ’s cry of “Abba!” on the cross. I understood for the first time the anguish behind the question, “Why have you forsaken me?” When the surgeon appeared in the door, his eyes bloodshot and his face pale and lined, I thought I might collapse. My husband’s hands were shaking so much that he dropped his book and it skittered across the floor. I felt like Jacob on the mountaintop, poised to accept the sacrifice of my dearest one. An angel had saved Isaac, but I felt no assurance that Abbie would receive the same reprieve. The face of the surgeon said nothing but weariness, and the thirty seconds it took to walk across the waiting room to where he stood was the longest moment of my life. But mercy had prevailed, the news was positive. Abbie’s heart rate had given them trouble throughout the surgery but she had made it through okay. She was going to live. Time would tell if she would sustain damage, but he felt hopeful that she would eventually make a full recovery.

The surgeon had done his job well, and Abbie’s spine was almost entirely clear. There was still a large portion of the tumor in her brain stem, however, that would require chemotherapy and possibly radiation. We hardly had a thought for those hardships, however. We were giddy with joy, radiant with hope. Family came to visit her and was aghast at how weak she was, almost immobile, but all we could see was the hope in the faint wiggling of her fingers and toes. People assured us that they were praying for Abbie’s complete healing, but all we cared about was that she had lived. We were not looking for flashy miracles, healing our daughter through the gift of medicine gave no less glory to God In our eyes. We were so happy, so eager to help our daughter heal, and willing to open our minds to the mysterious workings of God. The question of why my daughter was allowed to suffer, now that she was safe, seemed a worthy academic pursuit, something we could ponder as she grew stronger day by day. Our mistake was in believing that we had approached the end of our journey.

Our God is a God of awe and majesty and mystery. These are not merely pretty words; it is a mistake to ever think that we know the plan of God, or that we can ever truly understand His ways. Two months after Abbie’s surgery, just as she was re-learning how to walk, she again lost control of her legs. The tumor, despite the weekly chemo treatments, had grown and she would again need to undergo surgery. When she had first been diagnosed with cancer we had been dazed and afraid, but now, after we felt we had put our trust in God and passed the test, now we were angry.

We admitted that the suffering of the innocent could bring about unthought-of graces. Abbie’s cancer had brought out the best in many of the people around us; family and friends, and even some complete strangers, had been so moved with pity by our daughter that the outpouring of love and support was truly overwhelming. There are many people who reached out to us in ways that will forever touch our hearts. Our other children as well had been moved to an Inspiring level of selflessness and bravery. We felt that the world around us was a better one for the influence of our little one. Now, though, now that the lessons had been learned and the faithfulness of those around us had been proven, why was our baby still called to suffer? Sure, her pain had brought out the best in those around her. Sure, it taught us lessons about our marriage, our family, our faith. Sure, it showed us how blessed we truly were. But still all of these lessons, all of this good fade to grey when you weigh it against the suffering of a baby, any baby, let alone our own darling one.

When Abbie was taken back for surgery a second time, the sedation did not work. She was awake, and terrified to find the strange doctor carrying her away from us. They assured us that she would have no memory of being taken away, but as she was carried out she began to cry, “Mommy, don’t! Please!” I walked to the waiting room with her voice haunting my ears. Over the next few hours her cries replayed in my mind over and over again until it was no longer her voice crying out to me, but me crying out to God. As she had cried out to me, so I was crying out to God with the sophistication of a toddler. I was grateful beyond words knowing that there were hundreds of people praying for Abbie at that moment, because I was again paralyzed in prayer. I felt that I was standing before God, and His Son, and even His gentle Mother whose comfort I had always sought, and I was lost in the weight of their purpose. My only prayer was a kind of sigh, a sigh of awe and fear and desperation. I felt like someone drowning, and I could only hope that the wave of prayers for my daughter would lift me up enough to catch my breath.
She again recovered better from the surgery than anyone could have hoped, and the rest of the year progressed much like we had expected it would. Abbie is walking again, and has just now been given a reprieve from chemo. To anyone who might see her in passing, she looks like a healthy, happy, sweet and silly little toddler. We are so grateful for her health, so grateful for her life. We have hope that her future will be a bright one, although there will always be a chance that the tumor in her brain will grow again. So mixed with our happiness is a sobering dash of fear. When I look back at our darkest days, I see the many blessings that have come from our crosses. Why the heaviest cross had to be carried by the weakest and most blameless among us, though, I will never understand. Abbie will probably not even remember her time spent recovering from brain and spine surgeries, but that does not lessen the memory of her suffering for those who love her. I carry a heavy question in my heart that will not, I think, be answered in this life, and yet my faith in God has not diminished. I am pained that He allowed my baby to suffer so much more than most people encounter over a lifetime, and yet I am thankful that in His mercy He did not take her from us. I suppose that I do not need to understand why it happened in the first place, anymore than Abbie understood why her parents allowed the doctors to carry her away. Perhaps there is some spiritual cancer hidden in me that could only be resected by the suffering of my child. Perhaps there is something greater at work, and Abbie’s suffering will right some wrong of which I will never know. It is perhaps not for me to know. I am simply called to believe, though I do not understand. Why would a God who is all-good allow an innocent child to suffer? It is a question I have no answer for. God allowed His Son, who was also innocent, to die on the Cross. That is the only answer I am given.

Good things!

I have been shamefully behind on here, and I have no excuse. Lots of good things have been happening, though, and it's time to talk about some of them!

First of all, Abbie is off the chemo! It was the best feeling to get the call from our pharmacy and be able to tell them that we won't be needing anything this month.

The scans of Abbie's tumor have shown no significant growth in the past year, so there is a good chance that the tumor is dormant. She'll continue to get scans every couple months, and as long as the tumor stays stable we will....just live a normal life. :) We are so happy to give her scrawny little body a chance to recover, and the break from the many hospital visits is a nice bonus. She continues to get stronger, and in fact was released from PT shortly before the end-of-chemo appointment. I could tell that the physical therapist was sad to discharge Abbie, and I felt like it was this all over again. This PT was a wonderful woman, and we liked the group therapy sessions but as the girls would say, see ya, sucker-john-suckers! With the end of each cancer-related activity it feels like we are slowly climbing our way out of some underground bunker, where each step brings us a little more fresh air. It is a good, good feeling.

Also, making all of the girls super-excited, we got this:

It is official! The Make-a-Wish Foundation is sending us to Disney World this winter! We still can't believe it!!! The Make-a-Wish people have been truly amazing, and I have been more and more impressed with this organization with every passing week. They've been sending little things in the mail to keep Abbie excited until the big trip, and they have been remembering the other girls as well. They really think of everything. It's hard to believe that we qualify for this, especially since Abbie is doing so very well. I'm grateful, though, because it has been so nice to see the girls this excited.

So - good things going on around here! I'm not particularly the hand-waving type but: Praise God, from who all blessing flow.