Sunday, October 14, 2007
solving a mystery that has been bugging me
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....
Monday, October 01, 2007
Struggling to understand
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.
Tuesday, September 25, 2007
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.
Monday, September 17, 2007
Too much girl power
"Jesus doesn't know I'm a person," Abbie said.
"You mean, you don't think Jesus knows who you are?" I asked her.
"Well, yes, but then Jesus showed me her baby! It was very cute."
??? There were so many things wrong with this that I didn't know where to begin. I plowed through, though, and thought I did a pretty good job, considering the fact that I had somehow allowed my child to form the belief that Jesus is a girl.....who has a baby.
I thought I had cleared the air, but then Claire piped up, "Well Jesus is a boy, Abbie. Because God is a girl!"
"Um, no" I corrected her, "God is also a boy."
"No silly! God is a girl!"
"No, really," I told Claire, realizing that she considered it a matter of course that God is female. "God really is a boy. Male. I mean - God is the Father, Jesus is the Son." The sands were too precarious to even begin to explain the Holy Spirit here.
"Really?" asked Claire. "That's so strange."
"Yeah!" said Abbie, very emphatically beside her, "That is crazy."
Too much of a good thing
Claire especially appreciated it. We knew this because she wolfed down her vanilla cupcake with chocolate frosting, and then she then proceeded to eat the paper wrapper. Chris asked her why her mouth was still so full, and she sheepishly spit the paper back onto her plate. Disgust and horror ensued.
They are good cupcakes, though.
Thursday, September 06, 2007
I swear it isn't true, but there's no way I can dig out of this hole
Thank God this woman has a sense of humor!
Sunday, September 02, 2007
Thursday, August 30, 2007
Wednesday, August 29, 2007
It Figures
Lucy hasn't slept a wink since.
Seriously, she has been taking 30 min naps instead of her usual 3 hr ones (just enough time for me to get Claire and Abbie settled, and grab my towel to hop into the shower, but not enough time to actually get into the shower.) She's also decided that it is fun to stay awake all night long. If I bring her into bed with us, she will giggle and pull my hair, kick Chris, nurse/stop nursing/nurse/stop nursing in rapid succession, and generally do other "awake" kind of things. If I actually get up and stumble to the couch to give her a bottle and re-settle her, she smiles and laughs at me and......doesn't go back to sleep. She's not crying during this or in any way unhappy. She's perfectly cheerful, but that isn't as cute as it can be when what I want is for her to be perfectly asleep.
So. I direct all of you to this blog, from a woman who is researching "The Five Stages of Exhaustion." I think she is really onto something; it describes exactly how these past 7 years have felt for me, but I am too tired to actually write something like that myself.
Tuesday, August 28, 2007
Thursday, August 23, 2007
Feelin' Groovy
I heard somebody's good news yesterday, and I am very excited for her! (And her husband, I guess it's his news, too!) Something happened when I heard it, though, that took me by surprise because it never happens to me. I felt a teeny-tiny twinge of baby lust. Usually my reaction when others are expecting is to A) feel reallyreally happy for them, and B) feel reallyreally glad it isn't me. But this time I thought, "Oooooooh, babies are so great!"
Part of this, of course, is due to the fact that Lucy is the greatest baby on the face of the earth. No, seriously, she is. She's almost always happy, sleeps wonderfully (as long as I swaddle her tightly enough to keep her from rolling over), and smiles and giggles at us until we are all puddles of goo at her feet. Even Abbie, who is........feeling every inch of her two years, to put it delicately, is more than happy to lay any of her own needs or wants aside in order to keep Lucy's happy gurgles coming. It is easy to think about another baby when my current one requires about as much attention as Baby Zuttini Bread (who, by the way, isn't looking so hot these days.)
This is a weird place for me to be. I hardly expected to feel like life was getting easy enough to actually plan for another baby after struggling through five. But these kids just get more and more fun with every passing day, and I guess I'm finally feeling comfortable in my role as a mother - not just a girl with kids. This isn't to say that we are actually planning anything; we aren't. I don't know what God has in His plan for our family, and we aren't really in a place to figure it out right now. But don't bother asking me if we're done. I'm having too much fun to give any kind of definite answer.
Is this my life? Really?
Chris: Where is Abbie?
Claire: She's sitting on the steps, stinkin' up!
Chris (to Abbie, who just walked in) Are you poopie?
Abbie, nonchalantly: Yup. Sure am.
Later on, Beth warned me that Abbie had (again) taken her diaper off. I ran upstairs to find her, naked, sitting on her training potty. Directly across from her sat Claire, and before I opened the door I heard Claire say, "Just watch me, Abbie, and I'll show you how it's done!"
Tuesday, August 21, 2007
Mom, you are going to LOVE this
Cleaning the upstairs bathroom this morning, I noticed several toothbrushes missing.
Me, to Beth: Why aren't the toothbrushes in the cup?
Beth: Oh, we left them at Grandma's house.
Me, thinking you left Grandma's house on SUNDAY!: So everytime I asked you guys if you brushed your teeth, and you all answered, "yes".......
Beth: We were just brushing with our fingers.
Scary thing here is that this is a scene directly out of my childhood, Grandma's house, finger-brushing and all. The only difference, to my shame, is the amount of time elapsed before discovery. Luckily for the girls I couldn't flip out too terribly much, seeing how I once went an entire week under the same circumstance.
Lucky for them, indeed.
Thursday, August 16, 2007
The truth laid bare
But Abbie is ready. She's been ready for a while, but I've had concerns about her small motor strength. I mean, she has a brain tumor and all; I should really give myself - I mean her, I should give her, of course, ha ha! - a break. Give her a chance to build up her strength, you know........ Unfortunately, her motor skills have improved enough that she has the ability to take her diaper off at will. And take it off she does, several times a day. She will keep it dry for a few hours and then suddenly soak it through, but instead of informing me that she needs a change now, she'll just take it off and wait until the panicked cries of her sisters alert me to the situation.
Sunday, though, is when I had to admit defeat. The time has come to pull out the old (disgusting, stinking) training potty. On second thought, the time has come to buy a new one so that we have at least a few days until it too becomes unbearable and un-cleanable.
See, we were at mass on Sunday, and the girls were all behaving beautifully. At one point Abbie began to stage-whisper to me about her diaper, but I shushed her quickly and she quieted down. It was all just going so well, even Lucy was being quiet and reverent. Abbie remained silent beside me, wiggling around of course, but I hardly even notice that anymore. I'm not sure what prompted me to look down at her, perhaps it was an impression that there was more flesh-color than usual in my peripheral vision. I looked down, and saw Abbie beside me with her rear-end bare for all the world (and all the back of the church) to see. Her diaper had been bugging her, so she just pulled it around her ankles, taking her skirt with it. Due to the nature of our five curious girls, Chris and I usually alert each other clearly if we need to take someone out of mass, but there was no time in this scenario. I grabbed Abbie, bare bottom and all, and hauled out of there as fast as I could. We were in the bathroom before my frazzled mind settled and I realized that I hadn't even tried to cover her backside up during our retreat.
Oh well. I'm sure some people were appalled, and some people amused. I'm mostly sure, though, that Abbie's diapered days are numbered.
too much of a good thing
My mom is taking the older three girls for a couple of days, and she called to ask them what they would like to eat during their stay at her house. When she asked Beth this question, she responded, "Anything, really......well, not zucchini."
Friday, August 10, 2007
Not exactly like Nietzsche
I guess Claire was concerned yesterday about Lucy's mental health, because she came up with a clever idea to keep her from rolling over. She was working diligently in the living room, where Lucy was stretched out, quietly for once, on the floor, when Claire proudly called me in to see her solution. She had surrounded Lucy with pillows, the idea being that Lucy wouldn't roll onto them, and would thus stay on her back. (This doesn't actually work, but it was sweet of Claire to try.)
As I was thanking Claire for all her hard work, we both looked down at Lucy on the floor, surrounded on all four sides by the pillows. It sort of had the general shape of a cross, Lucy spread out in the middle. Claire looked up at me and said, "Hey! Lucy looks just like the dead God!"
Monday, August 06, 2007
Uh-oh.
It's hard to be angry at this little goof, though. Her response when I come to get her is always the same: when the hall light comes on, she stops crying, and when she sees my face over the rim of her crib she gives me a huge smile and a gurgle. Too sweet, too cute........but a little too often as well.
(As a note, I don't know that I have mentioned Lucy's eye on here, but I know this picture really highlights it. She has had a cyst on her eyelid since her third week of life, and it has been slowly growing bigger ever since. We are monitoring it, and hoping for the best. If it begins to damage her eyesight then we will need to consider our options, but for now it isn't bothering her so it isn't bothering us.)
Purty little girls!
Wednesday, August 01, 2007
The life and times of Baby Zuttini
But then an hour or two later the Make-A-Wish Foundation volunteers came over to ask Abbie what her wish is. The first thing she did - and I mean the very, very first thing - was to dash downstairs and grab Baby Zuttini Bread so that she could introduce it to them. They were, of course, very impressed with Abbie's beloved vegetable.
Her wish, by the way, was to go to Walt Disney World. Those of you who know me well may laugh at that, knowing my long, deep hatred of all things Disney - his fake "World" in particular- but.........the Make A Wish setup is pretty sweet, and I need to set my personal distaste aside because the girls will really enjoy it. We'll find out in a couple of weeks if her wish is granted (and it probably will be.) I'm just hoping, at this point, that come January we won't need to tote along a withered and mummified Baby Zuttini Bread.....