Friday, February 25, 2005

Misery Olympics

I was just sitting around chatting with my husband the other night about the issue du jour on some of the blogs I enjoy. When I gave my husband the set-up, he responded immediately with exactly the same thoughts that I have on the whole hoolabaloo.

Me, beaming: "Wow! Noone else said exactly that same thing, and that's just exactly what I think! I knew I married you for a good reason."

Him, pointedly: "Well, that just goes to show you should spend less time involved in those internet-y discussions and more time talking to me."

Me, getting his point, although I said: "Well, discussions aren't always as much fun when you agree on everything. But it is too bad when everyone gets all upset over the disagreement."

Him: "Well, that just goes to show that you just shouldn't talk to people."
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Once again my beloved curmudgeon of a husband cuts straight to the heart of the problem. Talking to people is hard. We are always saying hurtful things with the best of intentions. We talk to connect to one another, but often end up alienating one another instead. And in talking to one another, we cannot help but compare their experiences with our own. We are, at heart, supremely self-centered beings. I don't mean that in a necessarily derogatory manner, and I do think that in our best moments we do try to be empathetic creatures. But the sad fact is that none of us is completely able to understand the feelings of another--there's no vulcan mind-meld available to simplify the process of trying to understand.

But still we do talk to one another. Or we write things, and wait for a response from somebody, somewhere. Mostly what we wait for is a positive response, truth be told. And mostly what we write about are our difficulties, and our pain. Even if we write about it with a light-hearted tone and even if we acknowledge that, really it's not such a big deal but gee wouldn't it be nice if DD could just master the potty sometime before she graduates high school? And mostly what we end up getting back is, "Yeah, I know. My DD just finished her Ph.D. and I'm still buying those night-time pull-ups and calling to make sure she remembered to wipe every day." There's something about upping the conversational ante by pulling out your own experience, which was oh-so-much-worse, that is just irresistible to us. I mean, imagine the same conversation above, but instead of responding with the story of Dr. Skidmarks, instead you get someone who says. "Oh, I'm sorry, dear. My DD was potty-trained shortly after her first birthday. You just have to be firm, you know." Ugh. What a killjoy. I can guarantee that that conversation is going nowhere.

Eventually, though, we're going to start talking about something much more emotionally fraught than potty training (although that is really pretty darn fraught when you're holding yet another pair of pooped up undies in your hand). Eventually we start talking about our depression, our battle with cancer, and our children's pain. And suddenly responses that "up the ante" just aren't the same anymore. Suddenly those comments start to feel agressive, as if they are belittling your pain. And sometimes those comments really are agressive, and really are belittling your pain. Sometimes they take the form of, "You're kidding me, right? You have no idea what pain is. Here's what I've gone through. So shut up." Or sometimes those comments are more well-intentioned and take the form of, "Hey. It can get sooooo much more worse. So get a bit of perspective and count your blessings, OK?" It becomes the Olympics of Misery, with story after story, each one more horrifying than the last.

The first approach, I'll call it the "Shut Up" approach, is just completely useless and mean. But there aren't that many people out there who have the cajones to take this full-on in your face attitude. The second, I'll call it "Shucks, just here to help," is rampant. Actually this approach is just the first approach prettied up some, but I do believe that it can come from a well of good intentions. But really "Shucks, just here to help" is no more helpful than "Shut Up."

The main problem, which many have noted, with this sort of "perspective-adjustment" is that it seems to lead to the conclusion that noone is allowed to feel pain as long as there is some way the situation could be worse. And that's just not reasonable, is it? I guess one could argue that there is some place along the pain spectrum at which the situation is bad enough that it warrants a bit of bitch and moan, but I can't for the life of me think who would be qualified to make that cut.

Most of the time my own perspective adjustment is coming from my own personal constant internal evaluation, that little voice that picks apart every moment of our lives and examines it for any tasty nuggets of Life Wisdom. We humans are these odd creatures, the range of our emotions mostly defined by our own experience and just not good at all at figuring out how to feel based on someone else's experience. In my own life, I remember that first blood draw on my daughter at 4 weeks, and it was absolutely horrible. The worst feeling I had ever felt in the world at that time. Within a year, we had gone to a place so much more horrible that that blood draw seems ridiculous now. We still go for blood draws on a weekly basis, and they're no big deal now.

So I have found a new perspective, but I suspect that much of that has to do with my own experiences. Still, isn't possible that we really are capable of learning from listening? I think it has happened to me, but only in my less emotional times, when things are going relatively well for me and my family. I certainly hesitate to think that I would use someone's life as an example of "At Least That's Not Me" to try to keep my own sun shining, but there are certainly times when someone is able to remind me to be grateful. The best example of my own perspective adjustment was from a total stranger, and she did it in just 4 words.

It happened like this: One day Annika and I were at the mall, and Anni wanted to play on the coin-operated rides right outside of Kohl's that function like the La Brea Tar Pits for Young Children--just try and drag them away from those little cars and trains with blinking lights that offer less motion than most infant swings (at 50 cents a pop). Luckily, Anni didn't actually need the stuff to be moving to have fun, and so I just sat down next to another mother to watch our kids clambering over the equipment. We started talking, as mothers always do to while away the massive amounts of time we spend just watching our offspring's every movement, and of course the subject of Annika's transplant came up. Now, usually when this comes up the other mom will gasp and say, "Oh my gosh! How have you all made it through all that? That must have been so hard!" etc. etc. But this mom, with her accent clearly placing her as a citizen of an African country, just said with all wonder and seriousness in her voice, "You are very lucky." And that was all that she said on the subject. But with those few words, I remembered that a large portion of the world does not even have access to basic health care for children, much less transplants. And even in those countries that do offer transplants, there are very many that have organ donor rates so low as to make a transplant for a child extremely unlikely.

And of course I know how lucky we are without having to be told on a daily basis. But it's nice to be reminded sometimes. In a non-aggressive fashion, of course.

Monday, February 21, 2005

an open call

I've been thinking about inspiration
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and writing and the entries I would love to read and comment on (or maybe you're all just busy leading your incredibly complicated lives!). It's probably because I've lately started to read books by writers about the whole process of writing. Currently, I'm on the excellent Bird by Bird by Anne Lamott (yes, Robyn, your essay sent me in this direction).

In case you would like some ideas to respond to for an entry, here are some I've been thinking about lately:

  • How has your relationship with your husband/family/other children/friends changed since your child's birth/diagnosis? What are the changes for the good, and also the less good (if you know what I mean, and I think you do)?

  • What are the dreams you have for your child? Are there any obstacles to those dreams? Does your child have his/her own dreams for him/herself?

  • What's the most amazing thing your child has ever said/done?

  • What's the most amazing thing someone else has ever said/done for you?

  • What's the most hurtful thing someone else has ever said/done to you? Did they intend it hurtfully? How did you respond? Do you wish you had responded differently?


    OK, I could go on and on (and you know that's oh so true), but that's enough for now. So maybe over the next few days you all might want to pick one of these topics and see if you can come up with a paragraph or two (or more, if you're like me).
  • I love it when........

    Often times, as the parent of a child with special needs (especially one with developmental delays) we are forced to focus on what our children can not do or does not do. I am feeling a little down today, so I made a list of some of the things I love about Noah and wanted to share them.....
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    I love it when Noah..........

    * Says Mama. He accents the second syllable. Too cute!

    * Wakes up early on Saturday mornings in the silliest mood and get in the bed with me and Daddy.

    * "Yells" at me with signs. (If I am not paying complete attention to Noah and he is signing to me, he will sign really forcefully until I pay attention!)

    * Brings books to me to read. That child LOVES to read!

    * Wants me to teach him new things.

    * Sits in my lap at the computer and “helps” me build websites.

    * Gets “stuck” on my cheek when giving me a kiss.

    * Holds my hand on the roller coasters without me asking him to!

    * Gets concerned about people if they are not feeling well.

    * Bounces on his knees like Tigger!

    * Gets excited and does that crazy thing he does with his arms!

    * Rides all snuggled up in his wagon.

    * Pokes that lower lip out just like I used to!! :)

    * Is silly!!!!!!! He can be soooo silly!

    * Sign to me!

    * Slides down the slides at the parks!

    * Asks me to sing to him.

    * Navigates his own way in his wheelchair!

    * Crawls down the stairs backwards! (Ok, so it was a little scary the first time he did it!)

    * Wants me to sing along with his Signing Time Videos! And fusses at me if I don't do all the signs!

    Saturday, February 19, 2005

    tonight is not the night

    I posted this on my personal blog, but it also seemed appropriate here. Forgive the double posting.

    The unfinished entry for this journal that I currently have sitting on my desktop will be unfinished for a while. It's not a bad entry as entries go, perhaps a tad heavy on the sarcasm. But today another little one lost her battle with the dreadful liver disease that haunted Annika's first year of life. A transplant came for this little girl, but she was just too sick to make it through the grueling surgery.
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    I didn't know this little girl at all, but followed her progress through her mom's updates on her website, and through our on-line support group. I didn't know her at all, but I knew that feeling her parents had every time they posted that she was getting sicker. I didn't know her at all, but it was plain to see that her parents loved her with all their might and I knew that feeling, too. I didn't know her at all, and now I will never have the chance to.

    And her parents have gone to a place I know nothing of, either. That place you live when someone you have loved and cared for and fought for so hard is no longer there for you to hold and hug and whisper to in the dark night.

    So tonight I cannot write about that stuff I was going to write about. That stuff not even worth mentioning right now. All my little complaints are just signs that life is continuing on here, in all its sometimes maddening glory. And I hate that her parents will never have a chance to complain about how hard it is to get a toddler to do _________ (fill in the blank, the possibilities are endless).

    A few hours after reading the sad news, I was rocking Frankie to sleep and perusing my usual blog reading. On the incredibly popular and highly addictive dooce.com, the entry today found Heather bemoaning her daughter's blood draw, not a regular part of her daughter's life. And there was that part of me shaking my head and saying, "Geez, a lousy blood draw. Is that really so terrible?" And then two seconds later I was kicking myself, and picturing Heather, dooce's author, flipping me off for my judgmental thoughts, as I'm sure she would very well do had she been privvy to them. If we aren't doing our damnedest to help our children avoid suffering, and hating it with every fiber of our being when we can't keep them from pain, no matter how large or small, well then we just aren't doing our jobs as parents. That's what we do.

    But still. Today a little one who had to struggle so hard for every single day lost her struggle, and the enormity of that fact dwarfs anything else I might have to say today. Maybe tomorrow, maybe the next day... But tonight is not the night.

    Wednesday, February 16, 2005

    Down

    It’s here again
    the morning
    I rise
    bleary eyed, never fully rested,
    nightmares of bleeds echoed through my night

    But there she is
    in her curly, red, bed-head,
    a sandy-eyed smile
    “Is it morning yet?”
    yes, morning, it’s here
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    As the coffee brews
    my eyes scan the sea of plastic bottles
    order and amounts etched in my mind

    But still,
    I check the schedule
    perfection on paper
    it calls out it’s orders
    screams at me hourly
    for checkmarks

    The negotiations begin
    please, please open your mouth
    here is a chaser of juice, ice cream, popscicle, whatever
    as long as it goes down

    And it does…
    only fourteen more times
    fourteen more battles to fight today
    so that I get my beloved check mark
    on my beloved, perfect, anal-retentive chart

    The IV pole stands tall and stares at me
    and the pumps
    they need me to push their buttons
    to feed them tubing
    they are always hungry

    more negotiations
    please sit still
    it’s just for an hour or so
    every day
    for a while

    here, here,
    here’s your favorite TV show, video tape, computer game, whatever
    to help you
    to distract you from the tubing
    that is attached to you
    it’s only 100 more days, 99 more days, 98 more days
    count down

    9 a.m. “Mom? Is the mail here yet?”
    10 a.m. “Mom? Is the mail here yet?”
    11 a.m. “Mom? Is the mail here yet?”
    “No, the red flags are still up honey”

    I shudder to think
    that today is the day the cards stop coming
    just a few straggle in now
    belated well wishes
    the highlight of our bubble-like existence
    the walk to the mailbox

    There are none today
    my fears confirmed
    she cries
    my heart breaks

    I check the other “box”
    “You’ve got mail!”
    79 e-mails begging me to buy Viagra, Vicodin or Valium
    the other 12 asking if I need a larger male part
    even though I don’t have one.
    not even one email that matters

    I’m down today
    I know this will pass
    but it’s lonely here
    in isolation

    I should be grateful
    her health
    THE GIFT
    the donor family
    I’m not allowed to be down
    it’s blasphemous really
    how could I?

    The whirlpool of emotions
    suddenly, insistently, interrupted
    beep, beep, beep
    “Mom, my pump is done!”

    Yes, it’s done
    and so is my pity party
    buttons pushed
    checkmarks marked
    negotiations over

    A minute of my own
    worry makes me hungry
    now the search
    cookies? chocolate? candy?
    left over from Christmas?
    I don’t care!
    it makes me feel better
    for that minute, for that second
    there isn’t enough
    two bite-size Mr. Goodbars don’t fix my craving

    I could eat a mountain of chocolate
    when I’m down

    -Mika
    February 17, 2005

    Tuesday, February 15, 2005

    King Noah

    I have always been amazed at Noah’s ability to care for others. He has always shown concern and compassion for those around him.
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    When his school recently began a contest to raise money for a local charity, I knew he would want to help others and would participate in the contest.

    Each child was supposed to collect money over the course of a few weeks. Each cent raised would count as a vote. The boy/girl with the most votes would be crowned King/Queen.

    I made Noah a little bucket with his pic and a brief explanation of the contest. He was so cute when people would put money in it. He would sign “more” and really like the dollar bills better the coins!

    Noah ended up raising $73.86 and was crowned King of the elementary division! He was sooo proud of himself!

    And I am too!

    .

    Monday, February 14, 2005

    Letter to Noah

    Moreena had a great idea after reading my post entitled "What do you call a person with a disability." Her suggestion was to write a letter to Noah about how I may address this very subject. My letter to Noah is below.
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    My Noahie,

    As your Mama, one of my jobs has always been to protect you. But as you grow older, it will get harder and harder for me to protect you from some things. I know you have noticed that you're special and different from others. Sometimes, other people may say mean things to you or make fun of you because you're different. I know this hurts your feelings, it hurts mine too.

    You just have to not listen to them. They’re just jealous because they are not as special as you. When someone is mean to you, remember the good things about your self. Remember how smart you are and how much sign language you know and how you’re brave enough to ride the big roller coasters. Remember how many people in our community love you and pray for you and have showed you their support time and time again. Remember that your whole entire family loves you so much and we are so proud and lucky to have you in our family and lives!

    I know you have seen me handing out the brochures we made about cerebral palsy before. I believe that sometimes when people stare or make comments - it’s not always because they are trying to be mean. They may just be uneducated, meaning they don’t know very much about cerebral palsy. So sometimes we may have to tell them a little bit about cerebral palsy and teach them that you’re not that different from everyone else!

    You know how when Mama is sad sometimes she reads things that make her feel better? Well, the chorus of this song we hear on the radio sometimes makes Mama think of you. When you are sad, think of the words…..

    “Don't laugh at me,
    Don't call me names.
    Don't get your pleasure from my pain,
    In God's eyes we're all the same,
    Someday we'll all have perfect wings.”


    You’re so special baby boy, don’t you ever forget it!

    Love,

    Mama

    Wednesday, February 09, 2005

    A Mother's Instinct

    What do you do when a doctor won’t listen to you when you tell them your child is sick and is dying right before your eyes?
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    Sitting in that hospital room, watching Anthony throw up every feeding we tried (whether by bottle, breast or NG), I knew something was wrong.From the minute he was born, Anthony has always kept down every ounce of breast milk or formula we gave him.He could finish a feeding and be tossed in the air…never would he spit up.So watching him that day, I knew something was wrong.No fever, no pain, no ascites (the rare occasion!), no cold, no pneumonia (we had JUST gotten rid of that!), nothing.He would just spit up the second he swallowed anything.My mom and I exchanged looks: This is NOT our Anthony.

    In walks the doctor, not our regular GI but the one filling in that day.She looks at Anthony, looks at his chart, and says, “We are not treating this child for anything.He must go outpatient.”The arguments started, with me telling her that if she would just have someone contact the insurance, they would allow Anthony to stay inpatient.“I am not willing to do that,” says she.But my baby is sick!He’s throwing up!And this is her response: “Are you a doctor? No!You are just his mother.You could not possibly know that something is wrong!”And why did I not kill her at that moment?I don’t know.But I did tell her that we would be in the ICU before twelve hours was up.So, outpatient we go at 4:00 in the afternoon.

    That night, at our apartment less than a block from the hospital, Anthony resumes the throwing up.Along with that came a dirty diaper.This happened about every 30 minutes, whether we fed Anthony or not.Then it came every 10 minutes.Finally, when he was throwing up and pooping every FIVE minutes, I called the hospital.

    “Bring him in immediately” was their response.It’s –13 degrees outside.We pack up everything we might need in the stroller, put about 100 layers of clothes and blankets on Anthony and off we go.It’s midnight.

    Once we get to the Treatment Center at the hospital, a very incompetent resident asks a million inane questions, we go through the “Why we are Here” spiel, and then are whisked off to the ICU.Anthony is asleep in his bed.My mom and I are resting in chairs.It’s 3:00 in the morning.I am fuming.

    The next morning, our regular GI is back, and he has some bad news.“Anthony’s liver has shut down.We need to put him at Status One, and hope that he gets his new liver.If your husband wants to be the donor, he needs to get here NOW.”Huh.Really.You mean, my child is sick?I didn’t know that!

    One day later, my husband’s liver saves my son’s life and I have filed a complaint against this other GI.We were told that if the team had waited one more day, Anthony wouldn’t have made it.His liver was digesting itself, and he was passing pieces of liver in every stool.His body was shutting itself down.His kidneys almost failed.His heart was straining to beat.His lungs had almost filled with fluid.And the new liver? Produced bile immediately.The kidneys popped back to life, his heart pumped and beat like it should, the fluid disappeared, and I had a pink baby!

    A mother's instinct is strong. I wish more doctors would listen to it.

    What do you call someone with a disability?

    As children start school and begin mixing with other children, sometimes it is noticed, that one child is "different" from the others. Continue reading...He may be teased, made fun of, the last one picked to be on a team, and called names.

    Historically, people with disabilities were viewed as hopeless children who grow to become hopeless adults, depending on someone else. In the olden days, a disabled child would typically be sent to an institution to be cared for. They were not seen as having a future and were treated poorly, teased, and made fun of!

    Welcome to the new millenium! Time are changing and nearly 49 million people living in the US having some form of a disability (that's 1 out of 5, folks) So obviously the stereotypes are myths, because these people do have a future and they do have feelings!

    They are not retarded, dumb, cripple, mute, or defective. They are people just like you and me. They are just different!

    So, you ask what do you call an individual with a disability?? You call them women, men, boys, girls, students, your teacher, doctor, neighbor, friend, athelete, brunettes, blondes, southerners, Texans, members, leaders, your Mom, your sister or brother, or and any other word you would call a person.

    I call him Noah.

    Tuesday, February 08, 2005

    Amazing

    In the pregnancy book I pored over every night while we waited for Annika's arrival, there was a chapter called "When There's a Problem." The author recommended not reading the chapter if all was going well, lest my hormone-addled brain be filled with unnecessary worry.
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    Of course I read it anyway. But most of the parenting and pregnancy magazines stuck closely to the picture we had mentally painted ourselves, in which the sleepless nights with a newborn were going to be our biggest hurdle.

    When Annika was born, we believed that she was perfectly healthy for exactly four weeks. And then, in the span of a short 10 days, we were forced to readjust our idea of family life as we handed Annika off to surgeons for the first time. That jump from living life as we read about it in a magazine to the forbidden chapter left us, and most families I've spoken to about that time, feeling incredibly isolated. But most of us eventually turn to a local or on-line support group, and soon realize that, just because we didn't read about kids like ours in the pages of most of those magazines, they are out there, and they are really some amazing kids.

    And we also come to know that there are also other parents/brothers/sisters who understand the despair of the low times and the joys of the good times. Parents of kids with major "issues" are among the most cautious people about saying "I understand what you're going through..." to anyone, because they have seen that loss and sorrow come in millions of shades, each heartbreak uniquely distinguished by the individuality of the family members involved.

    When we were first discussing transplant with a surgeon (not the one who eventually did her transplant), we asked about quality of life for her after she was transplanted. He brushed the question aside, literally waving his hands as if to shoo such petty concerns aside, "Normal life! Perfectly normal!" And that was the end of the discussion for him. I can only say, Thank God for support groups. Talk about not understanding the dynamics of life post-transplant. I guess I have heard of a few kids who received their liver, and then went on to live life as if they had just been to the dentist to have a few fillings in; they seem almost mythical creatures. I mean, even under the best of circumstances, they are usually still taking some pretty hard-core drugs that mean normal childhood illnesses can lead to some really nail-biting times.

    I can't say that Anni's life is not "normal," whatever that means anyway. Normal is one of those terribly relative terms. I do know that not many of her classmates at preschool doctor-play includes placing NG-tubes, I.V.'s, or holding still for a gas mask. I doubt that many of them have burst into tears while playing at the sudden thought of returning to the hospital. I doubt that many of them will turn into teenagers, sullen at their parents for insisting that she takes her med's 5 times a day (will there be fewer then, finally?) with all their unpleasant side-effects. I wonder if any of them are as worried about death as she is now, at age 4.

    But I'm not so naive that I don't know that it could be much harder, or that all kids have their own worrisome moments that give their parents pause. Instead of wondering about "normal life," with all its unpleasantly sticky associations, I prefer to note that Annika has an extremely happy life. In the end I think this is a much better way to think of our kids' lives, rather than how many standard deviations we are away from some mid-line value on somebody's quality of life scale.

    Nonetheless, we all have our low moments, when it feels so unfair to see our kids go through whatever particular hard time they are facing. And then the support groups can be invaluable, because sometimes you just need to vent and hear back from someone, "Yes, that just completely sucks." And not just from anyone, but from someone who really knows just how much it really does suck. But sometimes, the best part of the support group is hearing the stories of the kids themselves.

    At my particular support group, C.L.A.S.S., it's been a rough week. So many of the kids are sick, and some of them have just been through nightmarishly harrowing experiences--brain bleeds, transplants that failed spectacularly, perforated bowels, esophageal bleeds, bacterial infections. And suddenly you find yourself logging on obsessively, but warily, worried that some fresh bit of bad news is waiting. But then you read something one of the kids has said or done, and you can't imagine living your life any other way--it is just that fantastic. One of the moms wrote about her daughter's brain bleed on her Caring Bridge page, the Feb. 6, 2005 entry. It's worth clicking over and reading the whole thing, but my favorite part was Haley's response to the neurosurgeon who warned that her sense of touch might be lost with another bleed: "As long as it's not my fashion sense!" And soon after absorbing all the bad news, she was thinking of developing a website to send hats to kids who have lost their hair (her hospital tip? "Never let a neurosurgeon cut your hair.").

    Everyday our kids do and say amazing stuff, and even when times are the worst. So my question to you all is this: Do you have a story to tell about a bad time that found you looking in amazement at that little wonder, your own child? It doesn't have to be a dramatic event like Haley's. There are lots of challenges every day that our kids face, giving them the opportunity to wow us with their responses. Write it up! I'd love to hear about it.

    A mommy's poem ( part I and part II)

    Part 1

    When he was born his skin was soft and pink.
    I held him in my arms but never to think.
    The days that lay ahead weren't what I planned,
    They told me he was dying and had but one chance.
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    They said if he were to get a call, a special gift,
    He would live the life we’d always wished.
    The months went by and I watched him fail
    On my knees I began to wail !!

    This little angel giggled through the day
    I was so grateful he never felt our pain.
    The days were worse he began to suffer.
    His days were hard but the nights were rougher.
    His skin once pink had now turned yellow
    I won’t forget the nights that followed.

    A mommy’s worst fears were coming true
    He was dying in my arms and nothing I could do.
    When my baby became so close to death,
    I know he felt the angel’s breath.
    My special son so close to Heaven
    Now the phone rings and hope has risen!

    A child has died but gave us a gift,
    My son will now know what it is like to live.

    ***Dedicated to Aiden’s donor family. Thank you for my son.


    Part II (written after his transplant and after the struggles)

    His little legs run as fast as they can carry.
    "OH MOMMY! Come see a bug so hairy!"
    He sings his songs and knows his numbers
    He laughs and giggles; quite the performer.

    The sick days are few, the good days are here
    What was that feeling? Wasn’t it fear?
    Pain and sadness were my old friends
    But I won’t visit them, ever again!

    I spend my days learning to talk
    To doggies, fishies and all that walks.
    I have learned more lessons than I ever thought could
    Who’d figured my teacher was 2 years old.

    Faith in God and family and friends
    A gift I was given time and again.

    "Now chase me Mommy lets watch YOU run!"
    Words I prayed for, for so long.
    Once was a time where it was not so good
    When all my time on Earth just stood.
    But my secret I will keep from him,
    It is not his problem or burden.
    I want no pain for him to bear.
    Let him play and have no cares.

    I dreamt of a healthy little boy
    And God gave me, my child, my joy.
    I have to learn to keep up with him
    Before I know it the race he’ll win.

    "Run Faster Mommy! C’mon Let’s GO!
    Clap you hands, dance and laugh like so."
    Some family out there chose to give,
    Dreams came true, I watch him love to live.

    Monday, February 07, 2005

    Being Noah's Mom

    If you had asked me 10 years ago, where I would be today, I never would guessed that I would be where I am. I didn't realize then that God's plans for my life were very different from my own. While God was creating plans, I was dreaming of big things - being a singer in a show on a Broadway, a penthouse apartment in NY, taking trips to Paris, I wanted it all!
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    I don't sing on Broadway - I sing to the most precious (and spoiled) 8 year old, my son - Noah. I don't live in a penthouse apartment, but a house with a wheelchair ramp. And I've never been to Paris - but I have been to Disney World and countless other theme parks! But, funny thing is - I think I might have it all.

    I was never prepared to be the parent of a child with special needs, but when Noah's diagnosis came, I faced it head on, as I usually do with things in my life. Noah has cerebral palsy and epilepsy. It's hard to believe that one diagnosis - 5 minutes in our lives - would change the course of our lives totally. But it has.

    It's taken me down a different road, a different path, on a trip I never dreamed of! And at times the road is bumpy, but with my family, friends, and God, we make it through!

    Sure, there are days I wish I was shopping in Paris or singing on a stage but when I look at Noah and he smiles back with that huge grin, those big eyes, and that incredible, unconditional love, I know I am right where I am supposed to be!

    Not Your Everyday Miracle

    Our first guest essay is from Robyn H.

    On the night Emma was born, I read an Anne Lamott story called “Barn Raising” about a family dealing with their daughter’s illness. I read this excellent, heart-breaking story and then I said a prayer, “Thank you God for my family. Thank you for another healthy baby. Thank you for knowing there is no way I could handle an illness like cystic fibrosis. Amen!”

    If my life was a movie, right then there would have been the kind of music that tells the audience that this is foreshadowing.
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    “Does she seem a little jaundiced?” I ask Phil and the nurses. No, not really they say. But the young nursing assistant who weighs her that night, says “yes” she does indeed seem a little jaundiced.

    Love Your Liver- A Workbook for Children



    I get this workbook with a smiling cartoon liver to help Jake understand what is wrong with his sister. It answers some of his questions:
    Jake: “Why does Emma have a special tube for food?”
    Workbook: "The liver helps your body digest food.”
    But not others:
    Jake: “What does God’s liver look like?”
    Workbook: (nothing)
    Jake: “Why did God make Emma sick?”
    Workbook: (nothing)

    I think of the workbook when I explain things to friends:
    “So why does Emma have blood in her diaper?” asks curious friend.
    I answer, “Well the liver has many functions,” (“over 500 jobs to do” page 6) “and one of them is to help with clotting” (The liver helps stop cuts from bleeding”, page 9).
    “So how are you doing?” asks curious friend (the workbook has nothing).

    Welcome to California



    The night Emma and I left Phoenix Children’s Hospital to go to UCLA and wait for a new liver, our nurses, patient care tech’s and favorite housekeepers all came in to chat and joke and say goodbye. In all the confusion, I still don’t know which nurse was assigned to us that night. When we left with the transport guys, the staff lined up in the hall to wave goodbye.

    A medical flight takes us to UCLA. We are taken to our room on the pediatric floor. It’s midnight. A patient and mom are in the window bed, the good bed. The pretty but serious nurse comes in (I’ll call her “Nurse”). The sleepy resident follows. Nurse does Emma’s physical assessment and hands me the admitting form. She asks questions and when my answers don’t meet her approval, she glances over at the yawning resident and arches an eyebrow or two. There may have been eye rolling. The resident finishes up and leaves.

    “Do you have her TPN ready?” I ask.

    TPN is IV nutrition, total parenteral nutrition. Emma’s liver failure has progressed to the point that she only takes two ounces of horrible formula each day by mouth, and the rest of nutrients through a tube in her chest. My hospital faxed the orders over, twice.

    “No, we’ll just run fluids in the morning,” says Nurse

    Nurse shows me the call button, the bathroom we are not allowed to use and the tiny closet for my things. There are no phone calls after 9 pm. She shows me the chair bed, “But,” she says, “there really isn’t enough room in here for it.”

    At this point I say, “Hey, maybe you’d feel better if I just took off. I’ll be on the next flight back to Phoenix. Take good care of my dying baby, ok?”

    Actually I said nothing. She looks at me for a long time, and then sighs, “I guess we can put it in front of the bathroom, since you won’t be using that anyway..”

    The chair bed is positioned so that every time the door to the room opens, the bright light from the hallway assaults me. I can’t turn in any direction to avoid it.

    Emma starts to fuss. I ring for Nurse.

    “Can I have one ounce of alimentum, warmed up a bit, please?”

    “The doctor has written NPO,” she tells me.

    NPO means nothing by mouth. I know when I am being tested. Sometimes a doctor or (usually) a nurse will use some medical acronym or polysyllabic term to see if I’ll ask them to please, for the love of God, enlighten me with your wisdom and tell me what that means. I never blink. I know the lingo.

    “Can you ask him again,” I plead, “she needs it to get to sleep.”

    She leaves. I bring the now frantic Emma into the chair-bed with me. There are many problems with liver failure. Since she is 9 months old, she cannot tell me if she is having the headaches or body pain. Sleeping next to me sometimes soothes her. Nurse comes back, too quickly to have asked the resident.

    “Sorry, it’s hospital policy, she can’t sleep with you. And the doctor says no formula.”

    “Well then, “ I clench my jaw to keep my voice from breaking like it does when I’m angry, “she’ll just scream herself to sleep.”

    “What about a pacifier?”

    “She hates them, she sucks her thumb.”

    Nurse leaves and comes back with a pacifier.

    “It’s vanilla flavored.”

    “She will spit it at you.”

    I wished I could spit at her too. Nurse leaves.

    I lay Emma in her bed. She howls for 10 minutes. I leave and get a cup of ice water at the machine down the hall... Standing at her bedside, glancing furtively over my shoulder, I feed her tiny chips of ice. She sucks greedily at my fingers. Someone comes into the dark room, I stand still. Emma whimpers and smacks her lips for more. The person leaves, I resume the illicit feeding. Once she settles down, I lie on the chair-bed and cry and pray myself to sleep.

    I am asleep for an hour when blinding hall light awakens me. Nurse shakes my shoulder, “Just so you know there are pay-phones down the hall.”

    I roll over, my face to the light in the hall, my back to Nurse. She leaves. This exchange wakes up Emma. I give her more of the secret ice chips. We fall asleep and I have one of those dreams that don’t feel like dreams. The other moms on the floor come into my room.

    “Can we talk to you?” they ask, “We hear you’ve had a problem with Nurse. You know she’s really a lovely person, California nurse of the year. You’ve hurt her with your rudeness. Could you just try and be nice?”

    I try to defend myself, “Everyone at our own hospital loved us, loved me. We were no trouble at all. They lined the halls to wish us well…”

    The other moms smile sadly and shake their heads.

    I wake up early. Someone is in the room. She whispers. Whispers! A great nurse is one who whispers when there are sleeping parties present. She is Maria. Emma stirs. Would I like her to hold Emma while I take a shower and get breakfast? The night is over , Nurse is gone.

    Later that day the silent roommate is discharged and I get the window bed. We get a new roommate. Jade had her transplant four months before, she is here for a blip in her liver numbers. Her mother, Diana, is beautiful and funny. Our nurses are good, great even. Doctors, social workers, transplant coordinators visit our room. We laugh about everything.

    A Picture’s Worth



    You should see the pictures from that day. The first one I would show you is just her- sullen, swollen cheeks (jowl’s one nurse called them), dull, yellow eyes and skin shiny and orange. Not just jaundiced but Tropicana orange. “Is something wrong with the camera?” you would ask. And I would give you the second picture. She is sitting on a nurse’s lap, same baby, but now you would see the contrast. The pale blonde nurse and Emma. And you’d gasp. Maybe I’d point out the little blood marks all over her face where she scratched herself raw.

    On Sunday morning Phil, Jake and I went to the Santa Monica Pier. There wasn’t much to do in the ICU, especially for a 5-year-old. The guys were driving to Phoenix that afternoon. So we went to the beach.

    I could show you those pictures too. Standing and smiling in front of the Pacific Ocean. Me smiling too much for Jake in the picture he takes of me at the end of the pier. Phil won Jake a big floppy yellow dog at the amusement park. “It’s the color of your sister,” we helplessly tease. We had gotten good at this kind of joke, calling Emma our “little golden girl”. In these pictures it looks like we want to shout, “WE ARE A VERY HAPPY FAMILY!!”

    There is no picture of Phil getting the ok from his boss to stay one more day. Likewise, there’s no picture of the surprise on our faces when the resident asks us when we come up to the ICU, “if the surgeon had been to see us yet…maybe there’s a liver for Emma.”

    If we had used our camera, we could fill a photo album with pictures of what happened next. Maybe video would be better. The flurry and hurry and waiting. Finding someone to keep Jake. The residents, fellows and attendings that come to tell us, maybe it is true, maybe there was a liver for Emma. Phil on the 405 after dropping off Jake with a friend. (Almost certainly best not to have evidence of the laws broken and tears shed just trying to get back to us on that stagnant freeway).

    There are no pictures of Emma vomiting bright red blood all over me as we waited that afternoon. Probably better that way. Who needs to see it? The shock in my face as I pray this liver can’t be a false alarm, please God I can’t take this. Nurses and residents scurrying around. One puts his arm around my shoulders. And Emma vomits again. Yes, better that we have no pictures of that.

    And nothing of a mourning donor family, spirits weary, who say “give” on this, their most awful day.

    The next pictures would have been boring. Phone calls made, hugs shared, prayers said. People saying “congratulations” like we won the lottery. Dinner was good (Thai basil noodles), but hardly worth the film. The line of people across the street from the restaurant waiting to see “the Matrix”. People walking around like it was just Sunday night.

    You might smile politely at the next ones. Emma feeling suddenly good for no apparent reason as they take her to the Operating Room at (finally!) 3 am. Us sleeping fitfully on makeshift beds on chairs in the waiting room/ lobby/entrance hall. The young Japanese in the chairs across from us. Their incessant happy patter giving me white noise to sleep by. Their heavily accented English calling our name as the lobby phone rings with news from the OR. More nonexistent snapshots of:

           
    • the first call- the old (dirty, scarred, cirrhotic) liver is out
           
    • the second call- the new (pink, lovely) liver is in
           
    • the third call – she is being sewn up, the surgeon will be out to see us shortly.


    We surely do not have pictures of what came next. A pale (!!) yellow baby in a bed in the ICU. Tubes aplenty. Or a picture of what I saw that night. I’m leaving, it’s late, I need to see Phil and Jake now. Emma is asleep, monitored, intubated. I lean in, her eye flashes open for one microsecond. I see white. I am floating above the ground, a magical picture. No, a trick of the camera you would say.

    Those pictures I mentioned? The charge nurse took those in the ICU that morning, because it was Mother’s Day. I’m not in the pictures because I’m at the beach. They are our favorite pictures now.

    Saturday, February 05, 2005

    paranoia, justified

    It can be hard to relax when you have a child with major medical issues. Even something as innocuous as a trip to the grocery store can be nerve-wracking at this time of the year, as I try to steer the grocery cart out of the path of every sneezer, cougher, and sniffler walking the aisles with us. I remember my own days of thinking nothing of going out in public with a cold, so I understand why those walking germ factories are rubbing elbows with us, but, as the parent of an immunocompromised child, I have to say it drives me nuts.
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    Even safely ensconced in our own home, with the faint whiff of bleach cleaner in the air as testament to the daily anti-germ campaign, I find things to set off new worries. For example, there's our nightly ritual of unwinding with a cup of herbal tea on the couch, watching some bad show on TV. When I was in the hospital with Annika, Joerg used to call me a masochist for watching ER. He was right, really. What's the entertainment value when the issues being dramatized are poised to become your next new paranoid worry? Recently, I switched channels to watch the season premiere of Medical Investigation. The opening scene showed a baby dying as doctors worked frantically over its tiny body. "OK, that's it for me. Good night!" And with that Joerg was out of there so fast I didn't even have time to respond. But I stayed on to the bitter end, masochist that I am. At one point, the doctors thought that the babies were dying from some vicious strain of bacteria. Half of the final list was bacteria that Annika had been infected with pre-transplant. Now, why in the world would I keep watching to see if the babies would win their battle with the bacteria, just to remind myself how narrowly the battle was won in Annika's case? In the end, it turned out that the infections were actually viral, anyway, but it was still a weird sort of freak-out moment when I recognized all the names and acronyms being thrown out, and mentally added my own favorite bacteria, as well as shouting out suggestions of alternative antibiotic therapies for the "doctors" to try. So I really shouldn't watch these shows, but somehow I just can't break free from their tractor beam. Also, I really shouldn't watch Medical Investigation because, geez, the writing is terrible, and all that eye rolling might be making me more near-sighted.

    And it's not just TV. We are also magazine junkies. The New Yorker and The Atlantic Monthly are my usual fixes, and some issues are chock full of articles that get my worry gene going. Last month, The New Yorker ran an article, The Pediatric Gap, discussing the abysmal lack of pediatric testing of drugs commonly given to children. The problem is that drugs may act completely differently on young patients than they do on adults, due to major differences in the way that an immature system deals with the drug. And yet very few of these drugs are actually tested on kids before being released for general use, leading to some very scary outcomes, even in generally healthy kids. Of course, reading the article, I was ticking off the number of drugs mentioned as potentially dangerous for kids that Annika had had in her four short years. The grand total was 5, including 2 sedatives that she had just been given in the two preceding days. And the drugs listed in the article were not those that we had been told might be dangerous for her, and there were certainly plenty that we were warned could have serious, adverse side-effects. The quotable quote from the article is from Maureen Strafford, a Boston pediatric anesthesiologist and cardiologist, “It’s what I call the reverse lifeboat phenomenon...In medicine, children come last.”

    In general, I would say that Dr. Strafford's quote is bit too general (perhaps there was more context that was not included in the article?). We have found that, for healthcare personnel anyway, children often come first. But this is evidently not the case in the world of pharmaceutical companies and medical equipment manufacturers. The image of pharmaceutical companies has taken quite a hit recently in the media. And it's not just the serious news reporting on massive drug company profits while prescription drug costs pauperize many elderly patients. E.R. (my personal barometer for medical issues) recently featured an episode in which the drug companies were essentially serving as corporate johns to doctors who were paid to prescribe the company’s expensive drugs, without mentioning possibly nasty side-effects (leading to the patient's loss of a transplanted kidney--oh, the vast array of scenarios to keep me awake at night).

    Yet I found myself sympathizing a bit with the pharmaceutical bad guys because of this article, Don't Do the Math a few weeks later, pointing out that companies are often better off not doing risk analysis when it comes to jury damage awards. James Surowiecki
    interviewed Harvard law professor W. Kip Viscusi, "[who] has shown that people are inclined to award heftier punitive damages against a company that had performed a risk analysis before selling a product than a company that didn’t bother to. Even if the company puts a very high value on each life, the fact that it has weighed costs against benefits is, in itself, reprehensible." Of course, one would wish that companies would simply make better decisions when it comes to interpreting risk-benefit ratios. But it also seems that the article conflates two different ideas of "benefit." In the G.M. case, in which engineers figured the dollar cost of moving the gas tank versus the dollar cost projected for settling wrongful death lawsuits, the benefit was quite baldly company profit. In the recent case of Vioxx, the benefit-risk analysis counts as "benefit" a significant improvement in the quality of life for patients. But, yes, company profits must be in that calculation somewhere as a benefit as well.

    If simple risk-benefit analysis can be so damning overall, just imagine how hard companies would get hit if there were the vaguest hint of knowing that children were at risk. The path of blissful ignorance becomes much more understandable.

    There is so much good in our system of healthcare, but so much that just so plainly needs to be fixed. The question is, can it be fixed in a way that does not permanently hobble the parts that make our healthcare so effective?

    While not contemplating how to fix the entire healthcare system in our country, I think I need to at least stop watching any TV show that has characters shouting "Stat!" at one another.

    Yesternight, A Poem for Drew

    ____________________

    The night before this was yesternight,
    or so it was named by Drew.
    A red-haired sprite, feisty as fire and just the whisper of two.
    She came to this earth to let us know,
    never forget to go, go, go.
    and "Never... never... never..." stop.
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    Save one thing...
    smell the flowers, the showers bring.
    Always stop. Always smell,
    and don't forget to water well.

    "I don't! I won't!" I wonder still,
    how one so small keeps such strong will.
    Every hour and every day,
    she battles and bursts to get her way.

    As the night hour falls,
    one might think,
    she'd tire and wilt, wee shoulders slink,
    yet the battle endures.

    Yelling loudly and louder at the sandy man,
    singing "twinkle you stars" and "shine if you can."
    Demanding and standing,
    defiant to sleep...

    Finally... at last.....
    to dream land she goes,
    from cloud to cloud,
    over rivers of rainbows.

    Rocked by the moon,
    tucked into the sky,
    peace at last,
    nighty-night, Butterfly.

    Quiet, gently tip toes in,
    fearing to wake, to begin again.
    Her eyes now shut, a soft repose.
    But even at rest, she grows, she glows.

    In my prayers are praises,
    for her fight and fire.
    God's gift to Drew,
    to live, to inspire

    Shine little one,
    Fight the fight.
    All and every day,
    and yesternight.

    -Mika Denny
    July 9, 2002

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