I Miss my Baby

Having family who lives in the same town you do is always a plus. OK, maybe not ALWAYS, but it certainly seems to have its benefits: built in baby-sitters, free meals, a peaceful night alone with the hubby, etc. And this week my parents and my in-laws have proved especially useful.
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As a parent of a now-immune suppressed child, I have learned the danger of germs. You sneezed? Please go wash your hand in bleach. You coughed? There’s a battery-acid rinse in store for you. Fever? Let’s not even go there.

And then I did. Sunday night while “Eastering” at my in-laws, I noticed that I felt a little warm. Out comes the trusty thermometer I carry everywhere and bam: 102.4. WHAT? Two things: I apparently didn’t learn the rule that Mommy’s don’t get sick; and two, 102.4? Really? I take my temperature again. The thermometer must have been wrong the first time because the next six times I take my temperature, the thermometer reads 102.9. NICE. I down half a bottle of Tylenol, and pray that it will go away. Meanwhile, what do I do with Anthony? He can’t be around me even though he’s been thoroughly exposed (hey, I didn’t feel THAT bad when we were wrestling on the floor ten minutes ago!). My mother-in-law has a panic attack (literally) thinking Anthony is going to get whatever rare disease I must have and will have to have another liver transplant.

Hey, what about the woman who has the fever? No sympathy for her? Hmph. I’m shipped home in the care of my husband who is shooting me dirty looks for getting a fever in the first place.

Monday I stay home from work and sleep all day. Tuesday I’m no better so I head to the doctor. I have....drum roll please...the FLU. Shit. I’ve NEVER had the flu. Never. And I got the flu shot in the fall. Of course, I know I got a different strain of the flu than what I got in that shot. I’m still pissed.

Hubby comes home from work Tuesday night burning up with fever. He tops out at 103.3. I dose him up with Tylenol and the script my doctor gave me. We sleep and sleep and sleep.

I have now been fever free for twenty-four hours and will go back to work tomorrow. Hubby has been fever free all day. Yahoo.

Every time I call to check on Anthony, I hear “He’s fine. He’s reading a book with Grandpa/Paw Paw” (depending on whose house he’s at). So they put the phone to his ear and I say, “Hi baby, it’s Mama!” and back through the phone comes, “Mama?” and then the sobbing commences. On both sides of the phone. He doesn’t SEEM to be fine, he’s crying for his Mama! Oh, my heart is breaking. And all I can think about is, “I want my baby!” Not, “Thank God we have family who can take him so he won’t get sick.”

I miss Anthony. I miss the little snuggly hug he gives me before bed each night. I miss the big grin he gives me when I go to get him out of his crib in the morning. I miss those fat little legs running around the house while I chase him. I want my baby back!

Mama Knows

A little poem I wrote....


You may not talk like other people,
But Mama hears you.
You may not walk like other people,
But Mama sees you move.
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You may not learn like other people,
But Mama understands your hunger for learning.
You may not cry like other people,
But Mama knows you hurt.
You may not be afraid like other people,
But Mama knows your fears.
As your Mama,
I know what you're trying to tell me
When you "talk" or sign.
I know you're walking in your own way
When you hold onto my fingers.
I know you're learning all I teach you.
When you're sitting on my lap at the computer or reading a book with me,
I know it hurts you,
When others tease you.

As your Mama, I know,
You're not afraid of monsters or the dark,
Cause your fears are bigger.
I know you're not like everyone else.
You're different and special,
I know you haven’t lost your innocence yet,
wise beyond your years in some ways.
I know you can make people laugh and smile
Without a single word.

As your Mama, I know,
It’s not always going to be easy for you
I know you will need me to
Cry for you when you can’t cry for yourself.
And I know you will need me to hold your hand along the way
If you're frightened.
I don't know how I know all this,
But as your Mama I just know.

coming to terms

Some rambling thoughts. Feel free to ramble yourself.

I love the wisdom of the piece "Welcome to Holland" by Emily Perl Kingsley. But some days I have trouble believing the message of this wonderful parable, the assertion that "Holland" is just a different place than "Italy." Not only not a worse place to be, but even a place with its own attractions.
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How can it not be worse that every illness that comes her way could put her in the hospital? And usually does? How can it not be worse that she has to take medicine 5 times a day with listed side-effects that leave me queasy? How can it not be worse that after two transplants, her liver is still a major health issue? How can it not be worse that transplant #3 looms threateningly at some uncertain future point? How can it not be worse that she has to undergo CTs every 3 months to monitor the lymph nodes that have massed like little soldiers throughout her neck and abdomen, ready to rush forward into a full blown lymphoma battle at some secret signal from her confused immune system? How can that not be worse than normal?

And be sure here, that my question is not "How could it be worse?" We have seen that the spectrum of childhood suffering is alarmingly broad, and I know my daughter, Annika, has not experienced its very lowest points. My question is, how could this life she's been forced into not be worse than a normal life? A life without major medical issues advertised on a little silver bracelet worn around her tiny wrist?

I confess I have really been trying to work this through, mulling it like a little puzzle. Like a philosophical essay that I've read and suspect that I really like, but secretly don't really understand. How do you finally decide that you are just in "a different place," but stop regretting the change of flight plans?

The answer that is suggested in the Holland parable is that you have to begin to notice the great things that are peculiar to Holland--the tulips, the windmills, the Rembrandts. But, really, this is easier done in the metaphorical case of an unplanned vacation to a fabulous European country. In Holland, you can point to physical things and say to yourself, "This is here. This is good. And it is not in Italy." But with my daughter, can't I just imagine her healthy? And wouldn't she be the same sweet, loveable girl? Just with fewer scars? And fewer tears? Wouldn't she be happier?

But maybe she wouldn't be--neither happier, nor the exact same girl. It's like trying to imagine how you would be if you were rich. The fantasy, of course, being that you would be the same person with the same values, only with a lot fewer worries. I recently spotted a poem by A.R. Ammons in the backlog of my New Yorker magazines that opened with, "The poverty of having everything is wanting nothing." My first reaction being, "Whatever. Oh, for those problems." I nevertheless read the poem through, following along its evocation of a vacuous wraith wandering the Mall of America listlessly. It seems a tired idea to me that an improvement in your situation will also lead inevitably to a detriment elsewhere. Or the flip side of this kind of thinking--Nietzsche's overblown "Whatever does not kill me makes me stronger."

But, still, if our firstborn would have entered the world with not only 10 fingers and toes, but also a working liver, would we have had the same little girl? Is my yearning to have an Annika who was never a little jaundice-yellow baby, who never toyed with the I.V.s in her arms, or wore a stethoscope like a fashion headband, or cried when her nurses sang "Happy Birthday," or pointed to the huge scar on her belly and murmured, "This is my life, right here..." completely unrealistic? If we subtracted those things, and all the other million little things about our girl that are the direct result of her experiences as a child born with a dying liver, would we no longer have Our Annika? Would she be a completely different child, without the experiences she has gone through? If that's the conclusion I would have to reach, then I could never again wish for things to have been different. Our Annika is the light of our mornings and the warmth of our summers.

But suppose that we had never even gotten to know and love our real-life Annika, and had instead given birth to the liver-disease-free Annika, the Italian Annika. Of course, we would have loved that Annika, too. But would our lives have then been easier? Better, even? Or are there aspects of this life in Holland, enjoyable ones, that we would never have experienced in Italy? Do we enjoy our good days just a bit more? Take the healthy and happy days a bit less for granted? Does Annika have some spark, the forward momentum of wanting, that she would otherwise lack? Does the fact that our daughter's life was saved by strangers in the midst of their own tragedy connect us a bit more closely to all the unknown human beings we pass in the world each day?

In the end, I think the only way to take "Welcome to Holland" is not so much as a description of how our lives actually are, as an inspiration for how we should live them. Without regret for how we might have been, and actively searching out the landmarks and accomplishments that make life here worthwhile, and perhaps even sometimes enviable.

Some Days

Some days are better than other days.
Some days Ellie talks when the speech therapist is here.
Some days a mom of a similarly-aged child says, "Jack just started doing that too!"
Some days Ellie shows me that she understands something far better than I thought she did.

Other days are harder.
Other days I realize that she's not going to grow out of this.
Other days I realize that this battle is just beginning, and we're still at the easy part.
Other days I worry about the future.

Every day she melts my heart with her smile, anyway.

Always Have Hope

Poem written by rojo for daughter with rare, genetic bone disease (1 in 2 million). The feelings in this poem seem to alway be present..somewhere within myself. However, my life with a child who has a chronic disease (no treatment or cure yet) can not only get a bit murky and very dark but overwhelming and despairing. Hope is what keeps me going. Blessings
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Always Have Hope

When you struggle for answers, and are trying to cope,
Believe in your heart...always have hope.
Hope takes you farther, is ready to go,
Hope holds the vision,when others say no.
Hope is the river; strong, full and deep,
Hope knows no limits, no mountain too steep
Hope for a treatment, hope for a cure,
Believe in a miracle, holy and pure.
Hope hangs on, believes in the best,
Hope is a journey, each minute a test.
When your spirit is weakened and you're trying to cope,
Believe in your heart..always have hope!


Copyright ©2000 JAC

Superhero

Another guest essay from Robyn H. I promise the last two sentences will get you.

For more than a year Jacob wore a cape. His favorite was an old, pink receiving blanket. We would stretch it so that it could drag along the ground like a real Jedi. He also had a gingham blue apron and the red satin cape from his superman pajamas. When these were lost or in the wash he would ask us to tuck anything, an old t-shirt, a dish towel into the neck of his shirt. Most often he was a Jedi, a sort of intergalactic superhero. A wedding invitation and a magazine subscription addressed to Jedi Master Jacob made it official.
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He saved our house, the city, the planet on an everyday basis. Assorted villains paraded through our bedrooms and our backyard.
“Where’d they go?” he’d yell, running into the kitchen as I made dinner.
“Go get them! They’re behind the couch!” I’d say. And he’d run off to do battle. They never had a chance.

During this caped time, my parents were over for dinner,it was Jacob’s 3rd birthday. As we ate, Jacob started talking about the baby. What baby? The baby girl, the baby sister, he answered. We looked at each other, perplexed. What no one knew (but me of course) was that there was a pregnancy test in my purse that I was going to take the next morning.

Jake was a superhero nearly every waking minute that pregnant year. He’d wear a cape to the babysitter, the Y, the grocery store. Strangers would smile as we passed. Remembering another little guy who thought he could save the world?

Jake was about 3 and a half when his sister was born. As I’ve recounted to countless medical personnel- she was full term after a normal pregnancy, slightly jaundiced within 2 days after birth. Tests showed elevated liver enzymes, but they allowed us to bring her home.

Jake insisted on showing her around the nursery. (Note: Pale green with giant yellow polka dots is NOT a great color scheme for the infant with persistent jaundice).
“And here’s the crib, your wall, your place for clothes,” he lisped like a little Elmer Fudd. Emma watched in that big eyed newborn stare. As if to say, “What the hell?”

From almost the first night, Jacob would sneak in to Emma’s room and curl up on the floor next to her crib. I think he was overwhelmed by love and felt an obligation from moment one to protect her. A 3 year old superhero knows full well the risks out here in the big world. In your very own house there are bad guys and villains and monsters . The last thing he was going to do was let this little nugget, a tiny morsel who couldn’t even talk or sit up (let alone wield a lightsaber or throw a punch) sleep undefended. After several weeks of kicking him in the head, or stepping on his sprawled legs in the middle of the night we convinced him to sleep in the extra bed not 4 feet from her crib- a short enough distance to leap upon any evildoer unfortunate enough to try and hurt his sister.

Emma had Biliary Atresia (BA) one of several dozen rare childhood liver diseases, the commonest of the uncommonest. At 6 weeks she had the surgery that can sometimes buy BA children time before they need a transplant. But like all chronic liver diseases (really all diseases) she got sick a lot and had complications and our lives were no fun for a while, to put it mildly.

Jacob and I would lie in his bed at night, after teeth brushing and storytelling and and we would talk. We would review his day and talk about God, about Star Wars and about sister. One night, not long after a 2 week hospital stay that ended on Christmas Eve, Jacob suggested we hang a sign on our door, to keep people away, both strangers and friends.
“Oh honey,” I said, proud of him for being so protective, “People didn’t make Emma sick…”
“No, mommy,” he interrupted, “So I don’t get anyone else sick like I got Emma sick.”
Right about there is where you can hear my heart break. I started crying. “No, no, no honey,” I stammered, “You aren’t the one who made Emma sick. Emma was born sick. Her liver makes her sick. I’ll show you tomorrow where her liver is . Daddy will tell you.”
And I got Phil to come in and tell him in no uncertain terms that it was true. I told Jake we would ask Emma’s GI, a kind and funny man, to tell him too. Imagine it, here you are a superhero and not only can’t you save your own sister, but you believe you’re the one who got her sick in the first place.

Emma had her transplant. At church now, we get asked about her often. Jacob stands patiently by while they ask questions about his baby sister. Yes, she’s doing well. Yes, prayers were answered. We are so, so thankful for her. And I want to add, “And look here. Here’s my son. Every bit as wonderful. A little man that we thank God for just as much.” Because in his own way he went through as much as his sister, maybe more. Because he will remember this long, awful year and she gets to forget.

Jake is the one his sister smiled for the most, even when she was too sick to smile for anyone else. Emma is the one who could make her brother smile in return. Jake has never given her one bitter medicine, never held her down to insert a nasogastric tube, never held her kicking feet while some damned (Emma’s word, not mine) person in scrubs tries for the umpteenth time to draw blood or insert an IV because the last one blew and we still have 3 days of antibiotics left. He never peeled the dressing off her raw, red broviac site. He never handed her over to a bunch of strangers who were going to make her feel horrible again. His only 2 jobs as he saw it and still does were to make her happy and watch over her. These are difficult jobs for anybody looking after a baby, but seemed especially daunting with Emma. Jacob, I’m sure if you asked him would tell you that not only was he up to the task, he was the one who could do it best.

Sometimes I hear people describing their special child, their miracle baby, their hell-and-back story. I think I know what they’re talking about. Their child withstood countless events- physical and psychological- that most adults would run screaming from. I can empathize somewhat, I hope, with their pain. And I want to tell them about a certain miracle in my house. A boy who is a superhero, poorly disguised.

The Amazing Card Drive

This post was inspired by some of Moreena’s suggestions! She asked what one of the most amazing things someone had done for us……

In our case, it wasn’t just one someone, but many someone’s! Two years ago, Noah, was about to have a major surgery to lengthen his heel cords and to put a steel plate in hips. This was going to be a long surgery with a long recovery. He would be in a body cast for a few weeks and then half leg casts for a few weeks and would have to be hospitalized multiple times for the surgery and rehab. All of this was taking place right before the holiday seasons! (Thanksgiving and Christmas)
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One of my nieces, Holly (she was 17 at the time), was trying to think of something to do for Noah to show him how many people cared about him. He loves books and mail- so she came up with the idea of doing a card drive - having people mail Noah cards. We wanted to promote this on his website so I decided to open a PO Box. Holly asked me to help make up a flyer to hand out. She also emailed the local paper about it to see if they would run something about it. Shortly after she emailed the paper, a reporter called me and came out and did an interview and took pictures. They ran the article on a Monday - Noah’s surgery was on Thursday of the same week. On her way to the hospital, Holly stopped by the post office and picked up the cards. When she got to the hospital, Noah was already in the operating room and we were all sitting in the waiting room. She walked in with a HUGE stack of cards - 318 to cards to be exact! Our family sat in the waiting room and each took turns and opened the cards and read the aloud. I was so overwhelmed! Noah received so many cards with well wishes, prayers, stickers, coloring books, and even some money! The cards that touched me the most were those from family members of special needs children. The cards that Noah loved the most were the ones from other children, hand drawn cards from local elementary school classes.

The cards kept pouring in and a few days later, the reporter came to the hospital and did a follow up piece. When it was over, Noah ended up with over 1,000 cards from 36 states!

Every person who sent a card, my niece Holly, the reporter, and everyone involved with the card drive did something amazing for Noah and our family. We were so touched that there were that many people out there in the world that would take 5 minutes and 37 cents to put a smile on a little boy’s face!

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