Monday, March 07, 2005


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.
Continue reading...

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.


Blogger Amanda M said...


Very moving story, and the photo just brought it home. Nice touch. Such a little tiny baby in the arms of her big brother. Amazing that he knew about her before you all did...has he ever said how he knew? I loved your last story (about Emma's transplant) and I love this one too because BA really is a whole family experience - it affects us all - and it's so rare that we get to hear the sibling's point of view. Definitely looking forward to more of your stories...have you considered Mothering magazine or others for publishing? As we all know, I am rather obsessed with BA baby stories, and I'd love to see them out in the world more.

9:21 PM  
Anonymous Laurie Jo said...


Your story made me home for me. I could replace Jake's name with my son, Brad's name and Emma's name for my Ashley's name and the story became mine. Brad has also been very protective of Ashley, still is and they are almost 9 and 7 years old. Ashley is Brad's best friend and vise versa. Brad even wrote a story about Ashley when he was in the first grade writing competition and it won Honorable Mention at the County level. He is the bestest big brother ever. (Ashley's words)

It is truly amazing how the older siblings of chronically ill children mature, understand, and love! And oh my what they teach us!

Thanks for sharing your story. I am not a blogger but I frequent Postcards from Holland. I love the stories about all of your special children.

Ashley's mom from CLASS

7:38 PM  
Blogger Key Teacher said...

What a wonderful super hero. I'm so glad I found your blog and this blessing.

11:57 PM  
Blogger angela marie said...

What a beautiful story, thank you for sharing.
There is nothing, nothing like a sibling relationship.

11:57 AM  
Blogger PPB said...

This comment has been removed by a blog administrator.

9:42 PM  
Anonymous Stacy said...

Robyn -

So wonderfully said! I've often thought that Morgan, Tanner's twin sister gets a bum rap sometimes. She hurts, too - mommy & her twin gone for weeks on end - her whole world upside down. And, you hit the nail on the head when you described the love & joy shared between the siblings.

Thank you for this - I needed it desperately!


6:57 PM  

Post a Comment

<< Home