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That gave me the chills to read - what a nightmare to live through. You seem to be an old pro at this now. I know it can never be easy. I think some reople might not know how lucky they are when they get a real healthy baby.

allison Tannery

Oh I cannot even imagine living with the constant fear/angst/unknowns of your child being ill. It must be about the most out of control feeling in the world. Sending a little empathy your way...And I get all bent when I can't get my den picked up without the children continuing to drag stuff out. I've "heard" your name all o' the cyberplace, and will be back. Just had to stop by, lend a little lovin after reading that post, and also say that yes, we had pom poms, and the embroidered jeans?!? Rockin'. My mom wouldn't let me have anything so trendy as shoelaces dangling from my bum, I'm so jealous...I had a couple of monogramed sweaters and grosgrain ribbon ties for my buttondowns, though.


I know that I sure as heck never knew what a good thing I had. I was too worried about being single and nobody loving me to stop, look down into my arms, and realize what incredible love was there. Maya's an amazing kid. But sometimes I feel incredible guilt that I never noticed just how great she is until life slapped me in the face with new realities.

Am I really famous? So this is what it's like. Huh, not that different.
Don't be fooled by my "mother of a chonically sick kid" status. A saint, I'm not. I still get bent when the kids leave a trail of crap behind my every effort. Ever watch Monsters Inc. I feel like that slug janitor monster who's always mopping up after himself.
My neighbors have this magnet that says,"Cleaning while you have kids, is like shoveling snow when it's snowing." I told her it should really read, "Cleaning while you have kids, is like being repeatedly hit over the head with a shovel while you're looking at the pretty snow."

On another note, what a drag your mom wouldn't let you have super white trash ghetto Daisy Dukes with embroidered skates and rainbow laces. What was she thinking? But then again, my mom told me that monogrammed sweaters weren't worth the money. There went all my dreams of growing up to work in a brewery with my friend Shirley. Moms!


I cannot even begin to imagine the strength and energy it took to comprehend the diagnosis and to go on like you do. I am amazed by everything that your family does to ensure Kajsa is receiving the best care.

Thank you for sharing your story with us.


Oh Rowan, my heart just aches for the pain you were going through during that initial diagnosis. I hope you keep writing this down--and I'll link to you--your story can touch so many. Hugs to you and that precious tiny girl, who is growing not-so-tiny now!


I'm a true believer in life being about the lessons. I figure if I get it right, I don't need to worry about it later. I guess the good thing about this kind of stuff, is finding out your own merit. I have so much more strength (and sick humor) than I ever knew. That part is kinda cool.

Isn't she getting big? It's amazing to think that she used to fit in Chris' hand.
Yep, that was a hard time. I cried a lot. As I found out that it was manageable...albeit challenging, I cried less. I think you can just get used to anything.
Kinda funny...Kajsa's fairly high energy. They tell me that post-transplant she'll have so much more vim and vigor. Now that is something to worry about. However will I manage? ;)


Of course I don't mind you stealing my idea. Actually, if you look at my sidebar under Anna's liver friends, and click on Natalie, her mom did the same. I am honored that I have influenced others. Your story is very similar to mine. Kajsa is lucky to have you for a mom, and very much adorable! Prayers are always being said for her!


Awesome, so far, Rowan. Because I am a relatively new reader, I can't wait to hear the rest of the story. I guess I kind of knew that you had a child with health problems, but I didn't know the extent and I didn't want to pry.

About my memory, it was a beautiful experience and a lot of people don't understand that. If you think of it in the right frame of mind, while it is sad, it is no less beautiful than birth. I was there when my father passed, too. I got to say good bye at the last moment of his life. How many people can say that? It is one of the most precious things to me.

Thanks for coming by my site today. And you are a little famous.;)


Well that's good. I'll have to go check out Natalie's site. It is somehow quite reassuring to meet other parents in similar situations. And like you have said of me, and I feel of you...I'm finding these people to be absolutely amazing and strong. Thank you for your compliments and well wishes. Please know that I return them.

How blessed to have been able to be present for others as they pass. When Chris' father Paul left us we had the whole family gathered together. It was the end of Father's Day and full of the joy of being able to close old issues and say true farewells.
The link for my memorial of this is here:

I've been a birth doula for 9 years. For this brief time it felt like a room full of death doulas...a loving presence to guide someone into the next existence.
I gather that your experiences were similarly poignant. Thank you for your post. And thank you for your comment.

Jake Silver

wow. that story just... i don't know what i would do or how i would feel. well, yes i do. i'd be worried SICK. agree about "mommy nurses" getting it. they are so sweet. and i freaking LOVE your daughters name! HOW do you pronounce it? and where did it come from? i'm sure you've probably answered the origin question, but i'm a new reader to your blog and i would love to know where the name came from.


Hi Jake!

Glad you love Kajsa's name. So do I. It is a Swedish name. It is pronounced Ki-sah with a long i (eye). From what I've read, the name means daisy, wich was just the clencher for me.

When we were pregnant with Kajsa, Chris and I spent a ton of time trying to figure out a name for her. We actually had another name picked out, but realized at about 8 months that it just didn't feel right.

So we began searching again. We were hoping to find something to honor our family histories. I'm mostly Irish, but most of the names are even more difficult to pronounce than Kajsa -- or they are already more popular than we were looking for.

Chris' family is highly Norwegian, so we began to look into the scandinavian names. When we found Kajsa, we knew it was a good one.

We actually decided upon her name the day before she was born. We did keep Gwyneth as a middle name for her. That way she has a little of the old celtic spirit, too.


Hi, Rowan. That whole link isn't there and I can't get it with what I can copy. Is it possible for you to email me with the link? I would sure love to read it. Thanks.

Here is my email address...
[email protected]


Sorry about that. Here's the full address.

I guess it's a pretty long one. I had to divide it in two. I'll email it to you, too.

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