& Allison have begun this great repeating
post they call
. And it’s proven to be quite interesting. I’m trying to not only remember to write them
myself, but also to read others’. So
tonight when I went over to
, I was amazed to begin reading
Sarah’s account of Anna’s diagnosis with Biliary
. Her story was
so similar to
Kajsa’s that I felt compelled to
document a bit of our own story. I hope
that’s OK with Sarah. I do hate to rip
off ideas. But, Sarah, you just got me
feeling such a sense of melancholic nostalgia.

Oh, where to begin. I
think I’ll start with life before Kajsa…

I was a single mom of Maya when I met my husband Chris. Maya had never seen a doctor in her
life. She was cloth diapered,
non-immunized, co-slept, etc. I would
have even home schooled if I hadn’t been our sole bread winner. By the time Maya was 8, I had gone back to
school to become a massage therapist and was teaching at Seattle Massage
School/Ashmead College. That is where I
met Chris. We became good friends, and
after he graduated, I asked him out. The
rest was history.

One of the things that Chris always loved best about me was
my parenting style. So when we found out
that we were to have a baby, we were elated. We signed up with Baby Diaper Service, took Bradley classes, and found
the best midwife imaginable. Kajsa was
born at home on a warm late spring day. She was full term (although a bit small) and had all her fingers and
toes. We figured the rest was the easy
part. After all, I was an old pro. I’d always remembered the words of Maya
Angelou, “Ain’t no trouble when you’re packin’ for double.”Birthday_with_sisters

Toni, our midwife, came by at day three to the heel
stick. I cried and cried to think of
anyone hurting my baby. It all came back
normal. Kajsa was a bit
underweight. But, we figured all babies
drop at first. When Kajsa was still
dropping at 2 weeks, Toni gave us the name of a very good pediatrician. Dr. Oriel is this neat little guy who reminds
me of Peewee Herman with out the annoying laugh or off beat movie preferences. He had actually taught at Albert Einstein, and has a huge love of babies. We went
to see him. He began to talk to us about
vaccination schedules. We told him that
just was not gonna happen. While he was
not, OK with this he agreed that it was our decision to make, and asked only
that we read his information, as well as the literature that we had based our
decision upon.

Dr. Oriel was also worried about Kajsa’s weight and had me
go to see a lactation specialist to make certain that I was nursing well and
that she didn’t have any problems with sucking. While we were at it, we began checking to see if she was allergic to my
milk. This, I thought was the most
absurd and insulting of notions I’d ever heard. Now I wish with all my heart that this had been the issue. I would have been quite put off, but I would
have eventually gotten over it.Hospital_007

I was pumping around the clock and mixing my milk with
formula at high caloric ratios to try to fatten her up. But she just kept dropping weight. We met Dr. Oriel at his office on the 4th
of July for a weight check. Down,
still. Then he met us there two days
later on a Sunday. He was so befuddled
by our little bird girl. So, he said
that he’d really like to take some blood to rule out a few things. We said alright. We watched as he tried desperately to get blood
from both arms. Finding this to be
extremely difficult, we went downstairs to the lab. The woman there was eventually able to get
some blood from her scalp. The poor girl
was just SO dehydrated.

We went over to Shaun and Chrissy’s old Enumclaw house that
night for a visit and were just settling down to watch Lord of the Rings, when
my phone rang. Dr. Oriel was on the
line. Since he knew how little we valued
Western/Allopathic medicine. He pulled
no punches.

“Rowan, there’s something wrong with Kajsa’s kidneys. We need you to go to MaryBridge Children’s
Hospital. You have time to go home and
pack some clothes for yourself. Do not
go anywhere else. You are in direct
admission. That means they know you are

I hysterically went tearing into the other room where Chris
was playing video games with his friends. I’m not sure that dolphins could have understood me as I tried to relay
what I’d just been told. Chris took the
phone and got directions to MaryBridge.  As we drove back to Auburn,
I just kept wondering if this could all actually be real. I sobbed for
the whole ride and just kept
thinking that they must be horribly, horribly wrong. These things
simply do not happen to me. I vacillated between disbelief and sheer
terror. Chris said nothing and

As I arrived at our house, I couldn’t figure out what to
pack. Should I take clothes for
Kajsa? Would she wear them while we were
there? How many diapers would we
need? Would there be a place to wash
them? This is how much I knew about
hospitals. I grabbed about 500 ounces of
my milk from the freezer as we ran out the door.Hospital_011

We arrived safely (somehow) and were admitted to the seventh
floor. Chris and I filled out what
seemed like sooo much paperwork. (I can
now do this in my sleep.) Chris stayed
in the room as the IV specialists came up to draw more blood. I have an intense fear of needles; so a
wonderful nurse named, LaDawn, took me to a soundproofed treatment room to
figure out the unbelievably industrial looking breast pump. She talked to me about her son. He had some chronic illness. She and her husband had lived on an army base
in Germany when he was diagnosed. Her experiences led
her to change careers to become a pediatric nurse. This story would repeat itself over and over
during our various hospital stays. The
mommy nurses were always my favorites. They just got it. This is who can
provide emotional support like no one else. It is from nurses whose children have had chronic illnesses that I
learned how to be an unbelievable advocate for Kajsa. They are a resource to be valued, and never
overlooked. They are, indeed, the key to
hospital sanity.

The next day we met one of our Nephrologists, Dr. Holloman and Neph Nurse/Case
Manager, Teresa.   Dr. Holloman arrived that afternoon, after we’d
already taken Kajsa down to radiology for an ultrasound of her kidneys. He told me that Kajsa had malformed
kidneys. They knew that they were at the very
least hypoplastic (itsy) but they were also likely dysplastic
(chaotically formed). We found out that
the only way to tell the difference was with a biopsy, and that the treatment
would be the same for both. That was an
easy decision. No biopsy.

What took a while to settle in were the term Chronic Kidney
and Chronic Renal Insufficiency. We couldn’t believe that our daughter’s kidneys were smaller than my
pinky fingernail.Thumb_and_foot


Well that’s about all I
can take of this for right now. So, again
taking my cue from Sarah, I’ll write more about life post diagnosis at another
time. Thanks for lending an ear eye.



13 thoughts on “MONDAY MEMORIES 1-16-06

  1. 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.

  2. 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.

  3. Miriam:
    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!

  4. 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.

  5. 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!

  6. ccw:
    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? 😉

  7. 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!

  8. 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.;)

  9. Sarah:
    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.

  10. 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.

  11. 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.

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