March 15
Today we did some yard work.  The weather is beautiful here in St. Louis. We worked quietly side by side.  I knew we were thinking the same thing....  All of a sudden both of us stopped, we looked at each other and one of us said "this sucks."  Last year we put in all the landscaping in the front of our house.  I was pregnant and we wanted to get it all done before the baby came.  We both had this feeling that Anna was just inside taking her morning nap and one of us should probably go in and check on her – but then reality hits and it's like someone just poured a cold bucket of water over us.  

Not having Anna is very painful.  We miss her so terribly.  We try to keep busy around the house and we also took a trip to Chicago last week to do some shopping at IKEA - daddy refers to it as "retail therapy."   We did have a good time and bought all kinds of things for the house.  Of course, we were there during the week, which meant a lot of stay-at-home moms and their kids out shopping.  Everywhere we looked there were babies and I know we both thought of Anna each time (not like we need reminders to think of her as our minds are always consumed by her.)  Oh, how we would like to have another baby….  Anna can never be replaced and she will always be our first, but when you've been a parent you just can't go back.   At this time, the doctors are pretty sure that the HLH is hereditary so we just can't risk getting pregnant again.  The chance of our second child having HLH is 25% and that percentage is just too high.  At one point while we were shopping at IKEA, we walked passed a blond, young mother with a child of oriental background in her cart – daddy turn around and smiled at me.  Maybe that was a sign….

 March 16
This past Friday, March 14, Anna would have been 7 months.  When Anna was born, I bought a book "What to expect the first year."  The book says that by the time the baby is 7 months, she should be able to sit without support, feed self a cracker, etc.  I remember reading ahead when she was just born thinking about this spring and what she would be able to do.  My birthday is in April and we were all planning to head to Florida to celebrate.  I would picture Anna, with a pink sun hat, sitting underneath a big umbrella on the beach.  Well, what has happened to us the past seven months was not what any of us expected.  I look at pictures of Anna when she is smiling and happy and my heart aches.   My mind has a hard time realizing that I will never hold her again.  On the other hand, I remember how terribly sick she was and I am comforted by knowing she is no longer in pain.  

 March 18
I've written a couple of updates, but for some reason has had a hard time posting them to the site.  I think I am ready now.  I hope you are still out there visiting Anna's site.   It is Tuesday morning about 9:29 a.m.  Anna died two weeks ago today at 9:55 a.m.  I don't know what we were doing at this exact time two weeks ago, but I know we had already decided to have Anna extubated and we were preparing.  I would sit in the white chair right by Anna's bed and daddy next to me. The grandparents also had chairs around the room.  Right before she was extubated I turned on Anna's CD.  It happened so fast – the doctor removed the breathing tube and Anna died within minutes.  I think Anna was passing faster than the doctor had anticipated.  She was trying to get Anna in my arms as fast as she could.  It was the most wonderful feeling to have her in my arms again.  As I took her in my arms I said "Oh, Anna Panna" (Swedish equivalent of "Anna Banana" which we also called her all the time). She was so swollen, bruised, poked and bleeding, but she was my beautiful baby.  Her dying in my arms will always be one of my most precious moments.

"Glimpse of Heaven"
Written by Erika Ward

Played as Anna died in my arms and also at her service the following Saturday.

Anna, my angel, sent down to me from heaven above.
God's gift is your life and the depth of your unending love.

I look into your eyes and my heart begins to melt.
The greatest treasure on earth is this
Love I had never felt
Until you, beautiful child, were given to me.

The years pass so quickly.
Before my eyes you grow and change.
But one thing is certain, my love for you is here to
stay.

Anna, you have changed my life.
And your love has set me free.
Without the love of a child I felt lonely and
incomplete.
But your, beautiful child, have made me complete.

Love, what awesome love,
Between this mother and her child.
God gave me a glimpse of heaven
When He gave me this gift,
You Beautiful Child.

It's now approximately 9:55 a.m.

 March 25, 2003
So what have Anna's mom and dad been up to lately, you wonder.  We've been trying to keep busy, busy, and busy.  It's Tuesday again (now it's been three weeks). I don't keep track of dates anymore, it's all how many weeks, days since Anna died.  Lately, I've been struggling with how sick Anna was.  It may have been three weeks ago that Anna died, but it's much longer than that since I really saw my girl.  I took a lot of pictures during transplant knowing that Anna would never remember (thankfully that I took so many pictures, that Anna wouldn't remember). I had to create the memories for her.  I look at all of her pictures daily, and the ones where she is so sick break my heart.  On January 29, the morning after she had the reaction to the Atgam, I carried Anna from the PICU back to her BMT unit.  The nurse was putting new sheets in Anna's crib and I was cradling her in my arms.  I would lift her close to my face and kiss her neck, when she was well she would squeal in delight, but this day she didn't squeal, but her whole face
lit up in a huge, toothless, grin. I think that was the last day I saw pure joy on her face.  She may have attempted a few smiles after that, but the smile on her face that day is etched in my heart forever.
 
Yesterday, I went to St. John's to return my breast pump - my close friend over the past eight, nine weeks.  I had intended to breast feed Anna until she was at least one year to give her as many antibodies as I could. She was going to be immune-suppressed so that was the least I could do plus I wasn't ready to give up those late night feedings when the house was quiet and it was just the two of us.   We went back to St. John's and Dr. Rob's one week after Anna died so going back to the hospital wasn't too hard, but returning the breast pump was tough.  Of course, I had to continue to pump even after Anna died to avoid getting completely engorged.  The actual pumping wasn't emotionally hard for me as I had been doing it for so long, but I found that feeling full of milk was both physically and emotionally painful. I had all this milk, but where was my baby?  Now the pump, as well as my milk, is gone (and I'm back to padded bras).    I was just going to drop off the pump and then head home again, but before I knew it I was on my way to the seventh floor and Dr. Rob's.  I just couldn't go home without stopping by to say "hi".    The office was busy as usual.  I'm glad I stopped by.
When Anna was first diagnosed, I had a very hard time being out in the "normal" world seeing moms with healthy kids.  Shortly after Anna was diagnosed, I'd gone to the mall.  I think I stayed for 30 minutes (enough time to buy Anna two adorable outfits - I still remember which ones) and then had to leave, knowing I'd start crying if I stayed any longer. Life just felt so unfair.  Why did my beautiful baby have to be sick?  I wanted to be one of those moms shopping with their girlfriends, baby in stroller. Going to Dr. Rob's twice per week became my refuge and social outlet.  Since we wanted to avoid exposing Anna to a lot of people, this is pretty much the only place I took her.  She may have gone to the grocery stores three or four times, Target a couple of times, and a few other places, but Dr. Rob's is the one place we went to weekly.  Judy, one of the nurses, would always pick up Anna and hug her before she started the Zofran.   I can still see Judy cuddling with Anna and it meant so much to me.   Anna was hugged more by those nurses than she was by her own uncles and aunts (because of distance and having to keep Anna isolated due to infection) so how can it not make me feel good to go?  Amazing people work in that office and amazing families go to that office on a daily basis.

My days are consumed by thinking about Anna.  I've become so accustomed to writing on the site that as I'm thinking about her and what we have been through with Anna, I formulate what I will write in my head.  Anna's grandma and grandpa and my sister visited over the past week, which we are thankful for as it keeps us busy. Actually, it kept me so busy I haven't had time to sit down to write which is why you got an "earful" today.    The emails you send are like daily little treasures so keep them coming.  This is wonderful therapy for me and I am thankful that you are out there reading and remembering Anna.

 March 30, 2003
We survived the week which feels like a great accomplishment.  Some days we both feel such hope for the future, but some days it just plain hurts too much and life feels so unfair.  This past Wednesday, I felt like I needed to cry all day, but the tears just wouldn't come.  Finally I said "I think we need to pack Anna's clothes" – I knew that would open the flood gates.  We grabbed a big box and a box of Kleenex and headed into her room.  We decided to pack her stuffed animals first  -  daddy grabbed a teddy bear and that did the trick – we cried.  We laughed through the tears saying that we weren't doing too well – we had a lot of clothes to pack and we were already sobbing.  We spent 1 ½ hours going through all of her clothes.  I found the little red dress with the white collar a friend gave Anna and I'd always thought she'd wear it on her first birthday.  We found the little jean jacket with the sleeves still rolled up from when she wore it last.  My little chunk needed a big size for her chubby tummy, but the sleeves were too long!  I found the blue T-shirt with white and pink flowers I'd bought on sale at Babies R Us this past fall.  I remember struggling when I bought it because the thought did cross my mind that she may not be around to wear it this summer.  I got mad at myself and thought "you will plan for the future -  Anna will be here", but yet I was now folding it up and putting it in a big box.  We packed the Baby Bjorn I'd used on walks around the neighborhood; we packet the little baby tub she'd only used once (I could only give her sponge baths since the Broviac dressing couldn't get wet); we packed the hooded towels and washcloths, we packed the crib sheets…..  One year ago we didn't even have any of this stuff and now it's already packet in boxes labeled "Anna."  The closet and her dresser are now empty.  The crib and the changing table are still in her room – we decided to save that for another day. Yesterday, I spent the morning going through more of Anna's stuff. As any first time mom, I had saved everything that had to do with Anna - every card, every note….  There were so many "congratulations, it's a girl!" cards.  Then I found the cards stating "get well soon", "we are praying for your little girl", etc.   Then Christmas cards with more "get well cards."  We spent Christmas in the PICU at St. John's – being at the hospital over Christmas was fine with us – at least she was alive.  December 13 had been a day when Dr. Bob said that there was still hope, but it would be hour by hour.  We were thankful for Christmas.   Then I found all the cards from transplant, including "baby's first Valentine" cards…. Then the sympathy cards….  

Anna lived for six months, 19 days – approximately 28 weeks.  The first eight weeks were pre-diagnosis, of the next 20 weeks we spent 10 in the hospital, 10 at home.  Gosh, how life can feel so incredibly unfair at times.  But at the same time, those were the best 6 months and 19 days of our lives.  We didn't worry about keeping the house perfect, we didn't spend time arguing over stupid stuff, we didn't complain about Anna being cranky or not sleeping through the night – we had fun. We loved that little peanut with our entire beings and truly enjoyed the moment.  Yes, we were insanely worried and scared, but we learned quickly not to worry about tomorrow – just enjoy the day.  We are convinced that we loved Anna more in those short months than we would have in a lifetime had she not been sick.  Now we can look back knowing that we have no regrets, no should-haves, and no would-haves – what a gift!

April 6, 2003
It's a very rainy and gloomy day here.  I spent most of the day cross-stitching.   I haven't really stitched since Anna died.  I was working on one project last year that I was supposed to finish before she was born – it's a cute, whimsical picture of cows and barns that would have been perfect in her room.  Well, I didn't get it finished before she was born and now I can't seem to pick it up.  I worked on a couple of projects while at Children's, but I can't seem to pick those up either. Yesterday, when I was out shopping, I found a cross-stitch of a little girl with dark brown hair, dressed in a white dress picking shells off the beach.  It reminded me of Anna and I had to have it.  I'm enjoying my new project.  

This past Friday, April 4, it was one month since Anna died.  It doesn't get any easier.  I've read a few different articles on grieving and I've quickly learned that grieving is so different for everyone – there may be some similarities, but that's about it. I read one article that stated that for parents who lose a child from a prolonged illness may have the opportunity to say good-bye, but according to the
article "that gives little comfort."  Hello!! We were given the opportunity to sing every song, say all we wanted and kiss and touch Anna before she died – I treasure those moments and they give me HUGE comfort.  Another article stated "the more you loved, the more you grieve" – talk about guilt trip when you're actually having a decent day!!  Anyway, I've also read other articles that do validate some of what I'm going through.  It is comforting to read and know that you're not going mad. We don't really put high expectations on what we do each day.  I just make sure that I get out of bed at a decent hour, I work out (I joined a gym and am really enjoying aerobics), I shower, get dressed and put make-up on.  After that, I play it by ear – most days I have "lunch dates" with friends which are life-savers. This past Friday, I even went out for lunch twice (good thing I worked out first – no really, I only ate once).

Oh, one more thing before I "sign off", we received the sweetest gift in the mail.  It was a little white, porcelain angel.  In the box was a simple note stating "Just a little reminder that your angel will not be forgotten" – it was signed "9 West BMT Unit Staff." Thank you for sending such a thoughtful gift.  It made our day!!!  We keep it on our kitchen table and it makes us think of Anna, but also of the wonderful
staff at Children's.  I hope all of you nurses know that not only did you take great care of Anna, but you took great care of us.  I feel I've made wonderful friends at Children's – you will not be forgotten. Speaking of Children's, on the way to my lunch date on Thursday, I had to drive by Children's for the first time.  If I had been walking, I probably would have turned around, but for those of you who know where Children's is, it's kind of hard to turn around on Kingshighway so I had to keep going.  I almost hit other cars (don't tell my hubby) as I was trying to look up to the ninth floor to see if the blinds were open or closed in Anna's room.  It was hard, but as I told my friend Chris when I got to her office "it was harder than I thought – but I'm here!"   There will be a lot of difficult "firsts" ….

 4/30/03
Last Thursday, we returned from a wonderful trip to Florida.  For those of you who haven't visited Sanibel Island, make it your priority for your next vacation!  We spent the two weeks relaxing on the beach, hanging out by the pool, shopping, and just relaxing in general.  Hubby avoided a bad sunburn on his bald head and I was able to get a pretty nice tan.  We also took a few golf lessons and it is now our hope to become decent golfers.  My dear husband has never showed much interest in golf (I took a lot of lessons growing up, but didn't really get "hooked"), but after my dad promised to give him his old golf clubs and offered golf lessons, he decided to give it a try.  We had a very good time.  He really pushed to go to the driving range several times between lessons.  On days when the house seems especially quiet with the void of Anna, we will go the driving range or golf course.  It'll be a good, new hobby for us to enjoy together.  Since the house often seems all too quiet, we may be pretty good golfers at the end of the summer.

We, of course, also spent a lot of time thinking about the past months and missing Anna.  We were on Sanibel last year in April when I was six months pregnant and were already planning to come back this year in April with our new baby.  It's still hard to actually grasp what has happened and that Anna is gone.  It is our intent to one day scatter Anna's ashes on Sanibel, but it was just too soon this year.  Maybe next time….

Another big event on our vacation was my big day – the big 3-0.  My parents and hubby woke me up singing happy birthday and I had breakfast in bed.  Of course, I was sad that Anna wasn't there with us – as I am always.  We did get some wonderful news mid-morning when good friends of ours called to tell us of the arrival of their new, and most importantly healthy, baby boy.  He arrived on my birthday and was even born within the hour of when I was born 30 years ago.  Maybe it was a round about way for someone from up above saying "Happy Birthday Mommy!"  It sure made my day.

Now we are trying to settle into some sort of normal again.  I am trying to run which for those of you who know me well is quite a joke.  Two weeks after Anna died, my sister was visiting and I got this idea that we should run the "Race for the Cure" [raises money for breast cancer research] a 5K race in St. Louis in June and one in August in Kansas City.  It obviously wasn't my brightest moment, but on the other hand some exercise sure won't hurt.

May 1, 2003
My dearest, sweetest little Anna,

I miss you more than words can ever say.  I long to hold you in my arms, to kiss you, and to say once more how much I love you.    I miss running my fingers through your hair.  I miss feeling your little baby fingers curl around mine.  I miss your warmth in my arms, your smell….

As I close my eyes, I can still picture every detail of you.  I know exactly what your little feet and legs looked like, your little hands and arms….  I know the shape of your tiny belly button and the exact location of your Broviac including the scar from your first one.  I know your lips, your little chin, and the shape of your forehead.  I know your little sweet nose. 

I know how you would sleep in your crib with one hand up by the top of your head and the other by your mouth.  You would always greet me with a smile as I picked you up from naps.  After changing a diaper I would stand with you in front of the mirror and I’d say “who is that pretty girl?  Who is that pretty girl in the mirror?”  You’d look at me and I’d say “is that my Anna Banana?” and you’d smile – a smile that would melt my heart.  I know how when you were nursing you would keep one of your little hands on my waste and you’d continuously give me tiny little squeezes.  I know how you’d keep your other hand on my arm and stroke it back and forth, back and forth.  I know it all and I miss it so. 

Anna, you gave us so much in your short life – I just wish you didn’t have to be sick and hurt so.  I wish I could have taken away all your pain and made it mine instead.  My heart aches when I think of how much you had to suffer and you couldn’t tell me where you hurt.  You’d cry, but I didn’t know how to make you feel better.  All I could do was hold you in my arms and many times that just wasn’t enough to make your pain go away. I am so, so sorry.

Your daddy and I know that you are now fine, but we are so lonely without you.  We so wish you were here with us.  We know that you would like for us to be happy, to live good lives, but without you my little baby girl, it isn’t easy.  Every day without you is such a struggle, but we won’t let you down.  Just be patient with us, little angel. 

Mamma

May 5, 2003
Yet another Tuesday is here….  It's been nine weeks now and in general it gets harder and harder as days go by.  I guess right after Anna died there was such relief that she was no longer suffering.  This peace seemed to overshadow the pain of missing her.  I still feel the relief that she is no longer in pain, but the missing part is getting so difficult.  There's been a lot of crying around here lately.

Yesterday, I went to the local photo shop to drop off some negatives to enlarge some pictures of Anna and get a few extra copies of some other ones.  I was excited to see what they looked like.  The enlarged pictures looked great – Anna was so darn cute!!!  The extra pictures I needed made were of Anna and her cousin Eila.  Anna was six weeks old in the pictures and Eila was about three weeks.  We'd propped them up on the couch with pillows.  They were so cute and the only time they got to meet.  I was looking at the enlarged pictures and casually reminded the cashier that I had some extra copies made of some other pictures too.  She started looking, and looking - but no pictures of Anna and Eila.  I felt the panic set in.  These were the only ones I had!!!  The cashier asked the other girl in the store, but no pictures, no negatives.  Maybe the pictures had been placed with another customer's?  The cashier started calling other customers at home, but had to leave messages.  One of the girls looked at me and said "do you know what was on the pictures?"   At this point I was in tears. Through the tears I tried to explain that it was of two little babies on a couch.  Finally I blurted out something like you have to find my pictures "my daughter died and that's all I have."  Well, I'm sure you can imagine the panic of everyone at the store.

Finally, I had to leave without my pictures, but with a promise that they'd call as soon as they were found. I was a basket case driving home – tears streaming down my face.  By the time I got home, the more rational part of my brain was finally kicking in.  I did have one copy of the Anna/Eila pictures at home
and of course they'd find my negatives.  Not even an hour later the phone rang.  A woman asked for me and as soon as I confirmed that I was who I was she excitedly called out "I got 'em, I got 'em."  Wow! What an ordeal.  But you know what – it's just another day for a grieving mommy.  You never know what's going
to hit you next.

May 16, 2003
It’s been a while since I updated. We’ve been pretty busy. My sister has been in town – keeping me very busy. Thanks to all of you out there who sent me emails and cards for Mother’s Day. It wasn’t a difficult day for me. I feel so honored to be Anna’s mom and am so proud of her and how strong she was during her 6 months 19 days she was with us. Right after Anna died, we were sitting in Anna’s BMT room at Children’s talking to Chaplain Jay. Jay told us that even though Anna is no longer with us one thing will never change – we will always be her parents, we will always be mom and dad. I guess that’s what I thought about this weekend – I am Anna’s mom and that is something wonderful to celebrate. Daddy showed up on Saturday with a pink, heart-shaped balloon and a card (a delivery from Heaven, he said). It was a sweet card signed: “Love, Angel Anna, PS. I’d love to write more, but I’m having so much fun.” I loved it – my husband is wonderful. I must say that I couldn’t even imagine going through this without him by my side. I love you honey!!!
Like I’d mentioned, we’ve been very busy this past week. Eva and I have been playing golf, running, shopping, etc. My sister always makes me laugh so there’s been a lot of that too. I’m glad she’s been able to stay all week to entertain me. She is currently outside cutting our grass so I’m feeling a little guilty sitting here writing - I’d better go….

Friday, May 23, 2003 7:45 AM CDT
This past Wednesday we along with our friends Chris and Joe and four of the "guys" from work went to Children's for a Memorial Service. The hospital holds these memorial services once per month for children who have passed away. There were about 10 children remembered at Wednesday's service. During the service parents can share stories about there children which some did. We decided beforehand that we would not say anything - we knew even before we got there how hard it would be. I started crying as soon as I opened the program and saw Anna's name in black and white under "we remember...." The service started with Chaplain Jay asking everyone to introduce themselves. By the time he got to me, I was crying so hard I couldn't even say my name. To make matters worse, we realized that the first child listed in the program, Corey Atkinson, was Anna's fellow BMT patient. He was 17 and we would often chat with his parents, especially with his dad, in the family lounge. His parents were so nice and sweet. Corey died just a few weeks after Anna - he got an infection and couldn't fight it off. How my heart aches for Corey's mom and dad....

As we entered the auditorium, everyone picked a stone which represents the one we lost and gives us something concrete to hold on to. Jay spoke beautifully of the two stones he picked - one for Anna and one for Corey. A little, tiny white one for little, tiny Anna and a bigger more robust one for bigger, football-playing Corey. Jay spoke about when he met Anna the first time. It was January and we were having preliminary meetings with the BMT team, which includes Jay. Jay was talking to us and my parents and I had Anna in my lap. Anna kept looking at Jay and smiling and flirting with him. It was so distracting for Jay he kept getting off track.... It was so cute. It makes me happy to think about that moment.

In the end, we cried a lot of tears, but it felt very good.

 Sunday, June 1, 2003 3:30 PM CDT
It's been awhile - again.... We have been out of town a lot lately. Two weekends ago we went to Santa Fe, NM with Anna's grandma and grandpa. The following weekend we headed to Oklahoma City for a wedding I was in (my roommate, Laura, from college was getting married). As soon as we returned home, N. headed out of town for work and K.C. (our dog) and I headed to Kansas City to hang out with Anna's mormor and morfar as well as the rest of the family. All trips were very good even though it crosses your mind that we wouldn't have gone had Anna been here - but it's not worth thinking that way.

This Tuesday we are heading to St. John's to wish nurse Susanne all the best as she and her husband take off for the east coast. I know she will be incredibly missed by the kids and their families (us too even though we don't see her that much now). When Anna was at transplant, Susanne would drop off food and visited us several times. When Anna ended up in the PICU after the Atgam reaction, Susanne left Dr. Bob "in charge" of all the kids at St. John's while she got in the car to be by our side. She was at Children's before we had even gotten in to see Anna in the PICU. That day was one of the many days we faced when we thought Anna wouldn't make and it was nice to have Susanne's familiar face and support by our side. The Friday before Anna died, Susanne came by to visit. Anna was still in the BMT unit, but she wasn't doing very well. Susanne told us to call anytime we needed her - a few hours later (around 11:00 p.m.) we were once again scared for Anna's life and called Susanne. She was there within minutes and stayed until 1:00 or 2:00 a.m. Having a nurse we knew well and trusted 100% was comforting. She also knows Yvonne at Children's very well which is a great plus. Susanne is a wonderful nurse and we will all miss her. We will never be able to express our gratitude for all Susanne did for Anna and for us and I'm sure other families feel just the same.

Tuesday, June 3, 2003 12:58 AM CDT
I just logged on to write an update because I really need to get something off my chest. I just received a phone call from a person stating he was calling from Sesame Street and that our child had been selected to receive 5 free gifts in the mail (I am sure he was trying to sell something too). He was talking so fast I didn't even get a chance to say a word (you know how that is when telemarketers call). Then he blurts out the question: "you do have a child in your household under the age of five, right?" Yikes! OK, so I should have just hung up the phone - N. gets so mad at me for being polite to telemarketers, but it isn't my thing to just hang up. I politely tell the man that no, we don't have a child under the age of five living in the household. Now he is somewhat confused "you don't have a child under five in the household?" he asks again. I am now getting a little frustrated - "no, our daughter died so I would prefer that you took our number off whatever list you are calling from." So you would think that now the guy would apologize for calling, but no all he says is "I will remove you from our list and on the behalf of Sesame Street I thank you for your time...." Well, he said a lot more than that but he was obviously just reading off a screen. I know that we are on numerous mailing lists and obviously phone lists for "baby stuff" since we had a baby nine months ago. It would be unrealistic of me to think that we wouldn't get phone calls or mail (believe me I get a lot of sample diapers, formula, etc. in the mail), but is it unrealistic to think that people could be a little bit more sensitive when they call???? This won't ruin my day, but a phone call like that could....
Anyway, thanks for listening.:)

Friday, June 6, 2003 11:31 AM CDT
Susanne's party on Tuesday was very nice. Both of us enjoyed seeing Drs. Rob/Bob and the rest of the gang, including, of course, Susanne. There were a lot of people there despite the cool weather. N.  was there with a few of the guys from work handing out hats, T-shirts, etc. to the kids - it was a great success and I know N. really enjoyed himself. It is always so inspiring to see the kids and the families that fight so hard each day. There were a few kids that braved the weather and were released from the hospital for a short while just to get to go to the party. Some of you may have read the story in the St. Louis Post-Dispatch last week about Jay and Bobby who both graduated from high school. They've both fought hard this past year - Jay fighting Leukemia and Bobby HLH. The very first day we went to Dr. Rob's office last fall for Anna's first, in-office chemo treatment, we were introduced to Bobby. It made a world of difference to me to see Bobby, looking healthy and strong after Anna was just diagnosed and I was so scared. He was an inspiration and still is. We learned from the story in the paper that Bobby's HLH was back - how I hate HLH!!!
Since Anna died, I don't bother letting my mind wonder "why?" There is no point asking why did she have to be sick? why did she have to die? Because no answer will ever be good enough for me....never.... When I heard that Bobby relapsed and I see the children fighting for their lives I must admit that I want to scream WHY? WHY? WHY?

Monday, June 9, 2003 8:45 AM CDT
It's Monday, again. I must say that the days go by pretty fast which I am incredibly thankful for. I know this pain will never go away, but I know that as each day goes by I will feel better, I will. I have to.
We agreed that this past week was a good one. Please know that when I say "good" it means that our thoughts were consumed by Anna and missing her terribly, but we felt we could face each day, get out of bed, get things done, and even laugh and smile. A good day now includes a great amount of pain and tears, but believe me it is better than the bad days when your stomach hurts, you are fighting back tears all day long, it's hard to look at pictures of your little baby, and your heart aches to a point where it feels difficult to take a full breath of air. Yesterday, We went to the bookstore and bought a couple of books on grieving and one on adoption. As we paid for the books the saddness briefly came over me. Here we were, we waited 7 years to have a baby so that we were financially stable, had secure jobs, our marriage was strong.... I had an easy pregnancy, easy delivery - no problems at all.... We had a beautiful baby. Now, 10 months later we are buying grieving books in an attempt to try to deal with the death of our first, only, beautiful baby girl. But I also have to recognize the second book, about adoption, our hope, our future, our second beautiful baby....

Wednesday, June 11, 2003 8:02 AM CDT
I guess the books we bought the other day about grieving has really got me thinking. It's also made me realize how little we all know about grieving and how uncomfortable people are talking about death. I've had people tell me that "it seems like you are back to normal." I don't want to sound harsh, but I will never be back to "normal." I will never be the Karin I was before Anna. My life, my attitudes, my beliefs, everything has changed forever. We talked about this last night. This has been a complete life-changing experience for us - we'll never be the same. We are still going through the change, finding our way, but we both believe that eventually, with time, we will be strengthened, we'll be better people. Right now it doesn't always seem feasible that we will ever be happy again, but we both said last night, through our tears, that when we are able to feel true happiness again it will be "happier" than we've ever felt. With Anna we learned that you can't wait for tomorrow to love someone or wait for tomorrow to be happy. Do it today as tomorrow may not come....

Thursday, June 12, 2003 9:00 AM CDT
I'm a little sleepy this morning. K.C., our Chocolate Lab, started vomiting over night and we had to get up several times to clean the carpet. We are now officially out of carpet cleaner. I guess we could have locked her in the laundry room or something, but we are real softies when it comes to this dog so that didn't happen. On Tuesday I had taken her in for X-rays. She has hip dysplasia and now also has inflammation in her elbows. Because of her bad hips, she puts more weight on her front and the extra weight on her front legs is apparently too much for her elbows. Not much we can do. We keep her comfortable with Carprofen. Good thing she appears to have an incredible pain tolerance - she limps, but that doesn't hold her back from anything.

K.C. has been very good to have around over the past few months. After Anna was diagnosed and while at transplant, K.C. spent most of her time in Kansas City. When she returned after Anna died, she was a little confused. She really didn't care much about Anna, but always seemed to at least want to know where she was. When Anna and I'd come home from a doctor's appointment, K.C. would run up to the car seat first just to make sure Anna was there. One thing that K.C. did love was Anna's socks. If I had Anna in my lap, K.C. would sneak up (as only a 65-pound dog can) and gently pull Anna's sock off her foot. It was cute.

OK, enough dog-stories. I have to go running. Saturday is the big 5K race and I have to get my last run in for the week.

Sunday, June 15, 2003 12:13 AM CDT
Father’s Day 2003

Don't cry for me Daddy
I am right here
Although you can't see me
I see your tears
I visit you often
Go to work with you each day
And when it's time to close your eyes
On your pillows where I lay
I hold your hand and stroke your hair
And whisper in your ear
If you're sad today Daddy
Remember I am here
God took me home
This we know is true
But you will always be my Daddy
Even though I'm not with you
I am Daddy's little girl
We will never be apart
For every time you think of me
Please know I'm in your heart.
I Love you Daddy!
Your Baby Girl

(Author Unknown)

 Tuesday, June 17, 2003 7:54 AM CDT
I added a picture of me and my sister from the race this past Saturday (don't know if you can see the little buttons we have on - they are of Anna). I had a sign on my back that said "I race in memory of Anna Banana and in celebration of my Mom" (my mom was diagnosed with breast cancer October 2001). We all had a good time. Eva and I finished in 38 minutes which we are very proud of. Now I have a time to beat in August when we run the same race in Kansas City! It's going to be hot in August so I am really going to have to train....
I'm going to have a busy week. We have friends coming in town this weekend, I have lunch plans most days which keeps me busy. It seems like after working out, getting ready, going out for lunch half the day, or more, is over. It's good to stay busy though. I don't know what I would do if I didn't have friends to hang out with during the day.
Tomorrow night (Wednesday) we are going to Children's again for another Memorial Service. We asked to have Anna added to the list of children again this month. Jay, the chaplain, said we could come back as often as we want. We both felt that it was healing for us so we wanted to do it again. Please know that anyone out there is welcome to attend. It's going to be at 6:30 p.m. in the third floor auditorium - it's really a very touching experience seeing all the families there remembering their babies and of course we would love to see you.

Thursday, June 19, 2003 8:00 AM CDT
Yesterday morning the phone rang at 4:00 a.m. (wrong number). When I woke up from my deep sleep by the phone ringing, my life was perfect. My husband was by my side, our dog sleeping by our feet (yes, she sleeps in bed with us) and my baby was snoozing next door in her crib. It was like a dream that was gone as quickly as it came. It was only the second time since Anna died that my mind (or heart) played a trick on me (not a fun trick, I might add). The first time it happened was one night when N. got home from work. When Anna was here, I would always give N. a long report of what kind of day Anna had had. How we had laughed about something, how she'd soiled three outfits, how she'd had a great nap, how she'd been so cute about something, how she'd played with a toy, etc. My first thought that night when N. walked in the door was that feeling of wanting to tell him what Anna had done that day.... Oh, how I wish she was snoozing next door and how I wish I could tell her daddy what she'd been up to for a day....

Last night we went back to Children's for the Memorial. It was much easier this time than last - still very sad, but easier. I even went back up to the BMT unit. I walked into Anna's room which looked the same. My feelings were mixed as I was up there. Thankful we were not there, yet longing to go back.... The only thing that didn't look the same was the view. The view I remember of Forest Park was one of bare trees, often covered with snow or ice. Now Forest Park is green, with huge, lush trees. Our hearts are still breaking, but life goes on, new seasons come and go.

Sunday, June 22, 2003 8:33 PM CDT
I've been sitting here trying to come up with something to say. I just keep staring at the picture of Anna. Her lips so sweet - exact color of her little night gown. She is so comfortable with her daddy. I can almost hear her breathing - small, sweet baby breaths.... Maybe a little twitch in a finger, a soft moan.... Sweet, sweet baby. I wish I could reach into the picture and lift the gown so I could see her little, tiny toes.

I miss you Anna.

Thursday, June 26, 2003 8:07 AM CDT
I know it's been a few days.... It's been a busy week and honestly I have been here trying to update daily, but I just don't have anything to say - I just can't seem to put into words what I feel. My heart has been aching more than usual this week. I've decided that PMS and Grieving is NOT a good combination. :) Good thing the PMS, at least, is shortlived. I know, I know, this is too much information!!!!! Give me a few days and I'll be back to my "normal" self.

On a happier note. Please see my information above about the Golf Tournament for Anna. I'm really excited about this. It honors my baby girl and keeps her memory alive and it raises money for reasearch on HLH which will help other kids. I've been in training so you'll see me on the course!!

Saturday, June 28, 2003 7:52 AM CDT
Yesterday as I was heading to the grocery store I was stuck at a red light. I had the music on in my car and I was looking around. On the side of the road, there was a small grassy area with a tree. I turned the music off and gazed at the tree. The branches, with leaves so green, were swaying in the wind.... As the wind was moving the branches and the sun reflecting from each leaf it looked like it was shimmering in gold and silver. How pretty - this lonely tree on the side of the road. Thousands of people have passed that tree, but how many have noticed its beauty?

Monday, June 30, 2003 4:07 PM CDT
I'm still in a valley it seems in regard to this grieving journey. It's hard and somewhat frustrating to feel so sad when you really thought you were doing better. But I'll go with the flow. One thing both of us discussed soon after Anna died was that we wanted to make sure we felt all we needed to feel and let our feelings lead the way. Greiving is not something that happens to you it is something you have to work very hard at. It's a full time job. We are indeed working very hard. We don't want to leave anything behind that will haunt us years down the road. We want to deal with this now.

I haven't read much in my grieving books lately, but last night I picked one up. It's just a small book with daily meditations - simple and easy. This is what I read last night (there was more, but I won't include the whole page):

"Life seems somewhat whole again. Laughter is possible, even occasional joy. Then one day, without warning, there is a return of the deepest, most wrenching emotions, taking us back to the early days. They cause us to feel confusion about being healed."

One the same page was this quote by Tan Neng:

"Joy and pain can live in the same house. Neither should deny the other."

How appropriate.

Thursday, July 3, 2003 7:28 AM CDT
Had a weird dream last night that left me feeling kind of funny this morning. A bunch of my family from Sweden and all kinds of people I haven't seen since college showed up for this huge party we were having in memory of Anna. I just kept crying as I saw more and more people I hadn't seen in so long. It was just an awful feeling. It ended with me eating those little After Eight mints, but instead of dark chocoloate they were white chocolate!!!:) How strange.... What does this mean you think??? I've heard other moms having dreams where they see their children again, but I haven't. I don't think I'm ready for that. I think it would be too painful to wake up.

I hope everyone has a happy 4th of July. It is actually my first as a US citizen as I just became a citizen this past December 6. I was scheduled to be sworn in with a large group of people, but we were able to arrange a private swearing in with the judge. We were so scared of exposing Anna to any infections, but this way she was able to come along. It was so nice of them to be so understanding of our situation. For the swearing in ceremony, Anna was dressed in a white shirt, red dress and blue tights - she was so cute!!! I'm glad that I have that memory with Anna on such a big day.

Monday, July 7, 2003 10:34 AM CDT
We went to Kansas City over the weekend with our friends Chris and Joe. We spent Friday at N.'s parents house and Saturday with my family. We had a great time!

After Anna died, a friend of Anna's grandma gave her a plant - an Anna Belle Hydrangea in memory of Anna. Anna's grandpa placed a small stone by the plant that says "In Memory of Anna." On Friday, both my niece Eila  and my nephew Niklas came over.  I decided that I wanted to take a picture of the two babies by Anna's flower. We put a blanket down, but the situation quickly went downhill. Eila wanted her mommy and Niklas was most interested in eating grass and mulch. I had to be fast, but did get a few pictures (check out the photo album).

It was great to see the family, but it seems as if Anna not being there is more obvious when we are all there. One little one is so painfully missing. One night when we went to bed N. turned to me and said "I miss Anna." That pretty much sums it up.

Thursday, July 10, 2003 8:03 AM CDT
Grieving is a process that involves a lot of choices. There is always that choice between staying in bed or getting up, going to work out or not, taking a shower or not, putting on make up or not.... The list continues. Some days it feels like my entire day is filled of very difficult choices and on others the choices don't seem as hard. Most often I make the "right" choice. This morning I already decided to get out of bed (which is rarely a difficult choice) and I've already decided to go running outside. I'm still bargaining with myself about "when" I'm going running which has nothing to do with grieving, but has all to do with that running stinks and that it's hot outside :)....

I heard a new mother state the other day that having a child was like someone took her heart out and placed it in her arms. When Anna died, my heart went with her. I am slowly taking some of the pieces back and putting my heart back together, but it's still aching. If you ask me if it gets easier, my first reaction would be "no." I would quickly answer 'no' because I am still in pain, missing Anna like crazy, but if I think about the way I felt two weeks, six weeks, or two months after Anna died, it does get easier. Not easy, but easier.

Friday, July 11, 2003 7:02 AM CDT
When I was younger, I had a pretty nasty temper (sorry mom and dad), but I've really mellowed out - a lot. Especially since Anna was born and then her illness, I've just learned that it's not worth getting so worked up (one of Anna's very precious gifts). I very rarely get mad now a days, but last night I was pissed (for a lack of a better word). Here's why:

We received a letter in the mail that came from some law firm in the St. Louis area. I didn't bother opening it during the day since I had no clue what it was and I figured N. knew about it. (I usually open all the mail so Someone was obviously watching out for me.) He didn't get home until late and then opened the letter (I had forgotten all about it). It was a DEBT COLLECTOR that said we owed $915 dollar for "Patient: Anna R." from Washington University (Children's)!!! It was not a very nice note and stated "do not contact our client." I was ready to get in my car at 9:00 p.m. and head straight for Children's. We have paid EVERY bill we have ever received. We have never received a bill for $915. We completely understand that bills will continue to come in for Anna's care and we have no problem paying for them, but do they have to be so insensitive??? I have no complaints about Children's and we would have chosen the same hospital had we done it over again. I do believe that the hospital should "flag" families whose children died so that as they send out bills they know what they are dealing with. We have the financial resources to pay for these bills, but what about the families (and I bet there are many) who are grieving their children and on top of it are struggling financially!!?? Getting a nasty letter from a debt collector sure isn't the way to end your day. I find this situation so horribly offensive. We were incredibly angry, but it won't put us into a depression - but it could do that to someone. When you're grieving you are very sensitive and a letter like this could really make someone in grief take several steps backwards and that's why I am so mad.

In the end, wedecided that we would try out our brand new hot tub to try to relax. Boy, were we relaxed when we got out - your whole body is just complete mush (Children's will still hear about our complaint, but they're lucky we bought a hot tub to relax us first!!:). We both agreed that the hot tub was one of the best things we'd done - even though it doesn't even touch the best thing we ever did - ANNA.

Tuesday, July 15, 2003 8:05 AM CDT
Good morning all! Before I forget, if you know my little sis, please send her an email or call her today as it is her 27th birthday!! Happy Birthday Eva!

I had an eye-opening conversation with a friend the other day. We were talking about this site and she said that this is how she finds out how I'm really doing as I always say I am "fine" when we talk. I think what has happened is that when I write on this site I'm usually sad and missing Anna terribly. Because I write most often when I am very sad, it doesn't really give a full picture of how I am doing.

This site is very therapeutic and I can't explain how much it has helped me over the past few months. If I am really sad, I'll make a deal with myself. I'll allow myself to completely wallow in my sadness, write an update to get it out, which usually includes a lot of crying, but then that's it. I know that if I find a distraction (whether it's cleaning the house, calling a friend, taking a shower, going shopping or something else) it usually makes me feel better.

When you see me, more than likely I'm smiling, I act happy, we'll laugh, we'll talk about things other than Anna - things seem pretty normal. And you know what? it feels normal to me too. I'm not making myself smile or laugh. Do I miss Anna? YES Is my heart aching? YES, but I also know that life goes on. This is what Anna wants....

I will probably continue to write updates when I am very sad, but maybe this will put it in perspective. We are still very sad and still need your help - please don't stop the emails, phone calls, etc. We both feel we have come a long way and a lot of credit can be given to our friends and families who have stood by us....and still do. Thank you.

Don't forget to look up, Anna is smiling!

Saturday, July 26, 2003 3:31 PM CDT
It's been a while. I've been in Kansas City since Thursday, July 18 and just returned home today. It was a busy week. I helped out with the upcoming golf tournament. I'm completely in awe by the response. We have over 120 players!!! It's wonderful.

On Friday, the day after I got in town, I watched my niece Eila for a few hours while my sister-in-law had some appointments. N.'s mom (or dad) usually watches her but N.'s grandmother was in the hospital so I offered to be with Eila. I'm glad I did, I really enjoyed myself and it was the first time I have spent quality time alone with my niece. She's a cutie.

Sadly, N.'s grandmother didn't improve. She'd fallen and broken her hip and ended up with some blood cloths after her surgery. She passed away early Saturday morning. It's not been easy. The funeral was on Tuesday so N. came in Monday night. I really struggled at the funeral - it brought so much back....

When Anna was about five - six weeks old, Anna and I were in Kansas City for a week and Anna's grandpa and I took Anna to Grandma's one afternoon. I remember that I wanted to take a lot of pictures and video of the two of them. Grandma was 92 so I figured that Anna may not remember her great-grandmother.... Grandma kept saying (about Anna) "she's so precious, just precious...." Those pictures have taken on a whole new meaning now. I'm so glad I took them.

I really enjoyed being in Kansas City for a week, but it's also good to be home with N. and K.C. again. I guess I'd better go check what is left in the fridge (I'm guessing not much) and head to the store.

Thursday, July 31, 2003 8:37 PM CDT
I'm still here!! I see you are still here too as I see the number of hits increase by the day. Thank you!!

We've been busy, busy, busy, which is very good. Tomorrow is August 1 and last year on Friday (which last year was August 2) I went on maternity leave from my old job. I was due on August 9 and wanted some time before the baby to get ready. How your life can change in just one short year!!! There's been a lot of sadness, but we were so incredibly blessed to have our beautiful baby girl even if only for a short 6 months and 19 days.

Now, I just have to take one look at the list of players for the golf tournament and all the sponsors and feel very, very blessed. Anna continues to touch all of us who got to know her.

We all love and miss you little Anna Rebecca!!

Sunday, August 10, 2003 9:05 PM CDT
Tomorrow is the first annual Anna Memorial Golf Tournament. We have been in Tennessee and also here in Kansas City over the past week and we've been very busy. We're so excited about the tournament tomorrow. It feels so good to do this in memory of Anna.

Keep your fingers crossed for a beautiful day. I'll update again after the tournament.

Thanks for continuing to check in on us!!

Wednesday, August 13, 2003 7:56 AM CDT
I will leave the results of the golf tournament above for a while so that everyone gets a chance to see the wonderful results. I bet they'll celebrate at the Histiocytosis Association when they get the check!! :)

It was such a neat day. Thank you to everyone who participated and were involved in this tournament. A special thanks go to my mom and dad who worked so hard to make this a success. I know my dad, especially, spent hours and hours to pull this off.

Before the tournament, I was a little nervous about how I'd feel when it was over. The tournament gave me something to look forward to and work on. I was a afraid that after the tournament I'd feel sort of down since I didn't have anything to do and with Anna's birthday coming up.... Well, so far I am still on such a high from an awesome day and I have a feeling it'll stick around for a while. :)

PS. I obviously had an angel on my side all day Monday - check out Closest to the Pin #17!! :)

Thursday, August 14, 2003 6:00 PM CDT
I wrote this for Anna a few weeks after she was born so that she would know what happened on her birthday.

Your dad and I found out that we were having a baby on December 13, 2001 and the doctor confirmed it on December 19. We were very excited, but also a little nervous. Up until then, it had only been the two of us and K.C. of course, but were we ready to take care of a baby?? It was very exciting to tell your grandparents that you were on the way. I didn¡¦t look pregnant for a long time so I didn¡¦t tell anyone at work for a long time, which made the whole pregnancy seem pretty short. Before we knew where the time went, it was August and getting close to your arrival.

I woke up about 1:00 a.m. on August 14, 2002, with some "funny" pains in my stomach. I didn't want to wake your dad in case it was just nothing. You were due to arrive on August 9 so a thought crossed my mind that this may be it... Around 2:30 a.m. dad woke up. Immediately after hearing that I was having contractions he got dressed and wanted to get in the car and drive to the hospital. I had to explain that we first needed to time the contractions and then call the doctor when the contractions were five minutes apart.

Finally around 4:30 a.m. I called the doctor who told us to go ahead and go to the hospital. At the hospital, the nurse examined me and since I was now three centimeters dilated the nurse said that yes, I was in labor, and was to be checked in. I was checked into a delivery room and they checked my contractions and monitored your heart beat for about ten minutes. Everything was looking good. It was about 5:30 a.m.

To distract me from my contractions, dad decided it was time to walk the hallways. He kept on asking me a bunch of questions (many of which I found silly) to keep my mind off the pain. One question he asked was if I could remember the last time dad had been in Kansas City. Could it have been Christmas? Or had he gone back after that? He kept asking and asking and finally I had had it and said: "I don't care when you were in Kansas City last" I didn't enjoy it at the time, but find it funny now and it really did help that dad tried to distract me with questions..

Every hour dad and I had to go back to the room to monitor my contractions and listen to your heartbeat. Around 8:00 - 9:00 a.m. I didn't feel like walking anymore and laid down in bed. A doctor came and broke my water, my doctor, Dr. Lekkas, had called and asked for my bag of waters to be broken since it would speed things up. At that time, I was already five centimeters dilated. The nurse (her name was Chris and was my nurse all day) said that she was surprised that I was that far along. The nurse stated that she could usually tell when patients are that far along based on their pain and stated that I must have a high tolerance for pain. After my water broke the contractions were getting much stronger and I was becoming more uncomfortable (I even got sick to my stomach, yuck!). To make sure I would enjoy your birthday, I decided to have an epidural. An anesthesiologist came in to give me the medication in my back. Some people say epidurals hurt, but I didn¡¦t think it was bad at all. The only weird thing was that my legs were shaking uncontrollably. No one had told me that this would happen, but the nurse said that it is very normal and it is because of all the hormones in the body.

After the epidural had been administered, I started to feel a lot better, but not great. It seemed that the epidural was numbing the left side of my body, but not my right. The nurse had me lay on my right side for a while, but it didn't help. Finally, the anesthesiologist had to come back and move the catheter that was delivering the pain medication so that it would numb both legs. Finally, it worked and I felt much better.

By noon I was 10 centimeters and it was time to push. The nurse had me push one time (which felt funny since I couldn't feel a thing), but you had not come down that far. Dr. Lekkas decided that she wanted me to sit up for about an hour and "labor down: which means that my body would push the baby out without me having to do anything. Since I had some great pain medication, I tried to take a nap. I even thought to myself "I am having a baby and I feel great!"
During this time, dad was very supportive and tried to help whenever possible. He drank a lot of coffee and played games on our new mobile phone. I can still hear the beeping noises from the phone when dad scored big in a game.

An hour later, still no progress. The nurse asked me to lie on all fours with her head down (I gave strict orders to dad - No Pictures!!) An hour passed, but still no change. The nurse called Dr. Lekkas and it was decided that I would start pushing. It was about 2:00 p.m. After waiting for about two hours, I was excited to start pushing. The pain medication had also been wearing off and I had a great urge to push. About 2:30 p.m., it was time for Dr. Lekkas to come and deliver. I had to stop pushing (which was not easy) until the doctor arrived. The doctor didn't arrive until about 3:00 p.m. or a little later so it was a long wait. When Dr. Lekkas arrived I pushed three times and you were born. Right before I pushed for the last time, Dr. Lekkas asked me "so what do you think Karin, a boy or a girl" I remember answering, "It's a girl!" - and I was right.

You came out with a cry and all I could say when I held you for the first time was "she's perfect, she's perfect."

Friday, August 15, 2003 6:01 PM CDT
Yesterday went very smoothly with few tears. We were so busy all day (we planned it that way) that it didn't leave too much time to think.

In the morning I went to Children's Hospital and dropped off some bagels for the nurses and also dropped off two "Anna Blankets" (More on my newest project "The Anna Blanket" in a later journal). It was good to visit.

I met up with N. at Dr. Rob's for one last visit (the office moves to its new building next week). We saw Ann, Judy and Jill - both Drs. were not in. Too bad I didn't get to see Dr. Rob as I hear he let the kids shave his head!! It felt nice to stop by.

We'd asked Joe and Chris over for dinner so I had to rush to the grocery store. I wasn't even at home until 4:00 p.m. and realized I had completely missed lunch. I have to be really busy to forget lunch!! We honored Anna's birthday with a nice meal, including Angel Food Cake for dessert!! We decided that from now on, we will always have Angel Food Cake on August 14.

In summary, a pretty good day. Like N. said, the golf tournament definitely helped put us in a good mood for the week.

Thank you for all the gifts, flowers, notes, emails and cards this week. They reminded us that in the middle of all this sadness we are surrounded by wonderful friends and family. Thank you.

Thursday, August 21, 2003 9:43 AM CDT
I haven't written in a while - again.... Seems like I've had to begin several entries lately with "it's been a while." I don't know why. I visit Anna's site daily just to look at her pictures (not like the house isn't filled with them!), see if any messages were left and often thinking about updating, writing an entry. The words just won't come.

It just took me 10 minutes to write above paragraph. I guess the words just won't come today either....

Monday, September 1, 2003 2:25 PM CDT
Rain has finally made it here!! We've been out of town again but returned today to a green and very wet St. Louis. I can't believe it is already September. Anna has been gone for almost six months which is hard to believe. By the end of this month, she has been gone for longer than she was here. Even though she isn't physically here with us, she is a huge part of our lives. A moment doesn't go by that I don't think of her....

Have you heard the country song about the little girl that asks her dad what it's like in Heaven? One of her questions is "do you think God could use another angel to help pour out the rain?" I bet Anna and the other little angels have been busy the past few days. How fun!

Wednesday, September 3, 2003 8:32 AM CDT
Happy 1st Birthday to Anna's cousin Eila!!!! Happy Birthday, also, to my sweet next door neighbor, Megan, who also turns one today.

Aerobics is calling, but I at least wanted to get those birthday wishes posted!

Thursday, September 4, 2003 9:27 AM CDT
September 4 - it's been six months and it SUCKS. Last night as I went to bed and this morning when I woke up, all I could think about was how much this absolutely STINKS. I guess sometimes it just hits you hard. I will have to live with missing my baby girl for the rest of my life. Yes, we'll have more children - we'll be happy, but it will be without Anna....... This morning I just feel like life is so incredibly unfair. Anna should be here with us!!!!

OK, enough of the pity party - I haven't had one in a while so I guess I deserve it. A good cry never hurt anyone, but I'm going to dry my tears and end on a better note.

I'm not going to turn this site into some sort of book club, or anything, but I recently listened to a book on tape (3-1/2 hours alone in a car is not healthy for a grieving mother so I made sure I had a book on tape as I headed to Kansas City last week - Thanks Linda!!). The book is "Letters for Emily" by Camron Wright. I laughed and cried in the car (much better than sobbing which I'd probably be doing without the tape).

Emily's Grandfather Harry has Alzheimer's and is getting worse. He only has a few hours per day when his mind is clear and he spends this time by his computer, writing letters for Emily (Emily is around 7, I think). Harry's health is deteriorating and Emily's parents finally decide to move Harry to a nursing home. The night before the big move, Harry dies. As the family begins to clear out Harry's home, they find three books of poems and stories written by Harry. The poems are odd and don't make much sense until they realize that each poem holds a password to documents on Harry's computer. As they enter the first password, a letter appears on the screen - a letter for Emily. Each letter is beautifully written and gives Emily (and the rest of the family) advice on how to live your life – about hope, love, disappointment, etc.

Anyway, I am no book-reviewer, but if you are looking for a book that will make you feel good, check this one out. I’m going to buy this book since it is definitely a keeper (only $8 on amazon.com).

Oh, I feel so much better than I did when I first started writing today. What would I do without this journal?

Friday, September 5, 2003 8:20 AM CDT
I'm feeling a tiny bit better today. Yesterday wasn't very good. It was one of those days where I avoided looking at Anna's pictures - I just couldn't do it. I didn't even bother putting makeup on.... I kept busy and made it through the day (not like I had any other choice).

People have told me over the past months that "they'd die if their child died" and that they don't know how I can do it. I bet a lot of other grieving moms out there have had that exact statement made to them. I never know what to say, but I read somewhere that another grieving mom once gave this answer: "funny thing is, I keep waking up every morning."

I hope all of you have a great weekend. I am going to really make a great effort to change my poor-me attitude and make the best of it. Yes, I'm putting my foot down - the pity party is over!!!

Love you Anna!!

Monday, September 8, 2003 8:59 AM CDT
I've been searching for a picture of Anna this morning to put on the site, but I can't find it. It's a picture of Anna in her K.C. Chiefs outfit - GO CHIEFS!!! We don't always get the Chiefs games here in St. Louis, but we did yesterday and they won. Anyway, Anna was a huge Chiefs fan - OK, I'm pushing it, but she did enjoy laying on the couch watching the TV when a football game was on. A lot of colors and movement, I guess....

I woke up this morning and I feel better, much better really. Thanks to all your kind guestbook entries and emails. Last week, and this past weekend, was really busy and with the six-month anniversary of Anna's death, I think it was just a little too much for my heart to bear. Now with that week behind me, I feel better.

"Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us."
Samuel Smiles

Monday, September 15, 2003 12:02 AM CDT
On Friday, the youngest family member on N.’s mom’s side joined Anna in Heaven. Little Drennon was 10 days short of turning four months. He was a beautiful little baby boy and unfortunately I know too well the pain that his mommy and daddy have to endure in the months to come.

We drove to the Kansas City area yesterday to be at the service. It was something we absolutely had to do. I had to put my arms around Drennon’s mom and dad....

Tuesday, September 23, 2003 9:33 AM CDT
I wish I could write that we have had a good week, but it really hasn’t been good. The day after we returned from Drennon’s memorial service, we received yet another heartbreaking phone call. Dear friends of ours are now grieving a sister. Another mommy and daddy are grieving their daughter…. We were back in the car for another memorial service that just shouldn’t have been. Michelle would have turned 24 today.

A friend of mine asked me last week, as we were talking about Drennon and Michelle and their families, if, by losing Anna, it is easier for me to know what to say to grieving parents/families. No, it’s not easier – I’m at a complete loss of words just as everyone else. I guess what I know now is that it is not about what you say – it’s about what you do.

I am where I am today because of the “doers” in my life – the ones who call, email, constantly checking on us….. The ones who meet me for lunch, the ones who just listen…. The ones who know that even though over six months has passed since Anna’s death, for us that’s not a long time….

It was obvious that both Drennon’s and Michelle’s families have a wonderful support system. It is my hope that the “doers” in their lives are as present in the many hard months/years to come as they have been over the past week.

Tuesday, September 30, 2003 4:18 PM CDT
I guess when you’re grieving you kind of cruise along and keep hitting bumps in the road…. This past weekend it felt as if I completely fell off the wagon and landed flat on my face. It all really fell apart on Saturday. I was on my way to the grocery store, but I hadn’t even made it half way there and I was crying so hard I had to turn around. It is the first time since Anna died that I actually had to turn the car around and go back home. I do plenty of crying in the car, but I can usually compose myself enough to do what I have to get done. Not the case Saturday.

I got home and immediately went downstairs to put in the DVD of Anna that was made for her memorial service. It’s a slide show of pictures set to music. When I watch it (I’ve only watched it three times since Anna died) the first time around I only listen as I am sobbing too hard to see anything. The song starts out “Anna my angel, sent down to me from heaven above….” and all I have to hear is “Anna” and I’m gone…. The second time around I can usually see most of the pictures.

On Saturday, I was so distraught that I also decided to watch the video of Anna (I believe the last time I watched it was the day of Anna’s memorial service – it’s been too painful). The last video we have of Anna is about a week before transplant. N. is laying on the couch with Anna on his stomach. He keeps leaning her forward toward his face and she just laughs and laughs. She keeps looking straight into the camera. On Saturday, it was incredibly painful to see her again – I could hear her breathe on the tape….she was moving…laughing…looking…

I’m feeling much better today. As I’m writing this it is still painful, but different. On Saturday, as I was on the couch with my box of Kleenex my heart was just screaming:

It is not enough with pictures!
It is not enough with a few minutes of video tape!
It is not enough with memories!
It is not enough!!!

It’s not enough today either, but somehow the sun is peeking through and I will press on.

Thursday, October 9, 2003 8:36 AM CDT
Today I am spending the afternoon with a friend of Anna's (and a friend of mine, too:)). Heather was Anna's primary nurse at night at Children's. We've gone through a lot together and I'm glad that this day I will spending time with her, especially when I think about what we were doing one year ago today. The day our nightmare started....

I wrote this several months ago.

I’ve been thinking a lot about what we’ve gone through over the past year. We had 6 months and 19 days with our little girl. During that time we experienced every emotion possible – joy, happiness, calm, completeness, fear, hope, despair, deep, deep sadness…. The last two mornings I’ve woken up and my thoughts go to the week Anna was first in the hospital – when she was diagnosed.

It was Wednesday, October 9, 2002. The previous week, Anna and I had returned from a trip to Kansas City. There is a note in the calendar from last year on September 29 – “Anna’s 1st cold.” I had recorded everything: first smile, when her umbilical cord fell off, everything. The note “Anna’s 1st cold” was just plainly stated – a minor thing to keep for her baby scrapbook. On that Wednesday, Anna had acted normal. She seemed a little tired in the afternoon and didn’t seem that interested in eating. She fell asleep on the couch – I propped pillows around her and decided to take the dog outside real quick before N. got home from work. I chatted briefly with my neighbor about how Anna was doing. “Yes, she is doing really well and growing like a weed.” I remember joking with my neighbor saying I better go inside to make sure Anna didn’t fall off the couch (even though I felt very comfortable she was safe where she was). She was sleeping quietly and calmly. I wasn’t very worried about Anna, but remember mentioning to N. that she really didn’t seem to be that interested in eating (nursing is nice that way – you can always tell if the baby isn’t eating!).

Overnight, Anna’s irritability increased. Both Anna and I finally fell asleep in our bed – Anna was sleeping on my chest. I woke up and immediately thought Anna seemed a little warm. She was sleeping peacefully, but seemed warm. When she woke up she had no interest in eating and was very cranky. I took her temperature – I think it was around 101. I called the pediatrician and got an appointment by 9:30 a.m. Our house was a mess. I had been cleaning out my closet trying to move my summer and maternity clothes and get all my winter clothes out. I took a quick shower. I had put Anna in the swing in our room and she was crying, very upset. She just wanted me to hold her. I had called N. in tears. I remember saying that I had to take Anna to the pediatrician because she had a fever through my tears I said "I’m just silly crying – I just hate seeing her so upset." We got to the pediatrician’s office – Dr. Rezabek. Last time we’d been there had been a week after Anna was born. She was scheduled for her two-month appointment the following Tuesday. Dr. Rezabek checked her ears – nothing. He could see no reason for the fever. Maybe it was a bladder infection? Two nurses came in. One held Anna down while the other inserted a catheter to get a urine sample. A few minutes later, Anna’s doctor came in and said that there was no sign of an infection in her urine. He said that he would like for me to take Anna immediately to the ER at St. John’s Mercy. I just lost it. Dr. Rezabek was so sweet. He located some Kleenex and then took Anna from me so that I could compose myself and call N.
I’d never been to St. John’s before. It was busy and the parking lot was full. I ended up having to park far away from the ER and had to walk quite a bit. As I got Anna out of the car, the sun hit her face and I could see tiny red speckles around her eyes. Hours later I would find out that those spots were petechiae – tiny blood vessels at the surface of her skin were rupturing from infection. My knowledge of medicine would go from zip to more than I ever wanted to know within days.

The ER was expecting us. They started Anna on an IV, drew blood and also a spinal tap. After much waiting, we were told that they wanted to keep Anna over night. They were waiting for a room on the Pediatric floor. Not more than 10 minutes later, the ER doctor came back. There would be slight delay. It had been decided that Anna should be put in the PICU and it would take some extra time to get a room. By this point we were so confused, scared and unsure about what to do next. I don’t know what it was that made the doctor decide for Anna to go to the PICU, but I think they got her blood counts back. Very funky blood counts. While in the ER, they started Anna on antibiotics. She ate, but immediately threw it back up – all over me. I had to take my clothes off and the nurses had to find me some scrubs.

We probably arrived in the ER around 10:30 a.m. and finally made it up to the 7th floor and the PICU by two or three. Carla was the nurse that admitted Anna to the PICU. They had to draw more blood and while they got Anna poked again and settled in her room we had to wait in the PICU lounge. I could hear Anna crying. Gil, another nurse, came in and asked if I had a pacifier. I had one, but warned him that she didn’t really like it and I didn’t know if she’d take it. After the trauma Anna had to endure over the next couple of weeks, she became very attached to pacifiers. When we walked into the PICU, Anna was swaddled in blankets lying on her side with a pacifier in her mouth. She looked so tiny and pale in what seemed like a huge crib. We’d called our parents to let them know where we were and what was going on. We told them not to worry. Anna probably just had some funky virus and we were guessing we’d be home by the next day. Almost exactly five months later we would be at a church, holding a memorial service for our little angel.

 Monday, October 13, 2003 11:17 PM CDT
Dear Anna,

I haven’t written in a while, but you know my thoughts and know you are always in them. I know that to others life goes on, but as you know, mine and your daddy’s has just been at a stand-still since we last saw you.

You were perfect. You were wrapped in the pink blanket….finally free from all machines and medications. I will always remember.

Lately, my thoughts constantly drift to last year - last year when you got sick. You were so brave and such a good girl. Your daddy and I could not have asked for more. What hurts so much is all you had to go through. You were too little to understand, yet we had to put you through it.

I keep wanting to say “I am sorry”, but I also know I couldn’t have done more. We did everything, yet somehow it wasn’t enough. I so vividly remember your daddy holding you at the hospital last October, his face in despair and full of tears. All he wanted to do was “take his little girl home.” I remember him saying it over and over….”I just want to take my little girl home.”

Life is awfully lonely without you, Anna. Our arms are so empty, our house is so quiet….

If love alone could cure, you’d still be with me.

Mamma

Saturday, October 18, 2003 8:22 PM CDT
It's been busy around here. My sister-in-law and my niece, Eila, came in for a visit and we kept busy by going to the Butterfly House and the Zoo. We picked absolute beautiful days for both and all three of us had a great time. When we were not out running around, Eila explored our house. We are finding picture frames, books and DVDs in surprising places :). She had a great time, I think, and so did we. It was a good visit.

This weekend was equally busy. This morning N. ran the 5K run arranged by Friends of Kids with Cancer while I walked the 1 mile. I ran in to nurses Jane and Mary from St. John's and it was nice to visit with them. I haven't seen them since Christmas. I've wanted to see them, but going back to the PICU has not been something I've had the courage to do yet. One day, maybe....

I'm going to be "off line" for a few days, but will update when I get a chance.

Hope all is well with everyone and thanks for the entries in the guestbook. It feels so good to see that many of you who've followed Anna for months are still here and also exciting to see new friends visiting and reading Anna's story. It warms our hearts.

Friday, November 7, 2003 9:06 AM CST
Some of you knew that I was heading out of town for a few weeks to go to Florida with my mom. Well, 72 hours before I was supposed to go to Florida, my plans changed. We headed west instead and just returned home yesterday with one new family member. Yes, that’s right – one new family member.

I haven’t written much on this site about our plans of adopting a baby. Well, we finished all the paperwork (home study, etc.) this past August and have been waiting for a call that a birthmother has chosen us to parent her child. Three weeks ago we received that call.

We were told that a baby boy was to be born within four days and for us to be there on his birthday we had to really get organized, quick.

Well, to make a long, wonderful story short, Jack Nathan was born 10/21 weighing in at 6 lbs. 6 oz and 19 ¼ inches. We got to take him home from the hospital two days later and he’s been with us ever since.

We are just absolutely thrilled and it feels so good to have him here with us. The pack-n-play is up and I’ve set up a diaper changing station, but the rest of the baby stuff is still in boxes. Going through Anna’s things has not been something we’ve done – we packed it up back in April and that’s where it’s been since. Now, it doesn’t seem as difficult. We can’t wait to share Anna’s things with her little brother – just like we know she’d want us to do.

We are overwhelmed with feeling by this new addition and N. expressed it perfectly when he told me “I now have a purpose again” and that’s exactly what it is. For months we’ve been wandering aimlessly trying just to stay on the path and now there is a purpose - a clear road to follow. It’s been very healing for the heart.

I’ve added a few pictures in the photo album of Jack. Isn’t he cute?

Thanks to all of you for so patiently waiting for an update. Every entry and email mean so much. As soon as I get settled, I'll get better about writing back.

Anyway, Welcome Home Jack!!!

Karin

Friday, November 14, 2003 9:59 AM CST
I can't believe that it's been a week since I last updated! November 14 - Anna would have been 15 months today. I say that with great sadness, but not with the overwhelming sadness it would have been had Jack not been sleeping next to me in his little swing. Grieving Anna has not disappeared with Jack here, but it has moved it to a whole other level. It's hard to explain and I don't think I even know what I'm feeling at this point. I do know that I'm enjoying every second of Jack. You may think my lack of updating has been because Jack keeps me busy. Well, he's a very easy baby. I think what takes up more of my day is me sitting staring at him. I just can't get enough of him.

OK, he just woke up and now he's in my lap while I type. I don't know how long this will last. He's definitely growing. On Tuesday we took him to the Pediatrician and he was already 8 lbs. 1-1/2 oz.

Remember how I pumped for 6 weeks while Anna was at transplant. Well, yesterday Jack received one of Anna's many gifts - my breastmilk that she didn't get to take.

I've got to go. Apparently working on the computer is no fun at all when you're four weeks old.

Sunday, November 16, 2003 9:27 PM CST
I've wanted to add a picture of Anna in her Chiefs outfit. I just love it and how badly I'd love to kiss those cheeks....

Yesterday N. and I (and Jack, too) went to a memorial service at Children's for all the children who have died in the past year and a half. It was so hard. They showed a video with pictures of all the children. I guess I've been so busy I haven't really had a chance to really feel my pain for Anna this month. Both of us lost it (as everyone else did in the chapel). I saw all those beautiful children on the screen who all lost their lives way too soon. It just isn't right. All of us parents in that room should have our children with us. Anna should be here - as should Corey, Dustin, Jacob, Alexandria, etc....... Ugh! It makes me MAD!!!!

We all got to light one candle for our child. After the service, we went up to get Anna's candle. Someone tapped me on the shoulder and there was Dusty's mom. No, I did not want to see Dusty's mom there!!!! Dusty was at transplant when Anna was there and left to go home in the end of February. He lost his battle this summer.

The pain in that room yesterday was so great. I know that those families in that room yesterday truly understand. They know the incredible fear and pain related to a diagnosis, the wrenching pain when you see your child go through treatment that no human should have to endure. To see your child vomit blood, to see pieces of her gums fall out, to see her sedated week after week, to see her in pain.... In the end, have to make the decision to end her life - to remove life support. To hold her in your arms when she takes her last breath. To be able to close your eyes and re-live every painful moment over and over again. To try to live again. I know they understand.

Right after the service I headed to the grocery store. It felt like a surreal experience....it just didn't fit after the service. People shopping for food on a Saturday night - debating on what to get, arguing with their kids, complaining about this and that. Then I felt alone.

When I returned home, N. and Jack were on the couch. We sat staring at Jack and N. says "this little guy will never know what he's done for us, will he?" No, our beautiful son will never know what he's done for us, but we'll spend the rest of our lives trying to show him.

Friday, November 21, 2003 8:55 AM CST
I don't find the time as often to update this site - imagine that!!! It's a good sign. It means I spend less time letting my mind go places that isn't always good for me - sadly my memory has so many "bad" places it could go. Jack's presence makes both of us think more about the normal baby stuff with Anna. The way she would like certain toys, the way she liked the swing just like Jack does, etc. In some ways, Jack has allowed us to talk about Anna more. Before Jack, talks about Anna would always turn to tears so we'd stop our conversations before they got out of hand. Now, we can talk and our hearts ache, but it's different to talk about the pain when Jack is here.

Yesterday, Jack and I stopped by Dr. Rob's. None of the docs were there, but I showed off Jack to the rest of the staff. Always tugs at your heart when you see the children, most bald, in for their treatments. Some up playing having fun, but others too tired, too sick.... Makes me think about how Anna never did lose her hair. With all the chemo she got, it's amazing that she never did lose it. I look at the pictures now (including the one above) and she has all that hair. It's like she held on to it so that we now have pictures of her where she looks pretty normal (if you look past the puffy face and tummy). Had she lost it, pretty much all of her pictures would have been of her bald - it would have been hard to see - a constant reminder of chemo and her disease. Just one of Anna's many gifts, I guess. She was amazing and will always be.

Jack is one month today. I can't believe it and can't believe he is getting so big. One of the many nice things about adoption is that I've really experienced and been completely "aware" during this first month of his life. Not having to recover from labor and delivery and not having breastfeeding drain you makes a huge difference. It's a lot of fun.

Well, there is laundry to do. Believe me, it's a lot more fun now when there once again are tiny clothes to fold. I've missed them.

Wednesday, December 3, 2003 7:30 PM CST
Obviously I am much busier now a days and updating this page is not as easy as it was - thankfully.

We had a very nice thanksgiving with my sister, brother, sister-in-law and nephew. As we went to bed Thanksgiving Day night, N. turned to me and said that he couldn't help looking at the baby swing and think of last year's thanksgiving. It was just me, N. and Anna. She was in a great mood and we have some sweet pictures from that day.

I actually did some Christmas decorating around here earlier in the week - something I was not planning on doing - before Jack. I did something new this year - I decorated one tree for Anna. On it is her ornaments she received last year and then just angel ornaments that I've collected since Anna died. There aren't too many ornaments at this time, but as the years go by I'm sure my angel tree will grow. It looks pretty (even though it's a little hard to see in the picture) and makes me think of Anna - not like I need any reminders, but you know what I mean.

Until next time.... As always, thanks for checking in on us.

Monday, December 8, 2003 4:49 PM CST
Remember when I wrote about the day Anna first got sick. How we woke up in the morning and she felt warm and had a temp around 101. How I called N. in tears telling him Anna wasn't feeling well and had to go to the doctor. How I took her to the pediatrician and that he sent us to the ER….

Well, here's what happened Friday morning. Jack woke up and he felt warm to me. It was around 8:00 a.m. and while I was feeding him he still felt so warm. Finally, I decided to take his temperature just to be sure - it was 100.4!! I took his shirt off – still not believing he actually had a fever. Twenty minutes later it was 101.something…. I cannot explain what I was going through. Here my baby is six weeks old (Anna was eight) and he has a fever that I saw no reason for. I call the doctor and when they hear his temp. they don't even ask me to come in, but I get the dreaded words "we'd like for you to take him to St. John’s ER, right away." I call N. and once again I'm in tears telling him that something is wrong and I have to take our baby to the ER.

N. meets us at the ER and already has us registered. We are led down the hall and as we approach the pediatric ER I feel a tightness in my chest – please don't put us in the room we were with Anna. We end up in the room right across from Anna's. The doctor comes in and examines Jack and gives us the run down – they'll have to do a urine test, a blood test (CBC) and a spinal tap. I lost it! While I'm crying I'm trying to explain to the doctor how a little bit over a year ago we were going through this with our daughter and how she is now gone. We were just numb (and very angry too – why our baby AGAIN?). By this point Jack's temperature is over 103. The nurse can't get the IV in and finally they have to call some NICU nurses to come down. They want to start Jack on antibiotics ASAP.

His urine test comes back fine, his blood work is fine (not perfect, but as expected for a person who is not feeling well – we asked for specifics – what's his platelet count?, what's his white count?, etc.), but there are white blood cells in his spinal fluid. Thankfully, the ER doctor is wonderful and so understanding of our situation. He now thinks that Jack has Viral Meningitis (not the dreaded Bacterial kind). He's not sure so we have to be admitted and Jack has to start antibiotics.

So our day starts out awfully similar to last year, but thankfully things take different paths fairly quickly. I think that both of us started to relax some – at least we knew what was wrong (or at least a strong indication). Jack got Tylenol, his fever went down, and he was eating well. Both of us were dreading making that trip upstairs. Neither of us has been on the Ped. Floor since Anna was there. Thankfully, we were not going to the PICU. While we are still in the ER, Dr. Rob stops by. I guess he ran into our pediatrician. As soon as I saw Dr. Rob, I said "this is a purely social visit, right?" Dr. Rob said he'd already decided he wasn't even going to look at Jack's lab work. :)

So to make a long story short, we were put in a private room as far away from the PICU as you can get. Nurse Jane from the PICU stopped by and a lot of the nurses knew who we were. Even Dr. Sample from the PICU stopped by and said if we needed anything that he's just down the hall. We felt very well taken care of. I spent the night with Jack, but didn't sleep well. I thought of Anna a lot. I looked down the hall toward the PICU, but never made it over there – maybe another time (just to visit, that is). We ended up going home yesterday afternoon and are not planning on going back to the hospital for a long time. It feels so good to be home.

Being at St. John's was weird. It was a mix between the very familiar (having Jack hooked up to an IV and maneuvering with his line felt oddly normal) and the very, very scary. I'm still emotionally drained from worrying about Jack and from reliving so many memories of last year, but we made it through.

When Jack finally got home yesterday afternoon and while he was still in his car seat, he looked me straight in the eye and gave me a huge smile. His first smile!! He was as happy to be home as we were.

How we love this little guy!!

Tuesday, December 16, 2003 3:31 PM CST
UPDATE: Dec. 21 - Today Jack is two months.

First of all I want to start off by saying that Jack is doing great. Just now as I wrote that the music from Jack's acquarium-thing that's in his bed started playing (I'm in the basement and listening though the monitor). I guess he hit the button all on his own (I'm sure it was by mistake)!! I bet it surprised him.

Today, Jack's Mormor and Morfar are coming to see him and he's very excited. Gave me two big smiles as I spoke about it this morning :).

I've decided to put some happy pictures of Anna on the site even though they are not the pictures that keep flashing in my mind. I'm hoping that posting them here will remind me of a happy Anna, not the sick one I keep thinking of. I must say that this is not an easy time for us. December 13 was a horrible day. My parents were here, but we had to call N's parents into town and also my brother and sister as we didn't know if Anna would make it through the day. December 13 is St. Lucia day in Sweden, but I don't know if it will ever be the same for me ever again. We spent 15 days in the PICU at St. John's with Anna intubated for 11 very long days. I took a lot of pictures but it makes me sad to look at them. The picture we took on Christmas Day as a whole family - me and N. and little Anna thankfully off the ventilator, but still with a feeding tube in. My dad and I spent the night Christmas Eve in the family lounge which was also the place we opened Christmas gifts earlier in the day with the rest of the family. I guess all in all Christmas will be different from now on.... We miss Anna so terribly.

I just think that Christmas is so hard for all of us parents who've lost children. I visit so many web sites regularly and the feelings are the same wherever I go - the holiday season is hard and many of us would gladly just take a break from life and come back in six weeks or so....

But for now, all we can do is take the days as they come and believe me when I say that we need no reminders to hug, kiss, cuddle, and love on little Jack. Without him I'm not convinced N. and I would even go home for Christmas. We'd be tempted to just stay here by ourselves and forget about the whole holiday season.

But he is here and we are so thankful that he joined our family when he did - the timing couldn't have been better....

Merry Christmas!!

Friday, January 2, 2004 2:58 PM CST
It's been way too long since I last updated. I saw this morning that this site has had 10,000 hits and here I am not even updating....

Well, as you can imagine, it's been very busy. We spent Christmas with our families and really had a nice and relaxing time. Much better than we had imagined three months ago that's for sure!

We also saw our friends who lost their Drennon in September. It's weird, but when I'm around others that are grieving, who have lost children, no words are needed. On the outside, we are laughing, talking.... but we know the pain and sorrow they feel on the inside and they know ours. It's a common bond that somehow makes you not feel so lonely. It gave me comfort to see them and I hope they found comfort in being with us. I wish we lived closer together....

I could go on forever on what it feels to grieve and miss your child, but not today.... Just know that months have passed and the pain may be different for us, but Anna will always be missed and I will cry for her absence for the rest of my life - you never get over losing your child. I long to hold her and feel her once again.... Love you Anna!!!

Jack is getting so big. Last night he slept from 11:00 p.m. until about 6:00 a.m. I woke up at 5:25 a.m. in a panic and ran into his room making sure he was OK. I'm sure in my frantic state I am the one who actually woke him up. He of course was sleeping peacefully. He is smiling a lot and he "talks" up a storm too!

Friday, January 23, 2004 10:05 AM CST
Yes, I'm still here - just finding it a little harder to get online to update :). You know how women who are pregnant go through that nesting stage. Well, I've decided that for adopting moms that all comes after the baby arrives. Our house has gone through quite a transformation and has been completely de-cluttered. It feels great. I still have to go through the kitchen, my closet and the storage room and then it's all cleaned out. We've created a large give-away-pile which feels good.

My next projects will be to start Anna's scrapbood (no, I never even got it started) and start on Jack's too. I've got to keep on top of it this time.

Jack is doing great. Taking his morning nap right now.... We took him to his 2 month appointment on January 9 and he weighed 14 pounds 1 oz and was 23 inches (he was 6.6 and 19-1/4 inches when he was born!!) so he is obviously not being starved!!! He smiles and is doing a lot of cooing and "talking." He sleeps through the night and is just a very pleasant baby. I love it when we're out shopping and I glance down at him in his car seat and he's giving me this big smile. Is there a better feeling? He's so cute.

Our thoughts have also been with Anna as it is now one year since she went to transplant. She went in on January 20, 2003. It brings back an incredible amount of pain.... In some ways I feel that getting through the next few weeks will be a challenge. Transplant was so horrible no words can even begin to explain. I've read through some of my entries from last year and I don't know how I could be so positive. But I guess when you're right in the thick of it you just do what you have to do. I had to look for the positives....

I found this poem on the Internet and it just kind of fits right now.

My Mom is a Survivor
(by Kaye Des'Ormeaux, October 15, 1998 Dedicated to the mothers who have lost a child and have somehow survived)

My Mom is a Survivor,
or so I've heard it said.
But I can hear her crying at night
when all others are in bed

I watch her lay awake at night
and go to hold her hand.
She doesn't know I'm with her
to help her understand.

But like the sands on the beach
That never wash away...
I watch over my surviving mom,
who thinks of me each day.

She wears a smile for others...
a smile of disguise!
But through Heaven's door I see
tears flowing from her eyes.

My mom tries to cope with death
to keep my memory alive.
But anyone who knows her knows
it is her way to survive.

As I watch over my surviving mom
through Heaven's open door...
I try to tell her that angels
protect me forevermore.

I know that doesn't help her...
or ease the burden she bears.
So if you get a chance, go visit her...
and show her that you care.

For no matter what she says...
no matter what she feels.
My surviving mom has a broken heart
that time won't ever heal.

We are thankful everyday that Jack is here - our ray of sunshine that not even the darkest cloud can stop from shining through!!!

 Friday, January 30, 2004 12:40 AM CST
January 31, 2003 was the day - Transplant Day. The beginning, the future, the hope, the cure.... But instead, I sit here a year later not celebrating that we made it to one year post tranplant, but missing my girl - still not quite grasping that she is gone.

I was going to add some pictures from last year from transplant day and after transplant, but after looking at the pictures I've decided I will spare you. Transplant must just be one of those medical treatments that are one of the worst you can endure. Anna looked nothing like herself. What did Anna look like? Well, imagine filling a baby with so much fluid that she expands to twice her size causing her skin to be tight and shiny then throw her under a truck to get her all brused and full of sores....

How I wish it had all turned out differently. I should be sitting her with a 1-1/2 year old bouncing around bugging me for attention AND I should have my little 3 month old sleeping in his crib. That's the way it should be...one girl and one little boy.

But it's not....

Saturday, February 14, 2004 4:15 PM CST
Happy Valentine's Day! Never been that big into Valentine's Day, but anyway....

Last year we of course were at transplant and I hung a bib on Anna's crib that read "Baby's First Valentine." Anna also turned 6 months. Not really in the mood (plus I don't have the time) to get into all that today. I went on the web site for HLH yesterday and sometimes I read the web lounge for bereavement. A man had signed who'd lost his daughter 8 years ago to HLH. She was 10 months. At the end of the entry he wrote about grieving his little girl and as encouraging words to the rest of us missing our children who have left us way too soon - he wrote something like "the lump in your throat and the pain will go away." It was nice to read and made me feel better all day.

Wednesday, February 25, 2004 7:47 PM CST
Update 3/1/04 Made three Anna blankets today. Kept me really busy today

I could go on and on about my feelings about facing the anniversary of Anna’s death next week, but I will avoid it. I will bury my head in the sand and push it out of my mind. I just don’t want to think about it and have decided that re-living it again by writing about it is not worth it. I’m sad and I miss Anna.

Several months ago, I had mentioned something about Anna blankets. I never did get around explaining what that was so here goes. While Anna was sick and right after she died, a lot of our friends had babies – many their first. After Anna had died, I could not make myself go and buy a baby gift – especially not clothes, but still wanted to do something.

When Anna was in the hospital, she received many donated blankets. She received her first at St. John’s when she was diagnosed. During Anna’s illness and especially after she died, I felt that I somehow wanted to give back. One day I was at Hancock Fabrics and saw the fleece blankets they had made. I bought some fabric and went home and made a blanket. It turned out really cute and I thought this would be a great baby gift. I can’t remember when this was, but soon after I was driving back to Kansas City to visit my parents. On the way I kept thinking about the blankets and if there was any way to honor Anna though these blankets. Here is what I came up with.

The approximate size of a baby/child blanket is 60 by 45 inches while an adult size is approximately 60 by 72. They are made of two matching fleece fabrics and each blanket comes with an embroidered tag that reads “The Anna Blanket.” (In my mind I could picture people having these in their homes and saying “where is the Anna blanket?”). The proceeds from the sale of these blankets go to more fabric for more blankets that I donate to local hospitals. Each blanket sold also comes with the following note:

Anna Rebecca was born on August 14, 2002 to parents N. and Karin. At the age of eight weeks, Anna was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a very rare blood disorder. Anna received chemotherapy treatments and eventually a bone marrow transplant. She earned her angel wings on March 4, 2003, at a little over the age of 6 months. Her parents are incredibly proud of her fight and miss her terribly.

Anna’s life was short, but not in vain. She touched so many….and gave her parents much joy. It is Karin’s hope that these blankets will give comfort, hope and peace. That it will remind you of the blessings in your life and the miracle of life itself. Karin makes each blanket out of love and in memory of her beautiful baby girl. The proceeds from the sale of these blankets go to more blankets for donation to local hospitals.

For more information, please email Karin at
theannablanket@yahoo.com

The cost for the blankets is $30 for a baby/child size and $45 for an adult size. I can usually find fleece for one baby blanket for around $18 so for three Anna Blankets sold I can usually make two for the hospitals. Of course, I always look for fleece on sale so that I can donate more. Each blanket is different as I don’t “stock up” on fleece, but buy as people request them. The majority of the blankets I make are for babies and I usually just ask if it’s for a boy or a girl and then I hunt for appropriate fabric.

This has been a great and rewarding project for me. I love going out hunting for fabrics and I enjoy spending the time making the blankets – I always think of Anna. Hopefully, a sick child out there is uplifted by a colorful, soft and warm blanket and I hope that our friends that have received one so far are using and enjoying them and that once in a while the words “where’s the Anna blanket” are spoken.

I’ve added some pictures in the photo album of the Anna Blankets. So now you know what Anna Blankets are – another of Anna’s many gifts. Of course, I would love to make more Anna Blankets so if anyone is interested just drop me an email.

Sunday, March 7, 2004 1:36 PM CST
Thank you for all your cards, emails, guestbook entries and phone calls on March 4 (and around that date). In some ways I think the day was harder than I thought it would be. I'd been feeling good all week, but the actual day was hard even though we kept busy and as all 364 days prior to March 4, 2004, we survived and the day passed.

We were both thankful that Anna died in the morning as anticipating that exact time was hard and at the exact time it was somewhat overwhelming.... but as said - we made it.

Jack, of course, was the hero of the day. We took him to his 4 month appointment on Thursday (I figured we might as well do something "normal" that day). He now weighs 16 pounds 3-1/2 oz. and is 26-1/4 inches long!! He also received more vaccinations, but as last time no reaction (except, of course, plenty of tears). He was in a great mood all day and didn't complain as we dragged him across town for some furniture shopping. We got lots of smiles and cuddles and he made our day (as he does everyday!).

Jack and I are heading to sunny Florida in a couple of days and as Morfar's computer seems to be out of commission I don't know when I will be able to update or check-in again. If you don't hear from me, expect pictures from the beach in about two weeks.

Monday, March 29, 2004 4:01 PM CST
We've been home for a whole week tomorrow and I am just now getting a chance to sit down and update. Jack keeps me busy.

Our trip was wonderful. Each morning (or pretty much) started out with a walk on the beach with Jack in the stroller. Almost every day we saw dolphins - very neat! I'm not sure Jack really saw the beach as he seemed to be asleep before we even reached the beach. He swam in my parents' pool twice and we think he enjoyed it (didn't laugh, but didn't cry either). All in all, it was a perfectly relaxing and much needed break from the colder weather here in St. Louis.

Sanibel is a very special place to our family. It is the place that we agreed to spread Anna's ashes. We have not done this yet (her ashes are still in a small, pink urn in our dining room) and who knows when we'll be ready.... It gives us comfort to have her remains here for now. Anyway, Sanibel is also a very special place for our friends the Maydens in Phoenix and our friends Joe and Chris here in town. After Anna died, they bought a stone in memory of Anna outside the Sanibel Chamber of Commerce. The stone reads "In memory of Anna, our little angel." I got to see the stone for the first time on this trip. I've added some pictures in the photo album.

Thanks to all of you who have ordered Anna Blankets. I've kept busy and am really enjoying myself. I've already made two this week (I know, it's only Monday) and have a few more I need to do this week. Last week I drove around town looking for fleece. I think I dragged Jack to at least 4 different fabric stores. Believe me when I say that Jack was ready to head home after the last store. Before I went to Florida I dropped off five blankets at Children's and I have a few more I need to make and donate so thanks again for your orders. Each blanket we received for Anna while she was in the hospital meant so much to us so I hope these blankets do the same for families out there that are dealing with a sick child.

So what else is new? Jack is growing and doing new things each day. He is now rolling over from his back to his stomach (but seems to have forgotten how to roll from his stomach to his back:)) He is now eating solids (which I've been busy steaming, pureeing and freezing) and is generally just getting bigger by the day. He's absolutely adorable and has a nice, sweet personality. His smile makes my day.

Thanks for checking in with us!

Sunday, April 18, 2004 9:07 AM CDT
A quiet moment - finally. It's been crazy....tons of fun, but crazy. We've been out of town (again) and I just now feel settled in from our trip to Florida in March.

I dropped N. off at the airport this morning and it'll be just Jack and me (and "Crazy" K.C. - the dog - of course) for the week. I'll try to get caught up on some stuff around the house and also have a few Anna Blankets to catch up on. After this week I think my count is 40 blankets. How neat is that??? Thanks to all your orders out there!! I'm becoming a regular at the fabric store - soon they'll know me by name :). I have created a brochure that explains the blankets and it also includes an order form. Just drop me an email if you're interested.

Jack is doing great growing and changing by the day. He can now sit up which is fun and he also rolls over a lot. Putting him down for a nap is a trip as he keeps on rolling over and I keep having to go in and "rescue" him. Yesterday, he actually fell a sleep on his tummy which worked great, but he usually starts hollering when he ends up on his tummy as he is not used to sleeping that way yet. It's all so much fun. I've added a new picture of him in the photo album so you can see how big and, if I may say so myself, how cute he is.

Jack's adoption date is set for May 10 - the day after Mother's Day. On Jack's adoption day he will be 6 months and 19 days. Why do I mention this? Well, on the day his beautiful big sister died she was exactly 6 months and 19 days. Gives you goosebumps, doesn't it? I love you Anna.

Friday, April 30, 2004 8:11 AM CDT
Good morning! It's going to be busy in the next week before we head to Colorado so I figured I'd better do a quick update.

Yesterday, I took Jack to the pediatrician for his 6 month appointment (I still can't believe he is 6 months!). He now weighs 18 lbs. 12 oz. (8,220 g) and is 28 inches (71 cm). Not a little one as you can see. The pediatrician said as she walked in that he is "obviously not missing any meals." He also got two more shots.

Poor guy got completely over-stimulated yesterday from going to the pediatrician and then going to Walgreens to pick up his prescriptions (which took almost an hour!). We had a very hard time getting him settled for the night. OK, so a very "hard time" getting Jack settled means five to ten minutes of crying (we're used to just putting him in his crib and leaving the room). He did settle in fine and slept until 7:00 a.m. and woke up very happy.

So that's the Jack update. We're doing well. Keeping busy. Hearts still breaking from not having Anna here, but with time you just learn to live with the pain. Not a moment goes by that we don't think of her. Like I said, you just learn to live with it....

One of Anna's BMT buddies, Jacob, passed away on April 9 and we are just heartbroken for his mommy and daddy. The heartache, the emptiness, and the sadness that sometimes gets completely overwhelming - oh how I wish they didn't have to go through it.

I will leave on that note. Remember to hug your kids and be thankful for every moment. Be thankful that your kids cry, act out, get vaccinated, laugh, soil their clothes, get a cold and recover, and all the wonderful (and not so wonderful) things kids do. Why? Because they are here to do it - because they can!

We sure do. This morning N. woke me up early and told me to go look at Jack sleeping in his crib. Why? Because he said Jack looked so cute and he "figured it was worth waking up to see." It was.

Friday, May 7, 2004 8:28 AM CDT
Happy Mother’s Day (A couple of days early)!

In October, 2001, my mom was diagnosed with breast cancer. She finished treatment in May 2002. In October 2002, my daughter was diagnosed with HLH. My mother and the one who made me a mother….

Watching my mom deal with cancer is one of the reasons I think I was able to emotionally handle Anna’s illness. She took it all with such stride and without a “poor-me” attitude. I remember her saying that “this is just something we have to deal with.” She took her chemo treatments without complaint (just like her grand-daughter did).

Thankfully, my mom is fine. She was the rock for us when Anna was at transplant. We have talked about it many times – we couldn’t have done it without her! My mom is a nurse by trade so when things were bad – really bad – and we no longer had the strength to be in Anna’s room (only happened a few times, but it happened) my mom was there. I sometimes struggle with the fact that I left Anna at some very critical times (but watching your daughter being “bagged” is sometimes too much), but I find comfort in knowing that her Mormor was there.

Anyway, I do not mean for this to be a sob story. What I really want to say is Thanks MAMMA!!! We love you.

I know I am completely embarrassing my mom drawing this much attention to her, but you know how it is – sometimes you just want to scream it from the mountain tops for the whole world to hear that your mom is the very best!!!

I will celebrate this Mother’s Day with Anna in my heart and Jack in my arms. Growing up, I remember asking my parents why there wasn’t a “Children’s Day” since there was both Mother’s Day and Father’s Day. The response I always got was that “every day is Children’s Day.” Well, for me, every day is Mother’s Day

Thursday, May 13, 2004 9:41 PM CDT
I just re-read what I had written in my previous entry (for those of you who missed it, see journal history). It starts out with saying that my mom was diagnosed with breast cancer in October 2001 (by the way, that and 9/11 was what really made us decide to start a family – I remember referring to Anna as a”9/11-baby” before she was born) and that Anna was diagnosed with HLH in 2002. We all wondered what would happen in October 2003.

Well, last summer my friend, Kim, came to see me. She drove all the way from Kansas City just to spend the day with me (yes, that is just the kind of friends I have!). Kim told me about this angel she had bought for me – the Angel of Happiness. She was going to bring it, but then decided to wait. She was going to mail it to me in October. She said that October would be the month of happiness in 2003 – not the heartache of previous years.

I wondered if Kim would remember, but of course she did. Around October 3rd or 4th, the angel arrived – the Angel of Happiness. Little did we know that at the time a wonderful, loving birthmother was carrying a child – a child she wished for us to raise. On October 21, 2003 happiness once again joined our family.

This past Monday, May 10, 2004, Jack Nathan officially joined our family forever (even though in our hearts he’d been ours since that wonderful month of happiness – October 2003). It was an emotional day and through tears (of love and joy) I answered the judge’s questions. Of course I will care and love him for the rest of my life!!!

Throughout the hearing, our Jack stood up in my lap and smiled at the judge (yes, he gave her his wonderful, contagious grin the entire time). Right after the judge finalized everything, I turned my head to give Jack a kiss. At the same time, Jack turned his head to me and with his sweet mouth wide-open we kissed. You know those baby kisses – they are absolutely the best – wet, warm, sweet….

As I write this, I am overwhelmed by love for my son - this beautiful child that was given to us out of love. I was cleaning the kitchen earlier this afternoon, Jack was on the floor on a blanket (an Anna Blanket I might add) playing with a toy. As he was making noises and giving me one of his smiles every time I looked at him, I was amazed by the utter joy I felt – a carefree, wonderful joy…. I have this wonderful son – wonderfully healthy son. Not one moment passes that I take this for granted.

Thursday, May 27, 2004 4:02 PM CDT
Last night weather around here was pretty bad. we had just finished dinner when the sirens went off. We turned the TV on and learned about the tornado warnings. To make a long story short, Jack, the dog, N. and I end up in the basement. As we walk into the basement and sit down I asked N. "do you have Anna?" No, he answers and goes back up the stairs. He comes down and I asked if he "got her." He patted his jean pocket and said "Anna's in my pocket."

It was one of those conversations that seemed so natural and normal around here, but yet when N. answered "Anna's in my pocket" it just kind of hits you. We shouldn’t have her remains in a tiny urn that fits in a pocket!!!

Wednesday, June 9, 2004 7:40 AM CDT
Mark your calendars -- The 2nd Annual Anna Memorial Golf Tournament will be held on Monday, August 9, 2004. Last year was a huge success and the final $ count was $30,000 for the Histiocytosis Association. What is exciting is that research has been moving in the right direction in regard to HLH. This past year a new gene mutation has been identified which can prove that the disease is hereditary. Also, Anna was treated under Protocol 96 - as of January it is now Protocol 2004.

There are still more gene mutations that have to be found and sadly children are still dying from complications of HLH so we can’t give up yet!!

Registration forms for the tournament will go out toward the end of the month. Let me know if you want us to send you a registration (note – if you received a registration last year, you’ll receive one this year too so no need to email me).

We are also looking for donations for our raffle. Please drop me an email if you are able to help!

As always, thanks for checking on us! We are doing well. Jack is doing great and growing and changing each day. Last night he screamed as loud as he could “na na na na” – I guess he was one consonant off, but hey it was cute!

Wednesday, June 23, 2004 7:11 AM CDT
For those of you who have been reading Anna's site know that bone marrow donation is key to giving children like Anna a chance at life. I hope all of you are registered donors!

I can't imagine what it would have been like had we not found that perfect match for Anna. What if she had died because there was no match? Sadly, children and adults die because a match is not found or they are forced to use a match that isn't "perfect." Could you be a perfect match that has yet to be registered? I'd really like to write "shame on you", but I always try to keep this journal positive and friendly so I won't....

Through this web site, I've come in contact with several other families whose children are dealing with life threatening illnesses or with, as we call them in our "circle", other angel families. Right now one of those families is trying to save their daughter's life. Kailie has been dealing with Leukemia over the past few years and finished treatment at the end of 2003. In the past few weeks, she has not only relapsed with Leukemia, but is now also battling HLH. She is heading to transplant and needs a MATCH.

Could you be Kailie's match? Don't miss an opportunity to save a life. If you live in St. Louis, there will be a drive this Saturday.

National Bone Marrow Donor Registry Drive
Saturday, June 26
9:00am - 6:00pm
America's Center, St. Louis MO
Cost: $0.00 !!FREE!!

Or if you are not in St. Louis, call 1-800-MARROW-2 or visit www.marrow.org

Tuesday, June 29, 2004 7:25 AM CDT
I can't help but think about how different it is to care for a healthy child as opposed to a very sick one. When Jack first arrived it was very weird as I felt I had so much time in the day even though I had an infant. I quickly realized that what was normal with Anna is not normal with a healthy child. It is amazing now how much time was really spent caring for her - doctors appointments, medicines, etc....

I, of course, have also realized how delayed Anna was with her large motor skills. There were some things Jack could do at 4 months, that Anna wasn't even close to doing. On the other hand, she was developing much faster socially (her entire social scene were adults - doctors and nurses).

Anyway, the contrast is huge. I always think about the difference when I give Jack a bath at night. He first of all gets to sit in the tub and splash as much as he wants to (which Anna never got to do). When he is out of the bath I put him on a blanket on the floor to dry him off. He's ALL OVER - rolling around, trying to get his toys, etc. It's such a challenge getting a diaper back on him - I'm always laughing.
What I remember of giving Anna a "bath" is her laying in a hospital crib - pretty much sedated and sleeping. As I began giving her a bath, she'd usually vomit from the movement (I would always know this was coming by her high-pitch scream right before). I'd give her a sponge bath (her eyes usually remaining closed). The nurse or my mom would get warm blankets to cover her up while we were bathing. Only one leg or one arm would be exposed at a time. I'd have to be careful around her neck as it was sore and skin was peeling from the swelling.... My mom figured out that the best way to dry it off was with the oxygen line. The nurse would come and "inspect" Anna prior to her getting dressed. Any more bruises, sores? I'd spread her clean sleeper out on one side of the bed and with IV lines and all I'd carefully lift her pretty much limp body and place it on the sleeper. She'd be clean and dressed.... Not the kind of bath a six month old should have.

Well, my little sunshine here on earth is calling my name (crying that is!). Got to go see his cute smile.

Saturday, July 10, 2004 8:54 PM CDT
I don't update as often as I used to. I don't know why. Most of the time I just don't know what to say. It gets old. Time goes by and I miss Anna. As a grieving mom you realize that this is what life will always be. It will be good - there are happy moments, but you are not complete - and never will be. I sometimes get the impression that others who have not lost a child assumes that life gets back to normal - it doesn't. You don't ever "get over" losing a child. I loved Anna with my entire heart and when she died my heart went with her. As time has passed and especially with Jack's arrival, I have slowly pieced my heart back together again. BUT, it is not the heart it once was - one piece will forever and ever be with her. This is where I want it to be.

Jack is our light, our sunshine, our happiness. Just as with Anna, I have all of him memorized, etched in my mind. His eyes, smile, feet, toes, fingers, bellybutton, hair, smell and sounds.... Not one thing goes unnoticed. I am so incredibly thankful for Jack.

Well, before I sign off, I wanted to share something I found on the web a few days ago. A woman who lost her daughter wrote this and I feel the words could have been my own. I cried as I read this. Keep in mind as you read this that the climb "out of the valley" is not a steady one. You work hard and get a few steps up, but it's slippery and before you know it the rocks and gravel give and you slide backwards. It's a climb of tears and hard, hard work.

"On December 2, 1990, my daughter, Sherri, died -- but, we both entered the 'valley of death'. She remained, and I was left to make the most difficult journey of my life. I really don't know exactly when it happened that I chose to live and go on, but I do know it took all my strength, mentally and physically, to begin my journey out of that valley.

Her death left me broken. It took my being, it took my trust in life, it took my innocence, it took my white picket fence, it took a part of my husband, it took pieces of my surviving daughter and her family, it took my spirit, it took my naivete, it took my passion, it took my enthusiasm, it took my belief system, it took some of our friends, it took some family members, it took my concentration, it took my energy, it took my hope, it took my happiness, it took my celebrations, it took my joy, it took my patience, it took my traditions, it took the order from my universe, it took my dreams, it took my sleep, it took my peace, it took my laughter, it took my future, it took a river of tears, it took my faith, it took my God...

Some thought it took me too long, too many years to make my journey. Some thought I'd emerge from the 'valley' the same old me. How could I have? It ravaged my whole being -- it kept my child! Some gave up too soon. I wished they understood. I wished they knew what I and we were going through. I hope they never do....

I did eventually emerge from that valley a 'new' me. A 'me' that now owned a more defined set of emotions and belief system. I was drained, I was tired, yet, I felt somewhat stronger. I was more tolerant, I was less judgmental, I felt I was more cynical. I was more frightened, I was sadder, I became more spontaneous, I was very aware of the moment, I felt more vulnerable, I became more understanding, I was more quiet, I was productive, I still felt depressed at times, I was less optimistic, I felt 'duped', I was angry, I was more easy-going, I was planning again. I was hoping again, I was more loving and appreciative of life, I was more emotional, I was more sensitive, I was more sympathetic. I was more creative, I was more reality-based, I began re-defining a new belief system. I was more spiritual. I was now confronting all the changes that had taken place in me and in my life during this journey, and I was extremely aware of how fragile and short life REALLY is.

I believe that it was Sherri's spirit and love of life that pushed me to continue my journey. I pained every moment of every day, of every week of every month, for many years after her death, but I eventually made it out of that 'valley' -- reflecting daily on my daughter's zest for life, accepting my decision to live and go on, and finally reconciling her death."

Wednesday, July 28, 2004 9:25 PM CDT
I thought of one more thing over night (told you I'd think of all things to say). You remember how I wrote that Anna was 6 months and 19 days when she died - Jack's exact age on his Adoption Day. Well, I realized something else.... Eight (8) months after Anna died, Jack arrived - so that makes them 14 months apart. 8 - 14 --- Anna's birthday.

My updates are not coming as often anymore, are they? It seems one little guy is keeping me busy....

I've been thinking about this site for the last couple of months and have decided to close the site by the end of September, if not sooner. I have to give my self some time to get used to the thought so I'll give myself two more months.

For so long, just the thought of closing this site has made my stomach hurt. I guess in some ways it feels so final - like I am letting go of something of Anna's. But on the other hand I know that Anna knows where she is - tucked safely in my heart forever.

This site has truly been a life-saver for me. It's been a way for me to share Anna with all of you and also been a way for me to process my grief these past months. Journalinig is incredibly therapeutic, but what has been a huge difference for me has been that you have been reading. I don't think it would have been the same had I just been writing for myself. I am grateful that you have been here for me. Thank you.

I took Jack by Dr. Rob's/Bob's today. I visited with one of Anna's nurses, Judy. I told her that I will never forget how each time we came in and before Anna would start her treatment, Judy would pick Anna up and just hold and cuddle with her. "I have to do this first" she'd always say. I told Judy that I can just see it in front of me and how much it meant to me that she did what she did. Judy said she'd never forget either. It feels good to know that others won't forget my little girl.

The closing of this web site is a small part of the whole picture. Tears still flow in this house and our hearts still break, but I'm ready to let go of this small part. Jack needs me and I want to spend any free time focusing on him. I'll probably continue to write and journal (hard to stop after two years!), but it'll be just for me and for Anna.

This won't be my last entry - I'll probably think of tons of things to say now when I only have two more months to go (of course, I can change my mind!). There is one thing you could do for me, though - sign the guestbook. I would just love to see who's been visiting. You do not have to write anything - just your name. It would just be a wonderful thing for us to have as the years go by.

Thank you again for so faithfully visiting Anna's site.

Karin

Sunday, August 15, 2004 8:14 PM CDT
As everyone gathered for the Second Annual Anna Memorial Golf Tournament, we were once again humbled by the loving support for our family as well as the desire of each player, sponsor, and volunteer to help others in our situation. I couldn’t hold back the tears as we got closer to tee-off. Nothing can take away the pain of losing a child, but there are ways to comfort and soothe the ache in our hearts - the support we are shown at the Anna Memorial is a perfect example and we are tremendously grateful.

As you all know, August 14th is Anna’s birthday and understandably a very difficult day for us. Thankfully, we are still on a "high" from the tournament which makes the day much easier to face and we thank each one of you for helping us through.

Of course, we are equally thankful for the financial contributions to help find a cure for HLH. Last year we were able to make a donation of $30,000 to the Histiocytosis Association - never in our wildest dreams did we think we could match that again this year. We’re overwhelmed, thrilled, and incredibly thankful that this year a contribution of $34,000 will be made to the Histiocytosis Association!

A huge "Thank You" goes out to all the players, the sponsors, and the volunteers!

We headed to Arkansas to be with friends after the tournament so we just arrived home today - pretty beat from a couple of weeks of busy, busy, busy....
It's good to be home.

I was saddened to learn on our arrival home that Kailie, who I've mentioned in previous entries, has been taken off life-support. This is not the way it is supposed to be.... Kailie will soon be flying free, but my heart aches for her family who now have to face each day without their girl.

Thursday, August 26, 2004 9:21 PM CDT
Greetings all! I thought I'd better get an update in before the weekend. N's been out of town and will return tomorrow so family-time will be higher on the priority list than computer-time in the next few days (well, it always is, but you know what I mean....)

I thought I'd get caught up on stuff around the house while N's been gone. I especially wanted to get caught up on some Anna Blankets. Last week, my mom and I dropped off five blankets at Children's. Since then, I've made a few more putting me at a count of 64 Anna Blankets. Not bad - if I may say so myself. One part of our basement has now been "taken over" by Anna Blankets. I bought a cutting table as well as a sewing table and as you will see from the photo album I have my work cut out for me. I couldn't help but laugh as I saw the pile of fabric waiting to become Anna Blankets. It's lots of fun. I think in some sense the Anna Blankets are taking over the "therapy" this site has provided for so long. I always think of Anna when I make them and it feels so good to finish a blanket - knowing that Anna would be proud - hoping that with each blanket she will be remembered....
So....if you want a blanket - get your name in now. I've had some interest in blankets for Christmas - well, now is a good time to order one. Just drop me an email.

So what else is new? Well, Jack is doing great and makes us laugh each and everyday. We've discovered that he is quite the little charmer and loves to make others laugh. He just figured out how to pull himself up to standing. This morning I heard a loud thump from his bedroom followed by music playing. I ran upstairs waiting for him to start screaming. Well, I found him laying in his crib - eyes big as if he was thinking "what just happened?" Well, my guess is that he stood up and decided that the mobile could be fun to hang from. To make a long story short, the mobile has been removed as well as anything else he could "hang from" or step on. Also, since he started crawling, I think his biggest thrill is playing "hide-from-mommy." I feel pretty stupid when I run around the house and can't find my 10-month-old.... Of course the house is well baby-proofed so he can't get in too much trouble, but still. I always find him with a huge grin on his face. Joy, joy, joy....

So that's the update for now, I'll leave you with an Anna story.

My mom and I went to Target last week. As soon as I got up to the checker I noticed her name - Anna. I also noticed that she was wearing an angel pin. I wanted to say something like "what a beautiful name" or "I like your pin", but I just couldn't get it out for some reason. The name and the angel caught me off guard, I guess. As I handed her my money, I dropped a dollar. I reached to get it - thinking it had fallen on the floor. Anna said "it's right here" (it hadn't dropped all the way to the floor) and as she looked me straight in the eye she said "my guardian angel caught it." It just gave me goosebumps and now I was completely speechless. I was in such shock that as I drove off in the car a woman had to wave me down as I'd left my purse on top of the car!!!