Happy 3rd Birthday Peanut

I can only imagine the level of excitement that would surround you today in anticipation of your Birthday.You'd be running around like a crazy-ass, impatiently waiting for your cake and presents. You'd be trying to explain (in 3-year-old speak) to your sister why it's your day and trying to share your excitement. I just wish you were here to share this day with us.

We miss you every day. Love you more than ever!

Happy Birthday Peanut!

Two years is too long

It's been far too long missing your smile. Just once more... for even a second....

Miss you so much!

Love you always!

Happy 2nd Birthday Peanut

Two years ago today you were brought into our world to change it forever.  I wish today were truly a "Happy Birthday", but it's more of reminder of how much your absence still hurts. It's hard not to let the sorrow at your absence overwhelm the memories of joy we felt at your arrival. 

Not a day goes by where I don't miss your smile, your throaty chuckle, or your full head of hair. I still feel your penetrating gaze looking upon my soul, giving me strength to draw upon when my sorrow goes too deep.

I know you're watching over our family, guiding us with your little sister. Thank you for that! I hope you're partying with all the other AGS angels eating cake to your heart's content.

I miss you & Love you my little sweet Olivia Anne.

A Bundle of Joy at the End of the Rainbow

My Dearest Olivia,

I'd like to introduce you to your little sister Amelia Anne.

She was born 2 weeks ago today on 10/18/10. She tipped the scales at 7lbs 3oz & 20 3/4  inches long. She came into this world a very special child -- not just that's she's a Rainbow Baby, but she's got you as her older sister and personal Guardian Angel.

We know you've been watching over her since we first found out about being pregnant on your 1st Birthday. A day where we should have been giving you presents, you gave us the best present we could have ever dreamed of.

All throughout the next 9 months you have never been far from our thoughts and hearts; every Dr's visit, every test, every ultrasound, anxious days of waiting. You guided us and helped reassure us that all would be OK.

When we had the 3-D ultrasound, Amelia's face reminded us so much of you. The broad nose (yeah that's daddy's nose -- poor girl), your mother's lips, munching on her hand, even the little episode of Hiccups she had during the ultrasound reminded us of you.

Olivia's Little Sister

There were tears of joy and sadness when she was born; Joy because we finally got to meet our Rainbow Baby. Sadness because it reminded us of what we've lost. Your beautiful picture sat at our bedside, giving us strength all night long.

I'm sure you'd approve of her first out fit too!! Not only does she wear it proudly, it also has a nice Dragonfly on it :)

We miss you everyday peanut, but we know Amelia couldn't have hoped for a better Big Sister. Thanks for guiding her safely into this world. Thanks you for acting as her personal Guardian Angel now and in the future as Amelia grows into the healthy and wonderful person she's destined to be.

We'll love you always.

Love,
Dad, Mom, & Amelia

365 Days of Eternity

One year ago today I put our sweet Olivia back to bed after her 2am feeding. I rocked her to sleep, kissed her forehead, rubbed her cheeks, and whispered "I Love You, Sleep Well." Little did I know, as I quietly pulled the door shut and crawled back into bed beside Sara, that I had just spent my last moments with our precious Peanut.

The stillness of that Sunday morning was completely misleading, soon to be broken by the frantic cries and screams of breaking hearts and shattered lives. When I woke up to sun streaming into our room rather than cries from the baby monitor, I knew something was wrong. I checked the clock, it said 9am, a bit past Olivia's usual wake-up time. As soon as I opened the door to her room, I knew my recurring nightmare had come true. Holding my precious Olivia, still and lifeless, no cooing, no crying, no giggling, no wiggling, just still; a quiet peaceful look on her face. She had departed this life after fitting more into her 6 short months than many people experience in a lifetime.

One Year Ago Today

At 9:15pm on 2/19/09, Sara and I were introduced to our daughter Olivia Anne. We were well aware that our lives would change forever, yet totally unprepared for the direction of change. Today should be a day of celebration and laughter, yet instead it will be a day of sadness and tears.

The last 12 months have been a roller coaster of emotion and stress. Even though we were exhausted the first 36 hours of our life with Olivia were perfect. We did not yet know that she had a heart defect, we did not know her liver couldn't clear itself of bile, we didn't know only one kidney would function. How sweet those precious hours of peace were. I can remember waking up to her 'hungry' cry during that first night, the pride I felt in being a father, the overwhelming urge to protect and defend, the reality of being a family of three now.

Not a moment goes by where Olivia is not front and center in our minds. The loss of those bright shining eyes and dimpled smile changed who we are forever. The torn fabric of our family might slowly be reworked and mended, yet always will the scar remain. We have made many new friends along our journey, while some old ones have faded away. The support we've received from friends, acquaintances, bloggers has been critical to our survival and will continue to be so in the future. I ask you now to keep us in your thoughts, not just today, but next week, next year, five years from now. Light a candle, Say a prayer, send a card, an e-mail, a phone call, acknowledgement that Olivia touched your lives keeps us going.

Peace,

Ben, Sara, & Angel Olivia

Goodnight My Sweet Angel.... Happy 1st Birthday

Farewell 2009

2009 started with such hope and promise for the future, only to come to a sad end, turning the page on a year that changed our lives forever. No matter how sad, angry, or lost we feel, I would not trade one moment of the life we had with Olivia to make the pain go away. I'm just glad that 2009 will soon be a fading memory, ushering in a new hope with 2010.

Sleep well my sweet. Happy New Year Olivia. We Love you.

Alagille Tribute

Here's a video of our extended Alagille Family, put together so nicely by Julee Spalinger. At this time of year, please take a moment to reflect on what you have and what has been lost. If you are lucky enough to have fully healthy children count your blessings and don't take ANY time you have for granted.

Peace,
Ben

Make photo slide shows at www.OneTrueMedia.com

Happy Thanksgiving Peanut!

We Love You & Miss You SO much....



Adele - Chasing Pavements

I've made up my mind,

No need to think it over,

If i'm wrong I aint right,

No need to look no further,

This ain't lust,

This is love but,

If i tell the world,

I'll never say enough,

Cause it was not said to you,

And thats exactly what i need to do,

If i'm in love with you,

Should i give up,

Or should i just keep chasing pavements?

Even if it leads nowhere,

Or would it be a waste?

Even If i knew my place should i leave it there?

Should i give up,

Or should i just keep chasing pavements?

Even if it leads nowhere

I'd build myself up,

And fly around in circles,

Wait then as my heart drops,

and my back begins to tingle

finally could this be it

Should i give up,

Or should i just keep chasing pavements?

Even if it leads nowhere,

Or would it be a waste?

Even If i knew my place should i leave it there?

Should i give up,

Or should i just keep chasing pavements?

Even if it leads nowhere

Should i give up,

Or should i just keep chasing pavements?

Even if it leads nowhere,

Or would it be a waste?

Even If i knew my place should i leave it there?

Should i give up,

Or should i just keep chasing pavements?

Even if it leads nowhere

It Means Nothing

Sometime a song just hits home. I came across this song

when a friend posted it on Facebook shortly after Olivia died.

Somehow it just seems o capture a lot of what I can't seem to

express in my own words.

Did we lose ourselves again?
Do we take in what's been said?
Do we take the time to be
All the things we said we'd be
And we bury heads in sand
But my future's in my hands
It means nothing
It means nothing

You can find yourself a God
Believe in which one you want
'Cos they love you all the same
They just go by different names
When we fly our flag today
Are you proud or just ashamed?
It means nothing
It means nothing

It means nothing
It means nothing
It means nothing
If I haven't got you
If I haven't got you
If I haven't got you
If I haven't got you

And the sun sets in the sky
You're the apple of my eye
If the bomb goes off again
In my brain or on the train
I hope that I'm with you
'Cos I wouldn't know what to do
It means nothing
It means nothing

It means nothing
It means nothing
It means nothing
If I haven't got you
If I haven't got you
If I haven't got you

If I haven't got you

Olivia Memorial Compilation

Here is a shortened compilation of pictures that were shown at Olivia's funeral.

The song is Somewhere Over The Rainbow/What a Wonderful World performed by Israel Kamakawiwo'ole

Thank you to everyone who has supported us and helped us through our ordeal. Everyone has been just wonderful in our time of grief. Sara and I are blessed to have such great friends. Thanks.

I'll keep posting every now and then so keep coming back.

Dragonflies

I am still at a loss for words to describe our current journey. Three weeks have gone by, yet every moment has seemed to drag by excruciatingly slowly. When Olivia was born in February our lives changed forever. Our regular routines and freedoms were thrown into chaos. Slowly over the next weeks Sara and I established nice routines all centered around Olivia - Feedings, Playtimes, Baths, Dr Visits, Medicines, Etc. We were satellites orbiting the center of our universe -- Olivia- a very bright star. When she left our world 3 weeks ago, our Sun, our Center, Our Focus was taken away. Sara and I lost our center, we lost our focus, we lost our Star. Hopefully someday we will find pleasure again in the freedoms that have returned -- finishing a meal uniterupted, sleeping in on the weekends, getting in the car w/o needing to 'load up.' These are freedoms we glady gave up and don't want back, but we have no say....

Needless to say, we have searched everywhere to understand why. We look for the tiniest little sign that things will be ok. The other day we were fortunate enough to experience one such event. Sunday morning 2 weeks after Olivia passed away I noticed a large number of bugs flying around our back pasture. When Sara and I went out to investigate, we were overwhelmed by Dragonflies. There were probably 200 or more flying around in our couple acre pasture. We stood out there and marveled at a spectacle we had never seen before. In the 10+ years I have lived in this same house, never had I seen this many Dragonflies in one area.

As we stood and soaked in this display of gleaming wings and darting bodies, one large Dragonfly came up to us. It had an iridescent green body with a purple/blue sheen to it's tail. The wings were a transluscent silver, gleaming in the warm sun. It hovered in front of Sara's face for a few seconds, then it moved over to me and landed on my left shoulder. Soon it took off and dissapeared into the rest of the Dragonflies.

While looking around on the internet about dragonflies, we came across some interesting facts. Native Americans believe that Dragonflies represent renewal and can be messengers from the spirit world. The story below was also found in our search, somehow it feels very appropriate.

The Dragonfly

Once, in a little pond, in the muddy water under the lily pads,
there lived a little water beetle in a community of water
beetles. They lived a simple and comfortable life in the pond
with few disturbances and interruptions.

Once in a while, sadness would come to the community when one of
their fellow beetles would climb the stem of a lily pad and
would never be seen again. They knew when this happened; their
friend was dead, gone forever.

Then, one day, one little water beetle felt an irresistible urge
to climb up that stem. However, he was determined that he would
not leave forever. He would come back and tell his friends what
he had found at the top.

When he reached the top and climbed out of the water onto the
surface of the lily pad, he was so tired, and the sun felt so
warm, that he decided he must take a nap. As he slept, his body
changed and when he woke up, he had turned into a beautiful
blue-tailed dragonfly with broad wings and a slender body
designed for flying.

So, fly he did! And, as he soared he saw the beauty of a whole
new world and a far superior way of life to what he had never
known existed.

Then he remembered his beetle friends and how they were thinking
by now he was dead. He wanted to go back to tell them, and
explain to them that he was now more alive than he had ever been
before. His life had been fulfilled rather than ended.

But, his new body would not go down into the water. He could
not get back to tell his friends the good news. Then he
understood that their time would come, when they, too, would
know what he now knew. So, he raised his wings and flew off
into his joyous new life!

~Author Unknown~

In the weeks to come I'll post a small memorial video of Olivia, keep checking occasionally, I'll keep the site active. Thanks again to everyone for their expressions of sympathy and support and of course to those who have donated in Olivia's name to The Alagille Syndrome Alliance. Take a moment to go there and donate $5 if you haven't. Thanks.

Thanks for listening.

Ben, Sara & Little Angel Olivia.

Time for Reflection

Sara and I will be taking some time away in an attempt to recenter our lives. It won't happen in one day, one week, or even one year, yet we need to start the process.

We wish to thank everyone for their outpouring of prayers and support. It has helped sustain us through the darkest days we could ever imagine. Thank you we love you all.

If you are in any way able, making any size donation to the Alagille Syndrome Alliance in Olivia's name will go a long way toward helping other families affected by this insudious syndrome. Thank you so much to the generous outpouring we have already seen.

Continue to check in here every once in a while, I still have some things I need to say.

Until then,

Peace to you all,

Love --

Ben & Sara & Our Little Angel Olivia

Sleep Well

with your eyes of steel blue,

you pierced my heart.

with your red-golden locks,

you bound my heart to yours

with your toothless smile,

you stole my heart.

with your delicate fingers,

you held my heart.

with your laugh and giggle,

you tickled my heart.

with your cry,

you broke my heart.

with your silence,

you tore my soul asunder.

sleep well my angel,

you will be forever in our hearts.

OAH 2/19/09 - 8/16/09

Stuck in a Rut.... (Part 1)

... with babies we've found out that's not so bad of a thing.

Olivia has had a pretty hectic schedule for the last

2 weeks, leaving us all a little more or less frazzled :)

Week 1 itinerary:

• Monday Evening:

The Disco Crib Experience - 10pm - ?

• Tuesday:

8:20am U of M Liver Recheck
8:40am U of M Kidney Recheck
9:30am Vampire Blood Draw

12:30pm Kidney Ultrasound

1-3pm Eat Lunch, Nap, Travel Home

3:15pm Stop at Chelsea Teddy Bear Factory

3:18pm Acquire another stuffed animal

• Wednesday & Thursday:

Normal Routine @ Home & Grandma's

• Friday:

Late Afternoon: Kansas & Missouri Huelsbergen Clan Arrive

Olivia was not impressed with all the new arrivals: My Father, Brother, Sister-in-Law, 2 cousins, 2 dogs and 1 bird. She gave them all "The Look" -- trying to decide if they were going to poke and prod her like most all newcomers (Docs and Nurses) do. She showed her dissatisfaction with numerous grumpy faces and crying. Great now my family thinks she's a complete grouch....

• Saturday:

AM: Hang out at home & watch her cousins freeze in the unseasonably cold pool. Rianna and Lianna had a blast splashing in the water even with chattering teeth. At least the afternoon swimming session had some bouts of sun. (Pic to the right: Sara, Olivia, Grandpa Huelsbergen, & Rianna) The true Olivia started to make some appearances in the morning with a few smiles here and there, but the hustle and bustle still had her on guard - shooting "The Look" more than a

few times.

PM: The weather warmed up in the afternoon for a leisurely stroll around the grounds at Leila Arboretum. (Pictured to the left -- Myself, Olivia, Rianna, and Lianna in the background with a walking stick as tall as she is.) Everyone seemed to have a great time soaking up some sun and fresh air. Olivia really enjoys riding in her papoose,

it gives her a great vantage point absorb her surroundings. Over the last few weeks she is becoming much more aware of her environment - movement, sounds, & new objects. This walk proved to be just the ticket to put our little diva into a nice long nap. She didn't even make it home before she fell asleep. Home for a Barbecue and more sleep.

• Sunday - "We're Going to the Zoo!"

AM -PM: I feel we're very fortunate to have a very nice Zoo here in Battle Creek - Binder Park Zoo. For a non-metropolitan area, this zoo is quite progressive and attempts to place animals into a more 'natural environment.' The plan for today was to make it to "Wild Africa" and feed the giraffes. Olivia's cousins were very excited about this Safari. We packed our things early and were ready to go when Olivia woke up from her morning nap. We haven't gone on too many outings besides Doctor visits and little shopping

trips, so this was going to be interesting. Olivia did quite well, all the people, new sounds, and smells did make her look a little wide eyed at times. While riding the tram to "Wild Africa" it became a little breezy and Olivia had some pretty priceless expressions on her face when she got a blast of the air. "Wild Africa" exhibit is laid out in about a 2 mile loop taking you by

an assortment of African Wildlife -- Giraffes,

Zebus, Wild Dogs, Monkeys, and Birds. A little sprinkle of rain didn't dampen anyone's spirits. A quick lunch in the cafe, an Ice Cream Cone for Rianna & Lianna, and it was time to head home. Olivia had reached her limit of stimulation and was letting the world know she was ready for a break.

PM: On to dinner at Clara's on the River, a nicely restored railroad station from the later 1800's. A nice evening out with close family, good conversation, and good food... what more could

we ask for. Olivia was able to suck on her bottle in style with three Grand parents, her aunt & uncle, her cousins, and of course her parents.... not that she really cared who was at the table as long as someone supplied the grub. It was a late evening before Olivia finally got to her own bed/crib, but she 'slept like a baby' once she was down.