Our Journey 9/28/07

It is hard to know where to begin when telling the story of a journey not often traveled. However, without question, we must first start by thanking all of our family and friends for their unconditional love and support during this time. Even though we are facing difficult days ahead, your thoughts and prayers are being felt by each and every one of us. Our lives have been so blessed by the time that we have been able to share with Braden, Taylor and Graham. And we continue to be inspired by their courage, strength and selflessness. They are such sweet and brave little souls.

Again, we have been overwhelmed by the kindness and compassion of all of you who have reached out to our family--it is times like these that the goodness in people shines most brilliantly. Thank you kindly for keeping us in your thoughts and prayers.

Much love to you all, Ian, Kirsten, Braden, Taylor and Graham

The celebration of Taylor's life will be:

Thursday, November 1st, 1:00 pm

Our Savior's Lutheran Church, Lake Oswego

October 24, 2007(from Anne)

Last October Ian and Kirsten started a special year - a year without Graham but one where every day made them realize what a miracle it was to have Taylor in their midst. Today is the end of that journey

Taylor lost her fight against MLD early this morning in the arms of her mommy and daddy. She was absolutely the sweetest girl and from the day she was born and you could easily find yourself lost in her gaze. The Olsen family is again, re-living the same sadness they felt at Graham's passing but as was the case then, their home is filled with amazing love and support. This is Taylor and Graham's legacy. We will all miss Tay's beautiful eyes and calm spirit but we can only imagine the joy of the angels who get to watch her and her brother soar free of pain together. Together....where they belong...truly a final healing.

September 28, 2007

Graham Roderique Olsen

July 16, 2002 – September 28^th, 2006

“I loved the boy with the utmost love of which my soul

is capable of and he is taken from me ~

Yet in the agony of my spirit in surrendering such a treasure,

I feel a thousand times richer than if I had never possessed it.”

~ William Wordsworth ~ 1812

To our Dear son Graham~

May your magic keep on—touching hearts and inspiring lives.

May your spirit continue to soar..

Even though we only had the chance to hold you for a while~

You gave us a lifetime of memories.

We are honored, humbled and eternally grateful for having been blessed by your infectious personality along with your warm and gentle presence.

Until we meet again, please save us a seat on your favorite swing in the playground of heaven.

God bless Bubs~We love and miss you dearly.

Love~Daddy, Mommy, Braden, Tay Tay & Rian

July 16, 2007 - Happy Birthday Taylor and Graham

Some days have no beginning
And some days have no end
Some roads are straight and narrow
And some roads only bend
So let us say a prayer
For every living thing
Walking towards a light
From the cross of a king..

B. Harper From Picture of Jesus

Five years ago today, God breathed life into our two angels sent from heaven—Taylor and Graham Olsen—and to this day, none of us has ever been the same. I remember it well, a fanciful July day that exuded the warmth and the shimmering light of summer. I was the first one to hold you, Tay. In my arms you stared up at me for the longest time, blinking your eyes only between extended gazes. You must have recognized the voice but the face was unfamiliar it seemed. Or was it? I have always wondered about that day...because I see the same look in your eyes now. The voiceless symphony that seemingly lies within those long gazes tell stories without words, just as when you were born. What was it that you were trying to tell me back then? I’ll always wonder. But there has always been an infinite wisdom in your quiet and loving demeanor—a gift certainly not born by chance.

And as quietly as you entered, just as your peaceful nature would indicate, your brother Graham came into this world the same day with the fanfare of fifty trumpets. Born with an Apgar score of 1..we never knew how close we were to never knowing you, Bubs. But you made it handsome one and showed us all the true meaning of a “life well lived.” Even in the end, when your legs didn’t allow you to walk, you still stood taller than any of us can—and I will always remember that proudly and fondly.

On this day, we celebrate both of you – Taylor and Graham. Thank you. Thank you for being here with us. Our lives and hearts have been deeply touched…How proud we are of you

Today we Salute You! Happy 5^th Birthday Our Two Angels…

July 16, 2007

Dear Taylor,

Happy 5th Birthday to our angel here on earth. You have been such a blessing. Your kind and gentle spirit is a gift to us all.

I wish I could give you something very special for your birthday, but I can’t seem to think of anything that would compare to all that you have given me. You have taught me patience by the way you seem to look and tell me with your eyes that you’re okay. You have shown me courage, the kind of courage I have never witnessed before.

Of all the children in this world, I feel so honored that God chose me to be your mother. You have changed me forever.

On your birthday I wish you peace and that you feel the love of all those whose lives you have touched and made better. Especially mine.

Happy Birthday – Tay!

I love you.

Mommy

Dear Bubs,

Happy Birthday to the sweetest angel in all of heaven. I hope God’s throwing you a big party with all your favorite things like candy, Elmo and lots of yellow balloons.

We’re having a party too and lots of friends and family will be there. So look for the balloons we send up your way.

Graham—I miss you so much. I was thinking about the day you were born and how I couldn’t imagine that I could love someone as much as I love you. There was something magical about you. Everyone who ever met you was drawn to you. Maybe it was that sparkle in your eye or your big, sweet smile. Regardless, you always had IT.

This birthday is a hard one for me because I so wish you were still here. I will never get used to not having you with us, but I know you are healthy and running free. Not a minute goes by that I am not thinking about you.

I love you Graham, and wish you your happiest birthday yet.

Love,

Mommy.

Memorial Day 2007

It's hard to imagine that it's been so long since we last spoke. Words seemingly elude me these days whereas they were once so readily accessible. I make no excuses. Life has changed.

In the days and weeks that surrounded Graham's passing, it was difficult to resolve the utter feeling of sheer emptiness. When someone comes into the world, specifically our world, and leaves such a profound mark on so many, many lives it is hard to know how to go on with out them. Then time gives us perspective, if not reprieve. We tell ourselves that it "makes much more sense to live in the present tense." But what are we to make of the void of a space that was once occupied by someone who so indelibly touched our souls?

Enter today.

This Memorial Day was one of the first times that I felt the calming presence of our dear son since he left all too soon. For so long, I've felt just like Adam Duritz, where in his words "It's Raining in Baltimore" he states: "I need a phone call...And yet I get no answers...I miss you...I need a phone call." I've always wondered when I was going to "get a phone call" to know that everything else is okay.

Then as morning turned to afternoon and the clouds were parted by the sun--a warmth revealed itself. Children--Gunnar, Braden, Lily and Rian--laughed and played. And there was Taylor, with the late sun enveloping her precious face, I saw a certain sense of peace and calm that I've not seen for some time. She listened intently to all the sounds that the children dancing around her exuded. The contentment on her face was unmistakable. Yet, it was her silence that resonated most profoundly. Taylor spoke without having to say nary a word. Everything is okay.

There's things that I remember and things I forget about Graham. But the one thing that will never escape my memory is the comfort that he provided. On this day, judging by the look on Taylor's face, that comfort was omnipresent. Maybe it was the innate language that twins communicate with. Or maybe it was Graham telling us he's here (with us) and thinking of us all. Hard to know. These days we celebrate the small joys that we can gleam from Taylor--days without pain or distress; occasional smiles, etc.. She, much like Graham before, has lost all motor-functionality. But what I have found to be most impressive about Taylor is her implicit way of communicating. Her eyes tell stories remote of words...something that remains quite remarkable to witness.

Speaking of, could it have been that the twinkle in Taylor's eye today was her delighting in telling Graham to run with the wind at his back? Or perhaps it was him making sure we were all okay and comforted this Memorial Day? Or just maybe, as I like to think of it, it was a simple "phone call" checking in from around the bend...

"Around The Bend"

i'm wishing you a-well
mind at peace within your cell
covers up, i cast you off
i'll be watching as you breathe
i lie still, you move
i send you off around the bend
i hold your head deep in my arms
my fingertips they close your eyes
off you dream, my little child
there's a sun around the bend (yes)
there's a sun around the bend
all the evenings close like this
all these moments that i've missed
please forgive me, won't you, dear?
please forgive and let me share...
with you around the bend
you're an angel when you sleep
how i want your soul to keep
on and on around the bend

E. Vedder

March 10, 2007(From Anne)

Kirsten and Ian really do appreciate so many of you who show your concern for them through this site. Ian and I spoke this morning and unlike the constantly changing world they were experiencing during the initial phases of Taylor and Graham's experience with MLD, they just don't have as much to update on a regular basis. The whole family has felt the loss of dear Graham in ways none of us will ever know; but I could not be prouder of my friends with the grace they show as they carry on with their lives, focused not on their loss but on the lives of the three little girls placed in their care. Their focus on their kids show what amazing parents they are.

Taylor recently had a bout of pneumonia but has rebounded and Ian says she has had a few good days of late. We hope she continues with those good days so she can experience the new house as it is nearing completion. I know the Olsens will be SO GLAD to get back to their own home with room for all the caregivers and a place for all their stuff! The garage at the rental is packed!

February 7, 2007 (From Kirsten)

It has been such a long time since we have updated the website and we thank all of you who so faithfully check on us through the site and through your calls and visits. We have been aware of the love and support of so many people from the day we took the first step on this journey. You have carried us through.

We will tell the story of Taylor and Graham on the annual radio-thon for Children's Cancer Association February 8th. The twins were honored as one of CCA's Annual Heroes in 2005. The Early Valentine's Day for CCA Radio-thon is on 105.1FM THE BUZZ on the Nelson & Terry Show. We are honored to share Taylor and Graham's journey, a story of hope and courage.

Taylor continues to be as well as can be expected. Grammy gave the best description of her recently when she said Taylor is "peaceful." Most of her days are spent cozy on the couch snoozing away. Since she is not responsive most of the time, we miss those sweet Taylor smiles but still love giving her kisses on her soft cheeks. Rian who is learning to be gentle with Taylor, fluctuates between sweet kisses and pulling her hair since Tay can't respond! Tay has had another central line put in place to control seizures, spikes an occasional fever but takes her food well and seems comfortable 95% of the time.

Braden has the busy schedule of a six year old which includes kindergarten, gymnastics, tap and even guitar lessons. She has had her first skiing experience this winter. She is such a great reader and enjoys reading stories to Taylor. She says she is pretty sure Taylor's favorite book is Goldilock's and the Three Bears!

Speaking of books, we want to give a huge thanks to Sherry Sandilands for organizing a book drive in Graham's memory. We are grateful to each of you who lovingly donated and inscribed books to Bubs especially the 4th grade Girl Scouts from Our Lady of the Lake School. We have given the books to several of the places that impacted Graham's all too short life: Legacy Emanuel Hospital's Rehab and Development Department, the Lake Oswego ESD who provided pre-school for the twins, Olsen Pediatrics, and the Children's Cancer Association. We love to think about memories of our little guy inscribed in books which might help someone else going through their own difficult journey.

Thank you again for showing such love for our family.

November 19, 2006

In Loving Memory of Graham Roderique Olsen

It has been nearly two months since our dear Graham received his wings and became our angel. Our days since his passing have been filled with bittersweetness as our minds know he is now free but our hearts are heavy as we miss him so incredibly much.

There is a quiet in our house that we've never felt before...a void beyond description. While we know Graham is in a beautiful place--in God's hands--it doesn't make it any easier not having him here with us. We're going to miss his smile. His kind and gentle ways. We're going to miss his touch and the way he comforted each of us even though it was supposed to be us who comforted him.

Graham's spirit shone like lightning in a bottle. He was gentle--like the cool breeze that rides in on the ocean's crystal blue waves. He was comforting--like a warm, lazy Sunday afternoon.

For the last two years we have solely concentrated on making Graham & Taylor's days with us the best and most productive that they could possibly be; forgetting about the original diagnosis of MLD while strictly focusing on "living" and making each day count.

But now that Graham is gone from our earthly world--it has been hard to internalize what he had to endure while here. Kirsten said it best when she claimed that she "cannot help but feel like this has been so unfair to Graham." Amazingly though, even as he was stricken with this unyielding condition, Graham was still so full of joy and happiness. Yet he never got to fulfill HIS dreams and that is something, as a parent, that remains difficult to resolve.

However, we have taken solace in knowing the lasting legacy and impact that his four powerfully, meaningful years has been. Graham didn't have the gift of time. He was only with us for a short while. But boy, did he ever make his days count. After all, for most people, it takes a lifetime of achievement to make the kind of impact that Graham has. And he did so with such formidable grace and beauty.

We, as Graham's parents, are thankful to have been privileged to know and honor him. We are forever grateful to be witness to the importance of life's lessons that Graham gave us as one of his most uniquely gifted attributes was his ability to give so much more than he received. We remain humbled by his presence and blessed for the lifetime of memories he gave us.

We weren't ready to say goodbye, sweet Graham. We miss you more and more each day.

God bless you, dear son and sleep tight.

We have said many times--that it is times like these that the "goodness in people shines most brilliantly." And to that avail, we'd like to thank each and everyone of you for your continued thoughts and prayers. All of your cards and messages of love and hope have enveloped us in warmth while serving as a great source of strength for our entire family.

With all our love,

Ian, Kirsten, Braden, Taylor and Rian

October 3 (From Anne)

The services for the celebration of Graham's precious life will be held on Friday at 3:00 pm at Our Savior's Lutheran church on Country Club Road in Lake Oswego. Kirsten and Ian want everyone to know that children are welcome and there will be nursery care for the small ones. A reception will follow.

I also wish to thank so many of you who have used this site to express your wonderful messages of love and hope to the Olsens and their extended family. They all take great comfort from your words.

October 1 (From Anne)

I know that many of you are waiting for information regarding the celebration of Graham's life. I hope to have more information tomorrow but it will most likely be the end of this week or next weekend. I promise to post details as soon as they are finalized. For now I would like to let you know that the Olsens continue to show the grace and strength that we have all come to admire. They took Taylor to the Celebration of Courage where the twins were honored last year on the Wall of Courage. Taylor, with Kirsten's help, released one of the doves at the celebration while Braden released another. What a touching moment in memory of the courage of Graham and of the whole family.

Ian shared the following letter with me that I think so many of you would love. One of Graham's dear friends, Sue Stahl, comes every Friday with Marilyn to help take care of the twins. The day after Graham passed she dropped off this note during her usual weekly visit .

Dear Graham-

It's time for me to say goodbye and I'm not ready, but you know that. We've shared our Fridays for the past year and a half, and they have simply been the best. You are the best cuddler, growler, and spirit lifter ever. I'm afraid I was just one more of your conquests--we all fell for your beautiful eyes and soulful sighs.

It's time for our secret to come out. You always knew I took more from our time together than you did. You taught me about unconditional love, courage, patience, and family. You snapped me back into reality when I was too caught up in life's trivia. I will always carry you in my heart and hope you will continue to do your "magic" for me.

I know you are in a better place now and thank you for staying here for all of us as long as you did. I'll miss our time together in that special "cocoon" we carved out of the Olsen's living room. Fridays will never ever be the same again.

I love you sweet Graham--by the way, you had me at "grrrr."

Good night sweet prince...sleep well.

Sue Stahl

September 28, 2006(From Anne)

Today is the day our minds told us would come and our hearts pretended would not. After four years and one month Graham gave up his fight against the insidious deterioration caused by MLD. On July 16, 2002, our world was graced with a sweet baby boy. From the first day Graham insisted the world take notice of him.

Those of us who had the opportunity to know Graham are better for it. We have had the joy of his wonderful smile, his courage, his strength. We watched as he struggled with a pain that most of us will never know. We feel blessed to have been able to share in his life and we rejoice that he is now no longer held back by his disease.

Have you ever watched a helium balloon slip from a child’s grip? A sadness is felt over the loss, but the flight into the heavens leaves you with a feeling of grace and wonder. Where is it going? Graham’s spirit is like that – soaring, now free of the gravity of life, he rises to a greater force than you or I can imagine – a final healing. We can only watch with wonder at his graceful ascent and give thanks that we got to hold him for a while.

The Olsen household is filled with love and surrounded by God's spirit as they say their goodbyes to Bubs. I will post details of a celebration of Graham's life as soon as they are finalized.

September 24, 2006

"Life is not measured by the breaths we take, but by the moments that take our breath away." ~anonymous

It has been a year since we gathered to take pause to celebrate this beautiful and bountiful existence at the Walk for Our Two Angels. It is our sincerest hope that the remarkable journey that Taylor and Graham have embarked upon has somehow, in some way, touched your hearts and inspired your lives. I know for many of you--the subsequent days and months since the Walk have been cause for great celebration. It has been an opportunity for many of you (including ourselves) to dedicate precious time to cherish the great gifts we have...To be better parents, husbands and wives. To live more humbly and appropriately. To give and take time for those who need you most.

It's an interesting concept isn't it? Why many of life's most telling lessons do not come in the classroom--but the vast world in which we all reside. But each day is AND should be a teachable moment. Each hour you spend could be the difference in someone else's life. Take time, folks. Take time. Enjoy your friends and friendships, enjoy each other and the time you're blessed with. For Graham and Taylor, time (and the subsequent effects of MLD) is beginning to take its toll...but the lessons learned have become all the greater.

As many of you know, Graham suffered a series of seizures that many (of his primary caregivers) thought would be too insurmountable given the existing fragile nature of his health. However, for several months, he seemed to slowly bounce back albeit not to where he was previously. Unfortunately, in the past several weeks he has begun to lose a significant amount of his body weight as it appears that he is not metabolizing his food intake. It's hard to know the genesis of this problem. Is it the body shutting down? Or is it the temporary paralysis of the digestive system due to the deleterious effects of MLD? The answer remains "unknown" as are many with regard to this condition. With, MLD, time is the enemy because eventually the white matter is compromised to the point that the damage is too significant to overcome.

That said, if Taylor is the "ying" to the "yang" (Graham) then I can say that the same duration has treated her much more favorably. Taylor still suffers from bouts of Apnea which are particularly scary to her. This is a function of the brain not telling the body to breathe. Thus, she knows that she needs to breathe but the message delivery from the brain is not there. She also continues to have instances in which her pain management is difficult to regulate. However, overall she appears healthy and is physically digesting her food intake properly. She has lost some of her alertness over the past several months as well--but she does still crack a smile when prompted by her sisters or a doting grandparent. And most of all, Taylor loves kisses on her pink little cheeks!

A year isn't the only thing that has passed since the Walk. A one, Rian Elizabeth Olsen recently turned one as well. For those of you who haven't been graced by Rian's presence, I can say with stark confidence that Rian has blessed us with several traits not previously seen in our three other children...that being a wily, wry, mischievous nature. You knew it was bound to happen. Trouble usually shows up in the form of a capital "T" and apparently we caught it like the flu-bug in January. Braden will always be known as the "cerebral" one. Taylor will forever be known as the child with the most "loving" nature. Graham will affectionately be lionized as the "handsome" one with the "best hair" in the family. Then there is Rian. We still have some time--we'll keep you posted...But it looks as though we're in for it this time around. That said, having a healthy, budding child has been a very kind blessing to us. Seeing the smiling, affable nature of Rian is celebratory on the one hand, but sobering on the other, as it reminds us of the innocence lost that MLD has stripped Taylor and Graham of...a childhood that was not meant to be like any other.

The past year will forever be one that probably will prove to be the most challenging one that our family will have endured to date. As we detailed in these pages, Grampy (Jim Billeter) was hospitalized over an eight-month period after being felled by Guillian-Barre Syndrome. His doctors have since called it "the worst case of the condition that they have ever seen." Grampy has battled back and is now regaining his previously mastered skills due to the steadfast care of my mother, Grammy (Delta Billeter) who has been there for both Jim and the twins through was has obviously been an emotional rollercoaster. Through the loving guidance of Delta, Josh (Billeter) and a host of tremendous Doctors and therapists, Grampy will one day walk again soon (by himself) which will be cause for great celebration. Unfortunately, that comeback will be delayed a bit as Grampy recently suffered yet another setback after he had a mild heart-attack that his doctors attributed to blood clots that had formed as a side-effect of the Guillian-Barre. Not to worry though..as Grampy was here this weekend holding two of his favorite grandchildren and looks to be on the mend for good.

It has also a trying time for another grandparent of the twins who we all call "Pops" (Peter Nycum). Pops was diagnosed with 4th stage throat cancer several months back and went through an aggressive treatment regime of radiation and chemo. It was originally thought that Pops would have to have surgery once the treatments were complete. However, after successfully finishing his treatment, Doctors are so satisfied with the results of the chemo-radiation combo that they believe that surgery wont be necessary. Pops is slowly beginning to regain his ability to swallow food on his own and looks forward to a full recovery soon. He has been aided in recovery by his dear wife, Marilyn Nycum (Gamma to the twins) who also has shown a remarkable resiliency in the face of such challenges. Through it all, Gamma, too, has found this to be a moment to seek meaning as she told us recently that the extenuating circumstances that has transpired in each of our lives has her proclaiming that it is time to "get busy living!" Amen.

This forum obviously doesn't give us adequate room to appropriately thank all those who have made a difference in our lives. However, I would be remiss to not acknowledge the importance of both Nana & Papa (Sally and Craig Olsen) and Mimo & Poppo (Whitney and Tom Braden) in conjunction with our aforementioned grandparents (Grammy & Grampy and Gamma & Pops) who have dedicated countless hours of their time to take tender care of our dear children as well as keeping us in very good hands, always. All things considered, we are a very grateful family. Our children, extended family and of course, friends continue to be a source of inspiration to us. Whether it has been the gift of precious time, a loving shoulder to lean on or one of the dozens of wonderful meals that we have received there are many of you out there maintaining a watchful eye over our well being and we cannot begin to give enough thanks.

Lastly, to date, there have been so many generous contributions to the Two Angels Fund--we want you to know that these funds are only used to support causes that have made a lasting impact in the lives of Our Two Angels. We thank you all. Your generosity humbles us. One special individual who has shown us such care and kindness is Regan D' Onofrio , the owner of Meringue Boutique. As a tremendous supporter of both Taylor and Graham and our entire family, Regan has organized a special event brought to you by Portland Picks + Meringue Boutique on Thursday, October 5th, from 5pm-9pm where 10% of all proceeds will go to benefit the Two Angels Fund. We hope to see you all there!

With that, until next time...God Bless you all for your kind thoughts and prayers. It is by God's grace and your endless support that we make it through each day.

July 9, 2006 (From Anne) Today, I had a chance for reflection while putting together a slide show of the pictures from last year's celebration of Taylor and Graham's 3rd birthday - the Walk for Our Two Angels. I thought about all the planning meetings we had, all the decisions that had to be made, all the generous donations, and mostly all the love that was shown on that wonderful day. I love looking back at the pictures and the the faces of so many people who came together to honor the lives of these two little ones who have made us all take pause of our lives and give thanks for our many blessings. So, to all you girls who worked so hard - I miss seeing you; to all those who attended - thank you for making a wonderful memory for the Olsen family; and to Taylor and Graham - Happy Birthday Angels! Their 4th birthday will be Sunday so if you have a chance send them birthday wishes on their guestbook. If you would like to relive the Walk For Our Two Angels, you can check out the slide show. ( I have to throw in here that I had this all set to some great music only to find out that I could not upload the music files! So all you get is a little classical background or you can turn down the volume and turn up your own songs!)

Tay and Bubs seem to be doing fairly well. The whole family was out marching in the 4th of July parade and looking quite festive enjoying the holiday. Tay and Bubs spent some quality time with their daddy after the fourth while Kirsten took Braden and Rian to Black Butte. I stopped by and checked out Graham's new "do", a pretty spiffy haircut from his barber Rudy!

June 22, 2006 (From Anne) Just as the sunshine has made us all feel better, the twins seems to be strengthened a bit by the good weather. Graham is back to taking this usual amount of formula so the immediate concerns about his digestive system shutting down can be set aside for a while. That day will most likely come again but for now things seem to be good. The sunshine and dry weather also lessen the possibility for colds and other respiratory problems so we give thanks for the summer sun.

The house on Kelock has come down to the ground. Braden had fun watching it with Mimo and now can't wait for the new one to get built. Ian seems to live with the phone attached to his ears these days as he is in the midst of all the decisions that have to be made at this stage of the project. One of the twins favorite babysitters, Emily Hoke, has gone back to grad school and can't be around quite so much but Grampy (Jim) and Pops (Peter) continue to improve and so all those special grandparents can be around more. I hear that the photographer was at the house yesterday and both Tay and Graham opened their eyes for her. Look for some new pictures soon!

June 7, 2006 (From Anne) Watch and wait. Wait and watch. We all do it. For most of us it means saying our prayers, checking this website, giving Kirsten and Ian a call or maybe stopping by to hold Graham and Taylor. We watch and wait and are anxious to hear of any new developments on the twins conditions. MLD progresses in a long slow fashion and no one understands the agonizing process of watching and waiting like Kirsten and Ian. Our anxiety can not come close to the feeling that the twins' family must feel.

Graham's will to live has yet again proven that no matter how much information the experts have, there is no real prediction possible of when the end will come. He has remained seizure free for a week now but is not responsive at all. His breathing is a little less shallow which is good and will lesson the risk of pneumonia and he took about four ounces of formula today which is also a sign that he is holding his own. Taylor's condition is relatively unchanged. Kirsten and Ian, like the rest of us, can only watch and wait and pray.

June 4, 2006 (From Anne)

I stopped by the Olsens' yesterday and I pleased to see that Graham was quite peaceful. He appears to be relaxed and shows no outward signs of seizure or even discomfort. All four kids had just had baths and smelled so sweet! Kirsten told me this morning that the weekend nurse says it is not uncommon for people to be knocked out for days after a seizure as long as Graham's. However, the biggest concern is that he is so knocked out that he is not coughing and thus not moving all the fluid in his lungs. Pneumonia is always a risk. He has had at least a few ounces of fluid which is good. I will keep you all updated on any changes. Kirsten and Ian are very appreciative of all those who have called, stopped by and especially who have held them up in prayer.

June 3, 2006 (From Anne)

Our long absence in updating the site certainly is not indicative of a lack of activity in the Olsen household. They have been quite busy as they make plans for a much needed remodel (re-building actually) of their home. To accomplish this they have moved! Yes, a few weeks ago they packed it ALL up and moved a few blocks away. They are settling in nicely with more room in their new temporary digs while awaiting the beginning deconstruction and re-construction of their new home. We will have more updates regarding the move and the project to come but today I want to stick to the purpose for which this website was created - to update all those concerned about the progress of Taylor and Graham and the journey their family travels with them as they battle this horrible condition called MLD.

Taylor and Graham weathered the move fairly well. Their new room is outfitted with hospital beds instead of cribs which has made their care much easier. Kirsten told me how wonderful it was to snuggle next to her babies and soothe them back to sleep when they cry during the night. Unfortunately this week after quite a long period of stability there has been a turn for the worse for dear Graham. On Monday he began having a significant seizure which lasted for quite a long time. Another one followed on Tuesday which led to a change in medications via IV. While this appears to stop the seizure, Graham has not really awakened since that time. His little body does not seem to process any nutrition, a sign that he may be approaching the end of his fight with this disease. Kirsten and Ian continue to ask for your prayers and support as they are firm in their belief that this is what has given them strength since the day this disease made its insidious appearance in their lives. Now they ask for special prayers for their beloved son - prayers that he no longer suffer, prayers that the angels will lead him home.

April 5, 2006

"Human beings are made up of flesh and blood, and a miracle fiber called courage" - George Patton

Hello again, friends and loved ones. If there is one thing that you have probably gathered in reading this site over time--it is that I like themes. I find them both descriptive and relevant. And from this vantage point, courage seems to be a common thread that I've witnessed from many individuals who deserve special recognition for what they've endured and continue to face while exhibiting great perseverance and determination.

After what has seemingly been endless seasons in the abyss, Jim Billeter-more affectionately known as "Grampy" by all of the grandchildren-came home after six exhausting months of being in the intensive care unit at St. Vincent's Hospital and Providence Rehabilitation Center where he battled for not only his life but an insidious rare syndrome called Guillian-Barre. I know many of you have asked how Jim is doing? Although he has many miles to travel in terms of his recovery, he is finally home surrounded by the warmth of family and familiar confines. Doctors have explained to us that his recovery will be slow and gradual as Jim has to "reawaken" his damaged nerves so that they can remylenate once again. Regardless, the distance he has traveled from where he was several months ago--in the ICU completely unable to move a single muscle in his body--until now, has been nothing short of courageous. Even though Grampy remains wheelchair bound for the time being, he continues his regular weekly therapy while still finding time to make special trips to visit his beloved grandchildren.

I would also like to take the opportunity for all of you to keep Peter Nycum, Marilyn Nycum's husband and stepfather to Kirsten in your prayers as he, too, is courageously fighting a debilitating battle of his own. Several weeks ago, "Pops" as he is known by his grandchildren, was diagnosed with fourth-stage cancer. He is currently being treated with an aggressive combination of chemo and radiation to quell the spread of the cancer. Through it all, Peter has shown us all, that in spite of such enormous physical obstacles what remains omnipresent is the will of the human spirit. Peter is expected to make a full-recovery in due time. However, the courage that he has shown in the present moment deserves mention as he has taken this most adverse situation and turned it into a positive. You see..to Pops, this is merely but "a bump in the road." And while there remains several large potholes that he must navigate, he is down to the final two weeks of treatment.

Of course it would be impossible to mention the word courage and not include both Taylor and Graham. As far as the twins go (for the most part) they've been vacillating between good and not so good. Taylor has, at times, started to have greater seizure activity while incurring situational apnea which seemingly throws her into extremely high fevers. The most unfortunate consequence of this is the fear that she is overcome with which remains obvious to anyone who has witnessed one of these aforementioned episodes. Graham, on-the-other-hand, has actually had a fairly good several months now but is starting to have increased issues with keeping his feedings down. He is at the point where we have to take him in to see a gastrointerologist again because he, for whatever reason, is losing his ability to digest his own food intake. In addition, pain management continues to be an issue for both Tay and Bubs....as much as we wished it wouldn't be.

This is, and has always been the problem with MLD. When you seemingly think that the kids have come to a point where they are somewhat comfortable and stable--something occurs to alter their current path. I wish there was more that we could do...As a parent there is nothing worse than feeling helpless. But Taylor and Graham remain on God's time now and we just have to enjoy the simple pleasures of being able to be close to them on a daily basis.

When you think about it, we are indeed much the same in that we are each made up of flesh and blood--but few have the "miracle fiber" that Graham and Taylor embody on an ongoing basis. Their reach is far extending and that is what remains most satisfying. That deep down, I know they've made a difference. A difference that is significantly measurable in the lives of many who know them.

With that, I'd like to extend special thanks to both Emily and Elizabeth Holloway for their recent gift, an incredible children's book entitled, "Two Angels." It is a story that is familiar to you all; written as a class assignment project by Emily as part of her graduate school requirements at the School of Education at the University of Oregon. Elizabeth assisted her sister with design. At its essence, it is a beautiful message of courage, bravery, and redemption inspired by our own "two angels." There is a link to an electronic version of "Two Angels" on the guestbook page as well as the homepage..

January 23, 2006 (From Ian) We hope that the New Year is treating all of you kindly and favorably. To those of you who read this website on a regular basis to keep up with Taylor & Graham--we'd like to extend our utmost gratitude. Unfortunately, our lives are such that we don't have the requisite time to update this site nearly as often as we'd like as our daily lives of raising four children has left us with little time for the extracurricular.

To that avail, Rian is now five months old and trying desperately to keep up with her big sis. She maybe young but she's wily for her age. Appearance-wise, Rian is Braden's twin sister five years removed as their baby pictures look exactly the same! And if Braden was a pie, Rian would be the first to take a big bite out of her as she thinks her eldest sister walks on water.

As far as Braden goes, she continues to prosper despite having to deal with adult situations that most children, fortunately, never have to face. She is always eager to lend a loving hand in caring for Taylor and Graham and has also shown a special affinity for her 'lil sis, Rian. We all joke that "Rian will run before she walks" and much of that has to do with Braden's tutelage. Those two have been very, very good for each other for many reasons beyond simple words.

With regard to Taylor & Graham...I wish there were words that I could give you to elicit encouragement. However, given their situation, it is very difficult to report on both Taylor and Graham's prognosis because they aren't getting better and won’t be as the effects of MLD become more apparent. Graham has been fairly alert lately, even giving us an occasional smile. This is such a welcome site as we had not seen it in quite a while. He has had some real trouble with tolerating his feedings lately which means smaller amounts to be able to keep it down. We feared this past weekend that Taylor has again contracted pneumonia which is very scary considering the deleterious effects that it has on her already fragile respiratory system. However, as the twins both seem to do, she has bounced back and today seems to have been a fairly good day. She carries on sending her message of love and courage in spite of such difficult circumstances.

From an observational standpoint--the iron will that both Taylor and Graham have exhibited on a daily basis is astonishing at times. In many instances, it makes one wonder, "What would we do given the same circumstances?" These children carry an unfathomable burden that remains incomprehensible to bear, yet they continually do so with an unparalleled grace and beauty. I don't know how they do it. I don't know how.

Maybe the great singer/songwriter Ben Harper summed it up best when he penned The Will To Live, a song about several less fortunate souls who he'd had the opportunity to witness firsthand. It is a song of everyday people who inhabit this earth but remain seemingly unnoticed, yet altered Harper's view. These are his words….

The Will To Live

I met a girl whose heart
was on the right hand side
and upon the left
an angel did reside
they told her mother
that she never would survive
but she kept the rhythm
and is still alive

We must all have
the will to live
you got to have
the will to live

Then I met a man
who had to walk with his hands
born into a world
he couldn't stand
blessed with life
but cursed as a man
still he walks taller
than most of us can

We must all have
the will to live
you got to have
the will to live

Some are born with more
and some born with less
so don't take for granted
the life we've been blessed
it's hard to understand
that we're only a guest
and each one of us
shall be put to life's test

We must all have
the will to live
you got to have
the will to live

December 23, 2005 Hello again to all of you who keep and hold us close. During the ensuing months since the birth of our fourth child, Rian Elizabeth, we have taken some much needed time to bring a semblance of "normalcy" to our household given our atypical situation. With that--as this year draws to a close--it is amazing looking back upon the moments that have highlighted a duration in which we have experienced the greatest of joys and yet, almost simultaneously, endured some of the toughest trials that have been nothing short of breathtaking. Yet, through this long and winding road we have been granted a greater appreciation of the important things that this life has given each of us...

As this holiday season brings each of you together to celebrate family, the gift of health, the value of dear friends, the love you share with one another, and the pursuit of peace, take a moment to cherish each of these things for we have no greater responsibility on this earth.

Thus, I'd like to leave you all with some fitting words that embody the true meaning of this time. As a child, my Mom used to gather us every Christmas as a family to read a certain prose that she felt echoed the true sentiments of the season. While, at the time, I didn't quite understand its value both figuratively and literally....Today the poem, Take Joy by Fra Giovanni still resonates with as much meaning as it did back when it was written in 1513. Its beautifully crafted words read as follows:

TAKE JOY

I SALUTE YOU! There is nothing I can give you which you have not;

but there is much, that, while I cannot give, you can take.

No heaven can come to us unless our hearts find rest in it today.

Take Heaven.

No peace lies in the future which is not hidden in this present instant.

Take Peace.

The gloom of the world is but a shadow; behind it, yet, within our reach, is joy.

Take Joy.

And so, at this Christmas time, I greet you, with the prayer that for you, now and forever, the day breaks and the shadows flee away.

Fra Giovanni 1513 AD

To all of you who have been with us on this journey, God bless you all for the Joy you have given us this past year. We thank every one of you for your continued prayers and for all of the wonderful acts of kindness that you have blessed us with.

All the best and all our love to each of you wherever you may be.

Ian, Kirsten, Braden, Taylor, Graham, and baby Rian.

December 23 (from Anne) For those of you who have kept Ian's Dad, Jim, in your prayers and have wondered how he is doing, we have good news! Jim has begun his long trip back from Gillian Barre. He has made it out of the hospital to what feels like boot camp as he works seven days a week in therapy at Providence Rehab. He is regaining movement in his arms and can speak again. Delta told me they can feel the prayers of many every single day and they are so grateful for them.

Taylor and Graham have weathered a few mild colds and spend most of their days comfortably sleeping. Rian has the chubby cheeks of a cherub and can go from happy angel to screaming imp in three seconds flat. She is such a joy for everyone - how can you feel bad when you see her big wide grin? Braden is filled with the anticipation of Christmas of a typical five year old. She is such a sweet big sister. Her play dates, school, gymnastics and other activities keep her family moving, even if they are short on sleep - which I think Ian and Kirsten usually are.

November 17 (from Anne) Wow! I did not realize it had been so long since there had been an update. I talked to Ian about our lack of website communications and I can only tell you that my excuses for being busy come no where close to his! I can tell you that Ian and Kirsten are thankful for all of you who continue to check the website, sign the guestbook and send emails and messages of love and concern for their family.

Taylor and Graham are continuing to be stable with their health. Graham pretty much sleeps most of the time but still loves to be held and kissed on those sweet cheeks. Taylor is much more aware of her surroundings and you can always get a smile from her by talking about cheeseburgers or that crying baby sister. Having recovered from her bout of croup, Tay and her brother are hoping to remain cold free for the winter. What a severe winter cold could do to these little guys is a constant concern for Kirsten and Ian and yet they move forward with their lives with the knowledge that with the love and support of so many they will be able to face whatever comes.

Halloween kicked off the holiday season. Braden and Taylor were cute little cats and Bubs showed up as a cowboy. Even Rian got into the act as the cutest little ballerina you could ever see. Thanksgiving approaches and gives time to pause and give thanks for many things - Rian is growing so fast and is the sweetest, Jim is finally starting to show great progress on his road back from illness, Braden is such an imaginative well adjusted five year old that you wish you could bottle some of what she has, and Taylor and Graham continue to teach us all lessons about love, strength and courage.

I promise to update again soon - or better yet, to get the resident writer, Ian, back on board.

October 13 (From Anne) When Rian was only four weeks old Fred and I snatched her for a walk and ultimately brought her to our house where she very happily rocked away while watching the Mike Bellotti Show - that's University of Oregon football for those who don't know. She must have gone home and communicated her delight to Taylor and Graham because we were overjoyed to have them arrive at our house on Sunday, along with their father, for this week's Bellotti Show. They were out and about on a walk and just happened to time it right for a little Oregon football. The twins seemed to really love the change of space especially Graham who remained uncharacteristically wide-eyed. Perhaps it was the red walls of my den! Taylor showed us that wonderful smile of hers as we reminded her of the time our dog, Sadie, snatched a muffin right out of her hand when she was about one. We hope they will all come again soon.

Since last weekend the Olsens have celebrated a wonderful occasion - Braden Anne's 5th birthday. Braden has no idea of the important role she plays in her family. While she continues to grow to be a bright, beautiful, imaginative little girl she is a constant reminder to everyone of the good things in life and the blessing of a healthy child. Braden, I hope someday when you are grown you will hear the stories of how your sparkle was a strength very much needed by your whole family. A strength that only you could provide.

Taylor has shown some recovery from her croup and finally got some rest. However, yesterday she was taken to the doctor as she still struggles with what is most likely the beginning stages of some respiratory failure. She had a better day today and hopefully will rest well tonight. Graham has not recently suffered the breathing issues that Tay has but does suffer with pain throughout the day. It is hard to believe it has been a year since most of us heard for the first time of this disease called MLD. I know I express the views of many when I say it has been a journey we wish no one had ever taken but we are honored to have witnessed the incredible grace and strength shown by Taylor and Graham and their family and we have all learned lessons we will never forget.

Jim has stabilized and is no longer in ICU but is still dependent on a respirator and food tube. He struggles like Taylor with the respiratory problems brought on by paralysis. Jim and Delta continue to need prayers.

October 2 (From Jenny) Unfortunately, along with the fall season comes colds and for Taylor and Graham that can very serious. Sweet Taylor has come down with Croup and has not been responding to the steroids they were giving her to calm it. She has been struggling daily to breathe which also causes her heart to race. Because she is working so hard just to breathe her little body should be so exhausted but she has barely slept in days. Kirsten and Ian take turns at night holding her until early morning and sleeping on the floor in her room. Graham on the other hand sleeps almost constantly but seems to be comfortable most of the time. Both are continuously in the loving arms of their mommy and daddy and their whole family.

Precious little Rian loves to cozy up with her brother and sister and loves her swing. She is just the best little baby and after a good meal is a major cuddle bunny. Braden is doing great in school and as a veteran big sis, taking excellent care of her brother and sisters.

Jim is still in Cardiac ICU and we are all praying for his recovery.

Please keep them all in your prayers and hearts as always. They give them strength everyday.

Jen

September 21 (from Anne) Does it often seem when trouble comes it arrives not as a lone traveler but in groups just to see how we can handle all it throws at us? The Olsen family continues to wonder when it will pack its bags and leave town. Jim Billeter, Ian's step-father, persists in his battle with Guillain-Barré Syndrome that struck him over Labor Day weekend. While this disease typically causes temporary paralysis and then a slow progression back to good health, Jim's case proves to be a very different one. He is currently not improving the way the doctors would hope and he and Delta, along with Kirsten and Ian need the prayers of all who have shown such concern for Taylor and Graham as they struggle with Jim's health while continuing to care so bravely and lovingly for the twins. It is almost eerie that Jim's condition mirrors Taylor and Graham's with paralysis and respiratory issues. We all hope and pray for Jim's recovery and I am sure he will provide us with an even greater compassion and understanding for what Tay and Graham are going through.

As for the twins, they seem to be holding their own. The pain and fevers come and go and for now they seem to be free of any fall colds. They showed up like troupers at the CCA Wall of Courage celebration. What a fun day and such an honor to see the twins displayed on the wall as evidence of the bravery they (and their family) have shown over their lives, especially during the last year. The highlight of the day was Braden's release of several white doves as signs of the hope felt by all the families present with children dealing with life-threatening illnesses.

I will let you know of the Olsen updates as soon as I can.....until then, hug your children and loved ones, thank your parents for all they do and never forget how quickly life can take an unexpected turn.

September 15 ( from Anne) I am sorry for the continued lack of updates on the website! While I have headed into my busiest time of the year at Jesuit High School, my busy life is nothing in comparison with that of Kirsten and Ian. I was over at the Olsens' house last night and a snap shot of the evening went like this: Judy was in the bathroom giving Braden a bath. Whitney was in the kitchen cleaning up from a delicious lasagna dinner she had prepared. Kirsten was on the couch with Taylor who was having an episode of pain. Ian was giving meds to Graham and putting pajamas on him. I was walking Rian who has definitely found her voice and doesn't seem to yet understand that there others in the world who need her parents attention. An amazing amount of activity!

In addition to all that is on their plate, Ian and Kirsten have had one more huge area of concern. Jim Billeter, Ian's step dad, has come down with Guillain-Barré Syndrome and is in the ICU at St. Vincent's Hospital. We all send our prayers to Jim and Delta for a quick and speedy recovery.

Taylor and Graham seem to be in a pretty good place. They did see their neurologist who says while they seem to be having small seizures they are not anything that requires additional medication. Kirsten & Ian will be looking in the future for additional medical care during the day which will allow for more consistent care and hopefully a little more flexibility in their schedules. This weekend Taylor and Graham will be honored at the Celebration of Courage - the Cirque de Celebration - a free family festival on Saturday, September 17. This day is a part of the Wall of Courage project where Taylor and Graham and other area kids will be honored for their exemplary courage in the face of life-threatening illnesses. More than a thousand children, parents and community members flood Portland’s World Trade Center annually for this fantastic day of laughter, magic, celebration and fun—complete with a silent auction, car raffle, games, live music and more. All proceeds support CCA’s vital efforts on behalf of seriously ill children and their families. We hope to see you all there!

August 28 (From Anne) I received an email from Ian this evening asking me to give a new update on the twins and the goings on at the Olsen house. We hear that many people check on Mondays to see if there is new information posted. Unfortunately the weekends have been quite busy for Kirsten and Ian. Since Taylor and Graham's birthday and the great day they had at the walk, the twins have faced a few new struggles with the strength and courage that they have shown throughout their lives. Both seem to seesaw between fevers, respiratory distress, episodes of pain and what appears to be new seizure activity. The fevers pose a dilemma yet to be solved. Do they come from exposure to a small virus or is it simply a result of the effect of MLD on the portion of the brain that controls body temperature? No matter what the cause they do seem to make the little ones feel bad and Tylenol and a cool cloth on the head and neck are a must. The twins seem to have more shallow breathing and have had a few hard days and nights struggling to get a breath. Hopefully they will be able to keep more respiratory problems at bay as we head to the Fall/Winter cold season. The seizure episodes may be simply muscle spasms but an appointment with the neurologist in about another week may help make that determination. The twins have a caregiver, Lee, who comes to stay through the night Sunday through Thursday. Kirsten and Ian take complete charge of Friday and Saturday night. The twins need to be turned and have meds during the night and now with their breathing problems and fevers someone is almost always up with them. Add to this a newborn baby who wants to wake every few hours to nurse and you hopefully get the picture of how exhausted Kirsten and Ian must be.

Rian is such a good baby. With a full tummy and a clean diaper she can be tucked right in next to Taylor or Graham on the couch and sleep quite long and soundly with the warmth of her sibling and the sound of a heartbeat nearby. Braden continues to be a great big sister and prides herself on the fact that she has now been allowed to actually CARRY Rian! I hear there are some great pictures so look for a picture update soon.

Last but not least, Ian and Kirsten continue to show amazing strength and incredible love to these sweet babies placed in their care. Through it all they are always so grateful for the help of others, especially that provided by the all the grandparents. I know all of us wonder how we could handle dealing with two very sick children and an almost constant presence of others in our home - I am guessing most of us would not be able to do it with the grace and patience these two show. Tay and Graham, you and your parents are inspirations to us all.

August 21 (From Anne) I know many of you are anxious to hear the latest update from the Olsen household. I think anyone with four children under the best of circumstances can relate to how busy they are! My daughter, Emily is home for a short break from grad school so she has had the pleasure of helping out for the last week. Through her we can hear of the daily comings and goings of the Olsens. After a tour of the house led by Braden, Rian has settled into life quite well. Braden loves holding her baby sister and Rian is sure to bring a smile to Taylor's face. Graham is probably laying there thinking "How did I get surrounded by all these girls!" Taylor and Graham were happy to see their mom when she returned from the hospital. I am sure they are looking forward to the day when she can pick them up and hold them once again. Summer walks provide nice relief when the house gets hot and now if Kirsten and Ian could just get some sleep!

August 12 We are so happy to announce the birth of Rian Elizabeth Olsen! She is an absolutely perfect and beautiful baby girl - Dr. Palmer pronounced her a perfect 10! Click here for our first pictures.

July 21 Folks, we are off to Sunriver for some much needed R&R with Braden Anne. The twins have gotten the lions share of the attention of late so it's time for us to spend some quiet moments with Braden and take some time to let things soak in. Taylor and Graham will be in good hands as they will be well watched after by doting grandparents and friends.

For those of you in the area, please be sure to grab a copy of the Lake Oswego Review or West Linn Tidings as they will be doing a follow up story on the Walk for Our Two Angels this Thursday. Also, if any of you has photos or comments regarding the Walk we'd love to hear them--so please send anything that you'd wish to share to Anne and as soon as she has some R & R she will get them up.

July 18 WOW! I REPEAT WOW!! Thanks to all of you near and far who participated in celebrating The Walk for Our Two Angels and Taylor's and Graham's third Birthdays. It was an emotional, sun-soaked day filled with the sounds of children's laughter, old friends being reacquainted and many embracing in the name of love and the gift of life. The twin's birthday was a remarkable display to behold and a day none of us will too soon forget as the memories of this glorious day will be etched in our minds and hearts forever. Thank you so very, very kindly to every one of you for making this celebration such a moving and rewarding experience.

Graham and Taylor especially enjoyed seeing all of their friends and family who gathered to be with them--all 3,000 of them! It was also equally inspiring to see all of the other families with children affected by MLD join together to be appropriately acknowledged as they represent bravery in its truest form and remind us to live with joy in every moment. Saturday was a day that reaffirmed for many why we're all here and what greatness can be accomplished when people come together to celebrate in the name of community. The twins have touched many, many lives but it was all of you who made a difference in ours this day as our entire family was graced by an overwhelming sense of love and affection that was truly magnificent to witness.

I know many of you are eager to see all of the shining faces and read all of the uplifting stories from this inspiring event, the Walk for Our Two Angels--so please check the Walk for Our Two Angels page in the coming days for updates and pictures of the event that we hope will remain moments frozen in time for all to remember always. If you have a great picture, story or quote please email Anne and let us include it..

Lastly, the following quote should resonate for everyone in attendance Saturday...... "To have joy, you must share it--Happiness was born a twin." Lord Byron

We are eternally thankful to both Taylor and Graham for blessing us with three years of true joy and happiness. Happy Birthday to you--Our two angels.

July 11 Well, folks...it is down to T-minus and counting. Can you believe it? Only six more days until Graham & Taylor's third birthdays and the Walk for Our Two Angels. Of course, the twins have had this perfectly planned all along as the weather next Saturday is due to be sunny in the mid-80's without a cloud in the sky. And with over 40 vendors already signed up as sponsors--by our account--we are quickly approaching our goal for the Walk of nearly 1,000 participating attendees.

We'd also like to thank all of you who joined in the festivities related to the PIZZA SCHMIZZA 50/50 fundraiser last week. We haven't had a chance to get all of the figures back, however judging by the early returns, the fundraiser should ultimately net over $5,000 to the Our Two Angels Fund to directly support the Walk and its ancillary causes. For those of you who were part of the insanity up in West Linn on Monday--please pat yourselves on the back because you helped raise over $2,000 alone by celebrating the occasion in fine fashion. On a personal note, I'd also like to thank Rick Glenn (from Schmizza corporate), Nate Parr (of Fish Marketing) and all of the other franchisees who went the extra mile to help the cause. Your efforts and support are greatly appreciated...this was truly a total team effort.

Lastly, as we begin the countdown to next weekend..we've been reminded many times over in recent days as to why we are here and of the journey we've taken hand in hand with you all. We may no longer have the verbal gift of conversation with Taylor nor the joy of getting to watch Graham rumble through the grass--but what we do have are the treasured memories of two lives well lived. Recently, Taylor has been particularly full of smiles as if to be proudly announcing her awareness of her imminent birthday. Likewise, Bubs has given us a reprieve from our constant source of worry as he's been breathing soundly and responding much better of late. In all, these are the little joys, the quiet blessings that we take from each day. And at this juncture, What more can we ask?

June 24 As many of you know, the Walk for Our Two Angels is quickly approaching and so too is the media coverage of the event. We'd like to thank TBD Advertising and Fish Marketing for putting the word out and really getting such a great ground swell of support for this most special occasion. We'd also like to thank the Peters family in particular and the crackerjack staff who've been working countless hours toward making this celebration an evening to remember.

Also, as a reminder for all of you folks residing in the Portland metro area, please check out Friday's edition of the SW Metro section of the Oregonian. We have had writers and camera crews out for most of the week filming for a piece on Fox 12 News that will air this Sunday at 5:00PM along with a feature article in the Oregonian that will hit newsstands June 24th. We'll be setting up links from the two news vehicles so those of you from out of town can view the stories directly on our website. Again, this is great news and although the attention has been a bit surreal we remain honored that so many wish to celebrate the lives of both Taylor and Graham. Accordingly, we'll continue to do our best to keep you all connected with all relevant updates between now and July 16th. Even though Taylor and Graham are nearly entirely oblivious to tremendous outpouring of attention--it is one more instance of just how these incredible kids have affected and galvanized an entire community.

Lastly, please remember to pass the word along that ALL Pizza Schmizzas in the Portland/Metro area will be hosting a 50/50 night on Monday, June 27th in which 50% of all net proceeds will be donated to the Our Two Angels fund. Thus, for those of you in West Linn we'll see you on Monday and for those of you spreading out to the other locations in your area--thank you kindly for supporting the cause.

We wouldn't be where we are today without all of your love and support.

June 5 (From Ian) As many of you know--we have been busy planning the Walk for Our Two Angels which will take place on Saturday, July 16th. We ask that each of you who is planning on participating in the walk please register online so we can properly orchestrate this event as efficiently and expediently as possible. The main crux for us putting together this walk is to not only champion the lives of both Taylor and Graham but just as so many have expressed a desire to help our family we hope we too can ultimately help fund research that will one day get us one step closer to a cure for MLD and possibly other lysosomal diseases as well. Recently, I caught a rare glimpse into the future possibilities of the aforementioned.

Over Memorial Weekend, I had the opportunity to attend an international medical conference with other families afflicted by MLD in Washington DC that was put together by Agusto Odone of The Myelin Project (and also of Lorenzo's Oil fame). Researchers from all around the globe came together to discuss the latest therapies and research currently being conducted in three distinct areas: Bone Marrow/Stem Cell Transplantation, Enzyme Replacement, and Gene Therapy.

Although there is no cure at this time for MLD, many of the researchers are trying to identify key neurobiological clinical markers as presymptomatic identification. This seems to be tantamount to any semblance of successful treatment of this confounding condition. Presently, bone marrow and stem cell transplantation seems to be the only minutely successful determinant in prolonging the onset of MLD. However, it requires transplantation and engraftment of a healthy individual who is not yet symptomatic for there to be any relevant success in stemming the onset of the condition.

Gene therapy and enzyme replacement offer the most hope down the road for treating this devastating condition but remain a long ways away due to the limitations (i.e., length of time, size of animal models) of the clinical trials that are currently being conducted. Enzyme replacement still has the issue of passing the blood brain barrier and gene therapy has yet to be used on animal models larger than mice. There is also the continuing problem that there remains no clinical grade vectors currently available for the use of gene therapy in humans.

Thus, what we do know is that there are three distinctly different rationales/ideologies for which researchers are continuing diligently to find a cure for MLD. Regardless, they all remain miles away due to the difficulty associated with treating neurological disorders. The brain--aside from being the most complex organ of the body--doesn't allow for manipulative accessibility due to the blood brain barrier among other complexities. That said, we have made it a mantra here in our household that although we won't be able to change the course of Taylor and Graham's future, we absolutely have the ability to make a difference for others who will follow in our unenviable shoes.

The Walk for Our Two Angels is most definitely a celebration honoring the gifts that Taylor and Graham have bestowed upon all of us. The notion of living bravely and purposefully, selflessly and lovingly. However, this walk in its barest essence is also a call to all of us to affect change; to help dictate a better future for those families afflicted with MLD. That, we all have the ability to do and looking forward, we ask that each of you summon your strength and resourcefulness to help us help others.

Again, we'd like to thank the many of you who've volunteered countless hours in putting this endeavor together. We would also like to thank you folks who have blessed us with all of the wonderful meals, prayers of strength and acts of graciousness and kindness. Please know that all of you have made a profound difference for which we are forever grateful. God Bless.

May 31, 2005 (From Anne) It is hard to believe that it has been so long since the last update. Life has been busy for the Olsens. The most interesting thing is that Ian has just returned from attending a conference in Washington DC about leukodystrophy. He will be writing a lengthy update soon to let us know all that he learned during his trip. Taylor and Graham seem pretty stable now. I am sure the effects of the sunshine and upcoming warm weather is improving their spirits as they both seem to really enjoy being outside. They have a new stroller which fits their long legs and as Braden says "keeps their feet from dragging on the ground!" They have been able to get out of the house for walks and were even spotted having breakfast in the Pearl last weekend. Both Tay & Graham have lost weight - up to five pounds each. Kirsten says they are now on a new plan to try to gain some of that back. I know many of you join me in wishing we could give them some of ours!

The group of wonderful friends who are working so hard to organize the July 16th Walk for Our Two Angels want to encourage everyone to please register and plan to attend this fun event to show support for Taylor and Graham and their family.

May 11, 2005 (From Anne) Updates can be difficult lately - yet we know that so many of you want to know how the Olsens are doing. They continue to cope with all that is happening in their lives with grace and strength that can only inspire the rest of us. The twins seem to take turns going through episodes that bring them to a new level of complications with this disease. Lately it has been Graham's turn. When these times happen they tend to sleep the majority of each day, up to 95% of the time. They seem to suffer from pain less during these times but can have additional complications. For Graham this has usually been a more compromised respiratory system. As his little body works so hard to keep his lungs, heart and brain functioning his digestive system shuts down. This means that he can not tolerate the amount of nutrition that he would normally have. As a result both Taylor and especially Graham have lost quite a bit of weight. Graham also has episodes of apnea during these times - sometimes stopping breathing for up to 20-30 seconds. All last week there was a daily concern about how long this would last for the little guy. As of today, he seems to be coming out of it. He is now taking his Pediasure in small amounts and is spending at least some time each day more awake. Taylor seems to be in a more peaceful time currently. She sleeps quite a bit but her sweet face awakens to brighten the day of whoever is holding her.

May 2, 2005 (From Anne) We hope you take a moment to look at the new pics in the photo gallery taken just last week. The twins seem to be holding their own lately. We believe Graham can no longer see and this definitely makes it harder to communicate with our faces to these little guys. This makes the loving arms that touch and hold and the sound of familiar voices even more important. Taylor still seems to see which makes getting her sweet smile a little easier. The Hospice nurse that has worked with the Olsens is moving so that will bring yet another transition. Braden continues to be full of energy, fun and imagination and the new baby is definitely growing!

April 24, 2005 We would like to take a moment to pay special recognition to all of you who have shared in Taylor and Graham's story over the last several months. Before resetting the counter--you visited Our Two Angels site over 17,000 times to pay your respects to these special children.

It is amazing to behold how tragedy can elicit such triumphs of the human spirit. And to that avail, many of you who have been touched by Taylor and Graham have reached down and found ways to impact those around you where before your voice may have fallen silent. Out of such a remarkably difficult situation, this has been one of the greatest joys to witness first hand.

A prime example of the aforementioned, was a beautiful instance shared by the Savory family of West Linn. Recently, their son, John Paul turned 12 and had a birthday party to celebrate the occasion. However, in lieu of bringing presents for the big birthday boy, the family instead chose to use the teachable moment to share the story of Taylor & Graham and honored the twins by having all of John Paul's friends bring donations for the Two Angels Fund instead of himself. Selfless acts such as these never cease to amaze us. People like the Savorys and the many of you out there that have impacted our lives have helped to facilitate a situation where we can all accentuate and celebrate the good that is being done to make this a better place no matter what circumstances we face.

In related news, we'd also like to share a very, very special honor that Taylor and Graham recently received when they were selected to be part of the Wall of Courage Exhibit by the Children's Cancer Association as two of 25 Heroes for 2005. For more information see the following link: http://www.childrenscancerassociation.org/news_and_events/celebration_of_courage.html It's one of CCA’s biggest annual events—the Celebration of Courage. And it is held each September to honor inspiring local kids and teens as Community Heroes for their exemplary courage in the face of life-threatening illnesses. At the heart of the celebration is CCA’s Wall of Courage Exhibit, featuring portraits of the year's chosen Community Heroes, each of whom represent bravery in its truest form and remind us to live with joy in every moment. The next exhibit will be unveiled this fall at CCA’s annual Hero Reception—an invitation-only VIP evening event to acknowledge CCA’s most critical and compassionate event sponsors and supporters. We have all been affected by Graham and Taylor in many ways. However, this honor is particularly inspiring as they were both nominated by representative doctors from three separate medical groups in the area (Legacy, OHSU and Shriners). Thus, it is reassuring to know that even completely independent caregivers felt compelled to choose Taylor and Graham as their "hero" nominees.

Lastly, the waters have calmed around here of late. Although Taylor and Graham still fight a constant battle with regard to their pain management, they are resting comfortably for the most part. The only drawback has been the hidden idiosyncrasies that confronts one in this condition. While the last several weeks have been fairly good for the twins they are appearing to lose their ability to see. As their pediatric neurospecialist told us, "They haven't lost their sight--however, they've begun to lose the connection between what they're seeing and how their brains process the images that they see." As evidenced by his explanation, each day seems to bring a new set of challenges. Regardless, what remains constant is the unwavering bravery that these two little souls possess. Taylor and Graham don't stand, yet walk like giants. And in this world, they have been appropriately recognized as true "heroes."

April 17, 2003 Today, we would like to recognize a true champion in every sense of the word. On a rainy Sunday morning in Portland, Oregon, our dear friend, Debbie Smith ran a spirited half marathon (The Run for the Roses) in honor of Taylor and Graham which raised over $2,700 for the Two Angels Fund. Debbie, along with close friends, Stacey Ellis and Megan Flood, each wore t-shirts adorned with the faces of the twins while their fast feet and loving hearts paid special recognition to the lives of our beloved children....To Travis, Debbie, Ella and Bennett Smith and all of those who sponsored and shared in this endeavor--we thank you from the bottom of our hearts. Your contributions will long be remembered as each of you have touched us dearly. We are, on a daily basis, increasingly amazed by the myriad ways that you all have embraced our family and continue to honor the lives of these two little blessed angels.

April 13, 2005 (From Jenny) We spent the day with Graham and Taylor on Monday and they were both doing better. We got lots of smiles from sweet Taylor and she was awake for longer periods. Graham slept a little more than his sis but woke up here and there to flirt and charm us as usual. They both seem to be resting comfortably and their lungs are clear right now. We would all like to cheer my sister Debbie on as she runs a half marathon this weekend to raise fund for Graham and Taylor's Two Angles Fund. God bless...

April 7, 2005 (From Anne) The good news is that Kirsten got away to join Braden Anne in sunny California last Saturday night. The even better news is that after days of sunshine, rejuvenation and lots and lots of swimming for Braden they are headed back home today. Taylor and Graham were so well cared for by their Daddy and his crew of twin helpers. I was over there last night and was thrilled to see both Tay and Bubs awake and even got several smiles from Graham. They both struggle a bit with respiratory problems but fortunately seem to be back in a cycle of being more aware of what is going on around them.....Graham was watching his uncle Adam climb over the back of the couch as if to say "hey! you're not supposed to do that!" and anyone in Bunny ears gets a notice from sweet Tay.

March 31, 2005 (From Anne) I must first apologize for the lack of entries lately. Kirsten and Ian have definitely had their hands full and I have not been as diligent as I should be to keep the updates current. After Tay's set back and subsequent rebound, the entire Olsen family was able to spend a few days at the beach. That was a much needed change of pace. Taylor and Graham seemed to be their sweet selves, smiling once again at the faces of those they love. Easter gave them a chance to get out again with the whole family. Unfortunately, since Easter Sunday the twins have both had a series of tough days and nights. They both seem to be plagued with high fevers. It is unknown if this is a result of a minor virus that has gotten to them or if it has to do with the effects of the MLD on the temperature control center of the brain. Either way it has meant cool baths and worried parents. In addition, Graham has really not been awake since Easter. He has continued with his progression of a weakening of his respiratory system and last night again had moments where he stopped breathing. We definitely can see his little body getting weaker yet again. As you can imagine this has lead to sleepless nights and anxious moments for Kirsten and Ian. Kirsten and Braden Anne were to leave for Palm Desert tomorrow but now Braden will get some special time with Mimo and Popo alone while Kirsten waits to see if the twins will stabilize before hopefully going down in a few days. On a happy note - Kirsten had an ultrasound this week and told me they got some amazing pictures of the new baby!

March 18, 2005 "Then, when it seems we will never smile again, life comes back...." This was a quote from a card that we received recently that gave both Kirsten and I great pause as it speaks directly to our situation on so many levels. For four long days, Taylor Rian did not wake to see the light of day as she traversed (much like Graham a month earlier) through one of the dark valleys that she must confront with this condition. The rays of warm sunshine have enveloped us here of late and reminded us once again of the analogy between the changing of the seasons and the vacillating conditions of both Taylor and Graham. Just when we get used to the sun or the status of the twins, along comes the clouds and another change we can't foresee.

Spring has long been a time of renewal and reaffirmation of the true beauty of this wonderful world that we're all so blessed to be part of. For our family the term "hope springs eternal" has warranted greater meaning for one incredible reason. In this glorious season, the Almighty has graced us with the gift of another child. Yes, it is indeed true...Graham and Taylor will be playing the role of big brother and big sister as we welcome a new addition to our family in late August!

After several weeks of highly specialized clinical testing done at Thomas Jefferson Hospital in Philadelphia in conjunction locally with OHSU--we have learned that we will have a new baby girl who is, by the grace of God, MLD free. We couldn't be more ecstatic! We've often wondered, as I am sure most parents do, what God's plan for our children is. In actuality, what we've come to realize more and more is that maybe it is through THEM that God actually has a plan for US. We have been reassured through the teachings of the Twenty-third Psalm...”He leads us beside the still waters and restores our souls.” From our vantage point with the news of our new daughter, this has never resonated more clearly and explicitly. And most importantly, we are confident that for Taylor and Graham's sake, “surely goodness and mercy shall follow them all of the days of their lives.”

March 17, 2005 (From Anne) Tay seems to have stabilized no doubt in part to the many prayers for her and the strength of all the love she has been surrounded with. Both she and Graham have moved into a new phase in the progress of their condition. As so little is known about the exact stages we are left to wonder with each new change, what happens next? Only time will tell but for now we can relax a bit that this precious girl seems to be doing ok. Jenny said the other day "She is just like a little sleeping beauty." I know she feels all the kisses in her dreams.

March 13, 2005 (From Anne) The past week has been filled with ups and downs. The sunshine brought out Taylor's beautiful smile and she had some of her best days on Monday and Tuesday. By Thursday she seemed to find a new place to go and the hospice nurses describe her as "between here and where she is going." She is very calm and not in pain. While it has now been over a month since the hospice nurses seemed to think Graham was changing, he continues to remain fairly stable. His breathing is much more labored than Taylor's but he does seem to see what is going on and show us his great Bubbie smile. Graham's situation shows us that it is all a guessing game and only God knows when it is time to bring these little angels home. Ian and Kirsten are spending as much quiet time as a family as possible and appreciate all your prayers and words of strength, love and encouragement.

March 7, 2005 (From Anne) Yesterday while cleaning the garage we looked up to see the whole Olsen clan coming down the street! Ian and Braden on a bicycle with Popo along for the ride too. Kirsten was lagging a little behind as she was pushing both Taylor and Graham in the stroller. Remember that amounts to more than 60 pounds! It was so nice to see the whole family out enjoying the sunshine. Tay looks up at the sky probably wishing she could soar like the birds and Graham showed us his sweet smile. Kirsten and Ian say that Taylor continues to be very sensitive about being moved as her pain medication does not seem to provide as much relief as it does for Graham. Graham on the other hand still struggles with breathing but manages to keep his lungs clear so far. He often scares those who are with him as he pauses for a few seconds before taking another breath - makes everyone around him pause right along with him! Kirsten told me today that the twins are both "such strong, brave troopers through it all." All I could say is "So are you, Kirsten and Ian. So are you."

February 25, 2005 If you have the chance, pick up a copy of the Lake Oswego Review or West Linn Tidings. "A Circle of Love" was a wonderful story honoring the lives of Taylor and Graham complete with front page photo! We want to thank Julie Russell and Vern Uyetake who spent time with us last week and lovingly shared our story and some wonderful pictures with our community. In thanking them we want to invite everyone to check out our new gratitude page. We love the guestbook but know that there are some who wish to give thanks for the multitude of blessings that have come to all of us through Taylor and Graham.

February 24, 2005 After navigating some turbulent waters of late, Taylor and Graham have found a calmer place of being for the immediate moment. With this beautiful summer like weather we've had, the twins have enjoyed some long walks under the sunny blue skies. Graham still has had some lingering breathing problems, but currently seems to be fairly stable. He visited his pediatrician, Dr. Palmer last week who checked him over thoroughly and ruled that the little guy didn't have pneumonia and actually sounded quite "clear." That was a much welcomed response given the nature of his difficulties recently. That said, he still needs oxygen nightly to aid his breathing as MLD has compromised his respiratory more than any other side effect.

Taylor, on-the-other hand, has been feeling quite well given the circumstances. She isn't as animated as Graham but appears to have her pain management much more under control these days as the hospice nurses have upped her dosage from previous levels. Although she can no longer move her arms or legs on her own, she still loves to hear the pitter-patter of children playing amongst her and is always eager to show off her pretty smile when engaged by a friend or loved one. Taylor has an enormous heart as her most endearing quality is simply, her gentle presence. Some folks are most readily seen, while others are heard, and then there is Taylor - whose presence is most recognizably - in a word: felt.

February 17, 2005 In Harold Kushner's, The Lord is my Shepherd...Healing Wisdom of the Twenty-Third Psalm, I found great parallels between his beautifully crafted words and the situation that confronts our dear children, Taylor & Graham. In particular--I believe this Psalm to be most relevant in embodying all of the emotional characterizations that one deals with when faced with a similar circumstance like ours as "it acknowledges the emotional darkness we find ourselves in when a loved one is dying" as typified by the refrain: "valley of the shadow of death."

However, as Kushner so succinctly expresses, instead of cursing a God who permits our loved ones to die, it introduces us to a God who is with us in our pain, and who leads us through the dark valley back into the light. It summons us to live bravely, to go forward with our lives in the confidence that WE are not alone.

On Friday, February 11th, courageous little Graham literally "walked through the valley of the shadow of death." Undeterred though, he walked away from death's door, deciding his work was not yet done here amongst us as he joyously embraced the parade of loved ones who came beckoning his bedside. In one cathartic instance--we witnessed both the fragility of life in conjunction with the enduring strength of the human spirit. Braden, oblivious to the seriousness of the situation, lended levity throughout the weekend as she entertained the masses with her usual wit and celebrity. All the while, the cerebral Taylor mused about the onlookers smiling, enjoying the warmth of the love that emanated from so many.

To this day, we don't know what tomorrow may bring. However, for now we remain eternally thankful for the time that we do have with Braden, Taylor and Graham for their lives have been marked with such purpose and guided by strength drawn from a greater source.

February 13, 2005 After a very scary Friday night Graham rebounded to show his precious smile to the many, many visitors who came to see him and Taylor this weekend. Taylor had a much more comfortable day today and seemed to enjoy all the attention. The prayers of so many are undoubtedly being felt by the twins.

February 11, 2005 Our sweet Graham has had a harder and harder time being awake for the last few days. In addition, he struggles to breathe and right now needs lots and lots of prayers.

February 8, 2005 Greetings to all of you near and far. Things have finally settled down a bit as Taylor and Graham are finally back home, settling in and for the most part remain pain free. Although the central lines that the twins now have, have eased their struggle with debilitating pain--the continual morphine drip has taken away quite a bit of their alertness and robbed them of some of their sensory perception.

Graham can still smile and give a small giggle once in a while, however, he has lost most all of his ambulatory control which is symptomatic of the progression of this condition. We are now to the point where we communicate by simple facial movements as neither of the twins has the ability to express themselves verbally. Taylor is actually quite good at this as she seems to be real content just "taking in her surroundings" these days as she has seemingly found a calming sense of place brought on by being much more comfortable (pain free) in addition to finally reuniting with her familiar confines. After many days spent in and visiting the hospital, there simply remains no place like home. And for Braden, Taylor and Graham, this is where we can collectively, as a family, feel "normal" no matter how atypical our household environment truly is. We wish you all could share in this joy that we witness on a continual basis as our lives are enriched each day by the many blessings that these two amazing children (along with Braden) have bestowed upon our family.

As always, along this journey we have been overjoyed by so many of you that have touched us in such beautiful ways. To Janet Ramey and all of the families and children at Our Lady of the Lake, God bless you for all of your generosity and thoughtfulness. Kirsten and I were so touched by your kind gestures and for thinking of our dear children when you're all so busy with your own. We are forever indebted to you folks for showering our entire family with such love and compassion. Please accept our deepest gratitude of "thanks" from each of us.

As we have wandered through this maze of life, we have been privy to many conversations with lots of you out there regarding how each of us internalizes our thoughts in different ways when faced with life's tough lessons. Some of us wonder, what if? Some of us ask, why? And some of us, including myself, find solace in the words of others representative of our own thoughts of which we seemingly cannot so eloquently express. For both Kirsten and I, we have always felt since hearing the fateful news of our children's health (and ultimate future) that we were living but a "dream within a dream." For those of you who wonder aloud what this walk feels like--these words most typify the struggle that we deal with on a daily basis....

A Dream within a Dream

Take this kiss upon the brow!
And, in parting from you now,
Thus much let me avow-
You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away
In a night, or in a day,
In a vision, or in none,
Is it therefore the less gone?
All that we see or seem
Is but a dream within a dream.

I stand amid the roar
Of a surf-tormented shore,
And I hold within my hand
Grains of the golden sand-
How few! yet how they creep
Through my fingers to the deep,
While I weep- while I weep!
O God! can I not grasp
Them with a tighter clasp?
O God! can I not save
One from the pitiless wave?
Is all that we see or seem
But a dream within a dream?

Edgar Allen Poe 1849

January 30, 2005 Taylor and Graham are now home, resting comfortably for the first time in weeks after a five day stint at Emanuel Children's Hospital. Because of their increasingly difficult pain management/control issues, the twins had permanent central lines installed which give them a constant intravenous morphine drip 24 hours a day.

Compounding the twins' stay was the fact that Graham was also felled by a collapsed lung and an ear infection while hospitalized. Needless-to-say, both have "come around" and are now home under the supervision of loving family members, a team of hospice nurses and a nightly member of Interim Healthcare's respite nursing unit.

Although it has been a very tough week, we are most thankful for the twins' newfound comfort level. Although they are still a bit "snowed" by the acclimation process of central line pain management--they are growing ever more comfortable with each passing day. Nights of agonizing coupled with utter discomfort have given way to a much more manageable level of comfort care.

In other related news, Kirsten, myself, Braden and the twins would like to send out a special thanks to all of you at Rosemont Ridge Middle School for the tremendous outpouring of support that you have shown our family. Niki Johnston--you are truly amazing--and to all of you parents and children in the West Linn community, thank you from the bottom of our hearts for reminding us of the goodness that resides in so many of you all. Although we couldn't be with you on Thursday to see and greet your many familiar faces, we were overwhelmed by all of your random acts of kindness. What a true testament of community...you folks have touched us in so many ways and we cannot begin to thank you enough.

As we go forward, we are facing an ever increasing battle with this devastating condition. But an old passage that has never left me has given us comfort during this most difficult time; that being the Serenity Prayer which states as follows: God grant us the serenity to accept the things we cannot change; courage to change the things we can; and wisdom to know the difference.

To each of you out there, you have ALL made such a significant difference with regard to the wisdom and courage that you have bestowed upon our family...whether it has been a simple phone call, a meal delivered to our doorstep, a donation to the MLD Foundation in Taylor & Graham's name or simply a silent prayer asking for God's peace. We thank you for restoring the notion that although we cannot change the outcome that we are faced with, we all can make a difference in this world--no matter what the contribution.

January 20, 2005 Taylor and Graham had surgery yesterday and are now much more comfortable with a much more controlled method for giving them pain medicine. They should all be coming home tomorrow! Yeah! The whole family thanks everyone for all the love and support. (anne)

January 18, 2005 Taylor and Graham were admitted to Emmanuel Hospital last night. They have been experiencing an extreme amount of pain and discomfort that the oral morphine cannot seem to control. They will have intravenous central lines put in which will allow for the morphine to be given directly into the blood stream. Kirsten spent the night there Monday and Ian is there tonight. It is expected that Taylor and Graham will not come home until Friday. Please pray for the whole family as they continue with the horrible progression of this disease. (Anne)

January 11, 2005 With the holidays over things have slowed down a little. Ian has gone back to work which can be good and bad. Good to have the opportunity to get out of the house and take care of his businesses and bad because he misses being with the twins and his day is definitely not over when he returns back home each evening. Kirsten has a constant supply of helpers during the time Ian is at work and they are so appreciated. The twins now have nighttime care four nights a week which helps Kirsten and Ian get some much needed rest. In addition, Hospice is now working with the family which will help a great deal in communicating with the doctors and with keeping the twins comfortable. Taylor and Graham have become a little partial to being held and are not too happy when laid down or put in their wheelchairs but knowing they are held close by those who love them is a gift we can give them (even though it can make getting other things done difficult!) Braden is definitely adjusting to the changes in her family and continues to provide a whirlwind of activities and entertainment for everyone. I even heard one of her grandparents call her "the library book" because so many people want to spend time with her you have to check her out! (written by Anne)

December 30, 2004 Hello everyone. Graham and Taylor went to see Dr. Barclay today and both have gained back all of the pounds that they had lost since our trip down south. Yeah! In fact, Bubba is actually starting to look too much like his Dad whose done his best to put on a nice winter coat this holiday season :)

Unfortunately, we are not currently having as much luck getting either of the twins settled with a specific combination of medications that will make them comfortable. Some days are good, some not so good. And there doesn't seem to be any rhyme or reason as to why the same drug combinations don't work day to day. In conjunction, we are having such a rough time getting Graham to bed by a decent hour that it has left us with no other option but to employ nursing care in our home during the evening hours. While this has admittedly taken a bit getting used to (having overnight guests in our home), it has offered us a much needed reprieve to the sleepless hours that we've been enduring for the last months.

In other news, the twins recently received customized wheelchairs with special fittings so they can sit upright and engage others while playing with their favorite toys. Taylor has particularly enjoyed her new "wheels" while Graham is slowly working into his. The twins' therapist at Shriners Hospital (Sally) was instrumental in getting the kids outfitted for these special chairs so we owe her a big "thank you."

Taylor and Graham also continue their hydrotherapy once a week which really helps in loosening their tone while stretching them out. They also continue to smile and enjoy the company of those they know and hold dear to their hearts. These children are a true testament to the power of the human spirit as they lift us all up through their unconditional love.

To that avail, to all of you out there near and far....thank you for your continued blessings. Thank you for thinking of us and keeping our children in your thoughts and prayers. If Graham and Taylor could give you all a big hug and a kiss they would because they cherish both you and the gift of this glorious life to the fullest. On that note, cheers to all of you who have touched our lives in the myriad ways that you have. God Bless you and may you and yours enjoy a healthy and prosperous New Year.

December 21, 2004 Happy Holidays everybody. 'Tis is the season to give thanks...so we'd like to take the time to observe some of the random acts of kindness that we have received from you folks in recent weeks.

First of all, we'd like to express our humble gratitude to Ron Chappell, Rick Hennessey, Rick Hunt and the rest of the coaching staff along with the young men of the West Linn Football Program. Your kindness and generosity will be remembered for a long, long time. We are honored to know you and remain grateful for you recognizing us during this trying time. We are proud to be witness to the outstanding leadership and selflessness that your kids and program continue to foster at West Linn High School.

Secondly, we'd like to recognize the caroling Our Lady of the Lake parents who paid us a visit last Sunday bearing gifts for the kids while singing songs of the season. To each and every one of you, you touched our hearts and put smiles on all of the kids faces. What more could we ask for? That was truly a tremendous, yet unexpected outpouring of love and affection. Thank you kindly all.

Lastly, we'd like to honor Pastor Mark Knutson and the entire congregation of Augustana Lutheran Church. For those of you who missed it--as God is our witness--history was made as 10 family members of the Olsen, Braden and Billeter families were baptized on Sunday, December 19th. Three generations of the Olsen family were baptized including: Craig, Sally, Ian, Braden, Taylor and Graham as well as Joshua Billeter along with Liz, Gunnar and Lily Braden. It was truly a glorious day...A day that none of us shall ever forget.

We'd also like to thank Corey Schreiber and the staff at Wildwood ,as well as Jim and Delta Billeter, for helping us all share in this celebration of God's gift of love and life. As morning turned to afternoon--we, as a family laughed, cried and gave pause to recognize that which is most important in this world...That the greatest gift that we have is each other.

On that note: To our many friends and family, we'd like to send a heartfelt message of love and hope to all of you this holiday season. Peace be with you all.