Letter from the Knapens

I received the year end letter from JW's mother - Anne Marie. Would like to share with you.

There are a whole bunch of nice garphics. I will try to load them later.


Dear all,

2006... A year filled with “for the first times”... For the first time towards, for the first time without, for the first time with, for the first time from, for the first time through, for the first time for, for the first time against, for the first time on top, for the first time under... Nothing but firsts...
Our girls went to Middle School (sixth grade) for the first time and Alexander to first grade...
All three of our earthy children got their first taste of tennis (and they loved it!); Alexander finally got permission to attend his first real drum lesson (how exciting!); Helena and Elisabeth performed in their first piano recital with their wonderful teacher, Melissa Lin.
For the very first time in years, we were able to visit our family and friends in Belgium and for the first time, we traveled with new friends (Dr. Wong, Vicky, Wijan, and Nancy) – and that was fun! We enjoyed a first family trip without the physical presence of JW...
We are still working hard towards the big day of the groundbreaking of JW House; we’re so grateful and happy that we were able to reach and break through the one million dollar barrier and still, we feel thankful and thrilled to so see our piggybank getting fatter...
Jan-Willem became our first Knapen-child to graduate from high school and the first Belgian citizen ever to receive the most precious space and a beautiful tree on Bellarmine’s campus.
For the first time in our lives, we learned what real true Love means --- and pain --- and ups --- and-no-way-around downs since from now on, we would never be able again to physically touch, hug, or kiss Jan-Willem – or to simply scratch his back, his arms, or his legs...
And in between all these firsts, we learned to see, hear, feel, taste, and smell Happiness and to cherish it. Happiness... In every sunflower, in every seed... and in every heavenly dancing butterfly... We learned to share tears of sincere thankfulness and pain and to bear them together; we learned to discover the beauty of Life. We learned more than ever before to live Life like JW did and we managed in a spontaneous way to keep our dear brother and son involved in our daily concerns and rhythm...
I can honestly say that life kept on laughing in our hearts and souls and that we were able to seize each new morning. Sometimes, we felt desperate and in tears but we always managed to end up smiling. Despite everything. We want to thank you for your support at any moment! We want to thank each other and most certainly, we want to thank the Lord! --- We definitely want to thank our angel JW, for taking care of us, day and night, and for reminding us how one can also do it, how one can make things work better...
We love you all; we love each other; we love the gift of Life and Memories!
Last but not least: we profoundly want to thank you for every effort you contribute towards the realization of JW’s dream! Together, we can do it; we will Never Ever Give Up!!!

We wish you Love and Peace in your hearts and on Earth!
Merry Christmas! Have a wonderful year 2007!

Geert and Anne Marie,
Helena and Elisabeth,
Alexander and Jan-Willem who lives in us forever now

On January 7th at 6pm,
we will remember and celebrate
the beauty and the gift of JW’s life
and his wonderful Dream, the JW House…
Church of the Jesuits
Waversebaan 220, 3001 Heverlee, BelgiumEverybody is welcome!

Advisory Board Meeting 12/13/06

I walked in the meeting without a specific agenda. When I walked out of the meeting, I felt we had a good meeting.

Mary Ann, Sue, Bev from Kasier were there. Barbara, Anne Marie, Vicky and myself were there from the JW House.

Mary Ann and Sue started by giving us lead to different people or organization that may have an interest to help build the JW House.

We discussed the preliminary bid that came in from the builder. Barbara reported that with the upcoming meetings with the builder, more serious discussion on the cost of building will come.

We begin a discussion on the future of the JW House. Now most likely we will have the house. What follows would be programing and future on going funding of the JW House.

We have a preliminary budget but how can we ensure a continue stream of money in support of the continue running of the house?

We agree to continue this discussion in our next meeting.

First Frost at the JW Friendship garden

Some one donated a tree for the garden. Its is domant now. Now the frost has come. I do not know how long the flowers can last.

3rd Annual JW House Music and Family Festival

We had a wonderful event. More pictures are posted at: http://fcaw.smugmug.com/gallery/2259511

Lets start from the beginning. We started out by recruiting our committee. We ened up with Debbie, April, Ann, Ann Marie, Vicky and myself. We met at least once a month about six months before the event. Later it was more like every two weeks.
Kaiser was kind enough to allow us to use the Conference room for our event. We then begin to recruit performers.
KJ, Alum Rock Christian Church Worship team with Arden as our contact, the Candy Cane Gang, Santa Clara Kaiser Choir, Alison and Megan, Helena and Elisabeth and St. Martin of Tours Music Group all decided to help.
Vicky had the great idea for the Candy Cane Gang draw pictures for the Twelve Days of Christmas. You can see them in my photo album.
April heads up the festival part. She design games which are simple but with much fund. One of the projects kids did was to use hand prints to make out a christmas tree.
She also was responsible for decoration and work with the volunteers. She did not have much sleep when she tried to finish with decoration just before the event.
Ann was responsible for gift drawing and she spents hours designing and making a fishing game booth.
On the day of the event we were there early, trying to decorate and get organized.
Kaiser volunteer brought in a lot of cookies. They came through every time for us.
Guest begin to arrive. Marc - our volunteer MC began with his jokes and kept the event going.
KJ was awesome. He was followed by beautiful music made by the Alum Rock Church.
Of course I love the Candy Cane Gang's performance. The Kaiser Choir was responsible to set up the whole sound stage. Thanks Don. Alison and Megan were great flute players. Helena and Elisabeth sang the beautiful - the gift goes on. St. Martin of Tours Music Group sang a few traditional christmas song as Santa appeared miraculously.
Anne Marie brought out the new JW House update. That was the high light of the day.
One glich was that we could not find the coffee that we had prepared. Luckily, Pediatrics departemt came to the rescue. We had coffee for those who wanted it.
Our festival follows where kids can play different games. There are Holiday Tattos, Merry Christmouse, JW Hugs & Kisses, Angel in My Pcoket, Pretzel Wreath, Candy Cane Lane, Photos with Santa, Video Tennis Anyone?, Trim-a-Tree Hand in Hand. Many voluteer help to put this on, thanks to every one.
We ended with a gift drawing. Kids were allow to help draw out winning tickets. That was fun.
We ended about 5 pm. After every one was gone, the committee came together again. Clean up time took a little over one and a half hour.
We then retired home. The event was set to get every one together and enjoy what JW enjoy most. We accomplished that. Thank you April, Ann, Vicky, Geert, Anne Marie and all the kids.

Other pictures can be found at: http://fcaw.smugmug.com/gallery/2205110

mailing of the holiday letter

Over the weekend, we had approximately twenty people putting the mailings together. Jan helped us organizing the whole mailing.
On Monday, I took it to the bulk mailing station at the San Jose Post Office. I had a surprised waiting for me. All ended well. Now we have to see how much respond we will get.

Holiday festival meeting

Nov 9th Holiday festival meeting.
We discussed on the different music group and dance group. There will be at least over one hour of music. We will have a singing group composed of my patients. There would be two dance number. One would be tap dancing and the other hip hop.
There will be many activities for young people. The Kaiser volunteers will be supplying us with refreshment.
Now we need poeple to come to such a nice event. Lets hope for the best.

Women's health fair

Other picture can be seen at: http://www.smugmug.com/gallery/2259483

10/28/2006
We participated the women's health fair. We got wonderful help from volunteers. I learned a valuable lesson on how to work with others. It include have a more precise ground rule. Follow the rule that has been set. I unknowingly hurted some feeling. I had since appologized to the person. I learned something from it. My hope is that this person would forgive me and go forward to help JW House together in the future.

Meeting with Kaiser

Oct 27 2006
We had a meeting with Mary Ann, Bev, Dr. Drey to give them an update on the progress of the planing of the JW House. We also begin our discussion on operation of the house. We presented to them issue like length of stay, criteria for stay, cost of stay and security. These are all preliminary discussions with further discussion needed. We even mentioned ground breaking and opening. Even though its only one sentence discussions, it just tell us the house is becoming a reality.

October JW House board meeting

Finance:

We are approaching our goal of 1.5 million with steady pace. I feel that we will reach it by next year.

Events:

We are gearing up for the golf tournament. First meeting is coming
up soon. We are considering other events. We discussed the feasibility of having Nestldown as a event again. The timing of the event posts a problem. It is right after the golf tournament. I feel that we would have spent a lot of energy in getting the golf tournament going. We do not have the men power to make it a fund raising type of event. Would it be possible to use it as a thank you party for the volunteers? It will cost a lot to put this up. Is it financially responsible to do that?

Construction:

The drawing of the lay out of the building is coming along.
The building committee has been meeting a lot. A lot was done. We discussed whether we should have one or two public bath room in addition to the bath rooms we have already for each guest room. I hope that we can squeeze in two bath rooms.

Budget:

We agree on a budget for the first year. The goal is to make sure
JW House can manage the finance so that it can survive. We will present it to our advisory committee for consideration. The advisory committee is a committee we form to share information and cooperation between JW House and Kaiser. We also discussed about future fund raising efforts. Should we have an independent fund raising arm?

Fund Raising:

Belgium golf tournament raised over 6000 dollars for the JW House.

The meaning behind the JW House logo

Recently, Anne Marie - JW's mom share this with me. I cannot help but want to share it with you too.

The making of the JW House logo…

It is August-September 2004. JW comes out of a coma and once again faces huge life threatening challenges. He not only has physical problems to deal with, also his memory has to recuperate and he often has trouble getting out what is inside his mind. His hands are shaking at this time of his life, so drawing the logo himself is extremely difficult – if not impossible. We’ve learned to help though and so far, with a lot of patience, love and perseverance, we have always been able to succeed. We quickly learn that getting the logo out of JW’s creative brain and onto a piece of paper is a new experience – and quite a challenge for us, his parents and helpers.

This is our story, a story of dreaming, dreaming together…
Since I find out he has a childish image in mind and bright and happy colors, I ask his sisters to bring me some of their most colorful picture books (kijkboeken). We go through lots of them, until I open “Designed by God – so I must be Special”. This is the book JW used to read for his sisters over and over and all of our kids just loved it. It in fact is a very happy book!

These are the exact right colors and this is what JW wants:

A House ---
Because that is what his dream is all about: building a home away from home.

A red house ---
Red is the color of the heart; this is a house with a heart!

A red house (with a door, a doorknob and windows) ---
You are welcome to join us!

A red house (with a door, a doorknob and windows) with smoke coming out of the chimney ---
There is a fireplace burning inside the house; people are gathering around it and talking and loving each other and sharing good feelings; it is warm in there and cozy; it is good to live there!

A fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney ---
Because that’s just him: a guy that loves to have fun ad make jokes and surprise people by what you can do even when your foundations are not so very solid.

A fun looking red house with (with a door, a doorknob and windows) smoke coming out of the chimney on a hill ---
That’s life: ups and downs but after every down, there is an up!
A fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney on a green hill ---

The grass means life; the house must live, blossom!
A sun above and in a fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney on a green hill ---
We want light, brightness, sun – everywhere: outside, in the house, and in our hearts.
A smiling sun above and in a fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney on a green hill ---
Always look at the bright side of life! Shine with the gift and talents you have (left) and don’t sob over things those you never got or lost.

A cloud next to a smiling sun above and in a fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney on a green hill ---

Sometimes clouds come over us or into our lives. It is our challenge to overcome them.

A blue cloud next to a smiling sun above and in a fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney on a green hill ---

Blue makes the cloud less threatening, more friendly; it is the color of the sky, of heaven and of faith; blue is the color of the oceans; it symbolizes trust and loyalty, wisdom and confidence, intelligence and truth, and blue it is the color of Bellarmine!

A blue cloud next to a smiling sun above and in a fun looking red house (with a door, a doorknob and windows) with smoke coming out of the chimney on a green hill above a wavy JW House ---

Dreams aren’t straight, they wave; the house is my dream…

Are you still with me?

I hope next time you look at the logo, you will feel a JW-twinkle of in your heart…

Love,

Anne Marie, aka JW’s mom …

St. Martin of Tours Home tour

It was really an honor and previlege to be invited to have a display table at the home tour. This has been our second year of being invited.
It was so wonderful that people come up and wish us well and had been very supportive.
Some would come by and said "oh, I have the sweat shirt, the t shirt, wrist bands - every thing".
Thank you, Thank you and Thank you.

We need water

After the JW garden was planted, we need to water it.

Here's are some pictures showing our plight and our ability to work through getting water to the plants.

Thank you April

http://www.smugmug.com/gallery/2014494

Men's health fair

The Men's Health fair was held on the same day as the planting of the JW Garden. I have to rush from one place to another. I helped Pam to set up the table then I have to rush back to the JW Garden planting. The Men's Health fair request our presence by Noon. We would be introduced to the key note speaker Steve Young. Once I arrived at the garden, I saw the clock ticking. My job is to make sure the Knapens get to the Men's Health fair by twelve. The problem is the Knapens do not know that. They were happily planting the garden while I was sweating for time.

I saw that they enjoy the planting so much that I felt guilty in asking them leave. I suggested to Anne Marie that may be she should stay at the garden and forget about the Men's Health fair.
Luckily, the planting of the garden ended just in time and we were able to get to the Men's health fair.

It would have been a big mistake if we did not show up. Pam, the Knapen family and Jazimine all were able to meet and take picture with Steve Young.

Whats even better was that Steve Young was able to raise some money for the JW House by auctioning off some signed football. You can see the picture when Steve young was auctioning off the football. The link is at the end.

When Steve Young speaks, one of the Knapen kids asked him a profound question. You can find out who asked the question by looking at the pictures. If you want to know what was the question she asked, you have to ask me. You can see me smiling in the back.

You can also see pictures of my helpers moving all the merchandise from one place to the other.

At the end of the day, I was tired by throughly enjoyed the day.

http://fcaw.smugmug.com/gallery/2014430

JW's Friendship Garden

These two pictures are from Santa Clara Weekly

I had been working with Jim and Royal to get the walkathon going. They are optimist who has been helping with many of my patients.

Our plan was to have a walk to raise money.

At the same time we would like to plant a garden telling others that the JW House is taking shape.

A week before the walk, the optimist was there tilting the dry soil to form a garden. A wonderful landscaper donated some top soil and all the flowers.

Link to picutures on preparation of garden : http://fcaw.smugmug.com/gallery/2018102

I had a busy Oct 7th 2006. Woke up early because I have to pick up Jazmine and my other helpers from Morgan Hill. Then I drove to the hospital to pick up enough merchandise for two JW House display tables.

Ann met me at the Marriott to pick up half of the merchandise to set up one table at the Optimist walkathon and I stay behind to set up the other table at the Men's Health Fair sponsored by Kaiser. I will have a different post for the Men's Health Fair.

The walkathon started at 9:45 am. We walked from Central park to the Kaiser Homestead campus. It took up over half an hour to get there.

Waiting for us were flowers and a garden plot that was ready for planting.

We asked the volunteers to write down name of people that they want to remember next to the plant they planted.

The center brown pot was special for Lisa and Stephanie. They care for me so much that they donated some very special soil for the garden.

April help raised money to start this garden and she came back the next few days to help us water the garden.

If you like to see picture of the garden please go to this link:
http://fcaw.smugmug.com/gallery/1990761

Newsletter mailing

Vicky and Wijan wrote and did page layout for the newsletter. I love what they have done. Vicky really is a talented writer.

After we received the newsletter back to the printer, its my turn to go to work. The problem is I have never done any bulk mailing before. Luckily, Debra and Barbara already set up an account at the post office for our Non Profit bulk mailing. I do not have to go through the step again.

The morning of the mailing, I went to the post office and try to learn what do I need to do. It took me two tries to find the bulk mailing office. Turns out it was at the back of the main post office. I was in luck. The lady there was very kind and patient. She showed me the forms that I have to fill out. I have to find out how much each newsletter weight. I find out depends on how we bundle the newsletter we would get different rates. The cheapest rate is for those newsletter with barcodes and sent to the same zip. The kicker is to get that rate we have to have more than 150 newsletter to that zip.

She also showed me the different boxes that I need to put the newsletter in. How to seperate them or combine them. She showed me which box need to be tide and which do not. Lastly, she gave me some postal stickers for the boxes.

She even find my account number for me. She help me filling out the forms.

It was a quick lesson on bulk mailing.

I went to lunch with my wife. Bought some cookies and ice. Then head on to our JW House office.

By the time I got there, Vicky and Michelle were there already. Together there were other volunteers.

There are more than twenty of them. Rose Marie, Grant and his mother Ann, his two brothers, Rochelle, Dee Dee and her husband, four to five Kaiser volunteers, Mark, Jeanette, others from JW's church and of course Anne Marie and Alexander. I cannot remember all the names. We also forget asked every one to sign in.

We were able to place the stickers in each Newsletter in less than two hours. The problem was the task of seperating each Newsletter into zip code. Since this was the first time I had ever done this, I really do not know what to expect. The volunteer was very nice. No complaint. Later I found that I really do not need to seperate them into each zip code because I do not have 150 in each zip code anyway.

Later, I was advised that I should have sort the sticker first instead. This I would do the next time I do it again.

After all the volunteer left, I was really too compulsive. I and Vicky started to count the newsletter again. It took us some time. I really have to thank Vicky for sticking with me to the bitter end.

She help me with the boxes of Newsletter. I was able to get to the post office with plenty of time to spare.

The post men check the newsletters by opening one of them. They want to make sure these are not ads etc. He check the weight that I claimed-each newsletter weight 0.02 oz.

He showed me where to deposit my check.

My first bulk mailing was done. I hope you received our September Newsletter. If you like to received our next posting, please go to the JW House web site. There will be information as to how to contact us.

I want to thank all the volunteers for their help and patience.

JW House began when JW Knapen a 14 years old boy with brain cancer came in my office and gave me 10000 dollars to begin our dream project. Since that time he took me into a world that I have never dream of. Please come with me and travel this wonderful journey with me.
Thanks for visiting.