Many of you are wondering how we are doing. I think the best answer is OK. We are making it through. Each hour can bring a different feeling and a whole range of emotions. We take it day by day, or even minute by minute. We continue to be comforted by the outpouring of tokens of sympathy and appreciate all the cards, meals, baked goods, gifts, flowers and prayers.

Christmas Eve day we spent together. We had a different kind of laid back day. Unfortunately, Ryan was sick before Christmas and Kurtis came down with it Christmas Eve day. We hung out, the kids played and watched some TV as Kurtis wasn't feeling all that great, had naps and laid low.

One other piece of information that some of you may not know is that Tom has a new nanny for the boys. Annette and Tom found Alyssa (hope the spelling is OK) through one of the in-home nurses that came for Annette. The nurse knew they were looking for someone and connected them to Alyssa. The Tuesday before Annette died, she called me and told me that Alyssa had agreed to come and work for them. I could tell that she was so very happy and relieved that they had found somone so quickly, especially since she had phoned me, which she hadn't done for a little while. This was, I believe, one of the final pieces that Annette needed to feel at peace that everything was in place for the boys. Alyssa has many wonderful qualifications, she is able to drive the boys places if needed, she has worked with people with special needs and seems to be a perfect fit. She moved in over the past weekend and is slowly getting to know the family.

Tom and the boys are keeping busy during the time off of school. I think having this time is nice as an adjustment period before jumping back into school and work. I also have enjoyed a slower pace at home to reflect, rest, clean, shop and be with my kids. We continue to covet your prayers.

Wishing you the peace of Christmas,
Lisa

Welcome to Holland

Those of you who came to the church might have seen the table displayed with many tulips, a poem and a picture. Some of you might have gotten an explanation, but others might not have been aware of what that was all about.

There is a poem entitled "Welcome to Holland" by Emily Kingsbury that likens the journey of having a child with special needs to a trip. After Annette had Ryan, she became fond of this poem. She also reached out to an internet group that was made up of women (and some men) from all over North America and even the world and became very close friends with them. Together, they shared their journeys. Two of these special women even made the long trip up from Indianna to attend and speak at her funeral on behalf of everyone.

The poem means a lot to many of them. Annette's favourite flower became a tulip because of this poem. Over 25 women from all over Canada and America each sent one single tulip in a bud vase. Together, they made a beautiful arrangement and I know Annette would have been very touched. That is the story behind the stunning table of tulips, which included the poem. Thank you friends, for that wonderful display of flowers, but more importantly for your love for Annette, which was born from the wonderful journey you all share.

Lisa

WELCOME TO HOLLAND By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And for some, the pain of that will never go away... because the loss of that dream is a significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

What a Day!

We are so overwhelmed and touched by the outpouring of love from so very many of you. The church was packed to the rafters today. I thought the service was so beautiful. Thank you for all of your thoughtful tokens of love and sympathy. Words cannot express all the things we felt yesterday and today.

I have many thoughts and things to share with you about the past six days. However, those will need to wait until another day.

For tonight, a sincere thank you and a wish for God's peace.

Lisa

Annette Lammer

LAMMER Annette (Bruinsma) Peacefully at home, after a courageous battle with cancer, on Sunday, December 16, 2007, went to be with her Lord, at the age of 41. Annette is the dearly loved wife of Tom and beloved mother of Kurtis and Ryan. Dear daughter of Gordon and Winnie (2006) Bruinsma and sister of Lisa and Steve VanderKuip. A favourite aunt of Sara and Connor. Dear daughter-in-law of John and Theresa Lammer and sister-in-law to Andy. The family will receive friends from 1-4 and 7-9 on Tuesday, December 18, 2007 at First Christian Reformed Church, Guelph, 287 Water Street. The funeral will be at First Christian Reformed Church on Wednesday, December 19 at 11:00 am. Interment to follow at Woodlawn Cemetery. If desired, memorial donations may be made to the Canadian Down Syndrome Society, Waterloo Regional Down Syndrome Society, Canadian Cancer Society or Heart & Stroke Foundation.

Dear family and friends,

Annette went to be with her Lord at 1:00 am this morning, peacefullly. We are grateful for her peace, though we miss her greatly already.
We will post more details as they are made.

Dear Family and Friends,

"I know the Lord is always with me. I will not be shaken for He is right beside me." (Psalm 16:8)

This past summer, we received the disappointing news that the trial that Annette was on was no longer keeping the cancer at bay. We continued to hope and pray for a miracle through a new trial. This fall proved to be a tougher time for Annette, and she has become very frail and weak. The cancer continued to progress.

We now find ourselves at this time having to share this most difficult news with you. Annette, at present, is comfortably resting, surrounded by her family who loves her dearly. However, it seems her time here is ending.

We have been blessed to have this time to talk and share, laugh and cry together, and cling to the hope that soon she will be healed in heaven.

We spoke about her blog this afternoon. Annette wanted to wish everyone her love. She is so very thankful for all of you and for all of the support she has received over this time.

She is surrounded by her family at home, which is what she wants. Visits aren’t practical for Annette, but we will keep you updated through her blog.

Thank you for all your support, love and prayers.

Annette, Tom, Gord, Lisa and families

It's been a tough haul...

It's been hard work getting better and I'm still not there.

My legs still are the size of tree trunks (and they look like them too). The doctor decided today that the diuretics weren't doing any good so we agreed to stop taking them. Instead I'm too wrap my feet and legs in compression bandages and see how that works. (Chris - I think you suggested that???).

I'm also needing oxygen regularly. That's something I haven't shared here before. I started using oxygen at night about 5 weeks ago. Now I've started needing oxygen day and night all the time. The oxygen helps so much with sleeep and daily activities.

and finally, the other tough thing is that we're losing our nanny. :( She's heading back to school in January and giving it another shot. I'm happy for her but sad for us. We now need to find another nanny - and soon!!

That's all for now. Sorry it's such a short one but Kurtis just came home from scool and I've got to help getting snacks!

I'm back!!

I finally came home yesterday at 6:00 - yippee!! A huge thank you to Lisa for updating my blog and keeping everybody who reads it up-to-speed on what was happening. I'm feeling so much better today although I will admit still to fatigue....that and huge tree trunk legs that I've got to put up and rest.

It's hard to stay still when you're a Mom and you see tons of things to do, but I have to stay still if I want to beat this fatigue and if I ever hope to get the swelling in my legs to go down.

Thank you again for all your support - it continues to mean a lot.

Peace and love,
Annette

Better today...

Dear Family and Friends,

Annette is feeling better today and for that we are very thankful. She is much more alert, talking, walking the halls and eating well. We know she is feeling pretty good when she starts bossing Dad and me around :).
I printed all of your prayers and well wishes and left them for her. She is very thankful for all of them. She hopes to return home Monday or Tuesday. She is not able to come and blog yet on her own, but hopes she will be able to soon.
Please continue holding her up.
Lisa, Annette and family.

Genesis 28:15 "I am with you and will watch over you wherever you go...I will not leave you until I have done what I have promised you."

Dear Family and Friends,

Well, I wish I could come here and post a wonderful update, unfortunately, Annette is still really struggling with extreme fatigue and drowsiness. They are tinkering with her medication, but it must be done carefully and slowly. It appears that she will be there at least through the weekend.

Please pray for patience for her, and that very soon she will be able to come home.
Lisa

Update

Dear Friends and Family,
It has been a difficult week for Annette.
Last weekend, Annette began experiencing severe symptoms of extreme fatigue, confusion and disorientation. She was taken by her family to the hospital where she had already had a CT scan scheduled for that day.
Her oncologist decided to admit her in order to run some more tests to get to the bottom of the issues.
Today, the results were shared with us and the news was somewhat encouraging. Fortunately, although the cancer has grown, it has not spread to any other major organs that they could see. The disorientation, confusion and extreme fatigue is likely from too much medication in her system.
Annette had radiation 10 days ago to help manage some symptoms. Apparently, when the tumors shrunk, her body no longer needed as much medication to control the pain. When the meds are not used to manage pain, they can cause side-effects. There is a fine balance between medication and pain. If there is more medication than there is pain, that medication will cause side effects. If there is a balance between pain and meds, there will be minimal side effects. So while she was still on the same dose of medictaion, since her tumors had gotten smaller and therefore caused less pain, the excess meds caused these nasty side effects.
We are thankful for this bit of good news and pray for a good leveling out of her meds. We are hoping that she will be able to return home Friday or Saturday.
Today, she seemed to be perking up, even taking a trip to the cafeteria for a hamburger, fries and hagen daz! When we left at 6:00 this evening, she was sitting in the lounge having a conversation with family. Let's pray together that this continues in the right direction.
She and her family are grateful for all your prayers, support and offers of help.
Love, Lisa, Annette and family

"I know the Lord is always with me. I will not be shaken for he is right beside me." (Psalm 16:8)

Thank you... and an update.

First of all, thank you SO much for all your birthday wishes. I cried lots of tears reading my sister's post along with all of your responses - they meant a lot to me!! I did have a great day and ended it with dinner with my boys and our new nanny at a wonderful restaurant.

On a sadder note, we dealt with the first anniversary of my Mom's passing on October 31. I knew it would be sad, but I didn't expect it to hit me so hard again. Grief takes funny turns every now and then, doesn't it. Mom, I hope you know how much we all loved you and how much we miss you now!!

Now for an update and the reason for my leaving the blog empty for so long. I had an appointment last week with a radiation oncologist, on the advice of my chemotherapy oncologist. The purpose of the meeting was "just to meet him" so that he had a face to put with a name in case I ever need him. But, I've also been dealing with two issues that are related to tumors that are behind my chest wall - I've had trouble swallowing food and my voice has been changing and getting gravelly when I read to Kurtis. I mentioned these two issues to the doctor and he immediately said that he could fix those issues with just one big blast of radiation to those tumors. So, before we knew it, I was booked in for Friday for a radiation treatment as he just happened to have some space open.

Well, although the radiation went well at the beginning, it has taken it's toll on me since. I'm very very fatigued - those arms and and legs feel like they weigh 60 lbs each! And actually, that's probably what they do weigh as I'm dealing with some fluid retention in the legs and I have tree-trunks for legs right now.

I'm also very restless right now - pacing back and forth as I don't want want to sit. That's probably from the steroid they put me on when I had the radiation. BUT.. just received notice from the doctor to discontinue the steroid and to continue the diuretic (in order to reduce swellling in the legs). I am starting to feel better as well now....this post has been written over 3 days and now that we're into day 3, I can finally finish it.

My sister just left after coming over to visit and treat me to a "homemade" spa - mani, pedi and massage... wow - what a wonderful treat! Thank you Lisa!!

I'll try to update more later, but for now, let's finally POST this piece!! I obviously missed National Down Syndrome Awareness Week and the pieces I wanted to write about... c'est la vie. Hopefully I'll find time to do them later.

Peace and love,
Annette

National Down Syndrome Awareness Week and the Buddy Walk

November 1 - 7 is National Down Syndrome Awareness Week in Canada. Over the next week or so, I'll try to make a few posts about Down syndrome. For now, I'll let you know about the Buddy Walk that is happening in our area.


Here is a link to the information form. http://wrdss.ca/wrdss/docs/buddy_walk_2007.pdf


It also includes a pledge form - this is by no means necessary. Come out even if you don't have any pledges!

So, if you live in the SouthWestern Ontario area, and are looking for something fun to do on Sunday afternoon, come on out!!

Do I have an amazing sister or what?

Thank you Lisa for that wonderful post! I'm glad I gave you the "keys" to my blog - if you keep writing stuff like that, you can post all you want!! I think my ego went up just about 10 notches or so.... you're now going to have to work to keep me in line.

I love you Lisa - you're wonderful!

Happy Birthday to Our Dearest Annette!

A while back, Annette gave me, her sister, Lisa, the “keys” to her blog, in case I might ever need to use them. Well, today I’m feeling the need to break them out. Hopefully, she won’t regret too much that she gave me those keys.

Annette is having a birthday today- Friday, Novemeber 2.

Now anyone who knows me knows I am a big fan of celebrating the birthday. Weeks before, I am already letting my family know that my birthday’s coming up and how I want to celebrate. Presents are a welcome affair. I don’t get those people who don’t want anyone to know it’s their birthday. I want to shout it from the rooftop. Why? Because they’re fun. Because they’re reason to celebrate. Because it’s a great time to reflect. Because I love presents and cake.
Annette’s birthday gives us pause to do these things. To have fun, reflect and celebrate the gift of Annette.

Annette is not only my dearest (and only) sister and sibling. She is also my friend. She is someone I admire greatly. So many adjectives come to mind when I think of Annette. Here is the short list that pops into my head:
Warm
Caring
Genuine
Loving
Fun
Funny
Smart Witted
Intelligent
Hard Working
Classy
Loyal
Courageous
Brave
Faithful
......and just overall FABULOUS!

Annette has struggled over the years with many hurdles and “bumps” on the road. In fact, at times, I think she’s been broadsided by a transport truck more than once. Yet through it all, I have never heard Annette complain.
Never.
Ever.
Through physical and emotional pain. Through countless procedures and surgeries. Through nauseating (that’s an understatement if ever I heard one) and debilitating treatments. Through times of adjustment and learning. She is the bravest person I know and the person I admire most in this world. Her inner strength is amazing. Her perseverance is admirable. Despite it all, she still cares how others are doing. She genuinely feels badly if someone else is hurting. Amazing. I work towards having a fraction of her positive inner strength.

Many people have come to know Annette through her journey with cancer or Trisomy 21 (Down Syndrome). She is touching many lives. However, she does not let cancer define who she is. It is just like Annette to use this obstacle in her life and turn into a blessing and something that would glorify God.

Annette, on your **mrsdionf** (hand covering mouth) birthday, I wish you strength, peace and all the love you deserve. I love you.

So now I ask you all to come out of lurkdom and tell Annette that you love her too! Let’s make this the biggest blogging birthday party out there! Say hello, happy birthday, tell her what you love about her… your choice. Let’s show her how much she is loved!
Lisa
(the much younger sister – sorry, didn’t think you’d get through a birthday without that did you?)

Wow - our life changed a lot yesterday!

As of yesterday, we have a "live-in nanny"!!

It all happened so quickly.... I had been thinking for a while about finding someone to help out after school - preferably from say 2:00 to 8:00. This was so the person could do a little light housework, help out with homework and the kids and the dinner rush and then help out during the bedtime routine. So, yeah, where do find someone like that? Nowhere... that's where.

Backtrack a bit... Tom's parents were in Austria, visiting family and friends. They were visiting a friend who had a daughter who had been studying in Toronto (early childhood education, by the way) and not enjoying it at all. She wanted to quit that but still wanted to stay in Canada for the year. So she needed a job - where and what kind of job would she get? She didn't want to stay in Toronto and she did have some relatives elsewhere. Did Tom's parents' know of anyone who would hire her? No.. unfortunately they didn't.

Fast forward to the drive home from the airport where Tom and his parents connect and Tom mentions that we're looking for someone to help with the kids after school and hmm... it sounds like a good match, doesn't it? We need someone to help with kids at odd hours; she needs a job and a place to live.

And about 1.5 weeks later, we have a live-in nanny. At first Kurtis wasn't too thrilled about having her here as it meant giving up his bedroom. However, once he saw the bedroom he would be getting (the VERY unused exercise room), he seemed much happier. Ryan has fallen in love with her already.... at dinner the other day, he insisted that she sit beside him.

So, we're getting to know each other still, but so far so good. She is a lovely girl and I think it will work out OK.

Thank you Lord for answering this prayer so quickly and so perfectly!

As promised... some pictures

I'm having trouble with my photo editor so I can't upload pictures. Therefore, I am stealing pictures from my friends so you can see a bit of our weekend...

The walk

The whole gang back at Jan and Jeff's house. I stole this picture from Tara Marie's flickr site..hence the sepia tone.

The next few pictures are stolen from Kei.

Some of the gals.
Back row: Lisa, Nicole and Marley, Jan and Nash, Tara Marie

Front row: Beth, Stephanie, Annette, Kei with Stephanie's Katie, Rhonda with Tara's Emma Sage and Beth's Patrick is hanging with Seeger.

Kurtis and Kei's Sarah lead the Dash with Nash team:

Kei's William and Ryan shake hands:

Lisa's Jamie with a solemn Ryan and Emma Sage in the foreground:

Tara Marie and I:

I got my photo editing software to work...the last few pics are mine....believe it or not.

Me with Tara's Emma Sage and Nicole's Tarenne...the girls were being silly and just not cooperating with those smiles!

Kurtis on a watusi (don't know if that is spelled correctly, in any event, it was one cool animal! Ryan was too afraid to go on):

Ryan and Daddy on the walk... it was a long walk for a boy with little legs

Me with Ryan, and Dawn with Jack

Beth and I:

"Think of me first as a person"

(Again, shamlessly stolen from another blog, Emma Sage's - who I had the pleasure of seeing last weekend.)

THINK OF ME FIRST AS A PERSON

You look at me with pity,
concern or indifference,
for I am a retarded child.
But you only see the outside of me.
If I could express myself,
I would tell you what I am inside.

I am very much like you.
I feel pain and hunger.
I cannot ask politelyfor a glass of water,
but I knowthe parched dry feeling of thirst,
I itch when mosquitoes bite mea
nd run when I see a bee.
I feel cozy drinking cocoa in the kitchen
when a snowstorm blusters outside.

I had a heaviness insidew
hen I left my mother
to board the minibus for school.
My eyes darted back and forth,
seeking escape,but knowing there was none.
When my sister takes me to the
playground and children call me names,
she cries and takes me home.
Then I feel warm and dizzy,
and it is hard for me to breathe.
Mother's eyes are wet; she holds me
and tells me a story, and
I forget the children's jeers.
When I dress myself and Mother
pats my head, saying, "Good job,
Jim!" I feel...big. As big as Greg,
who goes to second grade.
I am a child -in age now, and in ability always.
I find the touch of soft toys
and snuggly dogs comforting.
I love the toys of childhood -a kite, a balloon, a wagon to pull.
I like to let go at the top of a slide
and after dizzy seconds find myself at
the bottom.
I like sleds on soft snow,
the wetness of rain on my forehead.

Though it is comfortable to be babied,
I am less dependent
when people treat me as a big boy.
I don't want their sympathy;
I want their respect for what I can do.
I am slow, and many things
you take for granted are hard for me.
I can hardly understand
what "tomorrow" means.
It took me months to learn
to pedal the tall blue tricycle,
but I was so proud when at last
both feet pedaled in the same
direction and the wheels went forward.
How happy I waswhen I turned on the right faucet
to get a drink of water.
I didn't want to ever turn it off.
If I can learn at my own pace and still
be accepted, I can fit into a world
where slowness is suspect.

Think of me first as a person,
who hurts and loves and feels joy.
And know I am a child to encourage
and direct.
Smile, and say hello
-even that is enough.

- Rita Dranginis

Wow - what a weekend

This past weekend, we travelled to Indiana to visit with my on-line friends from the Down syndrome community. These are the same friends we visited in late February. However, this time there were a lot more and I got to meet a few "new" people. I was so thrilled to meet Rhonda, Stephanie and her daughter Katie, Beth and her son Patrick and many others. I'll be posting some more pictures and writing more about it over the next few days, but here's a bit about what happened.

It was so amazing to connect again with people I've met before and soooo wonderful to meet people I've only known on-line for 6.5 years. It's really hard to explain to people outside of this type of environment, but it's not like meeting someone for the first time. You've shared the ups and downs, challenges and achievements of raising a child with Down syndrome. You've shared incredible highs and cried tears with them. So, this weekend was a real treat for me and I feel so rejuvenated now. I was worried about the long drive and how I would feel, but I think I was blessed with energy and feeling good throughout the whole weekend (drive back included).

The weekend included the Indiana Buddy Walk on Saturday, a get-together on Saturday afternoon/evening with the whole internet gang (and it was a large gang - wait until you see the picture tomorrow) that included a bounce'around (the best toy in the world according to my boys) and a hayride with a visit to a farm that had some very interesting animals! So, for now, here are 2 pictures (it was taking a LONG time for me to find, edit and save the other pictures, so like I mentioned before, that'll have to wait until tomorow).

Ryan just can't resist a dog

Ryan, Nicole and William