Surfacing...

I do feel like I've been under for the past 9 days. Here's an update of what's happened:

THE STEELERS TRIP
Julie and I had a great trip to see the Pittsburgh Steelers DEFEAT the Saints. Wow, what an experience that was. The tailgate parties, the gear and the sheer number of people there was amazing. I felt underdressed.... I swear at least 95% of the people at the game had Steeler gear on... and all I had was my yellow towel and a ballcap. I felt the urge to go buy a jersey!

And on a funnier note...what do you get when you put two people who are directionally challenged in a car in a strange city? Pulled over by the cops - that's what! Who knew that "Buses Only" really meant buses only??? In our defense, Pittsburgh has some of the most detailed rules of the road I've ever seen..."no right turn on red on M-F 4:30 - 6:30", "no right turn on red Sundays 9:00 - 12:00", "no right turn on red when the moon is full and it's the third thursday of the month". Thankfully the cop had pity on us confused girls and let us go with a warning.


We returned home late Monday afternoon. The next morning Tom and I headed off to Toronto for my oncology appointment.

THE CHEMO PLUNGE
I didn't know if I would be receiving chemo or not as this appointment was to review the results of my recent CT scan. The CT scan was identical to the previous one. In this case, this was good news. Although I had said in previous posts that the CT scans showed no change, in each case there was a very slight amount of cancer growth. In this case, there was none - and that IS good news. It also meant I can undergo two more rounds of chemo (at which point we'll test again).

So I had chemo on Tuesday afternoon. My doctor gave me a new medication to try to help with the nausea and vomiting I experience. It is a powerful anti-anxiety drug and it knocked me out. I essentially slept from Tuesday afternoon until Monday morning. And I guess sleeping is better than being sick, but I don't know that it really did much in the nausea department as I still wasn't able to eat much during that week.

This chemo is the hardest I've ever been through - or maybe it's just that after 10 treatments over the past 9 months, I'm not able to recover as quickly as before. I've lost a lot of weight due to this chemo and that does worry me a bit. The one thing I've always been good at is maintaining my weight (mostly too well... but when you're going through chemo, maintaining weight is a GOOD thing) and now I'm not able to do that as much. And when I do feel like eating, it's not the healthy food I want... I want nachos and cheese, ice cream, cheese sandwiches, Thai food.... when I should be drinking my homemade vegetable juices, eating my kale soup and broccoli and carrots. I've got to work on increasing my nutrition (and as I'm writing this, I'm drinking a glass of lemonade and cooking a beef croquette for lunch).

GRIEF
I'm finding that grief is a funny creature. I expected to feel more upset at my Mom's visitation and funeral... but I wasn't. I expected to be crying more often... but I'm not. I did NOT expect to break down and start crying walking down the ramp when exiting the Steelers game... but I did. I was walking down the ramp, in the middle of thousands of people after witnessing a wonderful win by the home team. It popped in my mind that I'll have to call my Mom when I get home and tell her all about it as she would love to hear about my weekend... where we shopped, what we ate, what the game was like. And then it hit me that I couldn't call her and I started crying. I did not expect to think of her in the middle of doing some dishes and have it hit me.... but it does. Grief is not happening like I thought it would. And that's something I'm going to have to work through.




So... now it's Wednesday and I'm starting to feel functional again. Sorry for leaving y'all in the lurch for over a week. I'm really touched by the concern I received - people who worried about me when I didn't post for so long. Please, keep saying prayers for me and my family.

A Funny

Kurtis and I were watching a children's show that was talking about bees and hives and how honey is made. He turns to me and says... "so basically, honey is bee barf." YUM! I'm still chuckling over that comment.

I'm surfacing... and am working on keeping y'all updated. I should have another post tonight.

ROAD TRIP!

I'm off for the weekend... I'm so excited!

My very very good friend, Julie, and I are off to Pittsburgh to see the Steelers play. Julie is the Steelers fan, not me, but she invited me along to see the game. Even though I don't watch football, I am REALLY looking forward to going to the game and seeing an NFL game live!

We're stopping in at a huge outlet mall on the way down. I hear the deals are great so I'll probably be a bit of a spendy girl again.

So... if you're watching the game on Sunday, look for me! I'll be the one in the Steelers hat! ;)

Inspirational Story - Dick and Rick Hoyt

Most of the people who read my blog through the "T21 community" will have already seen this - so you can skip this post. But others might like to see this.

I've reprinted the article here but I couldn't figure out how to get the video over here... so please click on the link, page down and click on the video. The song is actually one of my favourites too.
http://cjcphoto.com/can/

[From Sports Illustrated, By Rick Reilly]
I try to be a good father. Give my kids mulligans. Work nights to pay For their text messaging. Take them to swimsuit shoots.
But compared with Dick Hoyt, I suck.
Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he's not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars--all in the same day.
Dick's also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike. Makes Taking your son bowling look a little lame, right?
And what has Rick done for his father? Not much--except save his life.This love story began in Winchester , Mass. , 43 years ago, when Rick Was strangled by the umbilical cord during birth, leaving him Brain-damaged and unable to control his limbs.
"He'll be a vegetable the rest of his life;'' Dick says doctors told him And his wife, Judy, when Rick was nine months old. ``Put him in an Institution.''
But the Hoyts weren't buying it. They noticed the way Rick's eyes Followed them around the room. When Rick was 11 they took him to the Engineering department at Tufts University and asked if there was Anything to help the boy communicate. ``No way,'' Dick says he was told. ``There's nothing going on in his brain.''
"Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a Lot was going on in his brain. Rigged up with a computer that allowed Him to control the cursor by touching a switch with the side of his Head, Rick was finally able to communicate. First words? ``Go Bruins!'' And after a high school classmate was paralyzed in an accident and the School organized a charity run for him, Rick pecked out, ``Dad, I want To do that.''
Yeah, right. How was Dick, a self-described ``porker'' who never ran More than a mile at a time, going to push his son five miles? Still, he Tried. ``Then it was me who was handicapped,'' Dick says. ``I was sore For two weeks.''
That day changed Rick's life. ``Dad,'' he typed, ``when we were running, It felt like I wasn't disabled anymore!''
And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly Shape that he and Rick were ready to try the 1979 Boston Marathon.
``No way,'' Dick was told by a race official. The Hoyts weren't quite a Single runner, and they weren't quite a wheelchair competitor. For a few Years Dick and Rick just joined the massive field and ran anyway, then They found a way to get into the race Officially: In 1983 they ran another marathon so fast they made the Qualifying time for Boston the following year.
Then somebody said, ``Hey, Dick, why not a triathlon?''
How's a guy who never learned to swim and hadn't ridden a bike since he Was six going to haul his 110-pound kid through a triathlon? Still, Dick Tried.
Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii . It must be a buzzkill to be a 25-year-old stud Getting passed by an old guy towing a grown man in a dinghy, don't you Think?
Hey, Dick, why not see how you'd do on your own? ``No way,'' he says. Dick does it purely for ``the awesome feeling'' he gets seeing Rick with A cantaloupe smile as they run, swim and ride together.
This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best Time? Two hours, 40 minutes in 1992--only 35 minutes off the world Record, which, in case you don't keep track of these things, happens to Be held by a guy who was not pushing another man in a wheelchair at the Time.
``No question about it,'' Rick types. ``My dad is the Father of the Century.''
And Dick got something else out of all this too. Two years ago he had a Mild heart attack during a race. Doctors found that one of his arteries Was 95% clogged. ``If you hadn't been in such great shape,'' One doctor told him, ``you probably would've died 15 years ago.'' So, in a way, Dick and Rick saved each other's life.
Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass. , always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.
That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.
``The thing I'd most like,'' Rick types, ``is that my dad sit in the chair and I push him once.''

The new "do"

Here's a picture taken on Saturday of me with the new hairdo. I stopped wearing head coverings around mid-October as my hair came back enough for me to feel comfortable going "au natural". My hair came back more gray than I anticipated. I knew I was grey, I just had no idea I was THAT gray! I've been colouring, high-lighting and low-lighting my hair for so long now, I really didn't know what my natural colour was. So, it turns out the new shade is "salt and pepper"!


This picture was taken on the occassion of my 40th birthday party. My birthday was actually last Thursday. Despite the upheaval and sadness of last week, we decided to hold the party anyways - and I'm so glad we did. I had a wonderful time.... I should as it was all MY friends there!















Here are some other pictures of the big event:

Lisa, my Dad and me:














Ryan with one of the many balloons:



















Kurtis with most of the balloons. The decorating committee (aka my mother-in-law, my brother-in-law and his girlfriend) went a bit balloon crazy, but the boys sure loved it!

Laid to rest: Winnie (1940 - 2006)

My Mom's funeral was held today.

What an odd couple of days. Incredible sadness intermixed with love and laughter. I remember when I was young and attended a funeral, I was struck by how the adults were laughing at the lunch held after the interment. I couldn't believe how they could laugh after we just buried somebody! Weren't we supposed to be sad and crying??? We just were crying 1/2 an hour ago - how could they be laughing now? Now that I'm older, of course, I understand how joy and sadness can occur. We've spent some time over the past few days remembering my Mom - telling stories, remembering things we've done together, laughing at quirks she had and things that happened in the past - and it's been so wonderful to laugh. Even last night at the funeral home, we joked that now Mom and her lifelong friend Jennie are up in heaven having a coffee together.

And once again, I was struck how funerals are not for the dead, they're for the living. It was a chance to share tears with good friends of my Mom, to cry with her siblings and her in-laws. Everybody that knew and loved my Mom needs a chance to say good-bye. I'll never understand families that hold "private" ceremonies for immediate family only. To me, that's just not fair. It totally minimizes all the other relationships that the deceased had. Yes, my Mom was most dearly loved by her husband, her daughters, her sons-in-law and her grandchildren. But she was loved by so many others - her dear lifelong friends, her siblings, her in-laws, new friends. And, even if someone didn't "love" her as we would understand it, her life affected many many other people - people she used to work with, people she attended Coffee Break at church with.. etc etc etc etc. I think that all these people need to have a way to say "goodbye". I found it so uplifting to see and chat with all those people who loved my Mom. Though it was heartbreaking to say good-bye, it was so wonderful to share our mutual love of her.

So, now, I'm emotionally drained and physically tired. It's been a long 4 days...it's actually unbelievable that it's only been 4 days since she passed away.

Lisa and I wrote a small "eulogy" for her funeral:

Mom was born the youngest of four children in the Netherlands during the war. She often spoke fondly of her childhood days growing up on the farm, and as a family we enjoyed hearing her stories and seeing her birthplace on a family trip to Holland. As kids we got a kick out of the fact that the barn, with all the animals was attached right to their house! The cutout bed in the wall was quite fascinating too. The family stayed in Holland until 1951, when Mom was 11, and they immigrated to Canada. The family first settled in Cochrane, Ontario. We loved to hear how the family lived in the school house and used the packing crates to enhance their house. In later years, the family moved to Caledonia. In her late teens, Winnie met the man who would be her future husband and on September 29, 1961, Gordon and Winnie were married in St. Catharines.

Early married life was spent working hard at their jobs to establish a new home life for themselves. Mom and Dad enjoyed weekends with friends and family. Their favourite pastimes were bowling, cards with friends and visiting family. Summertime was spent in their boat at the beach with friends waterskiing and boating. Mom and Dad also enjoyed summer holidays at the cottage with family and friends.

After 5 years of marriage, they were blessed with a daughter, Annette. Four and a half year later, Lisa came to join the family. Mom always told us how happy she was to have her two girls.

Growing up with Mom was often a lot of fun. Our favourite memories are of family vacations and traveling to many various locations. Our first major road trip was out east. We learned so much about our country and history through our various vacations and Mom and Dad instilled a love for travel in us both!

Mom loved to be with her friends and family and have a good time. Before she had her heart attack 3 years ago, she loved to walk. Almost every day included a 30 minute walk to Tim Horton’s for a coffee and another 30 minute walk home. Biking was another love of hers. Bike rides up to Lock 3 with Dad were her favourite. A bike ride to Virgil for breakfast was also a fun thing to do. Mom also always had the most beautiful and abundant garden on the block. We marveled at her green thumb and her ability to cultivate teeny tiny flowers into great big bushes of blooms. Her indoor plants were also her pride. She loved to laugh at a good joke, savor a glass of wine with her friends or her girls, enjoyed lunches or dinners out, and when her grandchildren came along, she loved to spend time with them and spoil them. Before her heart attack, Mom did a lot of babysitting and developed at wonderful relationship with each of her grandchildren. Mom was a caring and compassionate woman and was always there to help someone when needed.

We are forever grateful for the strong moral Christian values that Mom demonstrated and taught us through her example. We’ll miss her laughter, having “girls” lunches, phone calls and so much more.

In Loving Memory

My mom passed away last night, peacefully, in her sleep at the age of 66.

It seems so surreal at this point. So unbelievable, yet it's there and it's all I can think about. And the next few days will be filled with a multitude of tasks and details to attend to.

Mom, you will be so greatly missed. We all loved you dearly and there will be a huge void in our lives.

I have so much to say, but I don't know what to put down... or how to say it. So for now, this is what it is.

Update on my Mom and me..

Apparently this round of chemo wasn't as easy as I thought. Sunday was rough again with a lot of nausea, vomiting and fatigue. Today the nausea is better but I am still extremely fatigued.

Tom is driving me to my parents' house today (as I don't trust myself to drive with this level of fatigue). Palliative care has been brought in to help take care of my Mom. She had two OK days when she came home from the hospital but hasn't been well since. It's important for me to be home at this time and be with my Mom, Dad and my sister. Please keep us all in your prayers.

Sunday Grains of Gratitude

1. I'm grateful that this round of chemo wasn't as hard as the last one. I'm feeling pretty good (9 out of 10 on the chemo scale) - what a relief! I just need to get a bit more strength back as I'm still feeling fatigued.

2. I'm grateful for the food people have brought us. We won't go hungry and I don't have to cook!

3. I'm grateful for the extracurricular activities my children can participate in. I'm thankful for the multitude of different opportunities that are available to them. On Saturdays, Kurtis is playing basketball and Ryan is participating in a music therapy class - and they both enjoy it!

4. I'm grateful for the laughter of my kids this morning as we all piled into one bed and giggled over silly things. There's really nothing like the laughter of little kids!

That old squeaky wheel...

I gave my letter to the doctor yesterday. I ended up seeing a different doctor (they work closely and my doctor was right there... they just were very busy) and gave the letter to her. But, we ended up talking about the events and what happened. She was VERY apologetic and said that never should have happened. She then gave me a number where I could have her paged directly if I wasn't getting a good response from the team. She then obviously gave the letter to the head nurse as she came and apologized to me as well. THEN... the letter made the rounds with the oncology nurses and they apologized as well (although it would have been a bit more tactful to wait until I was out of the room before distributing the letter!! LOL). The nurse who treated me also gave me her direct phone number so that I could call her if I was feeling terrible or had some questions. THEN... this morning I received a call from the head nurse checking in to see how I was feeling. I have a feeling I'll be getting great "service" now!! And I'm glad I received the response I did... at least I feel they "heard" what I was saying.

On another note...
hopefully my Mom will be coming home from the hospital today. She is getting quite anxious to come home, and I don't blame her. She's getting frustrated with laying in a hospital bed (you know they don't buy Sealy mattresses there) and the noise that generally occurs. We're thrilled she's able to come home so soon.

Now, I'm off for my afternoon nap. This chemo business makes one tired!

quick peek in

I haven't had time to write or even check email this past week as it's been another tough week but here's a quick update...

My mother has been in the hospital since last Monday evening. She was quite sick but is recovering slowly. For those of you who pray, can you please pray for my Mom.... pray for her physical strength to return but also pray for peace and comfort. Mom, I love you so much!!

I go in for chemo again tomorrow. Wow - it's been a fast 3.5 weeks! I've prepared a letter addressing my concerns and feelings that I will give to my doctor... can't wait to see his response! And I'm hoping this one goes easier! I'll be more aggressive with drinking as my cousin (who's a nurse) suggested I may have been dehydrated (which makes nausea worse). yum... gatorade!

And my baby boy lost his first tooth! I didn't even know it was loose and I don't know where it is. I just noticed a gap while we were in the grocery store this afternoon. I'm pretty sure the tooth was there this morning....Ryan isn't too interested in the fact that it's gone and hasn't expressed any interest in talking about the Tooth Fairy. Also, money doesn't mean anything to him, so what should the Tooth Fairy bring? Kurtis got $5 for his first tooth (the Tooth Fairy gets cheap on 2nd and more teeth). Perhaps she'll bring a Dora The Explorer book...

Isn't that picture up above amazing? I can't believe all those finches were there at once.

About Ryan

I've been writing a lot about Kurtis lately, so, as promised, here's something about Ryan. It's not a story but some information about Ryan. Ryan hasn't been "tagged" (something done in the blogging world) but I saw it on another blog and thought I'd use it.

3 things that scare me: Andrea Bocelli and Elmo singing one particular song on Sesame Street; sometimes loud sounds but not much else

3 people that make me laugh: my brother, my mom and my dad

3 things I love: Only 3??? But there's so much! music, swimming, dipping sauces, Sesame Street, horsing around with Kurtis

3 things I dislike: getting my nails cut, being asked to do anything I don't want to do, doing some of the homework Mommy makes me do

3 things I don't understand: why my parents don't think it's funny when I run away in stores; why I can't put ketchup on everything; why my parents won't let me get up and roam around when I'm awake...they keep insisting 5:30 am isn't wake up time yet and I have to sleep some more in their bed

3 things on the floor: 3 Halloween costumes I'm considering; about 10 books; the blankets off my bed (it's easier to jump on the bed when the blankets are off)

3 things I'm doing right now: eating breakfast (honey on bread with a glass of milk), watching Garfield the movie (yes, my Mommy is letting me eat breakfast while watching a movie at 7:30 in the morning!!) and teasing my brother (soooo much fun... he's so easy to bug!)

3 things I can't do: roller blade or ice skate - I really really want to because Kurtis does, but I haven't learned yet; play outside by myself; use a knife

3 things that best describe my personality: very friendly, very happy and a joker

3 things you should listen to: a dog barking (it means there's a dog somewhere close and you NEED to go pet it); me (I don't talk a lot but I sure have a lot to tell you); music

3 of my favourite foods: bologna; apples with creamy cucumber dressing as a dip; ketchup rice chips

3 things I'd like to learn: anything Kurtis is doing; ride a bike; use a knife

3 of my favourite drinks: juice, pop and chocolate milk

3 shows I watch on occasion: Sesame Street, Dora the Explorer and Spongebob Squarepants

Finally...making it back here...

bad bad blogger.... not keeping everyone updated...

Anyways, here's the scoop:

My last "chemo" post was on a Tuesday. I actually didn't start feeling better until the Saturday after that post. So in all, it was a 9 day haul. Thursday and Friday were good... I don't really recall Saturday and Sunday as I slept through them... and Monday through Friday were tough. I dealt with nausea and occassional vomiting the whole week. I was fatigued beyond belief too. Then on Saturday, I was better.... energy still low but MUCH MUCH better and I was no longer nauseaous. I've been feeling much better since then as well. My appetite is returning and my energy is back to its normal low levels.

I am quite ticked off with my "support" team at this new hospital. I called them 3 times when I was sick - I have been through 4 types of chemo but had never felt this bad for so long so I needed to know if this was normal or if I should get some blood work done (ie for transfusions or injections to increase cell counts). They returned my calls the first two times but the information I got was less than helpful and a bit patronizing and I never actually spoke to my doctor or his nurse. They didn't even return my call the 3rd time.

When I went to get my bloodwork done this past Tuesday, the assistant made some comment about me "calling a lot". I told her that I was feeling VERY very bad. She then commented along the lines of: "well... sometimes you just need to just bear down and get through it"... I told her it was easy for her to say! ooohh I was mad.... exactly how many chemo treatments has she gone through? I then told her I was nervous because I thought I might be getting one of the nasty side effects... she replied that "oh.. that would take much longer to happen and it wouldn't happen like that"... and I would know this how?? I don't have a medical degree! Would it have hurt them to address that concern of mine with some compassion?

The nurse taking my blood was much more sympathetic and said I definitely need to tell my doctor how bad this chemo was. I lost 10 lbs (although I've now gained 5 of that back - it was probably mostly due to fluid loss) and a week of my life. This may be par for the course for this chemo for me, but in no way did they prepare me for this... or reassure me as I was going through it. I am so disappointed with their lack of compassion and understanding - especially this assistant.

I'm going to put the facts and my thoughts on what happened on paper and give it to my doctor. This way I can deal with it unemotionally and calmly.... and he can understand what happened. I realize they are busy.... I realize they probably get inundated with phone calls from people complaining about every little thing... but that doesn't mean they still can't reply with compassion and reassurance. It's tough enough going through chemo and dealing with side effects that are scary... we don't need to be patronized or ignored as well.

Grains of Gratitude

This is a post I started on Sunday (hence the date) but never finished until today (Friday, Oct 13).

My friend, Christy, has a Sunday "Grains of Gratitude" post. I won't be doing this every week, but I thought I'd do it for Thanksgiving. So, here are some of the things I'm thankful for. (And yes, I'm incredibly thankful for my family and friends, but because that's so obvious and something that permeates every hour of my every day, I'm not going to include that in my list).

1. I'm thankful for Fall. Autumn is my favourite season of the year. I love the smell in the air. I love the crisp, cool air in the mornings. I love the crunch of leaves as you walk through them. I love putting on a sweater for the first time. I love fall colours - rich greens, golds, reds and oranges. I'm thankful for all the seasons, actually. Each one brings its own unique attributes and each is beautiful in its own way. And I'm thankful that we get to experience all 4 seasons where we live. But fall is the best.

2. Right now, I'm thankful I have some extra padding on this body of mine. This is something I never thought I'd be thankful for! I lost another 5 lbs this round of chemo. I don't want to lose weight and am working on that,,, but I'm thankful that these 5 lbs are not a big deal right now.

3. I'm thankful for the gifts Down syndrome has brought our lives. This really is a whole other post, but in short, Ryan having Down syndrome has brought me some wonderful friendships, it has taught me a lot about what is really important in raising a child, it has brought me a closer relationship with God, and most important, it has taught me about TRUE unconditional love.

4. Believe it or not, there are gifts I have received as a result of this horrible cancer. I am thankful for the openness it has brought to my relationships with my friends and family. I've never been one to tell people "I love you" (other than my parents, Tom and my kids), but it's easier now. It's easier to tell people how important they are to me and how much I think of them. And for that I'm thankful - as these people deserve to be told that! I am also thankful for the love and support I have received. It is a wonderful gift to feel connected to loving, caring people.

A quick update...

I'm still recovering from this chemo... it has knocked me flat. The first two days (Thursday and Friday) were fine. In fact, I even went out on Friday night to a pub for a short while as the "old gang" was meeting a friend who was visiting from Austria.

Then Saturday hit... I slept almost all of Saturday and Sunday. I thought I knew fatigue - but this was overwhelming exhaustion. I managed to make it out of bed on Monday for a while but still slept most of the day. Today is a bit better, but I still have virtually no energy and have mild nausea. I talked to my oncologist's office and they say it isn't uncommon and it seems (of course) that it is hitting me harder than most people. I have managed to eat a bit yesterday and today ... I know I should eat as I won't regain energy without nutrition, but it's so hard when you're nauseaous and don't have an appetite.

I continue to covet your prayers... especially during this rough one. Thanks.

How I love that boy of mine!

I seem to be talking a lot about Kurtis lately. Don't worry - more about Ryan will definitely follow!

Today is the Terry Fox Run at Kurtis's school (well, it's actually a short walk but it's the thought that counts). Instead of asking people for pledges, the children are asked to bring in a loonie or a toonie ($1 coin or $2 coin for those of you outside Canada). So I dug out my wallet last night to get each of my boys a toonie. Kurtis told me "No, I want to use my own money". I told him he didn't have to pay out of his own allowance, I would give him the money. But no, he insisted and after debating back and forth for a short while, I let him take the money out of his allowance. He reached in and grabbed $3..... He said he wanted to give a lot of money so they can do a lot of cancer research. I couldn't help but start crying...and told my little man how proud of him I was.

45 Years!!

HAPPY 45th WEDDING ANNIVERSARY to my Mom and Dad!

Today is the day they were married, 45 years ago. We celebrated their anniversary last weekend with them but I didn't want to forget them on this very special day.

We are so thankful that you can celebrate 45 years of marriage. Through the good times and bad, you have always been there for each other. You have been an amazing model for me to follow and to aspire to.

We love you very very much Mom and Dad! Have a wonderful day!

My chemo holiday ends today

I start my new treatment protocol tomorrow morning. This chemo is on a 3 week cycle as well. It's administered over 24 hours, but the good news is that I don't have to stay in the hospital. Instead, they hook me up to a pump and I can go home almost immediately. Home Care will come on Friday to disconnect me. This chemo has fairly minimal side effects - they're pretty much the same as the last chemo and again, I'm happy because apparently the nausea is pretty minimal with this one. I do have to go to Toronto to get this chemo - thank goodness for supportive friends and family!

Please keep me in you prayers tomorrow. I'm a bit anxious about this. It's been a while since I've had chemo. My hair is growing back (although there is a very good chance I won't lose what little I have) and my energy is returning. I'm dreading the low energy, the low blood counts (and watching for infections and being wary of crowds) and the general feeling of "yuckiness" that you get when you go through chemo.

A great article about my friend Nicole and her daughter, Tarenne

I met Nicole on-line when Ryan was born and have had the pleasure of meeting her twice in real life. Tarenne is an adorable little girl and they did a great article about them! Check it out...

What a great big brother!

Sometimes I really wonder about my kids - especially when my 7-year old is going through major attitude and my 5 year-old thinks listening to his parents (or any other authority figure) is optional. But then...every now and then your children say or do something that makes you realize all that teaching is paying off!

Last week, Kurtis couldn't sleep so he came to snuggle in bed with me. I was watching CSI or something else totally inappropriate for a 7 year old and quickly switched the channel. It turned out to be Supernanny. For some reason, this show got his attention and he wanted to watch it (and I admit, I watch it in between commercials of my other show as well). The children in this particular episode were horrible. Hitting, yelling, swearing.... Kurtis couldn't believe it and he made a comment something along the lines of .."we're not nearly that bad, are we?" I told him that Ryan and him were good kids - kids who just misbehaved sometimes. We talked for a bit about those kids and behaviour... I was amazed at his comments and how we were having a chat about this! Then I said something about how Ryan has been misbehaving a lot lately and how he has been hitting and not listening to what is asked of him. Kurtis's response blew me away: "but Mom, Ryan has Down syndrome... and that means it takes him longer to learn. So maybe it's just taking him longer to learn good behaviour". Not only is he defending his younger brother to me, he's also realizing why Ryan sometimes behaves the way he does. He's a very insightful boy, that kid of mine.

Summer 2006

Here are some other pictures from this past summer.

RibFest - our family tradition
















Our visit to the ROM (Royal Ontario Museum)














Kurtis being a Knight at the ROM
















Kurtis's Rabbit Catcher. Our neighbours received 2 rabbits from their grandparents - unfortunately, they kept escaping from their hatch. The kids spent hours and hours catching (and re-catching) these bunnies. We did have an actual trap, but Kurtis had fun devising this one. His creativity never fails to amaze me.
















Kathy and the boys




















Ryan learned to swing all on his own this summer:















Pouty boy















I let Ryan eat his grilled cheese in front of the TV one day. Well, he decided he didn't have enough ketchup (he NEVER has enough ketchup) and went and got himself some more. Where was I in all of this?? Posting on my blog! :)
















Tom and the boys

What's on my mind today

Nothing really... no new insights on the human condition... nothing new on the quantum physics front... In fact, it's something everybody already knows! What's on my mind today is music.

I've done a lot of driving over the past few days and have been enjoying listening to the music on my iPod. And it struck me how amazing music is. It makes us laugh and cry. It can teach and inspire. Music can be bubblegum fluff songs that have a good beat and just make you happy. It can bring you to tears over the tragedy the story tells. Music can make us want to dance. It can make us want to praise God. It creates memories like no other vehicle, in my humble opinion. Art and poetry just doesn't do it for me like music does. This is what really got me thinking.

My thinking started last week when I received a package in the mail. It was from a dear old friend from high school. She had sent me a CD of Modern English which had the song "I Melt with You" on it. My friend and I have recently reconnected and I told her how, over the years, every time I heard that song on the radio, I thought of her. And in particular, I was reminded of our Grade 12 trip to Quebec City. So I was very pleasantly surprised when I received this CD - it brought back so many memories.

So as I've been putting the miles on my car, I started thinking of all the songs that bring back memories for me. I thought I'd share just a few of the oddball memories that popped into my head:

- driving to and from my co-op job one hot summer in my 1978 (?) Pontiac Sunbird... I listened to Bruce Cockburn and Elvis Costello there and back... and over and over again. I can't hear either one of them without being transported back to that road and that car.

- Terence Trent D'Arby (remember this guy?) - I bought a tape (what I realize now was a pirated version) at a market stall in Turkey when I travelled through Europe. I also am reminded of various places throughout Europe when I listen to Eurythmics and Sting. Who needs pictures of the Notre Dame when you have music to bring pictures to your mind?

- I travelled through the Rockies when visiting my cousin in Alberta. I couldn't get any radio stations and the car I rented didn't have a CD player. So I bought one tape (Eric Clapton - Unplugged) and I listened to it probably 100 times. I can't hear a single song on that album without picturing the beautiful mountains in front of me... with gorgeous clear blue lakes beside me.

- The Statler Brothers (see my list below). My parents played the Statler Brothers a lot and the album on my list is one of theirs. It's not available on CD or vinyl anymore (I've checked). I grew up listening to this album and I still love it. Their version of "How Great Thou Art" will forever be the version to compare to. And I still listen to this regularly and am immediately brought back to sitting in front of the 3 foot high speakers in my parents living room, singing along with them.

I think that's why many people love listening to the songs that they listened to when they were teenagers. So much teenage angst and emotion... so much fun with friends....so many memories being created.... All those songs (horrible as they may be - I was a teenager throughout the 80's so enough said) bring back memories from that time.

Since my children have been born, I haven't listened to "my" music nearly enough. We listen to Raffi, Barney (ugh), Sharon Lois & Bram and Laurie Berkner to name a few. But I hope to create good childhood memories for my children with music. I hope they remember listening to Raffi as we drove down to African Lion Safari (I do!). I hope they remember dancing in the dining room with Mom as we listened to our Signing Time CDs. I hope they remember falling asleep to Sunday School Songs on their tape player.

Finally, here's a list of my favourite albums. These are in no particular order. And they are not necessarily my favourite artists. These are albums I can listen to over and over again and not skip a single song on the album.

1. Tapestry by Carole King
2. Famous Blue Raincoat by Jennifer Warnes
3. Graceland by Paul Simon
4. Self titled album by the Indigo Girls
5. How Great Thou Art by the Statler Brothers

There's a song by ABBA that says it well, although it is a bit corny. (Just as an aside, ABBA is my all-time favourite band, and yes, Tom still loves me despite this little quirk). In their song "Thank you for the music" they say,

...."And I've often wondered, how did it all start. Who found that nothing can capture a heart like a melody can? Well, whoever it was, I'm a fan".

Our game plan

We saw "the sarcoma expert" at Mount Sinai in Toronto this past week. He's not yet convinced that we need to stop the chemotherapy I was just on. Of course he didn't receive copies of my CT scans so he doesn't know for sure (as he's just going by what the doctor wrote when she asked him to see me). I'm getting the CT scans to him on Monday so he can figure out if Plan B is still a viable option for me. If that isn't possible, then we do have a Plan C - a clinical trial drug. This isn't a totally new, experimental trial. There are no placebos - everybody who is in the trial receives the drug. They've already figured out dosages and schedules for administration. The side effects are similar to most chemotherapies and the good news (for me) is that nausea is again minimal.

The one thing I can't do while on this drug is take the i.v. vitamin C therapy. It's going to be an either-or situation. I'm very disappointed in this, but I do understand why. There are some concerns that the vitamin C may interfere with the chemo. AND,,, if we do see some successes, they wouldn't know what to attribute them to - vitamin C or chemo? Right now our decision is to stick with conventional chemotherapy.

That's all for now! I'm feeling more energetic than I have in weeks and I'm off tonight to enjoy some lobster at Lobsterfest!

First Day of School

Such mixed emotions today... happy because the kids are going back (yes, I will miss them, but it's good to get back to structured days).... worried as I didn't know who their teachers were or who Ryan's aide was. I was prepared to stay with Ryan for the morning because I couldn't see dropping my child off with a teacher or aide who didn't know Ryan. The odds were that I would at least know who the aide is because there's only a few at Ryan's school and they all know him - but if it was someone who had never worked with Ryan before, I wanted to stay there to help Ryan through the morning. And the teacher was brand new to the school as she is just filling in for mat leave for the regular teacher (who we LOVE and who told me two years ago when Kurtis was in her class that she couldn't wait to teach Ryan). BUT, in the end, Ryan has the same aide as last year! We're thrilled about that! His aide is a bit overprotective of Ryan - and we'll continue to work on that - but she is AMAZING with developing his reading and fine motor skills. So, overall, it was an easy morning for Ryan.

Kurtis found his class with a little bit of help too. He's happy with his teacher and he has some of his old friends back in his class. There's 1.5 classes in his grade so there is always one split class and they switch them around regularly so he's getting to know everyone in that grade.

Here are my boys on their first day of school. Ryan had a bit of a fall yesterday and scraped the whole side of his face and neck - poor kid!

An apology from Q92

This one seems more heartfelt. I still don't think "Igor" gets it - and he probably never will.

Contact: Don Peterson, III
General Manager: WZKL/WDPN Radio
Station Apologizes for Radio Bit
ALLIANCE, STARK COUNTY, OHIO - September 1, 2006. Q92 Radio in the Canton, OH radio market has formally apologized for a contest “bit” called “Name that Tune with Mongoloid Mike”. The bit had a character voice lyrics to a popular song as if sung by a person of special needs. Listeners were invited to call in to “Name that Tune”.
“I apologize for the behavior of my on-air staff. The ‘bit’ that occurred was wrong and I am VERY sorry. It is reprehensible and will never happen again. My sincerest apology to ARC of Stark and all ARC affiliates worldwide. I would also like to apologize to the employees of the Stark MRDD, friends and associates. Also, to anyone directly or indirectly associated with anyone with a disability,” said Don Peterson, III, General Manager of the station.
Peterson continued, “We (Q92) aired an apology beginning at 7p Wednesday (8/30) evening that ran every hour and all day on Thursday. An apology appears on our web site www.q92radio.com and the DJ that aired the bit has been suspended and his pay scale has been adjusted accordingly.”
“Igor (the DJ airing the bit) is a very talented and valued employee, but this segment crossed the line. He is young and his future is bright. I know Igor has learned a very valuable lesson and obviously the segment will no longer be aired by the station,” said John Stewart, Program Director for the station.
“Plans have been put in place to partner with the Stark MRDD to better educate our listeners of the gifts people with disabilities have and how they contribute to our society. I am looking forward to that opportunity and on behalf of the station and our staff, I am sorry for any harm that came out of our broadcast facility,” Peterson concluded.

Ugh... "Mongoloid Mike" - this is unbelievable

A radio station outside Canton, Ohio (Q92.5 FM) is doing a regular contest called, "Mongoloid Mike". The DJ has an individual sing a song as if he has mental retardation and then asks listeners to guess what the "Mongoloid" is singing. If you guess the correct song, you win a prize! Apparently this has been airing for some time now, but only recently has the "developmental delay community" been made aware of it. In the past week, some people have written/emailed/called the station itself but the station didn't seem to care. In fact, the DJs thought that some of the calls and mail were funny. ARC of Ohio also reports that when they responded to the station with a complaint, the DJ told listeners to call the ARC and interrupt their business because they are a bunch of "nut cases".

However, as more and more people complained, and went to their sponsors and complained, the station took notice. The good news: after a blitz by concerned parents and organizations, the radio station indicated it will be taking the segment off the air and will be issuing an on-air apology today. However, if the on-air apology is anything like the on-line apology, I'm not too hopeful. In any event, this nasty piece is off the air.

The on-line apology can be found at: http://www.q92radio.com/ This apology just has a very hollow feel to it... it almost seems like one of those apologies that start "I'm sorry if you feel that way"... it's no apology at all! "We'd like to apologize for any harm done" - no apology for "we did the wrong thing" or "we were insensitive jerks".... "It has been pointed out to us that this is not the proper forum" - ummm... so what IS the proper forum? I'd like to know exactly where is the right place to go to hear jokes like this.

I am so horrified that this kind of stuff still happens - but not really surprised. Jokes about people who are mentally retarded still happen regularly. Just watch the Comedy Network for a short while and eventually you'll see someone making fun of the intellectually challenged. This was just so blatant though.... so obviously designed to make fun of people with developmental disabilities. What concerns me is that the people at the station, particularly the DJ, don't see what's wrong with this. People would "get it" right away if it was a racial slur... call in and pretend to be of African descent.. we could call it "N**ger Name That Tune". But they don't see it the same. And that is very sad.

20/20 Segment on Carrie and Sujeet's wedding

http://abcnews.go.com/2020/Video/Video/videoPlaylist?id=2358933&start=bW9tZTIza2puY0BhZGVscGhpYS5uZXQ=&end=Zm9yZXZlcg==

This couple is truly inspirational. I'm also very impressed with 20/20 - they did a great job on this segment.

The light is returning

I'm feeling a bit better today - emotionally and physically. I've had some time to process this news and deal with it. I think one of the hardest things is waiting for the next steps. Not having a game plan in place when we heard the news made it worse as there didn't seem to be anywhere to go. But, we WILL have something in place. There are other options.

I have also been incredibly encouraged by the support of people who've emailed, posted on my blog, called, dropped off a book or cookies (I have a wonderful cookie fairy who delivers fairly regularly). Your support means the world to me. Even if you don't know what to say, and honestly, I totally understand how hard it is, just the fact that you're thinking and praying for me lifts me up.

I also met with my Pastor and his wife yesterday and was greatly encouraged by their wisdom and honesty.

Please continue to pray for healing, wisdom for the doctors as we map out a game plan, for strength for Tom and me, and for the gift of being able to find enjoyment in every day.

I wasn't sure how to title this post... so I left it blank. How to summarize in two words how I'm feeling right now? Just can't do it.

We found out the results of the CT scan I had done last week, and again, they weren't good. The tumors have not shrunk at all. Nada... nothing. And the cough I developed last week isn't due to a cold or asthma, it's because of fluid building up in my lung again.

So Plan B is done too. My doctors here are going to contact the expert again at Mount Sinai to figure out next steps. Right now, I don't know what that will be... perhaps another type of chemo or perhaps participation in a clinical trial (new chemos). My regular oncologist was on holidays so we had a different one and she's not a sarcoma expert and hadn't checked with the Mount Sinai doc before. Hopefully she'll be able to contact him this week so we can figure out what we do next.

On a more positive note, the tumors haven't grown. This may be due to the chemo keeping them in check or it may be because the tumors are incredibly slow growing. We don't right now which one it is.. but I guess we'll find out once we stop chemo for a bit. I pray it's the second actually as that gives us more time to find something that will work.

Since it seems that conventional medicine is failing me right now, I'm looking towards unconventional options. I'll be starting intravenous vitamin C therapy in the next week or so with a naturopathic doctor in Toronto. The Canadian Medical Association Journal published an article recently about some successes with i.v vitamin C. Of course, there is no guarantee - but then there was no guarantee with chemo either. And the good thing is that there is no down side - no negative side effects. Even if it doesn't reduce the tumors, the benefits of increased energy and a decrease in pain will make it worthwhile for me.

It's been a very very tough couple of days. When I decided to do this blog, I promised myself that I would be honest. That isn't to say that I would hang everything out there - it is the internet after all and not everyone needs to know ALL the details. But I said that I would be honest with what I'm going through and generally, what I'm feeling. So... here it is...this is the toughest thing I've ever been through. I'm feeling hopeless and scared stiff. Take it one day at a time as my sister reminded me. Right now that's all I can do. I wish I had some fitting Bible passage or a quote from a book or devotion that expressed everything I'm feeling right now. I've never been good at recalling quotes from any source (I can't even tell jokes properly :) ) I know I've read many inspirational things over the past 8 months, but right now I'm drawing a total blank. The only thing that comes to mind is the well known Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." No matter what the future holds, I know that God is with me and is holding me close.

Back to real life

We had a good remainder of the week. The weather was warm and the kids had a blast boating, swimming and playing.

Have I written about my sister lately? :) She is one amazing woman and I am SO lucky to have her as my sister and friend. She was so helpful during the week...helping to get things for me, watching over Ryan, including Mom and Dad in their meals. Lisa, I hope you got a chance to rest on Sunday! You really are the best!!

Tom was no slouch either - he was quite busy this week with the kids (although he did also manage to get 2 rounds of golf in) and kept Ryan busy in the swing and in the water. Tom, thanks for all you did to help the kids have a great week.

I didn't do a lot this week... fed some kids, read a few books, made a few meals (but thanks to my mother-in-law and Lisa, most of them were already pre-prepared), played in the water a bit and slept a lot. I was quite tired this week and had a good nap every afternoon. Ryan was quite tired too - I'm sure all the activity wore him out, so we were both quite happy to have that afternoon nap.

We were so happy, also, that Mom was able to come this week too. She is feeling better since she started on a strict new diet and was taken off another medication. And her dialysis is on hold right now because the diet has improved her bloodwork - thank goodness for small miracles.

I ended up having to go to the emergency department of the local hospital on Wednesday night. I had developed a fever and it hit the magic number for the required 1 hour so I had to go in. I had also developed a slight cough and that worried me. Thankfully after checking my bloodwork, I was able to go home with a prescription for "the big gun" oral antibiotics and an asthma inhaler. This was much better than the other alternative - getting the "super big gun" antibiotic by i.v. and having to come back every 8 hours for it! The fever never returned but I am using the inhaler regularly. I think I just started to catch a cold and my usually mild asthma that I get when i get a cold was a bit more aggressive this time.

Here are some pictures from our week:

Kurtis playing with the tether ball game I had purchased. It was a hit with all the kids at the cottage

Me, Ryan and my nephew Connor going for a boat ride.

Kurtis and Sara on the boat.

Kurtis learning to kayak

Kurtis, Sara and Ryan hamming it up

Ryan looovves the sand!

Cottage Life

Well, first of all, according to Tom, I need to stop calling it a cottage... it's a cabin. I guess it is more of a cabin then a cottage, depending on your definition. The picture on the left was taken with my new cell phone (cool, huh?).

We rent a cottage..oops cabin.. for one week a year. My sister and her family rent one too and my parents come up with their camper. It's a great location for kids... a nice lake, a large sandy area to play in, ping pong table, swings, shuffle board, horseshoes and a volleyball court. The reason the adults love it so much is because the kids keep themselves busy from morning to night.

The past few days have been rainy and cold...today is chilly, but at least it's not rainy! Tom and my brother-in-law took the kids on a candy tour yesterday to kill some time.... out for lunch in one town, have an ice cream in another town and finally a stop at The Candy Store in another town. Needless to say, the kids were a bit wired last night! In the meantime, my mom, my sister and I enjoyed a nice lunch out.

We rented a small fishing boat today so the kids are happy going out for boat rides today. They haven't caught many fish yet, but that doesn't seem to bother them. The sun finally seems to be peeking out so hopefully we'll all be able to go swimming this afternoon.

oh..by the way... I never did buy that speaker set for my iPod. I did look on-line, but they were a bit pricey for me.

Spendy girl

I know EXACTLY what I'm doing....but does that stop me?? I have had the biggest urge lately to SHOP... to buy things. I don't know exactly what I want, but I want something. It's superficial, materialistic and only lasts a short while, but for that short while, it makes me happy. Yup, I am compensating for this cancer crap. I feel bad for the kids that I can't do much with them so I buy them stuff. Today I bought them a video (well, I think it's probably more for me... The Princess Bride is one of my favourite movies of all time and I want to share it with them). Yesterday I bought them a tether ball type game to bring to the cottage. The day before I bought them an educational game. Ryan had a gift certificate for the toy store and I bought Fun Thinkers for him and Kurtis enjoyed it so much, I went back and got the correct age level book for him. I buy them food I would never otherwise let them have. Kurtis got a pair of Crocs that he really doesn't need.

As for me? I've been feeling a little bit down the past two weeks. I know most of it is because I am exhausted and when my body is exhausted, my emotional state isn't always the best. I needed to get a new phone yesterday as a little boy, who found the phone sitting beside the sink, thought it needed a wash along with the dishes. Instead of buying the cheapest phone in the store, which I would normally do as I don't use my cell phone very much at all, I instead bought a slightly upgraded version... it's pink and has a camera! Today I bought an adaptor for the car so I can use my iPod in the car. I bought myself some new sunglasses. I've bought myself two paperback books in the past week. I bought myself a pair of Crocs as well... as if I need another pair of summer shoes. For someone who says she's exhausted, I seem to be doing a good job of getting out shopping, don't I? I'm just a very quick shopper.

Intellectually I know exactly what I'm doing and I know this isn't good for the long term. But I gotta admit,,, it's a bit fun to spend money on some toys! They're not huge purchases I know... they're not going to break the bank, but it's something I'm very conscious of as I don't like to buy stuff "just because". In the meantime, the kids are loving it! :)

And maybe I'll just go out and get a speaker set to go with the iPod so we can have some music up at the cottage.....

If you give a child...

I love this so much, when I saw it in the "DS circles", I had to post it right away on my blog. The boys and I are HUGE fans of Laura Joffe Numeroff's series of books (for example, "If you give a mouse a Cookie") and this writing follows in that vein. It also speaks very eloquently for those of us who often have to fight the educational system and their expectations (or more often than not, their lack of expectations). I'm quite fortunate that we've had wonderful educators in Ryan's life so far, but I know a lot of other people who have been told blatantly and subtly that their kids just "can't do that".


If You Give a Child An Appropriate Education - by Lori Miller Fox

If you give a child an appropriate education, he's going to ask for opportunities.
When you give him the opportunities, he'll probably ask you for support.
When he works very hard, he'll ask for recognition. Then he'll want to look at his accomplishments and make sure he isn'tdreaming.
When he looks at his accomplishments, he might notice he doesn't have many friends. So he'll probably ask for a group to fit in with.
When he's finished getting comfortable, he'll want some friends to help him have fun. He'll start playing. He might get carried away and play with every child in his class. He may even end up making a playdate! When he's done, he'll probably smile. You'll have to get him back to his school workwith coaxing and encouragement.
He'll refocus, concentrate on school work and smile a few more times. He'll probably ask you to challenge him more.
So you'll rewrite the goals on his IEP, and he'll ask to do more and more. When he does more and more, he'll get so excited he'll want to do harder things. He'll ask for you to believe in him. He'll try his best. When he's done, he'll surprise you with accomplishments.
Then he'll want to know he has approval. Which means he'll need acceptance.
He'll look for acceptance in your eyes and stand back to find it. Seeing your acceptance will remind him that he's the same as everybody else.
So...he'll ask for opportunities. And chances are if he aks for opportunities, he's going to need further education to make the most of them.

Posted by LoriFox on November 28, 2005 at 07:00 AM

More prayer requests...it's been a tough week.

My heart is heavy right now with so much illness and stress, so I ask your prayers and positive thoughts for healing, for comfort, for peace and for hope.

1. My Mom found out this past week that she is going to need dialysis on a regular basis. Although it is manageable, it is another thing to deal with. Mom, please know I keep you in my heart and my prayers daily. I love you! We can handle this together and we'll all do whatever we can to help.

2. Our good friend "G" had a stroke this past week. We are thankful that it has "just" affected one side of her body and that she is fine cognitively. We pray that she will be able to return to full health soon and that she can return home to her family. She has young children as well so we pray that the kids will be OK as they deal with their Mom being in hospital for at least another week.

3. I had chemo again yesterday and am feeling pretty good, all things considered... just tired. Last week really wiped me out but I think I was fighting an infection. I saw my nutritionist today and I'm upping one of my supplements to deal with the mild anemia I'm experiencing.

4. Kurtis has been sick on and off since Tuesday. This is my healthy boy who very, very rarely gets sick. If he's still running a fever tomorrow, I'll have to get Tom to take him to the walk-in clinic. It's tough on both of us as I want to comfort Kurtis, but I have to be very careful as I can't risk getting sick. So no kisses, no close snuggling - just hugs. He understands, but when you're little and sick, you just want your Mommy, don't you?

5. A good on-line friend, "S", had her Mom lose her battle to cancer. S, you know I keep your family in our prayers. Although your Mom is released from her pain, it leaves a huge hole in your life and we pray for comfort for you.

Down Syndrome Advocacy

This topic for this post is stolen from Nicole.

Brian Skotko is an amazing young man. He has a sibling with Down syndrome, is a highly educated doctor, is the co-author of one of my favourite picture books, and is doing some interesting research into the more social aspects of families who have a child with Down syndrome (including how doctors inform parents of the diagnosis and effect on siblings).

I agree with Nicole that the world would be a better place if everyone had a close friend or relative with Down syndrome. And Brian is a shining example of how wonderfully his sister has affected his life.

"Disorder Doesn't Mean Doomed" is a great article and shares some of Brian's views. Please visit his web site by clicking his name above and read that article too to get a real picture of Down syndrome

Some cheese with that whine?

One of the things that really bugs me about going through chemo is that I never know how I'm going to feel. It makes planning a social life difficult. It seems like all I can do lately is promise "well, it depends on how I'm feeling" when we try to make arrangements to get together with others. This last chemo really knocked the stuffing out of me again - I was absolutely, totally fatigued for 2 days. I had planned to go out to dinner with two friends on Sunday night, but I had to tell them I might not be able to make it. Thank goodness for flexible friends (and their families) so that when I called Sunday afternoon and said that yes, I could do it, they could make it too.

The other side of this is, that when I AM feeling good and energetic, I want to go with that flow and I end up probably overdoing it. On Monday, I was feeling good again. So Kathy and I took the kids to KidsZone to play (KidsZone is one of those indoor playgrounds with slides, climbers, and lots of games like skeeball and whack-a-mole). But by Monday night, I was so tired again - too much, too soon.

It's a balancing act... one I'm going to have to continue to work on. And thank you to all our friends who understand. I hope we'll be able to get together soon!

Various Pictures

Our Atlanta Trip:
The gang from our T21 on-line bulletin board:
Back row: Annette, Jan, Nicole, Karen, Carol (with Maren on lap), Lisa (holding Jamie in blue and Corie in pink)
Front Row: Kris, Brig (Karen), Archie & Jonah (Carol), Jennifer (Kris)






The kids playing ring-around-the-rosie:
















Annette, Carol & Maren, Kris & Jennifer:




















Kurtis wanted to wash the van the other day... so I let them have some fun. Unfortunately for the car, their cleaning skills are entirely appropriate for young children. I went for a car wash the next day.






































Ryan showing off his flexibility.



















While out running errands and cleaning up with Dad, Kurtis found these larges pieces of cardboard and decided to paint a large picture on it. It kept him busy for a couple of days. I like activities like that!





















Ryan showing off his soccer skills. We put Ryan in Timbits soccer this year as he has expressed a real interest in playing soccer. He loves to kick the ball around the house so we thought soccer would be a great activity for him. He doesn't mind the skills activities but now isn't quite sure about playing the game. He runs and runs after the ball, but doesn't get it too often. With 8 other children chasing the ball in a pack, it's hard to have sole control of it.

Connections

I believe that certain people are brought into our lives for a reason. Some people are for lifetime friendships.... others for short-term friendships that serve a need at a certain time....some are just acquaintances that serve other needs.... and some are serendipitous meetings that make you go "wow". These "wow" meetings are the ones that I find very interesting - either there is something for you to learn or receive or something for you to teach or give and sometimes both.

I had one of those "wow" meetings recently. There is a woman at the cancer clinic who has the same schedule as me. We have our preliminary bloodwork and meetings with the doctor on the same day at the same time. We then have our chemo the next day on the same schedule (although she's just every 3 weeks). 3 weeks ago we ended up in the library together between bloodwork and doctor's appointments (there's usually about 1.5 hours in between). We started chatting last week and seemed to hit it off quite well. Then we met again the next day getting our chemo and we chatted some more. This is where it gets interesting...

"M" turns out to be from Dutch background and attends the same denominational church as me, although in a different city. For some reason, I felt compelled to show her pictures of my children (I don't usually show strangers pictures of my kids until I know them a bit better). When she saw that Ryan has Down syndrome, she shared with me that she works with Friendship Ministries in our church. Friendship Ministries is a program designed to include people with developmental disabilities in the church.

I met M again today while at the Clinic. Although I guess it's not surprising, it is interesting how having cancer strips away all the superficialty of conversations. Somehow talking about the weather and the latest tabloid romance (not that I really talk about that, but you get the drift) is less important. We were able to have an amazing talk today about some serious issues. M has found out in the past 2 weeks that her prognosis is not good. We talked about facing death, anger at the situation, worry about our kids, our faith in God - BIG topics. I learned a lot from her and I hope we can continue to share throughout our journeys.

Please remember M in your prayers as well. Although her children are older, they are not yet adults and it is a very tough situation for all.

And as an aside, my bloodcounts were borderline today, but they should go up again tomorrow so I'm OK for chemo.

I'm back!

and you didn't even know I was gone. :) Just a quick update for now. I'll post more in the next day or two.

I just got back from Atlanta, GA. Tom and I went down for the National Down Syndrome Congress Conference and what a wonderful time we had!

Jan, a good on-line friend of mine that I've known since Ryan was born (her son, Nash, is 10 days older than Ryan) BEGGED me to come to the conference. (ok ok... she suggested it a few times and bent my rubber arm). And since it worked out with my chemo schedule, and we got a cheap flight, and we really needed to get away .... we went! What a wonderful time Tom and I had. It was so amazing to meet Jan and Nicole again. I've known both of them on-line since Ryan was born and have had the pleasure of meeting them before. Nicole was actually one of the very first people who responded to my post on the Down syndrome board on the internet. She is one of the warmest and most compassionate people I've ever met. Jan and I have shared 5 years of watching our sons grow up - we've shared therapy tips, commiserated over behaviour issues, discussed schooling issues - pretty much everything! I also got a chance to meet other on-line friends that I've never met before: Kris, Carol, Lisa and Karen. They are also incredible women who I've been blessed to know through my 5 year journey with Ryan. Carol was actually a keynote speaker at the conference - and I'll write about what she discussed at a later date. It is so amazing to meet someone that you've spoken on the phone with, emailed with, and shared the joys and challenges of raising a child with Down syndrome with. It's hard to describe to people sometimes - they can't believe that I'd fly so far to meet someone I've met on-line and know only that way. But it's really like meeting an old friend that you haven't seen in a while. I'll hopefully be able to share some pictures of my friends in the next couple of days. My camera died so I didn't get any good pictures.

One of the highlights of the conference was attending a session with Carrie and Sujeet - the couple I just posted about who got married. They shared stories about their lives, their courtship and their wedding. Their mothers spoke about how happy they are that their children found someone to share their lives with. They also spoke about the supports they've put in place to help Carrie and Sujeet live as independently as possible. What an inspiration!


And from a more personal point of view, it was wonderful to take a break. Just getting away was like a much needed vacation. I find that I need those mini-breaks - they do wonders at revitalizing me. And I really needed that at this time!

Tom and I at the banquet:

"A Very Special Wedding"

I love happy stories like this!



http://www.time.com/time/magazine/article/0,9171,1214946,00.html

It's a perfect morning for a wedding in tiny Dolgeville, N.Y. A soft breeze tames the July sun; birds do tremolos from above the clapboard cottages of a village so quaint it holds an annual Violet Festival. Beneath the narrow spire and wooden beams of the United Lutheran Presbyterian Parish, Carolyn Bergeron, 29, and Sujeet Desai, 25, are about to take their vows. "There is news today," says the Rev. James Paulson. "Love," he says, can't be stopped by cultural differences or different faiths. "Love can't be stopped by Down syndrome."

Carrie and Suj, as they're known, beam through much of the ceremony--their second, having already celebrated a Hindu ritual the week before--but the rest of the 140 people present, Pastor Paulson included, are fighting back tears. In the congregation, wearing expressions of awe and envy, are half a dozen friends from the National Down Syndrome Congress, which holds an annual meeting for adults with DS. Bergeron and Desai met at one of those sessions two years ago. ("I told my mom I wanted to date her," Desai recalls. "I was shy. I couldn't say anything, so Mom helped.") Both bride and groom are high achievers, advocates and role models within the DS community. She has given many inspirational speeches (often comparing herself to an oddly shaped tomato in her dad's garden--"different but just as juicy"). He performs on the piano, the clarinet and four other instruments. Both have led workshops in which they demonstrate black-belt mastery of martial arts (hers in karate, his in Taekwondo).

This generation of young adults with DS has shattered old ideas about what is possible for people who carry an extra 21st chromosome in their cells--the cause of DS--and what opportunities society owes them. They came of age in an era of early-intervention programs to spur physical and mental development--Desai began one at 7 weeks. Once in school, they were included in regular classrooms when possible and were offered tutoring and special classes when needed. Both bride and groom are high school graduates. Just as critical, this generation has benefited from medical care addressing the heart and gastrointestinal defects, eye problems, thyroid issues, obesity and other health woes that, for reasons that are poorly understood, often tag along with mental retardation as part of Down syndrome. The result: their average expected life span has doubled, from 25 in 1983 to 56 today. And as adults, they have had the Americans with Disabilities Act ensuring them a right to be accommodated in the workplace where possible.

While inclusion is the watchword for today's disabled Americans, social isolation remains a painful problem. "Once they leave high school, they can fall off the earth because of a lack of services," says Dennis McGuire, director of psychosocial services at the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. "If they're stuck at home, they can end up feeling very much alone."

Carrie's mother Peggy became concerned about her daughter's social and romantic needs as Carrie entered adulthood. "When the loneliness began to loom around 21 and she saw her sister and brother having relationships and getting married, she longed for it," says Peggy. Group discussions at a nearby resource center for people with disabilities brought "some comfort," she says, but Carrie continued to talk about meeting her "Mr. Right." Says Peggy: "We never dreamed it would happen."

Sujeet's mother Sindoor, however, says she "had marriage in sight straightaway" once Sujeet expressed interest in Carrie. "We come from a different culture," she explains. As India-born Hindus, Sindoor and Sharad Desai, both dentists, "don't expect dating and breaking [up]." Nor did Sindoor wish to expose her vulnerable son to the emotional upheavals of serial entanglements.

With help from their families, who live about 90 minutes apart in upstate New York, the couple began dating. At a Valentine's Day party, "I had my eyes on her all the time," Sujeet recalls. Later that night, "I started to kiss her. She loved it!" The two began speaking by phone daily. Says Peggy: "They can talk about things"--like what they plan to eat for lunch that day--"that we'd get bored with." Finally, with plenty of plotting by both families, Sujeet popped the question onstage after he played a concert for people with disabilities, a moment that can be viewed on his website, Sujeet.com Says Carrie, who has exemplary verbal skills: "There are not many words to express how much I really love him. He's beyond words."

While love was blooming, the two families worked hard to create a system that might support an eventual marriage. There were few role models to follow. Many older adults with DS live in residential facilities that do not accommodate married couples. Another reason such marriages are rare--no one knows exactly how many there are--is that marital status can affect the amount of support that adults with disabilities receive from federal aid programs administered by the states. "People who might otherwise be interested in marriage don't want to risk losing their benefits," says Dr. William Schwab of Madison, Wis., who has worked as a consultant on sexuality issues for the National Down Syndrome Society.

Luckily for Carrie and Suj, New York State offers an innovative pilot program that allows individuals with developmental disabilities to design their own support plan, subject to state approval. The endlessly devoted Desais and Bergerons pressed for a plan that would allow the newlyweds to live together in their own apartment, located midway between the two family homes, and receive part-time aid with tasks like cooking. "They don't need baby sitting every hour," explains Sindoor. "What they need is money management and transportation" to part-time jobs, volunteer work, exercise classes and other activities. The "self-determination" program requires enormous initiative and hard work from the young couple, as well as those in their circle of support, but it allows them to take considerable responsibility for their own lives. "We want them to become as independent as they could be," says Sindoor, "so when we are not around, they can manage."

The most delicate questions arising from a marriage like this one concern sexuality and parenthood. Women and especially men with Down syndrome have low rates of fertility, but pregnancy is possible. Carrie reluctantly ruled it out, even before she met Suj, when her mother told her, correctly, that she would have a high risk of bearing a child with DS. "I just burst into tears," she recalls, "and then I said I would not have any children." A tubal ligation ensured the decision. But she says she and her new husband have other dreams to sustain them: "To continue with our speeches, to continue to make a difference in this world for people with special needs, to have some fun time too. And to take care of each other."

For more photos of the couple's Hindu wedding ceremony, go to time.com

Miscellaneous update

I feel like I'm not being a good blogger lately, so here's a short update on what's been happening at our house!

I had chemo yesterday. Counts were good enough for chemo which I was happy about. But they now actually went the other way and are too high... if it's not one thing, it's the other! Counts that are too high usually means you've got an infection of some type - but I don't. I've been ordered (yup - ordered by the nurse) to take my temperature twice a day just to ensure I'm OK.

Tom's still dealing with sciatica although it doesn't seem to be quite as bad. It seems that it'll take a few weeks for it to ease up and that only time will help.

Tom and I went out for a wonderful dinner on Wednesday night - without kids. I wanted to go out before chemo as this chemo really affects my taste buds and everything is quite tasteless for about 10 days. We enjoyed a really nice dinner while the kids watched the "talent" show (America's Got Talent??) at Oma and Opas's house. This is Kurtis's new favourite show. I've never watched it but I might have to check it out next time it's on.

The boys were both at camp this week. Ryan was in Kiddie Camp for the mornings only. Kathy was unable to go on Tuesday with Ryan, so I stayed in her place. It was quite interesting to spend 3 hours with Ryan in a structured setting and observe him. I've stayed for a little while to observe at school, but never for this length of time. I was amazed at how well he participated, how he listened, followed directions etc etc. There were some times when he did act out (ie run away, grab a toy from a child, not listen to the counsellor etc), but overall, I was quite impessed with my little man. He is so cute when he goes home... he finds EACH AND EVERY counsellor, and gives them a hug and kiss goodbye. He searches until he finds every one of them. Kathy and Ryan have been busy in the afternoon - going to the park, to the library, for a swim at the YMCA. Since Kathy doesn't drive, she's been taking the boys on the bus a lot which is great for them both. They are also walking a lot more than they ever do with me - which is also great for them, but especially for Ryan as it helps build up his endurance. BTW, have I told you already how great Kathy is? LOL

Kurtis was at Golf and Tennis Camp. Unfortunately, it poured buckets of rain on Monday and Wednesday so he didn't get a lot of golf or tennis in on those days. But he still had a great time. There are 3 other neighbourhood kids in the class too, so he's having fun with his friends learning the correct hold on a golf club, practicing his putting, and perfecting his tennis swing!

Kurtis also lost one of his top front teeth on Wednesday. My little science guy decided to try an experiment with the Tooth Fairy. He put his tooth in a small Tupperware container and placed it beside his bed instead of under his pillow. He wanted to see if the Tooth Fairy would know that he lost his tooth since it was in a container and not under the pillow. Well, apparently the Tooth Fairy needs the tooth to be under the pillow as she didn't make a visit that night. Kurtis woke me up very early in the morning by bouncing on my bed and declaring "Mom, I know the answer to my experiment. The Tooth Fairy DIDN'T COME!" So last night, he put the tooth directly under the pillow with 11 cents as well (why the 11 cents? This was another experiment... it was a tip for the Tooth Fairy and he wanted to see if she'd take it). So anyways, the Tooth Fairy visited last night and left $2.00 (and the 11 cents).

Lots of prayer requests

I have some prayer requests for my family.

1. My Mom has been struggling with her health for a few years now due to a heart attack. She's had a few more issues with her heart recently. Her doctor has put her on some medication to help but it will take about 2 weeks before it will do anything. Please pray that this medication will help her. Pray for strength and comfort and that she will continue to feel God's unfailing love.

2. Tom has sciatica and is in a lot of pain. Pray that this will resolve quickly and that Tom will be back to health soon! It's tough on the kids as now they have two parents who aren't able to fully give themselves energy wise. We took them to Italian Festival last night (a very fun tradition for us) and we had to laugh at our family as we hobbled along... I was moving slowly because of the chemo I just had, Tom was moving slowly and awkwardly because of his back and Ryan was way overtired and cranky because of the busy day he had had.

3. My blood counts were borderline for this last round of chemo on Thursday. They were too low on Wednesday but I was re-tested on Thursday and they were good enough to get the chemo that day as scheduled. Pray that my counts continue to be acceptable so that I can receive the chemotherapy as scheduled. I go back in again next Thursday so I really need the counts to be up again. I'm going to be extremely good with my diet and supplements this week in the hopes that it will help.

Media and Down syndrome

A wonderful on-line friend of mine has a little boy with DS the same age as Ryan. Recently, Nash's picture was taken, with a few other children with DS, at a waterpark (apparently the cover shot was purchased by the local DS association at a fundraiser and the Executive Director worked with the magazine on the cover). She was thrilled - media coverage including children with T21 on a "regular" magazine just showing them engaged in "regular" activities. This isn't something you see everyday. Imagine her shock and dismay when she finds out the cover was used for a special maternity issue of Indy's Child that discusses the issue of prenatal testing for Down syndrome and other "defects". The article itself is fairly neutral (except for..to be discussed later) about testing. It lists exactly what each test does and how accurate it is. Except for...the last line of the article is the kicker: "I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That's reassuring." Fortunate... unlike the parents of the beautiful children on the cover? What the heck is that about? There was nothing in the article about information for people who do find out prenatally that their child has DS. Nothing to help provide accuate information instead of the usual fear, doom and gloom that is generally provided to the uninformed people who receive a postive diagnosis.

I'm not going to get into the issue of prenatal testing on this post. I'll save that rant for another time. (But just as a teaser... did you know that about 80 - 90% of people who find out prenatally that their child has DS will abort? And most of them will have never actually spoken to a parent of a child with DS to find out what it's really like). What I want to vent about is the media.

I've had enough experience through Tom and his work to know that the media always seems to have an angle. I'm becoming very cynical about what I read in the paper as I know quotes and stories are manipulated to achieve certain goals. Just as an example, we have a local paper in our town that doesn't like the current Mayor. It's interesting to see how they very rarely now photograph her in Mayoral activities or give press to the positive things she is doing. In our own dealings with the press for our Buddy Walk, my friend Susan and I are always extremely clear with the reporter to avoid terms like "suffering from" or "afflicted with" DS. We emphasize people-first language (ie a child with DS) instead of terms like "down syndrome child" or "a downs". But even then, the poor old child attitude comes through, along with outdated stereotypes and facts that are sometimes just plain wrong. That's why I want to continue to advocate on behalf of people with DS. So that we DON'T need to continue to educate everytime we do an interview. So that old stereotypes and misdated information aren't taken as facts. So that people with DS are presented first and foremost as people... doing regular old people things. And that's why I continue to celebrate reporters, magazines and newspapers that DO report well. I hope to post some more good news stories as I come across them in the future.

Now back to this magazine...I'm baffled as to the thoughts of the editor in this case. Could it honestly just be a coincidence that this magazine chose to do this? It could be possible although I have a hard time believing that no one at the magazine recognized that they had a cover of children with DS on an issue discussing prenatal testing. Looking on the bright side... do they think that by putting a picture of beautiful kids who happen to have DS on the cover, they somehow negate what's written inside? Are they trying to show the positives? I'm not sure and not very hopeful that that's the case. I honestly cannot fathom what was going through this man's mind when he did this. In any event, I know Jan, her husband and the parents of the other children feel used, betrayed and lied to. I know that there have been letters to the editor already written and am looking forward to seeing the outcome of this. I hope that the editor will apologize and realize what he's done.