Saturday, July 29, 2006

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.

Wednesday, July 26, 2006


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.

Sunday, July 23, 2006

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:

Monday, July 17, 2006

"A Very Special Wedding"

I love happy stories like this!,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, 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

Friday, July 14, 2006

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).

Saturday, July 08, 2006

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.

Sunday, July 02, 2006

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 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.