Wednesday, August 30, 2006

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: 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.

Friday, August 25, 2006

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.

Tuesday, August 22, 2006

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.

Sunday, August 20, 2006

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!

Wednesday, August 16, 2006

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 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. 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.

Friday, August 11, 2006

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.....

Thursday, August 10, 2006

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

Friday, August 04, 2006

More prayer'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.

Wednesday, August 02, 2006

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!