Here's a letter I wrote...

From: Laurie Wood [mailto:ljwood@shaw.ca]
Sent: Mon 2/5/2007 3:27 PM
To: Rollason,Kevin
Subject: Re: Your story in the Winnipeg Sun today

Dear Mr. Rollason:

Today is our son's birthday. He has Down Syndrome and he's 17 years old.
We have a daughter with Down Syndrome who is 14 and a half years old as
well. We wouldn't trade them in for anything in the world. You are
right, this genetic testing is a very slippery slope. The Canadian
Charter of Rights and Freedoms is supposed to protect everyone in our
country - including the disabled. It is a shame on our country that we
can sit by and allow this genetic testing creep into our medical system.
Most people will be terrified with the news that they may be/are
carrying a Down Syndrome baby. Most doctors paint a bleak picture out of
their own ignorance.

Our own family doctor in Ontario had never had Down Syndrome patients
before - he had to buy some books when our son was born so he could
learn about these babies in order to care for our son, but our doctor is
far from the norm. Thank you for pointing out in your article that
overlap of intelligence between high-functioning Down's children, and
the "lower intelligence" of so-called normal children. Our son attends
high school, can read and write, and works at an afternoon Co-op at our
city's Art History Museum, where he's learning to operate the cash, show
people around the exhibits, take care of the exhibits, and take care of
the gift shop. Our daughter attends the same high school, takes the same
academics, is in the cosmetology course, and works in the school
cafeteria. They've enjoyed Special Olympics for three years and have the
gold medals to prove it. They can beat their peers in bowling, love
playing Playstation (my son can beat my husband sometimes), computer
games, and going to dances.

Did they deserve to be aborted? Certainly not. Will they live productive
lives in the community, most likely employed in some lower-end job such
as stock clerk, or grocery check-out person? A veterinary assistant? A
deli clerk filling salad containers? More than likely!

Should people think twice about their OWN rights and freedoms under the
Charter being eroded by geneticists infringing on them? I believe so. If
we let them test us for "Down Syndrome", what will become essential
next? Will testing become mandatory at the beginning of every woman's
pregnancy? What will your information be used for? Who will have access
to it - for ongoing genetic research? It's a slippery slope not only for
the *disabled* but for the able-bodied who may someday soon find
themselves losing their right to privacy and having to have tests that
aren't necessary and may do more harm than good.

I have a girlfriend who was tested "routinely" and told her baby girl
had Downs Syndrome. Because they were Catholic, they didn't abort. Their
baby girl was perfectly normal and healthy. Their pregnancy was
agonizing, because some doctors taking part in a genetic project had to
have their jollies.

People must stand up and take issue with the fact that a) the so-called
"disabled" are part of our diverse society and therefore are as
protected under the Charter as everyone else, and b) they must protect
their own rights and freedoms under the Charter, and not be bullied into
"routine testing" that is a euphemism for "research" for geneticists
that have a hobby horse for another purpose.

And as you so eloquently put it, sir, we are all just a car crash, a
blood clot, or an illness away from becoming disabled ourselves.
Something for all of us to ponder - there but for the grace of God go I.

Sincerely,

Laurie Wood

P.S. to PRAYER REQUESTS...

I found out today that Milena's CT scan was perfectly normal - so sign of cerebellum atrophy or anything abnormal at all. So we're very thankful! The school may arrange for some developmental testing before the year ends so we can pass it on to Winnipeg.

We saw Churchill High School and took pics of it for the children's reference. It backs on to the Assiniboine river, so I'm hoping Milena doesn't get too adventurous and wander about. There didn't seem to be any fencing of the property at all. It's a nice small high school though, and they'll receive the same Lifeskills Program that they've had here. The only bad news is that it's way across "town" and their bus ride will be long. I'm picturing those dreadful days of having to get Nathan on a 7:20 a.m. bus!

Nathan's neurologist appointment is Monday April 2nd re his possible epilepsy. Please keep us in your prayers on that day as well!

A HOLIDAY IN WINNIPEG!

We just got back from a long weekend at Kevin & Becky's, and can report that Becky and the "little one" are doing well. Milena had to have her hand pried off poor Becky's stomach more than once, as she thrilled to the feel of baby rolling and kicking!

We all went to a Manitoba Moose game - won in OT with a shootout, no less! Nathan and Milena were ecstatic to be back at a hockey game, and Daddy is contemplating buying a "mini-pack" of 11 games for next winter while we live there.

We also took the kids to the Mint and saw all manner of coins being made - Nathan didn't find it as interesting as Milena but he did like buying a roll of pennies in the boutique.

Also, Paul talked his way into getting keys for three houses out of the CFHA, so we checked out three different locations and "styles". Back alleys are all different in the melting spring weather, as are drowned lawns, and leaky basements! It was good to see houses in this condition as a reference for the future, seeing as we'll be moving in in July.

We spent Sunday a.m. at Faith Covenant Church and saw "Speechless" from Providence College. Milena was trying to imitate the girls as they did their musical sign-language. She was totally entranced! It was nice to see some of Kev's ministry there.

Paul and I also had a romantic dinner at "Tavern in the Woods" for our 19th wedding anniversary. It was engulfed in deep, gothic, fog and added to the candlelit atmosphere. We haven't enjoyed such fine dining since The Dove left Barrie years ago!

Kev & Becky bought a cake and decorated the living room/dining room for a combined Nathan/Paul/Laurie b'day party and anniversary celebration. When Paul downloads pics of this trip, I'll post some so you can all see what a great time we had that night. Kev bought Spiderman napkins, and Happy Feet cups, as they'd taken the kids to see Happy Feet while Paul and I went out for dinner. Happy Feet and going to MacDonalds seem to be the highlight of the holiday for the kids. :)

Thanks to both sets of parents for calling us to wish us a Happy Anniversary! It was, and we both feel better now that we've explored 17 Wing and some of its houses, as we journey forth on our 20th year of marriage. Winnipeg is a HUGE city compared to what we're used to, so I have to admit I'm a bit intimidated. I'm sure that'll wear off once we get settled and I find my way around.

MISSION ACCOMPLISHED!

Well, the nurses had to knock Milena out Thursday p.m. with a sedative by 10:30 p.m. because she was too wound up to sleep. :) She knew that IV was coming sometime, and kept saying "I'm going home now," anytime someone asked her how she was doing.

Despite my arguing with the doctor that she be given a pre-sedative before they put the IV in, she wasn't given anything. The doc didn't even bother contacting the anesthetist beforehand - she figured they could give her an Ativan in the scan room. I argued my case that NO WAY would they get an IV in her without SOMETHING, but what does Mom know?

It took five of us to hold her down, and four tries before the anesthetist could get the needle in. No kidding. She was spurting blood everywhere, which only made her more hysterical. He finally got it in her hand and gave her a quick shot of something that knocked her out in about 30 seconds. Then they transferred her to the CT Scan bed, and he nearly knocked the IV out of her hand again because he hadn't taped it down.

I was furious, crying in the booth, but our doctor gave me a big hug and apologized for not sedating her earlier. A little too late! The whole process took 10 minutes; they put dye through her brain too so I was glad we'd anethetized her, as I've had that and it's not a pleasant feeling.

Then the nurses wouldn't let me in the recovery room, after I'd promised Milena my face would be the first thing she saw when she woke up. I was ready to strangle somebody. Excuse given - they couldn't violate the other patient's confidentiality who were also coming out of anesthetic! You can sit in Day Surgery with people coming out of anesthetic and look at everyone there - but not in the "recovery room". Seemed like a screwed up policy to me!

So the doctor sat with me in the waiting room until she was awake and we could take her back to her room. The doc kept apologizing over and over, and then the anesthetist came upstairs and apologized to me as well. Which was very nice of him to take the time, but it shows you how hysterical she was, and how it upset everyone involved.

Anyway, it's over now, and I've learned that Nathan will need one too - so now that I know Ativan takes about an hour to work, I'll really be a mother bear and make sure he gets some (or something) before his is done.

Many thanks for your prayers! :)

PRAYER REQUESTS, PLEASE!

We've got a few things going on with the children that we'd like you all to pray for - this picture is Milena in the hospital on the second weekend that we arrived in MJ.

Tomorrow after school, Milena and I are going back into the hospital overnight and she's scared silly. She's going to be put under anesthetic for a CT scan of her brain, and we'll be going home as soon as she wakes up in recovery. The exact time, in case you like to pray that way, is Friday the 16th at 11:00 a.m.

The last time we tried to CT scan Milena, they gave her three oral sedatives and she still wouldn't lie still on the platform and go back into the CT scanning machine. It's the fear of "falling" backwards or something. She won't even tip her head back at the hairdressers to get it washed! Thus, the need to be knocked out while they scan her.

The CT scan is to look for any brain damage that she might have sustained either genetically, or at birth. The psychiatrist who's examined her orally feels that she's NOT bipolar, as we were told in Richmond Hill, but that her symptoms of echolalia (repeating everything obsessively) and a few other things could be the result of one of the above. The report, however it turns out, will help us in future programming for Milena as to her learning capabilities.

Also, her vision was checked by the specialist again last Thursday, and she's now 20/40 in her good eye, and -950 in her right eye, which means that we're going to start CNIB intervention at school. The specialist took photos of her eyeballs so I could see the retinal damage, and it pretty well covers the entire retina, and most of the "bumps" which could turn into rips are around her optic nerve. Also, there's a space around the optic nerve which didn't close up when she was in utero, further complicating her vision. The only "help" she could have at this stage is to wear contact lenses, which isn't going to happen as she won't let you near her even to put one eye drop into her eyes.

Basically, she's going blind in her right eye. That's the prognosis, but we're thankful that we can get CNIB into school now. She also complains about the fact that she can't see - which wasn't happening a year ago when we moved out here. (she calls it her "buggy eye".)

A prayer request for Nathan: he and I are going to Regina April 2nd to see a neurologist. He had a seizure over the New Year's weekend when he was so sick he had to be hospitalized. A subsequent EEG showed that he has "small seizure" activity - and so we need further testing or consultation to see if he needs to be medicated for petit mal seizures. We've never observed anything like what he had at New Year's, but the doctor told me that petit mal seizures can be as mild as him just staring off into space for a few seconds, and that he's likely had this all his life! The reason to possibly medicate him, is so that it doesn't develop into grand mal seizures. We'll have to see what the neurologist thinks. This has come as a complete surprise to us, and obviously if he's been having seizures they must be mild as no school has ever mentioned him having them, or having "strange moments", as the doc said to me. However, all the schools with their Master's in Special Ed teachers also missed the fact that he's autistic, so there you go!

We'll have Milena's report back next Monday or Tuesday so I'm hoping that the doctor will call me asap to let us know what they found (if anything). Please pray that Milena will stay calm tomorrow night, and that they can get an IV in her without it being a major crisis for her. I'll probably post on the blog again re the results, and/or call Mom and Dad and they can let you all know how she's doing.

Thank you, everyone - we really covet your prayers right now for these two things. Milena is compensating very well re her vision, but she's frustrated about getting tired, headaches, and even though she can't express it properly, she knows she can't see things properly anymore. We now sit in the second front pew at church - and the specialist told me she's likely only seeing people as blurs, with colors for clothing.

We love you all, and are praying for you too!