to my father

Last Sunday, was a year already since my father passed away. Time is a mystery to me; where does it go?
There was a mass in his name and then the church held its annual fundraiser, the Thuya show. It is a musical that covers the 50s to the 90s' songs. What a great way to spend that day; people who lived in our tiny town years ago come back for this event and we sing, we dance and get reaquainted with old friends and neighbours.
My first year without my father has seen me very okay with his passing; he had such a special life and illnesses were taking a huge toll on him. But I really miss our conversations. I could talk to the man just about anything. He would listen without judging, he would never offer that kind of small talk that pretends problems don't exist or waive it as nonexistent. Once in a while, he would offer an encouraging comment. He would not try to magically solve things for me. He would simply listen and let me process thoughts and feelings through...
I miss you, dear man.
During that day, we found out that Beth, a friend of ours who was battling cancer, passed away in the morning. It kind of comforted me to know that my father was there for her...
Love you dad...

EMMA'S LATEST MISHAPS

The week before school started, we went on a last day trip. We took the girls on a boat cruise through the Thousand Islands. Emma was wearing hip huggers. On the highway (it's a 2 hour car ride), she kept saying diaper, diaper. I asked Amy to help her fix the problem. Again, Emma started to scream HELP, DIAPER. Amy said that Emma's pants were at her knees (most uncomfortable). We had to stop and fix that problem once and for all. I love those pants that have an elastic to adjust the tightness at the waist...

The ship has 3 decks. We chose the middle one to be outside since it was such a beautiful sunny day. Emma was not so sure about this adventure. A loud voice kept describing the islands on a speaker. Emma does not like anything LOUD. She kept walking half bent and running back to us saying I'm scared. At one point I took Emma to the bathroom. Now, you have to remember that Emma has bowel problems... So I changed her diaper and cleaned her in a very restrained area. So later, when she needed to go again, I asked Dad to take her. Emma went in first and Dad took a second too long to follow her. She slid the door shut and as it hit the end, the lock fell in place and here we are, Emma has locked herself in the tiny bathroom. She kept yelling I'M STUCK, I'M SCARED. I tried to coach her through the steps to unlock the door. In the girls' bathroom, the lock was a simple hook. Must be the same in the boys' bathroom... Not so. Dad and I are on our knees giving her instructions, Emma is yelling and Amy is sitting back enjoying the scene. Then I noticed a bunch of people watching us instead of what they had paid good money to see: our picturesque surroundings...

Dad got a crew member to assist us. They tried sliding a credit card, they tried shaking the door loose. Nothing worked. Then the man said to Emma MOVE BACK! No, No I said, wait. Then I told Emma GO WASH YOUR HANDS because I knew Emma would be away from the door since the sink was on the outside wall (in the girls' bathroom), if she listened to me... He then knocked the door open with his shoulder. And there was my little girl saying I"M STUCK! All this took about 10 minutes but seemed like an eternity... She sat quietly between us until we reached firm ground.

Emma missed her first day of school. She had 2 appointments at CHEO (children's hospital). We spent most of the day there and we finished with the least enjoyable task: BLOOD WORK. They took 7 vials out of her. My little girl is THE STRONGEST GIRL IN THE WORLD!!! I had to give Dad a crash course on some wrestling holds. So we "pinned" Emma all the while she was yelling ALL DONE, I DON'T LIKE IT!!! Again, this predicament seemed to last for an eternity. And, then as soon as it was done, Emma got up and said to the lab technician, THANK YOU LADY!

Not only bad things happen to my little sunshine. This week, after talking about her all summer, Emma finally got to see her friend Betsy, and is still mesmerized by Paige's purple stroller. Oh, and guess what, we sold Winston this past Thursday. Emma's very own horse "Casey's Command" is coming to our home tomorrow!!!

SUPER AQUA CLUB

At least once every summer, we like to go to the water slides park.

Emma is getting older, and taller. She is now exactly 4 feet. 4 feet is the mark every kid wants to reach in order to be allowed the go on the BIG SLIDES...

Last year, Emma did one or two bigger slides (the ones on which it is permitted to sit on an adult's lap).

Well, guess what? Emma's new gig this summer is: I'm scared!!! She would not go on any bigger slides, not even the ones she did last year. Oh well, she had a ball on the kiddy slides and just loves the wave pool and the lazy river. It was great to watch her go up and down independently. She would wait her turn and initiated some races against other children.

As for Amy, who could not find a friend to come with us, she was stuck with her parents. Dad tried to go with her on a BIG ONE. But guess what? Dad is afraid of height, so after 2 flights of steps, he told her he had to turn around or he would have a heart attack!!!

I did go on some BIG SLIDES with Amy, but she had to wait for me as I struggled to go up the 90, yes, 90 steps to reach the top. When I got out of the car after the one hour drive back home, my left hip and knee would not support me. Carl, who is not a water person, was "waterlogged". Talk about having older, out of shape parents...

We shall go again next year as this outing has become a tradition...

AMY'S FIRST EVENT

After yet another rocky season debut, Amy finally participated in her very first eventing competition.

There are 3 disciplines in eventing: dressage, stadium jumping and cross country.

I am very proud of my girl, but mostly I am happy for her. I am happy that she gets to do something she really, really enjoys. The first 10 gets ribbons. Amy placed 8th out of sixty riders in her class. Way to go Ame...

Last week we went to look at a horse for Emma. Her name is Casey's Command. She is a 15 years old Palomino quarter horse who was trained in reining. My cousin who owns her showed Amy how to "spin". Amy, of course, is in love, AGAIN. The best part, though, is that Emma also rode her. And it went great. Casey is small enough for us to walk beside Emma. And she is so calm. We want her so bad but we need to let go of 1 horse before Casey can come home with us. A lady is coming to ride Winston on Monday. Amy will be so sad to see him go. He was her very first show horse, but she is willing to do this so Emma can have her own horse.

Did I mention that Casey is pregnant? By the end of next June, we should have a foal in our field!!!

This Fall, I will get rid of my fear of riding. I will take riding lessons and ride Casey. Then I will truly be able to share with my girls their love of riding. Wish me luck!!!

BEACH PARTY

Last Monday, Emma finally had her Beach Party,'.

Carl chaperoned a bus full of teenagers to 6 flags' La Ronde in Montreal, which he survived.

That trip was going to be too much for Emma, since they were staying until closing time, so we went to the beach instead.

Emma always talks about either a tea party or a beach party. We just love parties...

We were in the water for about 3 hours. I had to coax her out to have a drink and snack. We built sand castles (Emma likes to sit on them...) and she made lots of friends.

Old mom here was all tired out...

We are now getting ready for a huge family gathering (140 people) at our house. Got to love the weather man who is calling for nothing but heat and sunshine...

I'll take you to the beach again, little girl, since you love it so much!!!

LIVING ON A ROLLER COASTER

The last month has taken us up and down, and all around.

First, after a few months of not feeling well (swollen glands, throwing up, lack of appetite), we finally found out that Amy has mono. What a bummer for a 16 years old. Her main concern was "How long will I be contagious for?" With a fairly new boyfriend in her life, having mono is a worst case scenario... The poor child. Last year her horse was hurt which put a damper on her competition season. This year she has a great horse to compete on but the rider is out for at least a month due to an enlarge spleen... The season starts yet again without her.

Then, one day as I was painting the deck, Carl picks up the phone in the house. He then comes out to tell me: "You are not gonna like this. Emma got into a fight at school and she got bit by a boy on the cheek. " WHAT??? Since he didn't have too much details, I called back the principal.

She told me nobody really saw what happened but they figure this boy was at the top of the slide, not going down and Emma must have pushed him to go down. He did not like this and bit her in the face. She did not cry and they put ice on her cheek and the swelling came down.

Later I talked to her EA, who told me a completely different story. What am I to do? Emma came off the bus and showed me her big "bobo" and kept saying: Emma, doctor. My feelings were mostly concern. Emma meets life. Things are bound to happen. How do I protect her from harm? How do I prepare her to avoid bad situations? She is so enthusiastic and always willing to jump in where the action is.

Then on the eve of Amy's doctor's appointment to take a look at her spleen, I hear wailing coming from upstairs. Emma is already asleep. These painful sounds are coming from Amy's room. She's on the phone with boyfriend. I kind of know what is happening and am waiting to offer some kind of comfort to her. I now hear a big bang. Emma fell off her bed!!! I need 2 of me; can't be there for both my girls at the same time! Dad goes tend to Emma and I just rob Amy's back as her world is coming apart. We slept together; my heart was broken for her. She went to the doctor wearing sunglasses on a very cloudy day...

But to my surprise, she bounced back pretty good. She surrounded herself with friends and activities saying the mono is gone. Hmmm... She came home one day from school and went straight to bed.

Then last night, at six o'clock I suddenly got very tired. I asked Amy if I could nap for 1/2 an hour, would she watch Emma. Emma would not have it. She came with me, sat on by bed and kept talking, and talking, and talking. Mommy sick, mommy tired, mommy sleep... I wake up with Emma sound asleep beside me. She slept from 6:30 to 6:30! Again tonight she went to bed quite early. Oh no, could she have mono? We are being so careful with Amy's glasses and toothbrush, and everything else.

We ride the waves. The girls are growing up with bumps on their paths. All I can do is steer them clear when I can and just be there for them when I can't and all these bumps will lead, with experience, to a smoother landing...

psychological assessment (what does it mean?)

Emma's description of her first communion: "princess and church castle". Isn't she adorable?

It went so well. I was afraid Emma would refuse the Host but no, she did everything she was supposed to do. At home, when we were practicing, she would say Amen, and then Hmmm, popcorn!

After pondering over why reading Emma's assessment made me cry, I've reached a few conclusions.

Living with Emma is such a wonderful experience. I am always surprised, taken aback when people tell me "It must not be easy having a special need child." or "You and Carl are so special for the way you deal with things?" I never quite know what they mean. My answer usually sounds like, Oh, quite the contrary, Emma cheers us up each and every day of our lives.

I am always so proud of Emma, I always see her wits. Some little comments she makes show me she understands a hell of a lot more than people give her credit for.

To me, she is as "normal" as it gets. She is simply Emma, my little girl who is as sharp as a stiletto heel. Emma never misses much of what is going on around her. She is my little social butterfly, always super happy to see anyone who walks into our home, always greeting people wherever we go.

I am so busy celebrating her being that I forget what a regular 8 years old is supposed to be like.

That is why I guess I was a little bit shocked at reading this cold, systematic assessment of her cognitive development. It brought to the surface a reality that I tend to forget. I do not live in denial, but in complete acceptance of who Emma is, never comparing her to her peers.

My conclusion: I would never ever trade Emma for a paper that said my 8 years old girl acts, thinks and behaves like a regular 8 years old should.

The conclusion of her assessment said that she was still entitled to the services she was previously receiving. In other words, she still has Down syndrome, she is still mentally delayed.

No guidance for next steps, or paths to follow. So I guess we'll keep doing what we were doing: follow our instincts and keep on loving her to pieces.