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.

MIXED EMOTIONS

Emma was confirmed Monday night.

Betsy gracefully accepted to be Emma's sponsor; the best and most appropriate choice I could have ever made!!!

All through the ceremony Emma was fidgety. Moved to the left, moved to the right. And every few seconds she would kiss or hug Betsy, Dakotah and I. I was wondering what Emma was grasping about what was going on. But when came "the moment", with Betsy's hand upon her shoulder, I could sense a change in Emma. She was at peace, and happy. Betsy's peacefulness was filtering through Emma. It was palpable. What a wonderful moment!!!

Then, last night came the results, black on white, of Emma's latest psychological assessment. Numbers ranging from 2.11 to 4 years old, mentions of Moderate state of mental retardation.

Silly me, even if I know that this is only a paper, even if I know that Emma is totally happy and even if I know that I love her to pieces, I shed a few tears. I also read that Emma's ability to adapt is greater than her cognitive abilities. This is good, no? Does that mean that Emma will make her way in this world a little easier because of that? That she'll find her place in the sun?

Why? Why does it bothered me so? When every each day of my life, I celebrate Emma. I love her wit, her sensitivity, her ability to marvel at the smallest beauty or "growl" her discontent.

I don't know. I am still reflecting on that one.

Then, came a beautiful note from Betsy (read her post), and our world is once again a wonderful place to be in. Betsy is always, always good to my soul. Thank you to the best sponsor in the whole wide world! And yes, everyone was envying you and my girl. You two were glowing LOVE!!!

THEY

To me the word "they" is just as bad, if not worst, than the R word.
Of course the R word is not acceptable. But most people do not use it to address people who have a disability. They usually add it here and there, without thinking of the direct effect it has on a lot of people around them. They are not realising the huge implications their selected word have on others. They need to be made aware...
But, I have often experienced this, when people use the word THEY, they are directly talking to me about my daughter. It can be a neighbour, a doctor, an OT, a teacher, and so on.
I heard: THEY (meaning people who have Down syndrome) are so affectionate. (You should hear Emma complaining about her sister: she does not feel very affectionate when her sister tells to get out of her room). I heard: THEY are so perceptive. THEY are usually shorter (shorter than who? Emma who is in grade 2 is actually taller than a girl in her school who is in grade 4.)
And when they tell you this stuff, it seems that they know so much about the subject. They are improvised experts on the matter. Do they even know personally someone who has Down syndrome?
I am always in shock when someone uses the word THEY while talking to me about Emma. I used to give my interlocutor examples of how Emma and another child who has DS are different, unique in their personalities.
These days I am not so patient. I feel like SCREAMING. My daughter has a name, her own DNA, her very unique personality. You do not talk about her using the word THEY. Do I talk about your boys saying THEY (meaning boys) are more active than girls. THEY eat so much more than girls. I know better: these statements are not always the case.
Yes, Emma has Down syndrome. But she is her own beautiful entity. In no way does she react to situations exactly the same as all of the other children who have Down syndrome.
I don't want to hear the word THEY anymore...

WHERE HAS MY BABY GIRL GONE?

Trips to CHEO with Emma used to be tiring. She was fast, she was all over the place. I always had to become "Camille the superhold wrestler" and come up with "holds" so hospital staff could perform their tests.
It did not matter if it was in cardiology, dental clinic, ENT clinic, eye clinic, and so on, Emma would not surrender easily to any of those invasions of her little self. I have to admit, she is quite the fighter. Her wrestler's name might have been "Emma the youngest Houdini of the world".
Could it be that we have both retired from our EOCHWA (Eastern Ontario Children Hospital Wrestling Association) career? Maybe, maybe not...
In the last 3 weeks, we had 3 appointments. She first surprised me by sitting by herself in the dentist's chair. Her teeth were checked, cleaned, polished, flossed and checked again while she sang AH all along. When everything was done she said: Thank you lady!
The second week, Dr. Vacanni checked her ears, Not a problem. A tube had fallen off. He needed to take it out with this long pick or tweezer. Not a problem. She sat there, very still waiting for him to be done. When she was done, she asked me to sit in the chair, took the light instrument and wanted to check my ears while saying: Doctor Emma.
Twice at CHEO, not a wrestling move. Hum, something is definitely changing...
Then came the psychological assessment. The only one she had in the past was not very revealing. Emma was just too active for the DOC to administer any of his neat little tests.
This time, Emma sat there and answered a lot of questions. When she knew the answer, she would point to the right picture and say: Right there with exasperation, as if she thought Doc should know these things. When she did not know the answer, she would simply say: I don't know and move to the next set of pictures. Another fun, enjoyable appointment.
All these amazing appointments were tempting me to believe that my wrestling days are over. But then, Carl and I had to cut Emma's toe nails. And our little Houdini made a great comeback, fighting and yelling like, yes, like a pig being plunged into boiling water.
All in all, I am thinking what a fun ride we are having with this little girl of ours! She is growing up faster now and it is always a joy to watch her bloom. Today she is going to see the movie Earth (for Earth Day), not at our local theater but in Montreal, I hope her EA will keep her eyes on Emma at all times...
Where has my baby girl gone?

TIMES ARE A CHANGING

Well, Amy is now 16; she's got her learner's license since two weeks!!!

The first time she drove my car, I was a nervous wreck! I must admit that she is quite good behind the wheel. I thought that my hair was going to turn white instantly, but I survived.

Emma was saying, from the back seat: "Don't scare me", I was stepping on my imaginary breaks, I was holding on to the door.

Amy said that it was much more fun to drive with Dad. HE was joking around. I know, I have to let go, but I had a hard time coming to terms with the fact that this girl of mine is getting ready to fly the coop. To this day, I had never imagined sitting on the passenger's seat, my baby girl at the wheel.

I am just being silly. I am letting her get ready to fly and I enjoy watching her becoming this beautiful woman, with strong convictions, with a no nonsense attitude.

Tonight, she is gone to a concert in Montreal, along with 2 friends. Carl and another dad will wait not too far from the concert hall, their cell phone "on guard" for the call to get them. When you grow up on a farm, it is quite exciting to discover the city's night life!!! She was so anxious to get going and she looked so beautiful.

Amy is talking about becoming a psychologist. She has chosen her courses for the next 3 years. She rides her horse with such love. She has a boyfriend who is quite nice. Her path in life is starting to take shape.

Now, I get to sit back and watch her take her flight and enjoy witnessing her make a thousand new discoveries a week...

Enjoy the ride, sweet girl of mine.

HERE'S ONE FOR GRAND-MAMAN (PAPA)

My father passed away 6 months ago, today. He was 81. 8 years ago, when Emma was born, he was sad. You see, he was from another generation, an era when people like Emma were either sent away, or kept hidden at home. His sadness was very short lived. He very quickly fell in love with his grand daughter.

He was always very supportive and always marvelled at Emma's bubbly personality. He was my friend, my mentor. I miss our conversations. I miss that man who understood so much... I miss his wisdom.

Emma had a very rough 1st year. 6 weeks of intensive care, 6 months of feeding tubes, an open heart surgery, and so on... When Emma was witty, funny, full of beans, he would tell me: "You know, when Emma was a baby, I really did not think she would make it. Just look at her now!"

Here is Emma's tribute to her grandpa...

My grand-papa, me I was calling him grand-maman. Everytime I went to his house, I would tuck him in in his hospital bed (just like I do with my babies). And, sometimes, I would ask him to get up so that I could tuck myself in in his "cool" bed. And, sometimes, I would just push him over and slide in right beside him.

I liked to play yo-yo with the knob of his oxygen machine, which should be set at 2.5. One time, grandma thought that the kitchen sink tap was opened. Oops, I had turned the knob to 5 and there were noisy bubbles coming out of grand-maman (papa)'s nose!!! Another time, grand-maman (papa) was feeling tired. Mom checked the oxygen knob and, oops, I guess I must have turned it to 1.

Another time, not long before he went to the hospital, I called 911. The policeman was quite nice and everyone soon discovered that it was I who had talked to the lady on the phone. He wrote my name down; I guess I must be a felon...

Grand-maman (papa) really enjoyed his soup crackers. To this day, his house is the only place where I eat that kind of crackers.

As you can see, me and my grand-maman (papa), we loved each other a lot.

My father was in the hospital 6 weeks before he died. During that time, when we visited my mother, Emma would run to his hospital bed and ask: Mommy, where's grand-maman (papa)?

As soon as he passed away, she never went looking for him or asked where he was...

We love you daddy, we miss you. And we hope that up above you are still watching over us and marvelling at Emma's power of love.

PHOTOS

Here are a few pictures of Emma.

I have a hard time to believe Emma is 8 years old!!!

Last year, we had to practice for 2 weeks before her birthday

to change from 6 to 7. This year, Emma knew her birthday was in MARCH, and that on that day she would be 8. She also knows that her sister Amy is now 16, that her friend Paige is now 12, and that Paige's mom (Betsy) is now 25!!! Don't be too happy about that Betsy, Carl and I are 17...

Now we have a whole year to enjoy, grow and discover the world until the next round of birthday parties (we had 3). Can't wait to see what this one will bring our way...

Emma's birthday

Emma will soon be 8 (in 5 days). What a life she's had!!! I remember this little girl who could not speak, who could barely sign. Then the words started to come, along with a few "swear words".

Last year, we practiced for 2 weeks before her birthday, that she would say 7 when asked how old she was. This year, Emma will tell you that her birthday is in March and that on her birthday, she will be 8. There will be a cake, and candles, TOYS, and presents, A PARTY.

Emma loves a party. She prefers birthday parties and tea parties, and beach parties, oh, and picnic parties...

When I look back, I almost can't believe that my little baby girl will soon be 8. She's all grown up and happy as can be. Emma simply loves life. She is so enthusiastic about almost everything. Right now, she's into: "What's that sound?" and "I'm scared", or "Don't scare me", or "I'm sick: Emma doctor" or "booboo, Emma CHEO" (our local children's hospital).

We are sure throwing a party to celebrate Emma's birthday, to celebrate having her into our lives. Actually, we are having 3 parties. One on Sunday with my family, one on Monday, along with her soul sister Paige (whose birthday is one day before Emma's) at school, and one on Tuesday, her actual birth day, with our neighbours.