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.