Paige's angel

Paige, and other children who have Down syndrome, are often described as being angels.
But Paige also has her very own angel. Her name is Betsy. Betsy's main occupation is being a mom. But not just a regular mom.
Besides possessing all of the regular mom qualities, Paige's angel also researches, advocates, rallies other moms, faces adversity with an iron fist. She also has become very fluent with medical terms and their meanings.
Right now Paige's angel is on duty 24 hours a day, 7 days a week. You see, Paige is now facing yet another medical battle, even though she is not quite 11. Betsy faces this new episode in her family's life in the most positive way. And she is humble enough to admit when her (I would not call them duties) daily activities are bringing her down a bit. But don't let this fool you; Betsy will be right back on track as soon as those feelings have been expressed.
Paige's angel, even when her days are filled with functions to better help Paige get through the many hurdles that are popping up right now, also finds the time, and energy, to bring Paige's classmates to their weekly swim. Betsy has a van and generously offered to bus the kids to the pool. Having a child in a body cast at home is not reason enough to back off from other engagements. She also lends a helping hand with our new Special Olympic swim team!!! By the way, all of the little athletes will be overjoyed when Paige joins them in the Spring.
Besides making sure Paige gets all the best care Betsy can find, she also makes sure Paige is being entertained and kept busy while being a lot less mobile these days...
Betsy is right though; Paige is amazing through this ordeal. I really enjoy visiting Paige, and her angel. Paige was so happy to see me, I had extra hugs and kisses, I got sang to and we just had the most magical moment together.
Now, if I could be Paige's angel's fairy, I would treat Betsy like the precious flower that she is. I would offer her little getaways such as an hour massage just down the street while I stayed with Paige. I would send her and her husband to a well deserved romantic supper. I would
find the time to help her with her housekeeping which of course becomes secondary when an angel has to be accessible at all times... So far, all I have achieved is one meal and TOO SOFT homemade fudge!!!
Betsy, may God answer your prayers and may Paige defy the doctors yet one more time!

HELP!!!!!!!!!!!!!

I need help.
Emma swears.
Since a while, she has been saying J-C. At first, only us knew what she was saying because she couldn't pronounce it very well. But being the trooper that she is, she has perfected her J-C to a very clear swear.Carl was bringing groceries to the car, Emma was sitting in the cart. They hit a bump on the pavement, and there goes Emma: J-C, loud and clear. The problem was she said it just as an older lady was passing by. She lifted her head in shock, wondering if she had heard right.
We have tried to tell her that her saying this word is not nice. We have tried to redirect her to say Jee Whiz. It only works sometimes...
But this is the least of my worries...
I will admit that she might have picked up the J-C word from home. No, we are not perfect; far from it...
Here is my problem:
Since she is back at school, she has started to say, get ready for this, " Ha, F...". This is terrible. And it did not come from our house.
Emma used to growl or whine when things did not work her way, now she says: Ha, F... And this one is very clear, thank you very much!!! We are all in shock. She seems to say it at the appropriate moments...I keep repeating to her not to say that, that it is not nice. It doesn't work. Try to make her say: Ha Fudgesicle... Hmmm, I need something more convincing. The other day, I had 3 teenagers in the car. At one point, no one was talking. And of course, the dreaded curse came out of Emma's mouth! They all started to quietly giggle. They nearly had me going too. But I had to say something, it seemed a very weak effort from my part.
Emma is in a regular grade one class in the morning and in a Live and Learn class in the afternoon. Last year, they were 5 children in that class. This year, the class grew to 8 or 9 children. Did she pick up that bad word from the older children? I don't know. But she also did something weird the other day. Emma was holding a hockey stick and she would say: Growl, kill you. I looked at her and said: Caillou (a t.v. character in Canada). No, she said. Growl, kill you.
I need to talk with Emma's teachers. I do not want my little girl to carry that kind of language. Is it just a phase?
I need guidance, I need reassurance, I need ideas, I need help!!!

I MISS YOU PAIGE

I miss you Paige...
Paige is that beautiful girl who was born 4 years and one day before Emma.
Paige is the very first child who has D.S. that I saw after Emma was born. In a "Down syndrome kit" that was given to me at the Children's Hospital, one hour away from home. Here she was, in that kit, cute as can be, offering me her mommy's attentive ear to listen to my apprehensions. And guess what? She lives only 15 minutes away...
Paige is that knock out Blondie, who I could watched blossom and break barriers; then I knew Emma would get there too someday...
Paige is that angelic face that never fails to produce gorgeous pictures.
Paige doesn't talk much, but she makes these unique, musical sounds that are so appeasing...
Paige is that school pionneer who inspired me in choosing Emma's school; a decision I have never regretted making...
Paige is that water godess who can float around the pool so leisurely, her hair up, appreciating a lazy moment of relaxation...
Paige is that girl whose older sister loves to pieces. Dakotah is always there for her little sister.
Paige is that girl whose mommy dresses up like a queen. Always trendy, always chic, she is a fashion card.
Paige is that girl who shares her whole family with dozen of other children who play baseball every Saturday of the summer...
Paige is that girl whose daddy is quiet, but, oh, so present...
Paige is that girl that Emma bosses around sometimes and yes, she puts up with it!
Paige is that girl that made me discover a wonderful friend: her mom, Betsy.
Paige is the one who introduced Emma to horseback riding.
Paige is that ray of sunshine who always shares her toys with Emma when we arrive at her house, more often than not, unannounced!
Paige is the cutest 10 year old girl I know who, when she sees me, comes straight to me for a hug... Or I should say, hugs. Because, you see, when Paige and I see each other, we hug, we snuggle, I talk to her, she sings to me. And while we catch up with each other, nothing or nobody else exist. This is our special moment and she is my special friend.
You see, I used to see Paige at least once a week. But I am back to work now and can no longer make it to the weekly swimming meet. If you ask me what is the hardest thing going back to work, I truly have to say, making it to the pool for my weekly hugs...
I miss you Paige!

MY VERY OWN "HAPINNESS TONIC"

Emma never ceases to amaze me.
Actually, she very often blows me away. She is my source of energy, hapinness and complete freedom of the soul.
Her mind is constantly looking for stimulus. Her imagination has no limits. And if I play along with it, its brings me such pleasure.
This morning, while waiting for the bus, we were signing "The wheels on the bus". After signing a verse or 2, I started to say: The......Emma would add "cheesies", then we'd sign the cheesies on the bus go CRUNCH, CRUNCH, CRUNCH. The....Emma said BURT (from Sesame Street), then we'd sing The Burt on the bus go HA-HA-HA. Then she said ERNIE, we'd sing The Ernie on the bus go CHI-CHI-CHI, with our hands in front of our mouth (just like the caracter). Then I'd say The.....she said cat, The cat on the bus go Meow, Meow, Meow. And the dog, then came the letters of the alphabet: The W on the bus go Wa, Wa, Wa. And so on...
The way she embarks on these games is awesome. I really get into it with her and it completely takes away anything else from my mind.
Aren't I lucky to have my very own, unique, live-in therapist?
I hope Emma keeps this aspect of her personality as she grows. I certainly will do my very darn best to preserve her bubbliness. I can see us signing together when I am 65 and Emma is 26!!!

ARTHUR MILLER AND THE MISSING ACT

After writing my post about: An amazing soul, I went browsing on my friends' blogs. Amy brought to my attention an article in Vanity Fair, about Arthur Miller having a 4th child…Daniel, who has Down Syndrome. (find it on the web: Arthur Miller and the missing act)

I’ve always told myself I would not pass judgments on other people’s decisions… The content of this article made me think, think hard.

Even though I tried hard to imagine the context some 40 years ago, it was not easy for me to find compassion and understanding. But I succeeded; I will not pass judgment.

But stories like that do make me sad. I am sad for all the missed tiny moments people like Mr. Miller denied himself, and his son.

All I can think about is : If only they had known…. The joys, the warmth, the lessons my daughter enriches me with, Mr. Miller and his wife would have held on to Daniel as their most pecious gift...

AN AMAZING SOUL

Later on, you will see where this is leading to...
Emma is now 6 1/2 years old. She still wears diapers. The inside of her legs look like elephant skin. Also, in the back, she has this sore that just won't go away. Doctors have given us about 4 different kinds of ointment. Those bad spots just don't go away. So Emma and I apply "cream" on a daily basis.
This week was quite busy for everyone. I am back to work after 4 years of being at home, Amy started high school and Emma is now in grade one and goes to school every day. All week, I could tell this daily schooling was quite tiring for her. She whined a lot, was less patient, and went to be much earlier...
Today, Emma and I were "outside" in our p.j.'s at 7:30. Then I did a bit of cooking and baking, took her back outside for another little while. Then I had to attack the pile of dishes, and later on, start the 3 loads of laundry that were waiting for my attention. Through it all Emma was whinning: "Mommy, outside. Mommyyyyyyyyyy, outside". While I was washing the dishes, she brought her little bench right beside me, got up on it and tugged at my arm: "Mommy, outside, Mommyyyyy, outside, MOMMYYYYYYYY OUTSIDE". God, how much more patience can I extract from way within myself?
That whinning lasted until about noon. Then, my friend who had a mastectomy only 10 days ago, showed up. She asked if I could change her bandages. Of course I would. We ripped the old stuff away. Her incision is quite large and still stitched with staples. Emma was still going on about going outside. I showed her my friend's wound and told her look,
" " has a booboo. Emma looked and took off....
While I was cleaning the wound, Emma came back with her "butt cream" and said : " ", for you, cream".
After feeling on the verge of having no patience left at all whatsover, here is my little girl, offering relief to our friend who has a booboo. We both went: "Ahhhh, Emma, that's so nice, thank you very much!!!" Of course, we had to pretend to apply the cream before putting the new bandage on. Emma even helped pulling the part that you peel while leaving the see through tape on.
Moments like that always make me think about those people who believe our lives have lost some of its "glitter" when Emma joined our family. How wrong are they? If only they knew...

MY BEAUTIFUL AMY ON WINSTON

Today, was Amy's last horse show of the season. She did well on her beloved horse.
Amy is now attending High School. I am so proud of her. She has met and introduced herself to all of the special need teenagers who go to her school.

So far, she has had a 5 minute late notice (because she wheeled Catherine, who has cerebral palsy, who had a sore back that day, to her class!). She also met 2 guys who have Down Syndrome. They were trying to squeeze Catherine's wheelchair through a narrow doorway. Amy offered to help, but just guided the front of the chair while letting the guys push. I love you, Amy, you have a great soul!!!

WAITING FOR THE BUS

EMMA AND I HAD SO MUCH FUN WAITING FOR THE BUS!!!
ISN'T SHE A CUTIE???

A DAY OF SHOPPING

For those who don't already know Emma, let me tell you that she is a very bubbly, busy girl. She's got personality. She is playful, energetic, ALWAYS ON THE GO.
When in large buildings, Emma usually gets OVERSTIMULATED. I must admit she has somewhat slowed down in the last year. But people who meet us still tell me, Wow, she is busy... I wonder why???
While on vacation, walking in a restaurant, Emma was really loud. You have to understand, we've been in the car for many, many hours. As I took her to the bathroom for a quazillion diaper change, I told her we were going to have supper and that we should be QUIET. She behaved so wonderfully throughout the whole meal, I thought I was on to someting...
Back home, I decided that Emma and I would go on outings more and more often. So while Amy and her boyfriend Jesse had their day full with piling wood than go-karting with Carl, as a reward, I set out with Emma to do the school supply shopping...
First stop, the school supplies store. She sat in the cart the whole time. I was offering her choices as to which pencil sharpener she wanted, BLUE or RED. She said red. Okay. Then, said blue. I turned around, got the 2 colors again and asked her one more time which one she wanted, she said blue, so blue it was. And so on. She chose pencils, erasers, even binders for her sister!
So far so good... We were now headed to my favorite Thrift shop, a place I haven't been to in quite a while. We were going to look for clothes for Emma.
Again, she sat in the cart the whole time. I was amazed at how nice the clothes were for children. So I kept putting stuff in our cart until it was quite full. Emma would sometimes put stuff in too. And I was putting it back as best as I could.
Then I thought she should at least try on the pants because Emma is a bit bulky at the waist. Don't get me wrong. She is far from being fat. It's just that she is short and that makes it hard to choose the right size in pants. I had sizes from 6 to 10...
We entered the change room, with the cart, and set out to try on at least the pants. One, two, three, four, and, so on... Emma kept on trying pieces. She was looking at herself in the miror and was saying either NICE, CUTE, or BEAUTIFUL. And if I told her she looked beautiful, she would tell me THANK YOU. So we kept on trying, and trying. I felt that at any moment she would have enough, any child would. I was kneeling the whole time. I was sweating from being restrained to such a small area. But hey, we had a thing going on, I wasn't about to stop.
I simply could not believe it. She tried everything there was in that cart. At one point, I saw a jean jacket I knew I had not chosen. She must have put it in the cart. So she tried it on too. WoW, she looked so grown up. Of course we had to buy it. And we only discarded 3 items...
Emma has learned a new word: SHOPPING.
Believe it or not, we bought 14 shirts, 8 pants, 3 p.j.'s, 1 dress, 1 skirt, l jean jacket, 1 hoodie, 1 pair of shoes and, yes, a Halloween costume! Emma had tried on at least 33 pieces of clothing!!!
The whole experience cost me 120.00$ Back at home, my husband thought I had gone mad. Hey, how much clothes would she have gotten at a regular store??? I cleaned her dresser and threw out all the stained stuff. Yes, Emma is ready for school. And, yes, I shall go out with my girl more often. We had so much fun. There was no chasing her around, there was no noodle flops on the floor, there was no yelling or whinning. Hey, she even said the whole alphabet to a staff member.
Yes, Emma, we shall go SHOPPING again togerther, soon...And thank you for such a fun day!!!

OUR SUMMER VACATION

We're back from beautiful P.E.I. Our one week trip was just awesome. First of all, travelling with Emma is simply a joy. Just keep the chocolate milk flowing and Emma is happy; mom too, as long as we stop often enough to change diapers... We had music for everyone. From Arlo Gutrie to Willie Nelson. From "Bad to the bone" to "Puff, the magic Dragon". From Queen to Raffi, it was a long musical drive.
First thing we did on the Island was head to the Joy Riders, therapeutic Riding Stable. Emma was treated like a queen. She enjoyed a beautiful ride on the P.E.I. red earth. It was very special for me that Emma too, also had plans of her own. Carl went deep sea fishing. Amy and Jesse went kayaking, go karting, trail riding. I enjoyed browsing in the numerous craft shops.

We all enjoyed the ocean, especially Emma. She loved watching the waves rolling in, yelled GO as they arrived close to her and jumped over or through them. Emma also rode at a "regular stable" while big sis and her boyfriend were on a trail...On our last evening on the Island, Amy and Jesse babysat Emma so Carl and I could have a nice seafood supper on a terrasse by the ocean. LIFE IS GOOD!!!

Coming back, we slowly drove through New Brunswick. We visited a few attractions, bought sea food, drove along the scenic shoreline. The plan was to make it to Quebec by suppertime, and, find a motel. Plans often do not become reality. By 8:00 p.m., we reached the first City in Quebec. There was not one room available. We had supper and kept going to the next town. NO VACANCY. The the next town. NO VACANCY. Somewhere along the way, Carl said we were wasting precious time looking for a hotel. If we kept going, we'd be home by 5:oo the next morning... Whoa, I said. Surely, we'll find something. NO VACANCY. Emma fell asleep at around 11:30 p.m. Every time we stopped, she would wake up and say something like: "Bathing suit, the beach" and go back to bed. We laughed so much. Once, she woke up and said her favorite swear word: J-C. I could not believe what I was hearing.!!!

My husband is always right. We were home by 5:00. I had stayed awake the whole time for fear he would fall asleep. He would not let me drive. My fear now was that Emma had slept enough and would want to stay up. Oh God, what would I do? But no, I changed a quazillion diaper and took her with me in my bed and we slept a blissful 4 hours!!!
Before we left, a lot of people were asking me what I was planning for myself during our vacation, and for me, the happiness my family brings to me is all I really need. The interaction with Amy's boyfriend and Carl. Everyone's sense of humor. Hum, my snoring, even though I still say it is Carl who snores, Amy's WHITE legs at the beach, Emma's Hi, my name is Emma to each and every stranger she met. Every moment was a joy!!!

ONCE AGAIN, WE'RE BACK!!!

I am so happy! After 4 months of fruitless efforts, I finally managed to enter into my own blog!!! I believe I am a smart person, but for some reason I could not access my blog. I console myself by thinking Eh, I am a people person, technology comes lower in my skill assets...

Wow, 4 months to recap... Well, Emma has graduated to grade one, and Amy to High School...

Emma's physician thinks that maybe Emma has ADD. Whoa, is that why we are always so busy??? The doctor says that, at 6, Emma should be starting to slow down. We will assess her to find out in the coming year. My reaction was: Okay, I always thought that no children of mine would be put on ritalin. I would not want to diminish, in any way, Emma's bubbly personality. The other side of me, was JOKINGLY thinking: Quick, where is the ritalin; will I finally rest?

But seriously, I have spoken with Emma's teachers and aids at school. They all had the same reaction. No. Emma does not have ADD. She can stick to one activity for quite a while. When she stray is mostly because she doesn't see what is happening. Emma has a focus problem with her eyes... I know, I might have spoiled her by giving her a lot of my attention, and, when I am busy having a conversation with someone, she will try VERY HARD to get my complete attention back to her... The doctor is impressed because Emma knows all of her letters (big and small), she is trying to read by spelling words (p-o-o-h = caillou) and she can count to 12. Her perspective is that if Emma slows down long enough, she will learn so much more...

We shall take this in strides: wait and see. I certainly won't rush into a decision I may later regret... If any of you great people have the same dilemma, please let me know your opinion on the subject.

Summer so far: Amy is quite busy with the riding circuit. She is doing fairly good; always coming home with some ribbons. She won 1st place in her division in the 4H judging day. She was the "one on one" helper for a little guy who has ADD at a riding camp. She really enjoyed that experience.

Emma is swimming like crazy. In the fall, we are starting our very own Special Olympic swimming club!!! She also rode in the Spring-Summer therapeutic riding session. She has improved so much this year. She goes on trails, she now holds the reins and pulls as she says whoa to stop, she dismounts properly and she helps groom the horse. Unbelievable... She is going to ride in P.E.I. on Aug. 7th!!! This is so exciting. I contacted the therapeutic riding association there and they have accepted to have her riding in their club during our vacation... They are bringing in the local newspaper to talk about their small Ontario guest!!! This will promote therapeutic riding both in P.E.I. and our region of Ontario. And Emma also gets to do something she loves during our family vacation. AWESOME!!!

Emma and I, have also tried baseball. Ask Betsy, I have lasted only 2 weeks. I have to run, and run, and run... Emma enjoys batting but has no interest in the rest of the game. She targets cars (for their seat belts) and baby stollers (for their buckles). The child is absolutely "mesmerized: by these 2 contraptions... What kind of world would this be without seat belts and buckles???

Since Emma is going to school full time in Spetember, I am going back to work after being home for the last 4 years. This is a little bit scary. I have found the perfect "part time" job in a bank. I will work only 4 days for about 16 to 20 hours a week. I am very calm about facing this new page of my life. You see, Betsy did this about 2 years ago, and, I have her to inspire me.

So, enough about us, I am off to read your blogs!!! Yuppi!!!!