The Signs - Part Three!

Speech:

When Paige was about 3 or 4, I started having concerns about her development. At two, she had Speech Therapy every week. She was repeating sounds, and filling in the blanks on songs when we stopped…like Old MacDonald had a ….she would sign an animal and try to copy that sound.

She had words, and even though there were not many clear ones to anyone but us, they were purposeful and meaningful to her.

Today, she doesn’t even seem to connect with the idea of repeating after us for words. She still has a few words, perhaps 5 or so. But, they come and go. She will have a couple of words that stay for 2 or 3 months, and then, they are simply gone.

She also has a very “sing songy” voice – not the typical deeper voice you sometimes hear from a child with Down syndrome. Its lilty and sweet – one of my favorite things about her. And one of the things that led her doctor to diagnose autism.

She is a “singer” – she loves to hum, and play sound games, she will sing “dee-ah” or “nay-nay” or combinations of sounds as she entertains herself. These sounds she will repeat when we say them. Again, these groups of sounds change, and when she loses them, they don’t return through any prompting by us.

Skills:

Paige has very scattered skills, as opposed to just being slow to acquire skills. Apparently, children with T21 will typically gain skills in relatively the same order as other children, albeit a bit slower.

When Paige was 2 or 3, you could put 10 videos on the floor; she could pick the one she wanted out, put it in the VCR (now the dvd player!), change the channel on the tv to the “video” and then push the correct buttons to start her video. She had favorites and knew how to use the fast forward or rewind button to get to the exact spot in her movie that she wanted to see.

Although she liked watching TV, she had favorites, and nothing else seemed to catch her attention. She loved “Who Wants to Be a Millionaire” and we swore that she would recognize the words on the top of the screen as we were flipping channels before the show actually came on.

She also loved watching bowling and golf on TV – go figure!!!

Since she was a tiny, tiny baby, she has never once looked at a book upsidedown. Even at 5 or 6 months, she would turn a picture book up the right way before she would look at it.

Although we don’t *think* she can read much past sight words at this point, she love, love, loves books, and will look at magazines for hours. Her favorite…a phone book or an encyclopedia.

Paige can conquer a wooden puzzle very quickly. She understands that toys need batteries replaced, and that you need batteries and a screwdriver to fix them.

She has some music toys that are her favorite that she will play over and over again – some of them have dozens of songs on them, but she knows just how many times she needs to press the button to get the song she wants to hear—and she will choose one or two favorites and listen to them over and over again.

She conquered "Starfall.com" very easily - she could very quickly match letters, drag them to where they belonged, etc. She is very good at the computer.

But, at 10 years old, she still is having a very difficult time identifying simple body parts, like her nose, her eyes, her mouth. No matter how many ways we try to teach that to her, she just doesn’t seem to be able to connect to that.

Quirks:

When Paige learned to crawl, I used to take her to a play group. The room had a vinyl floor on it, that was white with intermittent black squares. We used to laugh at how Paige would only crawl on the white squares – how the black ones would stop her dead in her tracks and she would go around them.

She does that with my tattoo too – she will touch 2 of the ladybugs, but will not, not, not touch the third one.

She had some sensory issues as a baby – she hated to have dirty hands, and the tiniest amount of food on them would mean she would not eat another bite.

She also was very temperature sensitive to food – she drank her milk warm until she was probably 5 or 6 years old.

However, she is not a picky eater now, she eats a very good variety of food.

She has a thing with lights – certain lights in our house have to be turned off – she doesn’t like them on at all.

She has always loved her hands – she will “talk” to her hands and just put them up in the air and stare at them for a very long time. We have pictures of her doing this throughout her lifetime. She loves touchy things and will take the corner of a blanket and run it up and down her arm for comfort. She will also take one of my fingers and do the same thing.

She also loves playing in the sunshine as it comes into our windows, and will position herself throughout the day in the sun rays. She loves holding her toys or hands up and making shadows. She can do this for a long time - two hours at a time sometimes.

She has favorite toys that she will be very attached to for weeks at a time. Again, when she is done with them, she is done. It always takes her a very long time to like a new toy that we introduce.

She has never spinned toys or played inappropriately with toys, but she is a spinner herself. We have timed her spinning in a circle for as long as a half hour, humming, listening to one of her music toys. When she stops she is not even remotely dizzy.

But, even with these kind of strange things, she never has really insisted upon anything…she has never thrown a temper tantrum because her routine has changed, or ever appeared to get upset because we tried to distract her from what she was doing.

In fact, it has really been just the opposite – even when she was a baby, it was hard to find incentives for her – she could be playing with her favorite toy and you could walk along, take it away from her, and she would just get another toy.

Some of the real “eye openers” for me in talking with the doctor were what he described as “indiscriminate affection” – she is affectionate and lovey, and huggy with everyone…something I thought was a SURE sign she was not autistic.

She also asked if she cried or laughed frequently for no apparent reason. Paige never cries. I cannot even remember the last time she cried. But, she does have giggle fests that sometimes last a half hour or more. And we don’t always know what triggers them.

When she was about 3, we couldn’t even turn on “Who’s Line Is it Anyway” as that show for some reason sent her off into a giggle fit that would make her have to lay down to catch her breath, and give her hiccups.

Looking back, the very strange thing is, we would have to actually skip the channel, as, like I already said, it seems as if she would recognize the show from the words at the top of the screen, before the show even appeared!

Who knew! I thought she was just a happy kid!

Another question that really threw me was the doctor asking if she came to me for comfort when she was hurt.

Honestly, I cannot remember a time that Paige has displayed pain since she had her gallbladder out at 2 or 3 years old. She has such a high threshold of pain that even when she has had surgeries, the surgeons are amazed at how little pain medication they have to give.

I was kind of stunned at that one – she has never been hurt – she has never fallen down and cried, never seemed distressed, etc. She has had ear infections so bad that her eardrums burst, and she happily played and acted normal the whole time.

Still, she was, what I thought, atypical of a child with autism…she is so easy going, so friendly, so happy all the time. She is not adventurous, or a risk taker.

She can entertain herself for hours on end. I dare say we could leave her in the living room for 4 or 5 hours and come back and find her quite happy and content, playing with her toys (not that we ever actually do that, lol!!)

I will add more things as they occur to me.

What a kid she is!! So cute, and so very loved!

More Ramblings - Part Deux

Many of you have asked me about what I think were the signs of Paige having autism. Its funny, as I start to list them out, I kind of feel like “duh…no kidding she has autism.” But, when you have a child with special needs, and I think most especially when you have a child who has had a lot of medical complications, the mind can be a funny thing…

You worry that you are worrying too much, and then you worry that you aren’t worrying enough. You don’t want anyone to think you are crazy because you wonder if that bruise is a result of a bump on a chair or if its leukemia. Conversely, you are convinced its just a cold, and it turns into pneumonia.

It’s a strange balance that we must somehow find…and there was a time when Paige was very little that the only diseases/syndromes, etc. that I could rule out in my own mind were those she couldn’t have simply because females or white children, or whatever, couldn’t get them. Everything else, from cerebral palsy to degenerative diseases, to wondering if she had had any sort of birth injury was fair game to me.

But…I made peace with that, and came to know that my daughter was simply…my daughter. With whatever blips and bumps and genetic goofiness she had – she was Paige.

When we finally, finally found her gallbladder problems, I was like “OF COURSE!!!” I beat myself up – why didn’t I know this?? It was classic gallbladder symptoms. But…no one caught it…not doctors who (probably, lol) know a whole lot more about it than me! :)

So, perhaps I should have figured this out earlier. And perhaps not. Perhaps something happened somewhere along the line that caused this – and, then again, perhaps not. I know there is lots of speculation about immunizations, at the same time – she was in and out of the hospital nearly a hundred times in her first years of life - would I have forgiven myself if she caught something because I had refused them?

In the end, I will leave this research to someone else. I still believe that Paige is not broken and does not need to be fixed. If anything, I feel even more connected to her now, as there is a rhyme and reason to some things, and that will help us to help her learn even better.

Anyway, as best I can, I will list some of the things that I believe are symptoms of her having autism. I will add to this list as I think of things. My hope is that some of you will find great relief in knowing that is not something you need to worry about for your child. And, statistically, some of you may want to investigate a little further as 1 in 150 children are now diagnosed with some form of Autism.

Please know that every child is unique – and these are just Paige things I’ve noticed. Also, please understand this is 10 years of things – she is very much just a sweet little girl who joins our family in all of our activities, who laughs and smiles, and has a pretty normal life – whatever normal actually is.

And now...heeerrrrrrrrreeeeeee's Autism (Part one)

So, in the last week, I have heard the term “dual diagnosis” about a million times. I guess the dual diagnosis of Down syndrome and Vaters Association just wasn’t enough – her esophagus has been behaving much too well to get too much attention anymore.

Although, I’m not entirely sure of that either, as her Pediatrician suspects there may be a hernia on her fundo incision, and we have to do an upper GI to take a look at that. And she was not happy with Paige’s feet – her right foot turns in so much that it is badly malformed now. We have had very little success with arch supports and braces, but we will try again, and hope it doesn’t make her hips any worse.

I can’t say that I’m surprised that Paige was diagnosed as autistic, although I guess I wanted her to take one look at her and say, “Oh my goodness, NO WAY is she autistic.” Instead, she tried gently to tell me that, although some children with T21 have “autistic tendencies,” she would consider Paige to be genuinely autistic.

Like I’ve said to some people I’ve spoken to about this, leave it to Paige to do it up right if she’s gonna do it!

Really, we should have caught this long ago. When she was 3-4 years old, there were so many signs – and this is the age when it begins to appear for kids, especially those who have T21 as well. We spent the better part of our life going to see geneticists because everyone suspected there was “something more” going on with Paige.

But, test after test, family tree after family tree drawn on a paper, lol, we found only slight indications of what could be different.

At the time, Paige was very sick with her gallbladder, although it had not yet been diagnosed. So, many of the speculations took a back seat to getting her well and keeping her that way.

And, we decided to live our life instead of analyze it. Paige was, and still is, Paige. Our quest to find something genetic was more important for future generations than it was for us…unless something was found that we could fix, we really didn’t need to know. And we all know that genes are genes – there’s not much changing them.

Perhaps its better that we have just found out at 10 years old. Maybe it would have been too overwhelming for us 6 years ago. I remember thanking God for giving me Down syndrome instead of autism, because I “couldn’t handle” autism.

I guess He showed me!!!

And it’s kind of neat the way Down syndrome and autism sort of cancel each other out in some ways. Paige is still a very lovey, huggy little girl – probably a result of that extra chromosome. She has a sweet gentle personality, and has never had a melt down or a temper tantrum. Wherever that comes from, I’ll take it!

At any rate, we do not want to spend our lives analyzing her every move, and trying to attribute it to this or that – she is as she should be – wonderfully, gloriously made by God, just as He wanted her to be made.

I wish I could share the feeling of peace that I have whenever Paige is near me…I feel invincible, like nothing can hurt me or stop me or bother me. She has empowered me so much and I feel so lucky to have her.

I have met many, many wonderful people because of the little extra chromosome she has. I have been welcomed into a wonderful family that fully understands the joy of her. And, for a moment, I was a little sad that I might not be a part of this community as much anymore – after all, she is now different even from those so much like her.

But, I know that is silly – the bonds I have made will not change. The people who love her will not see her differently because she has another word on a medical file somewhere.

And…who knows…maybe we will meet even more people along the way whose paths are taking the same twists and turns we are.

It’s a glorious life.

For Patricia...

I'm sure many of you remember the video "Think of Me First As a Person" - a family's story about their son, brother and uncle Dwight who has Down syndrome. We were all so very touched by this beautiful story that many of us blogged about it.

My entry.

Well, Dwight's sister, Patricia, mom to George, who created the movie posted a comment on my blog. Since then, Patricia and I have kept in contact with one another - she has become a very wonderful friend!

Patricia is an amazing woman who bikes hundreds of miles a year, often in support of a very worthy cause. Its no wonder Dwight has been so lucky in his life - as this family is truly incredible.

Patricia has given me permission to share an article that she wrote about her bike riding shortly after her father's death.

Here is her inspiring story:

THE VIRGINIAN-PILOT

              Copyright (c) 1995, Landmark Communications, Inc.

DATE: Sunday, October 1, 1995                TAG: 9509270041
SECTION: REAL LIFE                PAGE: K2   EDITION: FINAL
SOURCE: BY PATRICIA CORE INGMIRE
                                      

PEDALING 100 MILES IS NO SWEAT

EIGHT YEARS AGO I signed up to bike 100 miles for the American Lung Association Colonial Virginia Bike Trek for the first time.

I had two reasons to do this: First, my husband told me I could never bike 100 miles. He said that he was in good enough shape to compete in a 100-mile bike trek but there was no way I could accomplish such a feat!

That was all I needed to hear. I would have to prove him wrong. My second reason for wanting to do the trek was I wanted to make a difference. I have always felt very strongly about the smoking issue and lung disease. I believe in the valuable work of the American Lung Association of Virginia and how they help people with lung disease. So it seemed only natural to help raise money for a cause I believed in.

My strong feelings about lung disease hit close to home. My dad, Dwight L. Core Sr., was a smoker. For years, I watched what cigarettes did to him. I would ask him to quit. I'd tell him how much I loved him and that I'd miss him when he was gone. Usually this would only make him angry. His reply was, he enjoyed smoking and didn't wish to give it up. It gave him pleasure.

He knew his health was deteriorating. We had a number of disagreements about his smoking. For a while I didn't go over to my parents' home. I didn't like the second-hand smoke, plus I didn't like seeing what continued smoking was doing to my dad's health.

My mom intervened and asked my dad not to smoke around me. He agreed. Three years ago my dad became very ill and was hospitalized. He never smoked again.

My dad was always one of the largest contributors to my bike treks. When he mailed me his check he would always write a note, telling how proud he was of his daughter and her accomplishments.

When I had raised over $25,000 and was at that time the largest fund-raiser in the state, my name was added to the National Wall of Recognition in New York. I was given a plaque. I gave it to my dad. He treasured the plaque and would show it off to people, like the man who brought him his oxygen and breathing supplies.

In fact, my dad gave the oxygen man one of my fund-raising letters. The man wrote a check for $100 to the ALAVA in honor of my bike trek.

The first year I did the trek, I averaged about 10 miles an hour for the two days. I was so slow my husband didn't ride with me. That night I was so sore I had to get a massage. The day after I finished I ached all over. Now I cover the 50 miles each day in a little over three hours.

Over the years, I've gained far more than I've given. I am in great shape physically. Now, I go on biking vacations. I've biked in Vermont and Florida. My level of self-confidence is off the charts. I know I can accomplish anything I want in life. I love the high I get from biking. I can be feeling sorry for myself, then I push myself to go for a bike ride. Afterward, I count my blessings. But the biggest blessing of all has been in the brave and caring people I've met.

The first seven years I biked in honor of my dad. This year I will bike in his memory. He died July 6.

My dad taught me so much about life. Fortunately, a week before he died, I was able to tell him my feelings from my heart, the kind of feelings that so often we just don't take the time to share.

I thanked him for being my Dad. told him how he taught me to be loving, sensitive and caring. He also taught me to be assertive and stand up for what I believe. My assertiveness has allowed me not to be shy about asking people to contribute to the ALAVA for my 100-mile bike trek. Counting this year, I have raised more than $39,000 in eight years. I hope to raise that total a great deal more in the next week.

The response over the years has been overwhelming. Many of the checks come from people who have lost someone they love to lung disease.

I have a special scroll with all the names of the people I'm riding for.

On Saturday, before I begin the 100-mile ride, I'll pack the scroll away in my bike bag. On the scroll will be dad's name along with Dorothea Reiner, Eleanore Burns, Anne and James Moore, Carl Heylek, Norena Cunningham and others. They'll all be with me in spirit on my journey.

My 100th Blog Entry

This is my 100th Blog Entry! I thought I would celebrate by sharing a very special project I am working on. Our friends Leonard and Carol, have invited our family to be a part of their incredible fund-raiser for our Children's Hospital.

We know so many children (including our own!) whose very lives have been saved by this hospital. As many of you probably already know, Paige was the kick-off baby for the telethon for CHEO when she was a year old.

Len and Carol have 7 children, and their goal was to raise $200 per family member for the hospital. Well...in just two short weeks, this project has skyrocketed, and it's looking like their goal will be doubled and doubled and doubled, many times over.

We have put decorated cannisters up at local businesses, and done some radio commercials, and some promotions within our schools, as well as scheduled some events in the next few weeks.

Won't you please visit Livee's Loonies to meet our very special Miss Princess Olivia, and her family, and see how wonderfully generous our community is.

Be sure and leave Miss Livee a "hello"

Kudos to Paige's School Board

I have to share this with my readers. A few years ago, I sat on Parent Council at my children's school. They go to a Catholic School in our area. I was very, very active in the school; and I enjoyed my time there.

However, we had a "bad apple" situation at the school with a member of our administration. It was a rough, trying time, as many of us had to step out of our comfort zones, and, in essence, become very "toughened" to nasty comments, intimidation games, etc.

It was really one of those times when I had to evaluate what I was doing and why I was doing it. I wanted to walk away; but I just kept thinking that I needed to set an example for my children. I HAD to show them that you have to do the right thing, even when it causes stress and even when it is uncomfortable.

Even two years later, I realize that the bad feelings that happened were not caused by me, or the people I fought this battle with, but rather, as a result of what happened. Still, the costs were great to us - we lost faith in people we believed in, we lost credibility as a Parent Council because of the mess, etc.

Now, I am much less active in the school. Dakotah goes to high school now, and I concentrate my efforts on Paige's needs specifically.

Still...there is an amazing staff and principal at her school now, and I am very happy with the fact that I have chosen that school for Paige.

Today - I went in to speak with the principal and another teacher about "Livee's Loonies" - and as I was speaking to the Principal, I noticed the poster announcing "Catholic Education Week" in our school board.

Our board operates 50 schools in 8 counties, and employs 850 teachers and 450 support staff...and supports 15,000 students. That's a lot of school, in a lot of area (12,165 sq. kms!)

The theme of Catholic Education Week this year is "We are all created in God's Image."

Imagine how very pleased I was to see the 4 little children on the poster - all cute, happy, smiling faces - and the little boy in the bottom left hand corner, with freckles sprinkled across his nose, a big smile on his face - well, he too, was created in God's image - just like Paige - wonderfully and fearfully made in His image - with a little dusting of Down sydnrome thrown in! :)

I'm so proud of the Board and their decision to put this little boy's adorable face on that poster as a reminder to all 15,000 students, and all 1300 staff who will see it on a daily basis of how wonderful diversity is.

A Beautiful Song...

I have always loved this song - my friend, Donna, who is an amazing singer, has sung this song at many weddings I've attended. I haven't heard it for years, but it has been playing in my head for a few days now.

Sometimes, There's Nothing But Awe

As many of you may know, the reason that we found out that Paige had Down syndrome prenatally is because we could not see her stomach or kidneys on numerous ultrasounds, and we were told she most likely had Trisomy 13 or 18 - trisomies that are almost always fatal.

The test for T21-Down syndrome - is just kind of thrown in with the amnio testing that was done. I've always believed that is one of the reasons we so easily accepted T21, and didn't have any mourning period like many families do. We were just so glad that she had a condition that was compatible with life.

And still...we had to pray. With no stomach or kidneys, she would not survive at birth. We hoped that she would live long enough to retrieve organs to help another baby live. We kept this information to ourselves, as we wanted to celebrate every moment that she was with us, before and after she was born.

Even if she were to be taken from us, we would not let that rob us of the joy we had in hoping for her, wanting her, waiting for her. We were determined to cherish every single moment of her.

Joyfully, gloriously, amazingly, she arrived screaming and alive. A true miracle had arrived to our family. Hours later, she would crash, and we would learn that she had esophageal atresia, and a tracheal fistula that was causing her to basically drown and dehydrate at the same time.

Again, miracle after miracle came to us, and she survived. She is a healthy, happy, amazing 10-year-old little girl now.

It may be hard to understand, but had she not lived, she would have still been our miracle. She was so loved before she was even here to cherish. And had she been born alive and been able to donate an organ, she would have been someone else's miracle too.

No one should ever, ever think of her as 'less than' anything.

My child has empowered me in great ways; I am a different, better person because of her. I understand gratitude in a way that I never would have been able to in any other way.

And, so, when I saw this video, my heart went right back to those days. I admire Eliot's parents so, so much, and can only hope that I would have been half as brave, and half as aware of the great miracle they witnessed.

99 days - 99 balloons - could YOU change the world in that short of time?

Eliot's webpage.

It Took Too Many Years...

but, I've finally figured out what I want to be when I grow up.

I want to be a genie. Actually, I wouldn't mind just looking like a genie for a few days.

Although voted "Most Business Minded" and "Most Likely To Suceed" (as well as "Most Sensitive") in my high school graduating class, my concept of success has greatly changed over the past decade or so.

I'll be honest here. I don't particulary want to work. I don't really want a job. I don't want to be a career person, moving up the corporate ladder - although at one time in my life, that was all I wanted. I wouldn't even care if I was making money, provided I actually had enough money not to care.

Instead of a working for a living, I'm very ready to move into the "life's work" role. I want time - time to be able to make a REAL difference in the world, and in the lives of those around me.

In the last few days, I have been fortunate enough to be asked to be a part of a very special project called "Livee's Loonies." I have had so much fun helping, and have felt renewed in spirit as we've started to create this project.

Our local newspaper featured an article yesterday about inclusion in the community and a huge initiative that will be going into schools, and early learning centers to help teach this very important subject.

They are looking for volunteers to train to do this work - I want the time and financial freedom to sign up as a volunteer for this project.

I am a big believer that all of us have a life story to tell - and I want to touch the lives of those who's life stories have touched me.

I've said it a million times - I am being called to do something profound. And that voice just keeps getting louder and louder and louder.

He is Risen!!!

Alleluia! The most glorious day of the year!! A day that brings new hope, new life, and remembrance to our faith. I hope everyone has a very Happy Easter!


Our family had the most fun this morning! We have friends who have seven children - the youngest, Princess Olivia, has T21. Olivia has had a rough couple of years, with lots of bouts of pneumonia, and was recently hospitalized again.

This family is one of the nicest, sweetest families we've ever known. All of the kids are so polite and respectful, and fun to be around.

We wanted to do something for them for Easter that would let them know we were thinking of them, and that we had also been there -- Paige has spent a couple of Easters in the hospital too, and its rough - you always feel like you are torn between home and hospital and don't have enough time or energy to do both.

So, this morning at 5 a.m., we snuck out to their house, and hid 140 plastic eggs filled with candy around the outside of their house. We wanted to do it anonymously, but the Mommy in me said, "if I didn't know who it came from, my kids wouldn't be allowed to eat it!"

We left 7 hand painted chocolate eggs with names of all the kids on their front porch, along with a note to Mom and Dad from us.

We were so nervous we were going to get caught - it was still dark outside, and we were wandering all over their property, lol. I was praying that Leonard didn't own a b.b. gun, because if he did, my butt on my hands and knees on his front porch would have been the target!

We had such fun!!! And after, we came back, all got back into bed, and woke up knowing they would have a great surprise when they woke up.

I love this baby!!!

This is my nephew, Craig's son, Cameron, a.k.a. "Baby Will." Isn't this the cutest little baby you've ever seen?!?!

What a wonderful surprise...

Paige came home from school today with a big envelope full of notes and pictures. I often send in crafts for her class to do - at Christmas, each child in her class had a Christmas ornament or gift to take home for their Mom and Dad, and this week, they did Easter crafts.

The envelope contained thank-you's from all of the kids in her class, and I want to share them. Most of them have drawings on them, but many are in pencil, and have the kids' last names on them, so I'm not going to scan in.

Here they are, misspellings and all!

(The kids call either call me by my last name - "Mrs. L...." , or many of them still call me "Mrs. P" - something they adopted in kindergarten, because, well, I belong to Paige, lol.

"Mrs. L, Thank you for the crafts that you bought for us. There wonderful and my parents love them. I enjoy spending time with Paige. She is so nice and smart. Paige is wonderful!"
--Sincerely, Taylor

"Dear Mrs. P, Thank you for all the Easter and Christmas crafts! I appreciate it! I like to make crafts with Paige. Paige is a very nice girl, and you are a very nice girl too. Have a magical Easter." -- Sincerely, Shiara

"Dear Mrs. L - Thank you for letting us make crafts and for buying them. It was really king of you. I love spending time with Paige when I cook with her. May God bless you with all the love you give to us." - Sincerely, Pamela (Note, on this note, there is a little "tally" in the top corner, that says, "God loves you" and it has 6 little stroke marks, lol...)

"Dear Mrs. L - Thank you for buying all of those beautiful crafts. My mom and dad loved them. I hope they like the Easter craft. I really enjoy Paige. She rocks." -- Sincerely Andrew

"Dear Mrs. P - Thank you so much for all the crafts you have brought. I love makeing them with Paige. I guarantee you that my parents are going to love this." -- from Allison

"Dear Mrs. L - Thank you very much for the Easter crafts. I think it was a nice thing that you did. I love Paige. Right now, almost everybody does." Thank you -- Keananne

"Mrs. L - Thank you for the crafts. I injoy baking whith Paige. -- Mandee (note, this picture has a bright sun in each corner on the top, lol)

"Mrs. L - May God Bless you with His love. My mom and dad loved the Easter craft and even saved the Christmas one. I have fun with Paige. " -- Sincerely, Caitlin

"Mrs. P - Thank you for the crafts. Paige is kind and very intelligent. I like to play with her because she is very playful." - Venessa

"Mrs L - Thank you for the Easter and Christmas crafts. I have fun making the crafts with Paige. My mom and dad will like it too." - Samuel (note: this picture has a drawing of Paige walking our dog -- she is about 2" big in the picture, and Kirby is about 8" big, lol!)

"Mrs. L - Thank you for buy craft. My parents love the craft I made. I love makeing the crafts. I loved makeing the Christmas craft. I loved makeing the Easter Craft. I love spending time with Paige makeing the Christmas craft and Easter craft. " - sincerely Tristan

"Mrs. L - Thank you for the crafts. Mtirletty. (note, I have no idea what this means!) I like spending time with Paige because she is so smart. She is one of the sartest kids in our classs." -- from Sheldon

"Mrs. L - Thank you for the crafts. I twas fun making them. The arts and crafts." - Richelle

"Mrs. L - Thank you for the crafts. at Christmas and Easter. Thank you very much for letting me spend time with Paige." - from Jaccob

"Mrs L - Thank you so much for the Easter and Christmas crafts. I'm sure that my parents will love my art. Thanks" - William (Note: William has drawn himself nailed to a cross, with Paige looking on, lol)

~~~~~~~~~~~~~~~~~

Isn't that sweet, funny, and very touching?!?!

How Fun!

I had my blog critiqued. Billy Mac must be a busy boy, because he sure critiques a lot of blogs!

Here's what he had to say about mine:

Right back in the swing of things with the mom blogs...picking up where I left off, we are treated to Betsy's blog about her life and times with her family and 2 daughters. This is a very well written and interesting blog with some good posts. There is an eye opening (no pun intended) post about sleepwalking and...uh...sleep driving, and this touching post to her dad on the 9th anniversary of his death. SO why not stop over and say hello to Betsy...especially since she has named her own holiday back in March as National "visit a blog" Day! Nice job and keep the blog rolling.

Its National "Visit-A-Blog" Day!!!

Well, not really, but I'm declaring it!!



I've added a whole bunch of new blogs in my links section - go and visit one of my friends, and tell 'em I sent you - you're sure to find something interesting to read!

Leave me a note and tell me who's blog you visited.

And remember - no matter where you are, what you are doing, or who you are talking to, most likely someone, somewhere is going to blog about it! :)

Happy Birthday!

Paige and her friend, Emma, celebrated their birthdays last week. They are 4 years and one day apart. So, they partied together! They took their classmates from their Living and Learning Class to Dairy Queen for lunch, and then they went Bowling, and then back to school for cake.

See how much fun was had by all!


Emma's Mom, Camille, made the cake, but Emma made sure to supervise. She tasted it just to make sure!

Macky, Damien and Brooke waiting patiently for lunch to arrive.

Go, Damien, Go!
I scored! I scored!

Now its Brooke's turn! Throw the ball!

It's gone!

I can't even look! Did I win?!?!

The Birthday Girls

Emma shoots!

She SCORES!!!

Not everyone can look this cute in bowling shoes!

All I can do is hope...

Or maybe one tiny prayer...

The Masterpiece! The Hickory Dickory Dock Clock -
set at 10 and 6, for Paige and Emma!

Emma, you blow out the candles while I chew on my thumb!

Dear Dad,

Today marks the 9th Anniversary of your death. Last year, I wrote this in your memory.

This week is a very sentimental week for me. Ten years ago today, I was heading to the hospital to have Paige, not knowing if she would survive or not. Nine years ago today, I was preparing to come and see you one last time, to attend your funeral.

So, this week holds a lot of emotions, as you can imagine. But, it hasn't been a sad week for me.

It has been a glorious week, Dad. Because this year, I knew that I would mark the anniversary of your death by telling you that I am honoring your memory in the way you would want me to. My thoughts of you this week have been happy ones - hundreds of good memories of your life, and how very lucky I was to have you for my dad.

I'm living a good life, you know? I am so incredibly blessed with such a good family, and every day gives me a new appreciation for having this life to live. I have a wonderful obligation to live joyously, and I am doing really well at it. You would be proud of me.

I don't take anything for granted, and I do my best to embrace my blessings.

Its been a good year - the kids have done well, everyone has been healthy and tomorrow little "Paigey" will be ten big years old! You would just love her, Dad -- she has such a funny belly laugh, and you would love her hugs and snuggles. She has long, long blonde hair that looks so cute in braids; I remember how you loved my long hair when I was her age.

She has your crystal blue eyes, only with an extra little starburst in them -- I'm sure its your soul sparkling when I look into them.

She walks "the loop" -- round and round our house, just like you would go when you were sick -- round and round in the wheelchair, to get some "exercise". When she does that, we all say she is "channeling Grandpa."

And Dakotah...oh my...you would be shocked. She went from 11 to 17 in a year's time! She is tall and beautiful, and such a good kid. She has a big mop of curly curly hair that she thinks she should color every three weeks. She is a good student, and adores Paige. She has a lot of interests, and is active and healthy. She is really good with Paige too; they are the best of friends.

This year we got a new puppy! You would love him - he's your kind of dog - a big, goofy, lovable dog who likes to velcro himself to your feet when you are sitting down. His name is Kirby and he is part Newfie/part Lab.

Its a rainy day here, and his Newfie instincts have kicked in, because this dog can find a mud puddle from a mile away!

And your great-grandchild count is now up to five - with two little boys, Cameron and Owen, being born this year. Craig has a son, dad! Imagine that! He is so, so cute, and in the tradition that you had of giving Craig the name "Mike" when his mom was pregnant with him, Dakotah dubbed Cameron as "Baby Will" before he was born, and well...Baby Will it is!!!

Thank you for so many things, Dad...so much of who I am is because of who you were. I promise to live a good life for you...

With all my heart,

Betsy

Today is World Down Syndrome Day!

Symbolic of Trisomy 21, today, 3/21 is World Down Syndrome Day! The theme for this year's WDSD is "Celebrating Diversity," so it was very appropriate for us that Paige's school celebrated the First Day of Spring with "rainbow day" - each class wore a color of the rainbow, and they had a little assembly at school to celebrate the coming of Spring and the diversity of the students at the school.

There are two little girls with Down syndrome in Paige's school - Paige, and Emma - and this was read for the girls at the assembly:

oday is World Down Syndrome Day - the date, 3/21, is symbolic of the extra 21st chromosome that children with Down syndrome are born with.

Please take a moment to remember two very special young ladies who have Down
syndrome at St. *** - Paige and Emma.

God calls us to celebrate one another, and like all of you, Paige and Emma are wonderfully made in His image.

God wants us to recognize that its o.k. to be a little different sometimes. He is happy when we are kind and patient with people who sometimes need a little extra time to learn new things.

All of us are different from one another, and that's what makes us such a beautiful rainbow of souls like we see here in our school today.

As we celebrate this first day of Spring, let us be thankful to God for the
gift of people with Down syndrome.

~~~~~~~~~~~~~~~

Also a a cute story to share...this morning, I say to Dakotah - "Hey, today is World Down Syndrome Day...so if you know someone with Down syndrome, stop and celebrate them." Her eyes light up, and she goes, "Yeah, there's that woman that walks by our house every morning."

LOL! I say, "Hmmmm....you couldn't think of anyone else by chance, could you?"

She goes, "Oh, yeah, sorry Paige! I forgot you had Down syndrome!"

Too funny!

Not a creature was stirring...

I come from a long line of sleep talkers and sleep walkers. When I was in my early 20's or so, I thought I had this dream that I had driven to the house where I grew up, and had, for some reason, gotten out of my car and walked around.

At the time, I owned a restaurant with my sister, and that morning, a man that used to live near us stopped by and said, "What in the world were you doing in the middle of the road at 3:00 this morning?"

Apparently, in my sleep, I had gotten fully dressed, and driven about 4 miles, where I stood in the middle of the 4-corners of the street that met in front of our house, spread my arms out, and twirled and twirled.

I had woken my neighbors dogs up, and he came out to see if I was o.k. When he spoke to me, I simply got back in my car and went back home.

When I woke up in the morning, I was back in my pj's, but my clothes were in a heap beside my bed.

Had I done this before or have I done it since, I'm not sure.

I can't tell you how much I talk in my sleep, as it would take something equivalent to a sonic boom and an atomic bomb going off right near his head to ever wake Wayne up in the middle of the night. I do know that there are a few times I've woken myself up and literally heard myself say something silly like, "I have to put the pie back on the shelf," and have no idea why I said it.

My sister's son, Colin, was a big sleep walker when he was younger, and everyone got very used to just putting him back to bed. Doors had to be locked from the outside of his room because he would just wander away. But, he was very functional, like I am, in my sleep.

I can wake at the sound of a pin dropping three rooms away. My body can rush adrenaline so fast that by the time my feet hit the floor, I'm alert, and ready to spring into action.

My mother is a sleep talker too, and it was a fantastic tool to use as a teenager. Just wait it out...once she drifts off to sleep, she will agree to anything!

So, its no surprise that our house is seldom quiet. Dakotah blabbers all night long. She is very lucid, and I can hear her having actual conversations with her friends in her sleep. She is also easily roused and will talk with me for 10 or 15 minutes and not remember a thing the next morning. Its very strange to hear her have different emotions that must match what she is dreaming about.

And strangely enough, because she isn't even a daytime talker, lol, Paige is a sleep talker too. Often, I will hear her on the monitor, saying her favorite words "Dee-Dog" "Bud-dah" "Nee-nah" "Doo-wah" "Toe-by-a" "Ninga ning" "Nay Nay" "Mem"

I don't know what most of these words mean in her sleep any more than I know what they mean in her waking times, but its so sweet and funny to hear her jabbering away -- surely the words have great meaning to her.

And they have great meaning to me. I always joke that Paige is 51% me, and 50% daddy -- that's what makes her so darn cute and lovable. So its pretty funny that she would be so genetically wired to pick up this strange family habit from us, so ingrained in her little being that she is doing with it without even really being able to do it.

But, the absolute, most amazing part that makes my heart sing in the quiet of the night in my house, that makes me smile a huge smile and roll over and hug my pillow and say, "Thank you" to God just one more time is this...

Sometimes, Paige will be sleeping, I will her the rhythmic sound of her breathing; all is quiet in our house, and our world is calm and peaceful and then...

Paige will burst out laughing so hard that I'm sure there must be an angel tickling her belly, over and over again. And then, as suddenly as it started, I will hear the quiet breathing again.

There is nothing, nothing...more wonderful than knowing your child is so happy and loved in her world that her dreams are filled with great laughter.

I've Been Tagged

Nic has tagged me! This is a tough one! I have to list my 5 favorite things about feminism.

Here goes in no particular order.

1) I can use my maiden name and married name interchangeably and it doesn't matter.
2) Women can be tradesmen (or tradeswomen!!) - I think I would have liked to be a carpenter.
3) I would never think twice about accepting a job that pays more than my husband's does if it were a job I really wanted.
4) I don't feel guilty when Wayne does housework.Nor do I feel guilty about not laying out his clothes, fixing him breakfast, making his lunch, or any of the other bazillion things that I don't do that make my mother recoil in horror when she visits,lol.
5) Women have a voice now - our opinions are listened to and respected - we can talk politics, religion, etc. with the best of them.

That was tough! In many ways, we are still a pretty traditional household - certainly more traditional that I would have ever guessed it would be when I was 21!

What I Love About Down syndrome

Ok, so maybe not all of these have anything to do with Down syndrome, but this is just a light-hearted post about celebrating that little extra...

The Top Ten Things I Love About Paige Having Down Syndrome

10) That "laugh with wild abandonment" giggle.
9) Flexibility, baby.
8) Chromosomes that look like caterpillars (Thanks, Becky!)
7) We celebrate milestones, not race through them
6) Those beautiful, soulful, almond-shaped eyes
5) Her tiny little hands
4) Those cute little toes that we saw on the ultrasound still look the same, ten years later.
3) The way she screams "Dee-Dog" with excitement every day when she gets home from school and sees Kirby.
2) Low muscle tone that lets her sink right into me when she is snuggling - I loved it when she was a tiny baby, and love it even more now.
1)Brushfield spots


So....what's your favorite part of Down syndrome?

More Than Words

Its funny how things go in life - how so many of the things that happen in our lives go full circle and how sometimes it takes us so very long to realize it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Saturday, I was waiting to get my haircut, and there was a man there with his little girl. She was a sweet little thing, very tiny, and very well behaved. I could tell it was his only child, because I so recognized myself in him as he spoke to her.

He was just conversational with her - he was playing word games to keep her entertained - "What comes after "F", What comes before "P", "What is after Monday?" "What color are your shoes?" "What does a dog say?" "Can you count in French? English? Spanish?"

And she was answering those questions left and right -- faster than I could, because I had to back up a few letters of the alphabet to figure out "what comes before."

Her name was Julia and she spelled it when he asked her to.

She was all of 22 months old, and everyone was very impressed by how very smart she was.

Dakotah was like that as a baby too, and I doted on her like this little girl's Daddy did. Although she didn't walk until she was 14 months old, Dakotah literally started speaking in full sentences when she started talking. We have a video of her first birthday where she is opening gifts, saying, "Oh, wow! I like that!" She potty-trained herself at 18 months, simply announcing that she would no longer be needing diapers.

By three, she was reading and when she started writing, she could write either the "right" way or upside-down and backwards - mirror image - with the same speed.

She was curious and very precocious. My mother-in-law said that she had never seen a mother talk so much to her child as I did. As she should have been, she was my world.

Dakotah would talk about ANYTHING -- she would talk to the silverware as she set the table, she would sing to herself as she peed. She could take any two songs, and sing the words to one, with the music of the other - try to do that -- sing "Wheels On The Bus" to the tune of "Twinkle, Twinkle, Little Star." Its not all that easy!

I smiled at little Julia and remembered those special days I had with my first child. But I wanted to tell the dad that I was now 14 years in - and, well, once they start talking, they never really stop!

I still hear from her teachers, from other adults, etc, that she is very shy and very polite, and very quiet. That's very hard to believe. We still have that bond we formed so many years ago - and Dakotah still talks to me 24/7.

She is now 13.5 and jabbers at me from the moment her eyes open until they close at night. And she can still talk to the silverware as she is setting the table, lol. The other morning, I had to drive her about a half hour away to a basketball tournament - I swear,she went from topic to topic to topic without ever taking a breath.

If its in her head, and I'm near, its out of her mouth. Friends tell me I'm very lucky to have a teenager who is so open to me, but I have to admit, its sometimes very exhausting having a teenager who has an opinion on every single thing - who feels as if she is grown up enough to be a part of every conversation between Wayne and I. Sometimes, I am so talked out...yet I do know and understand that I have to keep the lines of communication open in the coming years, and I do my best to allow her to get out all she has to say.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Reflecting on little Julia, I was surprised that I compared her to Dakotah and not Paige. Gone forever are those wistful days that I would look at another little one for a moment and just wish - just for a second - that Paige would hit the milestone I was witnessing in someone else's child. I couldn't even muster up a "what if" scenario in my head for Paige.

Because, as that circle of life envelopes us, we learn that we are given what we need in this life, and if we listen very carefully, what we are given is usually very much what we want as well.

God, in His infinite wisdom, gave me Dakotah - my challenging little prodigy that will either be something spectacular in her life, or a very, very good used car salesman, lol. He stretched the limits of my patience with her curiosity, and her chattiness, and her constant bargaining with me. He gave me a daughter who I can see becoming one of my very best friends as she enters adulthood.

And then...He gave me Paige. A quiet little girl who is content to observe. Paige's world must be brought to her, and patience is required to show her all that there is in this great big world for her.

He gave me a little girl who has basically lost the little speech she had as a three-year old. And He forced me to learn to communicate in a much different way. Paige's soul speaks to me directly - I do not need words from her to know how she is feeling or what she is thinking - its as if when the cord was cut, only our physical bodies became separated - we are, in a sense, "conjoined souls."

I don't mourn what Paige isn't any more than I mourn what Dakotah isn't - they are both just as they are intended to be.

In her own way, Paige fills my days with communication as well. I miss her presence just as I miss Dakotah's. I chatter away to Paige as I did to Dakotah when she was younger.

I always have to pause when I'm asked what methods we use to communicate with Paige - I have to remind myself that some people see her as non-verbal, therefore, non-communicative. Although we work hard to help Paige speak, I don't even really miss speech with her - I forget that she doesn't talk with words, as her soul is so apparent to me.

~~~~~~~~~~~~~~~~~~~~~

Saying I love you
Is not the words I want to hear from you
Its not that I want you
Not to say, but if you only knew
How easy it would be to show me how you feel
More than words is all you have to do to make it real
Then you wouldn't have to say that you love me
Cos Id already know

What would you do if my heart was torn in two
More than words to show you feel
That your love for me is real
What would you say if I took those words away
Then you couldn't make things new
Just by saying I love you

More than words

Now Ive tried to talk to you and make you understand
All you have to do is close your eyes
And just reach out your hands and touch me
Hold me close don't ever let me go
More than words is all I ever needed you to show
Then you wouldn't have to say that you love me
Cos Id already know

What would you do if my heart was torn in two
More than words to show you feel
That your love for me is real
What would you say if I took those words away
Then you couldn't make things new
Just by saying I love you

More than words

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"More Than Words" was the song Wayne and I danced to at our wedding. We loved this song so much, and talked about the meaning of it - how some people said I love you all the time, but never showed it. In our vows, we promised to show each other how much we loved one another. We promised that it would never become "just words," and we talked about that line, "What would you say if I took those words away..."

We were committed to remembering to show our love for one another, not just profess it. Across a room from one another, we always wanted the other to know how much they were loved.

When we were dancing, when the line, "Hold me close, don't e-vah let me go," came on, Wayne sang it in my ear, and I could have floated away on a cloud, I was so in love.

"More than Words" -- our motto as we began our lives together as husband and wife.

The song hit the Billboard Top 100 for the first time on March 23, 1991. Six years later to the day, our daughter would be born who would once again remind us of that promise we made to one another.

Apples for Bella

Every day, I am reminded of how blessed my life is. Every day, I am touched by another reason to live joyously.

Bella celebrated her 6th birthday last weekend. Although I have only met Bella a handful of times, I have heard wonderful stories about Bella from my friend, Camille.

But nothing could prepare me for actually meeting her for the first time. Bella was breath-taking - a delicate, tiny little girl who is so pretty that it brings tears to your eyes.

Her little sister, Maya, looks very much like Bella and has that same perfect, satiny skin, and dark little ponytails, and a sweet little voice.

Bella has a progressive, degenerative disease that cannot be cured. She has lost many abilities of a typical 6 year old child.

But, she is far from a typical 6-year old child anyway. As soon as you see Bella, you feel her power - her spirit is so alive, and so great that you are overwhelmed by it, humbled by it. Its as if a great sense of peace and deep, deep happiness washes over your body, and you just want to bottle up that feeling and keep it forever.

The moment I first saw her, it was like my soul had known her forever. I wanted to laugh out loud with pure joy, and lift her in the air, and tell her over and over again, "I know! I know!" She spoke to me as clearly as if she had uttered profound words to me.

Melissa, Bella's mom, is an amazing young woman, who has shown great strength that many of us will never have to muster up in our lifetimes. She "gets it." Although Bella's prognosis is not good, she has chosen to celebrate her child's life, to enjoy her, and cherish her and love her.

Bella went sliding for her birthday. And she goes swimming and to the movies. Her family threw a party for her to celebrate her big day, and they had family and friends who celebrated Bella with them.

You see, while many people who are facing what Melissa is facing would be very angry and very upset, and feeling very sorry for themselves because it is not fair that Bella is so ill, Melissa understands that she has two choices.

She can live joyfully with Bella, capturing her memories and beauty and looking at her amazing eyes and glorious smile. She can celebrate every new day, and fill it with all the wonder of a young family.

Or, she can worry and mourn about what is to come. And all that will do is to take away the glory of these days - it will do nothing to stop those sad days from coming.

Melissa, like all mothers, has a right to celebrate her daughter - to talk about her pregnancy with her, to remember her first smile, and her first words, and her first steps. She has a right to reminisce and to celebrate Bella's days.

Bella has bestowed a great mission upon Melissa - to remember her sweetness, and to share the story of Bella for many years to come. It is Melissa's single greatest job right now - to keep that spirit in the hearts of her family forever.

And...Melissa has a right to be sad and overwhelmed, and frustrated. She has a right to have bad days.

Our lives are not always black and white; life is not always good or bad. Sometimes we learn our greatest lessons from the saddest things, and sometimes those sad things teach us another very vital part of being human - the immense joy that is on the other end of that sadness scale.

Bella has changed Melissa forever, and you can see that when you look at her. She has a rich, deep soul that does not need to be explained with words. She loves her child unconditionally, and the power of that is absolutely amazing to witness.

I am so thankful for Bella. I will never be the same.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Last night, Melissa told me a story of Bella when she was two years old. She came up to Melissa, and reached into her pocket and cupped her hands...reaching out to Melissa, she said, "Look, Mommy...an apple for you." Melissa took the pretend apple, and said, "Oh,thank you Bella, but where is your apple?" And reaching into her pocket, Bella pulled out another apple, and said, "here it is, Mommy."

And together, they shared the sweetest apples anyone had ever tasted.

Today, many times I thought of those magic apples, and how happy they made Bella and her Mom.

I think I shall carry one of Bella's apples with me every day...and whenever I need it, I'll reach in my pocket and find the most glorious, shiny red apple anyone has ever seen.

Granna Richard!

Oh, how happy I was to log onto my blog and find your comment! Your family's video has touched me so deeply, and so beautifully. It really is a "must see" film - your family's love for Dwight was so evident throughout the entire film, and we are so blessed that your son retrieved this film and finished it for the world to see.

I would love the opportunity to e-mail you, but cannot contact you through your post on my blog. My e-mail address is BetsyBiskt@hotmail.com

Please tell Dwight to keep coloring! There is something so magical about coloring just for the pure enjoyment of it. My children and I spend a lot of time coloring, even though one of them is already a teenager...it gives us great family time together.

I have to say that I'm somewhat glad that my daughter Paige finally got through her phase of loving the black crayon the best though -- a couple of years ago, we had black Christmas trees, black Valentine's, black shamrocks, and black Easter eggs!

Even before I had children, I always loved to color, and have always owned a box of Crayola crayons that are "off limits" to everyone else -- tucked away just for me to use when I'm watching tv late at night or wanting to make a special card for one of my kids.

I smiled a big smile when I saw what Dwight was coloring in the film, as one of my very favorite things to color on is graph paper -- making colorful patterns and fun shapes.

Thank you so much for sharing your family with us!

Yesterday was my birthday!

We had a great family day yesterday. We went shopping, and spent a lot of time in my favorite store - the book store! Everyone came home with a fun new book to read.

Then we went to dinner at a very busy restaurant. I have to say, even though its not always evident within the confines of our own home, I have very well-behaved children in public. Paige chose what she wanted to eat from the pictures on her placemat, and sat so patiently waiting for her food to arrive. Although actual words are still far away for her, she is quite a babbler, and carried on a great conversation with all of us as we waited. She is using a combination of Sign and gestures, and voice intonations that is really rather complex.

Gone are the days when I have to feed her, or even tease her to eat. She does quite well all by herself. And although I'm not crazy enough to leave home without a "just in case" change of clothes, I realize my days of diaper bags and trying to find change rooms are gone forever.

And except for our daily teenage meltdown about something trivial to me, but huge to Dakotah (hair not looking right, "the" shirt of the day in the laundry, etc.), I think Dakotah had a good day with us as well.

I was so happy to sit for a while last night and read blogs -- something I always do before I go to bed at night. I have such a strong connection with so many people who share the gift of a little extra chromosome in their lives. My "imaginary" friends in blogland know me more than many of the people I interact with every day.

Its a good life.

Think of Me First As a Person

" Think of me first as a person who hurts and loves and feels joy,”
--Dwight Core Sr.

A home movie about a boy with Down syndrome lingered for years in a cardboard box. But, lately, the film about Dwight Core Jr., "Think of Me First As a Person," has won many hearts and an honored place in the Library of Congress.

Read the story of Dwight Core, Jr. & and watch the amazing video created by his father nearly 50 years ago.

Dwight Core, Jr. "D" was born with Down syndrome 48 years ago, and like many children with Down syndrome at that time, was institutionalized in a special "training school" when he reached school age.

I'm so thankful this film was made, because we have such preconceived notions of people with Down syndrome 50 years ago. We know that families were told to institutionalize their children, and many doctors recommended telling people that this child had died, and having no contact whatsoever with them.

In my area, institutions have closed within the last 8-10 years that have housed people with Down syndrome who have never lived any other way -- whose parents signed off all rights to them, and have long since died. Many of these people have names that are different than their birth names, as their parents legally changed their names when they sent them away, thus even if family members remember or know that their relative with Down syndrome is still alive, in many cases its virtually impossible to find them.

I'm so glad we are able to see this account in a real light -- Dwight was not a child that was thrown away by his family, and not a child that was unloved by any means. His older sisters loved him very much, and were devastated when he was sent away.

His father shows himself to be a man who loved his son very much, and who saw what many people of that time did not - a beautiful young man he was proud to call his son. I think they did only what they knew to do at the time, and made a heart-wrenching choice that they thought was in his best interest.

Thankfully, as Maya Angelou says, "when you know better, you do better," and we no longer send our children with T21 away from their families.

We have learned so very much about people with T21. But this family knew those lessons as well. D's sisters adore him, then and now, and cherish him as he is. They see his beautiful soul.

We've made many advancements in the world of T21; but as we've taken two steps forward, science has given so many the opportunity to take one step backward - by suggesting that we try to eradicate people like Dwight simply because they have Down syndrome.

We still have so very much to learn about love, and acceptance, and true joy.

As I watched this movie, I fought back tears many times, especially when his sister spoke with such love about him, and how he said good-bye to their mom.

But, the overwhelming thing I felt in watching Dwight, both young and as he has gotten older is this...

Although I don't wish these wonderful days of childhood away, I hope and pray that the good Lord blesses Paige and me with the gift of longevity, because I cannot wait until she is grown, and I am old, and we walk down the street, hand in hand, humming a song only the two of us know.

I can't wait until we sit on our front porch together and watch the world go by. I hope with all my heart that our transition from mother and child to best friends happens as beautifully as I anticipate it will, and that I spend many of my final, most lovely days in the glorious company of my children.

Again, its all perspective...

I often write about how life is very much about perspective, how its really all about the way you deal with the good and bad things that come your way, and, sometimes, more importantly, the ability to see which things are good and which are bad.

So many of my "blogger friends" have been writing about joy lately -- choosing to live a joy-filled life and embracing this thing we call living. No one's life is perfect; but cherishing the lives we are given is such an integral part of our happiness. Life has so very many lessons if we will only stop and listen and look for them.

Today, I spent some time reading a blog of a Mom I don't know. She has two children, a 4-year-old son, and a 6-month-old daughter, who has Down syndrome.

This Mom was not prenatally diagnosed, and was quite surprised to learn her daughter had T21 at birth. Like many people, she had a 'this couldn't happen to me' feeling, and was sent reeling when she learned the news about her daughter.

Her posts over the last 6 months have been rather melancholy. I suspect that she has a degree of PPD as well, as she often writes about how hard it is to leave her house, but how she does feel better when she forces herself out into the world.

She is early on this journey into life with a child with T21. And she is still very skeptical at best. She isn't ready for the "choose joy" philosophy that so many of my friends and I spout on a daily basis. She writes that she doesn't want to meet other people with DS right now, and doesn't want to hear any "sappy stories" about any person with T21 that has done something wonderful.

In one of her posts, she says she doesn't want to ever hear again that her daughter might be a grocery bagger when she grows up. She doesn't want to "look forward" to that or particularly celebrate it if it happens.

It doesn't comfort her to know that people with T21 usually achieve some level of independence, and often hold a job, have many hobbies, friends and family.

What really struck me, though, is that there are no posts mourning her son, who may decide on a very "menial" career as well.

Throughout my day, I was conscious of people who have chosen jobs over careers -- who are really the backbone of our society. There's the manager of the Tim Horton's where I bought coffee this morning, and the people who served me there; a very nice man pumped gas for me today in the subzero freezing cold; at the grocery store, there was a man who was re-stocking the shelves with nice fresh bread for my family; my recycling and garbage was picked up at the corner this morning; if an appliance of mine breaks, a phone call is all it will take to fix it.

All of these are very respectable jobs, but perhaps not ones that this Mom would "dream" of for her son. Yet, if he chose one of them, I would think she would embrace the total package of her grown son...if he were a responsible, good, happy man, I would assume she would think him successful regardless of his career.

And...there are those who chose some not so wonderful careers. A mother who sat on Parent Council with me a couple of years ago at our Catholic School has recently gotten herself a set of fine and dandy new boobies, and is putting them to good use in a very seedy Montreal strip joint, dancing naked, taking men to champagne rooms for who knows what, etc. She has three young children at home, including a 10-year-old daughter.

I would assume she is not currently in a career her own Momma hoped she would be in.

So, apparently, having an extra 21st chromosome isn't the only defining factor in having a job like bagging groceries or stocking shelves.

So, why are we so obsessed with worry about what may or may not come in 10 or 20 years? Why is this Mom spending days in her house, fighting back tears, trying to get through each day, yet constantly thinking about the future for her daughter, and seeing nothing but bleak when she looks ahead.

I once met a man who had a brother with Down syndrome. His parents had always told him he would not be responsible for caring for his brother if anything happened to them. They put all the necessary things in place to make sure he wasn't "burdened" by his older brother when his parents died.

He said to me, "What they didn't think about is that it is not my burden -- it is my great blessing to have my brother in my life."

He was married, with two young children at home. Not only did his adult brother live with him, but his brother's two best buddies, who also had Down syndrome. And they all lived a happy, fulfilled life.

Maybe I'm missing something, but we don't get a crystal ball when our children are born -- they don't come with tarot cards, or "Raven" who has visions of the future.

So, what makes us think that tiny little chromosome is going to predict anything at all for us?

Choose to live joyfully -- it will make all the difference.