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.

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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.

Maybe some good will come of it...

I always entertain great hopes.

- Robert Frost

Today, my friend, Nicole, blogged about yet another scientific "breakthrough" if you will. There has been new research that may allow scientists to identify babies who may be predisposed to autism. As the article states, this will allow you to "avail yourself of reproductive options."

Translation....we are hoping that we can perfect this test to the point that we can definitively identify unborn children with autism, thus allowing their parents to abort them.

Honestly, all of this technology is pointless save for that reason. We can fix you, and your baby, they promise -- through annihilation of anyone deemed imperfect -- does this sound like any other time in the history of the world?

Think of all the ways that the millions of dollars that are being dumped into this research could benefit our world. Even if there was some magic formula that would make it mandatory for researchers to spend the same amount of dollars in education about such things as Down syndrome and autism as it does in the quest to remove these things from our world.

But, you know what I am hoping for? I am hoping that all of this media coverage, and all of these grand announcements that have been made lately will open the eyes of many, many people. I hope that it will start a moral and ethical debate that will flourish throughout universities, hospitals, doctors offices, clinics, schools, etc.

I have seen so many wonderful portrayals of people with Down syndrome in these last couple of weeks. I have read many accounts of people who are challenging this testing, and debating the need and purpose of it.

Perhaps we are selling our world short to think that just because the testing is there that everyone will subscribe to this "give birth to a perfect human" mentality. Perhaps it will actually make people stop and think...."if I seek out this information....what am I going to do with it when I get it?"

Maybe what we really needed was a little attention from people who might otherwise look the other way, and try not to think about the possibility of raising a child with T21 or autism.

Because you know what? I think we are doing a damn fine job "representin' " and I think our voices will be heard...loudly, proudly, clearly.

Its Only Words - Or Is It?

I am a lover of words. I am an avid reader, and a writer by nature and training. I have given lectures to students about the power of words.

Indeed, words can create immense feelings in us. Words have started and stopped wars, and have the power to invoke great feelings of love or hatred toward our fellow human beings. When used lovingly, words make us feel protected and nurtured; when used carelessly, words can make us feel vulnerable and frightened.

We live in a world where "politically correct" terminology seems to be the cause of the day. Yet, just last night, while watching "Studio 54 on the Sunset Strip," Matthew Perry says to his castmate, "Why aren't you getting this, I know you're not borderline retarded."

Almost daily, on the Trisomy 21 Board I visit, there is a post about the inappropriate use of the word "retard" or "retarded" in media, or every day life. Recently, the word "Wee-tard" was adopted to describe people who play too much Nintendo WIII.

Last week, Dakotah's teacher, whom I have a great relationship with, and whom I really like, used the phrase "That's really retarded" when describing something. She immediately corrected herself to say "that's really ridiculous" and then later apologized directly to Dakotah "because of Paige."

A few years ago, my brother-in-law was constantly using the word retard and calling people around him "tards." I adore him - he is my brother in every sense of the word. And when I told him it wasn't a word that we used around our house, he was devastated -- he never even made a connection to the word as a derogatory term. And he certainly didn't connect it to Paige.
He was embarassed and quite upset at himself.

In our house, for obvious reasons, the word retard is a "zero tolerance" word -- no one slips and uses it because no one would ever use it any way. When any of us hear it, we all bristle and take pause.

Even at the clinic for Child Development where Paige goes, "mentally retarded" is NOT allowed to be used to describe any of the children there, as there are so many negative feelings that are associated with it.

Among kids Dakotah's age, it seems as if the two words that are the most offensive, and the most widespread for insults are "retard" and "gay." Everything negative is called "gay."

I wonder at what point we will begin to understand that calling anyone a name that reflects an important part of our society in a negative fashion is not acceptable?

As I've written this post, I've considered using some of the other "hot" words that we are all so aware of - the ones that degraded people by colour, or nationality or religion. I imagine the gasps of anyone seeing those words on my blog, as those of you who know me know that they are not part of my vernacular.

Instead, what I hope is that we, the media and society as a whole will finally, finally start to gasp at the word retard. That we will not hear it on a show that has probably been through dozens of writers and script run-throughs. That our kids will not hear it on a playground. That we won't see anyone "acting retarded" on YouTube for a laugh.

The funny thing is, in my mind, its not an insult to be considered "retarded" or "gay" or "fat" or any of the other words we use to try and make ourselves feel superiour to others.

I've known many people who have had these labels thrust upon them.

Anyone who finds it impossible to see passed these labels is missing out on a huge, wonderful part of life.

Coffee Break!

"I probably drink way too much coffee. But if it weren't for the coffee, I'd have no identifiable personality whatsoever." - David Letterman

I saw this idea on a few blogs a couple of weeks ago...and leave it to me, I'm always dragging up the rear on cool ideas!!

If you are visiting my site, won't you stop and say hello? I'm curious to know who is reading what I am writing!

Sign my comments section -- and if you blog, please leave your address -- I'll be sure and add it my list over the weekend. (Jennifer, I'll add yours for sure!)