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!)

Thank you, Amanda Baggs

Amanda is the woman who is portrayed in the video below. In the past two days, I've read Amanda's Blog from beginning to end, including all the comments that have been left for her since she started writing.

I am hypnotized by her beautiful voice in the beginning of her "In My Own Language" video -- when I play the video, Paige comes running to hum along with her. Perhaps Amanda's next adventure should be to put that voice to a cd that we could soothe our babies to sleep with.

I don't want to use words such as inspirational or amazing, as I suspect that Amanda does not see herself as particularly extraordinary, but rather understands the limitations of those of us whom society labels "normal."

Indeed, I deserve the "handicapped" label much more than Amanda does. Because Amanda's limitations are more visible to our society, we judge her with many labels that do not even begin to tell us who she is as a person. But my limitations are much more hidden, and much more acceptable to the world.

We perhaps foolishly assume that Amanda needs to be fixed, and set out to fix her. I imagine many people over the course of her lifetime have tried to train her into being a more "normal" person. We go so far as to assume she would be happier, better off, if we could just achieve this state of normalcy for her.

Many of us do indeed see her as an unperson, as she assumes. We fall into the mistaken belief that what you see is what you get, and that, because she looks and acts differently than we do, that she does not have a full range of intelligence, human emotion, and personhood.

For about two or three months, I have been trying so hard to put into words the things that Amanda is telling us. I have been so bothered by the feeling that we are missing something in our "inclusion" quest for our children.

We want so badly for our kids to be a part of the big world that we spent inordinate amounts of time teaching and training and showing them the 'ways of the world' -- and while I fully understand why we do this, and also believe that it is a good thing that we do this, I am also worried that we will spend too much time trying to "normalize" our kids, and not enough time enjoying them for the unique, wonderful human beings they are too.

Five years ago, I would have insisted that Paige be fully included in a classroom of her same age peers for the entire day. I would have fought for that in any way I had to.

This year, my heart and soul have been leading me to a softer approach. Paige needs to be with people who are both different than her and who are like her as well.

She is not broken; she does not need to be fixed. Paige deserves educational opportunities similar to those of her peers. She is a smart little girl, who is classified as "low-functioning" by anyone who wants to label her. But she learns, and she learns well. I can see her observing her world, and trying to understand some of the things that still puzzle her.

She has many friends at school. And I think the majority of those friends are ones who just see her as she is...simply Paige. We have developed a sort of "reverse-integration" plan for Paige this year, where part of her day is showing the children in her classroom about her world as well. The children fight to be the one to spend time with Paige -- to do projects that are perhaps way below them cognitively, but are Paige-led and allow them to really know this wonderful little girl.

They are getting it -- they are understanding what Amanda has shown us in her video -- that we all excel in some way, and we all fall short in others.

Thank you, Amanda, for putting into words something that I could not, even though I am supposed to have a command of the one and only language I use. Thank you for translating it in a way that this limited brain of mine could understand. Thank you for showing the world your value, and shame on any of us who would have otherwise missed it.

Be patient with us, Amanda -- we still have so much to learn.

Please watch this video

I fixed this if you've tried to watch it and couldn't!

This is an AMAZING video about a woman who is autistic. Its quite long, but so worth watching -- it explains so much.

I am so humbled by this video, that I'm sure I've watch a dozen times. This woman also maintains an amazing online journal -- you can get the URL from the comments section of this post.

I've often been asked how we "communicate" with Paige, since she is virtually non-verbal. But she is so expressive that I forget sometimes that she doesn't have spoken words. They say that communication is only 5% words and the rest is body language, etc. -- that is so true in our house!

Take the time to watch this...

In My Own Language

Yay!

National Down syndrome Congress

*~*~*~*~*~*~*~*~*~*~*~*~

After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:


FOR IMMEDIATE RELEASE

Contact: David Tolleson
770/604-9500 January 23, 2007

ATLANTA - The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.

The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.

Among the concerns cited by the medical doctors comprising NDSC's Professional Advisory Committee:

The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in "at risk" pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.

Based on ACOG's figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.

All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual's wishes and not overtly or covertly pressure patients to undergo undesired screenings.

Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG's recommendations do not address this situation, nor how it will be corrected.

Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.

Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.

NDSC Executive Director David Tolleson notes that "Down syndrome is a serious diagnosis; however we have seen families thrive." "We empathize with obstetricians who fear 'wrongful life' lawsuits," Tolleson adds, "but the cure for that problem is tort reform, not preventing the births of a whole class of people."

Jeff Mattson, a man with Down syndrome, agrees: "People with Down syndrome want to live life to the fullest."

According to Tolleson, "the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child."

Adoption Thoughts

With the latest recommendations from the ACGO & the SOGC regarding prenatal testing, and with my friend, Nicole's ( http://all4gals.blogspot.com/ ) connection to adoption, many of us in the T21 community have been thinking a lot about adoption lately.

I’ve always felt that I would have more children with T21 in my life – I don’t even know the clear path to how that will come about, its just one of those peaceful feelings that you sense deep in your soul.

And as Nic will attest to, sometimes it happens when you are least expecting it.

Even with that, I must admit that I have given relatively little thought to the adoption process other than announcing almost daily to my husband, my family, and anyone who would listen, that I would love to adopt a child with Down syndrome.

My views on adoption have always been very one-sided, as I am sure most people’s are. I imagine a loving family who desperately want a child finally being given that gift. I see the Hallmark commercial in my mind where that baby, or that child, is welcomed by a family so very grateful and so very happy.

Of course, as much of my life perspective’s have been wonderfully changed by Paige, I almost always relate that commercial to a baby with Down syndrome. (In fact, I relate every baby commercial I see to Down syndrome, but that’s a whole different post, and a whole other campaign we must embark upon!)

I know the statistics – that there are many families waiting to adopt a child with T21 – that these families are comprised of single parents, and married couples, and young people, and older people, and quite often, of people who’s lives have already been touched in some way by T21.

But through the beauty of Nic’s story, and through the very real contemplation of the fact that the medical community wants to identify ALL babies with T21 prenatally, I have now given much thought to those families who chose adoption for their children.

As a mother who screened kindergarten teachers just slightly less than the Secret Service screens people who will be near the President of the United States, I cannot for a moment place myself in the perspective of a parent or a family contemplating adoption for their child.

What a leap of faith it takes to make the adoption decision for your child. To do so truly means that you must face the unknown, that you must believe in a process and a system that will ensure your child will have the best possible future.

And all of these processes that are put in place are not infalliable. No matter what we do, no matter how many questions are asked, we are all humans, and that child will live with people who are not perfect.

At the absolute best, he or she will live with a family that makes mistakes, is grumpy sometimes, is overwhelmed, who faces hardships – financially or emotionally.

At the absolute worst, well, that is unimaginable.

So, how can we, those who are fighting so hard to tell the world about the beauty and wonder of people with T21, not embrace those who make the adoption decision? How can we not come together, with our hearts open, our shoulders available to lean on, our arms outstretched, to make this journey a bit easier for those who make this choice?

How can we possible not celebrate their decisions, commend their unselfish choice, and stand up for them against those who would judge.

Just imagine…imagine…having to make such a faith based decision – so unsure of the unknown for your baby or child, and then having those around you criticize you, judge you, tsk at you?

Imagine the strength that one must have to make this decision.

For some families who give birth to a child with Down syndrome, choosing adoption is a very real option. And we must embrace this option – we simply must do this. And we must do a better job at supporting those who make this choice.

I frequently write in my blog about how I feel called to this world of T21 – that it is my “ministry” and that I am very honoured to be a very real part of it.

Just as I have grown and learned and changed my mind about topics relating to T21 over the years, I think that we must acknowledge with great respect the fact that all of our stories are very different – all of us have paths and journeys that are exclusive and unique to us.

Just as I embrace and advocate for Paige in my own way, there are families who have touched by T21 who will find their own path – and that path may very well be the road less taken, just as mine has been – one that gives them strength and makes them pioneers in this adoption route – perhaps a child was given to them to show the world that families are made in many different ways. And perhaps their intended journey is to help all of us understand a little better how the decision to chose adoption for a child comes about.

Boof!

Kirby had a clean bill of health at the Vet's today! He weighed in at 38 lbs -- up from 16 lbs on December 9th! He is such a love puppy!!! Paige calls him "D-Dog" and can't get enough of him. Luckily he has a very sweet personality, and seems to enjoy all the tight hugs and affection.

He's been having a great time enjoying his first snowfall -- a very late arrival for Ontario -- and buries his head in it like an ostrich in the sand! He romps from one snowbank to the other, rolls in it, shakes, and does it all over again.

He is so eager to please and so easy to teach.

His puppy teeth are coming out, and Dakotah keeps trying to get away with putting them in the tooth fairy box, and tucking them under the beanbag he has adopted as a bed. I think I am going to fool her and put a snausage in it one night!

Of course, we take this personally

In the Ottawa area where I live, if you give birth to a child with Down syndrome, and you receive a Parent Pak from the Down Syndrome Society, you will find tucked inside a letter from me, talking about our journey into the world of Down syndrome, our family, and our experiences.

The letter is not sugar-coated; I speak of those first years of Paige's life that were so filled with many medial interventions, and of all the changes that we made in our lives to welcome this girl of ours -- the therapies, the changes in perspective that we made, etc.

But, I hope that it is a letter of pure joy that can only have come from knowing and loving Paige; one of the challenge of unconditional love in a way that some parents may never understand, but one that our family embraces every day.

Often, I get calls from families who have just given birth to a child with T21 - who have read my letter, and want to talk. I know how difficult that first call can be; as I remember finding out prenatally that Paige had T21, and speaking to a wonderful person from the DS Society here in Ottawa.

I remember her telling me stories about her son, and feeling so free to ask questions that I could not ask anyone else. And none of those questions were shocking to her or strange to her. She was just a normal mom, raising her son.

It was very comforting to me, and I hope that I have made this journey easier for many families during the last 10 years. I know that I have built friendships with some people that will never end because of that letter -- my friend, Camille, and her absolutely amazing daughter, Emma, who will be a part of my life until my days are over. And our mutual friend, Carol, and her daughter, Olivia, and so many more...

And so, it is, of course, my hope that my "ministry" has made a great difference for many people. I hope that people see me not so much as inspirational, but as a regular ol' mom who shows them that they too can take this journey.

I've also remained relatively active online throughout the years, with breaks when my heart was overwhelmed and overburdened because there are so many people still to touch and connect with.

There are times when the debate has gotten not so pleasant. There is a woman whose daughter was born with Turner's Syndrome, and the same congenital esophageal birth defect Paige has that still spends lots of time on pro-termination boards. She is bitter and angry that she gave birth to her daughter, now about 8 years old, and was not given a choice to abort her. She openly says she would have chosen abortion had she been "warned."

Her and I have gone back and forth thousands of times, as I fear that she is doing a great deal of damage by making this her agenda -- virtually stalking prenatal boards and urging people to terminate.

She paints a horrible, sad picture for people to see, of a child with a great many needs; how it has ruined her life, her marriage, her career. I believe that she needs a great deal of help and worry so much about her child; it seems as if she is quite well cared for, but is she loved and adored?

And she would say the same thing about me; that I am too close to Paige, that I don't "have a life", that I paint too rosy a picture.

I don't know; I guess if I had to live one way or the other, I'm glad I chose this way.

I'm sure that I haven't always made the difference I've wanted to make. I know that I have sometimes spent hours speaking with people online after a prenatal diagnosis, and they have still chosen abortion. I know in my head that I was not their deciding factor; surely they would have had more people, more connections, and more contemplation than that of what I had offered to them.

But it is still painful and personal to me when we lose "one of ours." Its very hard for my heart not to ache, and my head not to wonder what I could have done differently; what I could have said; how I could have reached that person with what I believe to be the real truth -- that our children are so, so much more than a diagnosis.

About 6 years ago, I got a called from a woman who's partner was pregnant with a child who had just been diagnosed with Down syndrome. I spoke with her on the phone a great deal; e-mailed them, and finally invited them to our house to meet Paige and our family.

I knew that they were an alternative family; and that this child was very much planned for and wanted. They were intelligent and friendly, and also very pragmatic. They were indeed doing their research, and readily admitted they had not decided what they were going to do yet.

When we met, they were about 10 days away from their "deadline" (what an ironic term) -- after that, abortion would no longer be an option.

To be fair, they did the footwork -- they had read a ton on the internet; they had interviewed the doctor who runs the T21 Clinic in Ottawa; they had told their families about their son, and the fact that he had Down syndrome.

We spent hours together that day; and I learned a lot about them; about how they had fallen in love; how they had to tell their families that they were gay. They had a wedding ceremony, and one of the women had a daughter from her first relationship.

They were, by all observations, a very loving couple. I gave them a copy of "Expecting Adam" and dedicated it to their baby.

I compared their lifestyle with the upcoming birth of their son; how it would be hard to tell people in the beginning; how some people might judge, and look at him strangely, but, in the end, how the people who mattered would embrace him and adore him.

They shared honestly with me that they had been very lucky to conceive on the first attempt at artificial insemination; that it was a costly procedure that they could not afford to do over and over again, but that they felt somewhat cheated that what might be their only chance had so many unexpected complications.

They considered abortion because they wanted a "normal" child, and did not feel as if they had the gift of time to do it again after he was born.

At the time, Paige was not well. She had just had surgery to remove her gallbladder after a very, very sick winter where we did not know what was going on. We came close to losing her that winter, and she was frail and delicate.

Paige is quite low-functioning, and at the time, was pretty shell-shocked from so many medical interventions. She wasn't bubbly and outgoing during their visit, but rather quiet and aloof.

I felt as if they looked at her rather than to her -- they seemed to be observing, pondering, wondering. I didn't see a connection to her made, and that bothered me very much.

Like all mothers, I wanted them to see her as the beautiful, sweet child that I embraced. I wanted them to see beyond her limitations, to the fact that we knew that she would soar no matter what.

Perhaps it was too early for them to see that, or perhaps they really did see it.

I will never know.

Later that week, I received a final e-mail from them telling me that two days after they had visited, that Beth had gone into labor and delivered a stillborn baby. They asked me not to contact them again, as it was too painful for them.

I will never know if she did in fact go into labor or if they decided on abortion. I will never shake the feeling that I may have failed them.

Lately, I have been particularly haunted by them; as my friend, Nicole, has been touched by the adoption of a child with T21. I didn't even consider it; didn't even mention the possibility to them.

Perhaps that would have made a difference, and perhaps a family would be embracing that child now.

We praise and embrace people who chose to adopt, but we have so far to go to support the families who decide to give these children to loving families.

They're Coming To Take Us Away

First They Came for the Jews

First they came for the Jews
and I did not speak out
because I was not a Jew.
Then they came for the Communists
and I did not speak out
because I was not a Communist.
Then they came for the trade unionists
and I did not speak out
because I was not a trade unionist.
Then they came for me
and there was no one left
to speak out for me.

Pastor Martin Niemöller

Last week, the American College of Gynecologists and Obstetricians, as well as the Society of Obstetricians and Gynecologists of Canada announced that it will soon be offering screening for Down syndrome to all pregnant women, regardless of age.

They are widely touting this testing as a way to ensure pregnant women that their babies are "healthy." All of us who's lives are touched by Down syndrome know better. If the concern was for the health of a child, the intensity of this testing would be focused on better ultrasound screening of a unborn baby's heart, or digestive system, or any number of anomalies that would be apparent on an ultrasound.

A test for chromosomal count does absolutely nothing more than give a chromosome count. That's all. Yet, propaganda dished out by many medical professionals to vulnerable pregnant women convince them that they are ways to ensure a perfect child...that these tests will somehow give them insight into their child's life for the next 20 or 30 or 50 years.

Even the most accurate of tests will tell them very little about their child's future, regardless of whether or not that child has a typical chromosome count.

This week, my nephew and his wife gave birth to a perfect, sweet little baby boy named Cameron.

Cameron's Mom is Jewish, and Cameron will be raised with the Jewish faith and all of its traditions.

Although no one else in our family is Jewish, I can tell you that at just 5 days old, every one of my family would lie down their lives to protect this sweet angel baby. Our entire society would be absolutely appalled if he were to be treated differently because he is Jewish.

History has shown us some very horrible lessons, and we would never, ever, ever, tolerate the eradication of a unborn child because of his religion.

Please pray with me, for my daughter, for the many, many friends she has with T21, that we will be just as appalled at the thought of anyone suggesting for even a moment that our world would be more perfect without them.

Please let our families find a way to get the correct information out to expecting parents; to reach out and share our stories, and to fight the "big guys" -- the medical statisticians who need to see the humanity of what they do.

I did not have Paige because I didn't know. I do not want her despite the fact that she has Down syndrome - I want her because she is my daughter. She is not a burden to our family or to her classmates, or to our society.

She cannot speak a word.

But she has a message.

A message that will not be silenced.

He's here! He's here!

Tonight my nephew, Craig, welcomed his first child into the world.

Cameron William Stevens weighed in at 8 lbs, 6 oz., the exact weight his daddy was when he was born. I am beyond thrilled, and cannot wait to meet baby Cam.

Once Craig has updated his blog, I'll link to it, so you can read the story of his name, and his birth.

Every child deserves to come into this world wanted, loved, cherished, adored. And Cam certainly is. We are already so in love with this little guy, and so proud of his Mom and Dad for the amazing people they are.

I can't wait to see this tiny baby grow into a little boy with the most perfect parts of each of his parents shining through.

Welcome to the world little one. Its a better place for having you here.

A wee bit of heaven
drifted down from above-
A handful of happiness,
a heart full of love.

The mystery of life,
so sacred and sweet-
The giver of joy
so deep and complete.

Precious and priceless,
so lovable, too-
The world's sweetest miracle,
baby, is you.

-- Helen Steiner Rice

I Seriously Get No Respect

About 50% of the time when I answer my phone at home and it is a telemarketer, I hear, "Hi, is your Mom home?" More than likely she is home, but she doesn't live with me!!!!

So, tonight I answer the phone and its Wayne.

"Hi, let me talk to Mom."

"I am the Mom."

"Come on, I'm driving - let me talk to Mom."

"I AM THE MOM!!!"

I'm still not sure he believed me even after he hung up!

I wonder, can one grow a grown-up voice at 42?!?!?

I'm Baaaaaaaaaack!!

Well, after the craziness of the holidays, the kids home for two weeks, and a computer that died and couldn't be revived, I'm really itching to post on my blog! I don't know where to start!

So, look for posts about our holidays, and the different ways we celebrated this year, about our new puppy, about our newest family addition, my nephew Craig's son, due to be born at literally any moment now.

And also, I really want to get my thoughts down about the American College of Gynecologists new recommendations for prenatal testing. As you can imagine, I have some definite opinions and thoughts on that. And, I have some ideas that I hope to put into practice that may make a difference for people receiving the news of this testing.

I'm in the process of trying to self-create a job for myself -- as if I need more on my plate :) -- I'll post more about that as I go along.

I hope all of you who read my blog had wonderful holidays -- and know that I checked in frequently to see how everyone was. For anyone looking for amazing inspiration in motherhood, please click on the blogs on my sidebar -- I'm very blessed to know some very, very amazing mothers.

What A Nice Day

This morning, Paige slept in after we were all up and ready to go off to work and school. It is very unusual for Paige to have to be woken up, as she is quite the early riser.

Dakotah and I went into her room, and she was laying on her pillow, sound asleep, with her hands behind her head. This was quite unusual as well, as Paige usually sleeps with her face planted somewhere between her toes!

We were looking at her sleeping, and Dakotah says, "Isn't it amazing how perfect she is?"

Can you imagine how much I loved both of my children at that very moment?

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

Tonight, we decorated the Christmas tree. O.k...Wayne and I mostly decorated it, as the kids got bored somewhere in the first half hour of production!

Paige laid on her belly and swung her feet behind us, and just looked at the lights and all of the ornaments while we were decorating. Dakotah played with the dog, took 20 pictures of herself on the digital camera, played Christmas music for us, etc.

And...I had an incredible deja vu moment. After suggesting that we anchor the tree to the wall to my husband for the 100th time -- "Look, all we have to do is tie a string around it, the hook is already there!" -- the inevitable happened -- one ornament tumbled the tree!!

So, off to the van he goes to get the twine that we needed. Suddenly, I was transported 10 years back in a very real way. Almost 10 years ago to this very day, Dakotah was 3 years old, watching Frosty the Snowman on TV, Wayne was at the gym working out, and our tree took a tumble.

I sent Dakotah off to get the phone and bring it to me so I could call Wayne as I held the tree in place. As she went to hand it to me, it rang.

It was my ob/gyn with my amnio results. "I'm very sorry to have to tell you this, Mrs. L, but its Down syndrome."

At nearly 28 weeks, the conversation continued, with her offering me the chance to abort -- explaining that in the case of genetic problems such as this, therapeutic abortions can be offered to mothers because of the stress involved, and the risk to the mother's health because of this great stress.

I don't know that I had a reaction to her suggestion of abortion -- I was more interested in knowing the sex of my baby -- a GIRL!!! just what I had wanted! And thoughts swarmed my head of what she would look like, how her life would be, etc.

All this as Frosty played in the background and I held onto that tree for dear life.

When Wayne came home, we talked about the baby, and the news we had gotten. I think I was stunned, and suddenly very conscious of my role as a Mom - that this was our child, and our destiny was about to change in a very big way.

That night, my little girl once again put my life into perspective. As I tucked Dakotah into bed, she kissed my stomach, as she did every single night of my pregnancy, and whispered, "good-night babydoll, I love you."

In that moment, I realized that the baby I was carrying was the exact same baby that she had been the day before, the week before, the month before. Nothing had changed, except I knew a little bit more about her.

In the weeks that followed, I would have many ultrasounds that would show us over and over again that the baby had no functioning kidneys or stomach -- that she was surviving simply because she was inside of me.
Our hope for her became the hope that she would live long enough to be able to harvest her organs and give the gift of life to some other newborn.

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

What a difference those 10 years have made! If I were to ever get that call again, "I'm sorry, Mrs. L., its Down syndrome -- and a little girl" --- I would have to drop that Christmas tree right where it stood, so I could fall to my knees and thank God for this great blessing -- this very, very perfect child.

At the same time...these 10 years have not changed everything. Dakotah still sees her little sister as a beautiful, perfect little girl.

And I still thank God every single day for both of these children, created just for me, perfect for me in every way.

This is my friend, Camille

I've written a few times about my friend, Camille. I want to tell you a very sweet story about her that carries a wonderful life lesson for all of us.

Yesterday, Paige's Living & Learning Class had swimming in the afternoon. I take the kids over to the pool, and Camille meets us there.

Yesterday, Camille also had her friend, Melissa with her. Melissa has two little girls, Bella and Maya. Bella has a progressive, degenerative disease that is fatal. She is a beautiful little girl, with skin as soft as the most luxurious silk your mind can even imagine.

Melissa and Bella and Maya decided they were going to swim with the kids! How fun!

Because Bella needs to be held and supported in the water, Camille offered to go in the pool with Maya.

The "rest of this story" is what I want to tell you about...to see what a special person Camille is.

She did not have a swim suit with her, nor did she have time to go home and get hers. So...she went to St. Vincent's, which is a 2nd hand store that sells clothes to raise money for the poor, like the Salavation Army.

And...she bought a bathing suit. Any old bathing suit. She just held it up, hoped it would fit, and away she went.

When she tried it on, it was short for her, and didn't fit her well. Most women, in their vanity, would have said "forget that." Most of us wouldn't get caught dead in a suit that we didn't think looked good on us, or that we felt uncomfortable with.

Not Camille. She didn't even hesitate. She shrugged it off, laughed, and said, "Oh well, we'll have fun...that's what matters."

This is my friend, Camille...who always sees the bright side...who walks on the sunny side of the street.

She found a moment of simple childhood joy -- splashing in the water -- and seized it without hesitation.

What a wonderful way to live. What a wonderful person.

Christmas is coming!

Its such a busy time of year, its no wonder my head is swimming with so many ideas that I'm having a hard time organizing them well enough to post in my blog.

Christmas is fast approaching, as it always seems to do for me. I'm a very organized person, but time is such a premium in our fast-paced lives that I have many last minute details that need to be tended to.

My house is very decorated for Christmas, sans Christmas tree, as we are not entirely sure how Kirby is going to feel about a tree. Actually, we are pretty sure he is going to really love a tree, lol...thus our hesitation to put one up until the kids are out of school and he can be tended to full time.

He's been an amazing puppy so far. He visited Paige's school this week. He is very sweet and quiet and loves attention. He is very smart, and is learning commands already. What a good dog we have gotten. So good in fact, that I'm considering training him as a therapy dog, to go and visit elderly people and some of the people who live in our area group homes.

Our vet has told us she thinks we got much more Newfie than we thought -- we thought he was just 1/4 Newfie, and the rest lab, but she says he is Newfie through and through in his personality.

So far, my Christmas plan to celebrate with our children is working out well. We are talking about family traditions and memories of past Christmases, and are making plans for everything that will end up in our scrapbook. Its been a good season for us...

Introducing...

"Kirby Jamal"

Isn't he just the cutest?!?! He is 10 weeks old, and is a black lab with about 1/4 Newfie mixed in.

He looks like a little bear cub when he is playing in the snow.

He is such a good little boy -- no accidents in the house yet, and he is so laid back. He likes to hang out and be near us.

He's going to be a big boy, who probably won't realize it, because he's such a love. He already tries to get into his water bowl and go for a swim! He actually paddles in it with his front feet, it is hilarious.

We are all head over heels!

Watching the Westminster:

Reflections of a Birthday Party

Yesterday, Paige went to a birthday party for her friend Macky. Macky turned 8 years old this weekend. He is nearly two years younger than Paige, but because of the way their birthdays fall (school cut-off is December here), and the fact that Paige didn't start school until she was 5 (normally, kids start at 4), they are in the same grade -- Grade 3.

Macky is autistic, and shares most of his day with Paige - They go to the regular grade 3 classroom together, and then are in the Living and Learning Classroom in the afternoon, where they work on life skills.

At Macky's birthday party yesterday, there were 10 children. Macky and one other little boy, Damien, are autistic. Damien is an amazing child to watch. In one aspect, he is very developmentally delayed, and has some very difficult problems to overcome. He doesn't have a wonderful family support system, and he is very far behind socially. When you say to him, "Hi, Damien! How are you today?" He will most likely answer by simply repeating back to you what he has heard. He is not greatly conversational.

However, he is six years old and can read incredibly well. He could read an encyclopedia from front to back. He couldn't put any of it into his own words, but if you were to take a passage and change the words around, he could surely find that.

The mind of a person with autism is immensely fascinating--to try and deciper the thought processes of these kids, and how to "re-fire" their brains to connect in all the right ways must be a very daunting task. I tip my hat to the researchers who are trying to find the answers for people with autism.

Also at the party were 8 "typical" kids from their Grade 3 class. All kids that Macky and Paige have been in school with for the last 5 years.

I never stop being amazed at how much a part of the class Macky and Paige are. The kids all play together, and all have great fun together, and no one seems to even notice the differences. All of them are immensely patient with Paige and Macky, and readily accept their quirkiness as just a part of who they are.

Its a great life lesson that the children who go to school with Macky and Paige have been given -- one that will indeed change the world for them and for their children. They have learned lessons that many of them cannot even fully understand yet; lessons of compassion and acceptance and love.

I have often wondered if this attitude of embracing Paige and Macky would change as the children got older, as the differences became more apparent, and as the kids no longer looked like cute "babies" for the rest of the school to oooooh and ahhhh over.

But...like all relationships that begin with love, it has only grown stronger -- this tie between all of these children. Most of them have never been in a classroom where there wasn't a child with special needs -- they do not see that as unique or different -- they see it simply as it is.

These are all Paige's peers -- the ones who are "typical" and the ones who are not. They are all people who will touch her life in one way or another. They are the people who will stand up and cheer for her when she accomplishes a new task, and the ones who will patiently wait while she tries the same task over again.

That, to me, is what true inclusion is. Its not about insisting that she sit in a classroom of kids her own age to give the appearance of inclusion. Its about letting her be the included one sometimes, and letting her be the one to include at other times. Its that balance that makes it successful.

I often think abou this when I read about families having problems with integration or schools that are not cooperating to actively educate all children.

What better "resource" than to have a child with Autism or Down syndrome, or any other physical or developmental delay in the classroom?

In a world where it is critical that we teach very important life lessons very early on, any school system that would not embrace this opportunity should not be educating anyone.