Friday, July 27, 2012


"Once upon a time, in a northern land, lived a Mommy and a Daddy.  They had a little boy who was the apple of their eyes.  As the little boy grew, they saw how lonely he was and wanted to give him a brother or a sister to play with. 

So, they tried.  They tried and they tried and they tried. But, no matter how hard they tried, they could not have a baby. This made the Mommy very sad as she wished she could have a baby with all her heart.  She wished it so hard that she could not stop thinking about it, day or night.  Even when she was eating dinner or playing with her boy, she was still wishing for a baby.  One night in the garden, she saw a falling star.  The Mommy squeezed her eyes shut really tight and wished for a baby as hard as she could.  As she made her wish, two more stars fell side by side, but she did not see this as her eyes were closed.  Her wish made, she went back in the house and went to bed.  That night, she slept the deepest sleep and dreamed of two dragonflies.

The next morning, the Mommy woke the Daddy up as she was crying for joy.  The wish had come true!  The Mommy was going to have a baby!  The Mommy and the Daddy laughed and clapped their hands with joy.  A little while later, they laughed and clapped again for they were told that they were going to have two babies!  One baby was a boy and the other was a girl.  The little boy was so happy, he could not stop talking about the babies to any one that he met.  He was going to get a brother AND a sister!

As there were two babies, the Mommy had to see many doctors. She was very puzzled to see that they all had long faces when talking about the babies.  They would hum and haw and and scratch their beards in thought as there was something different about the babies, but they couldn't quite put their finger on it.  One day, a month before the babies were born, the Mommy went to one last doctor.  They did many things and afterwards the doctor told the Mommy that her unborn baby boy was sick.  He had a heart with a hole in it and would be poorly all his life.  The Mommy was sad.  Very, very sad.  The Mommy cried big tears into the Daddy's shoulder while the Daddy would try to comfort her and not let her see how sad he was too.

Luckily, the Mommy was a healer.  She started reading everything she could find about poorly little babies with holes in their hearts.  She would read new books and old books and tomes that dated back to when the world was made.  Night and day she would read and read and read, until her eyes were sore and she got a headache.  Still, she kept reading.  She would tell the Daddy everything that she learned and he would sit by the fire and nod sagely.

Before dinner one day, the Mommy felt a sharp pain in her belly.  The babies were coming!  The Mommy and the Daddy raced to the hospital.  There was a lot of activity and whoosh!  The babies were here!  The attendants for the girl baby were bright and happy and laughed and danced at her perfect features.  The attendants for the boy baby were quiet and murmured in hushed tones as they shuffled with leaden feet.  Finally, one of the attendants came over to the Mommy and announced that her baby boy was sick.  He was in fact, poorly and did have a hole in his heart.  The Mommy however, was wise from all her reading.  "May I see my son?", she asked the attendant. 

When they brought her little baby boy over, the Mommy recognized him for what he was.  Yes, the little baby did have a hole in his heart.  However, being wise, she realized what many people did not.  That hole in his heart was just a keyhole, one that unlocked his little extra, which was in fact, a gift.  Instead of being poorly, her son was different.  You see, her little baby was given magic.

As time went on and both babies grew, it became more and more apparent how magic the little baby was.  He would laugh and the hearts of those that were with him were filled with joy.  The Mommy and the Daddy and the little boy were so happy with their new babies that they often laughed and clapped their hands in delight.  Despite what the doctors and the townspeople said, they knew the truth about their littlest boy.  In time, everyone realized how wonderful he was and they wanted to be near him always because he made them feel so good.  Surrounded by friends, the Mommy and the Daddy and the little boy and the twin boy and girl lived happily ever after.  The End."

Those of you that follow this blog and are familiar with our life will recognize parts of this story.  It is, in essence, the story of our children.  Some parts of this story are very real.  I do have baby twins, a boy and a girl.  I also have an older son who is the apple of our eye.  My son, baby B was born with Down syndrome and AVSD, a "hole" in the middle of his heart.  These are the facts of our situation;  obviously the rest of the above might as well be a children's bedtime story. 

Recently, a British 'journalist' has come out to say that if she found that her IVF pregnancy was positive for Down syndrome, she would terminate her pregnancy.  Good for her.  Both she and I live in places where we have that right to choose what we want to do in such situations.  That is not the issue here.  The problem lies with the comments that she made afterwards, including describing those with DS as a burden on society and medical resources.  To further upset the proverbial apple cart, she went on to say that she wished parents of children with Down syndrome (parents like me, for example) would stop "Disneyfying" the situation.  Essentially, adding a spoonful of sugar [coating] to make the medicine go down.

I'm sorry to break it to this person [who shall remain unnamed here, as she should not receive any more attention than she already has], or anyone else that feels this way, but there are no dancing candlesticks at my house.  There are no pirouetting sprites and no large mice trying to get me to use Mousketools on this blog, either.  Walt does not live here.

What does live here are poopy diapers, sore gums, lost sleep, a messy house and dirty laundry, just like every other family with three or more kids.  The only difference in my house is that one of the children is a little slower to develop than the others.  That isn't Disney either, that is fact.  Most of what this person states about children like my son however, belongs in the realm of myth.  There are many popular misconceptions about DS; unfortunately, instead of taking the time to educate and report the facts, she chooses to spin a few of the more popular pieces of fiction like so much yarn. 

For starters, I am sure you have heard the old adage that people with Down syndrome are "always happy".  They aren't.  People with Down syndrome have the same emotions as you and I.  They get hurt when people make fun of them.  They feel pain.  They get sad and feel loss, just like everyone else on the planet with any shred of empathy.   Another old saw is that all are "severely retarded" (to use an old, outdated and offensive turn of phrase).  The developmental delay in Down syndrome ranges from person to person, this is true, but most with DS fall into the mild to moderate range (which can also be affected by early intervention, good diet practices, etc).  In fact, most are totally integrated into regular schools and only have some classes with assistance or separately.  All are capable of learning, will walk and communicate (if not talk) and will live rewarding lives.  People with DS go to college.  People with DS get married.  If you have any doubt in your mind that people with Down syndrome will "amount to anything" as the saying goes, you only have to look to Tim, who runs his own restaurant in New Mexico.  How about the multi talented Sujit Desai, who plays more instruments than I can count?  How about actors like Lauren Potter that are household names?  My son will probably never be a doctor.  Guess what?  Neither will I and neither will most of the people reading this.

A scarier story is the angst ridden "What happens when I'm gone?".  Every responsible parent of every child asks this question at some point.  Being an older parent of young children, it does occur to me from time to time.  However, the approach to this is two fold:  understanding that there is a certain amount of things that you can plan for and accepting that sudden life events happen.  We can all, almost without exception, get hit by a bus tomorrow.  That is life.  As a parent, you have to bet that there are things that you really can't plan for.  You can also quite easily prepare for your expected death by setting up a special kind of trust fund, an absolute discretionary fund that will ensure that your child with special needs will be taken care of for the rest of their life.  It's really that simple.

As for the impact on the family, introducing a child with Down syndrome is pretty much like introducing any other child, right down to the "meet your new brother or sister".  Once again, I will point to the independent studies that show the positive impact a child with Down syndrome will have on a family.  I was told once, by a not so fairytale troll, that I will be miserable and my husband will leave me because of my son as 'no man' will be able to 'handle it'.  I am lucky to have a fabulous husband who, not only loves ALL his kids dearly, but he's made raising them his job.  Sean is a Stay-at-Home Dad.  He isn't perfect at his job and I don't know anyone who is.  However, he not-so-magically 'grew a pair' and stepped up for his family when we needed him most.  Not to take anything away from his efforts, but he is doing what he is supposed to do by being here for his family.  Sadly, yes, many fathers of children with special needs fly the coop.  I have met more than a few women in this position, who raise their children themselves as their former boyfriends/husbands go on to have other children that they do fawn over. It is a heartbreaking situation.  However let me make myself clear by saying that any parent who abandons their family, is a COWARD in my books, plain and simple.  Blaming it on an innocent child is even worse.

Life does tend to throw in some interesting plot devices now and again.  If there is one thing that my *cough* years as a nurse has taught me, is that nothing is a given.  It is fragile thing that is easily lost for seemingly no reason at all.  Drunk drivers happen, cancer happens.  The most perfect children with the most desirable traits are gone in an instant.  *Poof*.  Even sadder in a way are my mentally ill patients.  We have high school football stars with solid grades who one day, God starts 'talking' to.  Schizophrenia happens too,  so does drug and alcohol abuse, depression and suicide.  No child, regardless of their chromosome count at birth, is a sure thing. Parents aren't a sure thing either;  I see hundreds of teenagers a year who, having been given 'everything', run wild to get what they really want:  their parents attention.  Not attention from the babysitter, not their peers (who are the only people that they ever really form attachments with), but their parents.  There are also the 'throwaway' children too;  teenage children of families who don't fit into their parents schedules or new relationships.  When they become too much to handle, they are fobbed off on whoever:  relatives, the hospital, boarding school, the streets.  There are abused children, both physically and sexually that are so emotionally wounded that they may never heal.  Sadly, I wish I could rewrite most of these stories, but that is not in my power.

Lastly is the fabled medical expenses/burden on the medical system.  I'm Canadian.  This is not a problem for me.  If you live somewhere in the world without health care, I cannot comment on your situation.  Yes, I do take Wyatt to more doctor's appointments than the other two kids combined;  he will have to have open heart surgery at some time in the future. That is totally covered and I have no worries about the financial side of any of that.  Oddly enough, Ms. I'm-A-British-Journalist also has the benefit of universal health care, but I digress... In terms of anything he may have 'wrong' with him, his conditions are a) completely treatable and b) occur in the general population as well.   In fact, every 'disorder' that people with DS have occur in 'typical' people too.  They are also almost always treatable these days. What I can, quite comfortably comment on, is the 'burden to the system'.  As I have said, Wyatt will need some time in hospital, open heart surgery and checkups and preventative care.  Even if he develops diabetes and a few other things, his costs will be a drop in the bucket compared to those other children I mentioned earlier.  Who costs more in a lifetime?  My son, with Down syndrome, who will have a job and pay taxes?  Or the 30-something poly-substance abuser who turns tricks to get the next fix, is suicidal, aggressive, full of pneumonia, refuses treatment and is in the ER at least twice a month? I'll give you a spoiler:  it isn't the kid with DS.  Sadly, I, like many of my colleagues are slowly burning out as I see several of the other kind every single shift.

They say if you have met a child with Autism, you have met one child with Autism.  The same holds true with Down syndrome.  As that extra gene expresses itself in so many different ways, it is hard to say how this one or that one will turn out.  It's a gamble, just as much as whether or not my children would look like me or my husband.  That part is fact.  Life is also unpredictable.  Also fact.

However, what you choose to do if you find yourself in this position is your business.  If you want facts and a glimpse of what the future looks like, I and many other parent bloggers and activists out there, can help.  Aside from living with a child with DS, we also put a great deal of time and energy into making sure we have the latest information that will be the most useful.  We've all stumbled in the dark with this one... we want to make sure that no one else has to.  Trivializing and making a mockery of our efforts does nothing for anybody, including making yourself look like (more of) a jackass.  We do not "Disneyfy" Down syndrome, we do not live in a world of fantasy and delusion.  Down syndrome is a reality to us.  The prejudice and misunderstanding that we encounter on a daily basis is a fact.  This is not a world of dreams and wonder, this is a search for equal rights and opportunities.  This is a civil rights movement, in a world that is so permissively ableist that "Down syndrome" and "Retard" are still used in everyday dialogue to elicit a laugh.

When you become a parent, you will do anything for your child, even try to change the world.  I, and others like me, are trying to do just that.  I will not apologise for that.  I will also continue in my efforts to show that Down syndrome is not a terrible thing and that people with special needs just want the same things as other citizens.  Everything else is equivalent to a fairy tale, full of imaginary monsters and designed to scare parents.  There is a lot of love in this house,  there is a lot of joy and laughter and happiness.  If you want to spend some time with us, you too will see a wonderful little family that is everything that I can wish for. Down syndrome may not have been what we envisioned for our son initially, but he has it.  His extra chromosome may not have opened a whole new world of magic and wonder to us, but it has made us more open to new ideas, more humble, more aware of our actions.  It has made us better people,  it has made us better parents.  That is a fact, not fable.  What you do with your life is your business.  You may not want our life and that is fine.  However, you don't get to perpetuate myth and then accuse us of living in a dreamworld.  My life is not like my story at the beginning of this post.  This is not Disneyland.  This is Down syndrome land.  Ruefully, people like that British 'journalist' are still too small minded to go on any of our rides.

SWAN Blog Post Awards


  1. Perhaps it's time you published a book, your story is the most "real" informative, heartbreaking and heartwarming story of raising a special family....I'm certain there are many future parents who, having been given this news would benefit greatly from your experiences.... You are making a difference...keep it up Jen!

  2. Beautiful, real. Brought me to tears again, Jen! I will be happy to share, I want everyone to know what you (and I, to a lesser extent) know: that people with DS are as deserving of love and respect as anyone else.In some cases, more so.

    1. Thanks so much Susanne. I was in tears a few times myself while writing it.

  3. Very very well said.
    I can't stand people who preach without having any knowledge of what they are talking about, like that so-called journalist did.
    I would not have been so nice to her. She should do some research before talking about any topic. It's her job, afterall!

    1. Thank you very much. You never know what you are going to do in any situation until you are there...

    2. Thank you for this honest account of what a DS family feels! My daughter has DS! When she was 13 she was diagnosed with Moyamoya Syndrome (basically she had a stroke). An Asian Resident came into PICU, looked at her chart and told me that due to DS she had already lived 1/2 her life anyway! SERIOUSLY? I know that old textbooks say that because years ago kids like ours were born with medical issues that Dr.s did not know how to fix but Praise God we have progressed from that time and she will probably out live me! She is 18 now, has attended 2 proms, graduated with her peers and has a part time job. MoyaMoya did cause her to regress cognitively some but I continue to work with her. Her father was one of those Jerks who left us when she was 3 months old stating he just couldn't live with a less than perfect child. PLEASE! Show me a perfect child! Any way, I just want to thank you for pointing out that we do not live in a fairy tale but our children ARE part of the family...a treasured part just like their siblings!

    3. Wow Tami! Thanks so much for the comment and sharing your story. You are an inspiration yourself. Way to go!

  4. Thank you again for another heart felt and enlightening post. I haven't read anything written by this "journalist" and I'm glad I haven't. BTW the UK not only has universal health care but one of the best health systems in the world.

    I support the right to chose but comments by uneducated and misinformed people like that are just, well, ignorant.

    1. Thanks Shayna. Yes, the NHS is superior to our system here in Canada. I'm posting a link to a WHO graphic that ranks the UK as #18 an we have slipped to 30. The data is from 2000. Look for Axel's comment below.

  5. Jen, first of all, great post (as usual)!

    I read a transcript of large parts of that journalist’s interview, and I will mention something that gave me pause: she and her husband actually live in France and she mentioned that the infrastructure/services were lesser than what we might be used to/expect. Other than that, the whole thing just galls me - while I respect other people’s freedoms and choices, when I see the bogus nature of the ideas they use to guide those decisions, it just ticks me off.

    As you point out, not having a chromosomal abnormality does not guarantee anything. Within my circle of family and friends I have seen babies (growing into toddlers and beyond) with seizures, kidney problems that require a lot of extra appointments/checkups and speech development problems that require constant intervention by speech therapists. All of these kids are chromosomally typical, and fortunately will grow up perfectly ‘normal’ as they heal and outgrow these challenges. Though some of the miseries the families went through I wouldn’t wish on my worst enemy, they are actually fairly typical challenges that so many families will go through, whether or not their child has a condition that is detectable during pregnancy. Challenges to physical and mental health, developmental or even emotional issues are part of raising children - if you don’t get this, then YOU ARE THE ONE LIVING IN A DISNEYFIED, FAIRY-TALE STATE OF DELUSION.

    As you well know, I use the fairy-tale lens to view our experience with DS, but it isn't a matter of denial, or that we don't have moments of cynicism or misery. It's simply a life choice, or philosophy to be optimistic. I think Kelle Hampton suffers under the same accusations of 'Disneyfication'. Maybe there would be less of a fantasy element to our interpretation of life, if we didn't have to constantly do battle with ignorant 'trolls'.

    1. "Challenges to physical and mental health, developmental or even emotional issues are part of raising children - if you don’t get this, then YOU ARE THE ONE LIVING IN A DISNEYFIED, FAIRY-TALE STATE OF DELUSION"... SO TRUE!!!

    2. I did see that bit about France. However, according to WHO, France's system is rated #1 in the world (as of 2002)

      We all have our style of writing Axel; you choose a more story-book presentation, tis true. However, you don't Disneyfy, that is completely whitewash any problems, etc, which is what I think Whassherface was on about. Like or hate Kelle (I happen to like her) she is a fabulous photographer. It's true.. we probably wouldn't have to be so positive if everyone else wasn't so bloody negative.

  6. Jen, I loved your post- it's so honest. At 9 months, my twins are the lights of my life. At one point I felt I never would or could feel this this much joy. Are there challenges - yes! Are there delays and noticeable developmental all means. But there is so much love. Suddenly you start to realize that extra chromosome isn't the end of the world. You can't explain it to someone who hasn't 'walked the walk'. You go through a metamorphosis and you realize that you are forvever changed...for the better. I feel blessed to be on this journey - something I could not have imagined 9 months ago. Keep up the fantastic work!

    1. Thank you so much. You've also put it better than I ever could. :)

  7. Thank you for this post. I have a 2 year old son with Ds and I have worked at Disney and I will say that not even Disney is a fairytale. Which proves the point that perfection doesn't exist. The journalist should realize the irony of her statement. I also appreciate Axel's reply. Even parents of typical kids 'Disneyfy' their lives to some extent. I have never seen anyone post a picture on Facebook of their child having a tantrum in the middle of Target for instance. We all have the freedom to see life in our own way. Life would be a miserable road to travel if we all focused on the negative in our lives!

    1. Thanks for stopping by! LOL on your Disney comments; I'm sure there are a lot of secrets locked in that castle.

      I almost included a short video of Wyatt freaking out to be honest, but decided against it for his sake. Who needs that? :) We are a positive bunch sometimes, true. I also think as a rule we have a better bunch of coping mechanisms, but that is just me. Again, thanks for the comment.

  8. So well said. We have slightly older kids, 17, 15 (ds) and 10. There are no guarantees. That is the hardest part of being a parent. Learning you are not in control. Your dreams are not your kids... Your dreams change too... We learn from our kids, all of our kids. If we are lucky we teach others the lessons of tolerance, patience, appreciation of the little things, and laughter. Thanks, Sue

  9. Wishing the journalist has the courage to fight after the fact for her child's peer after getting the right information - IDS for Life and

    Let's not judge each others coping mechanisms or high or low capacity for learning

    We all are dependent upon someone in the long run if we live a long or short life. This journalist would Likely have been spared the "burden" & cost of grandchildren

  10. Post the freak out video someday soon--to show Disney in full force! I will take a survey of the hours worked by employees at corporate Disney too & show how family-friendly they are NOT. Besides leading us all into bancruptcy willingly with their super effective marketing!

    The burdens of not only the addicted & mentall health challenged are not considered but we ALL are social beings & crave connections. Who doesn't want to stay in close touch with their birth family OR good friends (if birth family is not your cup of tea) as we age? Facebook alone proves that with it's millions of users many against their will but it's A very efficient way to be connected

    Alzheimer's impacts and worries all of us, let's minimize it's effects. Maybe the journalist can champion our cause through fundraising in this area without much ado about nothing

    Hold your enemies closer than friends, I think we can win her over!

    No dream is too extreme.--Walt Disney

    Please let's all get along and respectfully disagree & as a journalist research & meet the people we plan to write about.

    I don't see too many bloggers campaigning families to go to spec needs dance night at the local hang out. Kelle rocks and YES there is a place for rockers & people who prefer to empathize the fun parts of DS. Lots of other people can write about why you might & might not need to wear glasses--it's not her strength or area of interest

    Crop away and educate I say as long as the kids enjoy the costume changes, make the most of it if that's where you excel. She will find her way into more issues as she and her family mature. It's a long process that many of us have in some cases decades more experience than her with (being a parent in general and or DS)

  11. And we also face death, illness & tragedy DAILY within our own community not only misunderstandings. Excuse us for seeing that there is more to life than our own trials we face & overcome often that we have to choose as the lesser of a few not great options.

    Another aspect & fear is of intelligence which is also a false concern as intelligence is certainly notas condition of happiness or success.

    A diagnosis is not a prognosis, it tells you nothing about the life of the child.

    A recent IDS for life caption was: I have an awesome life. There is no prenatal test for that.

    Check your facts ms journalist. No excuse for not getting a complete pic of all sides, she has to be held to a higher standard. Please let's make sure we refute each misconception she is perpetuating!

    Love love love your writing, keep at it!!!

  12. Excellent piece - very well written. Thanks for sharing

  13. We WILL change the world (or at least that part of it that matters, i.e. those who mean well but just don't know any better). We just have to keep at it. Disneyfy schmisnify, I've now on several occasions referred to my kid as a vampire, which, I think, says a lot.

  14. Thank you, thank you, thank you.


  15. We are delighted to let you know that this post has been nominated in the ‘Best International' post category of the SWAN UK Blog Post Awards (aka The ‘SWANS’)

    Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you – make sure you let them know which specific posts have been nominated!

    If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

    Good luck!

  16. Oh yes, there are so many in between places that are joyful and hard and everything else. Thanks for sharing this.

  17. Yes there are so many in between places that are joyful and hard and everything else. Thanks for sharing this. Heather

  18. I love this post, it is so well written and manages to educate and enthrall at the same time. It is well deserving of its place in the SWAN blog post awards finals.

    I thought you would want to know that the winners will be announced on 13th April at 2pm as part of our Undiagnosed Children's Awareness Day. Keep an eye on the SWAN UK blog or twitter where I will announce using @SWAN_UK and @RenataBplus3 ... GOOD LUCK!

    p.s. You can pick up a finalists badge from the SWAN website on the finalists page x


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