Postively New Year's

Here we are again; New Year's Eve.  It’s a time for reflection, a time for resolution.  It's a time where we look at where we've been and where we think we are going.  It's a time where the partitions between the past, present and the future are at their thinnest.  Despite all our shortcomings, despite what may have happened in the old year, it always seems that we are all on the cusp of something wondrous.

That's not to say that life is always neat and clean peachy-keen.  It isn't.  If you know anything about my life (and reading this blog, how could you not?), you will know that my world exists on a trade route that visits all stops.  My regular ports of call include Zen, right through to Hot Mess and straight on to Disaster, then back again once more.  This isn't due to a stroke of bad luck, a mental illness or even a magical curse.  It just is.  It's life.  Sometimes the wind is with you, sometimes it is not.  Sometimes it sucks.  Buy a helmet.

It's well known that my year has been all over the place.  I'm not going to go into that right now.  I will say that there have been a lot of points where life has sucked.  Big, giant, donkey balls kinda sucked.  There have been times where I have not known where to look, what to think or what to do next.  Those that know me well, know that this rarely happens.  There's always something I can do.  That comes from nursing; the ability to act quickly (whether right or wrong in the end), to come up with a plan and just GO. There have been times where I have lost my 'go'.  I don't do powerless or hopeless very well. 

My sense of humour, however dark, has seen me through those times.  My family;  my husband and my son and my (not so!) little babies have seen me through.  My friends, my extended family... all beacons in the storm.  I've employed all the old faithful coping mechanisms; Sarcasm and her edgy younger sister, Snark... food (especially chocolate!)... deep breathing and visualization, then finally research and blogging.  They have all helped, for better or for worse, in the end. 

What I found really surprising was how much educating one's self an having a positive outlook helped.  That sounds silly in a way, and superfluous in another.  I have told hundreds (if not thousands) of people in my career to be more positive, but really I'd never gotten the hang of it myself.  Sarcasm or something darker always won out.  Actively deciding one day to accept and overcome obstacles that I perceived to be in my path was one of the best things that I had ever done.  It gave me the ability to focus on learning more about my son's conditions, and ultimately, learn more about my son.  I was given the ability to see through his challenges and see HIM, not his Down syndrome.  See him... my boy, with the shining blue eyes, not the infant who can't sit up or has his mouth open most of the time or can't catch up to his twin sister.  Him.  Wyatt. 

It's not a matter of walking around with the proverbial "rose coloured glasses" or acting like what one family member has always referred to as "Doris Day".  It's not walking blindly in the sun, oblivious of the consequences.  Having a positive outlook is about knowing about life's little pitfalls, about accepting them and moving on.  It's about allowing you the ability to enjoy life; I mean to really enjoy it.  To see William Blake's "heaven in a grain of sand...", to see the potential in something, to be able to see in my mind's eye, my twins chasing each other around in the back yard like I dreamed of while I was pregnant.  Wyatt looks a little different now, he's a little less agile than his sister and older brother, but he's there.  For the longest time I lost that little mental movie reel... happily I have found it again.  Instead of always being ready to fight, instead of always circling the wagons or assuming the stance or planning for disaster or whatever analogy you want to insert here, I'm approaching things a lot differently. My eyes are open, but so are my mind and my heart.

Negativity is like a cancer... it spreads, it metastasizes.  You can see it in the workplace; you can maybe see it in your own family.  The pain is there.  It does not go away.  It lingers and grows and eventually will wear down the strongest.  Every group has a "cheerleader"... after a while in a toxic environment; those pom-poms can seem awfully heavy.  Positivity is harder and it often isn't as fun.  It's hard to see the good in some things, it is difficult to maintain, but it too can spread, often like wildfire.  I was talking to my cousin about a link I had posted and she put forth the idea that in this day and age, people are so starved for good, for positivity, that they will react to the smallest amount.  We live in a world where sarcasm is the norm, where rejection is expected and when it doesn't occur, we end up in a momentary state of shock, unable to process what the hell just happened. That is sad.  In these darker days, people need informed hope.  People need a little ember to warm their hands by, they need a little light in the dark.

I've realized in the last little while that providing information and a story that people can relate to is not enough.  I'm a not-so-new-anymore new special needs parent; what I've learned so far is that in those early days after Wyatt's diagnosis (and then birth), I craved positivity.  I needed to hear that things were going to be ok.  That I would breathe again without hesitation.  That I would have my happy family with my three little ones.  That I was strong enough…  That I could walk the walk, as it were. That grieving was not "expected".  That the real stressors were given the credit they were due and not projected over to the condition.  I can.  I have.  I will.  I did.

My New Year's resolutions have always been a bit of a joke.  This year... well, my list has a few new items.  Yes, losing weight is still on there, as is taking better care of myself, being more organized... New to the list are Motivate and Support and Educate.  I've been trying to do a lot of this since May, but I am going to continue in the New Year and in the years to come.  Love is on the list, has always been on the list, but only as a lurker, the ever present servant in the background.  She's a feature player now, as is her sister Compassion.

You can never be sure what is around the corner, but there is no sense cowering and no sense plotting and planning yourself to death.  Sometimes things just happen.  A little chromosome here, a little hole in the heart there.  Two for the price of one.  Life, all of it.  It's just life... you just have to decide whether you are going to live it, or mourn it.  I choose to live it, for as long and as well as I can. 

Happy New Year to you, my gentle reader.  May this year bring you understanding, may it bring you joy.  May you too find your ember and may it warm your soul.

In the News - December 2011

Here are the links featured on Down Wit Dat's Facebook page for the month of December.  This time around, they are in order from oldest to newest.

Legend:
Ⓥ  indicates a video
Ⓐ  indicates an audio clip
Ⓟ  indicates photos
Ⓛ  indicates links or resource materials
Ⓑ  is for blog posts.

"One of them is my sib video contest"  Ⓥ

PTSD Concern for Parents of Premature Babies

Down Syndrome  Ⓥ

Helping Babies with Down Syndrome Develop Speech & Language   Ⓛ

My Kind of a Future Ⓛ

On the Use and Power of the Word Retard  Ⓑ

Down Syndrome Testing

A Chosen Child

Down Syndrome Actor Steps Up to the Mark in Groundbreaking New Play

An Apology from Your Child's Former Teacher

The Canadian Down Syndrome Society Annual Conference Ⓛ

Monica and David Ⓥ

December 10th is Human Rights Day

A Perfect Fit for Those with Down Syndrome Ⓛ

Signs of Sensory Processing Disorder

Jazzy Holman Doesn't Let Disability Stop Her

Hidden Angels:  American Families Saving Children with Down Syndrome Ⓥ

The 5 Stereotypes of Down Syndrome

Biologists Use Flies and Mice to get to the Heart of Down Syndrome 

New Findings Validate the Accuracy of Autism Diagnosis in Children with Down Syndrome 

Lung Function of Moderately Premature Babies is Reduced at 8-9 years but may Improve with Age.

Firefighters deliver labour of Love


Also published in December:


Speech Therapy for Infants with Down Syndrome Ⓛ

Atlantioaxial Instability in Down Syndrome Ⓛ


 If you find a cool link, don't hesitate to send it my way via email or our Facebook Page (don't forget to "like" it while you are there).  You can also follow us on Twitter @Down_Wit_Dat.

...and that's the news.

The Best of Times, The Worst of Times...

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way..." --Charles Dickens, A Tale of Two Cities 

 
This year has been all over the place for my family and I. It's been a roller coaster at times and mind-numbingly tedious at others.  Our life this year has had more twists and turns than your average goat path through the mountains.  It's beginnings were inauspicious enough;  2011 started, as many years do, quietly in my basement.  My OB had taken me off duty a few days earlier; instead of me greeting the New Year alone at work, we did so together, in front of a crackling fire.  My brother and his fiancée were visiting and the evening was filled with snacks and Rock Band and footage from Times Square.  It was probably one of the last "normal" evenings for us as I stuffed my face with mini beef wellingtons and patted my enormous belly.  A normal New Year's Eve, with kisses at midnight, phone calls to far away parents and the frost twinkling as our company crunched down the drive towards their waiting cab.  Normal.  Typical.  We put the leftovers away and went to bed shortly after 2.  After all, our son would be up and raring to go sometime after eight.

A few days later, nothing was normal.  My aunt had passed, a friend was critically hurt and my unborn son had a hole in his heart and likely had Down syndrome.  A week after that and I was lying awake on the futon in the future nursery writing (what would eventually be my first Down Wit Dat entry) in my head.  At first, it was a crie de coeur, an open letter to my family and friends, explaining what had happened and what had changed. It also put the unintelligible screaming in my head into words, ones that I did not yet dare speak aloud.  It worked... That "note" and the ones that followed helped keep my loved ones informed and kept me focused.  The writing was raw,  as rough and bleeding as the emotional wounds it described.

People began to contact me and ask for new updates.  As new information came forth about my son, it was easy to do so.  Once the babies were actually here, once they were home, it seemed to be a never ending parade of doctors appointments and things to do.  By the time that they had been home two months, Wyatt had gone to four doctors (two of them more than once) and Zoe had already had surgery on an inguinal hernia.  Each new thing was mind-wrackingly, gut-wrenchingly stressful, but we soldiered on.  I started putting my entries together into what would eventually become this blog.  The kids grew, they developed... eventually I tagged in my husband and I went back to work as he took over the house.  Here we are in December again... and where we are now seems so remote from last New Years Eve that it seems to have happened to some other family.

When you consider it as a whole, it does seem like a bunch of "bad luck", a string of negativity that would threaten to garrote the best of them.  One could look at our year that way.  It has been pretty painful in spots.

I however, refuse to.

To write off 2011 as "a difficult year" would be to negate all the positive outcomes as well.  After all, this was the year that we welcomed not just one, but two new members to our family band.  Two beautiful, personable, remarkably healthy babies who are completely nibble-able.   From their respective medical encounters has come a wealth of knowledge that we have gladly passed on to those that wanted it.  Through Wyatt and his "atypical"-ness, we have discovered much joy and learned to live, not task our way through every day.  We've gotten closer as a family and set free a lot of the emotional flotsam that has slowed us down.  We've learned the value of hope, the necessity of celebration.  We've learned how much we love, and how much we are loved.
 
That does not mean that we gloss over the tricky bits either.  Instead, we have embraced our "difficulties" and used it to fuel our endeavours. This blog for instance, and any and all education and outreach projects that have and will spring from it... would not exist if I did not experience this year in it's entirety.  My determination to make this process easier for the 'new parents' that come after me is a direct result of that.  Each new insight into how much work there is left to do helps me get out of bed in the morning.  Any anger, any pain that I may have regarding Wyatt, his health or how the world sees people like him is being re-channeled and reborn into dedication, purpose, even passion.

Early on I was confronted with a question:  if I could change Wyatt so that he no longer had Down syndrome, would I?  Then, when everything was fresh and new, I answered with an emphatic yes!  Now, the answer is much different.  I didn't want a "Down Syndrome baby".  Wyatt was Down syndrome in my mind, and it, he.  To me it was the end of the world.  Now, it is no longer the end of everything, but a beginning of a new thing.  My thinking has evolved.  If I could somehow change his genetic make up, I don't know that I still would.

But, even as I'm writing this, I ask myself why would I even bother at this point?  Yes, he could probably go on to med school.  Or not.  Maybe he'd be a star athlete... or not. The list of things that he could go on to be if he didn't have DS is a long one, for sure.  I know this as I listed them off to myself, one by one, once I found out that he had it.  He may not be a dashing surgeon or a brilliant psychiatrist, but he will also not know what it is like to work for an unforgiving public who only cares about what they think you should be doing for them, right now.  He may not be the star quarterback of his high school football team either, but he also won't know what it is like to blow a knee and be a washed up piece of meat at 18.  He will probably be subjected to ridicule and sadness at some point at the hands of some cruel, hate filled individual or even an ignorant one that "doesn't mean it that way".  Those may even happen at the hands of a person of authority.  As time has gone on in this year, my answer has changed a great deal;  instead of fearing the condition that makes the world a big bad place for him to be in, I want him to keep the unique perspective that DS will allow him to have that his brother and sister will not. 

We have no illusions of the future.  Maybe we are in a "bubble" of happiness right now, as my critics would contend, or not. Both my husband and I know that as time goes on, as his siblings develop into the adults they will become, Wyatt may be left behind at some point. We don't know when, or how or even "if".  As his features become more pronounced as he gets older, there will be probably be more isolation, less acceptance at the hands of his typical peers.  Or not. Perhaps our fears are as unfounded as our initial ones.  One can only hope.  If I have any impact at all, I will lessen that separation, even if only a little.

This year has been both the best of times and the worst of times.  So much good has come out of this year.  So much love, so much sharing, so much learning and so much acceptance. Some may say it's a matter of spin.  I would answer that it is a matter of new awareness and growing acceptance. This year may have been riddled with seemingly profound pain, but more importantly we have experienced profound growth.

Yes, our family was forced to fish much deeper water than most, but ah, the sights we have seen...  All from a little chromosome.  All from a little boy.  A little boy that has garnered the amount of enthusiasm generally saved for a Stanley Cup Win, simply for learning to hold his head steady.  For laughing.  For pulling himself into a sit.  Once.  Each new feat is as sweet as the monk's strawberry. You appreciate the effort, you delight in the simplicity, you savour the flavour.
 
These are indeed the best of times.  Yes.

Looks Like Down Syndrome

Even though I know that I am a biased mother, I still think my son is cute.  I think all my kids are cute, but Wyatt, the one that came with a little extra, is pretty damn cute. Sleeping, awake, serenading me with "Oooo", it doesn't matter.  Cute.

Lots of other people find him (and all my kids) cute.  I am constantly getting compliments.  Especially when they see Wyatt's big blue eyes and the Brushfield spots that form white lace around his pupils.  If they ask about his eyes, I will tell them, just as if they ask about something else that is unique to him.  Usually though, I just say thank you and smile.

Once I tell people that Wyatt has DS, there is usually a pause.  As I've said before, people just don't know what to say.  One of the most common things I hear is "well, he certainly doesn't look [like he has Down Syndrome].  This is the point where I often find myself at a loss as to what to say.  Do I say "well, he does sometimes" or "I know" or what?  Lately I've been scrolling through pictures when this occurs and I just keep going.  Yes it is more evident here, but not here.  But why is that?  How does that work?

Photography is a tricky thing.  Even with the most basic of cameras, a halfway decent photographer can change the look of a person just with a few simple changes.  Lighting.  Positioning.  Cropping.  Focus.  Throw in a little time on hair and makeup and there is a world of difference.  Throw in a little more time and have the model actually pose, and you are really getting somewhere.  All those pictures taken on the runway or the red carpet where the model has one leg in front of the other...  Do real people stand like that, or walk?  No.  It tricks the eye, making legs look longer and hips smaller and takes the eye away from a potentially wrinkly or pointy knee.  Want to know why you always look crappy in family holiday photos?  You probably were acting naturally.

I've discussed the most common physical manifestations of Down Syndrome before.  Wyatt has very few things on that list.  His head is shaped different, his face is flatter and his nose barely has a bridge.  He has epicanthal folds and as I mentioned earlier, Brushfield spots on his irises.  His hands and feet are "normal" in the sense that he does not have a simian crease or a sandal gap.  He doesn't seem to have shorter legs or arms, but he is still a baby and we will not know for a while.  His fingers look like any other baby's:  chubby, short and straight.  His nails grow twice as fast as his twin sister's.  Wyatt has hypotonia and his muscles are much weaker, which at this point is reflected in the twins weight:  although they are the same size, his muscular sister weighs over a pound more than he does.  He still has a hole in his heart.

What has erroneously been attributed to the "look" of Down Syndrome has often been described as "adenoidal", "slack" and even "slumped".  Rounded shoulders, open mouth, visible tongue, unfocused eyes.  Add epicanthal folds, smallish low placed ears and a weak bridge of the nose.  I remember being told as a child that this was due to them being "retarded";  over 35 years later I know this to be untrue.  It is a matter of posture, a matter of poorly developed muscles.  It is a matter of poor perception on our part.  What has been used as a broad description for so many, what has been touted as matter-of-fact is really a matter of needing a little physiotherapy.  It is not a determination of mental capacity or function.  Neither is an unfocused stare, which any child can exhibit from time to time, dependent on his or her level of engagement or interest in something.  I can well attest to this as I watch Wyatt's eyes bore into me like little blue lasers as I sing or talk to him. Hypotonia is not an indication of mental functioning.  Not.  Discriminating against someone for their lack of muscle tone or control makes as much sense as discriminating against a fish for their lack of feet.

Secondary to this is a disturbing trend that I have come across in my travels lately.  Yes, "the R word" is still popular in many circles.  I know those around me are changing their thinking;  whether it is out of respect for me, or for Wyatt or for their own shifting ideals, I cannot say.  What I can say is that what needed to be pointed out once, was then apologized for and is now self-corrected mid word (or gone completely).  I appreciate that.  This is not what is troubling me.  What is bothering me is the substitution of "Down Syndrome" to mean the same thing, to be used in the same place.  All you have to do is use "down syndrome" as a keyword search on Twitter to see what I am talking about.  Yes, my community peeps are there, taking the word back.  Keep scrolling and you will see a lot of what I am talking about.   Everything from "Got my new driver's license today. My picture is fantastic! I look like I have Down Syndrome" to "All kids with down syndrome look the same0.o, no matter what race they are." to "I'm dealin wit fuckin fucktards wit down syndrome!! I cnt do dis!! I'm annoyed 2 da MAX!!" ... and worse.  So much worse.

I can't change how people talk.  I can't change how ignorant some folk are. Some people, for one reason or another will always require a scapegoat or someone else to put down to make their narrow views look larger and to make themselves feel more special.  What I can point out, none too gently, is that once upon a time, that word or phrase could have been "gay".  It could have been many things, up to and including a word beginning with "N".  People forget that all too easily.  Play with those tweets, substitute your own slur of choice.  It isn't all that funny now, is it?

Using the R word or describing something as "Down Syndrome" other than the condition itself, no matter how benign in intent, hurts those who do not deserve it.  It is not funny.  It does not make you look clever.  Although you may not have "meant anything by it", others most certainly do.   When you use these words you are exposed for the ignorant, small minded soul that you really are.  Expand your mind and your vocabulary.  Do not create a safe haven for bigotry.

Wyatt will have many challenges in his life.  To be good parents, we will have to let him get dirty and fall down and scrape his knees.  I suffer no delusions regarding this.  As with any other child under the age of one, we will not know how well he will perform in school or his level of functioning overall.  What we do know is that we have a loving son, who lights up like a Christmas tree every time he sees one of us.  A son whose every accomplishment is later and more awkward than his twin sister's, yet is greeted with as much enthusiasm (and perhaps a little more in some cases).  He has Trisomy 21 or Down syndrome.  He has some features that are often expressed by an extra 21st chromosome.  It doesn't make him any less human, or any less deserving of love, of education or of respect.  He looks my husband and I... and at times, a lot like my Grandma Brown, oddly enough. He looks like Wyatt.  He looks like himself.  He looks like a little boy, full of mischief who only wishes to love and be loved.

Just like the rest of us.

In the News - November, 2011

I am always on the lookout for a good piece of news, especially when it comes to Down syndrome. 

As many of you know, Down Wit Dat has it's own page on Facebook.  On there I post things from all over the world that I think would be of interest in regards to Down syndrome.  Generally it is something that I think others might like to dialogue about...  In any event, I post a lot of links.

The other day, in typical Sean fashion, he casually mentions to me that "you post a lot of links" on the FB page and that I should be posting them here as well.  Ok, we'll give him credit for being right twice this year (the first was starting this blog in the first place).  After some careful thought, I've decided to do a monthly wrap up and feature all the stories that I have posted.  Welcome to "In the News", the first of these installments.

These are in order from newest to oldest (according to when I posted them).

Legend:
Ⓥ  indicates a video
Ⓐ  indicates an audio clip
Ⓟ  indicates photos
Ⓛ  indicates links or resource materials
Ⓑ  is for blog posts.


Down Syndrome Music Therapy  (Australia) Ⓐ

Alzheimer's:  Deep brain stimulation 'reverses' disease (UK)

Woman with Down Syndrome enjoys life through Art (Vietnam)

Downs:  The History of a Disability (Canada) Ⓐ

Smile that melts misconceptions:  How Taya, who was born with Down's, became darling of the modelling world (UK)

Man with Down's Syndrome ignored after he was detained in hospital and locked up before he died (UK)

Brain Scan identifies patterns of plaques and tangles in adults with Down Syndrome (USA)

Still Face Experiment (USA) Ⓥ

Local Girl wins national award for Most Beautiful Eyes contest (USA) Ⓥ

Dr. Allen Crocker, 85;  offered care and hope to children with Down Syndrome (USA)

A case that shames the Isle of Man (UK)

Study Finds Genes for Down Syndrome Heart Problems (USA) Ⓥ

The Simple Truths of Service:  Johnny the Bagger (USA) Ⓥ

The Specials (UK)

Indian artist with Down’s Syndrome raises funds for Vietnamese brethren (Vietnam)

Teacher and student become mother and daughter on National Adoption Day (USA)

Duo in Chicago:  Down Syndrome doesn't stop this athlete and her sister (USA) Ⓥ

The Queen's Hidden Cousins (UK) Ⓥ

Lauren Potter - The ABLE ACT (USA) Ⓥ

Glee's Lauren Potter Appointed to Obama's Disability Committee (USA)

What If... (Canada) Ⓑ

Advances in Down Syndrome Cognitive Research (USA)

Learning Disabled Actors to Star in TV's Shameless (UK)

Peipmeier, Cantrell:  Looking Anew at Down Syndrome (USA)

Final Touchdown, ultimate show of sportsmanship (USA) Ⓥ

Royal Winter Fair - Co-Op Program (Canada) Ⓟ

Down Syndrome Ability Awareness (USA) Ⓥ

Danangi's success story shows the way to other Down Syndrome children (Sri Lanka)

Boyfriends, Uggs and Vodka:  One mother's strikingly candid account of seeing a Down Syndrome child grow up (UK)

Jamie Foxx's Sister:  New Down Syndrome Ambassador (USA)

Special Needs Apps (USA) Ⓛ

My Brother has Down's Syndrome and I Love Him (USA) Ⓑ

...Shall We Dance? (India)

Parents of Children with Down Syndrome Speak Out (Ireland)

Down's Syndrome Boy's Mum asks:  When did it become comedy to laugh at kids like my son? (UK)


Park Ridge Hospital breaks ground on Down syndrome facility (USA)

Buddy Walk raises awareness of Down Syndrome (Canada) Ⓥ

Alex and Jollean (Canada)

Carly's Voice:  Changing the world of Autism (Canada) Ⓑ

Man with Down's syndrome becomes first to pass driving test (Ireland)

2012 Calendar (Scotland)

Down Syndrome Program (USA) Ⓛ

Sudbury Catholic Student Helping Others to "See The Ability" (Canada)

Parents hope treatment will 'given them back their little boy' (Ireland)

U. receives major grant to explore causes of Down Syndrome (USA)

Defeat Dementia in Down's Syndrome Study (UK)

Jamie Foxx on Caring for Sister with Down Syndrome:  'I don't call it a condition, I call it living' (USA)

Shifting Perspectives at the Dublin Arts Council (Ireland) Ⓥ

Down Syndrome Awareness Week (Canada)  Ⓥ



Down Wit Dat was featured this month:

 The Colour of Flowers:

"The Colour of Flowers "

... and on Moms Who Drink and Swear:

"Nik's Monthly Picks"


Whew.  That was a lot of links.  I hope December is just as productive.  If you find a cool link, don't hesitate to send it my way via email or our Facebook Page (don't forget to "like" it while you are there).  You can also follow us on Twitter @Down_Wit_Dat.

...and that's the news.

Baby Talk

You know you are getting older when time changes consistency.  When I was younger, time seemed to crawl. Summers were endless.  One night could seem like forever.  Time used to be denser, more viscous, stretching to an almost impossible degree like molasses from a spoon.  Now that I am older it seems to run through my fingers like water.

Lack of time, whether perceived or actual, is a common theme around here.  With three kids, two of which are under a year old, you can imagine how short the days really are.  In the course of those short days, the twins seem to be aging in front of my eyes.  What, over 9 months ago were tiny birds of human beings, so fragile and helpless, are now communicative, interactive and locomoting babies.  Each day brings new discoveries, new skills.  New conversations.

There was a point a few months ago where Zoe started to say "mumumumum" as she sucked in her bottom lip and looked all the world like a little old lady.  I took this as a victory of sorts as our eldest never said "mum" or "mama" until he was something like 18 months old.  His first purposeful words were early by some standards, around 7 or 8 months.  They were, in order of appearance,  "dada", "kitty" and "guitar".  Eventually he came up with a word for his dear old mum;  he called me "lady" for months.  You can imagine how happy I was to hear Zoe's "mumumum".  No matter how random, how unintentional, her first entry into the world of speech featured yours truly.  She said her first real word the other day.  It too was "dada", followed by "baba" which seems to mean her soother or a bottle.  When I came home and heard that she had said "dada", I wasn't about to take the wind out of hubby's sails.  "Mumumum" will always be enough for me.

Wyatt too is engaging in what they refer to as "canonical babbling" where there is a repetitive string of alternating consonants and vowels.  He tends to favor the letters r, l and a and has been doing it longer than his sister.  Like most people, I took that to mean that his speech was coming along right on schedule.  I have since learned that all babies, even those that are deaf and cannot hear themselves or those that are delayed for one reason or another engage in some form of canonical babbling.  This is not indication of future speech abilities.  I'm not going to let that bit ruin our enjoyment of it either as I am encouraging and repeating it back to him just as I have done with his siblings.  With him, it's different only in the sense that we throw in a sign once in a while (when we remember).  We do this for two reasons:  one, children with DS are visual learners and this makes it easier for him to associate.  The second reason is that children with DS are typically delayed in expression, not interpretation.  As any parent of a frustrated toddler can imagine, this can be a very difficult stage, one that can last much longer than with a typical child.  Since the neural pathways are the same for articulating a word or using a sign, teaching him sign language will assist in his self expression while helping him further develop the parts of his brain that control speech. 

The next stage, "variegated" or "mixed babbling" is something that I hear sporadically from him.  Instead of a repeated set of consonants and vowels, they mix it up and put two different sounds together.  As an example, instead of "gaga" we would have "wee-ga" or something similar.  Zoe is already all over this;  one day I took out her soother and she looked at me and said "Hi Bob".  As far as I know, girls develop in this area faster than boys do.  However, not to be outdone, Wyatt gets extra points as he manages to string together a whole variety of sounds, peppered liberally by "thhhhhpptttthhhh" noises.

The best part of all of this is that they take turns.  Instead of a house full of screaming/babbling/attention seeking infants, I have two that alternate.  This is awesome when they are upset (I've only had them both crying a handful of times) and even better when they "talk" to each other.  When they are close together, they touch or make a few sounds, but when across the room from each other (say, in their cribs or in the stroller) one will "ah-bah-blah-gaga" and then wait for the other to answer.  It is hilarious and priceless all at the same time.  It is wonderful to sit and listen one of them babble on the monitor, it is absolute magic to listen to both of them have some sort of "dialogue".   

They are also two of the most emotive babies I have ever seen.  This is a fabulous age as it is no longer a matter of "what that particular cry means" but rather what their face and body language are telling us.  Zoe is easy as she just starts doing what she wants.  She can get out of any three point harness, any time, anywhere.  Some babies fuss and lean and try and climb out after giving signals, she has one "tell" and then she is OUT.  Wyatt is a little more subtle.  He's a clever mimic (as is common in children with Down syndrome) and reaches out and touches things a lot.  You have to learn to read him in spots, but once you do, you realize how much he really is communicating with us. His smile is still infectious and can make even the worst days seem effortless.

We have definitely crossed over the threshold where we are no longer "talking at" the babies, but rather "talking to" and "talking with".  They both listen intently as they analyze your face and try to figure out what you are on about.  You can see it in their expression, you can see it in their attempts to answer back.  From Zoe's intense furrowed brow to Wyatt's "yuck" face (where he makes it very clear that he dislikes what food we've put in his mouth as he pushes it out with his tongue.  All that is missing is "why Momma?  Why?").  Whether verbal or non, they both have a lot to say.  It's a welcome change and a special place to be as we have so much to share with one another in the time that we have together.  Next it will be words, then sentences, then off to school...  This time too will slip through my fingers before I know it.  Down syndrome has taught us to cherish every step, every milestone, every moment.  Which we will do, even with something like this.  I've made a point of telling my kids how much I love them every single day.  They always tell me the same in return, even if it comes out "ah-bwah-gah".

Goals

On Wednesday, Wyatt and Zoe turned 9 months old.  It was an occasion marked by a few tears, some of which were from me.  It's hard to fathom, but they have officially been "outside" longer than they were "in".  Every day seems to be marked with some new discovery;  yesterday was Zoe's purposeful "Dada", while Wyatt turned his head and made eye contact with me when I called his name.  Both were equally magical, both were equally greeted with joy.  These moments are coming more rapidly as time marches on towards their first birthday.

As they change, our daily life changes.  We are still trying to find our stride with my return to work and our crazy schedules.  Every day has something going on it seems;  "humdrum" is hardly Sean's day in the Brave New World of the Logan household.  One way or another, it eventually gets done.  Even if whatever it is has to wait a week to be done on my days off, it gets done.  My house always seems to have that shaken, not stirred look about it; toys, shoes and bits of clothing (usually socks) strewn about, dishes (gah!) everywhere and piles of used bibs on the kitchen table.  Then there is the laundry.... oooh the laundry!  I plan to spend two days next week to do it all up.  Consecutively.  Without pause, except to feed myself, the children and use the bathroom.  I'm still not sure that will be enough time. 

It's hard to sometimes, but to get anywhere, we have to set goals.  However well meaning, however lofty, however completely batsh☠t insane, we have to at least try.  We simply have too much going on not to.  It's what I think of as Newton's Laws of Parenting:  each new skill they develop, each little nuance they perfect has an equal and opposite reaction from us. Intersecting nicely to this is Murphy's Law, which usually ensures we are scrambling around at the last minute trying to baby proof and avert disaster in general.

One of the latest things has been Zoe's mobility.  We are constantly trying to adapt to our little girl and her astounding (to us) physical prowess.  She is now slowly crawling on her hands and knees (but is still lightning fast on her belly).  She pulls herself up, sits and I have caught her taking a few tentative steps as she held onto the edge of the coffee table.  Last night I buckled them both in their swings and closed the gate, leaving them in the living room as I headed upstairs to get ready for work (my 5 year old was in the room and my husband was in the next room and checking on them every few minutes).  As I was getting dressed all I heard was "Hon?  Did you leave them both in the swings?"  Puzzled, I answered "Yes?", to be told "Well, they aren't now".  I flew downstairs, pulling my T-shirt on as I went, to find that Zoe had wiggled out of her swing and was trying to crawl into Wyatt's lap (who thought this was all hilarious).  It was a little freaky to say the least, especially as both swings were still moving.  Keeping her safe is going to be a big challenge, especially after the gate fiasco of last week:  the extra long gate that we had purchased almost fell on her and my eldest. Somehow in the process of me trying to catch it, I slipped, half fell and managed to step on her little hand.  She was fine, I was fine (eventually!) but that particular gate went back the next day in exchange for a wooden one that is bolted to the wall.  The first morning I shut the new gate, ran upstairs to grab something and came down to a little face squished against the wooden rails pleading for release.  So far then,  it is working just fine.

Wyatt's OT came out last week as well and did a little assessment on his progress.  He is pushing himself up on his hands occasionally and has added a little bit of pivoting on his stomach. He has managed a maximum of 90 degrees thus far.  He has also rolled over and over (uni-directionally and slowly) and in doing so has moved across the middle of the living room floor.  Our days of him staying put are rapidly coming to a close as well. With our current regimen of positioning and small resistance exercises, we hope to accomplish a few more goals with Wyatt:  sitting, pivoting 180 degrees, rolling to both sides and more developing more control with his upper body in preparation for crawling.  Vocally he seems to be just about right as he carefully imitates our sounds and expresses himself more freely with both his voice and his affect.  There is no time limit on these objectives.  Like just about everything with our little guy, they will be met in their own time.

I don't know about your school, but there is a ton of paperwork that comes home and lots of things that we have to sign and send money back for.  Milk.  Book fairs.  Fundraising.  It never seems to end.  To try and keep this organized, we have two (pretty) bulletin boards in the kitchen.  One is for my son's stellar artwork, the other is for all the papers from school.  Last week, we were trying to get an idea of how much money I had to go take out of the machine in order to send it with him.  As we were adding up our list, my husband adds "...and $15 bucks for their trip" and hands me a blue sheet that he had found.  Once again it seemed they were going to the Living Arts Centre for a theatrical presentation of some kind.  I tacked it up on the board and forgot about it as we were promptly distracted by other things.  The next morning I was gathering up things to send back to the school and could not find the permission slip portion of the trip paper.  I had the front sheet with the staple hole in it where the permission page had obviously been joined at some point, but not now.  I looked everywhere, but with bus time rapidly approaching, I quickly scribbled off the following note to his teacher:

"Dear ____,
We seem to have misplaced the permission slip for the upcoming trip to the Living Arts Centre.  Could you please send another one so that Quinn does not miss out? 
Thank you in advance,
Jen (Mrs.  Logan)"

That day I got a note back:

"Dear Mrs. Logan
Thank you for the note.  I am not sure what I should be sending home as we do not have an upcoming trip.  
Thanks, ____"

 Confused, I looked at the trip letter.  It was dated 2010. 

Facepalm.

Luckily, hubby had the parent-teacher interview the next day, not me. 

There are a lot of little niggling things that need addressing here and there... from little house repairs to putting up the Christmas lights to spending more one on one time with my eldest.  Little goals that range in importance from meh to good idea to absolutely. As you may have guessed, there is very little me time in there, except for what I carve out for myself on the computer or in the bathtub.  Getting more sleep is certainly on my list of well meaning tasks for myself.  The joke there is that it has been at the top of my list for over 10 years now.  I used to have terrible insomnia.  I would toss and turn and be unable to settle to sleep, unless I was completely exhausted or medicated.  Then I would only sleep for a few hours before waking up again.  Thanks to the kids, that is no longer the case. I can sleep anywhere, anytime... it really doesn't matter.  If I sit still for more than 10 minutes, I am out whether I like it or not.  I've gone from having bouts of mind numbing insomnia to narcoleptic fits.   That's where the Newton's Laws of Parenting (bisected by Murphy's Law) come in again.  The more likely I am to fall asleep, the more likely one of my kids is to start crying and needing attention.  It never fails.  You could set your watch to it.

Our goals generally walk that razor's edge between reality and way the hell out there.  Getting through some weeks is like trying to assemble a giant jigsaw puzzle where the pieces keep changing shape and you have to use your toes.  It's next to impossible some days, where others seem childishly simple.  I'm still trying to come up with an answer to "I don't know how you do it".    I have yet to figure that one out, but I think goal setting has a lot to do with it.  The trick to that is to let it flow.  We try not to get too rigid as that will only raise our anxiety level and make our house an unhappy one.  Instead, we dial it back a bit and get the most important things done.  Trying to outthink the little buggers is also exhausting so we try and stay a little bit ahead so that everything is as easy as possible.  It works with things like baby food, not so much with the clean clothes.  As a result, the house is a mess, but dinner is in the crock pot.  The children are dressed properly and clean, we are generally not.  I may not have the whole Monday is library day and the milk money has to be back Thursday which is the same day as "Sharing" (show and tell), but dammit, one or two or all of us are at the bus stop twice a day and on time.  We're also a funny, happy, silly bunch that genuinely love one another. That goal, at least, we seem to have met without a problem.

Making the Best of the Worst Case Scenario

I've been putting off this post for a few days now.  I'm pretty sure it's the subject matter. (It would have to be.  What else would drive me to cleaning instead?)  Not only does financial stuff, as a rule, make me want to stick a pen in my eye, but I'm not very keen about thinking about my own death either. However, when you have children, these things have to be thought about and planned for.  Normally you think in terms of a child reaching the age of majority, providing for schooling and then hoping for the best if they have to strike out without you after that.  You hope that whatever time you had with them will prepare them for life.  What if that child has a learning disability?  What if that child has Down syndrome?

Recently my husband was able to attend a Will and Estate planning session that was tailored specifically for parents of children with Down syndrome.  I was unable to attend, however I did get the crib notes version and the literature to peruse.  Of course, I then started poking around to see what I could come up with.

I won't go into too many specifics as it will depend on the laws of your area, but there are a few subjects that seem universal and should be considered by parents of children with Down syndrome.  One of the first major hurdles, at least for me, was to appreciate that we don't know how independent Wyatt will be at this point.   It is also too much for me to assume that he will live with one of his siblings.  It is a nice thought and I would hope that would be the case, but it realistically may not be possible (due to schooling or specific needs or even Wyatt's desire for independence).

I had a lot of questions.  Who would look after Wyatt?  Who would pay for his housing, clothing, medical expenses, things that affect his day to day life?  How would this impact any government funding if he would need it?  Luckily, these sort of things have been addressed and are pretty much a matter of routine.

Unlike your average trust fund which turns into assets at a certain age or when certain criteria are met, many countries have created trust funds specifically for people with special needs.  These trusts will allow the beneficiaries to continue to live with dignity, yet not be burdened with the administrative aspects.  A trustee is appointed;  that person or organization would see that the monies are dispersed as needed.  

There is some government funding for adults with learning disabilities, at least here in North America, which is mostly income based.  As the person themselves do not have access to their trust, it is not considered income and therefore does not disqualify them from receiving funding.  Here in Canada we have a few options, including  RDSPs and a "Henson Trust" which is an absolute discretionary trust, where you can dictate all the specifics of how and when the money is applied.   You also may want to consider options that deal with money coming in from outside sources (such as family, interest, donations, that sort of thing).  Many grandparents like to set up bank accounts for their grandchildren;  even something as well meaning as this might interfere with funding and be considered as assets.  Instead, suggest to well wishers to contribute to an RDSP in the child's name.  As a side note, unlike RRSPs and RESPs, a RDSP's funds are not totally taxed when they are dispersed upon maturity.  Only any growth and government contributions are taxed and at a lower rate.  There are also things such as pensions and life insurance policies to consider, where naming a child with a disability as a beneficiary would actually work as a disadvantage.  Instead, one would name the trust fund as a beneficiary.  It would be a shame to lose well intended (and possibly much needed) funds to taxes and the like. 

Flexibility seems to be a common theme as well.  With this type of trust, you can dictate how to proceed for almost any possible scenario that you can think of.  In the event that your special need child passes away prematurely, where do the funds go?  What if your child marries? Divorces?  Is outlived by their spouse?  These questions (and a million more) can easily be addressed by an absolute discretionary trust (or Special Needs Trust for our American friends).

I'm not a financial expert and don't ever plan to be. I will however, allow those that are to figure out how to do what I want to do with Wyatt's financial future.  There are people that specialize in Disability Law and I encourage everyone to seek them out.  I am also not wealthy by any stretch of the imagination. I was very relieved to learn that it was a matter of routine to set up safety nets for my son that were independent of how much money I was making and not that much different from the considerations I would make for my other two children. I was also happy to learn that this wasn't something that I should have been doing already, it is something that I can start at any time. It is comforting to know that when I am no longer here, Wyatt's needs will be met.  Don't get me wrong, I plan on being around a long, long time.  If I'm not tho', all my kids will be looked after.  This was one of the nagging things that haunted me after he was born;  thanks to this information, (if you can pardon the horrible pun) I can finally lay this one to rest.

See the Ability

Recently we were at the pediatrician for the twins check up.  Now that Sean is on paternity leave, the whole process is a lot easier, but we still have to bumble in, check in with the secretary, navigate the stroller through a narrow hall and door, get them out of the stroller and strip them down in preparation of the great weigh in.  It's hard not to feel like a circus ringmaster as we take babies out of our clown car of a stroller.  This one is wiggling, this one is crying, this one is trying to roll away while this one is busy pulling faces and charming the heck out of everyone.  Oh look.  This one pooped.

This visit was no different.  The great weigh-in found Zoe tipping the scales at a muscular 14.5 lbs while Wyatt was just over 13 lbs.  The are about the same size (Zoe is a tiny bit longer) and both have the same head circumference.  The weight differential can totally be attributed to the hypotonia;  Wyatt has weaker muscles which causes him to move less, which causes him to have less lean muscle mass (which is heavier than fat).  Both are continuing along their own prospective growth curves:  Zoe is in the 5th to 10th percentile while Wyatt is in the 25th percentile on the Down Syndrome Growth Charts.  At six weeks corrected (giving them a "developmental age" of 6.5 months at the time of the appointment), the pediatrician was amazed to see Zoe pull herself to a stand, fall into a sitting position, sit unassisted and have a mixture of rolling/crawling/army crawling.  Wyatt is just Wyatt:  he is still working on pushing himself up whilst on his tummy and he has added a small amount of pivoting.

The gulf between them is starting to be noticeable.  Although some well meaning family members (that obviously don't read this blog) tried to "warn me that this day would come" (?!), we aren't saddened by it as they predicted.  Yes, Zoe is a superstar.  No one has told her that she is ahead of the curve for a 6 week premature baby (and I'm not of the mind to change that either).  Wyatt is progressing at his own rate that is unique to him.  That is the nature of Down syndrome.

After they were born and we had proof positive that Wyatt had DS (his karyotype), I was talking to a friend and answering a question about Wyatt and was listing off a variety of things that he "couldn't" or "wouldn't" be able to do.  Wise woman that she is, my friend fired back with "Yes, and Zoe won't be an athlete at the Special Olympics either".  She is right.  There is a list of things that Wyatt won't/can't/shouldn't be able to do, but that is not what is important here.  It is what he CAN do that is important.  I don't think my friend realizes what a pivotal moment in my thinking that one little quip was, but it was.  You have to see beyond the diagnosis (and that is what it is... a diagnosis, not a disease, not an affliction, not something to be suffered) and see the person. We do this with our "typical" children instinctively;  if little Johnny shows an interest in music or sports we sign them up for lessons or a team (or hopefully both).  If our children show an ability in writing or drawing, we encourage this.  Maybe they can be the next Pulizer Prize winner... maybe they will be the next Michalangelo.  Maybe they won't.  But, we see the potential.  We see the ability.  It's the same thing with children with Down syndrome.  You have to see past the diagnosis and accept the person.

This week, from November 1st to 7th is National Down Syndrome Awareness Week in Canada.  This year, the Canadian Down Syndrome Society is encouraging everyone to "See the Ability", to look beyond Down Syndrome and see the person, not the genes.  That's a philosophy that we can easily embrace, as we have been doing it all along. 

We see Wyatt's ability.  His ability to make us laugh, to be the loveable huggable little fella that he is and the wonderful man he will become.  We hope that one day, not too long from now, everyone else will be able to see it too.


You can learn more about National Down Syndrome Awareness Week on the CDSS website,  "like" the Facebook page and follow them on Twitter @CdnDownSyndrome. 

Challenges

We did it!

I still can't believe it, but I managed to get through 31 days of blogging.  It's been cathartic, it's been educational.  It's been unbelievable.

It's been exhausting... and totally worth it.

In October, my blog has had visitors from The United States, Canada, The United Kingdom, Ireland, Australia, Brazil, Slovakia, Ukraine, Russia, Germany, South Africa, Poland, India, Thailand, China, The Netherlands, France, Sweden, New Zealand, Denmark, Italy, Switzerland, Moldova, Singapore and Latvia.

My voice has carried farther than I could ever have dreamed.  I hope you all found something interesting, informative or that helped you in some way.

As a little recap (and a handy reference guide) here is the month in total:

Special Entries	Family Day Sunday
1   - Happy DS Awareness Month 31 - Happy Hallowe'en!	2   - Life Without DS 9   - Welcome to the Family 16 - Day of Rest? 23 - Be Gentle 30 - I Wish I'd Known
Medical Monday	Teaching Tuesdays
3   - Eye Problems Frequently Experienced ... 10 - Types of Down Syndrome 17 - Hearing Complications with DS 24 - Altantoaxial Instability	4   - Physical Features of Down Syndrome 11 - A Brief History of Down Syndrome, Part 1 18 - A Brief History of Down Syndrome, Part 2 25 - Down Syndrome and the Developing Child
Wyatt (and Zoe) Wednesday	Therapy Thursday
5   - Wednesday with Wyatt 12 - "Wy" Not? 19 - At Home with Wyatt and Zoe 26 - Group Hug	6   - Heal Thyself 13 - Learn to Speak "Therapist" in a Few ... 20 - ...Shaping Up 27 - Speak to Me
Factoid Friday	Story Time Saturday
7   - Just the Facts, Ma'am! Welcome ... 14 - ...Perceptions of Down Syndrome 21 - ...7 Good Reasons to Breastfeed... 28 - Conditions Concurrent with DS	8   - Homecoming 15 - Birth Stories 23 - Just Like Us 29 - Down Syndrome Advocate, Albert Pujols

Before I forget (which happens more than I care to admit) I would be completely remiss if I didn't thank a few people for helping this month be a success and to help me get my voice heard...

First of all, thanks to Nicole Kane Knepper for featuring me on her blog, Moms Who Drink and Swear and for her tweets and shares of my entries.  You could tell when she did something as my hit counter would have a seizure.  Through her, so many more people have found and connected with us.  Many are not of the DS community, but have found something here that has resonated with them.  Nikki, thank you.

Thank you to Ginger Greenleaf Caballero from Counting Caballeros for her tireless "pimping" efforts of DwD.  She too has helped expose me to more people that would probably not have read this otherwise.  Ginger, thank you.

Thank you to all that took the time to Retweet, +1, "Up", or share my entries... to make a comment, send me an email or PM me on Facebook.  I cannot properly express how much this support has meant to me. 

To my friends and family, thank you for your patience, understanding and support.  Thank you for understanding why this was important to me and cheering me on.

Finally, to my husband.  Thank you for your patience and understanding and your occasional proof reading and grammatical skills.  Thank you for being such a wonderful husband and father to our children.

Today is also the beginning of Down Syndrome Awareness Week (November 1-7) here in Canada.  I will be returning to my usual schedule after today.  However, that will not stop the updates on DwD's Facebook Page, or my tweets (@Down_Wit_Dat);  I will continue to share stories that inform and inspire.  I will also openly challenge my home and native land to make Down Syndrome Awareness Month.  May I suggest October or March?

Through the 31 for 21 I have challenged myself mentally, creatively and even physically.  Now, it is time to pass the challenge on. I challenge all of you to make a difference.  Educate one person.  Just one.  Call someone on the use of the "R" word and explain how something that may seem so innocent to some can hurt people that surely don't deserve it.  Explain that hypotonia and speech impediments do not dictate intellect.  Help the friends and family of a newly diagnosed infant as they struggle through the first days.  Support local organizations that help people live independently and with dignity.  Educate your children and encourage inclusion.  Help wipe out ignorance, help wipe out fear.  Be the light in the dark... for one person.  If everyone reading this today does that, we will have already changed a little bit of the world in over 25 countries.  If those people challenge at least one person...  A world where Wyatt can reach for whatever star he chooses might actually be around the corner. 

The possibilities are endless.  Our adventures continue...  One challenge at a time.

Happy Hallowe'en!

I'm going to forgo Medical Monday this week (I think I made up for it on Friday) and instead have "Mommy Monday".

Instead of a paper on Atrioventricular Septal Defect today, I'm going to instead post squeeful Hallowe'en pics of my twins.

Happy Hallowe'en!

Pumpykin Wyatt

I am NOT wearing this hat!

Pumpykins

Pweeze don't make me wear it

Wyatt

Zoe Kitty... sans hat

Twins

I am THE STAR of this pic!

Sad Pumpykins

Sweepy Pumpykins.  Night night.

I Wish I'd Known

Sadly, receiving the news that your child has Down syndrome often fills parents with dread.  Almost every parent of a child with DS that I have talked to since we received Wyatt's diagnosis has mentioned that time, that dark time when you don't know what to expect and you don't know what to do.  I wish it didn't have to be that way.

At the time, I was literally at war with myself.  I knew it wasn't a death sentence... I knew that it wasn't the worst case scenario.  I had more information than most, being an RN.  All that meant nothing.  All my knowledge and experience went right out the window.  Despite knowing the contrary, I felt that I had failed, that this was somehow my fault.  This was one more thing that I had f☠cked up.  Somehow I deserved this.  I was embarrassed; I felt ashamed.  I wished that I could reach into him and pull it out whatever it was that made him that way so that he wouldn't be that way any more.  My mental image of two perfect twins smiling in the stroller with the cute outfits that my family had given me was gone.  Shattered when the neonatologist shuffled over to us in the OR and carefully cleared his throat.

I've talked about that time briefly before... touched on it, roughed up the surface a bit.  I described how I would suck up the pain, the exhaustion and head to the hospital and do what I had to do.  The crying would come whether I wanted it to or not.  In the shower.  In the cafeteria.  Holding my son while he slept as the NG tube delivered my milk to his tiny tummy.  What I haven't described is how I watched his "upside down" AVSD altered rhythm on the ECG for hours, side by side with my daughter's normal one.  I imagined in three months time, turning him over to the surgeons and getting him back intubated, with a big wound on his chest.  When I was dressing him, I imagined him with a scar and it terrified me. I would trace my finger down his tiny sternum as I reattached his leads after his bath and I wouldn't know I was crying until the tears splashed his chest.  Sadly, what was really fear from lack of proper information, the post-partum blues, accepting his heart diagnosis and dealing with NICU anxiety, was projected onto Wyatt's extra chromosome.  It's unfair, but it happens all the time.

It's not like I didn't have support either.  Most of our family and friends have been wonderful.  My colleagues and the staff were wonderful, even if they didn't always know what to say.  However, as I've said before, I did not know or know of anyone with Down syndrome.  There was a lot of empathy, but little knowledge and no shared experience.  Despite all the well meaning people, I was in a dark, isolated, hopeless place, projecting all over my newborn son.

Once I had started gaining insight, once I had started learning a bit more and had made contact with others in my place (and began self-educating) that darkness began to ebb.  I joke at work that we shine lights into dark places. It was like that for me as little by little, candle by candle, my world began to brighten as I absorbed more and more about DS.  I got to know my little boy in that time too.  I got to know his little baby moods, his vocalizations, his smell.  His routines and his likes and dislikes.  The little things I could do to make things better for him, from extra burping to ensuring there was always something on his little blue feet.

I have since healed, I have moved on.  Time and knowledge have healed my wounds and refocused my energies in a more positive direction.  It hasn't always been easy, but we are here.  One of the reasons that I started this was that I never wanted anyone to feel like I had again.  Never.  If I could reach out to one more mother residing in that dark place, I would.  If I could help fast track someone from those early horrible days to where I am now, I most certainly would. 

A few days after the babies were born I was wandering around in one of the rooms the NICU has for parents.  On one of the shelves was a book of poetry written by parents of very sick and often terminally ill babies.  It was meant to provide comfort.  I found it ghoulish and after reading a few words, I shut it up and threw it back on the shelf with disgust.  A few weeks later I stumbled across this publication and hoped that one day (hopefully soon) I could feel like this too.  It is called "What Parents Wish They'd Known". As time went on, these words became more and more fathomable.  One day, not so long ago, I read it again and realized that I had arrived at a new place, where these words are reality and not some distant dream.

Now, when I read it, I wish I could go back in time and seek out that Mom in the NICU watching the monitors as the tears fell.  I wish I could go back and let myself know that it was going to be okay.  Although it felt then that my own heart had stopped, I wish I could be able to tell my then self that it would start again.  I would eventually exhale and everything was going to be fine.

I want to be able to reach out to new parents and let them know it will be okay.  If the information I have given in the course of this blog has not been a strong enough safety line, if my voice has not been loud enough to echo-locate, then allow me to share more voices.  Hopefully together we will be loud enough.

I wish I'd known the stands would erupt with cheers when she got a hit in baseball, and that her classmates would circle around her with love and protection if anyone was mean to her. I wish I'd known that "being slow" would mean savoring every step, every puddle, every blossom. --Michelle, mom to Ciarra (9 years)	I wish I’d known that it was ok to grieve and scream, cry, vent and be angry. I wish that a facility or network had been in place to reach out to me, instead of the other way around. I wish that every parent coming home today could see my girl and how she smiles and loves. --Amy, mom to Larkin (2 ½ years)
I wish I’d known that this would be such a marvelous journey, and that everything would turn out . . . JUST FINE. --Jackie, mom to Emily (28 years)	I wish that I had known that my broken heart would one day heal, and the love that I felt for my son was the cure. --Kristy, Mommy to Zachary John (3 years)
I wish I’d known I would look Avery and NOT see Down syndrome. I see her as this amazing, smart little cookie—strong-willed, self reliant, and cute as a button.  She walks around like a little queen in a parade, waving, hugging, and talking to everyone. --Kathleen, mother to Avery (3 years)	I wish I’d known I was strong. My husband and I always thought we were the people who couldn't handle raising a child with Down syndrome. Actually,there’s really nothing to “handle.” --Stephanie, mom to Megan (4 years)
I wish I’d known the pure joy, happiness, pride, love, and dedication that my baby would show us all. I wish someone would have told me that this baby was going to change my outlook on life, make me a better mother to his siblings, a better wife to his daddy and a better person to this world. --Carmen, mom to Jaemen (3 years)	I wish I'd known that my son would develop a personality like any other child.  I spent so much time wishing his babyhood away wanting to know what he was going to be like. I wish I had relaxed and enjoyed the sweet baby I had. --Ann, mom to John (5 years) 1

Finally...

I wish I'd known that we would be okay, that we would overcome all the obstacles together as a family.  I wish I had known that there were thousands of mothers like me out there and that we all have felt this way at one time or another. I wish that I would have known that I would see him as "having" Down syndrome, not "being" Down syndrome and then not really caring about it at all.  I wish I had known then what an adorable, funny little guy he would be.  I wish I had known that his smile would wipe away any 12 hour work day and that his laughter would be like music.  I wish I had known that despite all the testing that his heart would stabilize, he would not sicken like they predicted and that his surgery could be postponed until he was a toddler.  I wish that I had known that he would be the sweetest baby on earth.  I wish I had known all of this then, so I could have enjoyed that time together.  I wish... I wish that I had known that he and his twin sister were exactly what we needed. 
--Jen, Mom to Wyatt (8 mos).

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 ¹ Excerpts from "What Parents Wish They'd Known",  Copyright © 2008 The Segullah Group, Inc)

Down Syndrome Advocate, Albert Pujols

Most professional athletes are involved in some kind of charity work.  Some have a pet cause, some jump on the most current bandwagon. 

Then, there is Albert Pujols.

Aside from being counted (by some) as being in the top 10 ball players of all time, aside from just winning the World Series with his team the St. Louis Cardinals, aside from playing and living clean, aside from being a husband and father of four, Albert is a humanitarian.

His eldest daughter, Isabella, has Down Syndrome.  She has been the inspiration behind the Pujols Family Foundation.

Among their lengthy list of accomplishments, The Pujols Family Foundation promotes awareness and assists families and people living with Down Syndrome.  It also sponsors events, such as an annual prom for those living with DS.  The Down Syndrome Association of St. Louis was given the means to open its doors and hire staff from the foundation. The Albert Pujols Wellness Center for Adults with Down Syndrome was opened by them in Chesterfield, Missouri in 2009. 

60 Mintues did a story on him not to long ago.

There is also an accompanying article, Albert Pujols: A superstar on and off the field. 

I have been saving this for today, the last Story Time Saturday of the 31 for 21 Challenge.  It is a fabulous story of one man and his tireless efforts to aid and give voice to those who need it.  He is an inspiration to many and living proof that you can make a difference, one person at a time.

Conditions Concurrent with Down Syndrome

People with Down Syndrome can have a variety of medical issues.  Previously we have explored Eye and Ear problems, Atlantoaxial Instability and mentioned cardiac and bowel conditions.  We have also looked at some of the more common physical features of Down Syndrome.  As this is our last Factoid Friday (for a while...), here are additional medical concerns that can commonly occur with Down Syndrome.  It is important to note that none of these conditions are exclusive to DS;  these exist in the greater community all on their own.  However, they are listed here as there is a slightly higher incidence among people with Trisomy 21.

Cardiac

• Atrioventricular Septal Defect
• Ventricular Septal Defect
• Atrial Septal Defect

Dental

• Reduced oral cavity
• Late and unusual teeth
• Macroglossia
• Tongue fissures
• Periodontal disease

Dermatological

• Soft velvet skin as infants, becoming dry and course as they get older (xerosis)
• Atopic dermatitis
• Alopecia areata
• Alopecia totalis
• Alopecia universalis
• Acrocyanosis
• Cutis marmorata
• Chelitis
• Seborrhea
• Hyperkeratosis
• Syringomas
• Elastosis perforans serpiginosa
• Vitiligo
• Acanthosis nigricans
• Folliculitis
• Scabies

Endocrine

• Hypothyroidism
• Hyperthyroidism
• Hypopituitarism
• Type I and II Diabetes

Gastrointestinal

• Aganglionic megacolon (Hirschprung's Disease)
• Annular pancreas
• Duodenal atresia
• Duodenal stenosis
• Imperforate anus
• Tracheoesophageal fistula
• Pyloric stenosis
• Esophageal motility disorders 
• Gastroesophageal reflux
• Malabsorption disorders including celiac disease

Hematological

• Transient Leukemia
• Leukemia
• Thrombocytopenia
• Thrombocytosis

Neurological

• Epilepsy
• Alzheimer's Disease

Orthopedic

• Scoliosis
• Joint dislocation
• Hip and knee instability
• Weak ankles
• Foot problems

Respiratory

• Risk for respiratory infections
• Risk for aspiration pneumonia
• Sleep apnea

Although this list is long and seemingly scary, it really isn't.  Most people with Down syndrome only have a few random things on this list (some of which are temporary conditions).  Even the most severe ones (such as AVSD) can be managed surgically and very successfully.

And that's the facts, Jack.  Happy Friday.