On Motherhood

This Sunday is Mother's Day. Although it is celebrated on different days all around the world, most cultures set aside a day to appreciate our Mothers and all that they do for us. Sunday morning will probably see my news feed awash with photos of homemade cards, breakfasts in bed and flowers, some of which, undoubtedly picked by tiny fingers (and quite possibly from the neighbour's garden). It's a day of emotion for most, of remembrance for some and celebration for many.

It is such a powerful word, "Mother".  It invokes many of its permutations, from the sacred to the profane, all of which is dictated by our life experiences.  The word, this title, means so much to so many people.  As a culture, we like adding little specialty titles too:  "Working Mom", "Blogging Mom", "Stay-At-Home" Mom,  even "Absentee Mom".  There is also "Special Needs Mom", but we will get to that one later.

Becoming a "Mother", for me, was life changing. Gone was the egocentricity, the partying, the sense of entitlement. It wasn't just about me any more, it was about this little person. This new sense of "us". Instead of two people in orbit around each other, we were now three, a cohesive unit. It was wonderful and terrifying all at once. Previous to this, I had spent countless hours at the gym, the salon, the nail salon and the mall, shopping for new clothes and new ways to combat my 'age'. I needed to look better, was the thought, to look more like the ideal and inflate what I recognize now as an appalling lack of self-confidence. I spent countless dollars at the liquor store too, trying to soothe myself after the rest of it 'didn't work'. I am one of those people that motherhood changed for the better. I will admit that wholeheartedly and face any criticism that may generate.

After a rough entrance into this world, my son had a mother.  Me.  I was somebody's Mother. (Eek!)

I entered a second phase after my year of maternity leave as I returned to work.  As a "Working Mom", I was supposed to have it all:  a faboo job, a clean house, carefully scheduled play dates and homemade banana bread cooling on the counter.  I did too... well, most of it.  My house, like most, has stages of 'clean'.  However, I still baked the banana bread, I still sat down every day with my son and went through his day and did activities together.

Flash a few years in the future as I have my twins.  Becoming a mother this time meant a whole lot more things.  There were more labels.  Now I was a "Twin Mom" and most notably, a "Special Needs Mom".  It can be a bit confusing at times as the first title usually makes people squeal with glee.  The second one usually elicits a completely different reaction.

Stupid human tricks aside, it's the last one that has caused the most growth and simultaneous heartache/joy.  To be clear, it's not my son that causes me heartache as my critics would contend;  it's society as a whole. I'm not just talking thoughtless vocabulary choices as there are still a lot of people out there who don't have the foggiest idea what 'special needs' are.  In my example, I have a son, a twin, who has Down Syndrome, the most common genetic disorder that occurs in 1:700 live births.  You would think people would know a little more about it.  Instead, I find myself railing against a public perception that is somewhere between 40 and 80 years out of date.  There is a lot of ignorance out there, ranging from being told that my son will break apart my family or should have been aborted, to more milder forms, usually involving a "I didn't mean it that way" or "you're too sensitive". 

I read an article the other day that certainly captured most of it.  Called "7 Things You Don't Know About a Special Needs Parent", it hits the mark on a few points.  Please understand, these are not things that we experience every day, or feel all the time.  But, we will run into all 7 of these things at least once in our lives.  It happens.  I don't begrudge my friends with neurotypical children their pride at their children's accomplishments;  I will admit an occasional pang when listening to a laundry list of some of the more inconvenient aspects of their child's behaviour.  Again, it happens.

Becoming a "Special Needs Mom" can sometimes mean a whole new level of advocacy.   I've joked in the past that this job came with a sword and magic helmet, along with the ass kicking boots that come standard issue with being a "Typical Mom". My thoughts right now are with my friend M who is fighting with an area school board to allow her son admission in the fall.  She has been told that he is "too small", that they do not "encourage sign language", that they "don't have children with Down Syndrome".  It is completely appalling as M lives in the next county, forty minutes up the street from me.  My elder son has had a special needs child in his class both years of kindergarten;  there are many integrated special needs children in his school.  It is not a 'special' school or a trial school, just your average neighbourhood elementary.  It is pathetic that a forty minute drive can mean the difference between acceptance and complete ignorance. 

That is not to say that being a "Special Needs Mom" is any more important than any other type of Mom, because it isn't.  That is one of the pitfalls of this job, to think that this particular journey is any more important or difficult than any other.  I have no idea what it is like to be a "Single Mom" or a "Same Sex Mom", a "Step-Mom", an "Adoptive Mom" or any other title that we can apply to this job.  Despite the content of this blog, it's not my "Special Needs Mom"-ness that defines me any more than my "Twin Mom"-ness or my plain ol' "Mom"-ness.  I'm a Mother, just like the other millions out there.  We all bring our uniqueness to this title, but in the end, we are all the same deep down.  We want what is best for our children. We want a roof over their heads and food in their bellies.  We want them to grow up to be happy, productive adults.

This Sunday we will enjoy the many flavours of Motherhood.  Whether we biologically or adoptively assumed this role, we all have lots in common.  We forget that sometimes.  We all have our quirks, or specialties and even our weaknesses. We all have discovered strengths that we never thought possible.  "Mother" is the most demanding and most rewarding job I know.  It doesn't matter what prefix you put in front of it.

“Why do people say 'grow some balls'? Balls are weak and sensitive. If you wanna be tough, grow a vagina. Those things can take a pounding.” - Betty White

There's That Word Again...

Today marks a special day of sorts.  It is not a birthday or an anniversary.  It is not a reason to break out the best glasses and pour the bubbly.  It is not the type of day where everything just seems brighter.

In a way, today is a day that I wish did not have to exist.

Today is a day of action and of awareness.  Today is 3-7-12, the day chosen to "Spread the Word to End the Word".

The word in question here, is "The R Word" or "retarded".  It is a word that means many things to so many people.  To people like my son Wyatt who have learning disabilities, it has a whole other set of meanings that you may not be aware of.

It is a word that, not surprisingly, disappeared from my vocabulary when we learned of the high probability that my unborn son had a chromosomal disorder.  It is a word that I had used, many times in my life to mean many different things, stemming all the way back to childhood.  I saw this word like any other word, in the sense that it is the individual that gave it power.  Although I had never used this word to harm one who was "less fortunate" than myself, I felt myself entitled to sling it from the hip like any other.  I used it freely, much like the cuss words that I regularly weave together for the amusement of my friends and family. 

I stopped using this word.  I stopped using this word initially out of respect for my son.  As our lives have progressed, I have realized that I stopped using it out of respect for others, for those that have gone before... and also out of respect for myself as a mother and a human being.  I have realized its true face and it is a monster.

The main issue is the continued casual use of "retarded". I understand that it may be difficult to connect the dots between bullying a "retarded kid", to calling yourself the same thing when you lose your car keys.  Or describing your dog's behaviour when he is chasing his tail.  Or any number of silly little things that may happen to you in the course of the day.  It's this use of the word "retarded" that I wish to address.

The word "retarded" did, yes, originally come from a medical context.  It is still used in places like mental health, not to describe those with a learning disability, but rather to describe a "slowing", as in the phrase "psychomotor retardation" (an acute mental health symptom to describe halting or sluggish functioning).  It was originally used as a blanket description for those with an "intellectual impairment", a permanent condition.  Wyatt, if born 20 years ago, would have been referred to by this term by his physician. If born in Europe less than 80 years ago, he would have been killed at birth, forcibly sterilized or been starved or gassed to death as "unfit" for life because of this term.

Like many other words in the English language (that shall remain nameless), that word was changed and became to mean many more things.  It became interchangeable for "stupid" and "silly" and "defective" and "ill conceived" and "not thought out" and a plethora of other definitions.  It also became a symbol of hatred, of mockery and of shame.  Shameful for parents who had borne such a child.  Hatred for abusers and mockery for those that bore the brunt of the abuse, many of whom could not defend themselves or possibly comprehend what was happening to them (which made them even more accessible as targets).  Understand too, that these are the times when people with learning disabilities were locked away and forgotten, allowed to rot in institutions without stimulation and without encouragement.  There was no in-home OT, there was no nourishing of the mind or spirit.  They were not allowed to develop, they were not allowed to achieve their potential.  They were discarded.  Like human garbage.

Times have changed, yes.  Luckily we have evolved and educated ourselves to not pick on those who are differently-abled.  At least in polite company, we do not use this term any more.

However, human nature being what it is, we don't like being told what to do.  Most people have no context; they don't know anyone with a learning disability.  Many people see this as "one more word that I cannot use" at the very least and "censorship" at most.  This fosters resentment.  I dig that.  I understand that because, once again, I am new at this special needs parent thing.  I understand as I used that word to mean many of those things up until about a year and a half ago. 

Spread the Word to End the Word and the day to day efforts of so many is not the embodiment of a group of parents (or the government, or whomever you picture) wagging their fingers at you telling you that you cannot do something.   It's not that paternalistic.

It's about people like Wyatt.

Whether you wish to admit it or not, it is about Wyatt and people like him.  Yes, you are not directly pointing at and making fun of a child with learning disabilities.  You are not throwing my son to the ground.  You are not torturing or starving him to death.

What you are doing is using the language of those who would (or have in the past).

When you use the word "retarded", you are using an antiquated word that, unfortunately has come to symbolize the struggle of people with learning disabilities.  You are using the language of the bully, you are using the language of the abuser.  You are using the language of those who hurt... and you are using it to describe your new bank fees.  When you do this, you are not only being offensive in the most literal definition, you are also being demeaning in the most literal sense of that word.  You are attributing (for example) my son's daily struggle to learn to eat, to learn to sit, to learn to read, to learn to speak, to your own inability to grasp your company's new vacation policy or what you think of some new rule in your kid's soccer league.

More often than not, it seems that people use this word to describe things that they themselves don't understand or find too complicated. There is irony here.

I have been told that I am "out of line" for asking people to not use the R-Word.  I have been called selfish, blind, misguided, oversensitive and foolish.  Oh yes, and the R-word itself, again just for irony's sake.  I have been told "it's just a joke" and I have been called a "fascist". (Once again, this is what fascists do to people with disabilities.) People "don't mean it that way" and when they use the word, somehow it is supposed to be transformed into something different.  Like making candy floss or sawing a lady in half.  Unfortunately, in reality, it's still just smoke and mirrors. All you've managed to do is show me how you can Bedazzle a turd.

It's not cool when those around me do it.  It's not cool when Hollywood does it.  I'm now going to do something that I rarely do:  eat my words.  Once upon a time, when this was all fresh and new and I was determined to be the "cool" parent of a kid with Down Syndrome and not be the word police, I said something that I now wish I hadn't.  I said that I did not believe that using this word in familial company or in an agreed safe place (such as among friends) was wrong.  I even joked that we were reclaiming this word.  We were going to take it back. 

I was wrong.  It is never okay.  (Chomp, chomp...)

When I have the rare moment to actually sit down to a movie or a TV show, I , like everyone else, want to be entertained.  For a block of time, I want to escape my reality.  I want to suspend my disbelief.  What I don't want, is to be dragged back into a reality where people "have fun" at the expense of others, just to get a cheap laugh.  Learning disabilities are not a punchline.

Maybe you think this is my problem or I am being "too sensitive", let me ask you this:  what if we change that word to "gay".  Or the N-word. Pick your slur, one that is used to degrade and demean a group of people. Not only is it not funny anymore, but I'm betting that there is a group of people out there, like a GLAAD or an NAACP who will tell you exactly how unfunny it really is.

Unfortunately, Wyatt doesn't have a group like that.  People with learning disabilities don't really have a watchdog champion. Those with Down Syndrome especially, being such a physically visible group, are considered, by some, "safe" for ridicule. Check YouTube, if you don't believe me.  After all, a guy with Down Syndrome isn't going to really ever be a police officer, right?  A person with Down Syndrome is probably never going to run a multi-billion dollar corporation or make sure you get your government assistance.  People with Down Syndrome probably won't be in charge of hiring or firing you in the near future.  There are less and less people born with DS these days too.  So, what's to lose?

I understand this is an argument that I am never going to win.  I understand there will always be bigotry and always be ignorance.  I understand, some can't grasp this concept and will blithely continue on.  You understand I will call you on your use of this word. You understand it's not okay and I consider you intelligent enough to know better.  You understand, you and your ilk will have no place in my life.

Bigotry, in any form, has no place in my world.  "Everyone does it", "it's just a word", "I don't mean it that way" are simply not acceptable.  Not any more.

There will be those that disagree, there will be those that get mad.  Feel free to un-friend, stop reading, whatever it is you do.  Before you go, stop for a second and ask yourself why you are feeling this way.  Honestly.  If you look deep enough you may find an answer that surprises you.  You may find a little guilt.  You may find that you know you are doing something wrong;  You may find that you are actually mad at yourself.

There's a couple other R words that I would rather see used:  Responsibility and Respect.  Responsibility for one's own words and actions... Respect for all.

"Retarded" is a constant reminder of struggle that thousands of families, including my own face on a daily basis.  It is a constant reminder that there are some very cruel people in this world.  One day I will have to explain to Wyatt's twin and older brother why it is that some ignorant kid (with even more ignorant parents) called their brother a horrible name or started a fight over Wyatt. I will one day, have to explain to Wyatt what cruelty is. What makes people do hateful things, why they must make others feel horrible so that they can feel better about themselves. Why they teach their children that such behaviour is okay.

But not today.  Not in the immediate future.  I have children to raise as happy, healthy, productive and caring members of society.  For now, that ugliness will be locked firmly outside.  Outside Team Logan.  Outside our vocabulary.  I don't care how many groups I have to leave or TVs I have to turn off or products I will stop using.  It will be outside, in the cold and the dark and be forgotten.

Where it belongs.

Make today the first day.  Take the pledge.  Make the conscious decision to stop using a word (and it's many permutations) that hurts those that certainly do not deserve it.  Do it for Wyatt, do it for yourself.

End the Word.

--------------------------------
Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.

If you wish to say something about this blog, you can do so HERE.

Happy Birthday, Babies!

A whole year has gone by. 

I'm still in shock at this realization.

One year ago today saw the beginning and the end of a lot of things.  One year ago brought us some harsh realities, packaged up into two bundles of joy.

Last year, my twins were born six weeks early.  Wyatt first, then his sister Zoe a few minutes later.  Wyatt weighed in at 4 lbs, 13oz, while Zoe was much smaller at 4lbs, 1oz.  Both had oodles of dark hair and the gossamer skin of prematurity.  Both had bright blue eyes.  You could tell right away that Zoe was going to be the spitting image of me.  To the medical staff at least, you could tell right away that Wyatt had Trisomy 21 or Down Syndrome. 

I was certain of his diagnosis as I looked over at his warmer a few moments after he was born.  Each baby had a team at his or her bedside, including a physician and several nurses.  Zoe's team was joyful;  there were jokes and occasional pauses in their work as they reflected on some nuance of my beautiful, yet feisty daughter.  Wyatt's team were a stark contrast.  They spoke in hushed, respectful tones as they worked on my son with efficient, businesslike hands. My husband jokes that my writing is often a string of homilies.  He's right.  This is the moment that began as I looked back and forth across the surgical suite, comparing and contrasting Team A and Team B as they saw to the needs of my newborn children.

Wyatt's cry at birth was different than Zoe's.  When he let forth the first breath of air that he had sucked into his tiny lungs, he sounded all the world like the newborns you hear on TV... only in short bursts. Zoe's pitiful wail would change shortly to the commanding screech she has now, but I did not hear her until after she had been totally suctioned out.  "She is the one that sounds abnormal", I remember thinking to myself.  "He sounds just fine to me."  I would later understand that she sounded like any other premature baby, but at the time, it gave me something to rationalize.  After the Neonatologist gave his awkward pronouncement,  they eventually brought Wyatt over, sleepily bundled up for me to see.  I gave him a quick peck before he was taken away by his procession of gowned attendants to the NICU.  "He doesn't look like he has it..."

Zoe was brought to me, mummified and scowling.  She was so tiny... so much smaller than her twin.  Even bundled up, she was still smaller than a football.  Zoe was too far away for me to kiss and I was about to ask for her to be brought closer when she was handed off to my husband and they too were whisked off to parts unknown.

"So small... So small.  Please be okay...  Please..."

I did not get to hold my children until the next day when I dragged myself and my IV pole almost the length of the hospital to the NICU.  After a night of lying half awake and in constant pain, I needed them and they needed me. Anyone that ever refers to a Caesarian section as "the easy way out" need only talk to me and hear the particulars about that walk.  My nurse was very concerned as I forced myself along... after all, we were supposed to be just dangling my legs over the end of the bed and here I was, on a mission, with my ass hanging out of a johnny gown.  She knew better than to stop me however, for at that moment, I would have crawled there over her broken body if that is what it took.

The babies were in separate isolettes and I visited each one in turn.  I was there for over three hours as my nurse came and went with a wheelchair, hoping to coax me back to my bed where I needed to rest.  The sad part was that I was resting;  the NICU, despite housing very sick babies, is the quietest place in the hospital.  The frequent spine-jarring announcements are hushed, the lights are muted and everyone talks in dulcet tones.  I spent a good while with each of them and examined Wyatt myself.  His ears were smaller and lower on his head and had a telltale fold.  His eyes were almond shaped with epicanthal folds.  His nose had barely a bridge and his face was flatter than hers.  His skull was shaped differently, being wider at the back and smaller at the front, giving the appearance of "points" on either side.  The back of his head was flattened and you could feel that his soft spot was open in a V to his eyebrows.  His hands, much to my delight, did not have a singer palmar crease and his toes did not appear to be parted with a sandal gap. Other than his heart, no other "abnormalities" were discussed.  "Maybe he's Mosaic... "  My husband came and finally convinced me to return and if not rest, eat.  Which I did, ravenously.

Flash forward a year and here we are.  My husband is in the kitchen putting stew in the crock pot and the kids are having great time playing together on the floor behind me.  Those fragile little humans are now thriving babies, who astound and delight us daily.  The only thing that has developed more in the last year is us.  Our thinking, our way of doing things.  There was a time where Wyatt's diagnosis would have meant something terrible.  (It isn't.)  There was a time where I would not have thought that I would have so much interest in genetic disorders and have time to make a difference.  (I do).  There was a time where it seemed that nothing was going to be right again.  (It didn't turn out like that at all).  There was a lot more born a year ago on this day than just these two babies:  Team Logan,  our network and support systems, our awareness, our desire to educate and advocate.  Two parents of a special needs child came into existence too.  We have all come so far.  It has been very difficult at times, of that I will not lie.  We've made therapy a casual everyday thing, something we can do while we play.  We make mealtimes fun.  We explore our world through the kids eyes, whether they be blue, brown or have Brushfield spots.  We love our son and embrace his differences just as much as we do his "sameness".

Today we celebrate many things along with the birth of our children.  Today will celebrate life and love.  We celebrate inclusion, we celebrate acceptance.  We celebrate strength and endurance.  Knowledge, education, awareness, advocacy... the list goes on and on. 

We celebrate new beginnings today. 

Happy Birthday, Wyatt and Zoe.  You are both perfect in every way.

You guys ROCK!

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 gypsy 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 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 clumsier 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 is 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 an inspirational 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 crazy days, people need 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.  I can.  I have.  I will. 

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 Inspire 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 inspiration, may it bring you joy.  May you too find your ember and may it warm your soul.

Milestones

Another week, another round of appointments.  I don't know if these appointments are getting easier or if I've just completely accepted that I will be doing a lot of this for the rest of my days.  Yes, getting to and from can sometimes [most of the time] be problematic with silly scenarios that I [have a knack for] seem to get into.  Lately I've been letting it all roll off me, which is made a lot easier as the news in these appointments has continued to be very encouraging. 

Monday morning was our follow up with the Neonatal clinic at the hospital.  Premature and underweight babies are at high risk for developmental delay so naturally Zoe was referred.  I initially thought the appointment was for both of them, but after an awkward few minutes at the desk I was informed that they don't follow Down Syndrome babies (they leave that up to Infant and Child Development).  Zoe had an appointment to herself for the first time since her surgery.  This was her official 4 month (corrected) visit.

The first little bit was typical:  weigh her in, measure and report.  According to the scale there, she weighed 13 lbs, 4 oz which I think is a bit more than she actually does (they left her dress on, so that could have added a few ounces).  Then it was meeting with the OT (Occupational Therapist) who laid her on the floor and checked out her development.

According to the Nippissing District Developmental Screening Tool, at four months of age a child should be able to do the following:

• Turn their head from side to side to follow a toy
• Glance from one object to another
• Turn [their] head towards a source of sound
• Make some sounds when looking at toys or people
• Brighten to sound, especially to people's voices
• Respond to you by making sounds and moving arms and legs
• Laugh and smile
• Finish each feeding within 45 minutes
• Lift [their] head and support self on forearms
• Bring both hands to chest and keep head in mid-line while lying on back
• Hold head steady when supported in a sitting position (ie:  in an infant chair or on your lap)
• Hold an object briefly when placed in their hand.

(© NDDS Intellectual Property Association, all rights reserved). 

Now, according to the OT, Zoe is scoring in the 50th percentile for her real age, not her corrected one; she can do this list and so much more (roll to her stomach, roll back to her back, hold objects in both hands, etc).  This is fabulous news... albeit not terribly surprising, given "The Princess" (as dubbed by the NICU nurses) has always been a superstar.

Yes, I can multitask.  I learned it from my Mommy...

The Neonatologist was simply enamored with her which also isn't too surprising as she is a real flirt when she is not screaming.  After a few physical checks (heart, lungs, eyes, ears, fontanel), he was done and so were we and we received our next appointment for late November.  We spent the rest of our time at the hospital visiting with Mommy's colleagues where both babies were held and snuggled by all.  Quinn didn't do too badly as well... he scored some Timbits and covered the office in original artwork.

...And on the way home I stopped traffic.  Yes, you read that right. What would a "doctor adventure" be without the "adventure" part?

When we had left in the morning it had just stopped raining;  it was quite possibly the first rain we'd had in a month.  The stroller was packed with rain gear: stroller cover, giant umbrella, a rain coat for Quinn.  At some point while we were inside the skies had cleared and the sun had decided to beat down once again.  I cursed myself for leaving my sunglasses at home and forayed out into the blinding light.  We were almost panting by the time we reached the bus stop and there was no shade to be found as the sun was almost directly overhead.  By the time the bus came we were already very hot and in need of something cold to drink.  I told myself that when we reached our connection if there was a wait we would go into a nearby store and get a drink, which we did, to cool off and kill a little time.  Once we left the store I started cursing as I realized that the curbs and sidewalks on all four corners of the street were torn up.  Our bus stop was missing in fact.  Damn and blast!  How were we supposed to get home?

I ignored the "use other sidewalk" signs as the bus I needed drove on this side of the street.  I deked up into a handy driveway to hopefully cut through... and found fences everywhere.  We were trapped.  I had two choices:  1) walk back to the "corner", cross the street, walk two blocks down the street, cross and walk back up to the nearest stop or 2) improvise.  I was also wearing strappy slip on sandals with a two inch heel that sounded like a good idea in the morning, but now were rubbing the skin off my feet as they swelled in the heat.  Vanity, thy name is pedicure.

We chose option #2.  Traffic had been reduced to one lane as there was an enormous digger currently gouging out the existing sidewalk and dumping the refuse into an equally enormous dump truck.  At a safe distance from these behemoths was a middle aged [read:  older than me] woman holding a slow/stop sign.  I chose to walk right up to her through a cordoned off area and ask her where the bus stop on this side of the street had gone (it was missing too).  She motioned and yelled something about a block ahead of where we were standing. I could barely hear her over the machines but eventually I made out that she was asking how old the twins were.  I let her know, she looked at each of them lovingly while Quinn stood, mouth agape watching the metal dinosaurs claw at the earth.  I had to interrupt her momentarily to ask her how I was going to get there and she smiled and answered "Well, I'm going to stop traffic for you".

So she did.  She stepped forward, expertly held out her hand and swung that sign around to "STOP" so that I could push the stroller (and Quinn) to the nearest bit of unmolested sidewalk.  On Main Street. In the middle of the afternoon.  It was crazy!  I sauntered down the middle of the road, the divider a foot or two to my left, past the giant machines (I have to admit I was a little spooked) and safely onto the sidewalk... a trip that had to take at least a full minute.  I could feel the traffic building up behind me and knew it had to be solid cars halfway to Orangeville.  I got to the sidewalk, flashed her a thumbs up and traffic started again.  I wasn't paying attention but I am sure I got more than one dirty look.  We opted to walk home from there;  it was a hot one broken only by a few shady spots which we took advantage of.  When Sean came home I regaled him with this story only to have him say "It's a good thing you had that giant umbrella with you for shade!"  Yeah.  Good thing.  (Dammit!)

Wednesday was a big day for both babies as we followed up with the pediatrician. Zoe weighed in (naked this time) at 12 lbs 14 oz and Wyatt a cool 12 lbs 9 oz.  Our mighty Micro-me has finally surpassed her moose of a brother (which is not surprising due to his hypotonia). They are exactly the same length,  58 cm (or almost 23') which is two centimeters more than Quinn was at birth.  (No wonder I needed that section!) According to the charts, Zoe started her life in the 5th percentile and has now moved up to the 25th. Wyatt remains in the 5th percentile.  At our last visit I asked how Wyatt was doing on the DS growth charts and was answered with "I wasn't aware there were such charts".  You'll permit me the mental high-five I gave myself when she added "...but he is at the 25th percentile on the Down Syndrome Chart" this time.  Score one for Advocate Mommy!

She was quite pleased at their progress over all.  Zoe was in a bit of a playful mood and when she tired of rolling to her side and scrabbling to get the box of wipes, she started going after the paper on the table.  Even as I was pulling her away she continued to frantically grab at it with both her chubby mitts and try to eat it.  It was hysterical.  I had to hold her for the rest of the appointment (which was fine as she is content looking around).  When I put her down to change her she rolled over and tried to crawl to the paper mess again.  Our pediatrician was amazed and remarked that it was very unusual in a preemie that age to be so mobile and it was a testimony to the amount of floor time and the kind of stimulation they got.  (Mental high-five number two!  Yay!) 

"Globally delayed"?  I didn't get THAT memo...

We also got the official go-ahead to stop the formula top-up (oh thank you!).  It isn't as easy as just cutting it out at this stage however;  I have to taper everything.  First will be a week of top up with formula in every other bottle, then a period of every other feed having EBM only top up and then taking it from there.  I'm still going to have to pump to make sure that the supply isn't impacted either.  I may never be able to stop pumping after a feed, but time will tell.

That particular trip home was easy as Sean picked us all up.  I got to tell him how awesome all the kids were, including Quinn who patiently sat through yet another appointment and carefully wrote down everyone's weight and measurements.  It was a stark contrast to the outburst he had before the appointment (where he threw a fit and refused to go).  He's growing up too...

I know not all of our appointments are going to end so well.  There will be a point in the future where Wyatt will have his AVSD operated on.  However, I hope that we will continue to have good news and be validated by their development and good health.  I am aware that we may be "honeymooning" with the twins right now and that is okay.  With my return to work date coming fast I feel that we deserve this time together.  That is okay too.  We are moving forward, all of us as a family and meeting our own various milestones.  Right now everything, dare I say it, seems to be all right. Wyatt is just Wyatt and his DS is just something he has, like his blue eyes.  It doesn't define him, or his sister.  Or us either.  It simply is.

That, ladies and gentleman, is a milestone unto itself.  At least for me.