Monday, May 27, 2013

Normal

It's been well over a month since Wyatt's surgery.  I am starting to feel like my self again only now, after two sun-filled weekends at home.  According to the experts, this is a 'normal' reaction after an extended period of stress, after a perceived threat (in this case, to a loved one).  Despite my profession, I have to keep reminding myself that a low period after a time of intense stress is to be expected.   It's a natural reaction, especially when you consider that my [often precarious] work-life balance was tipped dramatically in one direction then quickly pushed back again. After the surgery, I was going along at a pretty good pace too, or so I thought... until I found myself in an empty room, unsure what to do, straining to hear anything over the silence and my own breathing.  The sudden absence of a presence, one that had haunted us for over two years, left a void that I had to fill.  Over time I did that.  I've made it my own.  After spending time with my family, after spending time in the garden, I feel better.  I feel more like myself; our family life has cautiously settled back into its own rhythm.  Wyatt's progress has been a big part of that:  his rapid healing, his adaptation, his overcoming of things like sore muscles and wired ribs that feel weird has helped us all maintain some clarity as we assume our 'new normal'.  Our post surgical normal.  Our brave new world.

The idea of "normal" seems to have became a theme in the time since my last post.  I swear, I'm running across examples and discussions about this all over the place.  This concept of normal vs broken seems to be a real thing in the DS community (if you can even call it a community any more).  When you think about it, it's no wonder really; after thousands of years of looking at those with Down syndrome and those with intellectual disabilities as "less than" or "broken", modern society is struggling to give these ideas up.  These concepts are familiar and comforting, like an old blanket.  However, it is time to evolve and "put away childish things", as it were.  People with intellectual disabilities are here, have value and worth.  Different.  Equal.  Not separate.

I will agree that the extra chromosome gives a lot of unknowns, a lot of variables.  My first, "typical" child was a "What to Expect..." baby.  Every month there would be a new list of goals, of things he "should be" doing, things he "might be" doing and things that would be coming up soon. Spoiler:  he didn't follow the lists.  Quinn was barely starting to walk at 18 months, but had the vocabulary of a child much older.  He didn't play with toys conventionally either, preferring to figure out how they worked and then make some kind of art statement out of them.  

What we've realized with Wyatt is that development is non-linear.  It is fluid.  He does not progress along a predictable path towards a readily recognizable outcome.  It may take him months to finally realize that tapping his spread palm to his chin means "mother", but in a short period of time can polish off a few skills that took his typical siblings months to reconcile. Instead of sitting still while he recovered from open heart surgery as he could no longer crawl, he instead adapted and learned to "scoot'.  Holy cow is that kid fast.

Even amongst children with DS, there are no set rules.  Not so long ago, pediatricians everywhere adopted a series of Down syndrome growth charts, which for chart/graph minded people like pediatricians, seemed to be a good thing.  It helped everyone to get over the idea that kids with DS were "poorly" due to their (generally) smaller stature when compared to their more typical peers.  These charts are now falling by the way side as not every kid, especially the ones with DS, adheres to a regular growth pattern.  None of my kids have, that's for sure.  Growth charts are a touchy subject with me anyway as I am the Mom of two preemies.  I've found myself shifting from foot to foot with irritation at a number of appointments, as I watch my two obviously thriving children not "measuring up" to what some chart has to say about "healthy growth".

Wyatt, even with his (previously) busted heart, is not broken or deficient.  He does look slightly different than other children I guess.  Most people that see him or his pictures want to nibble him, so I can only assume that he's a pretty good looking kid (which, as his mother I suspected all along).  None of my three look exactly the same...  Quinn is currently in a bag-of-antlers stage, with stunning blue eyes that make you want to fall in and drown. He's also in that stage where some of his teeth are loose, some are sticking out at odd angles and the new ones look like they belong to a horse.  Zoe has my olive complexion.  She has straight hair--which is a sharp contrast to both her brothers and their blonde curls--and soft brown eyes that can go from molten chocolate to granite in seconds. She can also do bridged lateral push ups between the couch and the coffee table.  Genetics are a wonderful thing.  However, due to some physiological differences, Wyatt is considered to have a "visual disability".  It is "visual", as you can see it and therefore--if you talk to a large (ignorant) percentage of the population--get to pass judgement instantly on his abilities by just looking at him.  A casual glance at his twin would not reveal that she has a lisp or delays in her speech or hand tremors that often occur with prematurity.  However, Wyatt, due to the shape of his eyes and his button nose, perhaps the way he holds his mouth or curls his toes, is immediately "recognizable".

There are no delusions about the future.  Wyatt may develop some behavioral problems, that is true.  Having been in Mental Health for years, the place where people with "outbursts" of all shapes and sizes end up, I've had my fair share of experience in this area.  I also know how many of these come about and how easily many instances can be both exacerbated or prevented.  He may not face this, either.  He may speak 'clearly' by conventional standards, or not.  Perhaps he will not speak at all.  Regardless, he will be able to communicate his wants, needs and desires quite well.  You will need to possess the willingness to listen.  It doesn't take much really, other than an attention span and patience that lasts more than a beat or two.  I also won't know until they are grown up whether any of them will have schizophrenia (as I have two cousins with this), will suffer from depression, have diabetes or cancer.  There are variables with all my kids, just like your genetic code will dictate whether your kids will develop the issues that occur in your family. 

I guess, in my mind, that's what really set the "This is Down syndrome" list of illnesses and disorders away for good.  Yes, my kid does go to a lot of doctors.  So do I, when you think about it... and I consider myself to be a reasonably healthy person.  To put it another way, here is a list of things that can "go wrong" if you happen to have Trisomy 21.  Here's a list of things that can "go wrong" if you are human:


It's a big list...


Homo sapiens are a diverse bunch, full of colours, shapes, sizes and bodies that ultimately break down, no matter how much we exercise or how organic our produce is.  Or how many chromosomes we may or may not have.  We are all broken, if that is the criteria you use to determine worth.

I think the sooner that we as a species, realize that all of us have equal value, the sooner we will stop hearing stories like this one, where a hotel in Spain refused to allow children with Down syndrome as they would be "disruptive".  We'll stop perpetuating myths that our kids with intellectual disabilities have an unholy attraction to water or wandering;  kids without DS can drown and bolt without warning just as easily.  I know this, I was that kid.  I would routinely wander off, especially in public.  My mother can tell you many stories about how I would hide in clothing racks or just get lost, period.  My mini-me daughter is shaping up to be the same too, which is going to mean a lot more grey hair in the future (assuming it doesn't just give up and fall out).  Everybody wanders and gets confused by their surroundings from time to time.  If you don't believe me, watch a security camera in a hospital for a length of time.  Trust me, I've seen some things...

Normal, as they say, is simply a setting on the washing machine.  When it comes to people, there really is no such thing.  We're all bags of quirks and "illness" and here for a very limited time.  That includes our members with developmental delays and intellectual disabilities.  There is no "less than".  There is no broken.

There is life:  messy, glorious and mostly mercurial.

Sunday, May 26, 2013

Silent Sunday: Spring Sunshine

Ooo? Quinn and Zoe Zoe Quinn Giggles Zoe in the Sunshine In the jungle Quinn and Zoe and a Truck Zoe and Wyatt

Friday, May 10, 2013

Motherhood: Now and Zen

Sunday is Mother's Day.  I really wanted to write a funny post for a change...  one that was full of the madcap antics of my household.  Possibly even some highfalutin' adventure.  Hey, it could happen.  However, most of what happens in my house lately has fallen into the "you hadda be here" or "TMI" categories.  You don't need to know the intricate details of how I can't use the washroom or have a bath or shower in peace, between the hours of 8am and 10pm (give or take an hour on either side).  You don't need to know what happens when a toddler on Lasix, a full cup of juice, two oatmeal cookies and an undersize diaper collide.

You don't.
You're welcome.

The reality is, I'm really not feeling very funny these days.  Oh sure, we're still laughing, we don't live in a tomb for heaven's sake.  However, I'm not feeling uber witty, all light and bouncy and full of one liners.  That probably has a lot to do with Wyatt's recent open heart surgery.  He's fine, great even.  He's done remarkably well and will be the subject of many an update.  However, I have to recognize that as a Mother, seeing your child go through that is stressful.  So stressful I think, that I can honestly say that Wyatt's surgery date was probably the worst day of my life.  I often describe my kids to my childless friends as the walking manifestations of my own heart.  That they are too, no matter how mad I get at them for breaking my stuff.  To then hand over one of them, to have his own heart cut open and fixed, sewn back up and then handed back... it's the kind of stuff that affects one deeply, totally because of my Momness.  My nurseness is all "keep the incision clean and monitor for CHF", but my Mommyness... she's having a bit of a hard go.  Despite what I think, despite what my hardass side thinks, it's going to take a while to get over that.

What I am doing between random bouts of productivity is a lot of reflection.  My story, as a mother, is just one amongst a billion.  I've thought about that.  I've thought about a lot of other mothers lately that have also touched my life.  My own, obviously, whom I won't talk about as she is now reading this (Hi Mom!) and many, many others that I have met along the way that have gently shaped my reality.

In my early days of nurse-ness, in my first psych job in fact, I met a mother who will stay with me always.  I was so new in fact, that I was in the (now enviable) position of being too inexperienced to completely comprehend the potential dangers of my job (yet still managing to scrape by somehow).  Later on I would live in fear for a while, as the knowledge of what could happen became very real.  As time went on, as experienced has been gained, I am no longer in fear.  However, this lady was pretty much one of my first "first break" parents to have a Health Teaching conversation with.  I've had that conversation seventy bazillion times since then, with varying results and varying levels of comprehension and acceptance.  This evening however, she was listening to every word that I spoke to her, yet still possessing a gaze that was miles away.

It was Sunday evening and we stood at the front desk. She had brought her son back after a weekend pass at their island cottage "where it was safe and he could just run around and scream at trees, y'know?".  He was resistive to medication, had refused to take anything other than his sleeping pills all weekend and was so paranoid and delusional that we had become part of the scenario he had built in his head.  This son had gone from being a kid with okay grades, played sports and had a pretty little girlfriend who adored him.  Now he was demanding that we take the microchips out of his head, that we were the FBI, the gestapo.  His parents had hoped that a weekend in a more familiar setting would help "settle him down". She was pretty put together, this Mom.  Edgy haircut, smart looking glasses, expensive clothes.  She was an educated, successful woman who joked occasionally as she spoke. She was accepting of his illness, yet her eyes spoke of her sadness that this new development had brought on.

A terrified howl and the sound of furniture going over got my feet moving and I ran down the hall, my Doc Martens digging into the carpet. I unconsciously checked for the restraint keys in my lab coat pocket before stepping forward through the crowd of white coats around his bed.  I talked him out of his corner, encouraged him to take some medication and stayed with him alone until he had calmed down a bit and promised me that he would try and go to sleep.  I caught sight of his mom in the hall as I was picking up the pieces of a broken overbed table.  She was out in the hall, half pacing, half lingering to talk to me.  Dragging the table with me, she told me of her son, the one she knew, not the sick version that was currently mumbling to himself as the medications started to work.  She felt robbed, she said, that this illness had seeped in little by little, hardly noticed until it was raging in front of her.  She despaired that her son would never come back to her.  I comforted her as much as I could, gave her as much information as I could, but it was obviously not enough.  As we parted company that night and I dragged the broken table to the back hallway I knew then that schizophrenia was, as a parent, one of the hardest things to see happen to your child. At the time I was separated from my husband and convinced that children were not for me.  I remember thinking that this experience only strengthened my resolve.  This would be too much to bear.  I ran my french manicured nails through my blonde-on-blonde locks and contemplated the lack of guarantees in life as I sat down to chart.

Since that time, her face, her words come to mind as I talk to parents.  I often wonder what happened to that young man and his family.  I saw him through the crisis, helped the family as much as I could until he was discharged home.  So much has changed since that time however; even the person I was then no longer exists.  That much younger person was all about having a good time and going to the gym and spending an hour a day on her hair.  Now I'm lucky if I get to run a towel through it before grabbing a scrunchie and makeup is only attempted if time, circumstances and weather permit.  Many years later I wish I could reach back through time and speak to this Mom again and talk to her, mother to mother.  I would not be able to take her pain away, but I would know how to ease it sooner.

I saw that mother again the other day.  Not really, but as I was absentmindedly poking at the monster zit erupting on my chin I caught a glimpse of her in the mirror.  Something around the eyes, the way my mouth was set.  A weariness.  The look of a mother whose resolve has been tested, whose child's life has been endangered, even if only in her mind.  She has been through an ordeal, this mother.  Unlike those years ago, I know what to say to this woman.  I know to show her the future, to look beyond her body's natural reaction to rest, to regroup, to minimize.  To be kind to herself and not take too much on.  I know what to say now.  My only hope is that I listen.

Instead of spending Mother's Day in bed, being surrounded by my family and having breakfast made for me, I will spend it with a group of other mothers.  There will be no brunch, flowers or handmade cards.  There will be more terrified young men however, along with very sad mothers (and fathers). I will be working this Mother's Day, as many of us Nurses do.  If we decide to do a pot luck (or order in as we tend to do on special days), we will combat the sadness by making a sheet a table cloth and eating our delicacies in shifts.  It always amazes me, how we create civility out of sterility and chaos.  But we do.  We will talk about our families and share war stories about other families, other mothers.  In this surreal universe that is my life, this makes total sense to me, to explore the facets of "Mother" on Mother's Day, surrounded by mothers, in a break room located in the heart of psychiatry of a large regional hospital. 

Mother.  We all came into this job woefully unprepared and all of us face the unknown with our children.  It is a job that is completely thankless at times.  It is a job that comes with infinite happiness.  It is a job that can vacillate between the two, mid-sentence.  Special needs or not, this job is hard, the hardest thing I have ever done.  We wake every morning with a list formulating in our head and retire at night wishing we had gotten more done.  It's never as we imagined it.  As my daughter walks over with a huge grin, sneezes in my coffee and tries to feed me the plastic container of a Kinder Egg out of a toy basket, I reflect on that:  it's never as we imagined it.  Thank goodness too, as I never would have imagined how hearing Wyatt laugh without running out of breath would sound, how my chest contracts and my own heart hurts when I see it happening.  How an hour long lecture on long division and the digestive system would be music to my ears as I prop my head up and poke absentmindedly at my dinner after a long day at the office.  How real and surreal and magical and factual and sad and joyful it can all be.  There are still no guarantees, my then-me still got that right.  My now-me knows that Motherhood is a journey, one that mainly resides in the intangible.

Happy Mother's Day to all mothers everywhere.  May your day be reasonably restful and stain-resistant. 

Wednesday, May 1, 2013

In the News - April 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and awareness. April was a busy month, including the ongoing efforts of the Down syndrome community to demand justice for Robert Ethan Saylor and to illuminate an ongoing bias towards those with Trisomy 21. 


Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

BLOG
The weirdness of being told that the death alternative is the one I should consider.

Read more here: http://www.islandpacket.com/2012/12/01/2295922/beaufort-teen-with-down-syndrome.html#storylink=cpy
BLOG
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Attitudes about Disability Prove Almost Lethal
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
Support flows for woman with Down syndrome mocked by radio DJ - See more at: http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf
BLOG
BLOG
VIDEO
BLOG
Cutting Our Teeth on a Paradigm Shift –
BLOG
Antidote
BLOG
Questionable Parenting (this post is funny) –
BLOG
Ask the FBI What is Going on in the Frederick County Sheriff (Day 2 of “8 Days for Ethan”)
BLOG
Public Awareness and a Redress of Grievances (Day 3 of “8 Days for Ethan”)
VIDEO
APPEAL
BLOG
EVENT
Annual Inclusion Awards


BLOG
BLOG
Let’s get some National Advocacy (Day 5 of “8 Days for Ethan”).

BLOG
BLOG
BLOG
Who will speak for Ethan Saylor?
EVENT
LINKS
Sunday Blogaround - 4.7.13
BLOG
LINKS
42 Great Down Syndrome Resources You Should Know About
BLOG
Mom, I Hate Having Down syndrome
BLOG
BLOG
BLOG
BLOG
BLOG



VIDEO
EVENT
BLOG
A Game-Changing Treatment for ADHD
I Married a Pygmy –
A Game-Changing Treatment for ADHD
BLOG
LINKS


BLOG
BLOG


BLOG

BLOG
BLOG
The special education that we really need…
BLOG
LINKS
BLOG
LINKS
DS Research 101: Part 2
BLOG

BLOG
BLOG
VIDEO
VIDEO


BLOG
BLOG
BLOG

APPEAL

EVENT
BLOG

BLOG
BLOG



VIDEO


BLOG

VIDEO

VIDEO
VIDEO

BLOG



This month:






Fairytales, a post from September 2012, tied for a "SWAN" for "Best International Post." 

This month also saw the creation of the Surgical Suite:


...And that's the news.  Keep the stories and information coming! 
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