Showing posts with label Mother's Day. Show all posts
Showing posts with label Mother's Day. Show all posts

Saturday, June 1, 2013

In the News - May 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.  Every day advocacy was a theme this month, as were reflections on motherhood.


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 or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video

EVENT
Down Syndrome Uprising's Advocacy Blog Symposium

Read more here: http://www.islandpacket.com/2012/12/01/2295922/beaufort-teen-with-down-syndrome.html#storylink=cpy

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
Killed by the law, and no one protests
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

Stop mocking Adam Holland
BLOG
In the News - April 2013
BLOG
Getting over your fears

Experts: $240M judgment for disabled men 'stunning'

BLOG
Advocacy: small moments at a time

BLOG
BLOG
BLOG
My brain is busy
BLOG
BLOG

BLOG
BLOG
BLOG

BLOG
World Down Syndrome Awareness Day~ Advocacy in Real Life
APPEAL
BLOG
Being a Down syndrome advocate is a way of life.
BLOG
BLOG
We the Parents –
BLOG
End the Word
BLOG
APPEAL
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
BLOG
A Game-Changing Treatment for ADHD
Motherhood: Now and Zen
A Game-Changing Treatment for ADHD
BLOG
BLOG
BLOG
BLOG
On Motherhood
BLOG
On Mother's Day
BLOG
BLOG
Today I Lived and You Did Too


VIDEO
BLOG

Dad aims to change views of Down syndrome in new book


BLOG
BLOG

BLOG
BLOG

BLOG
VIDEO
BLOG


BLOG
APPEAL
BLOG
BLOG

BLOG

BLOG


VIDEO



BLOG


When the conversation about diversity doesn’t include disabilities
BLOG
BLOG

BLOG


BLOG
BLOG


VIDEO

LINKS
BLOG

STUDY

STUDY

VIDEO
EVENT

This month:

May has been a very busy month!  It saw the creation of our home on Tumblr:

Downwitdat.tumblr.com

The creation of a Facebook Interests List:


The addition of some new friends on our Facebook page, Group and Twitter:

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

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. 

Thursday, May 10, 2012

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

Sunday, May 8, 2011

On Mother's Day

My Mother's Day started like any other day, to the sound of at least one baby crying. Now, as it is the weekend, I've let their schedule slide a little bit which gave me a few extra hours sleep going into Saturday. Last night they decided to take that back; this morning was not greeted as happily as the one before.

Over the course of today, I've received: 1 handmade card (from Quinn), 1 decorated cup full of dirt (that I am assured that a seed lives in), 1 handmade necklace (also from Quinn), and three commercial cards (one from each of the twins and one from Sean). We had to forgo the usual brunch as my husband has been suffering from a migraine all day... which was a bit worrisome as he does not get migraines. The day has progressed like any other day otherwise; dishes, laundry, babies. Meh.

Speaking of babies, both are doing very well after their excellent medical adventures. We were at the pediatrician 2 weeks ago and they had gained a whole pound each. By last week, they had gained another pound, which puts Zoe over 8 lbs and Wyatt close to 9. Wyatt has actually made the growth chart. Hooray!

Last Monday saw us heading to the Family MD after a trip to the polls. All three kids were due for shots. Zoe cried real tears after her needles (one in each thigh) and Wyatt almost turned blue after his... and Mommy was not far behind. Quinn too needed a jab and he took his like a trooper. He had to: Mommy quietly restrained him for the shot. Everybody got Tylenol and a couple of hours later no one was the worse for wear. Including Mommy.

Big Pout
No more ouchies pweeze.

Tuesday was a trip in the rain to Wyatt's cardiologist. They had called us the day before stating that there was an opening and they wanted to sedate him for his test (presumably for a trans-esophogeal). Needless to say, between the 5 year old, the weather and Brampton Transit, we were very late and had to forgo the sedation (not that I minded terribly about that either). Instead, they did a regular echo and were very pleased to note that the ventricular aspect of his Atrioventricular Septal Defect has in fact narrowed significantly. On top of it, there is a significant amount of occlusion, meaning that part of the hole is mainly blocked. He therefore does not have the gross mixing of blood from the left to the right side, which means it is not overloading his lungs and, as we speak, is mainly asymptomatic. He will still need surgery eventually, but I am very happy to report that it can be held off until he is approximately 3 or 4 years of age. That is fantastic news. It allows his heart (and him) to grow and makes the surgery that much easier for everyone. Especially Wyatt.

Another Almost Smile
Yay for me!

As for his Down syndrome... well, to this humble, non-expert, he doesn't look that far behind his sister and most of that (to me) can be chalked up to him being a boy. He does have more variety in his vocalizations, when he uses them. He's more active as well (when he is awake); he can wiggle across the crib to Zoe. I'm pretty sure she can do the same, but she's too busy yelling. I've connected with Infant Development of Peel, so we're now on the waiting list for resources.

Next on our list of specialist appointments for Wyatt will be an ENT (Ear, Nose and Throat) and an opthamologist, all within the next month or so. The appointments have settled down to part-time status, which is a blessing too. Getting these kids out the door is a major manoeuvre; the planning, the anticipating, the preparations, the packing, the equipment... I swear, it would be easier to annex a small country. I had a Region of Peel nurse through here not too long ago and she was amazed at my "organization". I told her it was do or die, and she laughed. She's the mother of twins as well, which left me scratching my head a bit. But, it was nice to know that the cheese hasn't totally slid off my cracker. It's been pretty close some days...

It's the little things that are keeping me sane these days, I think. Well, I'm not totally sure, it could be the chocolate, so that excuse is as good as any. ;) I received a 1 TB (Terrabyte) drive for Christmas and recently I've been archiving all my photography, etc. I've also been archiving my writing, especially since I stopped by my MSN Page on Quinn's birthday and found it deleted. After that little heart attack/discovery, I set up an account with WordPress and have slowly been moving things over. As an interesting footnote here, there were quite a few pieces that I thought lost forever. I took a chance and relit the fuse on an old dispute with Facebook. It only took a few emails, but I got my original profile reinstated. I was delighted (but also a little disturbed) to see most of my stuff still as I had left it, three years prior. It had switched over to the new format but all the rest was the same. I picked off what I could and then reposted them on the WordPress Archives (and then deactivated the account). We shall see... I like the layout and interface there better, however I can (and am) importing posts from my Blogger account. I guess only time will tell. I gave it a facelift as well as it looked a little crappy compared to the WordPress design. I'm also undecided how to post to Facebook... The RSS feed is flaky (see dispute link above) and it's already given me trouble today. I may just have use an old fashioned cut+paste...

I hope everyone had a Happy Mother's Day. Mine, like most days, had its moments of supreme joy and moments where I wanted to stab myself in the face*. It's the hardest job in the world... but I wouldn't trade it in for anything. Even chocolate.

Zoe and Quinn
Quinn and Zoe (in a rare, non screaming moment)

My Boys
Quinn and Wyatt

*Note: a turn of phrase, not an actual desire. Please, you don't have to call the experts, which would be me anyway, so relax. Really...
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