RSS

Blog Hop: I Was Blind, But Now I See…

In the Down syndrome blogging community, something called a “blog hop” is happening this summer, hosted by Meriah, the author of the blog A Little Moxie.  The point of said blog hop?  To get bloggers, such as myself, to write posts specific to issues surrounding disability.  To get us thinking, to get us reflecting, to get us capturing thoughts, feelings, and emotions surrounding disability in a tangible form.  I am about a month late out of the gate, so I have some catching up to do.  The first post was to be an introduction about our connection to disability.  So, here goes nothin’!

My Connection With Disability: An Introduction

This guy:

IMG_4369

My present connection with disability is this guy.  This three year old, bundle of energy, joyful, passionate, unbridled little boy who is my firstborn child.  Those of you who follow my blog already know how amazing this guy is.  For those who are new here, this guy is amazing!

My connection to disability didn’t start when my son Jake was born, however.

Let me preface this post with an admission.

I am ashamed.  I am deeply ashamed of what I am about to write about.  I have often considered this post, and discarded it before a word could be typed.  If I could go back and change my childhood thoughts and actions, I would in a heartbeat.

……

I was just a kid.
Every week, my parents would load us up in the car, and off we would go.  We would pull up to the house, unload, and the kids would be relegated to the basement, while the grown ups would congregate upstairs.  My parents would enjoy their couple of hours of study and community with their friends, and all of us kids would play downstairs.

I remember being outnumbered.  There were more boys than girls.  I didn’t particularly enjoy playing with boys at that stage of life.  I really only did it out of necessity ~ to elude the boredom that would ensue if I chose not to participate in whatever game they had concocted that night.

There was one boy who stuck out.  His name was Brendon.  He was different.  He didn’t catch on to our games as quickly.  He didn’t “fit” into my paradigm of what a kid my age should look like.  So because I feared the differences, I did not like him.  I don’t remember ever being outright mean to him, but subliminally I was mean.  I rarely spoke to him, I only included him when absolutely necessary or at the urging of our parents.  I remember trying to manipulate situations so that he and I did not have to interact.

This boy had Down syndrome.

I am not defending myself here.  I have cried long and hard at how inwardly cruel I was towards Brendon (and perhaps outwardly as well, although I seem to have blocked out a lot of those memories because they are hazy at best).  I am ashamed of my behavior and wish that there was a way I could go back and change it, redeem myself, make it right.  And Brendon, I know you will never read this, but I want you to know how incredibly sorry I am.

I will say this, however.  I do not remember anyone ever explaining Down syndrome to me.  I do not remember ever having a conversation about it, being able to ask questions, or having any sort of transparency around it.  I don’t remember open dialogue, opportunities to ask questions, or chances to learn about him or with him.  I just remember that I thought he was different, but there was never any further explanation given.

I hope, pray, beg, and plead with God on a regular basis that the kids with whom Jake already interacts, and will continue to interact with in the future, will be better than I was.  That they will be genuinely interested in a friendship with Jake.  That they will respect and value him, differences and all.  That they will take the time to get to know him, and see him for who he really is, not for how he differs from them.

This starts with me.  With us.  With knowledge.  With information.
Even now, I take every opportunity that I can to talk to the kids that Jake is playing with about Down syndrome.  To make it something tangible, something that is a part of their experience, something that they can normalize, absorb, and understand, so that they can treat Jake with the same dignity and respect they would show to any other peer.

I was blind.  I am deeply ashamed of that.  I am also deeply repentant.  Every fibre of my being desires to arm the coming generation with what they need to avoid becoming like I was at that age.

I was blind, but now I see.

 

 

 

 
Leave a comment

Posted by on July 29, 2014 in Uncategorized

 

Tags: , , , ,

Diggers, Dump Trucks, and Delight…

Our middle child, Cole, is obsessed with all things construction.

It is a fascination that has been ongoing for quite some time now.  It does not seem to be a passing fad, in fact, the longer he spends loving them, the deeper and more concrete his love for them grows!  (Side note: this obsession is fodder for my completely immature and childlike side ~ every time he says “dump truck” the word “dump” ends up sounding more like “dumb”, and the rest, well, you can figure out on your own!  Needless to say, it causes me to chuckle every single time it happens!).

As a result of this love of construction toys, we decided to go with the digger / dump truck theme for Cole’s 2nd birthday.  He. Loved. It.

So did I, but for different reasons.

I loved seeing my child’s face light up the first time we sang “Happy Birthday” to him, and he realized that the candles, the sparklers, the pomp and ceremony, the singing and cheering, were all for him.  The look on his face was priceless.

IMG_4486

I loved watching him make connections about traditions for the first time.  He knows now that on your birthday, you sing, you have cake, you open presents, you have a party.  I delight in watching him grow up and watching things start to stick with him in his memory.

I loved the look on his face as he was opening his presents.  The overwhelmed, “I can’t believe all these presents are for me”, “I’m so happy I don’t even know what to do right now” look of a toddler, completely reveling in the moment.  The look of pure delight.

Happy Birthday to my big boy Cole!  You are such a great kid, we love you so much, and we are so proud of you!

IMG_4480

IMG_0538

IMG_0555

IMG_0583

IMG_0609

IMG_0602

IMG_0624

IMG_0625

 
Leave a comment

Posted by on July 21, 2014 in Uncategorized

 

Tags: , , , , , ,

Sometimes it’s Okay…

Sometimes its okay to stay up late.

IMG_0380

IMG_0468

Sometimes it’s okay to let your kids eat junk food.

IMG_0485

IMG_0483

Sometimes it’s okay to get dirty.

IMG_0462

IMG_0460

IMG_0465

Sometimes it’s okay if your kids get angry.

IMG_0403

Sometimes it’s okay to push the boundaries.

IMG_0391

IMG_0450

IMG_0400

Sometimes it’s okay to dance like no one’s watching.

IMG_0433

IMG_0431

Sometimes it’s okay to snuggle your kids to sleep.

IMG_0439
Of all the above statements, this last one is the one that rang the truest for me this past weekend.  Jake woke up in the middle of the night, and started crying.  His noise woke up Cole, who was sharing a bed with him, and the two of them were whimpering “mommy, mommy” in the black night of the tent trailer.  Shivering, I crawled out of my toasty warm sleeping bag, crept my way across the tent trailer, and gingerly lay myself down on the bed in between them, careful to avoid tiny limbs in the process.  As soon as they felt my presence, they curled up to me, one on each side.  Both of them clung to me with their tiny arms, legs wrapped around my torso, and bodies snuggling into the curves of my frame.  “Kisses, hugs”, whispered Cole in the dark, and I willingly obliged.  And without another word, I felt both of their precious bodies begin to relax, their breathing become deeper and more regulated, until one by one, they sunk back into a deep sleep, releasing their death grip on me.  As I lay there in the dark, listening to my babies fall asleep, warmed by their body heat, I felt privileged to be a part of such a precious and fleeting moment.  Too often I am frustrated at the bedtime routine, but that night, I was stilled and calmed by the realization that sometimes it’s okay to snuggle your kids to sleep.

Sometimes, it’s okay…

 

 
Leave a comment

Posted by on July 10, 2014 in Uncategorized

 

Tags: , , , , , ,

Ringbearing 101…

Last weekend I had the amazing opportunity to celebrate with my friend and participate as a bridesmaid in her wedding.

This friend and I have walked a long journey together.  We have been friends for many years.  We have seen each other through boyfriends and breakups, through heartache and happiness, through loneliness and longing, and so much more.  She walked beside me as I entered the married phase of life, and has been there to hold each of my children as babies, and to be a part of the village that is raising my children.

And last weekend, I had the privilege to stand with her as she declared her vows to her new husband.
Oh, and did I mention that I was not the only member of the family to take part in her special day?  That’s right…Jake was a ring bearer for her ceremony!  And, he rocked it!

Ringbearing 101…

Use. Elmo. To. Get. Job. Done.

I wasn’t sure if Jake would actually make it down the aisle.  He gets distracted at the best of times, and I figured that with every seat in the house full and all eyes on him, he was likely to decide to play up to the crowd a little.  I do, after all, have a very social little boy!!

The bride, Merissa, however had a fantastic idea.  She thought that perhaps Jake just needed a little help to keep his eye on the goal.  And what better motivation than his favorite thing in the whole wide world…Elmo!  We gave one of Jake’s Elmo dolls to the best man, and when it was Jake’s turn to go down the aisle, he saw Elmo, his face lit up, and he bolted to the front to claim his prize!  So quickly, in fact, that he was not interested in stopping for the ring pillow, and so Curtis had to follow him down the aisle and turn over the rings!!  In the groom’s thank you speech at the end of the evening, he thanked Jake for his role as ringbearer, and he thanked Elmo, who made it possible!

It was a great day, amazing weather, and a joy and pleasure to be able to stand with my friend Merissa.  Congrats you guys:)

IMG_0332

Me and Noah:)

IMG_0329

My almost-two-year-old Cole!! What a big boy:)

IMG_0316

Ring bearer Jake! (who by this point was more interested in his fishy crackers in the bowl than in getting his picture taken!)

IMG_0336

This is the closest we could get to a family picture! When, oh when are we going to be able to just smile all together and look at the camera!!??

IMG_4376

Just goofin’ around! Jake loves it when he can see himself in the camera and plays it up a lot more!

IMG_0339

The beautiful bride Merissa, along with my great friend Julie. I love these girls!!

 
Leave a comment

Posted by on July 4, 2014 in Uncategorized

 

Tags: , , , ,

Bedtime, Bubbles, and Belonging…

Bedtime:

I wanted to express my gratitude and appreciation to everyone who chimed in about the battle of bedtime!  When I wrote my last post, I was literally at my wits end.  My kiddos wouldn’t sleep, wouldn’t stay in bed (they were sharing a room), and they were wearing me down night after night!

Thankfully, we have mitigated the problem, and we are doing much better!
After a hard fought battle, I had to admit defeat.  Perhaps my children are just not ready for that much freedom and independence!  So, much to my chagrin, we split them up again into separate rooms (Cole will now have to share with the baby).  I was still gravely concerned that separating them would not solve the problem of Jake getting out of bed and playing until all hours of the night, but it has!  I am pleased to say that my children have both adjusted really well since being separated, and will now go to bed at night with little to no objection!  Nothing is forever, and we may try and put them back together down the road, but for now, this is working, so why mess with a good thing?!

Bubbles:

I love watching the magic of discovering the little joys in life through the eyes of my children.
To me, bubbles are old hat.  To my children, however, they are a new experience, an expansion of the world as they know it.
I love the way their faces contort with concentration while attempting to master the skill of blowing bubbles, and then light up with delight upon the successful completion of said skill.  I think the pictures speak for themselves!

IMG_0056

IMG_0057

IMG_0065

IMG_0069

IMG_0053

IMG_0051

and Belonging:

Every year, Ups & Downs: Calgary Down Syndrome Association puts on a walk called “Street Meet” (somewhat akin to the “Buddy Walk” in the States, but on an infinitely smaller scale).  This year, we invited our extended family, we met at Fish Creek Park, did a 3K walk, and then had a BBQ, games for the kids, etc…
It reinforced to me the sense of belonging that we feel.  We belong within our families.  Jake belongs right along with us.  There is no distinction, no differentiation, no distance.  We belong.  We are blessed.

IMG_0175

IMG_0194

IMG_0207

IMG_0218

IMG_0220

 

 
Leave a comment

Posted by on June 25, 2014 in Uncategorized

 

Tags: , , , , , , , ,

You Win Some, You Lose Some…

I think I might be fighting a losing battle.

The battle of bedtime.

I feel battered.  I feel bruised.  I feel defeated.  I am losing this battle, and a little of my sanity as well.

A couple of weeks ago, we made the decision to switch Jake and Cole into toddler beds.  They have been sharing a room for a while now, and were doing great with the room-sharing, that is until they started being able to climb out of their cribs.  Correction, they could climb out of one of the two cribs in the room (the other one was deeper, and therefore too high for them to climb up and out of).  This new found freedom resulted in many nights of getting out of bed, turning on the light, and playing together.  Whoever was in the short crib (which was usually determined by who we deemed to be the most tired on any given night, and thus less likely to try and escape!) would entertain the other, throwing books, stuffed animals, and other assorted paraphernalia into the deep crib for their poor, trapped sibling.

After a few weeks of this, we decided that since they were hitting this stage, we should just take the plunge and transfer them into toddler beds.  I mean, they were already climbing out of the cribs, what difference would it make if they were climbing out of a bed?  Or so we thought…

As it turns out, I am at my wits end.  We are two weeks in, and while Cole has sufficiently learned that he needs to stay in bed and lie down, Jake is a completely different story.  He. Does. Not. Listen.  I can speak rationally.  I can yell.  I can flick his hand.  I can sit in the room and tell him to lie down every time he tries to climb out of bed.  I can hold him.  I can rock him and sing to him.

Nothing. Works.
Nothing.
He thinks it is funny.  He thinks it is a game.

As a parent, I feel like I should be able to be victorious.  I should be able to figure out a way to get through to my child.  After all, Cole learned the lesson quickly.  But this is a battle that I am losing by a landslide.  And I don’t know what to do.  How much of this is personality related?  How much is related to a diagnosis of Down syndrome?  What can my child comprehend or not comprehend?  Is he too young?  Am I just making excuses for him?  There is a part of me that feels like a failure because I am seemingly unable to get through to Jake regarding the proper protocol for bedtime.

You win some, you lose some.  I seem to be losing this battle.  But mark my words, although I may experience some significant setbacks, I will eventually win the war!  In the meantime, however, ANY ADVICE would be appreciated!!  How do I teach my kid to stay in bed?!

IMG_4166

IMG_4171

 

 
2 Comments

Posted by on June 17, 2014 in Uncategorized

 

Tags: , , , ,

Techie Toddler…

I officially have a techie toddler!

I have also learned an important lesson about Jake’s capacity for learning.

I would have pegged my oldest son as the guy who takes a while to catch on.  There are some things we have been working on for over a year that he still doesn’t get, like needing to stop and hold hands before crossing the road.  But give the kid an iPad with an interactive game, and the myth about being a slower learner is completely and utterly dispelled!

I. Was. Shocked.  I could not believe how quickly Jake caught on to the first game I showed him on the iPad.  It took all of about 5 minutes for him to understand the concept, grasp what he was supposed to do, and get down to work!  And the smile on his face when he did what was asked of him correctly and the pomp and ceremony from the game ensued, well that was worth a million bucks:)

In no way am I anticipating that the iPad will take over the time I have spent doing activities with Jake and helping him to learn.  In no way am I viewing the iPad as a babysitter ~ he knows he only plays it when I am there with him.  In no way am I allowing the use of technology to eclipse all the great life lessons that can be learned in other ways.  But…all the dangers of technology aside, I also believe it can be a very effective tool.  And apparently, Jake thinks so too!!

 

What are some of your favorite educational apps for your little ones?

(for those of you who are interested, this is Jake’s favorite app so far.  It is called “Endless Reader” by Originator Inc.)

 

 

 
Leave a comment

Posted by on June 12, 2014 in Uncategorized

 

Tags: , , , , , ,

 
Follow

Get every new post delivered to your Inbox.

Join 671 other followers

%d bloggers like this: