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The Space In Between…

It is currently November 4, and I feel stuck in the space in between.

Last week was buzzing with excitement. The anticipation of Halloween was in the air! I was frantically working my fingers to the bone to sew four Halloween costumes for my littles (good Lord let me just tell you, when you have 4 kids, the last thing you should be doing is sewing all of their Halloween costumes! Lesson learned…). The neighborhood was breaking out their Halloween finest, my kids were daily shrieking with the excitement of seeing new decorations, and my oldest three were chattering nonstop about being Batman for Halloween, saying “trick-or-treat”, and getting candy! Halloween night was so fun this year; the older kids really understood the concept of trick-or-treating, and you could see the wonder in their eyes as their goodie bags continued to get more rotund with every stop that was made.





Next week (after Remembrance Day) is my absolute favorite time of the year! The Christmas festivities begin very early in our house, so that we get the most out of the season. Music, lights, decorations, traditions new and old, and the look on my children’s faces as they experience the holiday season. I am barely holding in my own excitement:)

But today? Today I feel stuck in the space in between.
It’s being in limbo.
It’s finishing one celebration and waiting for the next one to arrive.
It’s the let down after the excitement.

It’s also the space to catch your breath, the time to process, evaluate what has passed and look forward to what is ahead. The chance to relish the memories of the past, and dream about the possibilities of the future. The space in between is an important time.

I write this because I feel the strain of this space in between in life, but I feel it even more strongly when I think about my role as an advocate for Jake.

When we were just starting out on the journey, everything was new. I blogged like crazy, partially because I was processing things for myself and blogging was a good outlet for me, and partially because I was advocating in the best way I knew how. I documented everything – my thoughts, feelings, circumstances that arose, situations we encountered, milestones accomplished, conversations spoken, and so much more. And it was exciting, it was cathartic, it was good and purposeful and meaningful.

In this season of life, however, I feel like I’m the space in between.
I don’t always know what to blog about anymore. I don’t feel as much pressure to convince the world of Jake’s worth. (I think you all know how absolutely incredible and amazing he is, and you see his worth without me having to push my agenda on you!) The old season has passed, and the new season is coming. I’m not exactly sure what the new season of advocacy will hold, however, and so I feel in limbo.

And while I don’t love the feeling of being stuck, I am also grounding myself in it, processing what lies behind and what lies ahead, and waiting with eager anticipation to continue to see what this new season of advocacy will look like! I think the changes will be subtle, and I will continue to advocate for Jake and promote awareness and acceptance until the day I die! But I am excited to see the new forms it will take:)

 
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Posted by on November 4, 2016 in Uncategorized

 

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When The Problem Is Me…

Summer has finally arrived in Canada!

My kiddos are loving the backyard this summer. They spend hours running through the “elephant” sprinkler, playing in their backyard playhouse, and soaking each other in the water table. Jake, of all three of them, is particularly taken with the water table. He can typically be found either standing in front of it, dunking his head under the water and then laughing maniacally, or sitting in the table itself, soaking himself to the core and having the time of his life! It is not unusual for all three of them to be playing at the table together, throwing water on themselves and each other and shrieking with glee.

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Cole’s expression here cracks me up!!

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The other night we had some friends over, and Jake, in typical Jake fashion, was playing at the water table. He had gotten creative however, and decided that dumping a load of dirt in the water and stirring it around was a great idea. What he was left with was more of a muddy mess than a pristine water table. Details like that don’t seem to bother him though, and so he stood there playing happily, oblivious to the dirt and grime.

Enter our adorable little friend. He wanted in on the action, so he waddled over and stood beside Jake at the water table, eyes wide open taking in the scene before him. I don’t know exactly what he was thinking, but I’m sure it had some sort of resemblance to a kid in a candy shop.

Water = Good.
Mud = Good.
Playing with friends = Good.

Until Jake dumped a bucket of water on him. All. Over. His. Face.

To his credit, this cutie pie didn’t utter a cry! He took it in stride (I’m pretty sure he’s going to be a great big brother some day!!) and after the initial shock to the system given by that cold, muddy water, he was back on track and ready for fun. His parents cleaned him up, we changed his clothes, apologized profusely, and all was right with the world again.

Except, for me, it wasn’t.

I felt overly embarrassed.
I felt ashamed of Jake’s behavior.
I felt the battle, the conflict, the war that wages in my mind whenever Jake has some sort of misdemeanor.

On the one hand, I am defensive for Jake. I want to jump in and defend him. I want to explain his actions so that people understand him. In this instance, it was not that he was a malicious little boy who likes to be mean and dump water on people’s heads, but that he was simply a little boy who loves playing in water with his friends, and didn’t have any impulse control to stop and think about the possible consequences of his actions.

On the other hand, I crave equality. I strive to treat my child with Down syndrome the same way I treat my other children. I make them apologize, give them a consequence for their actions, and explain to them why we do not act that way.

On a third hand, I recognize that Jake is a four year old. I have watched four year old children, and they are not always nice. Down syndrome or typical, Jake is a toddler, he is learning about the world around him, and he is attempting to understand, as far as he can, how to work within it. I also recognize that while Jake is chronologically four years old, developmentally he is much younger.

On a fourth hand, I feel protective. I never want to put Jake in situations where he might do something wrong. I have this desire for Jake to only show his cute, perfect, well-behaved, good-mannered, social, humorous, winning sides to people, so that they can see past Down syndrome and see my child. My beloved.

I left the encounter feeling disappointed and discouraged. It wasn’t until later on that evening that I realized what the problem was.

The problem was not Jake. He was simply being a kid who pushed the boundaries, and dealt with the consequences.

The problem was not the parents. They, while most likely being slightly annoyed, were also very gracious and thought nothing of it.

The problem was me.

Sigh…
I guess I have some work to do…

 
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Posted by on June 26, 2015 in Uncategorized

 

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Blog Hop: Joy Comes With The Morning…

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.

The third prompt is to write a letter to my younger self.  I contemplated starting from scratch, but the more I thought about it, the more I realized that I wanted to use the letter that I have already written.  So, this is a little bit of a cheater week, since it’s not actually new material.  For those of you who have read it before, I’m really sorry that it is redundant, but for the sake of the blog hop, here it is again!  Oh, and also, I’m posting some new pics of my kiddos, so at least if you’ve read the letter, you can skip down to the cute pictures!

A Letter To My Younger Self

Dear Slightly-Younger-Karyn,

It’s me…you!  Well, the version of you that is slightly older and more weathered, but possessing a deeper resiliency and a blessed contentment.

I wanted to share a few thoughts with you.  Chances are, you won’t listen.  You are stubborn that way.  Chances are, you will discount this letter, and find your own way through the journey that lies ahead for you.  That is okay.  I don’t take offense.  I (we) have come a long way in developing thick skin.  Looking back though, I wish I had known then what I know now.  So, it is for that reason I am writing to you.

Congratulations!  You just got back from your honeymoon a couple of weeks ago, and tonight you found out you are pregnant with your first baby!  I know you have waited a long time for this part of your life to begin, and I am so happy for you.

In the next couple of months, you will start questioning your pregnancy.  You will think thoughts that others will tell you are crazy, paranoid, and unfounded.  You will question whether or not your baby has Down syndrome.  You will be convinced in your heart that there is something wrong.  Everyone else will tell you that you are overreacting.  You. Are. Not. Crazy.  You have an intuition that I believe was put there to help ready you for the journey of motherhood you are about to embark on.  Trust your gut.

This new little miracle that you are currently growing does, in fact, have a diagnosis of Down syndrome.  Prepare your heart for this.  Allow yourself to grieve the loss of what was imagined, but allow yourself also the opportunity to celebrate as your firstborn son enters into the world (spoiler alert: you are having a beautiful baby boy!).  Most importantly, know this: the sorrow may last for the night, but joy comes with the morning.

If I could only show you what a difference two and a half years can make, you would go into this delivery with such confidence, with such peace, and with such joy.  You would know that, while life may look different than you originally intended, it is also in many respects the same.  You have the same powerful love, the same fierce pride, and the same “mama bear” protectiveness as you will have for all your children.  You would grasp that, while having a child with a disability is challenging, often sorrowful, and at times unfair, it is also beautiful, redemptive, and worth every second.

Oh, and one more thing: cut yourself some slack.  You will be the best mother that you know how to be.  You will often be too hard on yourself, or demand more of yourself than is humanly possible.  This is one area that I, your future self, am still working on.  But I’ll give you the same admonishment that I give myself: cut yourself some slack.  You are doing your best.

I hope this helps in some small measure, as you journey through the coming months and years.  I don’t pretend to have arrived, but I felt this was information you needed to know.

Oh, and he is beautiful.  And perfect.  And he makes my heart swell with pride every day.  Enjoy him:)

Sincerely,
Future-You.

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Posted by on August 17, 2014 in Uncategorized

 

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The Club…and The Collarbone…

The Club…

I belong to a club of sorts.  The T21 club (Trisomy 21).

I did not ask to join.  In fact, I had no desire to become a member.  Since my initiation into this club with the birth of my firstborn son however, I have embraced and accepted my inclusion and participation.  I have found deep comfort, encouragement, and support.  I have allowed its members to embrace me in the midst of my brokenness, and I hope to be able to do the same for others who are continuing to join this club.

The other day, we had the opportunity to meet some new friends!
I have been following the blog of a fellow member of “the club”.  Her name is Anna, and her blog is Rockin An Extra Chromosome.  We have been following each others’ blogs, and when she mentioned in one of her posts that she occasionally makes the trek into Calgary, I got really excited and wanted to meet her!

Her and her husband and their precious little girl Stella came into the city for an appointment the other day, and we had a chance to meet up at the hospital.  It was so great!  Stella is about 8 months older than Jake, and it was such an encouragement to me to see how well she is doing, how fantastic her communication skills are, and how much joy she brings to those who have the privilege of knowing her.  I felt an instant connection with Anna, and feel blessed to be able to share a part of the journey with such an amazing family.  Oh, and I also think that Stella and Jake made a pretty cute couple:)  (Anna and I are matchmaking already!!)

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…and The Collarbone…

Last night, my hubby and I were dropping the kids off at my sister’s house for a night on the town.  While we were there, Jake, in his anxiousness to go play with his cousins, climbed up the stairs (something he is completely capable of doing) without us noticing.  He then proceeded to somehow fall down the stairs (he is also quite capable of going down the stairs, so I’m not exactly sure what happened…) and cry uncontrollably for the next hour.  One trip to the Emergency room later, we have an official diagnosis: Jake broke his collarbone.  Poor little guy:(

Fortunately, he is quite resilient, and although I know he is still in some pain this morning, he has also been his typical self, throwing Cheerios off his high chair, trying to push a laundry basket around the house, and pulling Cole’s hair!   And I will admit, he is pretty adorable in that tiny sling of his…(sorry for the crappy picture quality, they are just off my phone)

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Posted by on February 28, 2013 in Uncategorized

 

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