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Blog Hop: Everyone Wants To Party With Jake!…

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. Here are my thoughts for the fifth writing prompt, which is:

Comforts and Connections

Honestly? I think there are too many comforts and connections within this world of disability to adequately be able to write about all of them, or properly show appreciation for all of them.

The day we found out Jake had Trisomy 21 was not an easy day. I remember sitting on my hospital bed, doubled over in part from the physical pain of surgery I had undergone the day before, and in part from the emotional pain I was wrenched with. I recall weeping into my husband’s shoulder, clutching at him as though I were trying to save myself from falling over a precipice and into oblivion. Through the tears, I heard myself sob “no one is going to want to come to his birthday party”.  I. Could. Not. Have. Been. More. Wrong.

The comforts and connections we have made on this journey so far have been so far beyond my hopes and expectations. Blessings like:

* Family who support us unconditionally
* Friends who don’t see the disability, but rather see Jake
* A “club” of other peeps who are walking the same journey, whether in person or online
* PREP staff (this is the organization we have done a lot of our Early Learning Intervention through. they are amazeballs. we love them)
* A health care system that can support our child through the medical issues, specialists who are proactive and preventative, and government systems set in place to provide assistance (okay, nothing is perfect, but we are still thankful for what support there is!)
* The normalcy of life. We still live our lives the same way we would have without a Down syndrome diagnosis. Sometimes we have to modify a little, but we are living life with three kids 3 and under to the fullest!

At the end of the day, however, the biggest comfort I take is found in Jake himself.

Comfort in every milestone hit, no matter how early or how late.
Comfort in every advance, every plateau, every valley.
Comfort in the little things. Like every night when he sits by his door and yells “mommy, mommy, mommy” under the crack in the door until I come in. With a smile on his face that would melt the coldest heart, he reaches up, takes my hand, and leads me over to his bed, where he proceeds to push me until I lay down beside him. Seeing that I am going to lay with him, his face erupts into the biggest grin and he lets out a belly laugh of glee, and then snuggles into me, playing with my hair and kissing my face repeatedly.
Comfort in knowing that Jake is who he was meant to be, that his life has meaning and purpose, that he loves and is loved.

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Oh, and everyone who knows Jake wants to party with him!

 
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Posted by on August 29, 2014 in Uncategorized

 

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Blog Hop: The “Mis” is the Matter…

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. Here are my thoughts for the fourth writing prompt, which is:

Challenges Related To Disability

A couple of provisos to this post are necessary from the outset.

First off, I do not have a disability myself. I am writing this post from the perspective of a mother of someone with a disability. What follows, then, are my thoughts concerning the challenges related to disability from a caregiver’s perspective. My hope is that down the road, Jake will be able to speak to the challenges that he faces. In the meantime, this is my take.

Secondly, the phrase “challenges related to disability” can be taken many ways. I chose to write about it in broader terms. Yes, there are daily challenges as well. But echoing my sentiments in one of my previous posts for this blog hop, in terms of the day-to-day challenges, “you do what you gotta do”. With that in mind, my take on the topic “challenges related to disability” is as follows:

In my mind, the “mis” is the matter.

Confused? Let me explain…

The prefix “mis” indicates “wrongly, badly, or unsuitably”, suggesting that whatever follows it was done wrongly, badly, or unsuitably. To me, this is the crux of the challenges related to disability.

As I was thinking about challenges, words kept popping into my head. It started with misperception. Looking back and evaluating our life so far with Jake, I was pleased to realize that we have not had many negative experiences where people are downright rude, mean, or cruel. There have been many times, however, where the perception of Down syndrome or of those who have a diagnosis of Down syndrome has been wrong, has been bad, has been unsuitable. Stemming partially from historical and cultural perspectives on Down syndrome, partially from misguided stereotypes of individuals with Down syndrome (see, there’s the “mis” again, and I didn’t even do that one on purpose!), and partially from a lack of exposure to individuals with Down syndrome, perceptions of Jake often preexist getting to know Jake. The misperception is the biggest challenge, as it is not only a matter of introducing people to Jake, but it is also a matter of undoing the faulty perceptions that previously existed.

From the humble beginnings of misperception, the “mis” words started to take off in my mind.

Misjudged. Misbelief. Misguided. Misinterpretation. Misconception. Misrepresented. And the list goes on. What it all boils down to, however, is that the “mis” is the matter. It is for this reason that I feel advocacy is so important. It is for this reason that I am constantly on the lookout for opportunities to make Down syndrome a normal part of life for those we come into contact with. It is for this reason I welcome questions, dialogue, and conversation. It is for this reason I blog every day in the month of October, in an effort to raise awareness of Down syndrome, and ultimately change the misperceptions that I see all around me in daily life.

In speaking of the challenge of the “mis”, I do wish to clarify something very important. While I do believe that most people have a misperception of Down syndrome (I know I sure did before I had Jake), I do not wish to come across as though I am mad at everyone who does not see Jake exactly as I see him. I am in no way mad or angry at the world, at my friends, at the people in Jake’s life. In fact, the opposite is true. I am so grateful for the village that we have who are helping to raise our children. I put it out there as one of the biggest challenges for me because it is. Every day is a challenge, every day a new opportunity to teach, to correct, to advocate, to get rid of the “mis” and correct the perceptions. Sometimes I find incredible joy in the task set out for me. Other days, it is an incredibly hard challenge.

At the end of the day, however, I will fight until the day I die to lose the “mis”, so that we all learn to see Jake, and disability in the broader sense, in a better light.

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Posted by on August 22, 2014 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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Blog Hop: You Do What You Gotta Do…

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.  So here are my thoughts on the second prompt, which is:

Coming to Terms With Disability

In my experience, “coming to terms with disability” is circular, not linear.  I don’t feel there will ever be a time in my life when I have “come to terms” with disability and no longer wrestle with various aspects of it.  My journey has been extremely circular.  I struggle, I grieve, I work through issues, I am content, something else happens, I struggle, I grieve, I work through more issues, I am once again content, and the cycle continues.

“You do what you gotta do…”

When it comes to dealing with a disability, at the end of the day, whether in a season of struggle, grief, or contentment, you do what you gotta do.

Last weekend we were camping with my sister and her family.  We decided to go out for dinner one night.  We chose a nice, family restaurant (with eight boys you’ve gotta go family friendly!) and sat down.  Thankfully, spaghetti was on the menu.  Jake is such a picky eater that we regularly order spaghetti if we are out, because we know it is his go-to meal.

Everyone ordered their food, and we waited for what seemed to be an inordinate amount of time, considering it was approaching 7:30pm and the kids were starving and hangry (for those of you who have never heard the term “hangry”, it is when you get so hungry that you become angry!)  Finally, the food came.  I was at one end of the table with Cole, and my husband was at the other end with Jake.  The waitress handed him the spaghetti, and he began to cut it up, putting half of it into a bowl for Cole and leaving the other half for Jake.  And that is when all hell broke loose.

We don’t know why, but Jake would NOT eat the spaghetti.  He screamed.  He cried.  He whined.  He complained.  “Spaghetti, spaghetti”, he exclaimed over and over again, but would not actually take a bite.  My husband was beside himself trying to figure out what went wrong and how to fix it so that he would eat dinner.  He probably spent about half an hour trying to coax Jake into taking a bite.  Jake’s lack of reasoning abilities, slower comprehension, and inability to express himself verbally brought his disability to the forefront in that moment.  It climaxed with a temper tantrum, at which point he actually took him out of the restaurant.  When he brought him back in a few minutes later, Jake slumped into his chair, clearly mad at the world (and probably starving) but still would not eat.  Then, for whatever reason, he licked the spoon.  He stopped, thought about it, licked it again, and then out of nowhere, picked up the spoon, dug into the spaghetti, and dug in ravenously.  He did not stop until the whole bowl was finished.

At one point, my brother-in-law leaned over to my husband and told him that he didn’t know anyone else who would have had the patience to be able to handle that situation.  While I think that is a testament to my very patient, amazingly understanding husband, it also struck a chord with me.  We were debriefing the incident later, trying to figure out what prompted it and how we could avoid it in the future, and saying how frustrating the ordeal was.  But, at the end of the day, we decided that Curtis just did what he had to do to mitigate the situation.

Whether it is having some sort of supernatural patience that allows you to work through issues that arise, whether it is driving your kid around in the car for an hour because he will not fall asleep when we are camping unless we are driving around, or whether it is taking your kid to countless appointments, specialists, and early intervention to help your child grow and develop, at the end of the day, coming to terms with disability means that you do what you gotta do.

Sometimes you don’t like it.  Sometimes it’s hard.  Sometimes it hurts.  And sometimes, the disability disappears as you see your kid for who they are, and there are countless moments of joy, celebration, and normalcy.  And just when you think you’ve come to terms, you’ve made it, you’ve arrived, another incident occurs, and the cycle continues!  So for me, coming to terms with disability is an hourly, daily, weekly process, as I continue to learn that…

“You do what you gotta do…”

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Posted by on August 14, 2014 in Uncategorized

 

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Wordless Wednesday ~ My Happy Place…

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Posted by on August 13, 2014 in Uncategorized

 

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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:

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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.

 

 

 

 
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Posted by on July 29, 2014 in Uncategorized

 

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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.

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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!

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Posted by on July 21, 2014 in Uncategorized

 

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