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Make a Joyful Noise…

…because Jake can hear it!

Yes friends, you read that right. My son can hear!

The journey has been arduous. The saga has felt unending. The obstacles have seemed insurmountable.

From the time Jake was a tiny babe of 5 months old, we knew that he had conductive hearing loss, due to fluid build-up in his ears. For the past four years, we have waited for those tiny ears to grow, so that tubes could be inserted to drain the fluid. We have struggled with hearing bands, hearing aids, more hearing tests than we could ever have imagined, failed surgeries, and so much more. Last month, we finally got tubes for Jake, the fluid was drained, and it was waiting time to see if it would actually work.

Super early on in the journey! This is called a "Baja headband"...basically does what hearing aids do but less intrusively!

Super early on in the journey! This is called a “Baja headband”…basically does what hearing aids do but less intrusively!

Last week we had a follow-up hearing test at the hospital. These hearing tests are sometimes hard for Jake, as they require a lot of attention, and to sit still and follow instructions for long periods of time. The last test we had was deemed inconclusive, since he had a hard time cooperating. This time, however, he rocked it! He had an audiologist administering the test, and another one in the sound-proof room with us, helping him focus and concentrate.

When the test was done, the audiologist came in from the booth, looked at me with a smile, and told me that he had done a fantastic job. She then showed me his results, and he was in the normal range across the board!! Not only that, but she officially told me that Jake no longer needs his hearing aids! I looked at her, turned to Jake, and gave him a great big bear hug, tears of joy streaming down my face. It was such an amazing moment, to see something come to fruition that we have hoped for and prayed for during these four long years.

We will consistently go for follow-up tests, to make sure that everything is on track in the hearing department, but Jake has been officially discharged from the hearing aids, and declared to be in the normal range for hearing.

So make a joyful noise! We sure are…!!

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Posted by on August 5, 2015 in Uncategorized

 

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Fifty Shades of Grey…

Disclaimer: This post has nothing to do with the book series / movie series “Fifty Shades of Grey”. But I bet I piqued your curiosity!

It often seems as though the older I get, the more I realize that life is not lived in the black and white that I used to imagine. Life, at least in my experience, is often lived in the shades of grey, the places in between, the fuzzy, messy jumble that comprises the middle. This has been clear in so many aspects of my life, but rings true again and again when it comes to Jake and his care.

When we were brand new on this journey through the world of Down syndrome, we clung to the black and white. We thrived off the “when…then…” mentality that was often mistakenly portrayed to us by medical professionals who were trying to provide us with the hope that we so desperately craved in those early days.

We found out when Jake was just a wee babe of 5 months old that he had substantial fluid build-up in his ears, and that as a result, he had some temporary hearing loss. The “when…then…” statement went like this: “when we can put tubes in Jake’s ears, they will drain the fluid out, and then he will be able to hear at a normal level”.

Sounded easy enough to us newbies. We clung to that statement for dear life. It was black and white. When he gets tubes, he will be able to hear. It seemed so reasonable, so simple, so comforting.

Now, four years later, here’s what we’ve learned:

– It took four years and five tries just to get the first set of tubes into his ears, as they were so incredibly tiny that the tubes were too big
– The tubes, once in, are not a surefire answer. There is the possibility they will not stay in. There is the possibility they will only last for a couple of months and then fall out. There is even the possibility that they won’t do the job properly (since Jake’s ears are still super tiny) and that fluid will remain
– Even if the tubes do their job perfectly, it is possible, because of the tiny nature of Jake’s ears, that he will always have some sort of hearing deficit. That he will always require hearing aids.

First time attempting tubes! Look how tiny he is:)

First time attempting tubes! Look how tiny he is:)

So much grey. So many unanswered questions.
In the midst of the uncertainty, however, we celebrate the small victories.

A few weeks ago, after four long years of waiting, Jake finally got his first set of tubes!!
And wanna hear the even more exciting news? So far, they seem to be working. It looks as though Jake’s hearing has improved!

A couple of weeks ago. 5th time's a charm baby!!

A couple of weeks ago. 5th time’s a charm baby!!

Anecdotally, and through a very preliminary (albeit slightly inconclusive) hearing test, it has been proven several times over that Jake can hear better. He responds to requests when I whisper instructions to him (he never used to do this). He even heard me whisper a command and followed through with it when he couldn’t see my face, and therefore was not able to see that my lips were moving. In a follow-up hearing test last week at the Children’s Hospital, the Audiologist said that when she did the test with voice recognition, he scored in the normal range for hearing! (the test was inconclusive, however, because he wouldn’t cooperate for the non-verbal part of the test, which measures frequencies, pitches and technical noises).

We are elated, we are overjoyed, we could not be happier! Our baby boy is hearing better, and this brings us so much joy.
In the midst of the excitement, however, we are pulled back into the grey…until there is solid, concrete, evidence that spans a much longer length of time, and proves that Jake’s hearing is completely within the normal range once and for all, we still have hearing aids. We still have regular ENT appointments. We will likely need more tubes down the road.

It’s not black and white. But we are smack dab in the middle of the grey, throwing a huge party and celebrating the victories!

 
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Posted by on July 6, 2015 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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Happy World Down Syndrome Day 2015!…

Happy World Down Syndrome Day (WDSD)!

We celebrated in our own little corner of the world this morning, as our family of 5.

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Then we drove to the airport, and celebrated with a larger slice of our family and friends.

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After that, I kissed my kiddos goodbye, cried over their sweet heads, wrapped my arms tightly around their little necks and showered enough love on them to last for the next 10 days.

And now I am off to Guatemala, decked out in my “321” shirt, excited and full of anxious anticipation for what this week has in store.

The image in my head today is represented so well by this photo:

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Isn’t this the greatest picture?
Love. Security. Community. Family. Solidarity.
We are so blessed by our family and friends. The outpouring of love for Jake and for our family is amazing, and we do not take that for granted.

And that’s part of why I am going to Guatemala.

This picture stands in stark contrast to the lives of many people with disabilities in other countries; people who are not treated with dignity, respect, or equality in any way.

I have a vision.
A vision to bring reconciliation.
A vision to instill dignity.
A vision to see an outpouring of love and a new cultural perspective towards people with disabilities.
In Canada. In Guatemala. Worldwide.

One. Person. At. A. Time.
Won’t you join me?!

 
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Posted by on March 21, 2015 in Uncategorized

 

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The Very Hungry Caterpillar…

My baby is ONE!!

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Where, oh where, did this year go?

A year ago today I was gearing up to celebrate World Down Syndrome Day, much like I am gearing up for tomorrow’s celebration. But I was extremely pregnant! My life with two kiddos was quickly coming to an end, as I was anticipating the arrival of our third child just a few short days later.

Noah’s birth was shrouded in mystery.

We didn’t know if he was a boy or a girl, until that precious moment, seconds after we heard his tiny little wail for the first time, when the doctor peered her head around the curtain as I lay on the operating table, and exclaimed “it’s a boy!”

We didn’t know what to name him. We were actually so certain that he would be a “she” that we only had girl names picked out! He remained nameless for the better part of a day while we picked out the perfect name for him: Noah Brooks Slater.

We didn’t know what a perfect fit he would be in our family:)
Noah has his own very unique personality compared to his other two brothers, and complements them so well. He is doted on by his big brothers, and as he is beginning to exert his own independence, it is so cool to watch the three of them interact and play together.

So, in honor of my baby boy’s first birthday, here are a few pics from our “Very Hungry Caterpillar” birthday party!

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Happy Birthday Noah:)
We love you so much.

PS. Tomorrow is World Down Syndrome Day (WDSD2015)!! Don’t forget to wear yellow and blue in support of our family and of Jake! And don’t forget to post your pics and tag me in them:) Thanks friends!

 
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Posted by on March 20, 2015 in Uncategorized

 

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World Down Syndrome Day 2015…

World Down Syndrome Day 2015 (WDSD) is quickly approaching.

This is a day to celebrate those individuals, such as my son Jake, who were born with an extra chromosome.  It is a day to raise awareness, to call for acceptance, to promote inclusion, equality, and respect for individuals with a diagnosis of Down syndrome.  It is a day for our family and friends to be able to celebrate Jake’s life.

WDSD is on March 21.  This date was chosen with purpose:

Down syndrome is also known as Trisomy 21.
Trisomy 21 is 3 copies of the 21st chromosome.
Hence 3/21 = March 21 = World Down Syndrome Day!

This year, WDSD is bittersweet for me.
On March 21, I will be leaving on a jet plane, instead of at home with my family, celebrating WDSD together.

On the one hand, I am disappointed that I won’t be here to celebrate Jake in person. On the other hand, I am so excited to be able to celebrate while in transit to Guatemala, where I will spend the next week and a half volunteering at a school for kids with special needs.

A school that probably has no idea what World Down Syndrome Day is.
A school that is desperately trying to teach the community around them about the value of persons with disabilities.
A school whose teachers pour out their hearts (and often their pocketbooks) to push for a higher quality of life for their students.

Can you see the amazing weaving together of situations, circumstances, and events in my life?
I can’t look at the bigger picture without recognizing its providential nature.

So, whether you are near or far, would you stand in solidarity and support with us on Saturday, March 21!

The official colors for WDSD are BLUE and YELLOW.
I will be wearing my own “321” shirt, my children will definitely be decked out in theirs, and we would love it if you would wear blue and yellow with us!
We would also love to feel connected to you as a larger community.

Send me an email copy of your pics! (www.321joyshop@gmail.com)
Post them to Instagram and tag me in them: @karynmslater
Post them to Twitter and mention me: @karynmslater
Post them on Facebook and tag me in them: Karyn Slater

Thanks friends, both near and far, for the continued and unending support

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Posted by on March 7, 2015 in Uncategorized

 

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An Open Letter to the Target Employee We Met Today…

Dear Target Employee,

As I walked past Target today on a mission through the mall with my three little ones in tow, thoughts flashed through my mind. Your employers have been in the news a lot lately, what with the announcement of the closing of all the Target stores in Canada, and all the politics that have been dredged up as a result. Doing my best at multitasking, handing my children fishy crackers by the fistfuls, coaxing them to sit in the stroller while dashing in and out of stores, I simultaneously thought of you. Not of you specifically, but of you, the Target employee. I wondered where you would go, what you would do for work, how this would affect your life, your family, your livelihood. I felt bad for your situation.

On my way back past your store, my oldest son took a detour from the path well-traveled, darting into your store and yelling “Ready…Go!” at the top of his little lungs, as he pretended he was in a race against the fastest legs in town. And when I, having been alerted to the seriousness of the situation as I watched him travel further and further from the stroller, ran to turn him around and usher him out of the store, he proceeded to have an epic meltdown. In the middle of your store. With everyone watching, staring, judging. Since he does not have a large vocabulary, he was unable to use his words to explain to me where he was headed, but I knew. Your escalator was calling out to him, drawing him in with the memory of the thrill he had experienced on its hallowed stairs just a couple of short days earlier.

I feel for my son. He often gets frustrated that he can’t express himself better. He doesn’t always understand my decisions. He knows what he wants, and he gets mad if it doesn’t come to fruition. Part of that is natural for a 3 year old. Part of that is exacerbated because he has Down syndrome. It must be an incredibly difficult place to live. Regardless, however, it is also hard to have to deal with the fallout. Especially in public.

Enter…you.

You saw my situation. You looked at my other two children, sitting alone in the stroller, waiting for their mommy to restore order and security. You noticed the exhaustion on my face as I bent down to my child’s eye level and attempted to reason with him. You must have recognized that my son has a visible disability, one that would cause many to turn a blind eye or shy away from an already escalated scenario.

And yet you entered. You called out to my son. You walked over, bent down, talked to him, and took him by the hand. You led him over to the checkout, and let him scan the items, just for fun. You diffused the situation for me. You distracted him, calmed him down, and gave him back. You saw the situation for what it was ~ the temper tantrum of a 3 year old who wanted his own way ~ and not for what is often read into similar situations ~ the misbehavior of a child because of a disability.

And most of all, you treated him with dignity.

From the bottom of my heart, thank you. Thank you for superseding your own situation to step into mine.
You will never know how much your gesture meant.

Sincerely,

The frazzled woman with the runaway kiddo.

 

And…a couple pics for you too!!

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Posted by on February 3, 2015 in Uncategorized

 

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