[31 for 21] ~ A Lot Can Happen In a Year…

A lot can happen in a year.

Just one of the unforgettable kiddos I had the pleasure of meeting in Guatemala.

Last year in October I wrote a two-part post series.

The first post (which was titled “Begging For Dignity”) was about a school for children with disabilities, located in Guatemala. In this post, I talked about how I have visited this school, how I have wept at the plight of those with disabilities in Guatemala, and how I left a piece of my heart with the students and teachers there when I visited 2 1/2 years ago (Just as an update, I had the opportunity to go back there this past March and spend a week working in the school, and once again, it was inspiring, heartbreaking, passion-renewing, and life-changing).

One of the first two items I ever sold in my store, “321 Joy”!

The second post (which was titled “Here’s Me, Leaping!!”) was about what I hoped to contribute to this school. In this post, I explained that I had started an Etsy store, and at the time of the post, I had 2 items for sale in my store! They were “321” shirts, in honor of Down syndrome awareness (3 copies of the 21st chromosome), and I was planning on donating a portion of the proceeds from the shirts to the school in rural Guatemala.

I remember distinctly writing this phrase in that post:

“This could flop. I am well aware of it. I mean, I think the shirts are adorbs, but come on, I made them for heaven’s sake, so I am a wee bit biased! Regardless of the outcome, however, I really felt as though this was something I needed to do, to step out of my comfort zone and take a leap of faith. So, here’s me, leaping!!”

A year later, I am so pleased to let you all know that it has not been a flop!

In fact, my Etsy store, which I have named “321 Joy” (click HERE for the link to the store or HERE for a link to 321 Joy’s Facebook page) has been a great success (at least in my books!)
I have sold close to 150 items. I have had 73 different items go through my shop, and currently have 49 items for sale. I am getting the chance to use some of my creative abilities, and am really enjoying the outlet (and the change of pace from changing diapers and cleaning up messes all day!). And most importantly, I am donating 10% of every order I get right back into the school in Guatemala. Some days it doesn’t feel like much of a contribution, but I am doing what I can with what I have been given, and I know that for the kiddos in the school who are on the receiving end, even a little bit is better than nothing.

So here’s my shameless plug…I am sorry for it, but kind of not at the same time:)

Buy my stuff!
Support this school in Guatemala, and these precious kiddos, who so desperately need more than they will ever be afforded the opportunity to have, solely because of the system they happened to be born into.
Get your friends on board.
Support not only this school for kiddos with disabilities, but also raise awareness of Down syndrome with the “321” shirts.
“Like” my Facebook page (“321 Joy”) for more updates, new listings, and better communication!

*These are just a few pics of some items I am selling right now*

It sure is true that a lot can happen in a year:)

 

[31 for 21] ~ The Parentals…

In keeping with the theme of Fridays, I am so excited this morning to have another guest blogger who is willing to share her heart with you, and present a different and fresh perspective!

Merissa and I have been friends for ages, truly too long to remember!! (dont you just love friends like that? The ones where you can remember the beginning of the friendship if you try really hard and count back dates, but really it just seems like they’ve always been a part of your life and that’s the way you like it!) Like my friend Julie from last week, Merissa has walked with me (and I with her) through many of the ups and downs of life. I am so blessed by her presence and influence in my life, and in my family’s life. Thank you Mer for agreeing to do this for me…you rock!!

The Parentals

We don’t get to pick our parents. When we come into this world, we come in completely vulnerable. We can’t feed ourselves. We can’t clean ourselves. And we certainly can’t do anything to ensure our own survival.
We enter the world bloody and screaming, healthy or unhealthy… and two human beings (or sometimes just one) are responsible for our entire wellbeing. We get no say in the matter.

But I truly believe that there is a God who does.

I remember getting the phone call from Karyn the evening after Jake was born. We had walked through 8 years of friendship at that point and as she had become one of my best friends (she still is!), I couldn’t wait to hear how her first labour went. I was so excited to hear her voice.

Her voice was quiet: “Merissa, Jake has Down syndrome”.

For the next while on the phone, we cried together. We were silent together.

A week or so later, the women in the Slaters’ life came together and held a beautiful baby shower for Jake. I watched as a couple dozen women spoke into Karyn’s life. The predominant message was this: God did not make a mistake in blessing this tiny little boy with Karyn and Curtis as his parents. They are a special couple, chosen by God to guard, protect, nurture and grow this beautiful little son of theirs.

I got to hold Jake for the first time 6 weeks after his birth, when he finally came home from the NICU. As I held that little guy in my arms – his little head no bigger than a small orange, and his little hand barely wrapped around my finger – I couldn’t help but weep.

I cried not because I was sad, but because I knew I was holding a promise in my arms. A promise from God that He had provided Jake with everything he needs in this world. I also felt so blessed to meet Jake.

Karyn and Curtis love their kids – not just the feeling, but in the way that they live. In the four years since, I have seen Karyn, a lover of justice, advocate on behalf of her son in his vulnerability. I have seen her grow greatly as a mother. She possesses a love that is fierce and encompassing. And it shows.

Karyn and Curtis have taught Jake how to communicate his feelings and needs. Curtis works extremely hard to provide for Jake and the rest of the Slater family. He is so loved and respected by his little boys. When I am at the Slater’s when Curtis comes home from work, every time – without fail – all three boys will run full-speed to hug their dad as he walks through the door, yelling “DADDY!” It brings a smile to my face every time.

Together Curtis and Karyn have also sought out resources for Jake’s growth and development that I never even knew existed! They have spent countless sleepless nights making sure Jake feels safe while he is in the hospital with breathing troubles, or at home when he is pulling off that uncomfortable c-pap mask (or eating it).

I can only thank God for how He has gifted Jake with Curtis and Karyn as parents. He has scored big-time!

And I have scored big-time too. God has given me the chance to be part of the journey with them.

 

[31 for 21] ~ Today, I Wept…

I have always appreciated how where we live in Canada there are four distinct seasons.
About half the time, I am all on board for the changing of the seasons. Okay, let’s be honest here, I am fully committed when we are changing from Winter to Spring, and from Spring to Summer. The other half of the time however (obviously I am talking about from Summer to Fall, and even worse, Fall to Winter) I dread. I drag my heels, I complain, I pout that the warm weather is leaving and the advent of what seems like the eternal winter is upon us once more. Throughout the entire winter, I find that I constantly need to remind myself that it is just a season. That this too, shall pass.

This morning Jake and I were in his weekly Speech session at PREP, the preschool he attends twice a week for children with Down syndrome. We had just finished what I thought was a really fantastic speech session. He was engaged and involved during activities that are typically non-preferred for him, and he pushed through an activity that he was not interested in at all, and completed it. I was so proud of him and the progress that he is making with his new Speech Therapist.

We left her office, and were standing at the door to go downstairs to his preschool room. Before opening the door, however, I stopped to chat with a friend, who was there for a different class with her little guy. In the middle of my conversation with her, there was a commotion. I stopped talking and looked over, just in time to see Jake pushing another little one down to the ground, and standing over him pulling on his hair. I immediately stopped him, scolded him, and made him apologize to the poor little boy. Compliantly, he did apologize, I apologized profusely to the mother, and, full of shame and embarrassment, I quickly excused myself and took Jake down to school.

I came back upstairs after dropping him off, got into my car, and wept. I bawled like a baby for a good half an hour. Huge, heaving, ugly sobs of frustration and disappointment and embarrassment and inadequacy.

I wept because this was not an isolated incident. There was that time at the park last week, where he went up to a random kid and pushed him over for no reason. There was that time a few days ago that he bit his cousin on the cheek, completely unprovoked. There was that time today, after preschool, where his gymnastics instructor told me very gently, that he has developed a new behavior in the class of attempting to bite people who get in his way. There was that time yesterday at his typical preschool where his aide stopped him as he was reaching out to pinch a peer. And the list goes on…

I wept because I don’t understand. There have been no changes in our schedule or routine, there have been no major life transitions that have occurred lately, there has been nothing to suggest that he should be acting out in this way. I do not understand why the sudden change in my once easy-going child.

I wept because I want more for Jake. I want him to have friends, not drive his peers away with his erratic behavior. I want to be able to trust him around other kids. I want to continue to provide him with more opportunities for independence and growth, not feel as though I have to monitor his actions more closely. I want him to be a healthy, well-rounded child, capable of understanding and controlling his impulses.

I wept because I feel like a failure. Like I am somehow not providing him with the tools and resources he needs to be able to function in appropriate ways. Like I am failing Jake in the moments he needs me the most.

I don’t understand this new phase. I don’t know where it came from, why it exists, or how to navigate through it.
I know it is just a season. I know that this, too, shall pass.

But today, I wept.

Look at this cuteness! Why does it seem like this stage is like Dr. Jekyll and Mr. Hyde? One second, cute! The other second, pushing people over and biting. Grrr…

 

[31 for 21] ~ Wordless Wednesday…

First day of swimming lessons for this guy:) Nervous but excited!

#whatjakewears

#howjakesleeps

Me and the babe.

And this. Not wordless. Actually learning how to use words and read words! (a VERY SLOW work, despite the apparent success of the video…I just caught him on a good day!)

 

[31 for 21] ~ Making Waves…

Last week I wrote about how I was looking for a couple of organizations that could provide gymnastics classes and swimming lessons for Jake (click here to read that post if you missed it!). The footnote in the post was that we had decided to sign Jake up for an inclusive gymnastics environment. We chose not to do so for swimming, however.

I had just come to grips with the fact that Jake wasn’t going to be in swimming this fall (something I was actually really disappointed about, since I think he could possibly have a future in swimming in the Special Olympics, as I swear he is part fish!) when I heard about this relatively new program in Calgary called “Making Waves”.

The mandate of Making Waves is simple: they are a not-for-profit organization that provides low-cost 1:1 water safety and swimming instruction for children with disabilities. All of their teachers have experience in aquatics and with children with special needs. I signed Jake up on the spot (no, literally…registration opened at 10am on a Sunday morning, and I was on my iPhone registering him at 10:01!!) and got him in.

Let me just tell you something. Making Waves is FANTASTIC!!

Jake’s teacher’s name is Cassie.
Jake has had two classes with her so far. Just two.
The first class she basically held him, let him jump to her in the water, and got to know him a little bit.
The second class she tied a pool noodle around his waist, and let him go!! And he swam. He swam to her. He swam to the edge of the pool. He climbed out, waited for her signal, and jumped back in. And swam to her again. And again. And again.

It was incredible. I literally watched with tears in my eyes, as my baby boy, who is part fish, was given the opportunity to learn how to swim. Cassie is incredible. She watches the things he’s interested in, and then incorporates them into his lesson (like throwing an object into the water, and then jumping in and swimming to get it. Or like splashing just for fun, to blow off some steam). She laughs with him. She challenges him. And he notices how he treats her. He has only had two lessons, and her name is talked about on a regular basis in our house. Every time we mention swimming, Jake pipes up “assie, assie” (his word for Cassie!).

Check out Making Waves Calgary on facebook.
They are an amazing organization, and Jake has been so blessed (even two lessons in I can already tell!) to be a part of it! Thanks Cassie and the rest of the Making Waves team for making a difference for my guy.

**I am not allowed to take pics during his lessons, just for privacy reasons, so I don’t have any pictures of him in action (yet!), but here are a couple from the summer when we went to the waterslides in Salmon Arm on our camping trip.**

Cole and Jake were both so proud of themselves for being able to do the waterslides themselves:)

Just swimming! No fear whatsoever of the water:)

Noah wasn’t loving the waterslides…he just zonked out in Daddy’s arms!

 

[31 for 21] ~ The Blurred Line of Boundaries…

So, it turns out that when you have a migraine for four days straight and are lying in your bed, depending on other people to help watch your children, popping Tylenol like it’s going out of style, and wishing with all your might that there were something you could do to get rid of the pain, you don’t feel much like blogging. Today the migraine has been downgraded to a headache, and a headache is something I can live with! So, I’m back:)

I’ve been thinking a lot about boundaries lately, specifically how to teach Jake about proper physical boundaries. I struggle in this area for several reasons. At the preschool that Jake attends twice a week (the one that provides specialized services for children with Down syndrome), they are beginning to work on physical boundaries. The teachers who work with Jake will give a high five, but they are starting to shy away from hugging, in order to be an example for the kiddos to learn that there are people we hug, and people that we don’t hug. They also teach all of their aides (the aide is hired by this organization, but goes to Jake’s typical preschool the other three days a week with him…) to do the same.

In theory, I totally, 100%, completely agree with the philosophy behind this. I have a deep desire to teach all my children, but especially Jake, who belongs to a vulnerable population, what proper boundaries look like. I absolutely want to jump on board the boundary train.

On the other hand…
At Jake’s typical preschool, which he attends three times a week with his aide, they end each class in a different room. The teacher stands by the door to the room where the parents are waiting, and calls each student to come out by name, as they see the parent waiting for them. And without fail, each student comes running out the door, stops, hugs their teacher, comes to the next door, stops, and hugs the second teacher, and then runs to find their parent.

What?!
How on earth am I supposed to expect that Jake won’t hug his teachers goodbye, or his aide (whom he absolutely adores), when that expectation is not put in place for the rest of the class? And to be honest, it hurts my heart a little when he tries to hug his aide, and she struggles with it. Because she wants to give him a hug too, but feels torn, and I feel for both of them in that situation. How am I supposed to be okay with not showing physical affection (in the form of an innocuous hug) to people who are safe people in Jake’s life? I am already working hard at teaching boundaries with people who are not a part of Jake’s regular life, but I actually feel as though physical touch, in appropriate ways, is super important at this age from people who are safe. People like teachers, and aides, who work with my kiddo day in and day out.

And so I end the same way I began.
The lines are all blurred…

Super excited for preschool!!

Such a handsome dude!

This is Jake in his typical preschool class, being the helper of the day! He LOVED it!!

 

[31 for 21] ~ Through Your Eyes…

I am so excited this morning to introduce you all to another guest blogger! I love it that I get to share other people’s perspectives, and take a step back so that I can let other voices speak louder than my own:)

Today my very dear friend Julie is sharing her heart with us.
Julie and I have been friends for ages (I really and truly can’t even remember how long!!). We have walked with each other through many of life’s greatest joys and deepest valleys. She has journeyed with me through singleness, through marriage, and through the birth of each one of my precious babes, and she has always had the perspective I need in the times I need it most. I cherish her friendship dearly, and am so pleased that she agreed to share her heart today.

So, without further adieu, enjoy!!

Through Your Eyes

I love my friend’s kids.  When you get to journey with someone from single to married to having babies – the love for those little minions runs deep.

One thing I have realized lately is that I get to see Jake through his mother’s eyes.  I get the privilege of seeing her in the trenches slugging it out and I get to walk with her through the turmoil and frustration. But I also get to see her love her kid. I love Jake because she loves him. I see his potential because SHE sees it and talks about it and helps to make it happen.  And she invites me in on the journey.

I see Jake as an incredible person.  Every milestone is a celebration.  Every moment spent with him is a gift.

As a friend, I see my role to be a listener, a learner, and one who reminds.  I listen to the frustrations, the fears, the hopes, the dreams, the victories, and the setbacks.  As I listen, I learn, gathering information that helps me know how to be more intentional with Jake.  And I store pillar moments of Jake’s life in my mind so that when my dear friend is at the end of her rope, I can remind her how far Jake has come, and how there is no doubt in my mind that she is doing exactly what she needs to as Jake’s mom.

Karyn, I see Jake through YOUR eyes.  You, the one who fights for him, who loves him, who enjoys life with him, who invites others in on the most rewarding journey of seeing this little guy thrive.  I want that for Jake too because of you.

So thank you.  Thank you for inviting me in to be a part of something truly great.

My favorite things about Jake.

When he says THANK YOU!, he really means it. He declares it.  And emphasizes the YOU.  He kind of sounds like Mr. T.

He always has a smile when he says my name – OOEE (Julie!).  He also declares it that like Mr T.  My heart melts every time.

From a baby he’s been a goof.  A great sense of humor.  Funny faces, showing off by doing the craziest moves around the living room.

He loves to learn.  He loves to discover.  And he’s incredibly determined to do things himself.  This independent spirit has given Karyn enough material to write a book.

To Jake!

 

[31 for 21] ~ Throw Back Thursday…

Since it is “Throwback Thursday”, and since I have a giant migraine and have literally been sleeping and/or lying in my bed in pain for the entire day so far, I decided to do a throwback, both in blog and in pictures. The blog was one that I wrote during the “31 for 21” challenge in October 2013, so a couple of years ago already, but I think it still rings very true and conveys the same parts of my heart that I would like to see conveyed, so here you go again!! The pics are throwbacks from a camping trip we did with my sister and her family this summer:)

Before I had Jake, I had no connection to the world of disabilities.  Had I met someone on the street, in the store, or at church, I would have had no idea how to interact with them.  It is not that I was ever trying to be hurtful, I was just naive because the disability world had never been a part of my experience.

I am aware that many of you who read my blog may find yourselves in the same position.  I am aware that Jake may be the first person you have met with a disability.  And I am also aware that sometimes you may find yourself wondering what to say, what not to say, or how to act.  For those of you who have ever felt this way in the least (and please note there is no judgment here for having those feelings!), I give you this:

3 THINGS I WISH YOU WOULD DO:

Ask questions
Asking questions is a fantastic way to start a dialogue.  I love talking about Jake, about Down syndrome, or about the journey that we are on.  Many times, however, I will not volunteer the information if I’m not specifically asked, simply because I don’t want to be the overbearing mother who won’t stop yammering on about her child and about Down syndrome!  Asking questions is a great way to learn more, to get me to open up (although once the floodgates are open, you may regret that you asked!), and to ultimately better understand and appreciate my son and others who share an extra chromosome.

Listen
Listening goes hand-in-hand with asking questions, but sometimes it can go beyond that.  There are times in everyone’s life when we just need a listening ear.  This is definitely true in my own life, and as I struggle through some of the complexities of Down syndrome and parenting, there are times when I could just use a listening ear.  A non-judgmental, safe person; someone who does not need to solve everything for me, but is content to just let me vent and work it out.

Get to know Jake
I know that I am obviously biased, but Jake is an amazing little boy!  He has a very distinct, loveable, mischievous personality.  Interact with him.  Play with him.  Communicate with him.  Treat him with the same love and respect with which you would treat any other kiddo.  Do not let him get away with things you wouldn’t let your 4 year old get away with!  You will be surprised at what you will learn.

 

[31 for 21] ~ Wordless Wednesday (my four tiny miracles)…

 

[31 for 21] ~ The Nuances Matter…

At the end of the summer as I began to look forward to the fall and what it would bring for our family, I started to look into some programs for my older kiddos. I really wanted both Jake and Cole to be in swimming lessons, as well as gymnastics. And so I began calling around, trying to get information from different organizations about what it would take for me to be able to sign Jake up for their programs. This was our first foray into the world of true inclusion, and since I am a newbie in this arena, I wanted to make sure I was doing it right.

I called an organization in the city that, ironically, is mandated with providing services to adults with disabilities. They run a social enterprise in order to help them achieve their financial goals. This social enterprise is a recreation program at their facility, which includes a pool and offers swimming lessons. When I spoke with them on the phone, I explained our situation. I told them that my oldest son has Down syndrome. I expressed my desire for him to be enrolled in their swimming class, and asked if that would be possible. I inquired as to what it would take to make that happen.

The response I got was very interesting to me, considering they are an organization working in the disability sector. They were very nonchalant and noncommittal about the whole thing. They had no real answers, opinions, or advice for me. They told me that they could probably take him in one of their classes, but that I may need to provide additional support. To be honest, if I were to sum up my interaction with them in one word, it would be this: tolerated. The vibe they put out during our conversation was that Jake would be tolerated in their program, but that it would be up to me to make sure he could function.

My next phone call was to the gymnastics center closest to our house. They run a program for 3-4 year olds that I thought would be perfect, since I could put Jake and Cole in a class together. Again, I explained my somewhat unique situation, and asked what my options were.

The response I got was phenomenal. They put me on hold for a couple of minutes, and went and found the director for the preschool program. He got on the phone, and as I explained my situation to him, he was overwhelmingly positive about the possibilities. He told me that the center absolutely, unequivocally, without question wanted Jake to be a part of the class. He explained to me that they work very hard to create an inclusive environment that is conducive to all children. He suggested that I sign up both of my children right away, and told me that I should absolutely not send an aide with Jake, or stay in the class with him myself. He made it known to me that he is training all of their instructors to be able to help all children function well in their classes. If that means extra help, extra support, or an extra hand, then so be it! I left the conversation with tears of joy in my eyes. I would sum up my interaction with them in one word: embraced. The vibe I got from them was that Jake would be embraced in their program, and they would do everything possible to make sure he could function.

Guess which one we chose?!

Waiting “patiently” for gymnastics to start!!

Tolerated.
Embraced.

There is a world of difference between these two words.
Neither organization flat out denied my child access to their program. Both of them stated that they would, in fact, enroll Jake.
But while the outcome was the same, the tone behind it was completely different.

I am so incredibly thankful for organizations that choose to embrace my child.
He deserves nothing less:)

Addendum: We ended up signing both our kiddos up for the gymnastics program, but ultimately looked elsewhere for swimming lessons for Jake. Because at the end of the day, the nuances matter…