CDSW Day 1 - Meet Adam

Who better to begin the celebration for Canadian Down Syndrome Week than this handsome fella - Adam!

Adam's mom has so kindly agreed to let me share her sweet boy here in this space today. Adam is 13. I am so honoured to have him and even happier to share Karen's words and thoughts with you all. I especially love her words,

"showing compassion for others, when compassion was never taught."

Such a beautiful skill to just innately have. I think we could all learn a thing or two from this young man. Thanks so much Karen, I am honoured to stand with you in our community and live our life just as we all do - helping, advocating, supporting and loving all our children no matter what they need or where they are trying to go.

Enjoy Day 1 of CDSW!!!! 

How was your pregnancy?

My pregnancy was slightly more eventful, but Adam was my first child so I didn’t have any other pregnancies to compare to at the time.  I did have some spot bleeding off and on, as well as a skipped heartbeat during one of my checkups so I received extra ultrasounds and a stress test.  

When did you receive your diagnosis?

We received the diagnosis one week before Adam’s due date;  one of the ultrasounds showed shorter limbs, so we opted for amniocentesis. With the stress of the news, our OBGYN was very compassionate and scheduled an induction on the due date.

What were some of your initial feelings/thoughts/fears/hopes about having a child with Down Syndrome?

My initial feelings were fear, and grief. Who would play with our child? Will he/she have a normal life? Will we get our lives back when we’re retired? After a couple of days, I downloaded loads of information from the internet and contacted Up About Downs (a local support group).  The more I spoke to people and learned in only a few days, the fear slowly subsided and we began to accept our new journey. I remember my husband and I having our last dinner as a ‘kidless couple’ the night before the induction and just laughing at the silliest jokes, and I knew we were going to be okay.

What has your child with Down Syndrome taught you?

Our child with Down Syndrome has taught us that it’s the simple things in life that matter; giving hugs for no reason, helping out your siblings without expecting praise or a monetary gift, showing compassion for others when compassion wasn’t even taught. He has taught us all what pure love is, and how relationships and hard work give us the most return on our investment.

What is the most wonderful thing about knowing your child with Down Syndrome?

The most wonderful thing about knowing Adam is that he is not what I expected when I was told our baby had Down Syndrome. I now truly believe that having a child with Down syndrome is the best gift we’ve ever received.

How has Down Syndrome changed you (if at all)?

I don’t think having a child with Down Syndrome has changed me so much as it has offered me different experiences to learn more about myself.

What do you wish the world knew about people with Down Syndrome?

I wish the world would realize that people with Down Syndrome work just as hard, if not harder than most and deserve to be equals amongst their peers, coworkers, siblings etc.   As parents and educators, we’ve taught these children many skills in life, but nothing compared to what they have taught us.  

I hope one day that all doctors are educated in all aspects of Down Syndrome to deliver a positive message with their diagnosis to new parents.  

What are some of your hopes/dreams for your child with Down Syndrome?

Some of our hopes are that Adam will continue to be happy, fulfilled, and to live the life he chooses.

PAUSE because I have to tell you that I just love this next part so SOOOOO soooooooooo much...

My dream on the other hand may not be Adam’s choice lol;  my dream is that when Adam is finished his schooling he will run his own small seasonal business, and travel with his mom and dad throughout the winter.  I would also love to have a separate suite in our home for Adam (and spouse :-)) so he can be independent, but still be close to us.  

I love this so much Karen!!! Thanks for being a part of our message here on Chasing Hazel and proving that once we understand and accept the way things ARE it's impossible not to LOVE better than we thought possible. 

This pic below is of Adam learning to perform CPR - providing further proof that he is capable and worthy. 

Lots of love to you Adam!!!! xo

 

Canadian Down Syndrome Week 2016

Guys!!! Belamour and I are having an amazing giveaway on our Instagram and Facebook pages. Be sure to head over and enter to win a Hazel Love Blanket. The blanket that was created to give LOVE on the purest level. Blanket shown below.

I just took a scroll through my posts over the last little while. What I noticed was that what started out as a space that talked A LOT about Down syndrome, has become more of a place where we are just sharing our life. As the years pass Down syndrome has become something that seems to be hidden in the shade, under a big cozy tree, reading a good book. It's kinda there if we need to refer to it but mostly it's just a quiet part of what makes us whole. 

Since Canadian Down Syndrome Week is coming up I figured I would shift this space just a little bit more toward the little extra chromosome.

I feel like one of the BIGGEST most TREASURED gifts that Down syndrome has given us is connecting with families all around the globe and in our local community who are all embracing change and difference just like us.

Some families have been on this path a lot longer than us and for them I express gratitude for paving the way and setting such a great example for us to follow. You all have fought, accepted and loved on a level that I admire so deeply. It inspires me to be a better mother. A better person.

Some of you walk side by side with us. Our children are at the same stage, taking the same steps, at the same time. I am honoured to be holding your hands as we walk along together. I don't know where I would be without the knowledge that there are other families out there experiencing it all as well - good and bad. 

Some of you are just starting out and for you I am so EXCITED!!! Life is not always easy when you have a child, especially a child with special needs, but it is rewarding. I hope to share my friends with you so that you know, even in your darkest moments; you are never truly alone. There's always light at the end of the tunnel, even if only a tiny glimmer. Any family that I know that has a child with Down syndrome, is always ready and wiling to connect with and support anyone who may feel a little scared of the dark.

For CANADIAN DOWN SYNDROME WEEK I am super SUPER

excited to be sharing some of our local kids and families

I share about our family here all the time. I couldn't think of a better way to bring us all together as a community than to share some of our our very own local families that have been given the wonderful gift that is Down syndrome. I know you will show them some serious LOVE this week as only you here at Chasing Hazel know how.  

LET'S CELEBRATE TOGETHER HERE ON CHASING HAZEL!!!!! GIVE IT UP FOR OUR GUESTS THIS WEEK.

THEY ARE AMAZING!!! 

The Princess Halloween of 2016

This year the kids didn't really choose their costumes but I knew what I had to do. I mean Nola is a princess gal - nothing I can do about it. She LOVES EM. For her, the decision was easy - Sleeping Beauty. Hazel doesn't love to dress up BUT she is in this phase where if another kid is doing it YOU BETTER LET HER DO THE EXACT SAME THING. She forced my hand and Hazel as Princess Elsa was born. 

I really wanted to do something super cute like we had in the past but they are who they are and who am I to get in the way of that. 

So it's somewhat warmer this year than it has been in the past and it's NOT RAINING, which is a HUGE deal!!! 

We continued our tradition of Trick-or-Treating with the girls cousins. They all had so much fun!!! Nola was like a boss going up to everyone's door, knocking and yelling, "Trick-or-Treating!!!!!!!" She did't really stick around to chat at first but as the night went on she would tend to stick around a little for some small talk. Especially if she was scared of someone's decorations. She would take the candy and then tell them that, "I don't like that. It's TOO scary!!" There were houses she just refused to go to period. Others I had to carry her to the door cause she wanted the candy but she was too scared.

Overall, I think she learned a very important lesson. Always go where the candy is even though it looks really scary. FAIL!!!! At one point a strange man even offered to take her to the front to get candy and she obliged cause he had a baby too. YIKES!!! Back to the drawing board with this one.

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Hazel lasted a whole of 2 houses last year before Matt had to go sit in the car with her so this year was a huge improvement (if we consider going trick-or-treating to more house as improvement?) Anyway, she had a lot of fun, so that's something. She went to the first house, got a bag of chips and sat in the wagon until they were done. Next house, new bag of chips. Repeat. She did eventually get out and totally LOVED going up everyone's steps, holding her bag open and getting whatever treats people were kind enough to give. She wasn't scared of the decor and even stopped to play with this rather freaky looking thing, stick her finger in it's mouth and laugh a little when it chomped down on her hand (not hard of course). Too funny!!!

It was a ton of fun and lots of laughs. Nola didn't wake up with nightmares so that a win. I was sure she was going to sleep with us last night. You never know how this fear and scarring is going to manifest itself. I am sure that her therapist will hear all about it in the future. "Your welcome future therapist, I'm sure you are enjoying the European vacation on account of Nola's repeat service."

If nothing is obvious by now, it's that I am pretty obsessed with these 5 gals. Another successful, safe year ladies. Much love and gratitude for that.

Happy Halloween 2016!!!!

Hazel Love Blanket

I am VERY PROUD to be introducing the new Hazel Love Blanket!!!! 

Isn't it the best blanket YOU'VE EVER SEEN???!!!!!!

My  sister in law, Paula - designer of the gorgeous Belamour Collection, approached me with this idea. Her vision was to create a tangible item that equally expressed the love she felt for Hazel as well as exude the love that Hazel gives to others. Since the day Hazel was born with Down syndrome, she has blessed us with her little extra sparkle and peaceful heart. Her Auntie Paula thought it was too precious a gift to keep all to ourselves.

The creation of the Hazel Love blanket is her way of sharing Hazel's sweet gift of wholesome, unbiased LOVE with all of us.  

Paula was also inspired to create this blanket as a symbol of universal and unconditional love. A tangible object to represent the feeling of community and togetherness. Her hope is that this blanket not only provide comfort to those who are wrapped up all cozy in it, but that it serve as a message to others that people with Down syndrome are a blessing to us all. 

In honouring her goal of supporting our friends with the extra chromosome, she has decided to donate $20 from each blanket sale to an organization that is devoted to increasing the quality of life for individuals with Down syndrome. 

When she told me about this idea she had, I fell in love with it! Right down to the little Xs on each blanket. They can represent so much: Love, The Xtra Chromosome, Little Girls, Kisses....and on and on. I'm obsessed!

A perfect way to share Hazel's sweet soul with so many people. I hope that if you do find yourself needing a little extra LOVE you will head over to the Belamour Collection website and read more about the Hazel Love blanket.

Hazel's "All About Me" JK Book

I made a book for Hazel to bring to school with her. An "All About Me" book. I tried to capture some of her distinct qualities, likes/dislikes and things that best describe who she is. I am really pleased with the way it turned out. She loves to read it and look at the pictures. Total WIN!!!!

After I posted a few pics on IG and FB, many of you asked me for a copy. I thought I would throw it up on the blog as well. Hope this helps you and your babes transition to school successfully. 

 

As I was writing the book, I kept on thinking about more and more ways that it just made sense for us. Here's what I came up with:

Share Info With Teachers:

The original intent was for it to tell her teachers and EAs a little more about her without having to send a checklist to school with her. Nobody should have to do that. I thought this was a nice, cute little alternative to trying to fit all the necessary info into one conversation on her first day of school. 

Comfort for Hazel:

I thought it might be nice for Hazel to have as a reminder of home. If she was feeling like she needed to see a familiar face she would have the book to refer to. 

A Conversation Piece:

I also thought she could read it with her friends so that they can get to know her a little more. Since she is not as verbal as the rest of the kids, the book with all the pics made perfect sense. It will highlight the words and phrases she does know and aid her in feeling more at ease to speak.

An Ice Breaker:

Realizing that at her age many children don't really notice differences among friends, I thought that if there were any kids in her class curious as to why Hazel doesn't speak clearly, or acts a little different then them, the teachers could read the book with them. It could be a way to open the lines of communication. I feel very strongly that talking OUT LOUD about disabilities is the only way they become understood and accepted. We know Hazel has Down syndrome, we are not ashamed. We want to talk about it.  

Here's HOW I made the book:

1. I created the book in Google Docs.

2. Inserted my own photos.

3. Printed it all on white card stock.

4. Laminated the pages together (back and front so it was shorter).

5. Got it bound. 

Here are some of the pages of the book so you can see what it looks like...

Here is the text that I used. I just copied and pasted it here so you get an idea of what I included in the book

You can also download the book right here to see.

 

Hazel Seguin

Junior Kindergarten

September, 2016

 

 

Hi!

My name is Hazel.

I am 4 years old.

 

l

 

I have a sister, Nola.

 






I have a dog, Nico.

 

 





This is my

mommy and daddy.

 




 

Here is my family.

 

 

 

Daddy is my favourite.

My favourite princess is Elsa.

I know all the words to the song, “Let It Go.”

 

 

I also like Tangled, Bee Movie, Hotel Transylvania and Shrek.

 

 

 

I like to colour.

I can make circles, an “H” and a smiley face.







 

My favourite foods are pizza and pasta. I also love

Goldfish crackers,

cupcakes and CHIPS. Yum!

 

 



 

How could I forget?

Apples too…

 

 



 

I wear braces on my legs to help me feel strong.

I can keep my balance better when they are on.

When I wear them, I can ride my tricycle and

run really fast. Just like my friends!!!

 

 

 

Mommy says I have

Down syndrome.

I think it could mean,

I might need a little extra time to do some things but

I WILL DO THEM.

 

 


 

She says I am more like other kids than different.

 

 




 

I like to go swimming.

 

 



 

Visits to the park are fun!!

 

 



 

I really LOVE to play with my shadow.

 

 



 

I play outside with my friends.

 

 





I like to hang on the bars.

 



 

I can read words on my flashcards.

 

 


I can talk but sometimes I feel a little bit shy. It could be hard for my friends to understand me. Please just give me a minute, I am trying my best.

 

 

I like to hum when I am working or really focused on something.

 

 


When I have to do something I don’t want to do, sometimes I yell and shout.

When I get really frustrated, I may even kick or hit. I’m not trying to be mean.

 

 

My mom says that all of these things are what make me,

ME.

 

 


The ways that I am different, make me beautiful.

Just like many of my friends have different hair,

different eye colour or different skin colour.

 

 

Although, I don’t FEEL any different from you, I know that I am. I want you to know that I am OK with that because I like being ME.

 

 

We are all different and being different is GOOD!!!

 

 

 

Summer's End 2016

Honestly, I can't even believe how far behind I am on this blog of mine. It's pretty unacceptable actually. Trust me when I say that I have been doing stuff, just not "bloggy" stuff.

Here are a few pics of the annual Labour Day weekend we spend every year with family. Always, closing out a great summer at the cottage with the people we love. Perfect weather, super laid back and lots of time for my kids to laugh and play with their cousins. I actually commented to Matt on the way home, "This is the first year I got to sit down for like a long time." Long enough to get really tired and not motivated to help out AT ALL. My family is lucky to have me #ididntdoONEthingtohelpwiththemeal 

Settling into fall at the moment. The weather and the trees have finally turned. I really have to say though, I enjoyed our extended summer this year. Next post up - APPLES!!

Tobermory 2016

I think there are a BILLION pics in this post - like I'm not exaggerating - AN ACTUAL BILLION!!! (insert monkey covering eyes emoji here)

We decided last minute to go on a family trip in August. By 'we' I mean me. The kids had both been sick in July and it basically triggered my fight or flight response. BIG TIME! Flight was the obvious answer on this one. I literally couldn't imagine the thought of facing another winter cooped up, cold and nursing two sick kids back to health for months on end. A change of scenery was a must. Living in Ontario the decision to head north was a no brainer. Tobermory was the destination. It being on the Georgian Bay was 100% of the draw. I was craving that aqua lake so badly that it was literally taking over my brain. It did not disappoint!!! 

You know those vacations or days that you plan to spend as a family?? You get all excited and feel super proud of being the best parent ever cause you're going to log all those special moments, make all the memories, laugh and be merry. Then you get there, to said magical place, and your kids are totally miserable. In turn making you totally miserable. The whole thing wreaks of failure and regrets. Ya feel me?

Well, this vacation was the exact opposite of that.

It was a total WIN for everyone. The kids LOVED it all. It literally was the perfect destination for our family. For 7 days from start to finish we were beach bums. Nuff said right?!! Everyday visiting a new beach, with new sights and different vibes than the day before. The water was crisp, clean and absolutely STUNNING to look at. 

Our first stop on the way was Kincardine. Such a fun little place to stretch our legs. Also, the first beach the girls has been to in a while so they LOVED it. Letting the waves roll in on their legs was like pure joy. They laughed, ran and got their clothes soaking wet cause there was no time for bathing suits. 

Then we got to the most perfect little "A" frame cottage a girl could dream of. Exactly what our family needed. Apparently this was the sunrise one of the mornings. Matt told me anyway. I was on vacation and on vacation you don't wake up in the sixes #liferulesbysteph

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The trip was packed with lazy mornings, with lots of coffee and PJs until we left to go on a beach adventure.

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Sunsets looking out over a bay in Lake Huron. So nice!!!

These pics are so blurry but you can still make out the smiles on the girls faces. Priceless!!

Our little pet CHICK-MONK for the week. He was so adorable and super friendly. He would climb right up on our hands to stuff his cheeks full of peanuts. Nola was obsessed. She wanted to hug and kiss and hold him. It was a lot. She would go outside with the peanuts and call him, "Here chick-a-monk, heeeeeeerrrrre" with the raspiest little voice I ever heard. Literally the cutest thing ever!!!! So much so, we still call the chick-a-monk to this day just so she repeats us and says it again and again. 

Nola counted the little airplanes every time we passed the tiny municipal airport. Pretty much everyday. One time, there were 3!!! She was pumped. That butterfly was actually on my hat, which was on my head, about 3 minutes before Matt snapped a pic of it. Pretty magical.

This here is Little Cove. One of my most favourite spots on this earth. It very difficult to just sit on the shoreline and not want to be IN the water. It's just something you want to be a part of, like somehow by entering it you will be cleansed. Baptized perhaps. YES - It's that beautiful.

This is the magical spot where Nola learned the word "benture" - adventure. We hiked a little ways down to this beauty of a spot and hung on with the kids for as long as we could. And then I came back all by myself so I could really take it all in.

Family selfie at Little Cove.

That feeling I felt right there...I can't. 

Little Dunks Bay Beach. SO SOOOOOOO pretty.

Lion's Head. The most perfect family destination ever. EVER! Stop what you are doing and go there...Seriously GO!

Hiking (walking on a very smooth gravel path) down to The Grotto - one of Ontario's top destinations. Such a cool spot to see. A little crowded but still worth a trip. Totally manageable with little kids too.

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We passed a little beach along the way.

This colour - AMAZING!

Little troopers walked all the way back to the car. Over a km I think. So fun!

Tobermory Marina. 

Hazel.....Ok then?! Nobody's ever taken your ice cream before. Nola.....Aren't you supposed to be happy when you eat your ice cream? Clearly we failed as parents somewhere along the line. I feel this may come back to bite me in a therapy session at some point in the future. Likely, Nola's. Sigh...

Sunset with the kids.

Seriously though, not as glamourous as it might seem. We totally had to bribe them with chocolate, cheesies, iPhones, and an iPad. But for a whole 30 seconds they were quiet. Oh and also, I got these pics. WIN. WIN. And #WIN

It will "go down in the books," or so they say. One of those times where you know your kids are logging the happy, healthy, comforting, adventurous memories that will shape who they are just a little bit as adults. 

 

HAITI NEEDS US RIGHT NOW

Please read this email below. It's from Jim who has been to Haiti several times and is trying to make contact with people there and at that orphanages he is involved with. 

 

IF YOU HAVE ANYTHING THAT WE CAN SEND THERE NOW IS THE TIME!!!! 

A shipping container is going out in 6 days. Please consider dropping off any of the thing listed in the email below.

Good Morning Everyone,

I have finally spoken to our driver Enock this morning.  He and his family are safe, but many others are not.  He told me that his 2 brothers and family living in a tent city outside of Pettionville have been washed away.  The tents could not withstand the 140 mile/hour winds and constant rain.  Enock says there are thousands of people missing, not sure if they were washed away or fled to a safer area.  Enock says it is mass chaos in Port au Prince and surrounding areas.  He has no power and he believes all power in the region is out.   He has not been able to get to any of our orphanages to check on our kids because the roads from the hill he lives on are washed out and no tap-taps (Haitian version of a very cramped taxi)  are running at this point.  I have also been in contact with Pastor William this morning ( the pastor that helped us with our meal event) but he has not been able to make contact either from Tampa.  He believes that many of the camps, especially in the south would have been washed away.  These tent cities were already run down with rotted canvas everywhere.  High winds and rain would have caused instant destruction and wide spread flooding.  Remember, Haiti doesn’t have a North American sewage system.

I will continue to push for answers from our 3 orphanages and I hope to learn more today. In the meantime, our GFX team is getting ready two 40 foot containers of food, hygiene products, clothes and medical supplies.  We are trying to get everything loaded within the next 6 days to get them on the water.  I will fly into Haiti as soon as its safe to travel there to check on our kids and dear friends.  I would think it is a very dangerous place to be today as people will be desperate for food and possibly medical supplies. Desperation causes people to do crazy things.  I haven’t yet spoken to my bodyguard Valcourt, but I’m sure he would not allow me to travel to Haiti at this point.

Please continue to pray for the beautiful people of Haiti.  If you are in Windsor and have some clean clothes, hygiene products, rice or pasta, we would greatly appreciate it if you stopped by our GFX offices in the next few days with anything you think would be helpful for these poor, poor people.  We will load them onto one of the 2 containers and ship everything in the next week.  I pray this is not as serious a situation as it sounds like, but communication is so poor there, so its impossible to really comprehend what is happening.  The people of Haiti just cannot catch a break.  

Thank you so much!

Jim

Please email me, Facebook message me a chasing Hazel, call me, text me - ANYTHING! If you have anything you can manage to get together quickly for he people of Haiti

 

Behind These Eyes

I was scrolling through some pics for an upcoming presentation that I am doing and I came across this old pic of Hazel. It stopped me in my tracks and got me to thinking...again, just like it did the very first time I saw it.

You know those images that are just so powerful they pull you in? They provoke emotion? They make you really SEE? You question everything. It's like you thought you knew but you realize that you actually had no idea. Yes - these moments actually do exist. This pic right here was that moment for me so many months (years) ago when I first saw it. And even today when I look at it. Stops me dead. Every. Time.

The very first time I saw it on my camera, I was taken in. I realized that I had never really truly understood the beauty that was Hazel. Until the moment my eyes landed on hers in this pic. Even more than that, I don't think I fully respected the beauty that was Down syndrome. One glance at those eyes in this pic and I was frozen. I couldn't look away. I was completely drawn in. In that moment, something became so clear...I knew I had NOTHING TO FEAR. The purity before me seemed like such a gift more than it ever had before. I felt reassured, like she had this all under control.

These eyes are among the most BEAUTIFUL sights that I had ever seen. How on earth could anyone see these eyes and deny the beauty that they hold? How could a person see them and say that these eyes aren't capable? These eyes hold a clear vision of possibility. They tell the world, "I CAN."

When I look at the picture again today it makes me want to go back to my 34 week, pregnant self. THIS is the picture that I would show me. Along with these words...

This seems bad. I know. Like 'really-scary-crawl-in-bed-and-ugly-cry-for-days' bad. I get it. Feel it. Panic. It's OK! Now listen. 
Trust me when I tell you that this is going to be ok. You are going to get through it. You just don't know anything about these very intimidating words, "Down syndrome." I want you to look at these eyes. I mean really look. These eyes will teach you all you need to know. They are the most pure, wholesome and beautiful set of eyes that will ever exist. When you look at them you will feel ease and trust that something grand is about to begin. You will see Down syndrome and you will not be scared, you will be proud. You will see an exotic type of beauty that you could only dream of being a part of. These eyes are something you made. They are calling you, waking you and sparking something in you that you never knew was there. You will want to share this picture with the world and brag about your gorgeous, perfect daughter just like you thought you would. These eyes will look at you, take you in and love you. Down syndrome will become something that only exists behind these eyes. Everything else about your baby will come first.
You will feel PEACE, I promise.
You will feel LOVE, I guarantee.
You will QUESTION the future, I understand. 
You will be beside yourself at the beauty that is Down syndrome, I can't wait!!!

This is what I have to say to my past self today, which may not be the same as what I would have said yesterday, a month ago, a year. It might not even be what I would say tomorrow or a year from now? I think that's part of what really intrigues me about the evolution of the Down syndrome journey. It's always moving, changing, growing and mostly, pulling you in. 

 

 

 

School Days - The First Of Many

Her first day of school is almost in the books! Just shy of one hour left in her day. I can barely stand it. Like actually - I CAN'T!!! Strangely I am not worried about her, I MISS her. I'm excited to see her and hear all about her day. Did she make friends? Did she like the songs? 

We walked into the classroom this morning and she did not hesitate. Walked right through those doors and into the room like a boss. Greeting everyone with a smile, a wave and even a hug. She was interested in all the toys around the room and wasted no time in venturing over to see what was there. First objects she picked up were 2 school busses, one in each hand. While Daddy and I spoke to the teachers and the EA, she was making herself at home adventuring around the room, testing out and sitting in the wee chairs. 

I know there will be a learning curve to this whole thing. She did not like being turned around from the coat room. Girlfriend likes to be freeeeeee. She likes to wander. In the classroom there are boundaries. Open boundaries with no doors. Invisible lines that she needs to learn are actually there even though she can't see them. Lines she can't cross. 

As we sat and observed circle time. Hazel was having hard time sitting and staying put without the redirection of her lovely EA. She wasn't picking up on the cues from the other kids to sit criss cross and focus on the teacher cause she's probably going to say something pretty amazing. Maybe she would even sing a song or two. I love her teachers. Love them! That was when my eyes got foggy with tears. Looking at her in the group, as they were singing "The More We Get Together." I'm a sucker for a good song.

As we were watching, Matt looked at me and said, "She needs this!" And at that moment, I was ALL IN. She does need this! She needs to learn to do what she's told, to follow social cues, to share, to play, to contribute. This is where it all begins. I note all of these things here because I can already feel my heart swelling with pride when I post about her classroom skills at the end of the year. Or the beginning of next year. The growth will be so obvious, so worth it. One thing I can always count on with Hazel is that she does and will continue to make me proud. 

She needs this. 

When we left, Hazel thought she was coming with us. When she learned she wasn't she was upset. We left anyway. She cried for about 10 minutes (I did not because I had decided about 10 minutes prior that this was the best thing for her - ONWARD), was snuggled by her EA and nothing but positive reports have been coming to me since then. The communication has been stellar today and has helped me to stay sane. So far, what a great experience sending my baby off to the big scary, beautiful world.

We went to pick her up, lined up in the queue with the rest of the parents and watched our girl as she played with all the other kids. She was smack dab in the middle of about 7 kids all on the monkey bars. She was interested in them, they were interested in her. She was watching them, doing what they were doing. Her EA was there, helping all the kids, lifting them up. At that moment she was one of them. Some needing a little boost at times and some doing it on their own. Isn't that just how life is sometimes? We all need a little boost here and there at some point.

As we sat there like creeps, sneaking pics, not even blinking, we saw Hazel leave the bars and walk toward the fence. The other kids quickly noticed that she had gone and followed over to join her.

When we went in to pick her up, it was absolute magic. She locked in on us and smiled the biggest smile. She started running towards us. She didn't stop until she landed in the outstretched arms of her sister. Even though Daddy was there with his arms ready as well, Nola was the one she wanted, perhaps needed. Just to enhance the glorious moment even more her EA was there to exclaim, "Best first day EVER!!!" I really don't know if I can begin to describe the emotions I was feeling... Pride, relief, love, happiness, joy, confidence, HOPE. I'm not sure how I didn't actually explode right there in the school yard (holy buzz kill if I would have). 

Like I said, I know that there's going to be a learning curve. I know that there will be plenty of adjustments for us all. Nola and Hazel have no clue what a life without the other is even like, for them it doesn't exist. This is going to get a lot worse before it gets better. I am so glad that Hazel had a good, happy experience to start it all off. Now that she has a good association with school as a happy, fun place, she began to build a healthy, trusting relationship with her teachers and EAs, I am so much more sure that she will adjust and accept her new environment.

And at the very end of her very first day of Junior Kindergarten, she hugged the teachers and EA. She hugged her mommy, daddy and sister. And mostly she had a huge BRIGHT smile on her face, almost like she knew she accomplished something she should be VERY proud of.  

As for Nola, well she was in heaven with Mommy and Daddy all to herself. We made sure she was the centre of the universe. She wanted to wear her backpack and carry around her water bottle all day. We went for lunch, walked around the mall, our lovely friend at Mac let her have free reign over the eye shadow and bought the girls some presents, which Nola got to pick out. She was LOVING it!!! I am not sure who loved it more? All I know is that Matt and I were pretty thankful for her company that day.

One last thing...

I am beyond humbled by all of you who took the time to call, text, comment, or 'like' our posts on either FB or IG. I read them all and smiled so big. Y'all have carried us through some pretty anxious times. Without your love and support Hazel's world wouldn't be so bright. We can only do so much from our end, it's how she's received out in the world that tells the story of how far she will go. 

THANK YOU times infinity!!!!

The Day I Cried In The Tupperware Isle

Hazel is starting school tomorrow. Let's just say it. Get it out there. Call it like it is.

Ok! Now that that's done...

Yesterday I was picking up a few groceries. A few last minute odds and ends. Water bottle, thermos, Tupperware. While standing there obsessing about size options available, the colour, the brand. There's a mom, son and dad standing next to me. She's also obsessing about the size options. Don't want to mess that up. Naturally, we were getting in each other's way.

"Oops, sorry." We said to each other, with a chuckle.

Since she was standing so close I could hear her asking her son, "Do you need any tupperware?" He looked about 18 or so. The second time we bumped each other, I laughed and said to her son, "Now you must be heading off to college?" He said he was.

I turned to his mother, "Well my daughter is going into JK and look at us. Standing here doing the exact same thing, finding ourself in the exact same situation this many years apart."

Then the tears came. She looked at me and we chuckled again. She told me that as the kids grow they get better and BETTER. That I will see. That being a mom is so much fun. More tears. I tried to keep it together enough to tell her THANK YOU and to have a great day. When I walked away, with all the tears, I realized, THAT was exactly what I needed to hear. I walked away with hope that in 14 years my kids will still need me to mother, nurture and provide for them. To ask them questions like, "Do you need any Tupperware?" It was magic.

There's a new beginning around every corner, even if it's the tupperware isle. 

***************************************************************************************************************

So below this pic is the part of the post that I wrote when I was of sound mind and body. Not the day I said good bye to her preschool teachers, her therapists, her comfort zone - gahhhh! It's too much! I am an actual hot mess today. Not about her going to school, about her leaving a place that has done so much for her up until now. A place that believes in her every single day. A place she is loved, nurtured and WORTHY. So yeah, I'm a mess. I don't like CHANGE. Doing hard things sucks! 

Is Hazel ready for school? Hmmmmmmm...let me think....

Yes actually, I think she just might be.

Lots going on emotionally about sending a certain little love to school. I remember when Hazel was just a wee babe and someone would ask me about school and I would immediately disregard the question saying I had lots of time to think about that. I would worry about it when the time comes.

Well the time has come.

Time to worry, time to plan, time to talk to people, time to ask questions, time to assemble the team. Because it is a team when you have a child, particularly a child with special needs.

Back when we started entertaining the idea of school for Hazel the idea was met with stress, anxiety and fear. Let's just say I was resisting the urge to get into the fetal position 99.9% of the time (cause a couple times I was drinking wine while discussing it, in which case I was fine). By now we have talked the talk, walked the walk. We visited the classroom, met the teachers and support staff. We have shared, discussed, went away feeling a little more confident. Met again, discussed again and yet again, more confidence.

I think Hazel knew that mommy was feeling all the feels in terms of school and decided, in true Hazel fashion, she was going to grow and mature over the summer to an extent that I did not know was possible. She is voluntarily moving more out of her comfort zone. From being the observer, to the slightly more outgoing participator with the other kids. Her communication has come leaps and bounds, she's much happier to be out of the house and experiencing new things. She's more tolerant of busy situations and activities that are out of the ordinary. She has become a more confident little girl. What else can a mother ask for but confidence in her daughter? Especially right before she's about to take another step further from the nest.

Of all the times that I have ever imagined and looked ahead to Hazel going to school I never thought I would feel ready. Because at the end of the day it's not about them feeling ready, is it? It's about us. Our anxiety, our emotions about losing our babies, our fear that they won't fit in, or be liked, or do well. I mean, we all worry about that don't we? Kids - they adapt, they change, they adjust, they persevere.

So with all the confidence in the world, very little anxiety and a tiny bit of excitement, on September 9th 2016, Hazel will attend school. 

She will walk through the doors and join all the other children in a fully inclusive environment where she will be expected to grow and learn just as all the other children are expected to do. She will be welcomed, wanted and appreciated everyday for her achievements, just as all of the other children are. And I did not have to fight for that right. Inclusion was a battle fought by the parents of children with disabilities before my time. For that I could NEVER thank them enough.

In 2016, Hazel has OPPORTUNITY.

How could there ever be words to encompass that gratitude to every single person/parent/guardian out there that fought the good fight and now our children are given opportunity? 

************************************************************************************************************************************************

So it's me from today again, train-wreck me. You've been warned.

I know that tomorrow will be fine. It's not tomorrow, her first day, that will be the hardest day. It's Monday and Tuesday and everyday for the next little while until Hazel can understand that this is her new home, her new routine. She's not going to feel safe at first, she's going to be confused, scared and unsure of the new faces in her everyday life. Those are going to be the hard days.

Lift us up Chasing Hazel family.

Love us like you do, support us like you have and send us strength cause your strength carries us.   

Much love and thanks...

 

 

 

 

Teaching Kids With Special Needs: 5 Things I Want Teachers to Know

My baby is starting school. For a long time that sentence really stressed me out. To say, to hear, to type. When you have a child with a disability like Down syndrome, sometimes embarking on things like school can bring about more challenges than just the separation between you and your child. Although that is definitely A THING!!! So on top of the emotional aspect, there were other things that were important to consider when preparing for my little one to start school.

After countless meetings and conversations, I am now 100% confident sending Hazel to school because I am 100% confident in the team of teachers that have opened their hearts up to us so freely. They have accepted Hazel, acknowledged her potential, gone above and beyond to ensure our comfort and they genuinely care about the future education of my daughter. They treat her with respect, and consider her worthy. Not only am I not nervous about sending her to school, I'm excited!!! (I am going to miss her though - sooooooo much - so there's that).

Since I am feeling so confident I figured something must have happened to help foster that confidence. I thought I would share 5 things that a teacher can do to help ease the transition to school for the parents and the child with a disability.

1. Communicate

There's nothing more important in any relationship than communication. For the parent sending their child with a disability to school, we want to know that we can speak to the teachers and the educational assistant on a regular basis. It's important that everyone's expectations are clearly stated, plans laid out and progress reports given. Ask the parents what you can do to help them feel more confident in the process of transitioning to school. Follow their lead. Maybe this parent wants to educate the rest of the class about the disability, maybe they don't want to center out their child. Maybe they have specific goals they are working on. They may even want to be involved in the program and curriculum goals set out for their child. Maybe they just want everyone to know that their child is worthy and capable. Everyone is different and chooses to handle things the way they feel is best. Talking together and having regular communication will keep everyone on the same page. Consistency across the board means everyone wins!!!

2. Be The Model

Students watch every single move their teacher makes, even if they don't seem like it. Children are observers, they watch everything and they learn even the most untoward of behaviours. I'm sure we've all been embarrassed a time or two by the things our children choose to imitate. Yelling into the telephone, growling and shaking their heads, pointing a finger. We've all been there - TELL ME WE'VE ALL BEEN THERE??!! The teacher has a very important task of modeling how to accept and include a child with a disability. If the teacher is dismissive and impatient with a child that takes a little longer to explain their thoughts or react in a social interaction, then the students will be too. The teacher must show the rest of the class HOW to be patient by BEING patient themselves. It's helpful to model positive peer interactions, highlight all children's strengths and foster equal treatment of all students (and equal does not necessarily mean the same).

3. Set The Tone

Encourage an inclusive environment that accommodates all learning types. A child with a disability is capable of being a classroom leader just as anyone else would be. Promote an environment where all the children play together and all the activities are accessible to everyone. Discuss how everyone is different and that being different is just that, "different." It's not good or bad. Nothing is "wrong," just different. Different is what makes the world a beautiful place.

4. Previous Meetings

Take some time to meet the child and parents before the first day of school. Not just in the transition meetings but a more casual meeting in the classroom. Allow the child and parents an opportunity to get to know you, the teacher, a little bit before the school year starts. It's likely that the child will feel more confident and relaxed if the teacher and the parents have a good rapport. Also, if at all possible, visit the child at the preschool they attend. The child is likely very comfortable there and you will be able to see them in their own element. The preschool teachers will be a wonderful resource and have wealth of information about your child in a classroom setting.

5. Have Expectations

Children with disabilities are capable, worthy and able to accomplish goals on all skill levels. Be a facilitator and a tool that can help the child reach their full potential. Maybe you recognize that a child needs a quiet space to work, more frequent rest time, is a more visual learner or just needs that little extra support to feel confident. No matter what the challenge, our children are warriors. They work hard to master skills and do not back down from a challenge (resist a challenge, sure, but who doesn't?). If the teacher has expectations of the student, the other children/students will have expectations as well. Exceptions are what takes our child from doing well to being able to reach their full potential.

 
***and here's one more little bonus secret I'm going to let you in on...

6. Prepare for Pure Joy

Recognize that you are about to experience joy, pride and respect for a child that you may not have ever felt for any other child. Our children work so hard for the things they accomplish -- and they DO ACCOMPLISH -- that your heart will just about explode out of your chest when the skill is mastered. You will likely have spent lots of time, energy and effort on teaching certain skills and when they get it - well - that's a feeling that only the most privileged of people get to experience. As a mother, I feel honoured to have been given that opportunity everyday.

 

Disclaimer: Of course, all children are different and work at their own pace regardless of the disability they have. I am not suggesting that this will work for every child or every parent. Nor, am I attempting to speak on behalf of all parents of all kids of all disabilities. These five points are my own opinion. I have been lucky enough to find a team of teachers that do all of these things. Good luck!!! If you have any other points you'd like to share please feel free to leave a comment below.

Cottage Summer of 2016

The summer of 2016 visit to our little slice of heaven in Essex County. It's not only become a place where we get to put it all aside for a time but a place where we welcome friends and family to join us, enjoy the peace with us. They bring themselves, or their entire family and we eat, drink, sit and visit. So chill. Soooooo ideal!!! There's always this little part of me that screaming, "You're kids are logging some pretty sweet memories!!!!!!!!!" and I can hardly stand it. Well this summer visit to the cottage was no different. Beautiful time spent with people we love.

These pics are proof that the girls actually enjoyed the splash pad for the first time ever in their lives. August, 2016 - goes in the books.

We all suffer on a daily basis because Hazel has Down syndrome, especially her Nonna. It's a rough life - really....

NOPE. Not even a little bit!!!

Birdies. Best. Fish. Tacos. EVER!!!!! EVERRRRRRRRR!!!!!!!

Yeah it's always a fair bit of chaos with us, pretty much no matter what, but there's really nothing I would trade them for. Trust me, I've thought this through. Love these people no matter where, when or how.

4 Heart Days

Full disclosure: I wrote most of this on Hazel's actual heart day, where I sat crying and getting really emotional the entire time I was writing. OK - Carry on...

I'm sitting here on Hazel's 4th heart day totally overwhelmed with emotion. I'm not really sure how to even label these feelings. I think mostly it's gratitude. I am just so thankful for our life, our girls, our health - all of it. As the time passes and we log more "life experiences" in our LIFE log book, it becomes increasingly obvious that we are in control of so little. One minute all is well and the next, it's just not. Yeah sure I still sweat the small stuff. I let little meaningless things get the better of me. I loose it on my kids. I get upset about things that don't really matter - sure I do.

And then today happens.

I am reminded of what once was. The reality that 4 years ago, our little baby was handed over to a surgical team to have open heart surgery, comes rolling back into conscious thought. 4 years later, I cry every, single, time, I speak about that moment. The moment we handed Hazel to a nurse, the moment she left my arms - my hands felt so empty. The moment the space between us was entirely to large for my mama heart to handle. While her heart was moving closer to being mended, mine beat there in my chest breaking with each step farther away my baby went.

4 years later - here we are! With a happy, healthy, glowing little girl who has grown and thrived every single day since that devastating moment they took her from us. She has never looked back. Only I look back. When I do, I feel relieved that it's over, blessed to have a perfect little girl and extremely thankful for modern medicine.

I feel gratitude to a degree that I could not possibly put into words. 

Happy Heart Day Hazey!!!!

Sometimes when it's your heart day, you get to go to the toy store and pick out anything you want.

Hazel's Preschool Grad

She did it!!!

With minimal tears and protesting - Hazel participated in her Preschool Graduation. Thanks to her lovely teachers for understanding her and making the necessary changes in the program so that it would be a success. Hazel's not a fan of having her routine messed with and is often riddled with anxiety when she doesn't quite understand what is expected of her. Overall, she did wonderful (as long as Miss Jenn was holding her close and hugging her the whole time). She even stopped a few times to give her VERY proud parents a wave to say "HI." And where there's a Hazel milestone, her extremely loving and supportive family is always by her side.

Along side her classmates - Brooke, Anthony and many others she graduated preschool. I can't say enough about how dedicated ALL her teachers are. They literally live and breathe their jobs. They LOVE our kids. They make it their mission to ensure our kids have the best possible day. A day full of learning, playing, dancing, therapy and whatever else is necessary to help our children grow. Such a fantastic group of teachers!!!

Definitely not the most flattering photos of me but sometimes it's not about being picture perfect. Sometimes it's about SHOWING UP. It doesn't matter if you look the part, as long as you are there with your heart bursting our of your chest, supporting your baby on one of the first school milestones she will experience. That's the good stuff. Being there and present. None of us know what the future holds, but what I can guarantee is that I will SHOW UP for her every. Single. Time.

This milestone is a very bittersweet one. It means she has to leave this place (JMCC), this school, these teachers, her therapists - It's too much for this mama to handle actually. I have faith that this is the right thing for her and that I will pass her over to another set of very capable hands in September. Until then, I am soaking up every last minute that she spends in her home away from home.

Crazy Walmart Lady

Ok listen.

You know when you are getting your groceries and/or shopping (it's usually when you're standing in line) and you hear "that mom" - That mom who is talking at a really loud and almost uncomfortable noise level? Maybe not even talking, yelling(ish)? She's usually scolding her kids about some random thing they are touching that isn't meant to be touched, or standing in the cart when they are supposed to be sitting? They may even be running around her in circles? Hitting and/or fighting with their brother or sister? I've even seen it where the child appears to be sitting quietly in the cart, minding their own business and the mom is still carrying on with the loud warnings and reprimands. You know the mom I'm talking about - I know you do. We've all seen or HEARD her at some point.  Think Walmart.

I could never help but question this mother. And maybe that makes me an Ahole? Maybe I am a judger? Like why must you talk so loud to your child in public? What is that need to constantly be talking or reminding the child of behaviour that is appropriate at that specific time? Are you just used to constantly hearing your own voice and so you MUST. REPRIMAND. AT. ALL. TIMES? I could never really figure it out. Like why do you feel that we all need to hear you discipline your child? I just don't get it!!!!

Except that now I do...

My very beloved and spirited young daughter, Nola (not that I probably needed to mention her name), has made me into the "Crazy Walmart Lady." I am literally always yelling. ALWAYS YELLING. Cause here's the thing about the yelling - she's always in danger. ALWAYS one step away from a serious head injury or inflicting harm on another individual. Or going missing in a huge facility, like a rehab center for instance. LIKE ALWAYS!!!! Often my first line of defense is the yelling.

Must. Capture. Her. Attention. Immediately.

It's loud. It's sharp. It's frantic (and by frantic I mean desperate).

It's the Walmart lady. I am her. This is what I have become.

Now when we are anywhere all together, Matt is always under his breath quietly and quickly growling, "Walmart lady, Walmart lady" just to keep me in check while in public places. And although that sounds maybe like it might annoy me, I am always grateful for the reminder to turn it down a notch. Also, just for the record, I no longer judge that Crazy Walmart Lady (now I feel terrible about the prior judgement), which actually is a huge kudos to Nola that she has actually lowered my standards and expectations to levels I never imagined existed. Well played Nola, well played!

This girl throws 150% in just about everything she does (except for trying to behave when I ask her. For some reason she's good with reaching a solid 30% on that task). She's a passionate, fun, adventurous (as long as she's not scared) and active (she's got the bruised ans scraped legs to prove it) little girl.

There's about a billion selfies with me and her and they all look somewhat similar. Usually taken immediately after she has done something terrible. You know...document every moment. AHEM...The good, the bad, and the extremely terrifying.

This is the 'meltdown in the parking lot' selfie...

This is the 'run away from mommy and daddy in a HUGE rehab facility and hide until they are convinced they will never find me EVER' selfie...

She has a serious talent of being a complete and utter joy to parent and a total train wreck that makes us feel like failures all at the same time.

Nola Charlie everyone...

Crazy Walmart Ladies UNITE!!! I've also been known to be Crazy Home Depot Lady. Crazy Grocery Shop Lady, Crazy Mall Lady. Well...you get it.

Let's GO swimming, swimming, swimming...

If yesterday was any indication of how our summer is going to be - I AM ALL IN!!!!

It was one of those really busy BUT REALLY productive days that make you feel like you CAN in fact "do it all." We visited the school Hazel will be attending in September (more on that later) and it was a fantastic first visit. She was confident, comfortable and interested in the new environment. Of course, we are hoping for that to continue as we move forward. For now we take it one day at a time. Yesterday was the perfect start to her transition.

Then we rang in summer in the only way you can in the heat, swimming and splash padding with our favourite gals. So much fun!!!!

The thing that was most amazing about yesterday was that Hazel absolutely stunned us all day long. First with school and then with swimming. This girl has only been in the pool twice this season (this being her second time!!) and a handful last season. We literally put her in the water and she just knew what to do. Matt and I stood there with our jaws literally dropped on the floor as we watched her confidently, and EFFORTLESSLY, jump and move in the water. Go backwards and forwards, and allowing her face to go under the water at times. We were impressed to say the least and SHOCKED! It was so unexpected. We didn't show her, hold her hand, help her, guide her - NOTHING!!! She just got in and did it.

I knew shit was getting real when this quote came out of my mouth,

"Nola do you see what Hazel is doing? You need to watch her and do what Hazel is doing."

And Nola watched and copied and before we knew it she was holding her own in the water as well. She learned from Hazel. Hazel taught her something. She's taught her things before but htis time, It was literally magic.

Hazel has taught Nola other things in the past but usually not where gross motor skills are concerned. For Nola, this area of development has come extremely easy. She walked, ran, jumped, danced and balanced like it was her job and often on the first few tries. For Hazel, she's had to work really hard and usually receives intervention/therapy to learn new gross motor activities. BUT NOT YESTERDAY!!!! NOT IN THE WATER!!!! She got in and owned it. She knew what to do. It was like second nature. I mean, I know there is more for her to learn where swimming is concerned but what more can I ask other then watch her confidently try to get in and negotiate the water all on her own first.

NOTHING - THAT'S WHAT! She's amazing and I am so proud. 

Here's a little summer lovin' from Lilly and Nola. Hope you are all out there exceeding expectations and showing the world your worth.

 

 

Super Heroes Fun Day at the JMCC

We spent the better part of Sunday celebrating the John McGivney Children's Center for their annual Super Heroes event. This center is such a valuable resource to our family, we were very pleased to see so many people attend (including dear family and friends). They choose to brave the heat and support a worthy cause.

Nola had a blast pretty much everywhere, doing everything. Hazel really rather enjoyed sitting in the stroller and eating her chips. As long as we were all happy!!!!

Such a great day!!! We hope the center was able to raise some money for the JMCC summer camp program.

Summer 2016 Remix

As far as the "summer bucket list" goes, we have wasted no time in starting to tick things off. We can barely wait to live summer time again - the 2016 remix. The girls are bigger, older, and they like different things. I mean in the grand scale we will probably do a lot of the same bucket list things as last year, but this year those same old things will be brand new all over again. Life with growing children can do that to you indeed. They keep a park we've been to a million times exciting every time we go. They get a little more brave, more able to do the bigger slides and be pushed higher on the swings. It's so legitimately fun to watch them experience joy. I have laughed so much already at the joy that is kids (I have also cried at the terror that is kids as well but that just just fit into this post full of joy and butterflies...onward).

The girls are rarely indoors on the nice days - meaning little to no TV - meaning mommy is very happy. I don't HATE the TV, not in the slightest. I just HATE a lot of TV. I am certainly a European in that I truly believe that children must be outside every single day in order to grow. Let's just say nothing makes me feel like a better mother than when the girls can be outside playing, using their imaginations and breathing in fresh air (well that and when I sneak vegetables into their food - suckers!!!). 

Looking forward to this scene over and over and over again this summer. I was smiling too, just for the record.

Happy summer planning to you all!!!

Mother's Day 2016

This was my 5th Mother's Day. Five. The novelty will never wear off on me. I appreciate every single one. I earned every single one. Every single one that passes, I take a minute to remember just how sad this day used to be when I was not yet a mother. Infertility is a dark horse. You ride it everywhere. It gets to decide if you jump, or run, or stand paralyzed unable to move even one step forward.

This year I scooped up my kids, let them fill my arms while hugging and kissing them in between laughter. I couldn't help but be overcome with a thought: I don't know who or what I would even be without them. Had 5 more years passed and I still not become a mother - become part of what my soul was meant to become - I don't know. I shutter to think. Not every day with them is easy. As a matter of fact most days with them are not easy. I may find myself wishing for peace and quiet on the regular, but in the end it's them I want more than anything. The loud, irrational, funny, colourful, emotional, chaos they bring to my life is precisely what my life was missing before.

Because of them, now I fly around on a Unicorn.

We spent the day with some beautiful mamas...

These five gals are way too much!!!!