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!!!!

April Showers

I feel that that there's this pull right now to "disconnect", to put our phones down and walk away. Or if you are anything like me, to bury it deep in a drawer somewhere so you can't hear the vibrating, dinging, whistling and whatever distracting noises that call out to us. We should go play with our kids, or clean our houses, walk the dog, read a book, make the world a better place or whittle something out of wood with our own 2 hands. I feel like I keep logging on to social media and reading about all the "disconnecting" and "unplugging" that's happening on said social media outlet. I don't know I just overall feel, confused. What should I be doing? Unplug? Connect? Go old school and make something with my own two hands? Or should I pick up my phone and check in on all the amazing friends we have made and their absolutely amazing kids. See the latest blog posts, or keep updated on the recent philanthropy efforts. I don't know...

The real question is the blog - Like is blogging still a thing? Or are we so unplugged that we don't have time for a blog as a distraction anymore? Or maybe I just feel uninspired at the moment. Or maybe it's the 2 tiny humans I live with and "work for" that are leaving little to no time for the luxuries in life like (and now I want you to imagine me using air quotes while reading this next line) "blogging" or "sitting" or "showering" or "peeing alone" or "keeping it cool" - oh, wait - have I said too much?

I digress....

So here we are in April and needless to say there has been crickets chirping around here. If you happen to be among that part of society that is still plugged in, WELCOME!!!! Nice of you to stop by.

Nola and I went on a trip to see some family up in Peterborough a bit ago. Matt couldn't come and negotiating two kids seemed a bit of a difficult task. Nola seemed like the reasonable choice. While it was amazing to see and spend time with our fam, it quickly became apparent that Nola was the wrong choice. She was a nightmare. Completely unreasonable, totally irrational, refused to sleep in her own space. Then when I let her sleep in bed with me, I ended up huddled in the fetal position all the way at the foot of the bed (picture any common house pet). All the while, Matt was sending me pics/texts of him and Hazel out and about spreading joy and happiness everywhere they went. Let's just say I had regrets.

Who let the Hot Mess into the candy store??? And yes she was a hot mess, temper tantrums and all. I feel I may have set her up for failure with the T shirt. Still, she must assume some of the responsibility. But then I gave her an M&M and chocolate covered pretzel so then I guess the onus was back on me. FAIL!!!!

This is the pic I was sent from Matt. It kinda seems she's having a little chuckle at my expense. Like, "AHAHAHAHA mom!!! You brought the wrong kid!!!!"

We still have lots of little projects on the go from our kitchen reno, that turned into much more. My vision and Matt's work lead to the most perfect Douglas Fir shelves in the kitchen. We are in love!!!!

Nola is always being forsaken - just ask her.

She is obsessed with bugs and creepy crawlies of any kind. Every insect she calls "NicoBug" She is always on the hunt for NicoBug and want to hold her, hug her and kiss her (yes it's always a her). As soon as she spots one she screams, "Look at her!!!!"

I mean ZERO explanation necessary...

Matt had a work function so we escaped for one night to Toronto. We were able to talk to grown ups all night!!! It was so lovely to catch up with so many of his colleagues and friends. There's a definite story about the bus. Long story short, I thought I was taking a selfie and because of the glare I couldn't see that I forgot to turn the camera around.

These 2 gals are most certainly keeping us busy on the home front. Nola is a work in progress and we are hoping to one day see some positive results from all the disciplining that is done around the house. When we are out, she's perfected the make 'make-mommy-look-like-a-complete-and-utter-flustered-mess' act down to a science. In fact, when I am with her I almost always feel like there's nothing that I could possibly do to convince on-lookers that I am actually an intelligent and organized person. Hazel on the other hand, is such a sweet little lady. When we go anywhere it's usually smiles and sweet little greetings for all the people we come across. And yes she has her moments as well, but they just seem a little less "ragey" than Nola's moments. Good thing I'm not into comparing. Let's just say I was, Hazel would have more pluses in the "PRO" column. Gotta love 2 year olds.

The love they have for each other grows daily. I will often stumble upon a scene of them kissing and hugging each other. I also stumble upon scenes of yelling, hitting and pushing but the good is creeping up on the bad. They are starting to have little conversations with each other now. It's pretty adorable.

OK - onward. Happy Friday!!!!

Our Reading Program

After a recent post on IG and Facebook, several people have asked about the reading program we are doing with Hazel. I am happy to share what we have been doing.

Here is an overview of what we are working on now to teach Hazel how to read. I am only sharing to give you ideas to use as you see fit for your family and children. We all learn differently and this should in no way influence your decisions about educating your children however you like. There are a lot of amazing parents out there doing some really amazing work with their kiddos.

Actually, if you have any resources you would like to add to this list please feel free to post a comment on this post.

Before I began any specific reading program, I did a ton of research/reading on how kids best learn to read, specifically at such a young age. I read and watched all this material before I decided on the type of program that was manageable for us. I also spoke to a friend of mine who has a child with DS, who has had a lot of success from using some of these resources as well. She was frequently texted and bombarded, by me, with questions about the best places to look for information and specifically the reading program. I would probably add her to the list of the resources on this page (hehe).

I want to point out and stress that I have not done any of these programs just as they appear. I just go at Hazel's pace and try not to let her get bored. It has to be just fast paced enough to keep her stimulated and not to fast to make her uninterested or frustrated. I always do the cards when we are all in a good mood (so you can see that can present it's own challenges). The girls actually really like the flash cards so it's not as difficult as it sounds. They see them and they are happy!!!

Our reading program started out with 5 words in one week, read at least once per day (sometimes twice). The second week I added 5 more words and the girls really enjoyed the flashcards so they ask for it about 2x per day. I do the words 3 times each. I always stop before they want to stop and while they are having fun. I am silly,loud and overly animated so that they think it is super fun and they are engaged the whole time. I do not expect them to repeat the word but often times they do anyways. I do not do the speed flash method at this point because the girls are having fun going at the pace we go now. I will do it in the future if they seem to be bored. Hazel is picking up the words very quickly and I may have to increase the number of new words I add, I will just take it at her pace plus make sure I am challenging her in a productive way. Just go at your own pace and enjoy!

Here are the resources/links I used:

Book by Glenn Doman:
I got the word list from the Glenn Doman book and using things that I know Hazel likes.

http://www.amazon.com/gp/product/0757001882?ie=UTF8&tag=trilaplif-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=0757001882

Fast Flash method

http://specialreads.com/blog/do-it-right-fast-flash-tips/

Grabbing the Interest of Children with Down syndrome

http://specialreads.com/blog/how-do-you-teach-reading-to-a-child-with-down-syndrome-go-in-through-the-heart/

Scroll to the bottom of the page and there is a Q & A about teaching
individuals with DS how to read


http://specialreads.com/

I watched this 11 part seminar on the NACD website:
http://www.nacd.org/who-we-help/down-syndrome/

I did a lot of poking around on the NACD website:

http://www.nacd.org/

I am also listening to the 2 podcasts on iTunes from the NACD called:

Down syndrome Part 1 and Down Syndrome part 2:

Some of the same material is covered in the seminar I shared above. I found
the seminar easier to listen to but the podcast has some different info so
worth a listen. There are parent testimonials and experiences included in
the podcast. I found it helpful to listen to the seminar before the podcast
but it's totally up to you.
 

Happy reading and Good luck!!!

The Easter of the Egg Hunt

easter8 (1).jpg

Easter was early this year - which I HATE!!!! Here's why:

Easter is a holiday that celebrates new beginnings, new chapters, new growth and new adventures. So in my opinion, it is crucial that, at least some of the day, be spent outdoors experiencing these "new beginnings" and "new growth." We need to be with the new, fresh smell of the earth and the lime green colours of the freshly popped buds. March doesn't lend itself to this type of activity. Usually in March (around these parts) it's cold, miserable, and sometimes even snowy. The harshness of winter is still looming. Making people (and by people I mean ME) TOTALLY over the cold, damp, stink of the cold, hard ground. BLAHHHHH!!!! Every now and again we have Easter at the end of March, guaranteeing an indoor event with very little capability of an egg hunt or other outside festivities, with no opportunity to receive the greatest gifts the Spring has to give - the freshness of the air and newness of Mother Nature.

EXCEPT FOR THIS YEAR!!!!

This year March was kind and generous for Easter. The sun was shining so very bright. It's possible that it was the brightest it's ever been. It dried and warmed the ground just enough to allow us easy passage for hunting but kept it just damp enough so we didn't forget that Spring was the season. We were outside most of the day chasing butterflies (Ok - do you want to puke yet? We were NOT chasing butterflies, but we would have if they were around is all I am saying). We were outside Egg Hunting at various places all day. Both the girls were super excited this year to find, search and collect the eggs.

Nola was on a mission at every turn, running, searching, collecting and then dropping the previously collected eggs out of her basket as she bounced along looking for more treasures. After about 20 minutes of hunting as she came upon another hidden egg. She approached it cautiously and in her loudest, deepest, growlyest voice, she said, "AWWWWW, CRAZY MAN!!" while shaking her head. To which we all immediately died (and then Easter was over cause we were all DEAD). 

Hazel was ever so slowly searching and gently placing each egg in the basket pleased with only having 2. She was just happy to be there with everyone, outside and free. Also, she was thankful that we stopped trying to make her eat the very delicious breakfast that was made with love by her Mim, that we all enjoyed immensely. How dare we try to offer her a beautiful, home cooked meal? I have a feeling the chocolate for breakfast from the Easter Bunny didn't help.

Poor Hazel was sick again this year for Easter but she did manage to enjoy some of the day out at the farm. Both girls had an amazing time out there. So much room to roam, chickens to visit (with real eggs to collect), eggs to hunt, cousins to play with and amazing food for dinner. It was the perfect Easter Day - EXACTLY what every Easter should be like.

One of the top 3 moments hands down... I was watching from a distance as Nola ran out onto the pasture pictured below. I could see her outstretched arms and little body twirling around and around. A few minutes later I met her and Matt out on that pasture. He told me she ran out there and immediately started singing, "The Hills Are Alive" like she was in fact Julie Andrews and on The Sound of Music. And it was at that moment that I realized I am NOT completely failing as a mother. I mean - The SOUND OF MUSIC IN REAL LIFE - COME ON!!!!!!! #allidoiswin

Another top 3 moment was this one...

Our kids fell asleep on the way out to the farm creating theeeee ultimate opportunity for a delicious, alcoholic bevvy on the driveway. We kinda had to, or ya know, bad karma for future Easter Holidays.

Happy Easter Everyone!!!

World Down Syndrome Day 2016

WDSD 2016 was a HUGE success!!!!

We had so much support out there in the community rocking their socks and making the commitment to educate people about what it really means to have Down syndrome. Down syndrome is just a small part of what makes people who they are and I feel the message was heard loud and clear on WDSD this year. People with Down syndrome were recognized for the valuable role they play in the community and for how much have to offer the world. We celebrated individuals with Down syndrome that have attended school programs, gone to college, obtained gainful employment, and who live everyday just as the rest of us do.

Here is the media coverage we were able to generate before and on WDSD 2016:

The Windsor Star - The Chance to Celebrate beautiful Lives - http://windsorstar.com/news/local-news/world-down-syndrome-day-a-chance-to-celebrate-beautiful-lives-says-windsor-mom

The Windsor Star - St. Clair College Students Rock Their Socks for World Down Syndrome Day - http://windsorstar.com/news/local-news/st-clair-college-members-rock-their-socks-for-world-down-syndrome-day

CTV News gave us a shout out and well as AM800 CKLW - WOOT!!!!

I have added some pictures that we were tagged in or that used the #chasinghazelwdsd2016 hashtag. I am so sorry if you don't see your pics here. I was trying to stay on top of it but we had so many tags!!!

IT WAS INCREDIBLE!!!! Thank you kindly to everyone who participated.

Very thankful to live in a community of people who accept and love so freely. Happy World Down Syndrome Day 2016!!!

WDSD in Our Community

Why World Down Syndrome Day (WDSD)?

WDSD exists to celebrate individuals with Down syndrome by choosing activities that show support and awareness to those individuals. Rocking Socks has become and easy, attainable and VERY visual way to demonstrate this support around the globe. We are seeking to share what it IS to have Down syndrome - something to be celebrated. We are advocating for the inclusion, respect and understanding that individuals with Down syndrome have a great deal to offer their communities. This day occurs on the 21st day of the 3rd month because we celebrate the 3rd copy of the 21st chromosome which is what makes Down syndrome.

I am absolutely thrilled with the willingness and number of members in our community who have committed to educating and promoting the inclusion of individuals with Down syndrome this year for WDSD. They have vowed to not only Rock Their Socks but have agreed to know WHY they are doing so and to educate others.

Here is a list of some of the organizations that have joined the WDSD Rock Your Socks campaign this year:

ALL of the Ontario Early Years Centers - So amazing!!!!
http://www.edu.gov.on.ca/childcare/FamilyPrograms.html

A group of schools from the Greater Essex School Board:
Hugh Beaton - https://publicboard.ca/schools/beaton/Pages/default.aspx
Dougall - https://publicboard.ca/schools/dougall/Pages/default.aspx
David Maxwell - https://publicboard.ca/schools/maxwell/Pages/default.aspx
West Gate - https://publicboard.ca/schools/westgate/Pages/default.aspx
Sandwich Secondary School
Massey - https://publicboard.ca/schools/massey/Pages/default.aspx

Tecumseh Vista Academy - https://publicboard.ca/schools/tecumsehvista-elem/Pages/default.aspx

Several Daycare Facilities:
ABC Nursery - http://www.abcchildcarewindsor.ca/
Francosol - http://www.godaycare.com/ontario/belle%20river/Franco-Sol+-+Pavillon+Des+Jeunes/3195/1

The Children's House Montessori Lakeshore - http://lakeshore.tchmontessori.ca/?_ga=1.83824403.440616686.1457999477

Ironcore Kettlebell Gym - http://www.ironcorekettlebellclub.com/

A group of schools from the Windsor Essex Catholic District School Board:
St. Williams Elementary School - http://stwwecdsb.blogspot.ca/2016/03/mrs-pearce-grade-3s-rockin-socks.html
Holy Name Elementary Essex
St. Bernard in Windsor - https://sites.google.com/a/wecdsb.on.ca/stbwweb/home
Holy Cross Elementary - https://sites.google.com/a/wecdsb.on.ca/holycrosswebsite/
St. Gabriel Catholic School - https://sites.google.com/a/wecdsb.on.ca/stgabriel2012/
Lassoline - http://mail.wecdsb.on.ca/~160/

AND MANY MORE...

A handful of faculties at the St. Clair College - http://www.stclaircollege.ca/
The John McGivney Children's Center:
http://www.jmccentre.ca/
The Town of LaSalle
http://www.town.lasalle.on.ca/en/index.asp#
The Town of Tecumseh
http://www.tecumseh.ca/
Essex County Diversion Program/Youth Diversion
The University of Windsor - http://www.uwindsor.ca/


There are so many I am losing count!!!! What an amazing problem to have. Among these that I have mentioned and those that I am sure I have missed, we have also had information shared in the GTA, St. Catherine's, Sault Ste. Marie, Peterborough and various places in the United States.

I am so excited to celebrate with some of our participating community members next week on World Down Syndrome Day 2016. I have said this before and I feel I will say it again in the future but it takes a village to raise a child, especially a child with special needs. We happen to live in one of the strongest most supportive villages I know. Thank you so very much for your participation, love and support!!!

Don't forget to tag us in your pics on WDSD at:

#chasinghazelwdsd2016

Diamond in the Rough

It's always about this time of year we start to feel cabin fever set in. We have been trapped indoors for a couple months now, with the odd day outside here and there, but certainly not on the regular. This morning I woke up to an ice storm. Feeling defeated is an understatement.

I was out running errands yesterday and everyone around me just seemed angry. Well the guy who "shhhhhed" Nola in Home Depot - he actually was angry. When I went all mama gangster on his ass he was really pissed. I was all - HELLLLL Naw -  "you don't shhhh my kid." I mean all she wanted was a bag of chips (that I was using to bribe her to sit in the cart like a good little angel while I got what I needed - which as it turned out they didn't have in stock). SO that was fun. Let's just say it ended with him turning down his hearing aid and me giving Nola 2 bags of chips. But the moral of the story was...

I actually went to AND SURVIVED a trip to Home Depot with my kids (insert thumbs up emoji)

So today I am going to think back a few days when we were extremely lucky to get out for a wonderful day spent with our family at the cottage. The sun was shining, the temps were high and the girls all had an absolute blast. It was a rare beauty, that day. The kind of day that promises more days exactly like it are just around the corner. The kind of day that gives you a little gleam of hope that the winter is almost over. The kind of day where you can almost hear spring politely knocking and welcoming itself in with a basket full of daffodils and tulips. I imagine, it's kind of like seeing that shiny little diamond off in the distance surrounded by a pile of ruble. This is the day that is going to get me through all the rest of the days until I am watching the tulips poke through the freshly thawed ground.

I know they say that fairy tales only exist in the fantasy land of books and movies. They say that real, honest and true love isn't a "walk-off-into-the-sunset" kind of reality. Well, whoever said that doesn't know these 5 girls. I guarantee you that this is the happy, "walk-off-into-the-sunset" fairy tale ending every. Single. Time.

 


Gearing Up for WDSD 2016

World Down Syndrome Day 2016 is almost here!!!!!! This was us from last year...

We are SUPER excited this year about our efforts to make the day the BEST it can possibly be out in the community. It is partially the reason why this blog space has been so quiet the last little while. Trust me, just because it's quiet here doesn't mean that I am not pounding the pavement everyday to advocate and educate our community about DS. And a willing community they are!

WDSD exists to celebrate individuals with Down syndrome by choosing activities that show support and awareness to those individuals. Rocking Socks has become and easy, attainable and VERY visual way to demonstrate this support around the globe. We are seeking to share what it IS to have Down syndrome - something to be celebrated. We are advocating for the inclusion, respect and understanding that individuals with Down syndrome have a great deal to offer their communities. This day occurs on the 21st day of the 3rd month because we celebrate the 3rd copy of the 21st chromosome which is what makes Down syndrome. To read more about WDSD visit: https://worlddownsyndromeday.org/

Over the last 4 years, World Down Syndrome Day has become one of our absolute favourite days of all time. It's a day where the WORLD celebrates individuals with DS. Social media channels explode with support, love and stories of accomplishments. Families share their children and all the pride and love they have brought into their lives. We here at Chasing Hazel are no different.

So far the community support we have received is outstanding. It literally brought me to tears yesterday. My heart is swelling daily as new people message me and ask how they can be a part of the day. We have firm commitments from 8 grade schools - who have pretty much made it a school wide event to rock socks and share a fact a day about DS. A local high school who will also be rocking some socks. The St. Clair College who has taken us in and adopted us as their own. They are planning on being a HUGE part of our day. More details to follow. Over the weekend the number only grew with more schools and other local organizations reaching out wanting to be a part of the celebration. So as of now there are over 20 different places committed to Rocking Socks for WDSD.

We would be honoured if you would...

Rock Your Socks

with us on this very special day. Be sure to tag your pics so I can share them all over the place!!!!!

#chasinghazelwdsd2016

Leave a comment on this post or email me if you are interested in joining the celebration!!!

Hazel's 4!!!

She's 4. I know, she has been for a while now - HELLLLLLLLLLOOOOOO!!!! I feel bad TRUST ME!!! Let's just apply the better late than never philosophy here and move right along.

Some pics of this sweet little nugget on (or around) her special big girl birthday. The birthday that made her 4, that makes her of school age (I am struggling with that one for sure - if we are being honest with each other).


Gold Medals

Hazel's 4. I know, it doesn't seem real - I assure you it is. Hold on while I take a short break to cry all the tears. 4 - hmmmmmmmm, ok - 4. It got me thinking over the last little while. Here's what I've come up with. Besides the fact that these newborn pics of her are pretty much making my LIFE at the moment. She's a wittle nugget #allthehearteyesforhazel

Every single day that passes Hazel becomes more sweet and loving than the day before. She's more perfect today than she was yesterday and tomorrow, well - even more. To tell you the truth, I often feel that Hazel is too good for me. I feel like she deserves more than I can offer. Especially the really challenging times. Trust me there are A LOT of challenging times when you have a 4 year old, that has 4 year old problems/needs but does not have a 4 year old vocabulary to express those wants and needs. There is a definite limit where patience is concerned on both our parts. SO, I can't help but feel that someone else may be just a little bit better for her in that department.

Side note: I am not looking for affirmation here or saying any of this so that y'all can tell me how amazing I am. I am just being myself - real, honest and true - calling a spade a spade..

The other day I was lying with Hazel trying to put her down for a nap. It was a hard day, a hard week. A busy, chaotic, illness infected week. There we were all snuggled together. I had my nose pushed up into her neck and chest, my arm around her waist. She had her perfect little arm stretched out over my neck. Her jaw was just grazing the top of my forehead. Resting there just so. I listened to her breath. I could tell the instant she fell asleep, I didn't have to look up. As I lie there with her, I couldn't help but feel like she was the one comforting me. I felt so vulnerable like I was the child. Her arm draped over my neck as if to assure me I was safe. As I was lying there, I was thinking how frustrated I was, how hard the week had been, how she deserved more. More than a mother that loses her patience, gets annoyed and can't make her little girl happy no matter what she does.

I laid there and tried to imagine her "perfect" mother. Who would it be that would be the BEST for Hazel?

What I saw was that when it comes to LOVE there is no way, NO WAY, anyone on this planet could love her more than me. I love her for who she is, just as she is. I love her even when I don't like her. I love her hard and real and with more compassion than anyone ever. Because if we are talking about love than I take home the Gold.

Then I thought about PRIDE. I will guarantee you that there is no other person who could be as proud of this little nugget than me. There is not a mom on this planet that will jump higher, yell louder, advocate better, celebrate even the tiniest of accomplishments with more enthusiasm than me FOR HER. So I think, for pride I take home the Gold.

When it comes to opportunity, I will make every effort in my humanely and inhumanely super-mom-power (even if it drives me into the ground) to ensure that Hazel is given every available opportunity that she deserves in life. And some that she doesn't just so she has options. So for providing opportunities, I take home the Gold.

And in the end even if there are other moms out there doing 5x the advocating that I do, or who love their children 10x more than I do (doubt it - HA) - I know that I am doing my absolute best to provide for Hazel. To give her all that she needs and then a little more than that.

I guess in terms of patience, if the gun goes off, the race finishes, the medals are being given out and I am still stuck behind the starting line fumbling with my shoe laces (probably really frustrated and patience running thin), well - I don't even place in that race but it's OK because I'm already carrying enough Gold to make up for the things that I lack. I am carrying just enough Gold to feel proud when I walk up to Hazel to share my winnings with her. With these Golds I can prove that I am doing my best.

4 is a big year. A year where she will sprout those wings just a little more. She will start school (whatever that might mean) and she will grow a little bit more independent. I don't know what else 4 will hold for Hazel, or for us, but I know that I will be there to make sure 4 is her best year yet.

This kid!!!!!! #stillallthehearteyesforhazel



7 Days In

2016. Well then - Hello there! You kinda just barged into my life quickly and without knocking (I'm getting a Kramer busting through Jerry's door image at the moment) so I guess - WELCOME.

What can I say about 2015.

Let's start by saying, we literally filled it to the brim with new experiences. We vacationed, we relaxed, we renovated and above all we had about a zillion dance parties. We celebrated birthdays, holidays and the normal everyday routine. The girls are growing, thriving and learning. I am incredibly thankful for that. Everyday they change. Everyday they grow. I am finally starting to see that even the bad days are days they get a little older, a little bigger than the day before. I put them to bed and I silently take note that this is a day we will never live again. Sometimes feeling so VERY grateful the challenging day is coming to a close, with a vow and prayer to make tomorrow a better day and other days feeling a little melancholy heart ache about the time spent ending. I'm mostly thankful for bedtime, but sometimes I miss them when they sleep.

I can't even begin to wrap my head around the change that has taken place over the last 365 days. I do know I am thankful for the opportunities we have taken together. At this moment, I am even thankful for the really hard, pull your hair out, everybody crying together days that make the days that aren't like that seem glorious (ask me again when I am in the midst of one of those days and the sentiments may change a tad than a day when I am sitting alone in a coffee shop, children in daycare).

One of my favourite things to do in the new year is look back at the IG posts from the last year. It takes me a few days to really get through it all (hence the post 7 days in) and really remember the year's experiences. It's a year in snapshots, usually of all the biggest moments.

In conclusion, 2015 was a fantastic year.

I can't help but see that our cup - forget the cup - BUCKET runneth over. I am looking forward to what 2016 will bring. I love the mystery. I love not knowing exactly what opportunities will arise, which path we will go down. I know there will be talks of school for a little gal named, Hazel (I CAN'T), there will be family vacations, new friends to meet, and new community endeavors to be had. Moving forward is a good thing, a positive thing even - but even more important is remembering to be grateful and appreciative for what we have already been given.

Thank you 2015 - you were kind, gentle and considerate. You will be missed and thought of fondly in years to come.

Happy New Year everyone. To new beginnings. To being our best selves. And to knowing we are already enough.

 

The Year I Wrapped the Presents Too Tight

We call it Christmas of 2015.

I am pretty sure it was here. My waist line is a slight reminder that there was in fact, some excellent meals that were shared with those we love. I am almost 100% positive Santa just made a special delivery and dropped it under our tree for the girls to enjoy. If I remember correctly, I made sure we were ready ahead of time with neatly wrapped presents, the equal amount for both girls. Sticking to the tradition of something you WEAR, READ, WANT, NEED. And then of course, whatever Santa decided to bring. Which I have to say was just the right amount. Good lookin' out Santa!!! So for those reasons, I am sure Christmas was here.

With the house reno going on over the holidays, it was extremely difficult to get as festive and relaxed as we would have liked. We managed to put it on hold long enough to have some really lovely visits with family and friends. The kids stayed relatively healthy this year over the holidays, which was a huge blessing and not something we are used to around here. So come Christmas morning we were all in perfect condition to really enjoy the time together.

The girls being a bit on the young side still meant that they really had no idea what it meant when we told them Santa was coming in the morning to bring them presents. We opened our "night before Christmas PJs" and went to sleep (at midnight). Turns out, they really didn't need any knowledge of his arrival, they saw the tree, with the perfectly wrapped presents under it and they were excited. So FUN!!!! It was perfect.

Nola rushed over to the tree and started to look around and play with the toys that happened to be unwrapped. That Santa, he's a smart one! Hazel followed very quietly behind and waited to be handed a new toy.

The girls started with their stockings. Hazel found the 2 wands in there and that was it. She was happy. Off she went to reenact her favourite movies, sing songs and hum to herself (loudly). So basically Nola got to open all the presents for both of them all by herself. A special gift that she was very excited about - Until she started trying to unwrap and quickly got frustrated with the amount of tape that was used on each package. I do remember a grunt and a slap to one of the gifts. Matt was promptly nominated the assistant to the present opener (Nola) for the rest of the morning. OK - so I am not as smart as Santa who leaves his presents UNWRAPPED - I get it. TOO MUCH TAPE!!! You try to make everything perfect and the tape gets in the way. Sigh...The best laid plans...

Once the presents were all opened and displayed, Hazel decided to make her rounds and check out each new toy. Sitting for a moment or two with each one checking them out and assessing their worth. The play session briefly interrupted by a raging Nola, but we quickly remedied that situation by feeding her. How dare she want to eat on such an occasion. Our traditional Christmas morning breakfast. There's nothing, in the world, better than this breakfast, on this morning. For the maximum dining experience, eating it while watching National Lampoon's Christmas Vacation really steps it up a notch.

In my opinion, we know how to do Christmas morning.

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I really hope you all enjoyed your holiday season. It comes and it goes so quickly but what a magical time it is. I enjoyed putting everything on hold for a while (a couple of days) and being with the people we love (having dinner cooked for us every night). HAHA!!! #nobutseriously Escaping to lots of warm hugs, delicous meals and full glasses made the season bright.

A couple of things:

1. Matchy Matchy Pjs make me very happy...

2. Nola and Hazel rocking out to Adele "Hello" (mostly Nola) is enough to make even the Grinchiest (word? spelling??) person smile...

3. Pretty sister pics while all dressed up, sitting at a piano almost like we are civilized MUST be in black & white.

Now that the Holiday is past we are back at the house reno in full swing (and actually during most of the holiday). It seems that I have replaced my mop and pail for a paint brush that is now perfectly molded to my hand. We are loving the outcome so far. Making our home a little more "our home" is always a satisfying feeling. Feeling very grateful to have been able to make more memories and share special moments with my people.

Peace & Gratitude

Christmas Is Here

We have been crazy around here. Every spare second I have is literally spent on our kitchen renovation. Which, by the way, is coming along very nicely. However, I literally feel like my vacuum and mop are perfectly melded to my hand at this point. I have visited ALL the local home building and hardware stores so many times, I am sure they all run when they see me coming with my phone out and my Pinterest boards open.

Also, Christmas is, well - here!

Besides the house stuff happening, the general atmosphere around here has been centered around Kids Christmas Songs and The Sound Of Music on repeat. There has been almost ZERO cooking or baking of any kind, however, I did manage to bake cupcakes from a box yesterday (insert thumbs up emoji). I totally respect my kids for loving The Sound of Music and will forever be grateful to them for making my dreams of being a mom to girls come true this year. Also, the kids Christmas songs have made for some very interesting dance parties.

Moving into the shut it all down stage of the Holiday, I just wanted to make sure to take a second and wish you all a fabulous holiday season. I hope that in the midst of whatever chaotic stage your life is in that you find some time to rest and be present. And as always, I wish you PEACE. 

Merry Christmas from our crazy clan to yours!!!!!

Holiday sweater from Hip Little Babes - LOVE!!!

They are both actually saying "Merry Christmas" this morning...

Very sophisticated at our house...

Obligatory Santa visit. Met with some resistance but overall it was a success. Although, I will say I do enjoy the screaming baby thing that usually happens with Santa visits. and on that note...

Much love to you all!!!! Be safe, happy and healthy this season.

Settling in...

As a side note before we begin, I have been writing this post for at least 2 weeks.

It appears that somehow, someway it is time to settle in for winter. I am not quite sure how this keeps happening. I am really trying to master the art of not blinking, in hopes that if I do the time will actually have to stop. I have tried making my kids stop getting older and from growing, but I feel like to be really effective on the not growing part I would have to stop feeding them and that might result in getting them taken from me altogether so that seems not a viable option. Anyway, the kids are huge, I no longer have any babies and it's time to settle in and embrace the fact that the cold is coming.

Christmas prep is well underway. I really like to try to be done all my shopping by December. It's certainly a lofty goal but I get really close every year. I am not a fight crowds type of person. Actually, let me come right out and be honest:

I HATE SHOPPING!!!!

I hate it especially at Christmas. Driving to the shops stresses me out, people are crazy. Everyone's all in a rush, and angry and rushy. UGH. I can't!!! It really doesn't leave a person feeling full of peace, joy and good tidings. Ya feel me? Rant over. So getting it done ahead of time is just good planning in terms of sanity.

Christmas has really never been my favourite time of year. I feel like everyone is always stressed out feeling the constant need to buy gifts which, to me is the opposite of what it's all about. It is supposed to be a time of peace, togetherness and gratitude. Most of the time people feel pulled in so many directions that it's difficult to be present and just enjoy and appreciate what we have. Until I had kids.

There's just something about a kid at Christmas. They are the perfect antidote to losing that magical Christmas spirit. The way they look at everything with wonder like everything is full of magic - like if they touch it magical shooting stars may start circling and that inanimate object might just come alive. It's like they know, even before they know, that something grand is coming. They remind me what this season is really all about and help me to stay focused on what is indeed important at this time of year:

Family - togetherness - peace - love - gratitude

and MAGIC, let us never forget the magic

IMG_8516.jpg

We have watched the first hour of this movie about 10 times in the last 2 weeks. I always stop and get sucked in or at the very least fight the extreme urge to sit and watch with them every time. The 'Hills Are Alive' is a definite front runner, with requests for the song again about 10 times in a row until I finally have to stop and let the rest of the movie play. Julie Andrews is the absolute best EVER!!!!

As another side note: This is a screenshot of my camera roll. I am literally knee deep in a kitchen reno and that is 100% the reason for my absence around here. Every spare second I have is planning, painting, working, buying, searching, pinteresting, and cleaning. It's exciting and MESSY!!!! But also, exciting.

Hoping you are all getting ready to settle in for a lovely Christmas season.