OFF TO COLLEGE - February Play Session

Honestly GUYS!!! We had the best time at the last play group. LIKE I CAN'T EVEN!!!! 

First, I have to brag about the volunteers from the ECE/Concurrent Education program at the St. Clair College (where the play groups are held). 

AMAZING!!!! ABSOLUTELY WONDERFUL!!!!

They not only do they LOVE our kids - LIKE ALL OF EM - they are the most lovely people to be around. They are so genuinely happy to be there and hanging out, playing, dancing, playing dolls - literally whatever the kids want to do. Each playgroup we have, I see them become so much more confident with the kids. It really is a beautiful thing to watch. Each of our kids pretty much have their very own buddy for the entire time, which totally frees up the parents to hang with each other and talk. We are free to float around, relax and visit, play with the kids, talk with the volunteers (who are lovely by the way, did I mention that?), there are so many options.

It is the perfect scenario. Everyone wins!!! 

What I love the most (besides the volunteers) is, because the siblings are welcome to come to the playgroup, we've created a fully inclusionary environment. I mean, I know Nola has experience with Hazel who has special needs BUT not every kid with DS is like Hazel. There is a great deal of variation among kids with DS, just as there is with all children. It really gives all the kids a chance to BE TOGETHER, make new friends and experience the diversity that exists in the world of Down syndrome. 

My heart was really full leaving that last playgroup.

Until next time!!! xo

OFF TO COLLEGE - January Play Session

Well it was a success!!!!

We had around 20 families out in one night. We danced, coloured, played, hung out, and laughed. LOTS OF LAUGHING. I finally got to meet some new families that have been online friends and it was AWESOME!!!! There were a variety of activities for the kids to choose from and LOTS of super excited, enthusiastic Concurrent Education/ECE students there to help facilitate the activities and events. They were more then happy to hold and snuggle the sweet babes or chase, play and dance with the older children. 

Thank you to representatives from Children's First and the JMCC who were there as a resource to new parents and share a little bit about the services they have to offer to families in our DS community. 

HUGE THANK YOU TO the student volunteers and their fearless leader, Kathryn. Of course to The St. Clair College for providing the space.

ALSO, FAMILIES!!!! I am so glad you came out to see what the play group is all about. Hope we can keep it going strong. 

Next session: 

This Girl is 5

She's 5.

You'd think after these last 5 years with her that I would be used to her making me have all the feels, all the time. I'm not!! This here, what I got goin' is a "I can't believe it's been 5 years since this child has entered our lives and changed so much about what we stand for, who we are and how we love" feeling. It takes me by surprise because each year with her opens me up to so many new experiences. Ones that I feel almost guilty that I GET to have. Ones that I never dreamed I would be a part of. She has brought so much PURE goodness to our world. So many wonderful people and friendships have been founded in the roots of Down syndrome and having Hazel in our lives. 5 years of these roots growing deeper and deeper into my soul. It's gotta a grip on me now, nice and snug. This grip gives me comfort. 

Even the really hard, ugly truths that sweep us up and leave us vulnerable. Things that I share with people make me feel blessed and honoured to be on this path. When someone cries with me, shares with me, hands me their new baby, or I simply get to experience a family come together to support and love one another something fierce - that's Hazel feeding me, giving me life. The roots grow deeper, stronger.

I am grateful for all of it.  

And yes over the last year of her life, I had to send an almost 5 year old to JK with a diaper bag. For like 5 minutes, I had a pity party about that. Poor her, she's different. Poor me, I have an almost 5 year old in diapers still. The roots tighten. Also, I notice the gap between her and her same age friends expanding the older she gets. School has made that a more of a clear difference, which has me all, "if it's like this now, how will it be in another year or 5 or 10?" Sometimes I have a pity party about that too. The roots tighten. Then when she gets sick I worry so incredibly much that I am missing something because she can't tell me what she's feeling. Matt and I have to rely on our gut. We have to really KNOW our girl. How easily can something be missed? New shoots grow.

Am I including her enough? Roots.

Do I expect enough? Tighten. 

Do I give her the right vitamins? Roots.

Do I treat her fairly? Do I give her a pass? Do I hold her to the same equal standard as her sister? Roots. Tighten. ROOTS!!!!

I can't breathe. Sometimes the roots of Down syndrome suffocate me.

Sometimes I wonder if I do the exact thing that enrages me when other people do it - Blame the extra chromosome. Gosh, I hope I don't. But I dunno. I remember at the beginning of the school year, Hazel had a field trip that was on the bus. Well, she had never been on the bus. I was convinced that it was a disaster waiting to happen. I offered to be the parent volunteer for the day. I am pretty sure the teacher was kind enough to understand that I was freaking out just a tad and chose me to be one of the parents to come along. When it came time to leave, I was just about to grab Hazel and throw her in my car. Meet them there. Cause there was no way she was going to understand the "rules of the bus ride." For example, stay sitting in your seat or even STAY IN YOUR SEAT. The teachers (and other parents) though - they didn't think twice. Hazel was going to go on the bus like everyone else and she was going to do fine. It took me a minute and some serious self reflection but I let myself hear them and decided to head for the bus, Hazel in tow.

And you know what???

She rocked it!!! Sat, sang, smiled, looked out the window. She LOVED it!!! And she knew just what to do. I may have let he sit with her EA for fear that she wouldn't actually listen to me but, hey - she did it. Point is the team at the school was 100% confident that she was capable even when I wasn't, they INCLUDED her when I didn't. At that moment I realized, I can't sit here and advocate for inclusion if I don't do the including myself. Thank you teachers and other parents that were so confident in Hazel when I just couldn't see it. Since that day Hazel has been putting me in my place. She learning, growing and proving every single day that she is capable and deserving of a spot in that fully included classroom.

You see this Down syndrome thing is growing with me. I am growing alongside of it. I don't have it all figured out. I hardly have any of it figured out. I don't know all the answers. Actually, I know very few of the answers. To tell you the truth I still really don't like looking too far ahead. I just don't like the uncertainty that lies in the future. I have a constant mantra running in my head to "STAY PRESENT" in order to not worry about something that may never be part of our world. And maybe I'm not doing anybody any favours by sitting in this comfortable, cushy place that I have created for us but I will tell you, that I am continuing to grow. I am continuing to provide a space for the roots and give them a place to flourish and be nurtured. I am growing as Hazel grows. The older she gets the more harmony that exists in the root system. I realize exactly which roots need to be nourished and which need to be pinched off because they are threatening to kill the whole system. I'm learning not to give energy to something that doesn't serve our greater good.

As a mother and an advocate for those with Down syndrome, I do realize that Down syndrome is only a part of what makes Hazel who she is. It doesn't define her, nor is she just like the rest of her friends who have Down syndrome. It's just that when I look back at our lives before Hazel, before Down syndrome - I don't recognize it. We have new friends, new family, different priorities, a new mission, different places to hang out. We've shifted and maneuvered around learning how to accept and love everyone for who they are. And I mean REALLY LOVE and REALLY ACCEPT. While I can sit here and attribute that to Hazel or her making me a mother, I have to give credit where credit is due. For the past 5 years, Down syndrome has enriched our lives, expanded our bubble, it's been the light at the end of the tunnel.

Granted Hazel is that light. She is pure, honest and sweet. That just IS Hazel, not because she has Down syndrome. I do strongly believe that hidden within the seed of this tiny extra chromosome is a certain wisdom, love and light. There is HOPE and FIGHT and DRIVE. There is a WORTHINESS, a CAPABILITY, a DETERMINATION. Most importantly there is something for the rest of us to learn. A lesson that's entirely different for everybody, for each individual person, who has nurtured this seed and provided a space for its roots to grow. 

So you see, Hazel will of course always be Hazel first. THAT part of her will ALWAYS come first. She will always be her lovely, unique self and will be celebrated everyday in our home as one of our children. She will also always have this little part of her who has had such a profound impact on all of our lives. Down syndrome. Sometimes it's a silent part, and sometimes it demands a little more attention. All I know for sure is that the last 5 years have been both challenging and full of joy. They have gifted us way more than they have taken. We have laughed more than we have cried. We have been more healthy than we have been sick. We have absolutely maxed out the scales on the amount that we have LOVED. And all of it is because Hazel chose us to be her parents. I'm not quite sure I could ever be even half the person I am today without her guiding me, teaching me, leading me, feeding me and nurturing the roots that hug my soul so very tight.

LOVE has never been enough of a word for the way I feel about you baby girl, but I guess it will have to do. Happy 6th year sweet, sweet Hazel - I do LOVE you so entirely that it hurts in the best possible way. Looking forward to what treasures will lie ahead, Haze. 

I got super lucky this year and was able to get a couple of pics from the very moment she turned 5. 9:55 am.

 

 

 

 

 

 

New Habits...2017

This pic here is the very first sunrise of the very first day in the brand new year - 2017. I wish I could say my mental state was at it's best when I caught this beauty but truth was we were up with Hazel starting at 4:30 in the morning. I was so annoyed and tired and just UGHHHHHHHHHH - ya know? And then this happened. And for like a solid 15 minutes my horns retracted and all I could feel was...

GRATITUDE.

To be able to begin a new year with a new sunrise of this magnitude was indeed a gift, a sign of good things to come, a blank slate before us. I have never been as excited to start fresh in any other years prior. And then the rest of the day was a S@&T show. But there was that. 

We are into the new year already. It's always crazy to think about the time passing. It all just happens right under our noses. Myself, I know it's happening because there is a new beginning each morning and a huge sigh of relief every night when I crawl back into bed. That sigh signifying another day done. Add it to the overall tally. All of a sudden it's almost the end, of the first month, of the new year - 2017 is rollin'. 

Well then...2017. Let's do it!!!

I have been quiet here because for me a new year is all about creating some new habits. Not resolutions so much but making the changes that lacked the year before. Changes for our family, for just the girls, for myself, for the community and for overall health and wellness. I've been taking a look at some of the things that need to be added to our daily routines to increase our quality of life. These things don't just come easy to me nor do they come overnight, so I have been letting it all rattle around in my brain for the last month.

Things pop into my head and I, literally, have to write it down because even though I feel so strongly about the changes, they aren't quite a habit yet. I need the daily reminder. I have been really trying to wrap my head around the practicality of having a busy lifestyle AND having the time/energy to make these changes attainable. I have not yet come up with a solution for this attainability, but that's what this last month has been about. 

Setting the TARGETS.

Now for the next bit, it's about the METHOD - how am I going to make this all happen? 

And finally, hopefully, making these changes a HABIT

Overall, making lifestyle changes that stick with us. The goal is to create new habits that come as second nature. I mean, some things may not stick. That's totally fine but I would rather walk away from 2017 with 3 GREAT new habits than nothing at all. 

This is me. The very beginning of 2017 version of me. HEEEEYYYYYYY!!!!

Can't wait to see what 2017 brings to these 5 ladies. It's an honour to watch them grow together. 

Family selfie 2016 - at one of our most favourite places. 

Christmas Festivities

Sorry I am not feeling the writing vibe today. Might have something to do with the million pics I just uploaded and saved and posted here. I'm spent...

Hope you all felt love from somewhere this holiday season.

Christmas Eve...

Christmas morning...Santa CAME!!!!!!

Who knew the joy this harmonica would bring??? BEST gift ever!!!!

A little Chritmas magic for mommy...

This is what they are like 50% of the time. Poor Hazel.

Christmas Day...

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We literally have zero pics from the big old Italian Christmas but there's this...

This is us. Christmas 2016...

Merry Christmas of 2016

Here we are once again. About to shut it all down and just let it unfold. We prepare. We cook (well some of us cook), we shop, we bake (well some of us bake), we stress about making sure everything is perfect, we decorate, we craft, we watch Christmas movies, we sing and dance. When the time comes we settle in and just let it all happen.

This year I got to watch that little ball of magic that lives inside children take shape in the girls. This year they were excited to see the lights, the Christmas decorations, and even to visit Santa. As any of you know that have been with us a while, my girls have not had a great rapport with Santa over the years.

This year they were the perfect amount of hesitant. A little nervous but nothing they couldn't overcome with a few quiet minutes to really let it all sink in. They were so EXCITED to meet Santa this year. Lots of pointing and high fives. Nola wouldn't sit on his lap but hey, I get that. I respect it. When we left him she was so happy. Right before she went through the door she turned and said, "Merry Christmas Santa" in her most excited and thankful voice ever. I am alive to tell about it, but just barely I assure you. Hazel kept looking at him and waving. Flashing her million dollar smile. The smile that renders you helpless, you fall in love with her. It's her superpower. Like you know how vampires can 'compel' people to act, well she can compel people to LOVE, just by flashing them that sweet smile. I think this might be my cue to stop binge watching The Vampire Diaries. I digress...

It is such an honour to get to be a parent. We get to live the magic through them, lead them to it and watch it grow into belief and joy. Yeah, sure, parenting is also changing the sheets cause your kid was sick on them last night, and on you. It's about staying up nights on end to make sure they sleep well. Tis the season after all. The season for celebrating but also for nursing back to health. Maybe having both the very hardest moments of parenting juxtaposed with the very rewarding moments of parenting makes the reward taste that much sweeter. All I can say at the moment, as I sit here in the total quiet, I am choosing to feed the magic. Let's see just how big we can make it grow.

These two gals have a way of feeding the magic that lives inside me as well...

Wishing you all a peaceful holiday season celebrating (or not celebrating) in exactly the way you feel is right. Whether surrounded by family and friends or alone, I wish you joy, love and health. 

Merry Christmas Chasing Hazel fam!!!!!

A Day In the Life - Tarantino Style

So the other day we had to be at a high school about 30 min away from where we live for a play session that the high school students were responsible for setting up and managing.

The Tarantino version of the story is we made it.

All was well and the kids had a BLAST!! The students did an amazing job at planning age appropriate activities for the 4 children present. They created a very welcoming, calm environment where the kids felt very comfortable. WELL DONE!!! Even Hazel had a great time and she's a tough critic. 

The rest of the story goes something like this - And I guess I should say that this was a couple days ago now because I really didn't find humour in the situation at ALL at the time. I still don't but I'm a realist so here you have it...

Nola decided that this particular day she was going to be extra pokey getting her sweet butt out the door. We finally get out the door and have to go pick up Hazel from school. I debate for about 30 seconds on getting the kids fries cause ya know - try to keep em' happy and content before we have any expectations of them. I pulled in, waited, and then left with NOTHING, cause apparently everyone and their brother need fries at 11:15 in the morning. ANYWAY.... #notjudging #iwasinlinetoo

Needless to say we are running late, emotions were at an all time high, stress levels were elevated, and I am doing my very best to not be SUPER late. 

It's at this point I turn around and see that Nola is chewing on the freezer pack she took out of Hazel's lunch pail. When I say chewing I mean gnawing, with purpose. Trying at all costs to put a hole in that plastic so that she can get a taste of what's on the inside. 

I FREAKED - LIKE FREEEEEEEEEEEEEEAAAAKKKKKKKKed!!!!!!!!!

Naturally, I yelled at her to hand over the bag immediately so I could see if she had indeed succeeded in her mission and made a hole in the bag. In that very panicky mom tone I yell - NOLA!!!! DID YOU EAT SOMETHING OUT OF THAT BAG????? 

Nola: Blank stare 

Me: DID YOU EAT SOMETHING OUT OF THAT BAG???? NOLA!!!!!! ANSWER ME!!!!!!!! DID YOU??!!!

Nola: Blank stare

Me: OMGOSH NOLA!!!!!! HAND ME THAT BAG RIGHT NOW!!!! I NEED TO SEE IF YOU PUT A HOLE IN IT. GIVE IT TO ME NOW!!!!!

Nola: No words, throws the bag on the side of the car seat that is literally the furthest away from me as humanly possible - BLANK, TAUNTING STARE.

Oh - I did mention I was driving right?!

ME (to my friend on the phone - oh yes I had a friend on speaker phone the ENTIRE time): OK so I might have to take Nola to the hospital.  Tell the high school students to carry on without us. WHAT IS MY ACTUAL LIFE?!!!!! I HAVE NEVER BEEN MORE MAD!!! (my friend stays on the phone for the verdict)

I pull over when it was safe, cause you see, I was driving on a highway(ish). I leap out of the car, find the freezer bag and inspect every inch. 

NO FREAKING HOLE!!!!! 

I think I probably gave the most effective "arresting bitch face" on the planet, got back in the car and started driving. Gave my friend our ETA, and assured her Nola had NOT ingested poison. I have NEVER been more mad at a human being in my life. Her blatant disregard for my requests never ceases to amaze. Everything I say to her is a suggestion and she gives me this look like, 'I'll take that under advisement' mom. YIKES!!!!! 

Anyway...no hole meant no emergency trip to the ER and we managed to make it to the play group about 10 minutes late. We do like to make an entrance. 

And there you have it. Just one day in the life of Nola Charlie. There is NEVER a dull moment.

 

 

 

 

St. Clair College Down Syndrome Play Group

If you have been following Chasing Hazel for any length of time, you may have seen that I have been doing guest lectures at the College for a couple years now. I am often invited, by my super awesome friend, Kathryn, to speak about our lives, our kids and what the diagnosis of Down syndrome may mean to families. These lectures are delivered to future teachers, and early childhood educators. They are just about to begin a career where they devote the next 30 or so years to children of all different abilities. 

Often, I go in with the message of inclusion and the importance of high expectations. I talk a great deal about being compassionate. I explain how Hazel is the same as all other children. I explain how she is different - And how that is ok. Different is not scary, it’s just that different. And EVERY. SINGLE. TIME. I am looking around the room and I just know - I can FEEL - that they already get it. They LOVE Hazel, they understand her, and me. They already have compassion pouring out of their hearts. They WANT her. They ACCEPT her. They’ve already made the commitment to educating whoever walks through the doors of their classroom. I’m preaching to the choir, so to speak.

Anyway - What I am trying to say is, this relationship has lead to a SUPER cool opportunity to do something pretty amazing for our DS community here in Windsor.

WE ARE STARTING A PLAY GROUP!!!!!

And we are opening the doors to all those in the DS community that have children from ages 0-10 (or 12 we haven’t decided yet - LOL) I am so excited I can barely stand it!!!!!

Our goal with this play group is to provide a family friendly environment for children and families to get together and play, bond, connect and discuss. We want to make it as convenient and EASY for families as possible. So we decided - Brothers and sisters are welcome too! A place the whole family can go to hang with their kids, simply observe them playing in the group or step away to another room to sit and enjoy the company of other parents. It was also important to us to provide an inclusive environment so opening this up to siblings just made sense to us. 

The child care space is fully equipped with a brand new preschool room filled to the brim with everything and anything a child would need to keep busy with their friends. They have crafts, sensory activities, lots of centre for imaginary play, manipulative and a super SUPER awesome Snoezelen room. It’s the perfect place!! We will do our best to provide snacks for each session. 

And HONESTLY GUYS!!!! The very best part of it all is…wait for it…

There will be a team of qualified, trusted Concurrent Education or Early Childhood Education students developing programming, activities and some guided play opportunities for all the children who attend each session. 

We had one opportunity to do a pilot session for this play group and it was fantastic!!! We were able to sit and connect as parents, while the kids were in the best hands playing and having a blast. This group is a work in progress and it is at the very beginning stages. Over time we hope to be able to build, expand, grow and have more specific goals. For now we are working with parents to see what it is that they want, and what will work for their families. 

This is all offered to parents at NO CHARGE (aside from the fee for parking). 

Of course we have future goals and hopes. Some of which include the possibility of seminars, presenters, integrating therapies but mostly for now we just want to….

Let it GROW!

We want to be a resource to new and existing families in our community. We want to be a safe place we can play, learn and just BE

I will leave you with this…

Our very first night piloting this play group changed me forever. We were able welcome a new mother to the Down syndrome community. A mother who had previously not known that there was even a DS community that existed. A room full of people who fussed and loved on her new little 5 month old baby boy. An experience that this particular mother had never had with her new baby boy. I held her in my arms as we cried together. To be honest I think mostly her tears were of relief and hope. She said she felt so much peace knowing she wasn’t alone. Some of the tears were indeed because she was scared and confused, which brought me back to my days of fear and worry. There we were connecting. Crying. Growing.

There is no doubt in my mind that this play group’s purpose is to connect families. And on the very first night of it’s existence we were able to make such a profound impact on an entire family. More importantly, I was reminded that in the end all we need to do is show up. Being a part of the Down syndrome community both on-line and in our local community has given me more peace that I could even try to put into words. I was so incredibly grateful to be able to give that feeling to another mother. 

This play group is going to be a gateway to changing lives. Everyone’s. Mine, new mothers, our children with DS and without, child care providers, teachers…EVERYONE!

SO I SAY LET IT GROW!!! (The Lorax)

These Gals...

I know I have gushed about the girls several times here in the past. I also know that I have been very real here about the girls as well. The good, the bad and the ugly (or so they say). However, every now and again the girls go through a phase that makes all those 'ugly' times so worth it. Embracing these moments must be how we survive. Realizing these moments are happening is how we stay present. We appreciate them and we know we are at a peak. 

Lately, every single day when Hazel gets home from school, they giggle as one starts running towards our bedroom. Somehow, the other knows EXACTLY where they are supposed to be headed. Immediately they get up to start running and giggling with who ever started it that time. And the pitter-patter of their feet and the giggling is enough to make me stop whatever I am doing and follow along with them. Laughing right behind them. I have turned the stove down many-a-time in order to follow them in this moment. 

When I get into the room they are always on the bed. It's the activity of choice that is different every time. They could be jumping. They could be singing. They could be laughing. They could be jumping AND signing AND laughing. I call that the "how-long-can-I-let-this-go-before-I-am-risking-an-injury" move. They may be counting to 3, then falling, then laughing. I like to call this the "its-all-fun-and-games" move.

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AND SOMETIMES, just sometimes they may even be laying or sitting, hugging and staring into each others eyes. Saying things like, "I love you" or "I'm proud of you" or any other magical phrase you can think of. I start to feel my heart fluttering and my eyes turn into hearts. I like to call this one the, "we-are-trying-to-make-mommy-give-us-another-baby" move. For 30 seconds I am fully on board with this 3rd baby idea. Until the hugging becomes squeezing, the caressing becomes pinching, the kind words become, "STOP" or "DON'T TOUCH ME" and I'm confident that 2 little girls can be enough.

These ladies have been good for the soul lately. They are adding just enough spirit and magic to the upcoming season to turn even the Grinchiest of Grinch's into a Carol Singing Elf. As I age my faith grows stronger and stronger. Maybe it's the simple fact that I am getting older. Maybe it's because the more life experience I gain, the more I can see God's hand in everything - A sunset, sunrise, a kind gesture, a smile, a sweet child in Hazel's class. I see the beauty and the greatness in all of it. I appreciate it. I respect it. Most importantly, I know I am NOT entitled to it. This greatness is a gift and I have gratitude for all that I am given. 

I have been stumbling on them sitting and leaning on each other almost daily. Nothing is ever so clear to me in that moment than God's presence in our lives. These 2 were hand crafted for each other. Destined to be together. They likely have been to together many lifetimes before this one and will be for many after (if you believe in that kinda thing). This is love. REAL, fairy tale, true LOVE.

If they were all I had in the entire world (their daddy included) - nothing else at all - I would feel like I was given too much. And to think I have so much more. Feeling all the gratitude today folks.

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Heading into this Holiday season ready to share love and spread joy.

Frankenmuth, MI

Last week we were gifted the very coveted gift of family time. On a whim, we hopped in the car and drove a couple hours north to a magical place called, Frankenmuth, MI. The whim being the operative word. We all know the best laid plans...blah. Turned out it was a really REALLY great idea. We had the BEST day!!! So much fun!!!

The weather was perfect. It happened to be the very last warm, sunny, cozy day of the season. Thee most perfect day for running around and exploring a cute little town, with cute little shops, yummy restaurants, super fun parks and streets lined and FILLED with Christmas lights and decorations. We all came home with the a little more Christmas spirit, ready and looking forward to the upcoming holiday season.

Little did I know at the time, that that little trip we took on Friday would set the tone for the best weekend we had in a while. Lots of hanging out at home, playing together, singing, dancing, shopping, cleaning, organizing and just overall life. We got to LIVE TOGETHER. Be together. 

Truth is, most of the time, parenting is hard. It's ugly. Even though we are home a lot with our kids, we don't often spend the kind of time together where we are all happy, content, and present. There are so many things that distract us these days. It was lovely to be able to focus all our energy on just living with the kids. No agenda. Just us. Present. 

This was taken directly from my IG page...

The thing I find about parenting, is the lack of 'quality' time you ACTUALLY spend with your kids. It's like an illusion that once you have the kids, every second you spend with them is going to be grand. Truth is, when I have time to sit and play with them, they want nothing to do with me. When they want to play with me, my attention needs to be spent elsewhere- cooking, cleaning, hiding 😬 But every now and again all the stars align and the illusion becomes very real. This weekend the stars did not disappoint. We lived the illusion 💫🌟🌖🌟💫 And most of it was spent right at home 🏡✨

Official Apple Holiday 2016

Yeah so what if this was like over 2 months ago - SO what???!!!!

I am posting now. SO that's that!! Plus it was like super warm up until last week so it didn't feel much like fall or apple picking so I held on to this for a while just until it was cool enough out to feel 'season appropriate' to post. Then all of a sudden, it was like winter so - I don't know - have it now!!!

If you've been "Chasing Hazel" for a while now, you know that every year we get the cousins together and go apple picking. You will also know that this is my MOST FAVOURITE family tradition ever!!! We walk, we run, we talk, we eat apples, we try to take the most perfect pics ever, we laugh. It's SO MUCH FUN!!!! This year we adding sweating to our list. A LOT of sweat!! Usually, we have our sweaters, boots and scarves. This year we has on shorts, dresses, tanks and we still sweat. A LOT!!! I feel like I said that already??!! SO hot!!!

Neither of the girls really love to be warm so it definitely made for an interesting experience. Hazel started collecting apples and then she just walked over to the wagon, threw everything out and sat down. Then demanded water and chips. We did manage to get her back out again but she was pretty volatile. So aside from ALL. THE. SWEAT. We had a great time.

Love this day. Love hanging with some of my fav peeps. Love being outside watching it all just happen. And this year I especially LOOOOOOOVED the very cold beer we had immediately after our apple bags were full. 

This day has officially become a holiday in our family. Love it all!!!

Nola's 3

I am actually not at all sure how we have gotten to the point where we no longer have any babies living under our roof??? And I'm not talking about the fact that time passes all to quickly, my babies are all grown...blah blah. I'm ACTUALLY unsure how we LITERALLY survived? Are my children the only carnivores around?? Eat you alive, spit you back out and then mama bird what's left of you to the other one. I kid...Or do !?

Strangely enough I wouldn't change it for the world. Or would I? I kid...

Nola is 3.

I'm pretty used to her not being a baby actually since that stage lasted about 6 months. Since then she's been telling me how it is and, quite honestly, I just let her cause - "ain't nobody got time for that." This child can literally both simultaneously be the light, love and laughter of the home AS WELL AS the rage, anger and "oh-Lord-please-send-me-help-strength-serenity-and-wine" of the house as well.

No but seriously, she is funny almost all the time - a solid 95% of the time. Sometimes she is intentional with her humour and sometimes it's just the innocent comments that she makes on a daily basis. Once this girl hears something once, she files it in the, "I'm-gonna-pull-this-out-when-it-makes-my-parents-look-like-total-failures" part of her brain and she always nails the delivery. Usually we just laugh along side her, further ensuring the #failureparenting status. BUT SHE'S JUST SO FUNNY!!!!

A few of her favourite things are HAZEL!!!! Hazel and Hazel. Did I mention Hazel. When we pick her up from school she can barely contain herself. The second she sees her she runs to her, open arms and they hug so tight. Then she runs off and fulfills her own agenda, usually playing on the school playground, running away from me and basically doing whatever she wants at all times. She's not herself at home or at preschool these days, she's too lost without her sister around. 

Her favourite movie is Secret Life Of Pets, and any princess movie, with Horton Hears A Who close behind. Songs are The Hum (still), Fatboy Slim, "Praise You" and any princess song. She wears about 3-5 different dress-up dresses every single day. She picks out all her own outfits and gets really mad if I try to skip this step and just put her clothes on. Shoes - Forget it!! She's the most picky person ever. They have to look right, and feel right for her to wear them. She loves to paint, cut, write, have tea parties, pretend to make coffee, help me in the kitchen, be outside, go for walks. She loves to spend time with real live babies (who she usually tries to breast feed - no joke), her friends, and her cousins. 

Nola is an extremely challenging child to raise. Always testing the limits, wanting everything the exact way she wants it. She is far beyond her years in the scamming and working the system department. She knows that if Matt says no then she just comes to ask me. When I say no she wants to talk to her Nonna or Nana. The struggle is real. She's working on her negotiating skills and they are already on point. Good thing one of our mottos in this house is to, "not negotiate with terrorists." Most of the time she asks and receives cause I can't think of an argument that makes sense against hers. And most of the time I really don't care to argue about the small stuff. We have enough battles to fight teaching the girls to fundamentally good people so I tend to stick to those battles. 

Honestly, she is pretty amazing. She literally keeps the energy level up every single day in our home. She's always excited, or ready to be excited about just about anything. She's full of light, love and positivity. She loves to do everything! She loves to receive ANY gift - ANYTHING!!! She loves when ANYONE comes to visit! She tells us all she's proud of us all the time. She cheers so BIG and so LOUD for anything Hazel accomplishes, even if it's something she can already do. She's the kind of kid that wants to experience everything life has to offer her. She doesn't let any opportunity pass her by (even if it's naughty).

Her zest for life and her curiosity for the world is totally contagious. I want to go places with her, show her things, hold her hand (if she lets me, which is like, never). I want to watch her little mind be blown, her heart explode and her mind expand with each life experience she logs on her "childhood memories" meter. This year we decided that instead of a 'gift' gift that we would have her favourite princess come to the house and spend an hour with her. It was magic!!! Like pure joy and happiness for every single person regardless of their age.

We all got totally sucked into the moment watching Nola's little face light up with love and belief that Sleeping Beauty was real and was there to sing and dance with her. I think all our hearts were bursting with happiness and joy as we watched them sing and twirl around the living room together. I am telling you it was absolute MAGIC!! I could actually see this leaving a permanent mark on her soul. Maybe she doesn't remember it super clearly when she's older but it did leave a mark. It will present itself somehow in her heart as she grows. I know when she's way older, she'll come across a photo of this moment, hear a song, see a little girl wearing a princess dress, and her heart will feel all warm and fuzzy. She will remember. She will feel love. She will have a desire for magic.

And we do LOVE her so very much. Love seem like an understatement actually. There is not a child out there who gets more kisses, hugs, or snuggles than Nola. She's a very affectionate little lady. As the calendar pages keep turning, my hope is that we can provide her with experiences in life that satisfy her love of all things, we can teach her to be a compassionate human being and guide her to a life that is full of all the joy and happiness a person could ask for. While not ignoring the hard, sad times that are inevitable. For those we will be there to support her and watch them turn her into the person she is becoming. In the meantime, I plan to hug her and kiss her A LOT! Cause time is a jerk and it's taking away my babies. 

Happy 3rd Birthday sweet, smart, funny, loving, beautiful NOLA!!!! xo

My children were both kind enough to be born during the daytime hours so now for the rest of their lives I can take a picture of them (or 10) at the exact moment they start their next year of life. 

This is Nola on November 9th, 2016 at 11:02 am...

CDSW Day 6 - Daniel

Daniel is 15 months old and is an absolute pleasure to see pop up in my feed. Look at this kids face - LIKE LOOK AT IT!!!!!!

I actually CAN NOT!!!

 He and his sister, Savannah, are quite the duo. Although we have sadly never met in person. I am sure we are bound to one day in the future. I am so glad this little man and his family are in the Lucky 21 Club!!!

Ashley, Daniel's mom, shares with us...

How was your pregnancy?  

My pregnancy was no different than my first. I had all the usual aches and pains. All of the routine tests came back negative so we had no idea the gift that was headed our way.  Delivery was a breeze- I slept through my entire labor and then woke up moments before he was born- everything happened so fast.

When did you receive your diagnosis?

It was a couple hours after Daniel was born when I first found out that he may have Down syndrome. I was alone in the room waiting for my husband to bring our daughter to meet her new baby brother. I had complications with my epidural and was paralyzed from my waist down and waiting to head down for a CT. I was across the room from Daniel when a doctor came in to have a look at him- I was already shaken up from the news that they were unsure if I would gain all feeling back in my legs so I admit that had my full attention.. Until I heard them whispering about his eyes, and his hands. I remember the doctor whispering to his student about the placement of his ears and the tone of his little body. I suddenly couldn't feel my face now either.  The doctor looked over at me and said quickly "we suspect he has Down syndrome, we are going to send somebody in for blood work." Then before I could even reply- he was gone, and I was alone and a world apart from my son.  I felt like I was dreaming. I had so many questions, "how?" and "why?" were the biggest. I had never even met somebody with Down syndrome before. I was in such a panic.

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

I was in complete disbelief, I felt a lot of sadness and fear. I didn't sleep at all that night. I grieved the child I thought we were having and had a hard time accepting that things were going to change. I was in no way prepared for the life I thought we were going to have. I remember looking at all his tiny little features and trying to compare them to his sister. I kept saying "I don't see it" and asking others if they "see it?" For three weeks we (my husband and I) took turns with this. We obsessed over it and I felt so guilty because it really didn't matter- We were already in love. We worried what this meant for his sister and if she would have a chance at a normal childhood/life and how his diagnosis would change our lives. We were especially scared for his health. Looking back now I wish I could tell that mess of a woman in that hospital bed that "I do see it, and he's perfect." I wish I could tell her to stop crying tears of grief and be grateful for this tiny life God had chosen me to care for. I wish I could go back and tell her to just take things one day at a time, go at Daniel's pace and stop researching every little tiny thing that could go wrong - But most of all I wish I could tell her that Daniel is going to bring so much love and so much happiness into our home and that things are going to change but in the absolute best of ways. It's all going to be alright, Ashley.  

What has your child with Down syndrome taught you?  

Daniel has taught me that I have strength I didn't know I had.  

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

I wish the world knew that Down syndrome is nothing to be "sorry" for. My son is wanted and adored. He is a valuable member of our family and we would not be complete without him.

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

My hopes and dreams for Daniel are no different than the hopes and dreams I have for my daughter. I hope my children have a very fun and memorable childhood. I hope they grow to be confident and respectable adults. I hope they find something they enjoy doing and become very good at it. I hope they find purpose and meaning in life but above all else I hope they are happy, and are happy with who they have become.

CDSW Day 6 - Aksel

This here, is Aksel. He is the whole package; smart, loving, handsome. The kid has it all. Hazel and Aksel are the same age, so I have had the pleasure of watching them play and grow together over the last 4 years. Oh and he also gives the BEST HUGS ON THE PLANET!!!!

Elizabeth, Aksel's mom, has blessed me with her friendship as well. It would not be uncommon for me to text her with a question about Down syndrome, reading tips, potty training, healthy meal ideas, anything that I'm confused about really. HA! We laugh all the time cause we are so entirely different but yet, we respect each other deeply for being who we are. Often, her opinion allows me to see something that I would never have thought on my own but makes perfect sense. I truly value her for all the ways she chooses to raise her son, for all the things that make us different and for all the guidance she has given me to this point. Also, I'm a tad obsessed with Hazel and Aksel #allthehearteyes

Elizabeth shares this with us...

Meet Aksel.
He's four years old.
He's bilingual (English and Finnish), and learning French.
He’s reading at third grade level.
He loves drumming, swimming, gymnastics, climbing,
... and did I mention reading? He LOVES reading.
He loves puzzles.
He loves animals.
He likes to jump from high places.
He goes to school at the local Montessori – fully included, and independent.
He's a great traveler.
He loves to learn.
He's healthy.
He's smart.
He's silly.
He's empathetic.
He's loving.
His smile is contagious.
He laughs with his whole body.
He loves kisses and hugs.
He's a perfect little boy.
Xoxo Mom & Dad

You can find Aksel on Instagram at @allstar.aksel - You are going to want to head over there and follow OBVI!!!

Tell me you are not totally in awe of this kid's skills!!!!! What did I say? He's got it all!!!

Thanks for sharing Aksel with us today!!!!  

CDSW Day 5 - Claire

Meet Claire. She's going to be 10 months old soon. Isn't she amazing??!!

While I have never met her in person, I have had many conversations with her family over Facebook. I am always so excited when a new family joins the Lucky 21 Club!!! Even more excited when parents trust me enough to reach out or let me share their babes here with all of you. This little lamb has been such a fighter overcoming all kinds of odds since she's been born. Her parents Jamie and Jaime have been by her side, supporting her, loving her and doing all the things that parents do. Claire's heart surgery is in the past and she is growing and thriving. Such a darling!!! 

Thanks so much for sharing your sweet babe here for CDSW...

From Jaime & Jamie...

My pregnancy was healthy, uneventful, & full-term. Ultrasounds didn't show anything concerning and so we assumed all was well. As a result, Claire being born with Down Syndrome was quite the shock. She also had a heart defect that would require surgery at 5 months of age and she needed a feeding tube to help her gain weight.

Initially, we grieved what we had lost in terms of our expectations and hopes for the future. But Claire has proven to us every day that we shouldn't put limits on her. We shouldn't assume she "can't" or "won't" do anything. She is developing and thriving just like any other baby. At 10 months, she rolls over, sits on her own, babbles, signs, says her version of "mama" and "dada", and is working on crawling, kneeling, and standing. She is so CURIOUS and must check out everything around her. She is determined and works and works until she figures something out. Claire has the most beautiful smile that lights up the room and makes everyone smile back.

We wish people (including our past selves) knew how awesome Down syndrome can be. That it isn't a scary or sad or disappointing diagnosis. Sure, there are risks for other health challenges, but you take things one day a time and treat issues as they arise, just like you would for any other child. We have extra appointments, but we learn so much from our occupational therapist, physical therapist, speech-language therapist, dietician, and chiropractor.

To borrow from Tara's Happy Soul Project, we wish for Claire to be a "happy soul". That's it. Sure, we hope for good health, friendships, success in school, hobbies, athletic interests, a career. But most importantly - that she's happy.

We have found it really helpful to connect with other families of kiddos with Down Syndrome. There are opportunities now to connect with people all over the world through Facebook groups.

LOVE THIS FAMILY PHOTO!!!!! Thank you so much for sharing Claire here on Chasing Hazel. 

In a recent message with Jamie, he explained to me that this pic was taken on their family vacation. They travelled all over the West Coast. He shared with me his wonderful outlook on parenting. He said that he wasn't sure how traveling was going to look with a new baby but that he felt it was important to adapt to each new situation and try to stay as positive as you can. 

Really beautiful!!! Claire is lucky to have you both!!! 

CDSW Day 4 - Livy Lou

Meet this sweet little nugget Livia...

You can find her mom on Instagram @apeeamlin

Livia's mom (and bestie..hehe) April, was kind enough to share her sweet little lady here with us for CDSW. Livia is 8 months old and literally makes my heart swell every single time I see her face pop up in my feed. I had the pleasure of meeting this little love once when she was 3 months old. I swear I wanted to grab her and run - and I may or may not have told April and Jack that - LOL!!! #nobutseriously

Since I've met little Liv, she has had open heart surgery and is on the road to recovery. Having walked that path with Hazel we were all too familiar with what this family was going through. Turns out Liv is a total rock star and crushed her surgery and recovery time. She is continuing to grow, thrive and meet her milestones. Such incredible strength!!! Welcome to the Heart Warrior Club Liv!!! 


A message from April...
 

I had a very normal pregnancy to begin with, nothing out of the ordinary. We opted out of the IPS screening as we knew it wouldn't change our decision on our baby's future (best decision we could have made in hind site for our family, we would have experienced unnecessary stress and fear, it was so much better to find out with a beautiful baby in our arms). When I was 30 weeks I was measuring small, after many ultrasounds it was decided that she was growth restricted and therefore they would keep a close eye on her (movement, fluid, heart rate, etc) and possibly induce me early. They could not be certain what the cause of the intrauterine growth restriction was until she was born. She came at 34 weeks but the size of a 30 week baby, 3lbs, 4oz.

The best day of our lives by far, she was breathtaking. We learnt about her heart defect the day after she was born. Dr. Adie did a bedside Echo, because of a murmur he had heard. They originally were not going to send genetic testing, since they did not see any signs for DS on physical exam, and assumed growth restriction was a random occurrence, but because of her newly diagnosed heart defect (AVSD), which is so common with DS, they sent the test.

We received our diagnosis from Dr. Nweasi, he is the biggest sweetheart in the NICU. he reminded us that DS didn't change a thing about her. thAt it was just one part of who she is, but it does not define her. He reminded us that she was still our little princess, and a princess she is!

We were initially filled with mixed emotions, fear, sadness, 'why her', mixed with the overwhelming new love for our new baby girl. We had so much support from our family and friends and decided together that really nothing else mattered but the love we all felt for her. As long as she is loved, all else would fall into place. I started reading some blogs of other moms with children with DS which helped tremendously! I also read the book about the various health concerns with children with DS and found it very educational, but extremely overwhelming (could you imagine if every new parent got a book of all the potential health concerns any baby 'could' get, scares the crap out of you)? It was important for us to remember to focus on what health concerns she DID have that needed to be dealt with and not what she COULD have (there are many things in that book she never ended up having).

We didn't know any children close to us who had DS so our ignorance was what brought on the fear. Once I was able to educate myself, I felt so much better about her future. Now I look back and realize that I wish I knew what I know now. She is literally the best baby, I might be biased but many others agree with me, hehe. We consider ourselves so lucky, and definitely don't consider us a family you should feel bad for or pity. She has taught me that love is what's important and real in this life and she is so easy to love. We can't decide what our children will do or accomplish in the future, we can only guide them and provide them with the tools to succeed, our children with DS are the same, nothing has changed.

Things that have really helped me is reading blogs (Chasing Hazel, Happy Soul Project) or following various DS families on Instagram and seeing real life with children with DS. Through Liv's diagnosis I have been able to meet so many amazing, resilient families, they have all taught me so much about my own life and forced me to look at the world through more compassionate eyes, and the cutest lil' almond eyes ever 😀.
❤️ April, Jack and Livia Larmond

P.S. Liv's heart has been patched up and she rocked out open heart surgery, in and out of the hospital in 6 days! She rocks a proud zip-line scar and is doing great!

I am so happy to hear the April and Jack had a great birth diagnosis. What a wonderful doctor you had!!! If you want to follow along with this little love you can find her mom on Instagram @apeeamlin :)

 

CDSW Day 3 - Benjamin

Meet Benjamin. I CAN"T EVEN with this kid!!! His little face - It's too much!!! Like whaaaaaaat????

His sweet face makes me smile from ear to ear every time I see it. Kelly and I have emailed and sent messages to each other about various things that have come up over the years. It's so nice to be able to talk to someone who may have insight into what you are going through. I am honoured to have her in our space today. Her message is powerful and I hope it reaches new parents. Also, your welcome for the smile. This kid is too much!!!

Here is what Kelly wanted to share with us for CDSW...

My pregnancy with Benjamin was great!! It went smoothly just like my other two pregnancies. All ultrasounds showed a beautiful baby boy. With family waiting patiently in the waiting room and my husband by my side, my labor went perfectly. Benjamin was born on my father's birthday! :) The nurse placed him in my arms and I saw this beautiful baby boy with features just like his older brother. I remember thinking though, that his eyes looked a little different. I didn't really think much of it. I thought it was because I had just given birth and his eyes would be fine later.  

Later on in the early evening, I was moved from labor and delivery to my room and greeted by my other two children. My nurse asked my kids if they'd like to help give Benjamin a bath. While bathing him I was snapping some photos. It was that one specific picture that I took, that picture of him looking at his sister... I just knew he had Down syndrome. I sat on the bed looking at that photo in disbelief. After the nurse left, I told my husband what I thought and he didn't believe it was so. 

As the nurse returned to our room, we asked what she had thought. She indeed replied "yes that is what they are suspecting."

I just cried, I was absolutely devastated.  We didn't get much sleep that night, I wondered and worried about his health, his future, would he talk, go to the same school as his siblings or even be able to get a job. I didn't really know what to expect. I remember my husband telling me "everything is going to be ok, it is what it is. 

Over time, those tears I cried quickly turned into tears of joy.  Looking back on that moment 5 years ago I wish I could take those emotions back and replace them with hopeful ones.  My former coworker who also has a child with special needs messaged us after we had Benjamin and told us "you now have a friend for life, Ben will teach you more than you can ever teach him." I truly believe this...Benjamin is our world, he brings to our family so much joy, laughter and love. He has taught us to be more accepting, to be a little more patient and to just take one day at a time. WE have so much support from our family, friends and our local support system here in our community.  

Benjamin is going to do great things...he goes to school with his older siblings, he's learning a second language and enjoying life itself.  He's God's gift and we are so grateful that he chose our family.

We love celebrating difference! 

What a beautiful family Kelly!!! Thank you for sharing them here with us!!!

CDSW Day 2 - Vivienne

This is my buddy Viv. She actually IS as edible as she looks - SO YUMMMMMM -  So many rolls. GAHHHHHHH!!!! I WUV her!!!!

Joanna, Viv's mom, quickly became a good friend of mine after the birth of this little lady. We have had many a conversation about parenting, careers, family, and just life in general. Oh, and we also talk a lot about making the world a better place. I love that because of the extra chromosome we were brought together, when it's pretty likely that we may have never met otherwise. It's just one of the magical parts of Down syndrome. It opens you up to a whole new community that you didn't know existed. People who appreciate and respect difference just as you do. Joanna has done a really lovely job for Down Syndrome Awareness Month advocating and educating for those with DS. I am proud to stand with her and can't wait to watch our kids grow together.

Here is what Joanna had to share with us for CDSW...

How was your pregnancy?

My pregnancy with Vivienne was great. Besides some sciatica and carpal tunnel, I felt great and both baby and me were happy and healthy throughout. During one of my routine OB visits, the option to test for genetic disorders was brought up for my next set of scheduled blood work. I rejected this test as both my husband, Jason, and I decided this wasn’t really important to us.  Somehow, the blood work was taken anyway and at my next visit, the doctor shared with us that all was well.  (We found out after Vivi’s birth that the results showed we had a 1 in 261 chance of having a child with Down syndrome but because the blood work showed my likelihood of having a child with DS was just over the cut off number, the results were negative and that is what the doctor relayed to us).  I struggled with this afterwards as in some ways, I would have wanted to have known beforehand to avoid going through the experience I had after she was born.  

When did you receive your diagnosis?

I can’t discuss receiving Vivi’s diagnosis without crying, even today.  It was a traumatic moment in my life, one that has left a permanent scar and I wish the news had been delivered differently.  Vivienne took less than 50 minutes to enter this world – she was on a mission and nothing was going to stop her.  She was born at 10:47pm on February 19th and at the time of her birth, everything looked great.  Because it was flu season, the hospital was not allowing any visitors to the birthing unit so my husband went home to check on our two-year-old son the day after she was born.  

Shortly after he left, a doctor came into my hospital room with a student.  He introduced himself and came to look at Vivienne. I was holding my cheeky baby at the time and remember asking him if he wanted her placed in the bassinet, which he did.  As I placed her in the bassinet, he glanced her over, looked at me and said, “so you know there are markers of Down syndrome?”.  In that moment, it felt like someone literally swiped the rug from under my feet. I thought he was joking at first.  I thought, he’s confused – this can’t be happening.  My brain was racing a mile a minute and I was going back and forth between whether what he was saying was true or whether this was some horrible dream I was going to wake up from.  I started crying immediately.  I blurted out a number of questions which he answered matter-of-factly and as quickly as he came in, he was gone.  I was left all alone in that room with my baby, and I remember picking her up from that bassinet and telling her I loved her.  I loved her just the way she was. Funnily, those were my very first words to her after her birth.  But my brain was working overtime and my emotions were everywhere – I started pacing my room, pacing the hallways of the hospital, waiting for my husband to return.  I didn’t want to call him to tell him over the phone and I didn’t want to worry him by calling and telling him to get back sooner.  When he returned, I remember sharing the news with him and watching him experience the same shock I did just a mere couple hours earlier. It’s hard to recall those moments because we went on a rollercoaster of emotions thereafter…I recall the nurses giving me sleeping pills to knock me out because I couldn’t sleep from the weight of the news delivered to us earlier.  

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

It is extremely hard to narrow down our feelings and emotions at the time because both my husband and I were dealing with it in our own way, trying to process this news and yet, be supportive of each other. Trying not to freak out and yet, freaking out all at the same time. The possibility that our baby girl had Down syndrome was a complete shock.  I actually had almost no knowledge of what Down syndrome really was…I hadn’t even met anyone with Down syndrome before Vivi.   Her life kept flashing before my eyes, almost as if it were being erased. I was afraid – afraid of what the diagnosis meant for her, for her brother, for us as her parents, how it would affect her, her future and our family.  As we Googled our daughter’s diagnosis in that hospital room, we were terrified.  As we waited for the results of her karyotype (the blood work that tests for Trisomy 21), we kept going back and forth whether we thought she actually had ‘it’.  Once it was confirmed, we cried some ugly tears (not to say there weren’t ugly tears before then either).  We cried as we grieved the daughter we thought we were going to have.  We cried for what we felt she was being cheated out of, what we were being cheated out of.  I questioned myself, questioned my responsibility in her diagnosis.  How could my body allow this to happen to my baby? I had a lot of anger towards myself.  As I was working through these emotions, there was also the thought that I was glad she was mine.  I was glad I was her mom because dammit, I loved her from the instant she was placed in my arms and I knew we were going to give her the best life we possibly could.  I remember telling my husband that the only way we could look at her diagnosis was that we hit the jackpot.  The chances of winning the lottery are slim…and having a child with Down syndrome is also, relatively slim and gosh darnit, we won the lottery and that was that.  I quickly realized that I wasn’t prepared to shed any more tears over my sweet Vivienne.  I knew I didn’t want to look back at those first few days and only remember me crying.  I didn’t want her to feel my tears, my fears, my sadness.  I wanted her to know she was wanted and loved.  She was here, with us, and she wasn’t going to be different from her older brother. I quickly put aside the ‘dreams’ I had built up in my mind of who my daughter was going to be and decided I was going to let her be her own person and let her show me who she would be.

What has your child with Down syndrome taught you?

What scared me most about Vivi having Down syndrome was the unknown.  We didn’t (and still don’t) know what it really means for her or her future.  We don’t know how she will develop, when she’ll develop certain milestones or how Down syndrome will affect her overall health.  I realized that not knowing is what was most terrifying and it was because I, without meaning to, had created these goals and daydreams of all these things I wanted my daughter to become or to accomplish in her life, when really, those goals or dreams may not have ever even been ones she had for herself.  I realized I had done this for each of my children.  As I worked through Vivi’s diagnosis, I learned that my children will each have their strengths and weaknesses and I was rather silly for having dreamt up a life for each of them, one they may or may not have ever cared for personally.  I realized my job as a mother was to bring these little people into the world, love and care for them and teach them to be kind, loving and respectful people.  What they chose to do with their lives would be their decision.  In many ways, Vivi’s diagnosis has taught me to let go of my expectations.  Anyone who knows me knows I have high standards – of people, of my work, of things in general and while I have high standards for all three of my children, I have learned that what I consider to be success or happiness may not be what they consider it to be and it is not up to me to write their path for them.  They will do that themselves and that is what Vivi has taught me (so far).

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

It’s almost impossible for me to answer this question because I think everything about Vivi is wonderful.  Her eyes, her laugh, the sweet smell of her breath – I could actually eat her up.  Her feisty personality – she is a bit of a diva already, highly dramatic at times and oh so animated – I can only imagine what she’ll be like as a teenager (insert eye roll here).  To know Vivi is to love her.  She’s a charmer and she is able to put a smile on anyone’s face.  She’s turned everyone from big, tough looking bikers to little old grannies to butter.  Watching her captivate people’s hearts is probably one of the most wonderful things about her.

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

I believe it has made me a better parent.  It has taught me a lot about myself, my strengths and weaknesses and it has changed the way in which I parent for the better.  

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

I want the world to know that people with Down syndrome are just people, like anyone else, with their own likes and dislikes, strengths and weaknesses.  

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

My hope for all of my children, not just Vivienne, is that they will be happy and healthy.  Above that, my hope is that the world will embrace Vivienne, that the world will see her for who she is and not her medical diagnosis.  I hope that she lives a meaningful life, one in which she feels valued and respected.  My dream for her is to grow into a kind, loving and successful woman, whatever that will mean to her.  I dream of her graduating college and entering the workforce, acquiring a job where she is able to give back to the world but at the same time, I know I have to slow down and realize that I am doing what I have learned not to do – I don’t want to set out her life path for her – she will do so on her own – my only hope is that she’ll keep me around to be there for her when she rocks this world.

What have been good resources for you to learn more about Down syndrome?

Blogs, social media (Facebook and Instagram) and even though I love Google – I avoid Googling Down syndrome at all costs! Our pediatrician has been an excellent resource and Vivienne herself.  We are learning as we go.  I don’t want a book or a study to tell me what she may or may not be.  I’ll let her teach me that. 

 

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!!!