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!!! 

The Princess Halloween of 2016

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

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

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

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

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

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

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

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

Happy Halloween 2016!!!!

Hazel Love Blanket

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

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

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

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

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

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

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

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

Hazel's "All About Me" JK Book

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

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

 

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

Share Info With Teachers:

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

Comfort for Hazel:

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

A Conversation Piece:

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

An Ice Breaker:

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

Here's HOW I made the book:

1. I created the book in Google Docs.

2. Inserted my own photos.

3. Printed it all on white card stock.

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

5. Got it bound. 

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

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

You can also download the book right here to see.

Hazel Seguin

Junior Kindergarten

September, 2016

Hi!

My name is Hazel.

I am 4 years old.

l

I have a sister, Nola.

I have a dog, Nico.

This is my

mommy and daddy.

Here is my family.

Daddy is my favourite.

My favourite princess is Elsa.

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

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

I like to colour.

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

My favourite foods are pizza and pasta. I also love

Goldfish crackers,

cupcakes and CHIPS. Yum!

How could I forget?

Apples too…

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

I can keep my balance better when they are on.

When I wear them, I can ride my tricycle and

run really fast. Just like my friends!!!

Mommy says I have

Down syndrome.

I think it could mean,

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

I WILL DO THEM.

She says I am more like other kids than different.

I like to go swimming.

Visits to the park are fun!!

I really LOVE to play with my shadow.

I play outside with my friends.

I like to hang on the bars.

I can read words on my flashcards.

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

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

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

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

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

ME.

The ways that I am different, make me beautiful.

Just like many of my friends have different hair,

different eye colour or different skin colour.

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

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

Summer's End 2016

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

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

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

Tobermory 2016

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

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

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

Well, this vacation was the exact opposite of that.

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

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

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

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

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

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

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

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

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

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

Family selfie at Little Cove.

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

Little Dunks Bay Beach. SO SOOOOOOO pretty.

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

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

We passed a little beach along the way.

This colour - AMAZING!

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

Tobermory Marina. 

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

Sunset with the kids.

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

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

HAITI NEEDS US RIGHT NOW

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

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

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

Good Morning Everyone,

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

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

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

Thank you so much!

Jim

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

Behind These Eyes

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

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

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

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

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

This seems bad. I know. Like 'really-scary-crawl-in-bed-and-ugly-cry-for-days' bad. I get it. Feel it. Panic. It's OK! Now listen. 

Trust me when I tell you that this is going to be ok. You are going to get through it. You just don't know anything about these very intimidating words, "Down syndrome." I want you to look at these eyes. I mean really look. These eyes will teach you all you need to know. They are the most pure, wholesome and beautiful set of eyes that will ever exist. When you look at them you will feel ease and trust that something grand is about to begin. You will see Down syndrome and you will not be scared, you will be proud. You will see an exotic type of beauty that you could only dream of being a part of. These eyes are something you made. They are calling you, waking you and sparking something in you that you never knew was there. You will want to share this picture with the world and brag about your gorgeous, perfect daughter just like you thought you would. These eyes will look at you, take you in and love you. Down syndrome will become something that only exists behind these eyes. Everything else about your baby will come first.

You will feel PEACE, I promise.

You will feel LOVE, I guarantee.

You will QUESTION the future, I understand. 

You will be beside yourself at the beauty that is Down syndrome, I can't wait!!!

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

School Days - The First Of Many

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

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

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

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

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

She needs this. 

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

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

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

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

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

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

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

One last thing...

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

THANK YOU times infinity!!!!

The Day I Cried In The Tupperware Isle

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

Ok! Now that that's done...

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

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

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

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

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

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

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

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

Yes actually, I think she just might be.

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

Well the time has come.

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

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

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

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

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

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

In 2016, Hazel has OPPORTUNITY.

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

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

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

Lift us up Chasing Hazel family.

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

Much love and thanks...

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

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

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

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

1. Communicate

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

2. Be The Model

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

3. Set The Tone

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

4. Previous Meetings

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

5. Have Expectations

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

 

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

6. Prepare for Pure Joy

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

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