Gearing Up for WDSD 2016

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

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

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

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

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

We would be honoured if you would...

Rock Your Socks

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

#chasinghazelwdsd2016

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

NDSAW #7 - Nola's Thoughts on Down Syndrome

To be completely honest, I had no idea that having Nola was even an option for us. Once we learned that she was going to be joining the family it was first, about the shock of knowing a second child was on the way and not at all about the sibling relationship between our soon to be 2 children. I never once thought about how Hazel having Down syndrome was going to affect this new baby. I think the shock of the pregnancy carried on until about half way through when we found out the babies gender. It was then that things started to get real.

She was a girl!!! SISTERRRRRRSSSSSSSS!!!!!!

I don't think there was a moment in my life that I ever felt so relieved (maybe after Hazel's 2 surgeries but it's close). This is of course no surprise to readers who have been here a while. I am obsessed with the fact that they are sisters. Immediately, I did a lot of thinking about how the new baby sister was going to affect Hazel. Hazel was going to have a sister. Hazel was going to have a friend. Hazel was going to have a nurturer. Hazel was going to have a caregiver. Hazel was going to have someone out there who loved her just as much as I do. The best way I can describe it was relief. God provided exactly what this family needed. Exactly what Hazel needed.

What I never stopped to think about until recently is just how Hazel will affect Nola? Specifically, how will Nola's sister having Down syndrome affect her. How is Hazel's Down syndrome shaping the person Nola is becoming? I mean she is going to a preschool that all her classmates are children with special needs. That's maybe not necessarily where I would have sent her if it wasn't for Hazel. Not that it's not a great place for her, but would I have chosen that place? We might not go as many places as she would like because it is too difficult for me to bring both my kids out and watch them run away from me in different directions. We don't do many extra circular activities yet. At the end of the day, I am not really sure how this impacts Nola.

What I can tell you is that Nola is just about the most loving and compassionate little gal I know. She loves something fierce. She protects like it's her job. She is the mommy of everyone, all the time. She is wise well beyond her years, she is always up for having a love fest, which is usually on the more aggressive side. She's the happiest, bounciest, sassiest little person I have ever met.

When it comes to her relationship with Hazel, well - what can I say?

They're sisters. She hits her, takes her toys, hugs her, kisses her, tries to give her the food on her tray that she doesn't want and vice versa, takes the food from Hazel that she does. They play, they read, they jump on beds together. They laugh, they cry and they watch TV (they almost never want to watch the same thing). When Hazel is upset, Nola asks her what's the matter and tries to offer her things until the crying stops. She copies her, she teaches her and she learns from Hazel. They pretty much do all the things that a parent dreams their children will do when they find out a brother or sister is on the way. So don't fret if you are having a child with DS, your kids will fight and torture you just as you imagine they might (and then a little worse even). They'll also love and play with each other just as you dreamed they would (and then maybe a little better even). 

Nola is the one person in this entire world who sees Hazel for who she is. Stereotypes do not exist. Different is not a concept she understands. She sees her in a pure and honest way. She knows Hazel is not the same as all the other kids but she also knows that EVERY SINGLE kid she's ever met is different from the next one, no matter who they are. Nola is in an environment where being different IS 'normal'. She goes to preschool with kids who have all kinds of different needs. Some have DS, some have braces, some don't talk yet, some are in wheelchairs. In Nola's world this is "NORMAL". This is her reality. It's what she lives. It's her culture.

The way I see it, Hazel has opened us up to a world we had no idea existed. But for Nola, she will always know this world. This world is shaping her and moulding her into the compassionate, loving little human that she is. For us, we had to learn to accept, understand and unconditionally love but for Nola, it will be who she is right from the very beginning. Everyday she demonstrates a culture of compassion and love. Everyday she accepts difference. Everyday she make me proud to be her mom and even prouder of the little sister she is to Hazel.

NDSAW #6 - Siblings

I have heard that upon the news of a Down syndrome diagnosis some parents are saddened and grieve the relationship that they always thought the new sibling would have with the older sibling. I have also heard that it can be a very devastating to work through these feelings of loss. There can be a lot of fear about the future wondering how the Down syndrome portion of their little brother or sister will affect them as they grow. Worry about how they will interact? What they will have to sacrifice? How will they explain or understand their new brother or sister's diagnosis? Having a newborn with Down syndrome is a difficult enough circumstance to try to understand but having an extra worry centered around how this may affect the whole family dynamic is another kind of stress entirely.

For October and the beginning of November, I chose to share (on IG and Facebook) relationships between brothers and sisters with DS. I chose to share their parents thoughts on the relationship that is developing and fostering among their children. By doing this, I am hoping to give a real and honest perspective from those who witness the relationship, Down syndrome included, unfold everyday in their homes. I am certain that by sharing these accounts new parents will be comforted and feel relieved about what each of these families have to say. Hop over to my IG page and/or Facebook page to read more about each family.

These families inspire me and I was honoured to share the precious relationships of their most precious children. Have a look...

Here's some of what these families had to say:

@littlewarrior (@macymakesmyday pic) says: "It's seriously been so amazing to watch them. God has truly given them a love for people with special needs."

@lilcocobea says: "If only parents were handed this picture instead of a list with information on "their options." 90% of parents opt out and will never truly know what they are missing."

@tarynaki_sauce says: "Nothing could have prepared me for the love and pride he has for Lennon."

@briihenn says: "14 years ago, I was blessed with having a brother with Down syndrome. The day you were born I knew my life would change completely, but you have made me into the person I am today and I could never thank you enough."

@blessedmommatobabygirls says: "She is our sunshine girl...she spreads joy to our entire family"

Which kinda got me thinking, of course I couldn't go without sharing the relationship between my own daughters.
 

Stay tuned...Last post of this series will be my own thoughts about my own daughters. 

NDSAW #5 - Ruby's Rainbow

Have you heard of Ruby's Rainbow?

Ok well watch this video and then we can discuss:

CLICK HERE TO WATCH VIDEO

Click link above if you are having trouble viewing the video :)

Ok so now you know how fantastic this organization is. Providing adults with Down syndrome scholarships and opportunities to go to college that may not have otherwise existed. In Liz's words, she feels she is providing them with an opportunity to "nourish their souls" I love everything about this.

The thought of Hazel finishing high school and having nothing else to look forward to or work towards is not an option in my mind. She WILL be a college student at one point in her life. All I can do as a parent is provide opportunities and open the doors. You will never hear me say that she "CAN'T" I am trying really hard to let her become the best person she can become. Sometimes that may be a little more difficult because society doesn't see her the way I do. Ruby's Rainbow is helping to change perspectives and expectations by giving individuals with Down syndrome an opportunity to attend college programs and become college grads.

The beauty of it all is that we GET to watch. We GET to see them succeed. We GET to be proud. And most importantly we GET to see change happen.

With every fist pumpin'-celebratory jumpin'-arm raisin'-tear sheddin' student that reads an acceptance letter or becomes a scholarship recipient the BAR IS RAISED.

People with Down syndrome are intelligent, capable, motivated and mostly EXCITED to be a part of the world. They know what they are up against and they go up against it anyway. They succeed and are grateful to have been given the opportunity. Let's try and make this the rule rather than the exception. Go to Ruby's Rainbow. See what you can do to help.

Thank you Liz who started Ruby's Rainbow. She is a charismatic woman who's heart is touching so many families.

Also, wanted to let you in on a little fundraiser going on where ALL proceeds are going towards Ruby's Rainbow:

Here is the website Reeve's Tee's that is hosting the fundraiser. Please check it out if you have a second. 

Thanks for you support everyone!!!!

NDSAW #4 - Brothers

Will, Hamilton, Cadman all live together in the same house. They are brothers!!!! This mama no doubt has her hands full, of cuteness!!!! I have been following this lovely family since they adopted their two youngest sons. Then I came to find out they had an older son, Will, with Down syndrome too. Love it!!!!

I happened across this post on IG during DSAM and thought I would share. This is straight from Amber's IG page @akdavis333. Head over and check this sweet family out, you won't want to miss out on these boysssssss!!!!

I love these words so much!!! Worthy indeed Amber. Thanks for sharing!!! 

Happy "Whip and Nae Nae" Friday

Yes the Whip and Nae Nae has fully taken over both my children's lives. They are obsessed. They wake up and ask for it, they ask for it over breakfast, after breakfast, over lunch, after naps, before dinner, during dinner....Well I think I am making my point. One would think that I would be completely repulsed by this song at this point.

BUT YOU WOULD BE WRONG!!!

I love it. I love it because I get to watch this happen. Every. Single. Time.

Tell me you don't love it.

I dare you!!! Y'all want to go and listen right now I know it.  When it's over, this is her asking for "more" 

This sweet face I couldn't resist. Gah!!!!! I know BEST FRIDAY POST in a while right?!!!!

Hope everyone had a great week getting back to school and starting new routines. 

Hazel Bazel

I'm trying to master the art of writing an update post without actually listing all of the things the kids can do and the things they can't - cause lets be honest - the list would be endless to any mother of any child. And who really wants to hear a mother raving on and on about her child's latest accomplishments. The only people who care the same amount, if not more, about milestones are the grandparents.

I also HATE the comparison thing that happens naturally among parents and their children. If there is nothing I have learned from Hazel it's that all children have gifts and talents that present themselves at just the right time and are usually on the child's terms. Both my kids have taught me that there is no "NORMAL" time to do something, they do it when they are ready. Let's just say "BabyCenter" hasn't been a resource I use often (or really ever). What I do use as a resource, religiously, is Instagram. Every single time I pop on there and see one of the sweet littles that I follow doing something new - reaching a milestone, saying their first words, singing a song, using their first signs, loving on their families, sliding down a slide, using a fork, drinking from a cup or jumping for the first time - my understanding of the absolute individuality among children grows deeper. 

I digress….

What can I say about this little miracle child?

She is just about the sweetest thing I've ever met. Don't get me wrong she definitely has her moments but ohhhh the sweetness - it's almost too much. She has become such a 'go with the flow', easy going, simple kinda gal. Just give her a bucket of water and let her go - she's happy. Put her favourite movie on and give her some chips - perfect. Take for a car ride, no matter the duration, awesome. Cupcakes? WINNER!

That said, you better make sure when she wants to listen to "songs" that you pick the one she wants to hear or look OUT! When in doubt Taylor Swift "Shake It Off" is a fail safe. Over the past few months she has gotten quite good about learning the names of each song or each movie she wants to watch, so that has made things easier (easier meaning cuts down on the whining - Praise Him). Here's the current list: All About That Bass (still), Hey Mama, I and LOVE and YOU, any Zooey song on You Tube, any Jimmy Fallon lip sync battle, any song from The Sound of Music, Katy Perry songs and Adele (still). She impresses me everyday with how many lyrics she has memorized from each of these songs. Also, her dance moves are getting to be quite serious as well. We dance a lot in this house A LOT!!!! 

She has been so great with people the last few months. Always greets everyone with a smile, likes to be around the other kids, doesn't panic when I leave the room, ventures off on her own a little more than before. It's so beautiful to see her actually enjoy people and being out. Something that wasn't always her favourite. Our visits with friends and family have become so incredibly relaxing and fun. I really hope this Hazel is here to stay. Really more for her sake, it's such a joy to watch her have fun and relax with her friends and family. 

If you've been reading a while you'll know that I believe in phases. Especially with kids, everything is a phase. At the moment we are in midst of a great phase with Hazel. I am trying to enjoy every second of her and who she is now. I love seeing her happy and content. I appreciate her willingness to make good choices. I am just plain old enjoying being her mom. She has been an absolute pleasure to parent these days. And no I am not that mom who thinks their kids are a joy to parent all the time - there are times when things are just plain old difficult. Yes, we still have the difficult times but right now the peaceful, happy moments definitely outweigh the pull your hair out moments with Hazel. 

I think my favorite part of this phase is watching her learn and grow. The best way that I can explain it is that she's maturing. I can see her starting to think more, starting to connect some dots, starting to show so much confidence in new activities. She tries things now that she wouldn't even consider trying in the past. Maybe it's the teacher in me but I find myself so interested to watch her thought process evolve and change (I have plans to talk more about this 'evolution' in a future post so I will leave it at that for now). There seems to have been a shift in our lifestyle at home and I would love to share a little more about that with you soon.

For now, I am looking so extremely forward to spending the rest of the summer with these sweet girls of mine. Watching Hazel continue to grow and mature along side her sister. Watching her little expression while she experiences each new days adventures. Observing as she takes it all in, processes it and learns to communicate it back to me. I wait in anticipation everyday for her to ask me to "hold hands" or for a "kiss" (and YES those requests stop me dead in my tracks and they are immediately obliged). 

The bittersweet truth is that she is just now seeming a little less like my baby and a little more like my little girl. It's hard to digest. I have to remind myself that her growing is inevitable, it's happening. I struggle at times to accept this little fact.

Something I NEVER struggle with is celebrating and being proud when she accomplishes something new. It was not so long ago I was sitting with a newborn baby Hazel in my arms. I remember that 30 seconds in the NICU (ok - more than 30sec) when I thought she wouldn't do ALL the things other children do. Such a staggering thought for a new mom. Still to this very day, I can't guarantee what milestones she will reach or how far she will go. What I do know is that I am certainly not going to put a ceiling on it for her. I plan to provide her with every opportunity that is humanly possible for her to reach her full potential. As she is climbing that mountain, I will be there every step she takes to shed a tear when she slips and scraps her knees or to do the crazy jumpy clap thing that only a mother does when her child succeeds. Either way, I assure you that I am the one who has been given the honour of holding her hand while she climbs. 

Hazel's Heart Day

It's been 3 years since this little lover has has her heart exposed on an operating table, laying in a doctors hands. It's been 3 years since feeding her was such difficult work, even harder for her to gain any weight. It's been 3 years since we have had to watch her struggle for energy to eat or play.

The entire day almost passed us by actually, but a sweet friend reminded me just in the nick of time. It's kinda funny how these thing work out. Matt and I had been reflecting a lot over the weekend about how much Hazel has changed recently. It's like she's maturing and growing. The way she is in certain situations is so different than she was 6 months ago - 2 months ago even. We have been talking about how lucky we are that she is happy and healthy. We had a heart apt with the cardiologist where the report was raving and her heart is perfect.

Even though I did't realize at the time that her heart day was approaching, I feel like I did on some level. For some reason I couldn't bare to be away from her for too long (that's not the norm I assure you), but this last weekend - it was. I wanted to hug her, kiss her, play with her, hold her hand, sit with her. I couldn't motivate myself to do anything that wasn't with the girls. I enjoyed them - plain and simple - I was present. Something that really isn't always easy when you have a million things on your mind and a trillion chores to get done.

And with absolutely ZERO forethought of this day approaching, I happened to get this beautiful photo of me and my girl that so accurately portrays the event, the sentiment and strength I get from her. You can see her scar, and her growth. But this time I am holding her heart, because now it's mine and I'm not letting anyone else have it.

Thank you sweet Hazel for being the rock that you are. Your determination is admirable. I will never know another human who I respect more - EVER. You teach me to love better every single day. You carry me. 

Happy Souls, Healthy Hearts

We just had a visit with Hazel's cardiologist and the verdict was better than we could have ever expected. 

Her heart is perfect!!!!

Before her heart surgery it was a mess, and after it was slowly healing. She always had a few areas that the doc was watching to make sure no problems were developing. Nothing major, just keeping an eye on it (AND that's why I LOVE our cardiologist!) When we went in last week, he reported to us that those small issues had resolved themselves and that her heart was functioning all in the "NORMAL" range. Precisely where I want the numbers in reference to my baby's heart to be - NORMAL!!!!

No going back for 2 years and I'm pretty sure he just wants to keep seeing her because he loves her. AND I CAN TELL!!! He adores her. I adore him. I love the way he looks at Hazel first as a child, he looks at her as a whole. All 34lbs and 101cm of her (when your baby was once in failure to thrive you never tire of seeing her weight and height increase with every doctors visit. Oh Yes - of course we had to weigh Nola too - 27.9lbs and 88cms). He looks at her face and her smile, her tempermant and he can tell she's doing great. He asks questions like, "is she happy? What do you guys think, you know her best, any concerns?" We were blessed to have this man looking out for our girl. 

And after was play time at the park with our warrior friends from the NICU (and a couple extras). The one great thing that came from the LOOOOOOONG stay in the NICU was these families. So fun to watch them all play and carry on in the park together. And by "play together" I mean all the kids running in ALL directions at ALL times ALL day. Except for when my kids napped, which was amazing. Mommy and daddy got to have coffee and visit. 

Love these kiddos so VERY much!!!! xo

Have a great day!!

Occupational Therapy - What's in the Bin?

How about we start off 2015 with an old (really old) Occupational Therapy post? I promise to return with a full update and account of the girls Christmas.  

 

As Hazel grows and masters old skills, we change the activities we do in Occupational Therapy. Here are some of the toys that are in our OT bin right now.

Hazel really does well when sitting to do these activities are part of her regular routine. We try about 3-4 days a week minimum. Sometimes we sit for 5 minutes, some times for 20. Sometimes we do all the activities, sometimes we do one. I really try to make it a fun experience for both of us. That being said, sometimes I take her out of the chair immediately after I put her in. You gotta know when to fold em'.

Hope this helps!!! Any DS parents out there that wish to share their ideas, I would love to hear them!!! Post a comment or email me!!!!

DSAM - Love me some Abby & Bailey

In an effort to continue to advocate during Down Syndrome Awareness Month, I'd like to introduce you to a couple of little girls that emanate pure joy in ALL that they do. Seriously, I dare you not to smile when you see Bailey's sweet sweet face. I met Christy, the beautiful mama of Abby and Bailey on IG. We are virtual friends. Her feed lit'rally brightens every single day for me. These girls have smiles that WON'T quit. After having Bailey, they adopted Abby. Happy endings do exist!

I was looking through my IG feed one day and I came across this pic of Abby. Then I read her mama's words. I was speechless. I stopped and stared at this sweet girls pic and I just thought...

YES!!!! YES!!!! YES!!!!

This is exactly right. I feel the same way. Truer words have never been spoken. I am so proud to be a part of this world. Yes, it's challenging at times. But, LOOK!!! It's worth it. Every time I have second guessed myself, or Hazel. All the times I cursed having to do therapies with her. All the times I wished that "that one thing" was just east for her to do. It's all worth it.

Well just read Christy's words.

She says it best...

"Can you imagine what your life would look like if things that came easily to others weren't so easy for you? What if things like walking and talking and writing and jumping, and swallowing were things you desperately wanted to do but had to work and work and work to accomplish them? Would you do it with a smile on your face? With determination and without giving up? Today Abby drank from a cup unassisted, and she did it beautifully, remembering all of the instructions given to her by her speech pathologist to help her swallow safely and prevent aspiration. Girlfriend rocked it and grinned the biggest, proud of herself grin ever when she was done. I don't know when in the history of mankind that people with special needs became the ones that were made fun of, picked on, and not given opportunities to thrive. If anything our society needs to be looking up to these individuals who work so hard to accomplish things that often come so easily and naturally to their typically developing peers. Some days I want to weep for my daughters because of the way society has imposed its untrue and unkind stereotypes on them. Every single day I want to applaud them for determination and hard work and abilities. They inspire me."

AMEN!!!!

This is Bailey. AHHHHHHHH!!!!!!! I. Can't. Even.

This family is beyond inspirational. To follow along with Abby and Bailey's journey please find them on IG at user name "cjpics." Christy's words about adoption are raw, true, emotional and inspirational. Every time I read a post about her sweet Abby and their experience with adoption it's like I'm receiving a call to action. There are babies out there that need homes, love, support, mamas, dada's, brothers and sisters. These babies need medical attention, therapies and TLC.

To read more about adopting a baby with Down syndrome, please take some time to visit Reece's Rainbow. A website dedicated to finding sweet little angels with Down syndrome their forever homes.

Hazel LOVE

Guys!!!! My sister in law has dedicated one of her gorgeous blanket designs to HAZEL!!!!! It's called "Hazel Love." It's a limited edition...so order now.

Timing could not be better. Down syndrome awareness month is still upon us. She has decided to donate part of the proceeds to our local charity that support Down syndrome, Up About Down.

She does not have this blanket listed on her website yet, so feel free to head over to her Bellalulubaby Facebook page and PM her if you would like details on how to order.

Hand Strengthening - OT & Down Syndrome

Down Syndrome Awareness Month continues. I thought I would share an OT post. Hope it's helpful. We do Occupational Therapy (OT) with our daughter Hazel. Click here and here to find out more about what OT is and what we do here in our home. It's important to note that I AM NOT AN OCCUPATIONAL THERAPIST. I am just a mom who works closely with one and listens to everything she has to say like it's the bible. I strongly encourage you to speak to your child's OT before trying any of these activities to make sure they are a good fit for your child.

 

Sometimes children with Down Syndrome experience low muscle tone. One area this can affect is their hands, making it difficult for them to manipulate objects.

I always hesitate to add an age to these posts because every child develops individually. We have been doing this one for a while and will continue to do so as she grows. As she gets stronger, I will find more challenging objects for her to pull apart.

2 OT activities we do that target Hand/Finger Strengthening.

1. Pull Apart Toys

Here are a couple of things we use. We also use MEGA blocks, bristol blocks, snap beads and pretty much anything that links together. Some are easy to pull apart and some a little more challenging.

2. Play doh

I hide objects in the play doh and she digs through to find it. She also likes the feeling of it so she squeezes it and manipulates it with her hands.

There ya go!!! Too easy.

Happy "100th" Friday!!!

 

UNBELIEVABLE!!!!!!!!

I CAN NOT believe it's been this many Friday's since I started documenting our life with Hazel. What's more insane, is to think now we have 2 littles to call our own. Unbelievable!!! It astounds me everyday (yes even on the hard days) just how blessed that we have been with our 2 little miracles.

Even more so, I am so honoured to have a space where I can share our journey with you. The way that you've embraced Hazel for the little girl that she's becoming. Yeah - sure - she has Down syndrome but that certainly doesn't define her. It's just a small part of what makes her who she is and who she will grow to be. I enjoy sharing her triumphs and tribulations with you.

You have been with us for 100 Friday's!!!

That's gotta be a milestone in our relationship. 100 pics of Hazel (and Nola too). 100 smiles. I want you to know that nothing makes me happier than imagining the 100 smiles that have landed on YOUR faces in the past 100 Fridays. It really is the least that I can do for you...

You, who takes the time to follow our girl.

You, who makes space in your heart to love her.

You, who has accepted something new and different into your life.

You, who have always supported me while I try to change negative opinions and stigmas about Down syndrome.

You, who see Hazel for the determined little girl that she is.

You, who spread the joy and love that children have to offer us.

And most important...For every person that has opened their minds and hearts up to those with Down syndrome, because of the interest you have taken in Hazel.

Thank you so much for being a part of the change, for allowing me to educate and advocate for my little girl. Please help me to continue to spread awareness for the next 100 Fridays.

Happy 100th Friday to you!!!