The need to educate, advocate and simply share the joy she brings not only to our lives but to many lives daily, became the driving force behind much of how we lived our lives over the past 5 years. As the moments passed and our lives seemed much like any other families, we fell deeper and deeper in love with Hazel. We began to get to know Down syndrome and welcome it into our lives. At first it came by for a casual dinner date every now and again, which then turned into an aggressive live in mother-in-law demanding attention and making us do everything its way. To the now preferred presence that sits quietly in the background just waiting to be referred to if we need it. We co-exist together quite nicely.
What also became clear over the last 5 years is that the community as a whole is still miles away from truly accepting, understanding, and accommodating people with a disability. That is not to say that the DESIRE to accept, understand, and accommodate is absent, only that the method as to how we do these things needs a little work. I get that. That's why The Chasing Hazel Foundation is here.
Do I have all the answers: NO. Of course not.
Did I fully accept, understand, and accommodate Down syndorme before I had too: NOPE.
I've spent the last 5 years getting schooled on living with a disability by watching and supporting my daughter navigate through life. Which very often looks the same as any child that is learning, growing, and achieving. But sometimes it looks different - not different bad - JUST different. I have had the honour and privilege of watching other children with Down syndorme and their families celebrate milestones, share their hearts, nurture the sick, and fight the fight in every regard when it comes to truly accepting our children for who they are. While also, helping EVERYONE ELSE accept our children for who they truly are.
Shortly after Hazel was born we were blessed with a second daughter, Nola. One who also doesn't fit into the "normal" category in terms of her growth, intelligence, personality, or the rate at which she's been able to meet certain milestones. She is determined to get things done. Really hard things that she shouldn't want to understand or try, she's gettin' it done. She's doing her, the best way she can. Both of our children make us proud. The longer we parent these girls, the more obvious it is to us that standards and comparison are not a valid way to determine anyone's worth or capability.
Why is it that we only seem to be impressed by growth when it is beyond the standard expectation of ability?
Why is it that we are not impressed with the amount of determination and will that leads us to reaching our goals?
Our success should most definitely be measured by the blood, sweat, and tears that we put in to reach the end result. So what if that end result is taking your first step at 3, or 10 or 25? So what if it's making eye contact while you speak to someone? So what if you learn to tie your shoe for the first time when you are 20? So what if your first way to communicate is through touch, or signs or grunting?
SO FREAKING WHAT?!!!
The real measure of a person is the amount of SOUL that goes into getting to the end. The amount of HEART. The amount of GRIT. How hard did you work - and then work harder? How many times did you want to give up - but didn't? How many times did you cry - and then carry on? How many times did you say, "I can't" - but then you did? THAT is what should be used to determine a person's worth. THAT RIGHT THERE, IS THE STUFF THAT COUNTS.
So we have two daughters that are completely different, who do them the best way they can. In my opinion they are ROCKIN' it. I have witnessed countless others who have Down syndrome and who grow and achieve at their own rate, with their own strengths and uniqueness. I celebrate with families on social media daily regardless of what the achievement is. In my opinion, THEY are ROCKIN' it!!!
We all have gifts, strengths, weaknesses. We offer our own uniqueness to everyone we encounter. Everybody has something that makes them, them. In sharing this with the communities in which we live and the world of which we are a part we create DIVERSITY, COLOUR, and VARIETY.
I want The Chasing Hazel Foundation to highlight this diversity, colour and variety. I want to respect what makes us different and embrace what keeps us the same. I want to talk about, share, educate, and celebrate with the community just how much we have learned about the extra chromosome and ultimately what Down syndrome has taught us about EVERYTHING else:
We are all individuals.
We are all strong.
We are all equal.
We are all capable.
We are all different. And that's ok.
We are all worthy.
We all want to be loved.
We are all deserving of love.
We are NOT ALONE.
So how do we do this? What's the key to bring this all together?
Inclusion can look different for each individual person and that's ok. In my opinion, the only way to make room for our differences is to be around differences. Living everyday along side a diverse population and exposure to individuals of all abilities can only strengthen our understanding of one another. Respecting each other for who we are and what each of us brings to the table creates a space where we are all encouraged to be exactly who we are and celebrate what we are capable of. Eventually we don't see "differences" anymore, we see a colourful, tolerant community filled with people that live, work, and grow together everyday. If we practice inclusion, we will have built a culture where we are all valued for who we are. A culture where our children have grown in and developed an innate compassion for every individual regardless of their abilities.
I want The Chasing Hazel Foundation to be a big part of creating this culture by offering support to families that have children with Down syndrome, developing inclusionary community programs where all our children can learn together, and spreading the message that each person has worth and a great deal to offer the communities in which they live.
To read more about our foundation or see how you can become involved, please click on the website below:
Above photo taken by Jeff Casey (Snapd)
We had a launch on March 20th, which officially put us on the map. We were completely blown away by the amount of friends, family and community members that came out to support us on this next adventure. The room was full, on a Monday morning, right after March break - That's loyalty!!! It was amazing!!!! Thank you so much to all of you who made the effort to come out and hear what our plans are for the local community and families that have children with Down syndrome.
We have so much gratitude for your support. Thank you so much!!!!