Friday, February 28, 2014

My Heart Is Now Full - Guest Post

Today I am sharing a guest post from HeartMom.  In honour of Heart Month, we thought it would be a great way to end off the month.

Heart Mom and her hubby with their son, stinky monkey
6 years ago our family began a journey, one I want to find meaning in, one that was given to us to share, to learn from, to challenge and to inspire. Our sick, premature, first born son was diagnosed 10 days after birth with hypertrophic cardiomyopathy and eventually pulmonary stenosis. Our prognosis kinda sucks, he may die early in life. It may be slow and drawn out with many interventions and challenges, it may be quick and sudden, ultimately the end result is the same. Our warrior will more likely than not succumb to his big heart or complications there of.

This prognosis is not a defeat for us, it is one we can and do draw strength from. It has connected us to a community. A family. Our heart family. They exist near and far, they support us, guide us, help us through the tests, appointments, results. This family inspired me to do something to draw attention to our community, to bring awareness to families living with heart defects. To reach out to the world and say look at our kids and how wonderful we are, how wonderful they make us!

In 2012 a simple social media conversation with a local photographer (and friend), Sara McConnell, turned into a project inspired by the heart babies who have come into my life and taught me about community, about family, about being inspired and inspiring. The RED BALLOON project was born. It has taken a little more than a year to complete the project. Now in the cardiology clinic at CHEO the walls are lined with the smiling faces of the beautiful children and families who frequent the clinic, accompanied by a rhythm strip mural done by a staff member in the clinic. This familiar place has now become a home.

To all the families who have been part of our journey, this is our thank you for all you do. To my beautiful son, this is how you inspire me. You inspire me to give and be someone better, to cherish every minute of your beautiful journey and never forget the importance of life. This project really has filled my heart.

And now a few pictures of the NEW waiting room!


I love this shot, showing all the kids that were involved in the Red Balloon Project!

7 comments:

  1. I love it!! There's so much love in that heart room! As a fellow heart mom I love how open and inviting it is for the kids!

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    1. YES! They can see themselves and faces they recognize!

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  2. I am inspired to witness something beautiful AND meaningful created in less than a year with the participation of your heart community. I hope I will never have to sit in that waiting room, (or any others in CHEO frankly) but if my path leads me to that particular spot where your amazing family sat, and waited, and worried, and endured, and thrived, I know I would feel the love emanating to and from all those warrior children and their strong, resilient parents. Congratulations on creating sacred ground. You are amazing Heart Mom. Thank you for sharing this and lifting my sad heart. I honour you.

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    1. She really is amazing... I am so happy to have her as a friend! Thank you for stopping by

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  3. That waiting room is amazing! No one wants to find themselves in that waiting room but I am sure if they do this room will now give them hope! (Judy Cowan)

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  4. I had such a big smile on my face when i walked into the new waiting room and saw the faces of you and your little warrior! I would love to be a part of any support or fundraising events you coordinate. CHEO has been great to our daughter and to us as parents.
    Was fate that we reconnect : ) -ts

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  5. What a beautiful waiting room. I just love how inviting it looks.

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