Saturday, October 29, 2011

A Dose of Hope

Today was one of those days where I hold on to hope, a lot of it. As Zoe is growing - walking, talking, laughing and enjoying life - I always have that dreaded question in the back of my mind, "how will I live without her?" It's a morbid thought, but a harsh reality I've seen so many families face since Zoe entered our lives. Many times I find myself just staring at her, watching her live and breathe.

Today was one of those days that I stood in awe of my 18 month old daughter. She's given hope to families who didn't think it possible; she's taught me how to live better - and bigger; she's inspired hundreds to appreciate each day; she's given me an incredible family whom I never would've known.

Tonight, I watched a preview from an upcoming documentary. And cried. And cried some more.

Families with children born with Hypoplastic Left Heart Syndrome all have one thing in common. Hope. We live and breathe Hope. Most days, it's all we've got.

If any one person solidifies hope for our family, it's Jeni Busta.

Watch a preview from Jeni's upcoming documentary.  Be inspired. 


  1. Nice try, but she is not the oldest living survivor. There are many much older than her.
    here's one for example

  2. Anonymous... I think the film says she's one of the oldest living survivors.. not THE oldest. Also, Paul Cardall had (pre-transplant) tricuspid atresia- not HLHS.

    What a great video! This truly is a dose of hope. :)

  3. Such a great post Stacey. Jeni gives is such an inspiration to us and so many other families. Anytime you see an adult with HLHS thriving it is such a gift of HOPE. Thank you for posting!

  4. The video does say "ONE of the oldest, NOT the oldest". Either way, it's the message that's inspiring. We need to keep seeing story's like this! Thank you, Stacey!

  5. Thanks so much for posting Stacey! So excited for the video. And yes, Jeni is SUCH a great dose of hope!!!

  6. you don't know me but i follow your blog,i also have a 19month old son with HLHS and the same things that who wonder when you see your little one are the same fears i have. The only thing we must do is always pray that God give us the strength to accept his will whatever it may be. wishing you and your daughter all the best.

  7. Just found your blog tonight when I was web-surfing!! We are a family of four who became five on November 17, 1993 when I gave birth to our third daughter. She was born with undiagnosed HLHS!! She had her Norwood when she was 30 hours old, her Glenn in April 1994 and her Fontan in December 1996. She has just had her 18th birthday!! She graduated from Grade 12 in June 2011. She has her driver's licence and is working as a nannie. Life has been pretty darn good. She did functional academic during high school. She had speech delay and language and articulation delay. She does have cognitive processing and learning delay but to talk with her you would never know. She is amazing. She has had her appendix out at age 14 and had surgery for a broken ankle from falling off her bike at age 15 and yes, I told her she was fine!! We got x-rays the next day!! I'm not the first mum to send their child to school with a broken something!! And won't be the last!! LOL!! All normal stuff. I wish you much happiness with your daughter as she too grows into a very remarkable young lady.

  8. hello my name is heather i too was born with tricuspid atresia I am 21 ill be 22 on dec 7 2012 i enjoy finding others with this condition i was also born with cleft lip an dcleft pallet i have several surgeris for that and alos have had a fontan done when i was younger so it is truely amazing to find others out there around my age it really makes me happy knowing there are other surviors and warriors out there like me if you would like to talk more or any one else who reads your story please do email me i would love to hear more on your story of life