#candaristrong

[kcnlifeasweknowit]

This is our 2018 San Diego beach house reunion. It’s that time of the year we look forward to being together. Sunday was Pink Day in honor of Noah. * Over the years we’ve grown and have grown close—realizing that having a bond and making an effort to make these memories actually matter, if not for ourselves but for our children. Just as our parents did before us. * After losing Noah, it’s these individuals who have picked us up after breaking into a thousand pieces, a thousand times over. They’ve listened to us cry time and again and filled us with joy when we ran empty. I don’t know where Keith and I would be without them. This family is legit as imperfect as we are. We’re forever in debt to the love the grace they’ve given us. #candaristrong #livelikenoah #kcnhlifeasweknowit (at Mission Beach)

[kcnlifeasweknowit]

In the mornings, days and nights that pass by we are reminded why we love you so hard and miss you so deeply. Noah Bella, when I close my eyes it still feels like I was just holding you, talking and laughing with you and even singing you to sleep. You left us 10 months ago, yesterday. You lived a life on this Earth so profoundly with intention and sensitively with compassion all while living daily with the reminders of a disease that wanted to consume you. Your contribution and leadership with helping other heart families near and far will never be forgotten nor will we forget your love to teach us about our planet and the beautiful creatures that live on it because you had a love for science and conservation. You continue to be a constant source of inspiration and perspective; ushering in light for us all. We will always remember what you sacrificed and how hard you fought in your 13 years. But now you possess a freedom and guiding force that is undeniable. We carry that with us and the peace of knowing we will one day reunite with you in heaven. #heterotaxyremembranceday #kcnhlifeasweknowit #heartwarrior #girlpower #candaristrong

[kcnlifeasweknowit]

This is a post I don't wish to make amongst all the winter holiday photos that take up the majority of my feed. But it is currently our reality. I've taken many photos of Noah in this exact position, reading a thick book from bed just before bedtime. But this here happens to be a stark contrast from what i wish to see. We are still at CHOP. Just over two weeks in the CICU. As successful as her procedure went, Noah's recovery has been challenging and slow. She was met with difficulties with extubation on the first trial and a compromised right lung to go with an already plicated diaphragm. This is only the tip of the complex challenges she is having to deal with. However, her efforts to progress in the right direction have been most notable. She's been committed to every RT treatment. Every PT treatment. Every push to stand and take another step we make her do. It's painful and tiresome. But our girl is relentless despite the pain, the discomfort, the monitor beeps, and countless doctors, nurses and therapists that come into her room. Her lungs are looking better each day. Our days here have most certainly challenged her mentally and emotionally. Noah's enjoyed every message, drawing, and gift you have sent her as well as Keith and I. So thank you to everyone who sent her love, prayers, and kindness. Please continue to keep Noah in your prayers; that she continues to stay strong, positive and overcome the issues she faces and we can come home soon. Noah is reading The Return of Sherlock Holmes. #chdawareness #heterotaxy #donatelife #heartwarrior #girlpower #donatelife #CandariStrong