Amira

Two days.

When most think of heart attacks or open heart surgery, they associate it with a certain age. But at just two days old Amira would have her first heart operation. At six days she would suffer cardiac arrest and barely over her first week in this world she'd require life support followed by a second open heart surgery.

It would be a lot for anyone, at any point in life, but especially so for a newborn and her new mom.

"No one understood why she wasn't getting any better," explains Jaiden, Amira's mother. "We found out her heart was growing collateral veins and the team decided a heart transplant would be the best thing for her."

Now just over 8 months old, Amira has already spent half her life on the list, waiting for her new heart to come. And, she's spent nearly all of it in SickKids.

But despite the many hours that turned to days and weeks spent within hospital walls, Jaiden has been able to create a sense of normalcy and a home for her and Amira, held within the moments they share. "We spend our days going for walks around the hospital and playing."

It's within these snapshots in time that Amira's true spirit and zest for life shine through, proving her incredible strength, resilience, and her mightiest of hearts. "She's full of personality!" shares Jaiden. "She's very sassy and smart. She loves her toys and learning new things. She loves to smile and laugh."

But as with all life, no matter where or how it unfolds, there comes the good and the bad.

"It was most challenging handing my daughter over to a surgeon, watching her in pain and not being able to do anything about it -- seeing her sick and knowing I can't fix it ... I cried for days. I didn't know what this meant for my life or Amira's."

Yet, having overcome the hardships of those lows has made Jaiden see the days Amira has been given, to spend with her, as a gift in its truest form: "The most rewarding thing has been watching my baby grow and seeing her happy," she says, adding that the highlight of her every day is seeing her baby girl smile.

It's a life no one may imagine or choose for themselves, but one Amira and Jaiden have bravely faced together, with the solace and support of family. United, they find power in the rawness of the experiences not many have had to endure, and all the wisdom and perspective that comes along with that rare insight -- an understanding that makes them both wise beyond their months and years.

"Living this life makes you appreciate all the small things most people take for granted," shares Jaiden. "Every day you have with your child is special."

It's part of why she feels it so important to photograph their days together: regardless of the struggle and circumstance, it is their life; it has shaped them; and all life is worth living, sharing and celebrating.

 "Even though these times are the worst and the hardest, it's what makes Amira her. I want to be able to look back and say, 'See Amira, you survived this. You did it.' I want to be able to show people what life was like in the hospital."

Above all, Jaiden hopes to someday create a new life with Amira, and build their own world, freely together, going wherever they choose to go; the life she'd planned for and imagined would unfold in the days to follow her birth.

"I would love to be able to take my baby home. I want her to be able to grow up and do normal things like go to school and make friends."

And -- no matter how much extra time it may take to get there, or how the path and goals may shift or change over time -- Jaiden's sure to hold onto every cherished beat, and every single second given as she and her courageous heart warrior continue to adapt, charge boldly ahead and create and capture precious moments of magic midst the chaos, in their own timeless, untouchable world together.  

"Tomorrow is never promised," she reflects. "I'm most grateful for Amira just being alive."

Jen Allison