In the year since their daughter was born, hope has taken on multiple meanings for Justin and Gracielle Yan.
From the joy of seeing little Mila open her eyes to looking forward to her smile, hope has become an important part of their lives, Justin said.
“I could never have guessed how powerful that word would be for the next year of our lives: hope,” Justin said.
Justin and Gracielle’s daughter Mila began struggling to breathe after she was born and was transferred to a NICU in another hospital. She has since been diagnosed with intractable epilepsy, hip dysplasia, dystonia, cortical visual impairment and has a GJ tube for feeding challenges.
For Justin and Gracielle, hope has evolved from those first days in the NICU.
“Hope has taken on a myriad of definitions. It’s evolved from hoping Mila comes out unaffected to now understanding that regardless of outcome, we’ll constantly find a new ‘normal’ and in that normal, there will always be love, laughter, and joy along with sadness, anger, and frustration,” Justin said.
“That what we imagined would be the end of our lives was actually the beginning of a new life full of unexpected beauty. Hope is the idea that we will find the love and strength to overcome any obstacle.”
They found Hope for HIE early on, and found a community they could laugh, grieve and share with. They’ve fallen in love with the other kids and families, learned about resources and diagnoses and helped new families when they begin their journey with HIE.
Recently, Justin joined the Hope for HIE board as the vice president of family outreach.
“I personally feel like the group has helped me work through my emotions more quickly because there are so many people who are currently and have gone through the same cycle as me. I’ve marveled at the strength of our parents and hope I can be to Mila even a fraction of what they are to their children,” Justin said.
To families just beginning their journey, Justin -- an American Ninja Warrior competitor -- suggests they treat it like training for a marathon.
Every day and every challenge prepares you for the next one that will require more of your strength and knowledge, he said.
“This stuff takes time; it takes focus; it takes effort; it takes patience. You hear the phrase ‘one day at a time’ because it’s truly that – with every passing day, you will become stronger and more prepared for the next,” Justin said.
When he first heard the words cerebral palsy, Justin was terrified. He wasn’t ready. This wasn’t supposed to be his life. He wasn’t strong enough, he thought.
“There will be a day when Mila becomes the little lady I thought I could never love, though I promise I’ll love her with all of my heart when that time comes. However, that day isn’t today and I’m thankful because my heart isn’t quite strong enough, but it’s big enough and strong enough and full enough to love the hell out of her right now,” Justin said.
“And when that time arrives, all of those days leading up to it will have given me the strength to become that parent I’ve long admired, to become the parent I thought I could never be.”