Bai will be 16 in less than 48 hours. How can this be?!
I feel so incredibly thankful for her, her life, the days we have had, and the future we have yet to experience – good or bad.
I never thought I’d get to celebrate, with her, her sweet 16. By God’s graces, the hands and minds of many doctors, and our undying love and patients for her, we get to have this day. We get to have this memory.
One of my favorite pictures of Bai was taken at Riley just days after she was born, by Bob’s parents. It is framed in her room – discreetly tucked into a shelf. A reminder of our beginnings. It holds in the image the first moments of being Bailynn’s parents. The hopes and dreams we held for her. It contains “Tuberous Sclerosis”. A definition that would tag her for life, not to define her, but redefine us.
Today, as I’m drawing images for different things, other people, I see the photo of Bailynn and my heart needs to feel that moment. I miss those tiny finger and toes. So, I sat and drew it. I made the “moment” a little painting, all drawn on my iPad. Minutes clicking by till 16…how many days and trials have come to pass. How many challenges she has faced since she was this sweet little baby. Years of finding her. Years of discovering small, but meaningful, milestones. Years of fighting. Tears, screams, and exhaustion.
She may not be the little girl I thought I was going to raise. Tuberous Sclerosis was defiantly not something I ever knew would come to consume some of my darkest days and every breath. She is better….I am better….Bob is better…our family is BETTER. TSC could have destroyed us, it could have. I’ll never let those words ruin. We will celebrate what they gave instead of what they took. They made us, well, us. So, here is a piece of my heart, a moment I hold dear. A memory. I hope for many more.