Gratitude

I've been on this medical mom journey for 8 years now. Before my daughter was born, I envisioned what her future would look like and who she'd become. I thought I knew what my parenting would look like, but God had other plans.

The past 8 years have had plenty of highs, but also plenty of lows. I always viewed life in black and white, but it turns out life is much more gray. You can be both grateful and grieving. You can be sad, but hopeful. You can be exhausted, yet full of joy. You can be angry, but also grateful.

I have a unique perspective when it comes to parenting. Being the parent of child with a terminal illness is extremely challenging and mentally draining. It is also very rewarding. I don't worry about what my daughter's future will look like. She's not held to society's standards. I am free to love her unconditionally and recklessly. That is our only focus - to make sure she has everything she needs and make sure she knows how much she is loved.

I'm often told how strong I am, but people can't see the pain that's hidden beneath the surface. I throw myself into advocacy to cope with the grief of seeing my daughter struggle every day. I am both grateful for the blessings in our lives, but also grieving the life I thought my daughter would have. Every day she wakes up, I'm grateful for her beautiful life. I'm grateful for all the little moments we've shared and the memories we continue to make. I'm grateful for the people who have crossed paths with us. I'm grateful that despite all the heartache, God continues to show us his mercy and love.