This week was my daughter’s 20th birthday, which when you’re battling Mitochondrial Disease, is a birthday hard won. My daughter, who I call Queen Teen (but can I still call her that if she’s not a teen anymore?), is a beautiful, friendly, stubborn young woman who has fought every single day to keep walking and keep learning. Despite being doubly impacted with blindness and deafness she has learned to read words and understand sign language. Doctors told us she wouldn’t make it to her teens. When she did she was diagnosed with “Mito” and given five more years to live. That was three years ago.
Right now, my daughter is singing “Let’s go fly a kite” and “Take me out to the Ball Game” at the top of her lungs. It’s horribly off key, but I love every note. I don’t know how long we will have together. Two years? Ten? You stop worrying about it after a while and learn to live in the present. “Be here now” is more than just a philosophy when your child has a life threatening illness, it is the golden rule to live by.
20. Who will she become now that she is grown? What will she want to do? I love watching and learning more about her.
2 thoughts on “My daughter turned 20, which wasn’t supposed to happen.”
Thanks for writing this. We are a “day at a time” family.
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This is so beautiful, Terena! I truly cannot believe she is 20. Seems like just yesterday she was 12, then turning 18. I admire the strength and determination to live in the present that both of you have shown, and am in awe of the incredible sacrifices you have made as a mother and your ability to continue each day with such patience, cheerfulness, grace and warmth. It makes me smile to imagine Rhia singing at the top of her lungs. Quinn does that too. Keep singing, Rhia!