One thing parents like me don’t talk about with those outside of our community is the cycles of grief we go through. This may sound odd to those not inside our community, but it’s very real and sometimes hits us like a truck. Today is one of those days for me.

While checking Facebook today, a memory came up from 12 years ago. It was a video I had taken at one of my niece’s swim meets. It was fun to watch her race again, and I forgot how much I enjoy simply watching those races. Then I started to do the math. My niece is now 19. That means she is 7 years old in the video…. the same age Lyra is now. And it made me so sad. I am grieving the fact that I will never cheer Lyra on as she competes. I will never be able to share my love of competitive swimming with her. She will never have her daddy coach her from side of the mat in Ju Jitsu. We will never watch a dance recital, or sit in a choir performance. She’ll never climb a tree, or the big rock behind the cabin at Pinecrest. She will probably never even see the cabin at Pinecrest lake, where I remember sitting and having lunch with my Grandmother. She will never look at a medieval castle and marvel and the strength is took to build it with the technology of the time. She will never stand in an ancient place of worship and wonder what prayers have been offered by people centuries ago. I will never send her up skiing with her uncle, or scuba diving with her aunt. I will never watch her drive away from home to start her own adventures and start a life of her own.

Her world is so small, and I wish it could be so much bigger. I wish she didn’t have to struggle so much to do basic things for herself. I wish there was more for her beyond therapies, school, doctors appointments, medical tests, and small outings. I know that I am saying “I” a lot, and that will seem selfish to many people. But this is my honest experience. I’m sad for her, not because of her. I want to share the magic of the world with her, but I can’t for reasons I don’t need to explain. I know she is happy, because she laughs and smiles most of the time. I know she loves me, because she wants nothing more than to snuggle with me on the couch. I know that she feels wonder every time we watch My Little Pony, or Sing 2 for the millionth time. I know she has a great quality of life, I just wish I could share more with her. But that isn’t what she wants, or needs. By the time I pick her up to go to her next therapy appointment in a few hours, I will be fine. I won’t be grieving anymore. But these cycles happen, and they are normal for parents like me.