baby your a firework

Its funny how many thoughts and emotions I've gone through in the weeks since i learned I also have RP. Some people have asked me questions which i really like, and others have said nothing. I think maybe they feel sorry for me and I wish they wouldn't. Asking questions is never felt invasive to me, it has always comforted me , it shows me that person wants to understand and know what I am going through. Maybe it is different for others with vision loss.


The strangest and hardest thing to go through with vision loss no matter how strong you are is the realization that something you had seen before is now different. With anything degenerative  you can see something in your way and then months later not be able to make it out at all. Shapes of words may even get harder to "fake".

For the Fourth of July I went with my family to the family cabin . It was the most perfect get away after everything. We had a blast with the kids and just doing things with the family like cooking took my mind off of everything, it was wonderful. On the fourth we got up and got ready to go out and see the fireworks. I hadn't seen any since we all went to Disneyland in November so i was excited.

We had fun sitting and waiting and people watching.  Finally the time came for the fireworks and I turned my head as I heard the first "boom" to see the colorful burst in the sky.

And I instantly had to close my eyes. My eyes burned so much! The fireworks were so bright and with my night blindness getting worse and my light sensitivity I couldn't watch the fireworks. I sat and cried quietly for a minute til I regained my composure. My daughter kept telling me about them so I asked her to tell me what they looked like, the colors, and which ones were her favorite.


With my eyes closed I listened to what my husband and daughter were saying and just imagined what they looked like inside my head. 

I watched the fireworks through their eyes. 

Somehow this made me less sad and more happy.I opened my eyes a few times, head turned away from the display and just watched my husband and held my daughter.I think it was only so hard because this realization came in public and with something I was excited that I could always go and see, maybe not anymore.

I know I will go through more of these moments and its not what I'm going through but how i choose to go through it. maybe if i focus more on how my daughter sees it or memory's of things it wont be so bad.