I was going through my videos of Hannah on youtube, and I came across the last 4 videos I uploaded.
They are videos that I made during Hannah’s last few weeks when she was having episodes. We took video of them so we could show her hospice doctor and nurse to help better manage her medications because she was so uncomfortable.
I HATE these videos. They are private, so no one can access them without a link. I actually have not watched them since they were originally uploaded, and I don’t have any desire to ever see those again. She was so uncomfortable, struggling so hard. She was truly suffering. Worst feeling in my life…
It makes NO sense in my head. I will never, ever watch these videos again. Even seeing the thumbnails on my youtube account remind me of those last few weeks of her life and the sadness I felt watching her in so much agony.
Yet, I can’t delete them. I don’t know why. My heart says I can’t delete them because it is still a video of her. I can’t delete any piece of her.
My heart wins out on this won for now, but my head just doesn’t understand why.
Can you store them somewhere lasting but out of sight (and at least tucked in the recesses of the mind)? I totally understand not wanting to remember her suffering, but not wanting to discard any part of her at the same time. Maybe donate them (or copies) to the NIH folks so that those moments might have some role in unlocking the management of the disease?
Hugs.
I was just coming here to say essentially what Kelley says. Though they were and are hard for you to see, they may be able to help other parents whose children have Gaucher and be able to deal with it. Every thing that you saw and happen to Hannah can be used to help another family.
I know your heart is grieving and will for some time. I pray that in time God will ease the pain for you and you can go forward with the foundation and help others.
I agree with Kelley. If there is a chance those videos can help others through that stage of the disease, or help with research, getting more funding to find a cure, you may never watch them again but someone else may need to see them to help other children like Hannah.