From a Dragonfly Mom:
“Does anyone else ever wonder when enough is enough? The constant doctors appointments for all different issues. Everyone thinks R is handling it all so well because she has a smile on her face when they see her. But no one is there at night when her PTSD doesn’t allow her to sleep or the nightmares all hit hard. She had ear surgery this past Friday for a perforated eardrum, next Friday we to to genetics to see if they can make some connection between the dozen medical diagnoses, the week after that the head of ENT requested to see her so he can follow her case. And the week after that we have to get a brain MRI and diffusion scans to see what’s going on with her brain tumor so we can get some sort of plan formulated. No one knows why she’s still having seizures because the docs said they’re not related to the brain tumor (don’t understand that one). And then it’s time for another visit with the BMT doctor because heck I don’t even know but they scheduled one. When is it enough?
Most days I can’t even handle one diagnoses let alone the multiple completely unrelated ones. It’s like one step forward for 100 back. It’s impossible not to cry when R sits with her therapist and says “the tumor in my brain is trying to kill me”. She’s five! Five year olds shouldn’t know such horrors. I’m sorry yall. My heart is so heavy. We seem to get to a good place where she’s doing amazing and them wham something crumbles. And as parents we have to fake it till we make it because we can’t show our fear to our kids. That just makes everything worse! I hate this for our babies.”