Friday, October 5, 2012

a panic of sorts.

so i haven't written much about abigail's NF lately.  she still has it (of course).  we see things sometimes that remind us, like new freckling in her armpits or groin area.  most days though-she's a pretty typical four year old.
in the beginning of learning she had NF, and learning more about it-everything sent me to a place of nearly panicking   something would hurt-i was certain it was a new tumor.  she had a rough week of sleeping through the night-had to be a tumor.
i've calmed down quite a bit since then.  i don't think everything that comes along is a reason to run to the neurologist or have an MRI.  perhaps it's because we've officially dealt with a tumor, and it was pretty obvious she had one.  perhaps it's because, in general, when your child is diagnosed with something, you go through a lot of different ups and downs before you relearn to live life in a new normal.
so a couple of night ago abigail woke up in the middle of the night crying.  this doesn't happen really ever.  she was sobbing and telling us her eyes hurt.  and in a moment of mom+NF+being tired i considered the emergency room.  she settled back down and fell asleep though so i decided to call the doctor the next day.
i waited on a return call from the eye doctor to see if maybe i should call her neurologist instead.  optic gliomas (tumors on the optic nerves) are not uncommon in NF.  she saw the opthalmologist in february, and they don't tend to happen that quickly (and it's a little less common for them to show up after a child turns four).  the office called back and said they didn't think it was any actual NF eye issues, and threw out a few more thoughts.
so then i of course am wondering about a brain tumor, and/or migraines (both also are not uncommon in NF).  until, of course, she woke up from nap.
yeah, she's sick.  common, everyday, virus type of sick.  runny nose, sneezing, coughing, fever.  her eyes hurt,  probably from the sinus pressure that was building up.  she's pretty pathetic right now.  she layed on the couch all day, and cried a few times saying, 'i don't want to be sick.'
and i laughed at myself.  the differences between my feeling on Down syndrome and NF are incredible.  i don't worry much about shilo.  she'll get there.  it may be slower than others, but she'll get there.  and for the most part i don't worry much about abigail.  but there's always this looming 'cloud' of future for her.  we don't know what it holds, just the idea of progressive, and that, that looks different for every person who has NF.
most days though, i don't have the time or energy to worry about the future.  i have to build pirate ships, and ward off pirate papa from stealing our treasure. i have to spend time smiling through the really hard process of reteaching shilo to eat.  so i allowed myself that one freak out.  and now i'm going to move on to bigger and better things.

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