4th Birthday Photo Session

4th Birthday Photo Session

Thursday, October 4, 2018

Mantra / Vision

I've said this a time or ten, but, these past 8 years I've repeatedly heard, "I don't know how you do it,  you're so strong!"  And I usually blush and say something like 'I'm no stronger than anyone else!  You do what you have to do."  But if you really want to see me fall apart, tell me there is something more to follow on my kid.  Tell me there's something else wrong.  After 8 years of being followed, tell me that you've discovered something new.  Yeah, then let's talk about how strong I am.  I'm no different than any one of you.  I might hide it better.  I may be sarcastic, even make jokes about other things, but it's all a distraction from what's eating me. At one point, I had someone assess me and they said in addition to all my glory that perhaps a part of me seemed a bit sad.  I didn't disclose anything about anything and I found this to be intriguing as I've always been the life of the party, or close to it.  

Again, want to watch me shrivel and doubt... tell me we need to be seen by a specialist more frequently to capture data.

Today, Andi, at 8 years of age, was diagnosed as having a coloboma.  What's a coloboma?  Want your head to spin (no offense to the Dr's studying this shit, but seriously... plain English - is it REALLY that difficult?!)  


I'd offer up other links, but I find myself getting rather irritated with the internet, and even vodka is not helping that.

Visit the CHARGE Syndrome Foundation page - I'm sure there's a ton of info. there that even to this day (no offense) I haven't studied.  Flashback:  when Andi was clinically diagnosed at 4 or 5 days old in the NICU, before being transferred to OHSU, Cory went home and spent about 8 hours reading everything he could about CHARGE Syndrome.  He came back to the hospital nearly hyperventilating to tell me whatever I do, don't read about it on the internet.  I think he actually forbade me to get online to do any sort of reading because he knew it'd freak me the f- out.  Which honestly, it would've as I was a shell of a human being on pain med's for a c-section, and just shell shocked from the surprise of all of Andi's woe's... especially when I was at the Dr's office so regularly.  Shell shocked... that's a great description.

Getting back to today... why didn't they see this prior to today?  First of all, when she was in the NICU looking for coloboma's - they wouldn't have had such a large vision of the areas around the eye, just a fraction.  Why didn't we see this when she was dilated a year or so ago?  Because we didn't utilize the Optos machine which can take deeper, better images behind the eye.  So, last week, we did her yearly exam.  Her eyesight deteriorated a slight .25% but improved in certain regard.  In that appointment, I agreed to pay extra for the Optos machine, which isn't covered by insurance (f-u insurance companies, times infinity - because if this could've been found earlier...and I didn't feel I had the funds to support the extra cost...  f-u.  You worthless co........ uhm, never mind.)   Anyhow, here are some pictures from today's appointment.  

First, grumplestilskin that didn't want to get her eye's dilated. Secondly, my big pupiled girl with her 'eye-dr shades' on...  She is unchanged.  It's Mom that needs to find her strength, resolve and sorry Dad, "balls o' steel!"  Tomorrow morning's kickboxing workout will probably be epic.  Enter therapy of a different kind.  'Maybe a little sad' is not something I identify with.  Like I've taught Andi to chant, our mantra is "I'm strong, I'm brave, and no one is going to push me around!" 

1 comment:

  1. Rage, fear, joy--all are there, and I think it is so admirable that you accept and express all these emotions. That is what makes you brave. It isn't always being strong or always showing a smile--it is that you accept your own emotions and those of Andi and Cory and then support each other as a family. Sending love your way!