The 2% Can Suck It

To say that the last week has been turbulent would be a friggin' understatement.  It was packed with some pretty high highs & some pretty low lows, but we are leveling back out now finally.  And for that, I am soooooo grateful.

I don't like to go into details about all that is "wrong" with my girls for many reasons.  First of all, we spend probably 98% of our lives not really dwelling on that shit.  It brings us down, it makes the focus of our lives feel very negative, and honestly, we don't feel that is good for our family in ANY WAY.  It's not living, in our opinion.  WE CHOOSE TO BE HAPPY.

But I'll be damned if that 2% doesn't knock me square on my ass sometimes. It takes me back to the day of Claire's birth, to her many diagnoses days (with each doctor's prognosis growing progressively worse), to that fateful day when Claire was 3 and we almost lost her, to the shakiness/teeth-chattering/cold-feeling that consumes my body when I step into doctors' offices or hospitals (fear?), to the day we found out we were having our second affected child, to the complete terror/fear/heartbreak/anger/intense sadness/worry/etc. that flooded me at each of these times in my life. These moments hit me out of the blue.  I can be getting into the shower in a great mood & find myself sobbing halfway through for things I am POSITIVE I already dealt with & moved beyond long ago. I wish I knew what brought on these feelings.  PMS?  Stress?  Sleep deprivation?  Anxiety?  Hearing about other people's troubles?  I wish I knew... I try like hell to find that root cause so I can prevent that 2% from rocking my world here or there, but so far, there is just no rhyme or reason, no warning, no way to avoid this.  I think I'm just meant to feel these emotions... to work through them... to learn from them... to maybe help others realize they're not alone.  I don't know.  But this past weekend it happened again, and it was not pretty.

What made it even worse was that Scott was out of town for 5 loooong days/nights for business.  And I had PMS.  And I had just completed a 10-day detox recently & I was still grasping for things that I could/should eat as I reintroduced foods.  And both girls were sick with colds and/or ear infections.  And their track records precede them with shitty behavior while Daddy is gone, and maybe I put "The Secret" into practice a bit much by worrying they WOULD be bad?!??!  Suffice it to say stress levels were runnin' high, and that could not have friggin' helped.

Night 1 began with the dwarves not tapping out till 45 minutes before I had to get up for the day.  Yes, you read that correctly; my brats girls only let me sleep for FORTY-FIVE MINUTES the first night Scott was out of town.  WTF?  I was in straight-up survival mode that next day... pissed as hell at the entire situation, frustrated that I was having to deal with it alone, horrified at Lola's inability to eat well due to a cold/ear infection/jaw popping, and scared that Claire was developing an infection in her g-tube site.  SERIOUSLY.  Not now.  Not while your Dad is out of town!  You both are SO in time out.  Kidding.  Sort of.

Sleep came easier the next few nights, though it remained broken due to the girls not feeling well.  Claire's g-tube was oozin' like a mofo, and I resorted to some ancient home remedies to treat it  (and I'll be damned if they didn't work pretty well!).  I continued to grow more and more concerned about Lola's inability to eat as she had before, ALMOST resorting to having my friend/neighbor (a nurse) help me put an NG tube down her nose so I could feed her.  And considering the fact that I've used an NG tube several times in the past with Lola and once before with Claire, you would think that would not bother me... but for some reason, it SO DID.  (Click here to view my 2011 Feeding Tube Awareness week video, which shows both of my girls' dependence on tubes to help sustain their lives and nourish them ideally.)

It had been several years since Lola's last need for an NG tube, and I sort of felt we were beyond that.  I'd hoped that she might never need it again, as well as she has always eaten.  I've always had the supplies on hand JUST IN CASE, but I kept them sort of hoping that if I did, I'd never need to bust 'em out & use 'em.  Leave it up to my rowdy girl to down a 4 oz. bottle (almost normally) 3 minutes before the NG tube was going to be placed.  So, we held off, and I'm happy to report that she is MUCH BETTER now and her feeds have essentially returned to her normal (knuckles sore from knocking wood). 

This life, these emotions, these situations... they are SO UNPREDICTABLE.  They catch me off-guard, they derail me, and they make everything else in my life seem so unimportant.  I realize once again that all that REALLY matters is love... the relationships which bring me joy... the precious time spent with those we care about... and laughing a whole helluva lot.  Maybe this clusterfuck experience was meant to refocus me?  To remind me?  To keep me present & grounded in this moment?

I think that wave of fear that rushed over me and brought tears to my eyes occurred because in my mind, placing the NG tube was an admission that I COULD NO LONGER FEED MY CHILD.  And I think my mind jumped to the fact that this could possible equal a permanent g-tube placement for Lola as well.  (And it didn't help that Scott was also feeling this way halfway across the country... normally we're not both having these vulnerable moments simultaneously, dammit.)  And while I deal many times daily with Claire's g-tube & have for almost 8 years, I still do NOT want to go there with Mrs. Pocket unless absolutely necessary (there truly are no words to describe how incredibly terrified I am to use anesthesia with my 10 lb. daughter who is sooooo super sensitive to even TYLENOL).  I am desperately clinging to that last "normal" baby thing we have with her (and Claire, for that matter, even though they're 5 & 10 years old).  And while I do not feel I'm clinging to it at Lola's expense (normally she eats like a pig!), I still so badly do not want her to lose the ability to DRINK A BOTTLE.  I don't want two goddamned IV poles in my bedroom, flanking our bed, thankyouverymuch!  The one shitty, teetery, Kangaroo-pump sportin', royal-blue-Ice-Age-insulated-cooler/bag/clamp-totin' pole we've got is PLENTY.  See what I mean?!

Thank God you can only see PART of this awesome set-up in all it's splendor!  Even Claire thinks it's a joke.  Any suggestions on how to accomplish the same thing & yet "beautify" that bad boy?!  It's humiliating.  And it's in *MY* bedroom!

I'm not sure why overcoming this week long minor backslide has felt like such a personal victory to me (for Lola, if that makes sense).  Like we f'ing climbed Mount Everest, fist-pumped on the peak, and descended safely back to our "normal" life.  I realize we're probably closer, stronger, wiser, blah blah blah, but DAMN that 2%.  Sometimes reality is a bitch.

All I know is that I'm HAPPY again.  And I DO feel refocused.  But after a total of 24 hours and 45 minutes of sleep in 5 nights, I'm tired as fu....... Zzzzzzzzzzzz....

"Perhaps all the dragons of our lives are princesses, who are only waiting to see us once beautiful and brave." ~ Rainer Maria Rilke

xo