Monday, July 30, 2012

Today we were driving home from Des Moines after talking with our geneticist for the twins.  I said to James, "I never would have named my blog 'This is our Normal' had I know the directions our life was going to take." 

And I mean that.

I don't want this to be our normal.  How do people survive in this kind of normal?  I'm barely making it.  I mean, I feel sort of ok overall, but the slightest thing makes me want to snap.

In the past 24 hours Caden has locked the keys in our van twice.  Not once, but twice.  Yesterday it was in the garage at my brother's house (we're living here for a time being after the fire, and they are on a family vaca to MN, so we have indoor parking).  Yep, just locked it right up.  I gave him a nice talking-to, but apparently that was for naught.  Today I got to my parents' to pick up the kids after our Des Moines appointment this morning.  I couldn't have been there more than 8 minutes total - mom was getting ready to leave for work so we were moving.  Well Sir Caden had gone outside while we were gathering up the kids' things and yep!  Locked the *%&^ things in the van AGAIN.  I had planned to pull the keys out when we got home each time now (and there WERE extra keys...in the burned house) but he did it when I wasn't ready.  I swear, I almost lost it.  You know that feeling you get in your head, that whooooshing sound that happens immediately before you swear your head is going to explode right off your body?  That happened.  But my head never actually blew off.  I think it's going to happen soon, though...

So yes, house fire on July 8.  Total loss, "but everyone's ok".  I disagree.  Everyone is NOT ok.  But yeah, technically no one died.
 
Macey and Madelyn get the "possibly have Limb Girdle Muscular Dystrophy (LGMD) but we have to wait a few eternities to get some tests back" news on July 13 (that was a Friday, and I SAID I should have never gone to that kind of appointment on Friday the 13th).

Friday the 27th we learn that they do indeed have LGMD.

Monday the 30th we learn that they specifically have LGMD2i.  So if you're a google nerd go ahead.  And as an added bonus, any/all of our other children could possibly have it as well.  We can do a simple CK blood test and have it confirmed in a matter of hours.  I am waiting until at least fall to do this.  Just fyi.  Do not ask me if we have done this.  NOT ready. 

3 comments:

MARGIT said...

Hugs! Dont know what to say. I am at loss for words. Prayers ~ Matthews Oma Margit

Arlys said...

Tena- Would possibly be able to help you out with more things- We have a few duplicates- nice coffee pot- paper towel holder (brushed silver) queen sheets,

possibly 2 twin beds- checking with my family on that. They are only 2 years old- mattress etc...

just let me know if you can use any of it..
Also a 2 slice toaster

cantenna said...

I'm a complete stranger and I stumbled across your blog by random randomness, but love to you and your family. You definitely have a hard path, and I can only offer that this stranger completely sends support and comfort your way. Hoping things turn around for you soon. Life sucks! :(