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 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. 

Saturday, July 21, 2012

Today we spent a huge chunk of time at Homemakers (furniture and household stuff) and at Target.  We wrote down items and prices.  We wrote forever.  It took forever.  And it was depressing.  We were only able to get through those two stores before it was time to head for home once again.  This inventory thing is honestly SO time consuming.  It takes up most of our waking hours and we even dream about it.  Who knew we had so many things?  Just walk up and down the paper products aisle at Target and see how many items you have in your home.  Yeah.  Unreal.

Also, Macey has come down with a fever.  She was 102.2 tonight after we got home.  Please pray that she doesn't come down with something more serious.  The last time she was sick was the mega hospital stay...

Sunday, July 15, 2012

I think I need to write.

I think I might explode if I don't write.  But I'm not even sure where to begin.  I've never felt more lost in my entire life.  I've never faked it quite so hard.  I've never woken up, day after day, begging God to make things different.  And as soon as I utter that prayer I realize I don't dare ask that of God anymore.  He seems to believe my shoulders are quite vast, and I feel my shoulders are narrowing by the day.  Things keep popping up - right now, serious concerns about Macey and Madelyn's health - in the middle of my stress.  Things that I don't think I can handle right now.  I can't believe God would give me "one more thing" and then...He does.  I don't even know who I am or what I'm supposed to be or do.  I only know that 5 little, precious souls need me to be their rock, and I'm trying.  I can do anything for them.