Negative

So, Teh Heavy(tm):

Nate recently saw a new neurologist.  I really liked the doctor; I think he's a smart cookie and he spent a lot of time with Nate before he suggested a new test.  We got results from the latest testing on Friday:  Nate tested negative for Ullrich Congenital Muscular Dystrophy.  Of course I'm relieved and happy but...  I didn't want to test for this.  I didn't want to go through this roller coaster again.  I'm so tired of doctors knowing what's wrong.  We go through the what-ifs, the devastation of thinking this could be it, and it's all for naught.  No, that's wrong, it's not all for naught.  We couldn't deal if we didn't prepare ourselves but having to know Nate's issues could be very serious then finding out that it's not this particular serious is so damn exhausting.  It is something.  Nate wouldn't have these issues if it weren't SOMETHING.  Just because he's doing so well, we can get to a place of not thinking about the SOMETHING.  But the SOMETHING is always there and the testing, negative results or no, reiterates that.

Friday, my poor mom is the one who got the news.  Our phones were down because a construction crew cut a fiber optic line that serviced both landlines and cell towers in our area so they called the emergency contact: Coco.  It was kind of a mess-my mom KNEW and couldn't get a hold of us.  She finally got in touch with Mr. A who then came home from work to tell me.  He was all jittery and I kept asking him if he was okay.  He said he was fine but I was reacting strangely.  And I was.  I had no emotion.  None.  I've cried a bit since then- happy tears, frustrated tears.  But, as I asked my mom, how am I supposed to  process this?  If anyone could tell me how to process all of this, I am taking suggestions.

It's not so much denial as it is survival.  I cried for the entire week after the neuro appointment.  All of my emotion for this was used up then.  I have nothing left to deal with this one so I'm moving on.  I did tell Mr. A that it sucks the world won't stop spinning so that we can deal.  It hasn't stopped so we're spinning along with it.

Mr.A gets nauseous on spin rides and I'm prone to getting colds when I'm stressed (seriously, I've been sick since New Year's and now have lost my voice completely).  We would very much like to get off the ride but we can't so we're dealing with yet another new normal.  Somehow, we'll do it while loving each other and loving our kids.  We'll keep being happy, spinning around the negatives.

3 years...

3 years ago yesterday, Tater got the trach.  Wow.  The trach and I have a love/hate relationship for all the obvious reasons.

Love:  it saved Tater's life, it's actually not as hard to take care of as it looks, it has allowed us to avoid numerous hospital stays, we've met so many wonderful people because of it;

Hate:  it can be a pain in the butt to take care of, Tater can't do a lot of normal kid things because of it, we can't leave him with just anyone and it takes a lot of planning when we do leave him, we have to deal with nursing agencies and Medicaid, we do not travel lightly and Tater's gear takes up most of the back of the van on trips.

Life with a trach is full of contradictions.  Life with a trach is easy and hard, quiet and noisy, simple and complex, full of joys and tears, fulfilling and draining.  And most of the time, life is all of those things at once.  I wouldn't change much about the last 3 years and I doubt if I could, I would change the trach.  Tater is who he is because of all he has  gone through.  And I definitely would not change a thing about this sweet booger:

This one isn't about the boys

Yeah.  We're here.  We've been dealing with Teh Heavy(tm) the last couple of weeks and my blogging has been only one of the several victims.  It's been so bad that even cooking, something I love to do, has filled me with dread.  Teh Heavy(tm) is a bunch of stuff that won't be resolved any time soon and it's not anything to blog about until we get some test results but let's just say I am tired of the damn roller coaster.  T-I-R-E-D.  Yesterday was the first day in a while I have not succumbed to the siren song of my bed and Investigation Discovery on TV while the boys were at school.  Something about murder and mayhem when your life is in disarray is comforting.   Yesterday, I even made a full-on meal.  I fed the boys before Mr. A got home so we could have a very much needed candlelit dinner.  It doesn't help that 25 of the last 30 days have been gray.  I need me some sunshine!

Last night while I was going to sleep, I thought, "I really just need to blog SOMETHING so I can get back in the game."  This is what I thought about:

Mr. A and I had been dating about 6 months when I needed to have some minor oral surgery.  They had to put me under so I couldn't drive home and Mr. A very kindly took off work to stay with me and get me home safely.  Which, looking back, he must have been more into me than I thought because that was one of the busiest times at his work and he was working something like 80 hour weeks.  hmm?  Anyway, I wake up pretty fast from anesthesia and am usually fairly alert afterwards (unlike some people, ahem, Mr. A).  I was ready to go soon after the surgery was over so the nurse indicated she was going to tell Mr. A to get the car ready.  She left me in a wheel chair in the hall and said, "Wait here while I go get your husband."  There is nothing more panic inducing than a nurse calling your slow-to-commit boyfriend of six months your husband.  I tried to jump out of the chair and was shouting (as much as I could), "HE'S NOT MY HUSBAND!" but it sounded more like "HEBOTBYHUBAB!" because my mouth was packed with gauze.   I don't know what she called him when she went out to the waiting room but apparently it didn't scare him off because here we are 12 years later.  Mr. A probably would have laughed it off but at the time, in my semi-fogged state, it seemed like the WORST THING IN THE WORLD.  That's pretty much the only thing I remember about that day because I took narcotics afterwards.