And Then It Was Dark…

I noticed the humming abruptly stop.  The fridge, the computer…all those little things around the house I don’t pay much mind to unless they’re not there for my every beckon call.  It was like the heartbeat of the house – just gone.  It happened late afternoon so we didn’t think much of it.  The sun was still quite high in the sky and the heat was near sweltering.

No electricity, really equaled, no bother.  We grilled hot dogs and biscuits on the grill and my most important fridge items found a new home in the freezer.  Brian and Will teased me a little bit about the possibility of marauders as we enjoyed our meal around a table on the patio.

Dusk came and went leaving us with a darkened sky.  More stars than I have seen since living in San Diego started peaking their heads, welcoming the evening and a cool breeze.  That’s when my mind started whirring.  Our gas and electric company told us to initiate our family emergency plans and prepare for several days without electricity.  My phone service went down and in a quick moment I was reminded of a harsh truth.  I am too comfortable and too dependent on all the wonderful technology we have been blessed with.  I have gotten lax, eating more from my food storage lately than I have put in.  I could beef up my water supply and why did I use up my emergency cash on random “here and there” errands?  Where is my constant vigilance?  Can we say, parable of the 10 virgins?!

Honestly, even eating things down a bit, I knew we could eat for weeks comfortably and even months if needs be, but that is when I had the thought, “At what point do we need to pack up and get outta Dodge?”  How far could I go?  They were saying they thought the blackout went up through LA and possibly as far as Phoenix(In reality…only to Yuma).  Where would we go?  Does Vegas have power?  Even if we had to leave, with both cars having full tanks of gas, we couldn’t make it to Vegas…close, but not all the way.  Since this isn’t horseshoes or hand grenades I stewed for a little bit and pondered some more.  If ye shall prepare, ye shall not fear and preparing is an ongoing task.  I’ve learned, I’ve remembered and I don’t intend to forget.  I’m grateful for the short mock disaster that only lasted part of one day and into the next.  After this moment passed, I was good to go and that’s when things got a little crazy!…after the kids were in bed of course.

The aliens came for Brian.

Apparently I was too much to handle.

No room for Will either…

10p15 is Not a New Type of Star Wars Robot

Clearly, I spoke too soon…Dysmorphology was able to round up some literature for me on Chromosome 10p deletion.

Here is some background in case your were wondering.  From my understanding, there are just over 50 people who have been recorded in the world as having a chromosome 10p deletion of some kind.  25 have been published.  A “pure” 10p15 deletion is what they say Gracie has.  P stands for “petite,” meaning the short arm of the chromosome holds the deletion.  There are 5 recorded cases.  So at this point we realize that it is so rare that any findings may or may not end up symptomatic for Gracie.  The scary part for me is that she fits so perfectly into the symptoms so far.

Let’s talk symptoms:  low birth weight, difficulty feeding, hypotonia(low tone muscles), plagiocephaly, delayed baby milestones:  rolling over at 8-10 months(Gracie is rolling very well in one direction.  She gets stuck under the piano bench on a daily basis), sitting 10- 18 months(if we prop her right we can get her sitting for 5-15 seconds…wahoo), walking at 2 years, first word at 3-4 years old(This is like Annie finally saying mom or dad, right now.  I can’t even imagine).  As a result, sign language and use of pictures is a recommended means of communication until language begins.

Heart problems, deafness, a thyroid problems are possible symptoms, but haven’t been seen in the “pure” 15 kids so my fingers are crossed.

The children’s learning tends to be delayed by about 18 months.  Seizures happened in half of the children, but could be controlled with medication. Kidneys and urinary tract usually have to be checked because the children’s kidneys are small, missing, or duplex.  They worry about renal failure.  Only some of the kids needed transplants, others just needed monitoring.  The oldest kid they have on file with this deletion is 17 years old.  I’m just hoping that a lot of fully functioning adults out there have it and they have never been tested.  It was this information that finally had me pushed to the edge.  Luckily, Will was there to scoop me up and put me back together.  It’s amazing how wonderful a hug can be!

Now you know way more than you would ever want to know about a congenital disorder that no one has ever heard of .  We aren’t overwhelmed by it all.  We are just now fully aware of the possibilities we face.  As a result, we are hoping to enjoy our family as much as possible…to enjoy Grace, Annie and Hudson.  Whether for 17 or 70 years I want a close, loving relationship with our family.  What a wonderful blessing all of this has been.  I feel my Father in Heaven gently pushing our family together while lifting the burden.  Most days I feel no burden at all.  It’s quite a humbling experience.  Times like this just remind me how unworthy I am to receive the blessings I get and how deeply grateful I am for them!

Brothers…

After a girl is grown, her little brothers – now her protectors – seem like big brothers.  ~Terri Guillemets

Heads or Tails

Do you ever feel like you’re being stalked by a tiger?  No?  I do at times.  He’s just patiently waiting to take me down…a good, solid lunge to the throat.

I feel like life is one of those heads vs. tails scenarios in the truest sense.  Lucky for me, the outcome isn’t dictated by a flip of the coin.  Either way, I prefer the head.  If I go down, I want to go down fighting.  I want to embrace life, tackling it head on.  Those who take the tail will never know what hit them…just a thought…

I’ll Take the Challenge Head on…

to prevent being kicked in the rear by it!

I had one of those days recently that felt like the very fabric of my soul was tearing.  It hurts to grow, but I’m truly grateful for the opportunity!  I have to remind myself of that on a daily basis – I have been given the life that allows me to yield the most growth should I choose…and grow I shall.