The toughest question

So, some of this blog is for me, it's a good record of the going ons in our family and it is a little therapeutic.  So, a lot of the time I ignore, or purposefully forget some of the things going on with Emily, I think in some ways I have to in order to get thru everyday life.  Don't get me wrong, her health is really good right now, everything is stable and going smoothly.  Every once in a while the bigger picture hits me.  And for whatever reason Emily has the most questions/concerns after a dentist appointment.  I guess maybe because most doctors are for sick children, and there are plenty of those at our appointments, but the dentist is mostly for "normal" kids.  Maybe Emily feels the most "not normal" then, I don't know.  But anyway, she had a dentist appointment this Monday and afterwards asked a typical question, "why am I different, why did God make me this way, did He know I was going to be this way".  So much pressure, to answer these questions right!  So, I tell Emily that she has a special purpose, she has a job to do, because people pay attention to her, I tell her she is going to teach people something important.  This is aside from my usual answers of "yes God made you just the way you are; He formed you, inside and out, just a certain way; He knew about you long before Daddy and I did, He knows the plans for your life", etc.

So, then after Awanas last night Luke couldn't squeeze the toothpaste out and I asked him if I was going to have to do it for him when he is 80 (because I am trying to teach our children to be problem-solvers).  He asked if I was even going to be around when he is 80, and I said, "probably not, I would be 103". 

Then it came, the question I dread. 
Emily asked, "how long do you think I will live?" 

I don't think she knows that part of being different, I don't think she understands the prognosis (we don't really know for sure either, kids with regular progeria only live until their teens, kids with lipodystrophy can live until 30/40's, we just don't know). 

And in typical Emily fashion, she gets upset and asks, "what if I don't have time to do the job God wants me to do, what if I don't finish".  Thankfully things are moving fast in our house and there is a lot going on at one moment, or I would have lost it.  Lord willing, God will return to earth before we have to say goodbye, and so that is what I tell Emily, "the Bible says He will come like a thief in the night, He may come in two minutes or two weeks or not for many years.  We don't know and we do our best to do the job He wants us to do". 

See, I forget what Emily has to deal with all the time.  Last night, there was a new boy at Awanas and he told Emily that she looked scary. 
Scary. 
Who tells people that!  And how awful must it feel to be told that! 
Emily told me that she just walked away, because he isn't used to her yet, and it's ok. 
It's not ok and it's not fair, but I am thankful that Emily is strong.  She is teaching and we are learning.  She knows she is loved and beautiful.

Earlier in the evening Justin and I and Caleb were at Portillos for our weekly "date night".  There is an older gentleman who works there and always comes to talk to us, because he has a grandson about the same age as Caleb (he tells us the same thing every time).  He has a thick accent and said, "I am not sure how you say this, but this baby happy, that means things happy at home too.  When there is tension at home the baby makes it come out [the baby acts out or shows the tension--he shows us by hand gestures].  You must have a happy house."  It's the second time I have heard that recently.  I am not sure we have a happy house or that we are doing things right.  Everyone is bickering lately, arguing about dumb things.  I have had to apologize many times lately.  We are on top of each other and not at all patient.  But I think that is our goal, to make a happy house, to enjoy the life that God has blessed us with, to use and see His goodness to the fullest.  I am grateful for His new mercies everyday and for His gracious love, how else could we face life!

Enough heavy stuff for today, the sun is shining, hooray!