Talking candid...if we must!

The last few weeks have been hard, emotionally and mentally!  About a week and a half ago we went to Primary Children's for Owen's yearly appointments.  He doesn't like going to say the least, and the first one we saw was even a favorite.  She has been an angel for our family, but Owen was not happy, maybe even throwing a little fit ;) (I don't blame him).  The doctor said "okay things don't look great let's talk candid if we can".  Lenn and I just looked at each other and wanted to make a mad dash for the door.  Since we couldn't leave Owen and the doctor was in front of the door we had to stay!
I turned to Owen for strength and he was still so upset.  He was red faced, even running a slight temperature, clammy and COLD!  I could see where she was coming from but I like to speak candidly with close family and friends usually over the phone or computer where I can hide a little.  Some people like to wear it out on their sleeves but I would rather cry in my own little corner all by myself.  We talked for a few minutes about Owen's future and how he might have days, weeks and maybe months.  We have heard this over the last 2-3 years and he is still holding his own.  Although I do believe his little body has done about all it can.
After she asked us to speak 'reality' we wondered if we were putting on too much of a 'public mask,' that others really thought we were in lala land and that everything is grand! Oh dear no!  Maybe before Landry came and passed away, but since then we KNOW the reality we are facing with Owen.  We don't love it but we can't change it.
We are always asked 'how is Owen?'. Our reply is 'good'.  We aren't lying to you, we just don't want to explain the whole situation each and every time, so please forgive us.  He is as good as he can be and we choose to look for the positive rather than the doom and gloom.  But here is our reality as we know it:

Owen will pass away one day, long before we could ever be ready!  We feel each day is a day on loan to us.  There is already a headstone in place.  I don't love the reality of that, but I do love the headstone.  It is perfect for our boys and having them together helps in a way, I guess.  Knowing that they are brothers and they will be together.

Owen is thin!  Oh my goodness he gives new definition to skin and bones.  But there is nothing we can do about it.  We have tried numerous times to up his calories but his little body just can't tolerate it.  We are giving him all that he can tolerate and still be happy.  He is 5 years old and weighs as much as he did at 9 1/2 months old.  Yes, that one hurts!!  Thank heavens he was a chunky baby!
 

He is happy!  He still smiles and gives us looks with his beautiful eyes.  We feel like as long as he is comfortable and smiling we are okay.  If he does become uncomfortable and miserable then we will have to muster the strength to take action and help him on his way to heaven.
We pray that it will not come to that.  We hope that when his mission here on Earth is done that Heavenly Father will take him on his own without us having to make that horrible decision that so many loving parents have to make.
There is the harsh reality.  Maybe I keep it to myself because it is so emotionally draining to think about losing my son all the time.  I am trying to enjoy the little things and I remember hearing a mom once say, 'I have all the time in the world to cry after my baby dies'.  I have shed my fair share of tears but I'm trying to be happy while he is here.

After his fire truck video on his ipad and at the end of all the appointments this is what he looked like, much better!  I sent it to his doctor and she was relieved to see his smile back on his face.
For now we will enjoy each of these smiles and try to feel his special spirit that he brings to our home.  We love our little Owen and can't imagine the day when he is no longer here with us. 
We realize things are going down hill for Owen but we are taking it a day at a time and that is about all we can do right now.

Thank you for all your love, support and concern.