Groundhog Day

So I haven't actually updated on Tripp in a while, I know.  It's just felt a little like Groundhog Day around here.  Same routine day in and day out.  God Bless my Mother the saint for all the help she is giving me.  I know she's exhausted, too.  And Mrs. Pam who comes almost every morning to help.  I'm blessed to have the help that I have.  It's not so much physical exhaustion- it's complete mental and emotional exhaustion from watching your child in constant pain.  I wake up, fix his breakfast, give his meds, wash blankets and diapers, get him up, change him, rock him while he closes his eyes in pain and scrunches his eyebrows, feed him again, give meds again, wash more blankets and diapers, maybe play a little while if he's up to it, walk outside for about 3 minutes until he wants to come back in because it bothers his eyes, rock some more, feed him again, (throw a 2-3 hour bath session in every other day), give night meds, get ready for bed, get up all through the night to suction and change diapers, then wake up again.  You get the point, right?  Groundhog Day?

Sometimes I feel like he has NO quality of life... and then other times he'll prove me wrong by showing off after bath or something.  It just stinks so bad... I SO wish that he felt a little bit better so that we could take him somewhere (anywhere)- even outside for a while.  It's just completely terrible and heartwrenching to watch- I'll be honest.  His eyes are bad, his mouth his bad... he wants to be held or rocked- that's about it.  So there's just not much to update.

It just seems so unreal to me that EVERY part of the body that could be affected by this disease is affected in my son.  Skin, airway, feeding, mouth, eyes... you name it... he's got it.  Like I keep saying, when does he get to catch a break... just a little one?  Please, God?  please... please :)  OK, so that's not how my daily prayers go... but it can't hurt to beg every now and then.  This morning when I woke up and stared at him asleep for a while like I usually do... he looked SO perfect and SO peaceful.  My morning prayer was this, "Thank you God.  Thank you for this gift.  This little boy has COMPLETELY changed my life.  I trust you.  I trust that you know exactly what you are doing and that you will give me the strength that I need and the patience that I need to be the best Mommy I can be.  Amen."  

I don't want to pretend that I never get ticked off or I never lose my patience... but for some reason, I have this really calming, comforting feeling that God is charge and that all of this is totally out of my hands.  I guess when you find out that "there's nothing else you can do" so many times... you learn to let God take over.  I guess I have the ability to focus more on how great Tripp's reward in heaven will be. But I've got to tell you... I have never loved anyTHING or anyONE in my lifetime as much as I love this little boy.  It just hurts to THINK about how much I love him.  It seems like even if Tripp is feeling bad himself... if he can sense that I'm sad or having a bad day- he will always do something to make me smile.  That's what I love most about him.  He's the coolest, strongest, most handsome little dude I know.   And he's MINE... how cool is that?  Goodnight!

Love,