In a funk...

Tripp had a horrible day.  Talk about a roller coaster ride.  I just never know how he's going to be when he wakes up.  Life is just like one big guessing game.  It's like we are starting back at square one.  He barely opened his eyes today, they are red and he constantly tries to rub them all day.  I feel HORRIBLE for him. I don't know what is bothering him.  Is it just the eyes?  Is it his stomach... because he is restless and can't get comfortable and passing gas all the time?  And he has been having trouble breathing the past couple of days.  I don't know if he has a cold or not.  OR it's just a combination of them all... which just really really stinks.  I don't know... I just wonder how much longer he can go on like this.  When he gets to where he can't breathe and his eyes are bothering him so bad and he's so upset, I put my hand on his little heart and it's almost pounding out of his chest.  I mean, he's been struggling to get the air in since he was born.  When will he tire out?  When will he have just had enough.  Poor Man.  It just breaks my heart.  When there is nothing you can do as his Mommy, it totally breaks your heart.  Just when I thought his eyes were healing and things were going to turn around for a while, things get worse... but I guess I should just be used to it by now.  Nothing can ever go smoothly.  When will he catch a break?  When will we have a solid week or normalcy (well, normalcy for US).  It's just so hard.  I am physically, mentally, emotionally, and TOTALLY exhausted.  My days these past 2 weeks have consisted of sitting in a dark house watching my precious little man throw himself back in pain.  He just can't get comfortable lately.  He absolutely positively HATES eye drops... and I have to put them in as often as possible, so that makes me feel horrible.  I'm the one that is cleaning up scabs and wounds, wiping the "burning" poopoo off of his RAW behind while he screams (screams meaning squeaks loud through the trach), trying to lube the sores that get stuck on his gauze wrap so that I get them "unstuck" while he screams and stuff starts bleeding... I am always the one that causes him the pain.  And don't get me wrong, I know that he loves me and that he knows that I love him, but it is killing me inside.  It is mentally tearing me apart.  It's so hard to understand what I go through MENTALLY (not even physically) on a daily basis.  I am a mother.  I carried my baby for 9 months and I gave birth to him.  Since I was about 12 years old, I've dreamed of the day that I would have a baby.  But never in my wildest dreams would I have pictured this.  It is heart wrenching to watch your own flesh and blood suffer on a daily basis.  He is MY baby... I'm supposed to be able to help him and comfort him and make it all better.  And there is no way that I could ever explain to you how it feels not to be able to make things better... not to be able to fix things... not to be able to take the pain away.  It hurts.  It kills me.   How do you prepare yourself for something like this?  You can't, I know.  I just don't think people realize how much Tripp has gone through in the past 10 months.  We spent about 1/3 of his life in the hospital, 1/3 in doctors offices, and the other 1/3 wondering if we should take him to the doctor or bring him into the hospital.  It has been problem after problem after problem.  It's just so hard to see the light at the end of the tunnel.  I'm not being negative, just trying to be honest and tell you how I'm feeling.  I guess you could safely say that I'm in a FUNK.  Big Time.  I guess when he feels good, I feel good.  But when he feels bad, I get so upset.  It is SO hard.  It is so unfair for him.  He has never lived one day without pain or ever lived one day where he wasn't actually TRYING to breathe.  Can you imagine?  I have a hang nail right now and it's infected and draining.  But his fingernails are missing... MISSING!!  There is just raw, bloody skin there.  How bad must that hurt.  And I know, we all say... he just has a high pain tolerance... he's used to it... he doesn't know any different.  Well so what.  It still hurts and he still cries when he hits them and he still feels pain.  I just want to cry for a whole day.  I don't want a day to sleep... I don't want a day to get out and go shopping... I don't want a vacation.  I just want a day where I can just cry all day and get it all out.  I'm so angry.  I'm so sad.  I'm so so just over it.  I want him better, I want him pain-free, and I want him to live a normal healthy life.  And it breaks my heart that he never will.  And I know all I can do is keep pushing on, keep a smile on my face, and keep being positive.  I just pray I can keep going.