Many have asked after watching the video how I can stay calm and not collapse beside Samuel crying.     I thought of one journal entry from last year at this time, some of you might remember it.  I wrote it several weeks after Samuel's surgery to reconnect his gut.   It sickens me to reread this and know that I can still fully relate to it today.   I never thought that a full year later things would still be so wrong.

I need a break, but there isn't one.

Don't get me wrong, there are a lot of things "broken," but the kind of break I am looking for is one where you push a button and make it all go away.  Like mute on your remote, you push it, all sound disappears.  I want all the painful screaming to disappear.  Is 24 hours of silence too much to ask for?   I would like to hear myself think.  Daily there is a race going on inside my head.  A race of thoughts, to do lists, and a lot of things that come to the fore front of my mind for a second and are then lost in the screaming around me.  I never know what day it is, or where I left the last glass of water I poured myself.  I should write my to do list down but when I am near paper, I forget.  I want 24 hours alone with my own thoughts, to sort them out, to sort this ALL out.

I need a break, but there isn't one.

When does all the suffering finally stop?  When do we exit this Black Hole we are living in?  When does the torment that has taken place over the last 17 months end?  When does the roller coaster stop?

I remember back in the days of amusement parks and childhood, I never wanted the roller coaster to end.  And it always did, too early.   Now, I would give anything to get off and it just keeps going and going and going, like the Energizer Bunny.   You see the station, you slow down, you feel hopeful,  but then someone kicks it into high gear and you are off again.  The screaming, the flailing of arms, the feeling like you might really throw up this time from it all.  When do we get off?  Do we ever get off?

I need a break, but there isn't one.

You would think that at night, when your kids go to bed, then you would have a break.  But no, by then, you are so tired, wired, stressed out, and pissed off at it all, there is no relaxation.  And unless a lot of drugs are involved, there is no sleep for the tormented.  He wakes still, several times a night.  He cries.  He ONLY wants mama.  I go to bed, I hear screaming, I wake up to screaming, I go through the entire day, with screaming.  I want to scream.  I want to kick the walls, I want to drive it away with my fists.  But none of it helps.   I wake up to  a new day, but it is the same day, over and over again.  It might start off well, but it ends the same.  Screaming, torture and lots and lots of begging for it all to end.  Both by him to me, and by me to God.  When does it end?  Are we the forgotten ones tonight?  Another sleepless night is before us, I feel it.  One word sums it all up, ridiculous!

I need a break, but there isn't one.

No one should have to work under these circumstances.  It is cruelly unfair to have a child who needs you so much and not be able to make ends meet.  I already have a full time job, the baby who seems to need me every five minutes today   I cannot believe I am living through this.  I cannot believe all we have done, and all we still have to do.  I do more than a person should have to in one day and it still is not enough.  It seems a futile struggle to keep everything together.    I feel like I get up each morning, take a deep breathe, dive into the pool and swim to the other end as fast as I can because I cannot take another breath until I reach the other end.  I get there, and I am gasping.   I get there, and nothing has changed.  I need two or three of me to share the burden.  I think of swimming laps often because I used to do this exact thing, dive in, swim 25 meters, under water, no breath, for several laps at the beginning of swim practice in high school.   Back then, I thought it was fun, invigorating and a challenge to see how many I could do.  I always did it first thing because you needed to do it when you were not physically tired.  To date, I swim more laps now than I ever did then.  I don't find them fun or invigorating.  Challenging, yes.  And I don't always get to do them with a full nights rest.  Makes it so much more difficult.

I need a break, but there isn't one.

There is no procrastination in this household.  Procrastination only means you will stay up later getting it done.   And there is a lot to do.  Every day.  I hear people complain about their lives every day.  Do they not realize that most of their problems stem from the choices they made?  Many can change their lives at any time, they just choose not to.  No one would choose what we have endured.   No one can ever plan for cancer to strike.   Most would never believe it had we not the pictures to show for it.  I make choices every day, choices to try to make things better for everyone.  Choices that don't always pan out, but not due to poor planning, or because I lacked the ability to see what was needed at the time, vs frivolous at the time.  Choices that don't always work because no matter what, there are some things that you cannot always win against, poison induced ruined body parts being one of them.  Or so it seems today.  This is 6 weeks past, and in some ways, it feels like very little progress has been made.

I need a break, but there isn't one.

When does my heart get a break, a chance to recover?  The thoughts of all we have been through in the past 17 months only scratch the surface of my thoughts   The nightmare this has been is so overwhelming that it needs to be stomped out as suddenly as it surfaced.  Some day, I will have to rectify this.  How many years from now will that be?

I need a break, but there isn't one.

I just want it all to stop.  I want to hear my name called only for good things, not painful things.  I want my baby to stop asking me to help him when I obviously have tried everything, and cannot.  This baby told me that I am his best friend.  He knows all to well who takes care of him and when I say 24/7, I mean literally that.   How much should a child have to bear?  How much must a mother witness?

I need a break, but there isn't one.  The torture continues.....Samuel needs a break.  We all do.

How do I keep my cool?  I don't.  Inside I am screaming.   But, unfortunately after a year of this now, it has just become the new normal and I have a job to do.  I have to keep him going...to the bathroom, and keep him clean.  Unfortunately, the poop has to come out and therein lies the whole problem and the images such as I have shared will haunt me for years to come.  Kaysha and Daniel think this is normal.  Anna doesn't know any better.  She walks around now saying her butt hurts and SHE wants to go the the butt doctor.   I stay up late and drown my sorrows in other people who have sorrows worse than ours.  I can feel their pain, won't allow myself to fully feel ours.   There has been so much I am afraid that if I allow myself to "go there" I might never come back and Samuel needs me.  I need him.    I thank God that in all we have to deal with, we are not dealing with cancer too.  I thank God for Samuel's life and remind Him of His promise to restore him.   I think of Wendy M. reminding me that our reward is in heaven.  I pray Samuel's reward is great to compensate for all the suffering he has done on this earth to date.  I pray that in the grand scheme of things Samuel has made a difference for someone else.   I rarely cry anymore for us.  I cry for others, but for our situation, I think I am numb to it all.  We have been through so much, overcome so much, yet here we are a year later and I can write the same journal entries again and mean it.   I pray that next year I will look back and this will all be behind us.  I pray that someday I can ride off into the sunset on Bud, and NEVER look back.  I pray that someday my heart heal and all the emotions I don't have time to have will come and go because all this is done.   I get up and go to bed and many times the day feels the same.  I hate it.  I often have that feeling I would have while stuck in the hospital....where I just want to jump outside my physical body and run far away.  I wanted to jump out of the hospital window several times just to get away from it.  Not because I wanted to die, but because I was so stuck in the situation and figured the only way out of it was a dramatic one.  So I thought of something I would never do over and over and my body would feel so ready to jump and my head knew all along that I could not go anywhere.   I wish for that escape today knowing I cannot go anywhere, cannot change anything.  Hospital felt like jail so many times and so does this life.   No matter how much you want out, you have to do your time.  Now it does feel like jail.  We have attorneys who advise us we have not a leg to stand on.  And timewise, it would not matter much with the way the system works.  And the clincher is that if Samuel were doing fine, then it would not be a big deal to wait.  If he did not have to suffer the agony of pooping so much every day, we would not feel so crushed.   They are sorry, but they cannot do anything.  Well like most instances, saying your are sorry does not help.  I tell Samuel I am sorry every day and it has not helped at all.   Truth be told, I am angry.  Maybe that is why I really wanted to jump out of those hospital windows, because I felt so angry that I wanted to shatter something.   It was hard to live with all that pent up anger and no outlet for it.  So I imagined.   I look forward to the day when we all have normal emotions, not numbness.