I have a chronic, life shortening illness. Some days I am aware of that. Other days it’s not at the forefront and I move along. I always put life first. I always live. Long walks along the beach in the freezing weather with my Nitza and Alejandro and two silly fluffy dogs taking in the salty air and their presence. Time stands still. I breathe THAT moment in as long as I can because life is truly many of THOSE moments.

My days are hard when my pancreas decides its time to not work. I throw up sometimes upward of 20 times a day. I turn funny colors like yellow  and super gray. My sugars range from 35-200. Thank you pancreas.  I take it in stride and put one foot in front of the other determined to savor each moment I have with these beautiful people.

I have a best friend. She is currently living with us and days are often filled with silly shenanigans. I will always savor family dinners when Mel HAS to taste it first. I can tell her anything and she is the positive to my sometimes frightened.

I, as a 37 year old woman, with a support system of people who would do anything for me, can walk this path not knowing what’s next. J tube, TPN, another ERCP, inpatient looming, but I have a child. He is almost 7. He is super sensitive, and too intelligent for his own good at times. He cuddles a lot and really cares about things in the world.

Three nights ago he asked me if I was going to die.  I told him very carefully that we all were (he knows this) and that we just don’t know when God is going to call us home. He brought up Michael and how when Michael died we are all still very sad. I told him that it means the person who has gone to God was really meaningful to a lot of people and that it is ok to miss them and think about them and talk about them.  A few hours later that night I was sick in the master bathroom off our bedroom, which is separated by his bedroom by a long closet. I have perfected the art of getting sick. I can barely make a sound. He somehow heard me and spun into a panic. Nitza calmed him down.

That for me is the pain of living with a chronic illness. It’s the look on Nitza and Ale and Mel’s face. Its the pain and the fear at times… the unknowing and the love.

Yesterday Ale did tell me that when I do go to heaven it will be golden and shimmering and the most beautiful place.  I told him that it wouldn’t be for a long time. He hugged me and smiled.

This week we are in Maine. We are building legos, watching movies, walking the beach and just taking some time out for us. Our family. The three of us and the fluffy dogs… and I feel so much peace.

Peaceful wishes and a Happy Thanksgiving.

Two Monday’s ago I went to see my GI doctor due to vomiting, dehydration and abdominal pain. He looked at me, pressed my abdomen and told me he was admitting me. That was unplanned.

I was wearing shorts and a t shirt because it was still summer. It was 80 degrees.  The days rolled on and it was a lot of this:

and a bit of this:
and a lot of this:

and an ERCP to confirm a stenosed common bile duct and pancreatic duct (again) so they cut what they could (not much left) and stretched and stented them. I went 8 months between the last procedure and this one.

We’ll leave stents in for 5 weeks. Liver and pancreatic bloodwork weekly. X Ray every 2 weeks and a take it easy for a while recovery.

and I walked outside upon discharge and IT WAS FALL!!! In the blink of an eye.

So today I go to watch my boy play soccer with jeans on and a long sleeved button down shirt. (Not summer clothing.)

and gratitude for what I have in my heart with my tiny family and my fluffy dogs has resonated… in a deeper way.

I am the most fortunate woman in that I have the honor and pleasure of living with this little boy Alejandro.  I love him… with all of my being. I look at him and glow. I tell him how much I love him thirteen million times a day. Today I picked him up at school and had the ever-so-coveted Super Mario 2 for 3DS waiting for him. He was happy, and he’s almost 7 (January 1st) and what made him happier was that there was Key Lime Pie waiting for him for dessert, because for Ale it is about the thoughtful things.

After I made him dinner we played 1/2 hr of Super Mario on Wii and Nitza joined in and we made a silly team cheer and it was another day in the life.

To experience the innocence and wonder of a child is difficult to capture in words, but there is something so truly magical about it. Alejandro has changed me… I am better for him. I know Goodnight Moon by heart (of course he is “too old that book now”), and I have come to understand the importance of the details. Life is about those details…

I feel particularly grateful today that this skinny, tall almost 7 year old is cuddled up next to me.

This pancreatitis isn’t fantastic.  It’s lurking and wreaking havoc on my body and my psyche.  It’s hard to pull myself up by the boot straps when my abdomen is in pain and I am puking like mad. Not the recipe for a great day, however I do understand that it could be a hell of a lot worse.

I went to target to get some ensure and gatorade amongst other unessential things that I always seem to happen by whilst at Target and it was crazy in there. I mean go down the cleaning supply aisle (which I cannot stand the smell of) to avoid screeching children.  They were everywhere. In every aisle. Screaming.

Welcome to back to school shopping no taxes week in Connecticut.

Wow.

A funny little thing happened though. As I whizzed in and out (ok, I didn’t whiz around, I had a broken carriage) of mother’s and children and realized exactly how overwhelmed I was… it hit me that my outside matched my inside.

M A D N E S S.

Right now it’s madness