Ok

Today is a day that will never leave me.  One year ago I told my best friend it was time for him to rest.  I told the father of my child I would watch over our daughter and take care of her as long as I lived.  I told my husband I would carry our love with me to help me get through every day after.  I told the most significant person in my life that I had chosen and that had chosen me…I told him it was ok.  That I would be ok.

Here I am a year later.  Sometimes I believe it, but I am not the same; I am not ok.  I spent some time looking back on pictures of Evan and Addi and I from the time when we first moved to Mooresville and he started school: long before he began to fall ill again and we found out about his glioblastoma.  It was such a beautiful life and those memories are so precious.  I will cling to them when those memories filled with sorrow creep up on me.  I will try to.  But, most of the time I feel like I am a completely different person; I feel like there is a front that everyone sees that shows who I was that shows I am ok.  But I’m not.  It feels like that life was never mine because it was gone so quickly.  So much has happened in the last year and a half; sometimes it is difficult to remember those good times.

Here it is a year later.  Sometimes I believe I am ok, but I am not the same and I never will be and that is what is truly ok.  Evan changed me in so many ways.  He changed my life.  He made it have so much more meaning and I miss the hell out of him.  I always will.  And THAT is ok because he is worth it.  All of the pain I feel has a silver lining because feeling this way means I loved someone so passionately and so completely.

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Plans never go as planned…

I never thought at 27 I would have to plan my husband’s celebration of life. I put off doing a funeral for a number of reasons.  Number 1 being that I didn’t want to have a funeral for Evan.  He was such a unique and amazing man I didn’t want anyone, myself especially, to feel like they are saying goodbye.  I’m not naive enough to think that by allowing myself to put off having a service of any kind for him, I haven’t faced the reality that he is gone.  You see, I face that reality every morning when I wake up and he isn’t beside me and when Addi is crying for her daddy and when I go to pick up my phone to tell him about my day or ask him a question that only he would know and after Addi falls asleep and the house is quiet and I am alone.  You see, this happens daily; multiple times a day the reality hits me.

A celebration of life will allow me to record stories and memories of Evan and put them together for Addi. I have just waited to feel like I can deal with seeing everyone and hearing all of their stories.  I am worried it will feel like the only time I will see them and hear them and I don’t want that.  I want to talk about Evan daily with multiple people.  I want to see his friends and family; I just don’t want to do it without Evan.  It is inevitable. It is out of my control. But, I want to honor him and I want others to do so as well. So, it is time to start putting some things together. I want to have a celebration in Washington, Maine and North Carolina. He had friends and family in each and I want everyone to meet Addison. I want to get together with everyone to honor my husband, who was much more than just that. Details will come and I am sure I will write about the process as it develops. I felt like if I write down that I am going to start planning it I will have to start planning it. So, here it is…

Losing my sh**

I had a conversation earlier with a dear friend and we discussed losing one’s shit. Not literally. Figuratively, although the former probably entails some interesting aspects. It got me thinking about times I’ve broken down. Now, I’m sure my mom or sister would say other wise, but it’s been a while considering everything that’s going on. I mean there are days when I need a few minutes to gather myself and my thoughts, but a serious breakdown is few and far between in my calendar. Ok, ok, I might have lost it over the phone with my sister in July after doing too much research, but I had to get it out so I just called her and let it pour. But allow me to explain why this is an exception and not a habit…

In my younger years I was certainly dramatic. I was the youngest child and one of the charismatic members among my friends. I surrounded myself with attention seekers, class clowns and my wrongfully outcasted peers. When something happened I generally reacted quickly and sometimes quite irrationally.

Call it growing up or falling in love or whatever you may, but when I met Evan that changed. As odd as it seems everything slowed down while our relationship was forming. I began to think more rationally even as my heart was behaving recklessly. Evan and I are very similar. I was used to being dramatic, but so was Evan and I toned my theatrics down because it’s hard for a relationship to survive when two explosions are likely to go off. I changed. Like I said, could be growing up, but I think it’s because I love this man so much that I wanted to do (and still do) whatever it took to make it work. So I stopped losing my shit.

When I got pregnant we were hit with some heavy stuff. I was forced to keep it together because I was pregnant. I didn’t want my baby to get anxious because I wasn’t taking care of myself or because she was feeding off my vibes. Pregnancy during ER visits and watching Evan go through radiation treatment has seriously shaped how I handle things now. If I lose my shit, I feel it all goes to shit. When Evan and I first started seeing one another I changed. He changed me. This situation has changed us, but the important thing is that we are still us and we are together through this, wherever it takes us.
So for now, and as long as it’s healthy, I will not lose my shit. Figuratively, and hopefully literally.

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We’ve got the late night munchies…

I just got to see Evan for the first time since surgery. We had to wait until 3 for surgery. His surgery was about three hours, maybe a bit more before I got to speak with the surgeon.
Everything went as well as they could. We all know Evan is a unique case and this is no exception. It is rare to have hydrocephalus when a tumor is present but not blocking fluid movement. The surgeon can’t explain why this developed, but he believes it was necessary.
Nonetheless, Evan is feeling some relief behind his eyes already because there is no active pressure there. His vision has already improved a little and he is in good spirits. We just ordered off the late night menu and should be munching down by 11:15. He has pain around the two incision sights-one on the back right of his skull and one in his abdomen. He just left for an x-Ray to verify the shunt is in the proper place and working. If all goes well we will be out of here tomorrow.
What this means for chemo: Evan was scheduled to begin chemo on August 10th. Typically surgery would push it back, but the doctors don’t want to wait too long so if everything is healing well he should be able to start on the original date. He will have to come back before the start date to verify all of this of course, but it seems on track still.
I must say it touches my heart to have so many people out there supporting us through this and sending their good vibes and sharing our story. I want Addi to read this one day and see how tough her Mom and Dad are and how many people out there care and can be compassionate. Thank you from the bottom of our hearts.

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