The three "G"s - Grief, Guilt, Germany

I am struggling with the three "G"s - Grief, Guilt, and Germany.

Joana has been gone over one year. More than 13 months. And things are not any better. I miss her so, so much....it's hard to put into words how it feels, how much it hurts, how it consumes every second of my day.

On the outside, I look like I am just fine. I go to work, take care of the kids, keep up on the laundry, and cook dinner on most nights. But honestly, I don't want to do any of those things. I am "functioning", but I am also pretending and acting each and every day. And it is exhausting.

Often, I feel guilty for feeling the way I do. I know there are parents out there who have lost all of their children, and I "only" lost one. But that one loss is just so overwhelming and the sadness so all-consuming... It would be empowering to be given permission to grieve for more than just a few months.

The last "G" is Germany... The last time we visited was 6 1/2 years ago, just before Joana's diagnosis. Joana absolutely LOVED Germany - the language, the culture, the cities...and she always talked about wanting to go back to visit. We never did...and that absolutely breaks my heart. Last September, when we were told that Joana's tumor was incurable, I asked if we could travel to Germany, but the answer was a definite no.

I had many chances to take Joana back to Germany, but I never did...and I feel incredibly burdened and guilty about that. And than, all of a sudden, it was too late...

Now Chris, David and Anya all want to go next year to visit Oma, and I am in a panic about it....and no one understands why. How can I go to Germany and be happy and excited about it when I know that that's the one place Joana wanted to visit again? Everyone tells me that Joana would want us to go, and that it's not fair towards David and Anya if I refuse to go. And I agree with both of those things. I want to be able to "suck it up" and go for their sake...but even researching plane tickets throws me in a panic. If merely visiting traveling websites gives me symptoms of a panic attack, how would I possibly be able to get on a plane next year?

So yes, I agree that I should not deprive the kids of visiting Germany. But at what cost?

On the one hand, I think we should not go next year, and maybe I could get some help from a counselor so I could feel better about going the following year.  But on the other hand...what if we don't go and then something happens to my parents or my brother? How would I deal with that guilt?

It feels like it's a no win situation...and I hate that it's turned into this. After all, isn't a vacation supposed to be fun and eagerly anticipated?

Identity Crisis

For over five years, I was Joana’s caregiver.

I had her diagnosis, her treatments, her appointments and long list of doctors memorized. I could tell you each of her medications, the dose she was on, the side effects, and when I needed to get a refill. I knew how to navigate through the MRI viewing software and what to look for on the images. I knew the early signs of Joana’s seizures and what to do if she had one. I had our insurance information memorized, and knew the oncology clinic’s phone number by heart. I even had her main doctor’s cell and pager number so I could call her any time. We saw the same doctors weekly for many months. The hospital felt comfortable, I knew where I was going, I knew the nurses, and I looked forward to be in an environment where “people got it.” I knew our routine – blood draw, doctor, infusion – and found comfort in it. I was doing something to help, I could actively participate in the fight against Joana’s cancer by being her caregiver.

 

Then Joana died, and with it my role as her caregiver and my relationship with so many people that had been a regular part of our lives.

 

Joana’s illness consumed me and my time, and suddenly it was all gone.

 

I had spent a lot of time communicating online with other brain tumor moms, but suddenly I felt like I didn’t fit in anymore because I didn’t have a child with a brain tumor. I went to a fantastic conference in Chicago by the ABTA with Joana three months before she passed away, and we wanted to go every year because it was such a great experience. Well, can’t go there anymore….

 

When your child dies after a long illness, you not only have to live with the loss of your son or daughter, but also with the loss of much of your identity. You lose many, many people in addition to the most precious one - your child.

You have lots of "secondary losses."
 

It is still so hard for me, and I wish more than anything that I could be “Tina, mom of Joana, grade II oligoastrocytoma in the left temporal lobe. Two surgeries, two rounds of radiation, various chemo protocols, but still fighting” again.