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.