As my husband and I try to cope with, understand, truly realize, and attempt to live with the death of our 14-month-old daughter, we both realize that we need help. Our daughter had a very rare and very dangerous brain tumor. We found out about it by accident one day after she bumped her head. Twenty one days later she did not survive the surgery attempting to remove the tumor. Twenty one days. My husband and I are still just trying to understand what happened. We are just barely starting to get a clear picture of her death and understanding all the different things that were a blur at the time. Living with this is overwhelming. We can not do this on our own. We can not live our lives without the support of many different people in many different ways at many different times.
Until very recently I lived every day with what I called the fog. It still comes and goes now and then, but the gaps between have grown, allowing me to understand the fog a little better. When the fog rolls in I am numb. I am robotic. I am tired. All the days blend together. There is no concept of time. It is confusing and scary, but it can be a break from our overwhelming reality.
At first I was in the fog all the time. Then it would roll out for very brief moments. These moments could be joyous or terrifying, but always brief. Having clarity of my life is too much to bear at times. The fog protects me.
My sweet baby girl has been gone for six months now. The fog still comes, but not as often or as blinding. One thing that has become very clear to me is what the support I need looks like, what it feels like, and how I could not survive without it. I could not have predicted from where or in what form this support would come. When the fog is out, I can see more clearly how the different people in my life truly support us and what that really looks like. By looking at the people in my survival toolbox, though they all bring something special, there are some common threads.
#1 Just Listen
Having someone just listen to me, and really just listen feels like a gift. To me, someone who is really listening is not trying to formulate advice or a response while I am talking. They are just listening. They are not trying to decide how they feel about what I am saying while I am talking. They are just listening. They are not responding as if I am asking for advice. They are just listening.
#2 Talk to me Straight
Don’t be afraid to talk to me. Don’t be afraid to upset me. Don’t be afraid to say the wrong thing. Just talk to me. You can say Bug’s name. I want you to talk about her. You can talk about the pain you feel because we lost her. I want to know how she touched your life. You can talk to me about how you cope with your grief. I want to know that you are taking care of yourself because I care about you. You don’t have to dance around the subject of my daughter or her death. These are always with me and always on my mind. You are not bringing it up. It’s already there, so just talk to me. Unless you’re an asshole, your probably not going to hurt my feelings.
And that’s all.