When we first took Kai off chemo in September I remember feeling so scared that my whole world would disappear. I felt like I would never see all of these people again, his nurses and therapists, our chemo family, even our typical mom/ baby friends. After two years of being Kai’s mom, a chemo mom, a mom to a child with disabilities, who would I be once he was gone? I remember feeling stuck in between chemo world and bereavement and I really wasn’t sure where I belonged. After talking to our many social workers and psychiatrist ( yes when you have a kid with a brain tumor there are lots of these people around) I was put in contact with some great moms who were willing to talk to me about their loss. I also contacted Why Me to ask if I could sit in on their bereavement group, Circle of Healing.
Dave and Mark, the facilitators, spent hours talking to me asking about our situation, about Kai and our journey. Why I wanted to come to group now, when Kai is still alive. Apparently one had ever asked to do this before.
I explained my position. I had so many questions; How do you know when It’s time to let go? What is it like in the end? Did you bury or cremate? What do you do with all of their things? How do you ever make relationships with people who didn’t know your baby??? Do you ever really move on??.
By September I knew I would be part of this group someday and I just wanted to know it would be okay. I wanted to know that these people, the parents who have lost their kids, would become my friends just like the parents in the Parent to Parent group have. I wanted to know I would still have somewhere to go. Somewhere where people would get it.
Thankfully the group warmly welcomed me in that night. With all of the questions and emotions boiling inside me I did my best to just sit and listen. I knew I couldn’t ask all of these things to parents who have actually had to watch their kids die. As much as I knew it was coming for us, I still had no idea what it would really feel like. I didn’t want to say the wrong thing. I didn’t want them to resent me for being there while Kai was still alive. So I just sat and listened. I learned a lot. I cried for their losses. I made friends.
I learned that the end is different for everyone. There were some who went incredibly fast. As I heard those stories I thought for a moment how terrible that would be. How much harder it must be to not have any time to prepare. Then I would hear of someone who struggled for months watching their child slip away and I realized this part of the journey is just like the rest. It’s just like diagnosis or treatment, you deal with whats in front of you. Some situations sound worse and some sound better but its all a matter of perspective. In reality, they all suck! It’s all cancer. It’s all chemo and dying leads to death no matter how fast or slow it happens. You can never prepare for the loss of your child, so why was I trying to??
By the end of the night I felt a little guilty for being there. I knew as much as we were no longer in chemo world, I was also so far from the world I would have to live after loss. I had no idea of the pain and struggles. I knew I would someday, and probably sooner than later, but that day I was still an outsider. I felt guilty for not pushing more for Kai. I felt like maybe I wasn’t doing enough. I felt guilty for being so sure he would not make it. For accepting it. I sat in that room full of parents who would give anything for one more minute with their children and here I was trying to prepare for my life without Kai, while he was still here…
At the end of the meeting they invited me to come back next month and my heart sank. I thought to myself, Oh no, this was a one time thing….I don’t really belong here yet. Next month I will go back to my Parent meeting, the one for parents of kids fighting cancer….right???
I didn’t know what to say. I thanked them all for letting me hear their stories. I thanked them for welcoming me. I thanked them for showing me that, someday, I would have a place to go if Kai doesn’t make it. My head had been preparing me for the eventual loss of Kai, but that night my heart was protesting. Sending out the little fighter cell through my body, trying to convince me that maybe it doesn’t have to be this way.
I wanted to say ‘thank you for not hating me for sitting here in front of you, knowing my baby is tucked in his crib at home.’ I wanted to say I’m sorry. I wanted to say No I won’t be back next month, I’m not ready.
On the drive home that night I realized that I really wanted them to tell me it would be okay if Kai dies. That I would somehow move on and have a whole new life after this, as the people of the world (the ones who have not lost their children) keep telling me. That I will meet people after Kai, who will want to know of him, ask of him, understand my loss. That he will go peacefully and that I will know when to let go.
But I didn’t hear any of that that night. If anything, most of my fears were confirmed. People will say the wrong thing. People will avoid the fact that Kai ever existed. My life will never be the same. 5, 10, 20 years later the loss of Kai will still be a part of my daily life. That night, all of that terrified me. I was not ready for that world. I was sure I was never going back, but had so much anxiety of how to tell them. They were great people. People that shared their lives with me. People I now cared about. People I could be friends with…someday.
Of course I never made it to the meeting in November because we were in the hospital. Kai was dying. Slowly.
The next meeting I would go to would in fact be Circle Of Healing, and I would no longer be an outsider.
Last night I joined my new friends at the Circle of Healing parent meeting. Although I walked away from the meeting in October overwhelmed, confused, guilty, and scared, I am so thankful I had the opportunity to meet these people before last night. I don’t think I would have been able to go to group last night had I not been there that night in october. I will always be so grateful to all of them for letting me in that day. I have thought of each and every one of them and their children so many times since that day. When Kai was in the hospital dying I knew he would be greeted by their children and the children of the other angle moms I have met in the past fee months and that idd give me comfort. All week I felt some calm and relief knowing on Wednesday night, previously chemo day, I would have a place to go where people get it. I would be surrounded by people I could lean on, learn from, cry with and no longer be afraid of, because this is now my life too.
It was a good night. A friend from the Parent to Parent group came to support me, which was amazing. The parents from Circle of Healing group welcomed me back. The topic this month was dealing with the holidays. We talked about Christmas and how hard it can be. We talked of ways we can support each other and take care of our needs. There were people there who lost their child 20 years ago, and Christmas is still hard. There were several of us, four to be exact, whom this will be our first Christmas without our little ones. We gave each other advice. We talked of our fears and joys. The emptiness and the signs we see, or hope to see, that show they are still with us. I asked questions. My fears are my reality now, but it is not as scary as i thought it would be thanks to all of these people.
At the end of the night we were each given a gold ribbon with our kids name on it to hang on the Why Me angle tree. I also added this our 1000 paper crane ornament ( this years limited edition hand made ornament to fund childhood cancer research!) on the tree under Kai’s ribbon.