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. 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.
Keikikai 
After reading your posts I am alwaysin tears I meAn crying so hard my chest hurts…I cry because I want so much for you to have your son with you as he should be…I cry because as I look at my 2 year old son Sleeping how amazing he is And how Kai’s story reminds me everyday to appreciate my children and my life…I cry because I hate cancer and I hope to God my kids never get it but there is so little they know about childhood cancer the risks and early detection…I wonder if it is growing in their little bodies and I cry because I wish there was more they could do for Kai and other kids fighting this beast. After I wipe my tears i get empowered to do more…For one year now literally I have spent most of my spare time raising awareness for pediatric cancer and now more than ever before. I am a volunteer for this amazing powerful grassroots film The Truth 365 that educates the public about pediatric cancer. http://www.youtube.com/watch?v=oljTL1iuMmY&sns I volunteer for Make AWish and the Ronald McDonald Houses I am on the board for an org advocating for pediatric cancer and building my relations with amazing people who are in the front lines fighting childhood cancer. Kai’s story make me want to do what I can to honor him and his courageous fight as well as yours…this was your fight too…I really appreciate your strength and for being open about it on this blog…i think about Kai and your family…please know you have hundreds and hundreds of people walking with you through this…i know you will never be completely healed but we will support you as you live life with Kai right in your heart and soul.
There’s something about seeing your child’s name printed after their death. I’m sorry you’ve had to travel the darkest road but I’m thankful for your heartfelt posts about Kai. Eva died so suddenly that there was no preparing for her death but I don’t know if I could have gone to a meeting pre-emptively. I’m glad you have a place to go now and a place to belong even though no one ever wants to join that group.
Much love, Em
Kerri. I am still here. We all are. Our lives have been blessed because of you and Kai. I know your words are helping so many others struggling with the loss of their child. You are a blessing to so many. Thank you Kerri for sharing your gift. Hugs (strong ones)
Jen
I can’t tell you how much my thoughts and prayers as well as heart goes out to. You just amaze me on how well you can put your thoughts down, how wise you are for you age, how well you can think things out (even though you may not feel that way) and what a WONDERFUL mother you were. The courage you show is amazing. I’m so happy that we had the chance to meet Kai as well as you. Just remember, you will always be welcome in our group. You were a part of this group from the beginning and will always remain a part of the group.
You and Kai will always have a place in my heart. As I am so sure you have learned as you have walked this difficult path, there are people that are worth your time and there are those that are not. Anyone who does not want to hear about your precious little angel, Kai, has never loved as much as you and will not be worth spending much time with. Everyone may not always have the right words, but I so hope they will try. And I really believe you do not truly have to heal, Kai will always be with you, and it is more about accepting what is new and living with your beautiful angel watching over you instead of you watching over him. I am holding you and Kai close and hoping you can feel his love surrounding you. Praying for so much love and peace for both of you.
Kerri, your words give life to the truths that are presented to all the families who are struggling the same. You are an inspiration!!!! Your continued gifts of sharing Kais journey and now your journey as he follows you is a remarkable display of a mothers love!!!Kai, You, and Mark are in my thoughts daily!!!!
Continuing to think of you Kerri and grieving for your loss. My brother passed away at age 22, it was 13 years ago last Monday (not from cancer) and Christmas is still hard and always will be. He is still a part of my daily life and that won’t change. It doesn’t get “better”, it just gets “different” as time passes. I think it does help to find that you are not alone.
I want to say something meaningful but my words feel inadequate. Perhaps this is what most people face when they have not lost a child. I have had losses, but not this kind. I want to comfort you but not sure how to do that, especially since I’m outside any of your circles.
Kerri, anyone who meets you or reads this blog will openly accept you into their lives. We are all suffering from the human condition and the horribly unfair things about life that destroy us. It is only in reaching out that we pull each other back up. I’m so glad you are reaching out in all the ways that you are.
Right now my son’s very favorite book is “The Little Blue Truck”. If you’re not familiar with the book, there’s a friendly little blue farm truck that has lots of friends. A big yellow dump truck blasts by can’t be bothered to stop to be friendly. But then the yellow dump gets stuck and without even asking the little blue truck comes along and helps him. But then the little blue truck gets stuck! All of his friends come running to help push Blue, and Blue pushes the yellow dump. The dump truck says, “Now I see a lot depends on a helping hand from a few good friends.”
http://www.thebookchildren.com/2011/01/little-blue-truck.html
I was reading it (for the millionth time) last night and thought of all of the people surrounding you, helping you, loving you. Even if only one person is holding your hand at any given time, there is at least one person holding theirs…. and this is the way we help each other along. Through a network of love and support.
Please never lose love or hope. “I get by with a little help from my friends.”
Much love to you and your family.
Wow. You always share your soul and thus Kai’s spirit. His spirit came from both of you. Peace. Sr Peggy Nelson
My heart breaks for you. I am thinking of you and wishing you peace. I am so grateful for these groups that you have and that you’re surrounded by such support and love. This is what I am so thankful for. XOXO
Kerri- I too, bought a paper crane ornament- in honor of Kai. I wish I could have met him- and during these days of holiday lights and dark evenings, I hope you know there are people out there that care about you and are thinking of you and your family.
I AM GLAD THAT YOU ARE LETTING US STILL BE APART OF YOUR LIFE ,I ENJOY KEEPING UP WITH YOU AND KAI FOR SO LONG AND I MISS HIM DEARLY ! I PRAY THAT YOU WILL FINDOUT WHAT EXACTLY KAI WANTS YOU TO DO AND FIND PEACE .I LOST MY HUSBAND OF 17 YEARS TO CANCER AND I HAD NO IDEA HAD TO FUNCTION,I WAS LOST ,I HAD TO MADE MYSELF REALIZE THAT HE WAS NOT COMING BACK ,AND IT WAS SO HARD FOR ME .I HAD LOST MY BEST FRIEND .SO ALL YOU ARE FEELING IS NORMAL AND IT TAKES ALONG TIME FOR LIFE TO GET BACK .I WANTED TO CRAWL IN A HOLE BUT I KNEW I COULDN;T SO IT TOOK ME ABOUT 2 YEARS TO REALIZE I HAD TO GO ON I HAD A DAUGHTER AND A HOME AND A LIFE . SO YOU TAKE TIME TO GRIEVE AND FIND WHAT YOU NEED TO DO TO GET ALONG WITH YOUR LIFE AND WHAT KAI WANTED YOU TOO DO . ❤ MY HEART GOES OUT TO YOU .LOVE YOU PLEASE TAKE CARE REGINA BREWINGTON S.C.
It must be so hard, these first few weeks and months without him. Not that it will ever get easier, but there’s a lot of newness to loss in the beginning– lots of “first _____ without”s. I’m glad you have a solid support system. ❤
Your strength is amazing…..the legacy of KAI will live on in his beautiful, strong mother…..I think of you and Kai daily….and wish you peace at this most difficult time.