Last week Kai’s Village, Andrea and I, went to Umass to talk with the child life specialists about how we can get connected and help the families there. The Child Life director was very happy to meet with us and was even more excited when I told him how important it is to me to not just serve cancer kids. I explained to him that Kai had many disabilities and I know first hand how difficult any one of these challenges can be on a family. He seemed so genuinely happy to hear our story. He listened to our story and agreed that many families of kids fighting chronic or life threatening illness do not always get the support from their communities that they need. I know we can not do it all, but we can do something and talking with him really reassured me that we are on the right path.
After our meeting we were given permission to join Mr. Kim (the music therapist) and visit some kids on the floor. Mr. Kim volunteers his time every week to entertain the kids with his music, magic tricks and stories. He does such an amazing job and the kids just LOVE him!
I didn’t put much thought into this visit to the hospital. I have been trying to prepare myself for visiting the Jimmy Fund/children, I know that will be hard, but umass wasn’t our hospital. Kai didn’t die here. We hadn’t even been on the floor here in well over a year. This one will be easy, I thought….but there I was walking off that elevator on the fifth floor and a sudden rush of butterflies flew into my stomach. I could feel a slight flush come over my face as we walked past the waiting room where I so vividly remember calling my family and friends, all those months ago – calling to tell them my baby had a brain tumor. As we walked down the hall, out of the corner of my eye I saw one of Kai’s doctors. He did not see me and probably would not have recognized me even if he had, but I recognized him. I remembered how everyone always questioned him, because he looked so young. I remembered how much time and care he took with Kai. I remembered watching the young female interns vying for his attention as if he were a real life McSteamy. I remember seeing them walking outside, joking laughing in the crisp spring air.
It all came flooding back to me in an instant. This is where Kai was diagnosed. This is where I first watched my baby be put to sleep. This is where I became the mother of a child with a brain tumor.
When Kai was alive I felt a sense of calm in the hall of a hospital. We were safe there. Someone else was in charge. I could breath. But now that he’s gone its different. No one can save him now. I no longer have that parent badge that tells people I belong. I am just a visitor now and it felt weird.
As we walked down the hall with Mr. Kim he told us one of our Village families was inpatient. I learned of this family through a friend and the mom and I had talked a bit on Facebook. Her son is being treated for leukemia. She did not know we were coming and I was not expecting to see her, but after meeting I know Kai brought us together that day.
Things with Kais Village have been hectic and it is sometimes hard for me to keep up. I spend most days in meetings talking about everything from logo design, to 5k fundraisers to office space. It has been great to keep busy but sometimes, in n this midst of trying to help everyone else I forget to take time to heal myself.
Spending time with this family, facing the hospital, I was able to do both.
It was amazing to watch her boy run around his little hospital room, tethered to a poll filled with bags of fluorescent chemotherapy drugs. He danced around, running from one side of the room to the other, while carefully (well as carefully as any 5 year old can be) pulling that poll behind him like it was instinct. He played games and told stories and sang songs, without a care in the world. It takes so little to lift a child’s spirit, they are so open most of the time.
As the boy played with Mr. Kim, I talked to mom about their journey. We did the typical cancer small talk. We went over diagnosis and treatment, and how much time they’v got left -the questions anyone would ask. I listened for the obligatory stock responses of a chemo mom at this point in the journey. She told me how well he is tolerating the treatment and how they only have four more days inpatient and then they go home to normal life for a few weeks. She tried to put her best foot forward and speak with confidence and determination, as we all do when playing this game. It is all we can do. To convince others is to convince ourselves, this will all be over soon, and everything will be fine.
But then I started in on the I’m a chemo mom too kinds of questions. I asked about the rest of her family, and what kind of support they are getting. I asked how her other child is doing and how her extended family and friends are reacting to it all. I asked how she is holding up with the long hospital stays, if she is getting any sleep or real food. I asked her when’s the last time she took a breath of fresh outside air or slept in a real bed. I asked her the questions only another chemo mom would know to ask, and somewhere along the way she realized I wasn’t just some stopper by. She realized I was Kai’s mom.
Her eyes began to well and in an instant I realized that in this world, I am her worst nightmare. The side of this we all silently fear, the potential death we ignore as we go to the ends of the earth holding onto hope that ours will be the one who makes it out ok. There I was standing in front of her forcing her to face this possibility. Forcing me to face my own new reality.
For a second I felt guilty for pushing Kai’s death on her, I know what a struggle it can be to hold onto hope. I know there are those who don’t ever want to face the other side, not even for a second. I did my best to show her that Kai is not her boy. That Kai’s life was different and that her son was running and singing and playing, and was going to be fine.
The second she realized I was Kai’s mom, she looked into my eyes, grabbed my hand, and from one chemo mom to another and without saying a word, we felt each others pain. She saw in my eyes that even though Kai has lost his battle, this fight is not over for me. We all fight for all of our kids. When one is doing well we all celebrate and when one does not make it we all mourn. Without saying a word we said it all. And then we laughed and cried and held onto each other in the cold fluorescent light of a hospital bathroom, careful to hide our tears and fears from her little boy happily playing on the other side of the cinderblock wall.
This is what’s its all about. It felt so good to listen and support her. It felt good to talk of Kai and our journey. That our tragic loss can still be connected to hope, by just being there. I felt privileged that this is how I get to spend my days right now. All of a sudden all of the work we are doing, the late nights and long meetings, the fundraising and networking, it all came together in this one moment. I needed this mom at this moment. I needed this visit. I needed to go into that hospital and talk about Kai and watch this beautiful boy laughing and playing. It is days like this I feel Kai working right beside me, bringing me to the right place at the right time to help me help others, and to help me heal myself.