I am a visitor here

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.


21 thoughts on “I am a visitor here

  1. Such a beautiful story! You were blessed to meet each other at that very moment for that very reason. What a gift you gave to each other. That Kai gave to both of you in that moment. Kai’s Village is such an amazing thing and you are an amazing mama!

  2. Let me start by saying I am so sorry for your loss – thinking of your precious Kai and hoping he is at peace. I admire all that you are now doing in his honor – I am volunteering my time to work with Cindy Campbell on the Ty Louis Campbell Foundation. That you moms can turn your grief in to ways to help other families face what you have – your strength and courage is an inspiration. I grieve for your children but stand beside you to help as you move forward to build your foundations and keep their memories alive. Thank you for sharing your precious baby with all of us, thank you for all you are doing. I send you love and support from across the miles – and pray for a day when there will be a better future for kids diagnosed with cancer, or even better we’ll figure out how to keep kids from getting it. No child should have to face this disease.

  3. That’s wonderful…I haven’t known how to respond to your “vacation” post, because it seemed like you were determinedly doing something that was supposed to be good for you, but that on some level it didn’t fill the need you really needed filled. But the Kai’s Village work seems like it’s the key. I’m so glad. –sending support, as a stranger who, like many others, continues to follow your journey.

  4. Kai must be so proud of you! Your courage, caring, and ability to give are truly inspirational. Sending you a million hugs as you continue to make Kai’s mark on this world.

  5. This is a beautiful experience. Thank you for sharing it.
    We live down the street from UMass Medical. The facility is amazing, and I’m so glad to have it close. We drive by all the time and until I knew who you were and learned of all the kids fighting cancer in this one place, well, it was a hospital like any other. Now, every time I pass it, I say a little prayer for Kai and for all of those children. It has a sort of reverence about it now. Again, you are sharing more than just stories here. You are sharing life and change and love. Sending you love in return……

  6. Oh, I’m so happy you got to go visit the hospital and speak with that little boy’s mom, since it was so therapeutic for you! I love that you met with the child life director, too. 🙂 The work you’re doing now is so important, and will benefit so many. So, for all of those people it will benefit in the future, thank you.

    I think of Kai all the time. Such a special little boy!

  7. Kerri, I truly believe God has chosen you to be this advocate for so many children and their families. I feel sad that you have suffered but through that darkness God gave you light. You were meant for this! God Bless!!


  8. What a beautiful post! I truly, from the bottom of my heart, hope you can continue to find healing through helping others. Kai is with you, and will be with you, all the way. You can make such a difference in the lives of other families going through similar trials…hugs to you!

  9. A very Beautiful post ! I am so glad U got to spend the day helping the Mom ! I pray U can continue to find peace and healing while helping others deal with the same kind of pains ! Kai is in Heaven looking down and cheering U on ! We love U and sending U Big Hugs …

  10. Kerri, you need to know that you are not anybody’s “worse nightmare” – the cancer is. If anything you are a sign of hope because we see that if our child’s death is something we must go through then maybe we could make it through too. You and Kai are such beacons of love and hope. Your love and kindness is so evident to anyone who meets you and you have a calmness about you that you share with others. You could never be anyone’s nightmare. We love and miss you. Sending hugs.

  11. Kerri, it is very clear to me you were put on this Earth to have Kai. You are not only helping these families through such an unthinkable journey, you are also inspirng so many regular moms and families… and people. You are a remarkable example of how to live life – how to handle such an unfathomable situation with grace, courage and hope; how to be an advocate for your child no matter the cause; how to love a child with every fiber of your being; and how to never give up. I think of you and Kai everyday and check often for your updates, as they always have a way of putting everything into perspective for me. Thank you for always reminding me how important it is to live everyday to the fullest and to never take any moments with my children for granted… especially the most trying ones. You really are an amazing woman. Sending many hugs and much love. xo

  12. Amazing story! Kai is still doing amazing things and you his amazing momma are pushing forward, his life is still making an impact. Much love to you and your family.

  13. Thank you for continuing to share Kai with us. He was such a special boy and continues to be help others with his spirit.

  14. You’re an inspiration, Kerri. Truly. Thank you for all you do to remind us, everyday, to live our purpose by being our best selves in this life. Kai did. You are. Thank you.

  15. Sending you prayers of love, strength and comfort. You are an amazing person who has so much to share with the world. Thank you for sharing your beautiful Kai.

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