Away for the holidays

This week has been full of ups and downs.
There are so many wonderful positive things happening with Kai’s Village keeping me busy. It’s amazing to see Kai’s spirit living on in the work we are doing to help others. It has also been overwhelming at times. So much is happening so fast that it can be hard to keep up. It’s hard to feel like this is my life. Nothing of my life is the same anymore. My past feels so irrelevant after Kai and any thoughts I had of my future died with him. Everything I was is slowly turning into something else. Try to keep moving forward but it just feels like I am somehow living someone else’s life.

I thought I was doing pretty well, until last weekend. Something seemed to change in me Friday around the time I first heard about the school shooting. I assumed it was just time. i mean i cant expect to be able to hold myself together forever right…
I didn’t make the connection right away. I assumed it was just my time, I mean I can’t expect to be able to hold myself together forever right?? But after a few days -as my anxiety escalated to full blown panic attacks and then night terrors, finally I realized that it was partly timing and partly circumstance. People everywhere talked of the shooting, of the dead children, of the town in mourning. Over and over and over, there was no escaping it.
A friend of mine who also lost her son told me things like this will always be different for me now. There is the sadness of our own loss and the emended pain and empathy for all of those families who are feeling it for the first time. But things with Kai are so new. To have such an epic tragedy as this, feeling the pain of 27 families while mine is also still so fresh…it was more than I could process.
I did my best to ignore it.
As tragic and awful as the shooting was, I did not watch it. I still can’t watch much TV in general which made avoiding a little easier.
We lost our power for a few hours on monday from a little ice storm we had so I decided to get out for a bit and get a pedicure. Of course the nail salon did have power and a few large televisions hanging on the walls. It was late afternoon, talk show circuit time and sure enough The Katie Couric show was interviewing a family from CT who lost their little boy in the shooting. The TV was on the wall right behind where I was sitting drying my nails. I did my best to ignore it but as I starred across the salon and out the window, everyone else was starring in my direction at the TV. Katie talked softly and gently to the parents about their loss, and then I heard the voice of a little boy. The sibling of the child who was killed. She ask the boy what his brother meant to him, what he loved about his little brother. I turned my head to see the boy. He was young no more than 7. He told a story of what a good boy his little brother was. How his brother always turned off the lights when he was supposed to. How his little brother was such a happy boy.
Seeing this little kid on TV talk about his brother this way – innocently, nievly with no true understanding of the gravity of the situation. To hear his little voice try to tell stories of his little brother, who was senselessly murdered less than three days before, it seemed cruel to me. It felt like torture for the child, for the parents and for myself.
Panic came over my body. I tried to stay quiet but couldn’t help the rage filling me inside. I felt so angry that these parents and adults would put this kid through this interview. It bothered me that all of these people in the salon were glued to the TV and no one else seemed to have a problem with it the way I did. It made me insane that, as I sat there all eyes pointed in my directions, my heart and eyes welling with pain for this boy, these families, no one knew that my own baby had just lost his life too!
I tried to take a breather and go to the bathroom but when I came back it was only worse. I was shaking by this point and I had to let it out. The woman across from me could tell I was upset and another women behind her was now in tears from watching the show. I started saying how upsetting it was to see this 7 year old being questioned about a situation he has had no time or ability to process. I started ranting about how these adults are not looking out for this child’s best interest. I can understand the parents need to tell the story of their child, believed me I can empathize with that, but this kid on TV right now…it just seemed wrong. I had this whole crazy conversation with the woman sitting across from me, all the while she did her best to avoid eye contact and stay glue to the TV like everyone else. Of course she did, I was acting like a crazy person. This was a tragic news story, a great loss to our society, but sitting here Monday morning it was just another topic on a talk show.
TV makes these events seem less real in a way, but once you have lost a child or been through a trauma, there is no amount of time or makeup or lighting that can dim the sharp reality of those feeling of loss. After a minute or two of working myself up, I started to apologize…and then there it was…’Im sorry, this is all just a lot for me to watch right now, my baby just died of a brain tumor two weeks ago.’
I did it again. I said it again, to a perfect stranger.
I apologized again, I wasn’t trying to upset her. I wasn’t trying to make this about me, but there was no way I could walk out of that place without them knowing. As soon as I said it I started packing up and left. I walked out into the cold icy day and could finally breath again. The world covered in a thin, shiny, sparkly, frozen water was just what I needed. It felt so right to walk into the cold dead winter world, alone. It felt perfectly quiet for just a moment.

When we were still in the hospital I had decided to take a trip for Christmas. I figured it would be good to have something to look forward to and that being around everyone for the holidays would probably be to much for me to handle.
Most people in New England would head south for the winter. Some where warm and tropical and sunny. I will be leaving for Canada.
Every time I tell this to someone they look at me like I’m crazy. ‘Are you sure you really want to go to Canada in December?!?’ I have had offers for Jamaica, Florida, Arizona and Hawaii, all of which seem like a more likely and appealing winter getaway -but I couldn’t stand the thought of siting on the beach somewhere. The thought of soaking in the warm sun makes me want to shrivel up and die. The cold arctic air of Canada, wrapped in layers of sweaters and scarves in a place where they speak mostly French, somehow that seems okay right now.
It felt more manageable to shop for boots and gloves rather than bathing suite and sunscreen. We originally were thinking of going to London, but even the thought of getting on an airplane was to much for me right now. Making plans of any kind have been very difficult. I can hardly commit to a lunch date these days, never mind international air travel. So Canada it is. My passport will still go to good use, but there will be no lines or crowds of people. We will pack up Kai’s car and, when we are ready, drive away. I can bring as many of Kai’s things as I like. I can stop when I want to, or just keep driving. I always lobe a road trip so this just seemed right.
All week I have been trying to pack. As much as I know I need to take this trip packing has been difficult. I am used to rushing out of the house with a bag of sweats and a tooth brush and spending days, weeks, at the hospital with Kai. Even when I have gone overnight somewhere in the past few years, I spent most of my time packing up Kai’s thing and then just thrown my stuff together last minute. Taking time to pack for just me is hard. It’s foreign. It turned into one of those real life necessity things that just seems so pointless and overwhelming to me right now.
I think it took me four days to get out of the house, literally. The first two I focused on laundry. It had been a while so this was a big undertaking, and focusing is more of a problem than ever (and its always been a problem!) once I saw what I had I began putting things in piles, trying to plan out what I would really need. This day was difficult. I started feeling like maybe I wasn’t ready to leave for so many days. I started feeling bad that I was abandoning my family for the holidays when I know they are all hurting too.
In the end I took every piece of clothing that currently fits me. I took 4 pairs of boots, workout shoes and clothes (even though I have not worked out in many, many months) 3 books, 2 cameras and a few of Kai’s things. I left the house at least 8 hours later than I was planning and almost left without my jacket ( thanks mom)! But I am now on my way.
Tonight I am spending the night in Boston with Ashley and Joe. In the morning the three of us will get in Kai’s car and drive. We have no hotel reservation for tomorrow because I could not commit to how long I want to drive or where I want to end up or if i really was even going to be able to go! I have to say, it takes some very special friends to use their vacation time, pack up, get in the car and spend their Christmas with a person who can not even commit to a hotel reservation!
Wish us luck!



26 thoughts on “Away for the holidays

  1. Travel safe, my friend. I think your travel plans sound beautiful. Thank you so much for sharing every detail. I truly appreciate how you include all of us. I’m sending all my love. Just want you to know you have endless hugs out here in California and, anytime you need to get away, you have a home here. You were so amazing to share Kai with all of us, we will always carry some of him, and that’s a blessing.

  2. I know your Odin. We list our McKenna to DIPG in July 2011, just 6 months after diagnosis. I am friends with Audra , Super Max’s mom. This need to escape is Ok, it is part of the process. I stayed on my own for two days shortly after we lost McKenna. My daughter was On a trip with Jr. Guards snd I needed to be away from everyone to process my grief. I left my husband , my parents, my friends without telling them where I was going. I felt guilty, but knew I needed this time to apologize to my daughter, to decide if I could continue to function for others in my life, to grieve in my own way without the expectations of others. Unfortunately, I cannot say the pain is less almost 1 1/2 years later, but I have learned I need to honor what I sm feeling without the guilt if worrying about what others think. If you ever need to vent, please feel free to contact me. Message through our Facebook at McKennaClaireFoundation

  3. First and foremost, love you and I’m sending you hugs. I love that you are able to get into Kai’s car with a couple friends and go. You need to get away for a bit and start to process things. And stop apologizing for how you feel or what you say even to strangers. You have every right to feel the way you do. Sending you so much love and hugs. Stay warm.

  4. I just want to put my arms around you and hug you, Kerri. Do and say whatever you need to and go wherever you want. Be with who you need to be with. I wish I had the words but I don’t, just know that I am here for you, like so many others.

  5. Wishing you peace and quiet for your holidays, let the love of Kai wash over you keeping you warm in Canada. Thinking of you, Mark, and Kai daily!!!! You guys have changed me forever!!!! Thank You!!

  6. May you feel Kai’s love constantly. He is with you but may be hard to feel sometimes. You love him so deeply and he loves you right back. Wishing you a peaceful time away. And sending many hugs.

  7. Safe journey, love. My most sincere wish this holiday season is that you continue to trust yourself in this process, and that you find even some small moments of peace. Thinking of you daily. Much love…

  8. You sound very special so I can see why your friends want to spend the Holiday with you. And I Love that you call your car Kai’s car:) you really put life into perspective for all. I cannot say it enough that Kai is a lucky boy to have you for his Mommy:)
    I was thinking of you when I heard of the shootings:( I like to think Kai has 20 more little friends in Heaven:) He is healthy and playing with them. It hurts for you left behind missing and wanting your baby. You need to write a book. You’re very intelligent. I have read every story about Kai & he is thought of in my house a lot. I wish there was something I could do to help you. I know I can’t. But Kai will never be forgotten. Thru your words & stories & his beautiful pictures:) Christmas ugh…it will be hard. But I do believe Kai has a Christmas tree & he’s happy..he’s looking down on you missing you too. Have a nice time with your friends. Middleton, Ma.

  9. Dear Kerri, Your writing is so beautiful and and all your memories of Kai are so precious! May you travel safe and have a peaceful Christmas..Kai will be with you all the way…..your little Angel! Love, Robin and Bella

  10. sometimes the best therapy for the heart is to just follow your nose and do what you “fee” you need to. Life is not written in stone. Let your heart guide you to where you need to be in this exact second. Never feel you need to apologize for how you are feeling and for how things affect you. Those feelings are your God given right. And those that matter in your life…will love you no matter what every step of the way and accept you exactly for who and what you are in each and every moment….

    Blessings to you on your journey…and remember Kai is right there with you every single step…feel his kisses when the wind blows….Loads of Love…from Canada

  11. Wrap yourself in the warmth of Kai’s love. I am so glad that you have Ashley and Joe to go with you. Real friends will understand whatever you say or do. There is no need to apologize to those who do not understand what you do or say. Try to think of yourself and stay warm. Sending you hugs and love.
    Mary Pat

  12. Have a safe trip Kerri, Ashley and Joe. We’ll miss you Christmas day, but whatever is right for you is right for us too! I hope this journey is the first step toward healing your broken heart. Love and prayers,

  13. I am sending you love and hugs for your trip. When you get back and when you are ready, you will have lunch with Megan and she will help you get to the next day, and the day after..love, alice

  14. Everything you are feeling and doing is all ok. You have to work through it in your own way. You and Kai and your family are thought of every day.

  15. I wish you a holiday of peace and beauty. And thank you for your continued honesty and courage in facing your loss. Love love love.

  16. Wishing you peace and comfort this Christmas. Your precious gift of Kai was taken from you too soon but may you always feel him with you. He will forever be in your heart and watching over you and will share your journey. I pray daily for you and your sweet angel.

  17. I worry so much about you and your feelings, Kai was such a special little baby boy and so strong. Kai fought so long and hard, but please know that his spirit is around you. Im glad that you have friends that are willing to go with you to canada. God alway be with you.

  18. This aftermath part is hard. Living in your specialized medical world is at least familiar– going back to “regular life”– which is basically just the rest of your life in one long endless line stretching ahead of you forever– is hard because you carry around the knowledge that the world will never be the same and something huge is missing, and no one has any idea, they just mill around going about their business like everything is fine. It makes you want to scream at them– don’t they know what’s happened?!

    I hope your road trip brings you some peace and clarity. ❤

  19. You are truly an inspiration and have the soul of a saint to have gone through all that you did and support your son through everything he went through. I have read through all of your blog and am just astonished by how strong and amazing of a mother you are to Kai. I pray for him, you, and your family that you can find peace knowing your baby is in God’s hands. The pictures and stories you so eloquently wrote about are an inspiration to anyone going through any difficulty in their life. He was a beautiful boy and he lives through you now. Kai was so fortunate to have you as a mommy and I know you feel the same to be his mommy. Know that you have the strength of this amazing community behind you and families that think and pray for you daily 🙂

  20. Just wanted you to know that I think of you and sweet Kai every day. I hope you were able to feel a little peace while away. My wish for you this new year is to find something each day (or often) to laugh out loud about. May it be a friend who makes you laugh with a story, a list of hilarious autocorrects, or simply laughing about something you did. This won’t change the grief you feel, but it will make you laugh. simple. Cathartic.

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