Next year will be different…too

Next Year will be Different – 2012

This time last year my family gathered at Children’s Hospital for Kai’s last Thanksgiving.    He was so near the end that day I could not help but think how different thanksgiving would be from then on.  I could not help but think of all of the families who had already lost their children and were trying to celebrate despite their loss.  I could not help but think how I didn’t want to ever spend another thanksgiving out of that hospital, without Kai.

It has been a year and this is year is different.  The anxiety of the one year mark, Kai’s angleversary, started months ago and at some point early on I realized that although Kai was with us last Thanksgiving, this year his anniversary date  was going to come the day before Thanksgiving.

Next year it will be on Thanksgiving….

It took me a while to process and accept these dates and times. Trying to figure out a way to honor his death while also trying to celebrate Thanksgiving with my family seemed entirely impossible.

In the weeks leading up to Kai’s anniversary, one year since his death, I just did not know what to do with myself.  I wanted to run away, hide under a rock, scream and cry.  I wanted the world to stop with me because I could no long keep up.  Every morning lately has struggle to get out of bed, to get to school or work.  Every night has been a struggle to stop my mind from racing long enough to fall asleep.

This year is different and although I have many things to be thankful for, celebrating the one year anniversary of my sons death the day before thanksgiving is not one of them.  Having one year pass is scary.  It doesn’t seem possible to have lived an entire year without him.  I hate that I am so far from the last time I held him.  I hate that my firsts with and without Kai are over…

Thinking of how to honor Kai this year was very difficult.  I don’t have the thoughts and memories of siblings to influence our day.  I don’t even have the input of a spouse to lean on or bounce ideas off of.  The weeks leading up to this anniversary, despite being surrounded by so many amazing family and friends, felt very empty and alone.  I lost MY entire family this year and things will never be the same.

November 27, 2013 I packed up my car with some pumpkin whoopee pies, and a special glitter stick and drove into Boston in the torrential rain the day before Thanksgiving.  I had planned to spend this day quietly and alone, somewhere by the ocean but at the last minute I knew I would much rather visit my friend, Kai’s friends, who has been in the hospital for the last few weeks.

Getting into Boston was a breeze.  I drove through Allston to get to the hospital just as I had every week with Kai.  I’m sure its not the fastest way to the hospital but it’s through my old neighborhood and that’s the way we always went.  Driving down those lively, dirty, collage kid filled streets each week made me feel connected.  It was familiar and made me feel at home.  It represented a part of my identity that I clung to during those months of treatment, the part of me that lived before brain tumors and hospitals.  Driving those streets made me feel like I belonged.

Today it still felt like home but that drive is now forever embedded in my brain in the part of my life that includes brain tumor world and hospitals and Kai.   We drove that path so many weeks on our way to the hospital.  We took walks and ate at restaurants there, Kai and I and Ashley and Joe and Molly and Chelsea and Pat and Lisa and Bill.  I have years of memories in that neighborhood from my life before Kai and now I drive through there remembering the time I had with Kai.

It has been a while since I visited the hospital and a lot has changed.  There are new doors and new halls and new employees working at the desk.  What was once so familiar and comfortable is different now.  It is not the same place Kai and I lived last year.  Time is moving forward and things look different, people move on and next year will be different too.  Kai being gone one year is not the same as him being gone one month and next year will be even different still and I’m just not ready.   The more things change the more the memories start to fade and I’m not ready for that.  I don’t want to be that far away.  One year and one day, today.

I walked quickly through the lobby back to the old elevators that have not been repainted or moved since the last time I was there.  They look exactly the same as when I left them and that felt comforting to me.   My heart raced a little as I pressed the 9th floor button.  We stopped at 1 and 7 and then 9.  I step out,

“Thank god it all looks the same.”

I made a pit stop at the bathroom at the end of the hall.  The same bathroom I visited one year before on the night Kai died.  It felt ok.  I could do this.  I could go in and see our friends and be ok.

I had a great visit with our friends Hailey and Lisa.  We were in clinic each week together all through Kai’s treatment.  When Kai landed in the ICU last year and then transferred over to the comfort room Lisa came to visit every week while Hailey was waiting for chemo to start.  It was nice to go visit them and see Hailey so strong and know they would be going home soon.

To my surprise many of the nurses and staff still remembered me all this time later and Lisa told me they will still remember us next year too.  It felt good to be there, like Kai was close by.  Maybe this is the feeling most people get when they visit the cemetery.  Kai’s ashes rest in a little urn in my room that I see everyday, but taking time to go someplace outside of my everyday life to honor him felt good.  I’m glad I can do that I can do that in the hustle and bustle of the hospital instead of the quiet cold rolling hills of a cemetery.   This feel right to me.

After a few hours I took the long walk back down the hall and into the elevators to go home.  I paused a moment in the lobby to consider all the families who would be spending thanksgiving there tomorrow, all the families who were near death, and all of the families who would be spending thanksgiving this year without their children like me.  I paused a minute to remember walking out that door into the night a year before, the last time I saw Kai.

I agonized over what to do on this day.  I knew nothing would feel right and nothing would feel wrong but I still had to come up with something.  In the end Kai put me in the right places at the right time and I am thankful to have spent the day with some special friends and lots of memories.

On my way out the women in front of me paying her parking ticket was getting flustered.  I looked up to see what was going on and I watched as three different cards got declined as she tried to pay the $10 parking fee.  I told her I would like to pay her ticket in honor of my son’s anniversary.  I brushed over it quickly as her young daughter was standing right there,  telling her I was there to visit a friend and I asked if they were there visiting or for an appointment.  She told me they came in every 3 months because her daughter has diabetes.  She told me she just deposited money at the bank and she didn’t know why it wasn’t go through.  I asked her to please allow me to pay so they could get on the road and beat the holiday traffic.

The women behind the counter smiled as I signed the receipt paying for both of our tickets.  I had done so well keeping it together in the hospital all day but the minute that mom and daughter got on the elevator I sobbed.

I still don’t know what to believe about the after life or angles or spirit but in that moment I knew Kai was all around me.  He continues to change the way I live my life everyday.  His strength lives on in those of our friends who are still fighting.  Our memories remind me that now matter how much things change or far away we are my life will always be a part of his and his of mine.

This year as I try to drag myself out of bed, take a shower and put some makeup on to meet our entourage for Thanksgiving dinner,  I am thankful for the memories because sometimes that’s all we have left.

“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.”

Lois Lowry, The Giver

Thanksgiving 2010

9 thoughts on “Next year will be different…too

  1. Bless you Kerri. Yours is an incredible journey of strength, struggle and inspiration. You are an amazing mother and woman — a tremendous example for so many. My thoughts and prayers are with you always, particularly during this holiday season. Much love, “Uncle Ling Lang”

  2. Thank you for sharing your beautiful thoughts. Everything you did, with going in to Boston, seeing friends, and spending the time there, were perfect to do in memory of Kai, for the people you saw, and hopefully for your own going forth journey. To finish your visit in the “pay it forward” pay/parking gesture for the mother you wrote about was a fitting ending to a specially spent day. I will keep you in my prayers, that future days will bring a new kind of happiness and peace.

  3. Love you. Thank you for visiting on such a hard day. Know that you and Kai will forever be part of our lives. Just thinking about him and talking to him like I frequently do brings me a sense of calm and peace. And no matter what changes may come I know that he will always be with you. Sending you so much love not just on this day but every day.
    Love, Lisa (and Hailey too)

  4. Kerri,

    We have never met, but I have been following your blog for over a year now.

    I have a son, too. He is 19 months old. I see Kai when I look at him, and I see my son when I look at your photos of Kai.

    Your story has touched my heart so deeply. Though I’ll never know how you feel or be able to understand what you’ve been through, I know about a mother’s love. It’s an amazing force.

    Your last couple of posts were especially touching, and I found myself going back and re-reading your whole blog again, retracing your journey with Kai.

    I just want to thank you for sharing your son with people like me. It’s a strange phenomenon – to love a little boy I never met – but I do.

    And I am so impressed by you. Motherhood is challenging under the best of circumstances, and you have certainly faced more struggles than any mother ever should. Yet you gave everything to Kai, even when you were emotionally bereft. You did everything you possibly could to make his life happy and rich and meaningful. You fought when you had to fight, you were his voice time and time again (as you so eloquently said), and you let him go when you knew that was what was best for him.

    I am not certain about very many things, but I believe your son lives on. I don’t think Kai will ever be gone from you completely. I think you and he will always be connected. I think he is with you now. When I think of you, I pray that you feel his presence and that it brings you some comfort.

    You and Kai will be in my thoughts, and I will always be grateful for the privilege of getting to know you both through your blog.

    Please take good care of yourself.

    Kerry Killgoar

  5. I remember your son very well. I have been reading your blog for a long time, and I will never forget him. I cried very hard when he died. Your memories will not fade. My son died three and a half years ago, and he will always be with me. Don’t be afraid.

  6. Thank you so much for sharing. Our 10-month-old daughter was recently diagnosed with an optic pathway glioma, and the future is very uncertain. I’ve been working my way through your whole blog. I find reading about your lovely Kai therapeutic, even though he sadly didn’t make it. It’s an awful thing for a parent to go through, but you’re doing it with incredible grace and compassion.

    1. I am sorry to hear about your daughter but am glad you find our story helpful. I am happy to talk with you anytime. You can find me at Kai’s village on FB xoxo

  7. What a hard Thanksgiving you have had, Kerri. If only there were some useful words. There are people still listening, though. People who never met Kai, yet whose lives have been enriched and changed by reading your blog; we won’t forget him next year, either, or the year after that. I hope you find some moments of hard-won peace during the holiday season.

  8. Hi Kerri, we definitely feel your pain now as we are in the grieving time ourselves after Gage’s passing on Aug. 17, 2013. It’s all so unbelievable. I have searched my boxes for your email which I know we had, but it won’t show up. Could you please email me so that we can all stay in touch. Gage’s mom is single, with no other children either, and is very hard to relate to anyone else. Would like to correspond more if you don’t mind. I read over your posts because could not get to them since about May when all our trauma was taking place. When I caught up on Thxg afternoon, tears flowed and is all so similar. My email is terri.buri@gmail.com. Love & prayers, Terri (Gage’s mimi)

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