Losing Maddie – Five Years Later


March 13, 2016 — It’s hard to believe that five years have passed since Maddie’s “angelversary”. Maddie, the inspirational little girl that captivated a nation with her courage and kindness to others. Her mom, Kajsa, reflects on these last five years, and what the future holds. . .

From Kajsa:

I wrote this four years ago at the one year mark of losing my only child to terminal brain cancer and I just read it again for the first time in a very long while. Many things still strongly resonate with me, but many things have changed during these last four years.

Every year on this day, I try and reason with myself on why it utterly debilitates me. It’s not as if I miss her any less today than I do on the other 364 days of the year. 365 days of every year I wake up and the first thought I have is her not being here. But for some reason, as her angelversary approaches, the dark clouds inevitably gather and I am unable to keep it together. I think this year is extra rough because Maddie was 5 ½ years old when she passed away. I am approaching a milestone that signifies that she was here with me on Earth as long as she has been in Heaven. That realization is staggering. How could I have lived a glorious five years of being her mother and now have endured an equal amount of time grieving this immense loss?

But, I am here. I wake up every morning knowing she isn’t physically here, and I get out of bed. Every day, I get out of bed and I try and make the most of this precious gift called life. Trust me, that sounds a lot stronger than it really is. It’s not always pretty, but I don’t think I would be human if it were. I have found that a key to survival is purpose. For me it’s been a purpose of living in honor of her legacy and to lead by example on the simple notion that perspective is powerful. We are all in full control of how we deal with what life deals us. We can lie down and let it take us, or we can look it straight in the eye and say – you will not take me.

The word to best describe these last five years is resurrection: the concept of a living being coming back to life after death. Not in the biblical sense of course, but just the same this word strongly hits home to me. It’s been a long, arduous road that will continue for the rest of my time in this life, but I’m proud of the strides I’ve made.

I am fortunate to have an incredible general practitioner who is also a dear friend. Our daughters were friends. During the eight weeks of life left after Maddie’s diagnosis, there was a day when I thought I may have been having a heart attack. She dropped everything and brought me in for an emergency EKG, only to conclude that it was just a massive panic attack. In the last week of Maddie’s time here, I asked the good doc if I could borrow her stethoscope so that I could monitor my daughter’s fleeting heartbeat. Maddie was in a medically induced coma for the last 10 days and it was the only way I could tell if she was still with us, or if she had earned her wings.

After that, every time I would go in for a check-up I would see that stethoscope and be reminded of that tumultuous time, and I would completely lose it. For four years she strongly suggested that I try an anti-depressant. For four years I respectfully declined because I felt like if I succumbed to the help of a drug, I wasn’t in control of my own state of mind. I’m a Swedish Virgo – we don’t like to not be in control of anything.

About a year ago, I finally gave in to her plea and started taking a mild dose of Zoloft. It has been life changing to say to least. I am able to navigate through this new world of mine like I had never imagined possible. I still feel everything, but it is as if there are little cotton balls in my ears of emotion that muffle the pain to the perfect extent.

I can go to the grocery store and not fear the baby aisle or the holiday displays. I can listen to the radio with abandon and not feel anxious when a Taylor Swift song comes on. I am able to attend family events and have a loving relationship with my nephews. Just recently, I sat on a plane to Hawaii directly behind a family who were on their Make-A-Wish trip, all proudly sporting their logoed t-shirts. It’s the same flight I took with Maddie, wearing the same shirt, five years ago. I so wanted to talk to them and tell them our connection, but I refrained because I didn’t want to burden them with the sad end to our story. I hoped that theirs would have a happier ending.

I accepted an invitation to give the key note speech at the Protos Awards for the Public Relations Society of America and spoke in great detail about Maddie’s story to a room full of 150 strangers. I held it together and they gave me a standing ovation. It’s a moment I will treasure forever.


I was interviewed at length by Maddie’s hospice nurse who had been given the honor of writing a chapter on pediatric end of life care for the Oxford Textbook of Medicine. Out of the unfortunate hundreds of cases she has so gracefully handled, she chose our story as an example of “A Good Death” – someone who did things right in a horribly wrong situation. They even published one of my poems to my beloved daughter. I’m pretty damn proud of that.

I still haven’t celebrated a holiday, but I’m working on it.

I can’t begin to tell you how much it means to me when friends and strangers alike reach out and tell me that when they are going through a life-altering event that they think of me and it gives them strength. Knowing that I, in some small way, have helped them through a dark time warms my broken heart. Recently I had a good friend be told that her father was terminally diagnosed with pancreatic cancer and given weeks to live. I was there when she got the news and was able to hold her in my arms and comfort her as much as I could. She at one point said she didn’t feel comfortable placing her burden on me, because he had lived a long life and had children and grandchildren of his own – something I will never have. I told her that the fact that I was able to be there for her in her time of need made me feel human and alive. Being there for the ones you love when they need you the most is a sacred thing and something to be cherished.

It’s now tradition that I place two leis in the ocean on this day. One white, one purple – like the ones we wore kissing under a Princeville rainbow the summer before she was diagnosed.

princess in princeville

Her classmates also make a lei and write notes to her in Heaven. In past years her incredible teachers would take pictures of the children making the lei and send them to me. They would drop the finished product off at my home and we would share some wine and more than some tears. This year was different. I made the lei with her classmates on Friday morning. We did it at 8:00 a.m. – right when school begins. I parked my car, took a few deep breaths and started walking the path to campus. There was a little blonde school girl walking directly in front of me holding her mommy’s hand. I kept walking. I did not veer from the path I was on. I’m so thankful I went. Her classmates are in 5th grade now. They are so tall and so well spoken. They remember me and more importantly they remember Maddie. Their notes to her were beyond touching.

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I had the thought of creating the Maddie James Foundation literally hours after I was told she was going to die. I know it’s strange to say, but there are so many things that fell into place as if I knew they were going to happen even before they did – as if this was the plan and her destined path this time around. The Foundation raised $1Mill in less than three months. I began serving on the board of directors at the Ocean Institute soon thereafter. The Maddie James Seaside Learning Center celebrated its grand opening in May of 2013. A month prior to that I accepted the position of Vice President of Development for the Ocean Institute. For nearly the past three years I have dedicated my life to raising the funds needed to bring children from all walks of life to the Institute and Maddie’s Center to be educated, inspired and understand the importance of preserving our precious ocean.

I resigned from my position at the end of 2015. It’s been five years of nonstop focus and it’s time for a new chapter. A chapter that I have no control over and even as a Swedish Virgo – I am fully game. I’m going to travel. I’m going to wander but not be lost. I’m going to do whatever it is that makes me happy and brings me peace. I’ve dubbed it my “radical sabbatical”.

I’m serving on a Laguna Beach based foundation that gives major gifts to local charities that focus on educating children about environmental issues. I am thoroughly enjoying giving large donations to worthy causes rather than asking for them.

Above all, I am going to write. There is so, so much more to share about this compelling five year journey and I am finally in a state of mind to get it out of my little noggin and on to paper.

So as this day is again upon us – and I say “us” because I whole-heartedly feel that anyone taking the time to read this is as much a part of it as I am – it’s all good – as good as it can be, and that’s enough to be thankful for.

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  1. I still have the Maddie Foundation sticker on my car and think of your journey often. The new chapter of your journey sounds exciting and I wish you the best.

  2. Thank you Kajsa for the beautiful, touching post and how you have navigated these past 5 years. I was so touched by Maddie’s story, and attended her celebration of life service. My daughter was one year younger, even had the same birthday. My heart broke with yours. Mom to mom. It was wonderful to read your honest account of how you have carried on. I am so inspired by your strength and honesty.
    My mom was diagnosed with pancreatic cancer in August, a devastating diagnosis. I agree that even in the midst of the devastation, having people be there for me to hold me up during this time has been one of life’s biggest blessings. I believe that God sends people to you during times of grief and despair to help carry you through, and that the opportunity to help lift others up and love them in times of need is, like you said, sacred. You will be in my prayers and I wish you a life-altering, awe-inspired radical sabbatical. Sending you love + light.

  3. Alisa Detwiler says

    I clicked on the photo of your beautiful daughter without reading the caption. Her sweet face reminded me of my Maddi when she was much younger. My heart sank as I began to read… tears began to fill my eyes and I immediately felt a connection. I lost my son, Jakob when he was 7-months old. April 25th will be his 18-year angelversary (or heaven anniversary as I call it).

    Thank you for your beautiful tribute to your daughter and for sharing how you’re keeping her memory alive. You are strong, passionate, and many people will gain strength through your experience. This journey is never one we want to share, as it’s so painful, but I am encouraged by your words. Thank you so much for sharing.

    God bless you!

  4. You are such an inspiration. I read and cried my way through your loving story. I am in awe of your courage and strength, and amazed by your resilience. I love that you have given so much of yourself to educate other children, but am happy that you are going to take some time for you. I hope to read more of your wonderful writing in the future.

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