Today marks the one year “Angelversary” of Maddie’s passing. Kajsa reflects on the last year–from how she’s coping with the loss of a child to how she’s continually feeling Maddie’s presence . . .
People ask me all the time how I am doing. My response is usually, “I’m OK.” I say this because I don’t think most who ask really want to know the truth: I am not OK. A year ago today I watched my only child die in my arms. I think I’d be pretty messed up if I were OK.
I hear the term “grieving process” too frequently. “Process” being defined as “a systematic series of actions directed to some end.” Those who have lost a child know this term doesn’t exist. There is no end to this grieving. We will never heal. There is no getting over this. I have come to accept that sorrow will be a companion of mine for the rest of my life. I have learned to embrace it and not feel wrong about having it as a friend. This does not mean that there haven’t been moments of happiness this past year; it just means that it’s a different sort of emotion. Happiness is always laced with a little bit of sorrow, and that’s OK.
It’s “anguish” that is no friend of mine. “Severe mental or physical pain or suffering,” is a term that’s definitely in my vocabulary. I have a broken blood vessel under my eye from wiping away one too many tears, I’ve lost a bunch of hair that is finally starting to grow back, and I get frequent migraines. I feel extreme anxiety when meeting new people because I fear the question “Do you have any kids?” is moments away. All in all, if my biggest obstacles are a little extra concealer, a new hairstyle, and a few headaches . . . I think I’m coping pretty well.
Twelve months in, the anguish has started to slightly subside. I believe this is a result of me being honest with myself about what I am and what I am not capable of. I’ve tried to make this new world of mine as protective and secure as possible. My friends and family have been amazingly patient and supportive in this process. I’ve only seen my four sweet nephews a few times since losing Maddie. There have been family dinners that I’ve had to run out of because all they did was remind me of her not being there. My mommy friends know the things to invite me to and the things to shelter me from. It’s painful to see Maddie’s friends getting older and growing taller. There were no birthday parties, no play dates, and no holidays this past year. I spent Mother’s Day, Halloween, Thanksgiving, and Christmas very far from home, in new places where the beautiful memories I have with my beloved daughter were not around every corner to emotionally punch me in the stomach. I hope that one day I’ll be able to celebrate on some level, but this was not the year for that.
As much as I have tried to create an emotionally war-free zone to live in, it’s inevitable that I encounter some land minds along the way. Going to the grocery store is tough, and there are certain aisles that I always steer clear of. I don’t need to see the new Scooby Doo fruits snacks because I have no one to buy them for. I try to watch only recorded shows on TV; being able to fast forward through Disneyland commercials with girls twirling in princess dresses or hospital ads with children going into MRI machines is well worth my monthly DVR bill. The radio is never turned on in my car. I’ve got nothing against The Band Perry’s hit “If I Die Young,” but I couldn’t be happier when that song finally falls off the charts. Some things are not so easily defused. You can’t control when you decide to clean under the couch and find a little school sock covered in glitter, or open a kitchen drawer and pull out a favorite ocean-themed dinner plate. Checking the mail is a necessity, even when the Ocean Institute’s summer camp brochure is delivered.
People grieve in many different ways, and I believe as long as they aren’t hurting anyone else, they should be able to do whatever it is that makes life going forward the best possible. Some people leave their child’s toys around and keep the room exactly as it was. Others pack every last memory away. I didn’t do either of these things. I divided all of Maddie’s toys up and gave them to her friends that love her. I know to this day that those toys are played with often and in some sense are sources of comfort to the innocent children that miss their friend.
I live in a small two-bedroom condo. Maddie’s room was directly across from mine and decorated like a garden with a green shag rug as grass, big vinyl decals of bright colored flowers on all four walls, and a sun with clouds up above. The first few months after her passing I would lie in her bed, hold her pillow tight, and just sob. I couldn’t bear the thought of changing a thing, but as work on her Foundation’s behalf increased, my kitchen countertop just wasn’t cutting it as a workspace. So I decided to turn her room into a guest room / home office. I did it alone. I peeled off every last flower and butterfly decal from the walls by myself. This was something I needed to feel, to really lean in to. As heart-wrenching a task it was, it seemed only fitting to use the space for my work in honoring her memory.
Similarly, I hadn’t found the strength to take her car seat out of the back of my car. It was only when I was loading boxes of supplies to the Reaching for the Sea Stars Gala that I was able to move her seat and make room for all the invitations—invitations to a fundraiser in her honor.
Whether I had packed up every last thing or kept it all exactly the same, her memory and spirit will always surround me. I’ve kept a box of all her favorite things. I have my cherished photos of her still displayed throughout my home, like this one of the two of us when we were around the same age. These are on my refrigerator with a charm she made for me just before her diagnosis. I meditate and visit her in heaven and picture her happy and cancer free. We have the dinner parties I promised her we would have, and we don’t get any ketchup on her wings. I spend as much time as possible in or near the ocean. I paddleboard past the future site of the Maddie James Seaside Learning Center often. I wear the lavender lotion I used after her very first bath, the same lotion I used after the last bath I took with her just days before her passing. I find comfort and strength in its scent. I feel so connected to her that sometimes when I’m having a rough day, I make sure and talk to her and tell her that Mommy is OK. I don’t want her to be sad for me.
I know she is in a better place, and she gives me signs of validation all the time. It’s remarkable what is possible to see if you just open up your heart and mind to it. I’ve never been an overly religious person, and yet I’ve never been clearer in my beliefs. Losing a child is one of those things that either takes you one direction in your faith or the other, and mine has never been stronger. But that faith is mine and is something that is very personal to me. Unfortunately, I’ve had people write to me and say, “I hope you are saved so that you get to see your daughter again one day.” I’ve attended Foundation events where strangers have pinned me in a corner and insisted on putting their hands on me and lifting me up in prayer. I pray all the time, and I am thankful that people keep me in their prayers, but at public events with strangers I have about a “two-lift” maximum before it’s time to get out of Dodge.
I know that no one means any harm by what they say to me. I also know that a lot of people just don’t know what to say and tend to avoid me altogether. I totally get this and—in all honesty—if the tables were turned, I probably would be at a loss for words myself. I guess my only advice on the subject is to not say the following things, words that have been shared with me on more than one occasion:
• “Anytime something bad happens to me or I’m feeling helpless, I think to myself it could be worse. I think to myself: at least I’m not Kajsa.”
• “I have no idea how you are surviving this. If I were you, I would have killed myself by now.”
Those two statements are definitely not recommended.
Have there been deeply dark days I’ve been tempted to take a little pill to make it all go away? Absolutely. But then I know how it feels to lose a child, and I would never do that to my own parents. I have a lot of living left to do. It won’t be the life that I wanted to live, but it can still be a good life. A life surrounded by Maddie’s spirit. A life spent with my friends and family. A life dedicated to protecting the ocean she so loved, a place I firmly believe her sweet soul is at rest. In a year of horrific tragedy and loss, a lot of beauty has come out of it. I choose a life of remembering that beauty.