“A year ago, my son, Aiden, was diagnosed with an atypical teratoid rhabdoid tumor or AT/RT. It’s a rare brain cancer that affects about 65 children a year. We spent 4 months in and out of the hospital, fighting this beast. We went through surgeries, chemo, and transfusions. We fought off infections and spent days and weeks apart. There were complications at the onset of his second brain surgery and he died. He was 20 months old. His life was so short and the time between diagnosis and death so fast, I wonder if I dreamt it all. In a lot of ways, our family was still processing Aiden’s diagnosis when he died.
Sometimes, when I’m struggling to get out of bed, I like to go through my pictures of Aiden. I start from the day he was born and scroll through each one. I never thought I’d be so grateful for the time stamp feature or live photos. It makes my memory of the moment more specific, more real. The camera roll on my iPhone serves as a record he was here and he was mine.
I slowly scroll through each photo and smile as I see how loving his older siblings were towards him and how happy he was to be a part of our family. We all gushed over his big blue eyes and single dimple on his left cheek. One of my favorite pictures is of all three kids in the backseat of the car. Aiden is in the middle and his foot is in my daughter’s mouth. Her response, when asked what she was doing was, ‘He’s just so cute.’ From his chubby hands to his round belly, he was delicious.
When he was born, my husband and I struggled to come up with a name. It was the same with our older children. We both had our favorites but couldn’t or wouldn’t compromise. In the hospital, my husband picked up the baby under the arms but the way he had his thumbs in his armpits caused his fists to smush up against his cheeks. His face had this crooked grimace and he looked like Jason Statham if he were in a boxing movie. I snapped a quick photo and sent it out to friends saying, ‘Welcome to the world, Smusherface!’ The nickname stuck with him his whole life and even after.
As the third child, Aiden was like a king sitting on a throne and the four of us were his court jesters, there to entertain him. We were all more than happy to be at his beck and call, and he never wanted for anything for very long. One evening, when Aiden was around 4 months old, I was making dinner and he started fussing. I knew he was hungry but I had to get dinner on the table if we were going to have any chance of eating before midnight. All of a sudden, he was quiet. I peeked in the living room and saw my older son laying with him on his mat entertaining him. I snapped a quick picture grateful to have captured this secret moment between siblings. I can’t help but wonder what adventures they would have shared were he still alive. Sometimes I see pictures of him and wonder, ‘Is this when the monster started growing?’
The pictures remind me too of Aiden’s favorite things like his love of pizza. If you sat down at the table with pizza on your plate, he would demand you shared. I have a great picture of my husband feeding him a whole slice. The mischievous grin on his face as he’s taking a bite is priceless. On what would have been his second birthday, we sent pizza to the nurses and staff on 4 East at Children’s Hospital Los Angeles. I have a great picture of them all huddled together in the break room. One of our favorite nurses was holding up the picture of Aiden eating pizza. I was struck by how much I miss them.
Outside was Aiden’s favorite place to be and he loved his red big wheel. I have about a dozen pictures of him playing on it. You can tell I’m trying to get a ‘good’ one because I have ten of the same shot but nine of them are out of focus or he’s not looking at the camera or he’s making a weird face. When I see these pictures, I breathe a sigh of relief I’m not organized enough to go through my photos. I cherish them all because this is all I will ever have of my baby. I do have one perfect shot of him though. He’s in his matchy-matchy dog pajamas sitting backward with his feet hanging, still too short to touch the ground. His tiny fingers are wrapped around the grey seat. He’s looking directly into the camera with a smile just big enough to show his dimple. This is the photo we used for the poster at his funeral. Almost nine months later, the poster is still sitting on the floor, leaning up against a wall so I can see it every day.
As I scroll, I always slow down as I get closer and closer to the day he was diagnosed. Maybe I’m trying to stop it from happening. Maybe I just don’t want to see my perfect boy sick. Maybe I don’t want to be reminded of how his story ends. It feels like watching the sand drain out of an hourglass, but desperately not wanting it to.
The summer before he was diagnosed was one of the best we’ve had as a family. Aiden was starting to talk and on the verge of walking, and we were finally coming out of the haze of having a baby and heading into toddlerdom. In other words, things were about to get really fun. The pictures I took that summer seem so relaxed. The people in them have no idea what terror is waiting around the corner.
We rented a house on a lake in South Dakota. I have a cute shot of all three kids playing cards. Aiden is wearing my favorite hand-me-down from big brother. The older kids have wet hair and are playing Go Fish and Aiden is trying to copy them. I look at this picture and wonder where he went. My biggest worry right now should be tantrums and potty training not trying to navigate this seemingly bottomless pit of sadness, anger, and rage at how unfair it all is.
At the end of our trip, we took a family selfie on the back deck of the house. I remember laughing about how hard it was to get us all in the frame and looking at the camera at the same time. This became one of the few pictures I have of all five of us. Aiden died in November and I used this picture for our Christmas card.
The week after we got home from this vacation, Aiden had his first of many MRI’s and our nightmare began. This marks a before and after in the story of our family.
The pictures I have during our four-month battle with cancer are sometimes difficult to look at. I have a bunch of pictures of rashes and wound sites I took so I could show the doctors to see if it was something we should be concerned about. I usually scroll pretty fast over the one I have from right after his first surgery. He has tubes coming out of his mouth and nose and brain. I wanted to hold him so badly, to let him know mommy was here. Instead, I had to sit on my hands in the corner of the room while a dozen doctors and nurses buzzed around him making sure he was safe. It would be three days before I would hold my baby again. At the time, I thought that was the longest I would ever have to go without feeling the weight of him on my chest.
I have funny pictures too. During Aiden’s first round of chemo, he kept scratching at his central line so the nurses put him in this tight mesh shirt. It reminded me of Ali Wong’s joke about the ‘Asian pear’ underwear they give you after you give birth. I have this picture of him with this annoyed look on his face and the nurses and I can’t stop giggling. I also have a bunch of screenshots I took while FaceTiming with my husband and the older kids. They make silly faces still trying their best to make Aiden smile. Some days these evening phone calls were the only time he seemed to perk up. Seeing these three souls love on each other both broke my heart and gave me hope at the same time.
I have some really beautiful pictures too. Like the ones of his first crooked smiles after surgery or the one of him wearing a hat that says ‘Never Give Up’ where his blue eyes are the size of dinner plates. I could stare into those beautiful blue eyes forever.
And then like hitting a brick wall, I come to the end. There will be no more pictures of my Smusherface. It never feels like it takes long enough and I have to will myself out of bed. The last picture I took of Aiden is a selfie of me snuggling with him as he slept. His cheeks smushed up against my chest. His eyes are partly open. I have a million pictures just like this. It seems so anti-climatic. It feels like the final picture I have of my son should stand out in some way. It seems like the last photo taken of my boy on earth should reflect its importance, but no photo could ever do that.
What I want is not to have a ‘last picture’ at all. What I want is to have him here, with me, and his dad, and his brother, and his sister. What I want is for him to have never had cancer in the first place.
Shortly after Aiden died, I had to get a new phone. I was terrified of losing everything. The woman in the Verizon store was so kind as I made her double and triple-check that everything had been transferred over. I cried as she erased my old phone.
It’s been almost nine months since he died and today, it feels very heavy. There are times when I just feel broken all over again. This is one of those times. This is where I am today. Thank you for listening.”
This story was submitted to Love What Matters by Emily Henderson from Santa Barbara, CA. You can follow their journey on Instagram, their website, and their Fundraiser. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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