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Dear Levi,

Updated: Sep 15, 2021

It is now December 25th, 2019 and a Christmas without you. It has been well over a month since you left us, and we miss you. You were a life lesson and greatest gift when you were born on February 3rd, 2017. I was away at school on this day, and I was so excited to meet you, another nephew! I received pictures from your mommy and daddy, and you were the sweetest little thing. Reading week came around, and that is when we first met. You would sleep all the time and sometimes I would catch a little smile. But what we didn’t know, is that soon we would find out something no one would ever want to hear.

It was your brothers birthday when we spent the most intimate time together before your long journey with Krabbe disease. I was obsessed with you, you were smiling, just happy to hang out in my arms, and later the afternoon you fell asleep on my chest. Little did I know those were the last smiles I would see in person as I was going back to school in the fall.

You know it’s crazy how much a smile can impact someone. Just a simple muscle movement and it has so much meaning to everyone. Each smile has a different purpose and meaning to it, and that’s what makes it so special. You taught me to never take smiles for granted because you never know when you won’t see it again.

I’m back at school now, and I’ve heard that you are not so happy lately, you were crying more and more, but no one knew what was going on. Your grandma Michelle would facetime me when she was babysitting you, I would see a couple of small smiles, and I would talk to your bother. Soon after, you were having multiple trips to sick kids, I would commute from school to Toronto to see how mommy and daddy were doing and in hopes to comfort them and most importantly to comfort you. Then on November 15th, 2017 we found out what was going on; you are battling what is known as Krabbe disease.

None of us knew what that meant for us, we never heard of such a disease, but it meant that it was going to take your life, and there was no cure. We didn’t know how long you had but from my understanding is that you might not make it to your first birthday and it was rare to see your second birthday. One of the biggest heartbreaks in my life. I was frozen when I found out, instantly started crying and a million things running through my head. All I wanted was to be there for you and comfort you. You went to sick kids a couple of times after that I believe for surgery, I would come to visit for the same purpose. I just hoped I comforted you in some way, even though I wasn’t able to pick you up I would rub your head, and you would look at me, but I also wasn’t sure if you could see me. I just hoped in some way I made it a little easier for you because only god can imagine what you are going through.

One of the trips I made to go visit you, I went to the CN Tower. It’s a pretty cool thing to do in Ontario, and you were so close to it. You take this elevator to the top, and once you’re up there you can see all of Toronto and other cities when it is clear out. It was dark when I went, and when I was at the top I couldn’t stop starring at the city lights and think to myself that you didn’t get the chance to experience this. To experience life, to experience what this place on earth has to offer. I know it’s such a negative thing to say, but that’s what was going through my mind. To go from smiling and playing to having all your natural abilities taken from you. I could not imagine anyone to go through such a thing.

Your first birthday is coming up and I did not want to miss it, but I had to because I was away at school. I was there with you in spirit that you accomplished a major milestone in your life. Your purpose would not be fulfilled if I had to stop living my dreams, your purpose is to show us to go live our dreams because you never know when it will end. I learned to live with myself that I missed your first birthday.

Our encounters now are very minimal, I would go play with your brother or take him for a swim and quickly visit you, rub your head, talk to you, and that was our relationship now. Again I hope in some way I gave you comfort. Like I said before, your smile was the most amazing thing to see, and now that we don’t see it anymore, the next amazing thing was your sigh of relief when I would rub your head. I can still hear it in my head when I think about you. It showed me that you were okay, it showed me that you knew I was there.

Your second birthday is coming up, and I knew I would not miss it for the world. And guess what? I didn’t. Even though you probably had no idea what was going on other than the fact that it was louder in the house, it gave me more time to be with you, to hang out in the bedroom again and rub your head and have a little chat. These were the moments that I would soak in, and appreciate the time with you more. Most importantly I was extremely proud of you, you made it! You proved all the doctors wrong and even us, we didn’t know you were going to pass your second birthday. Remember when I was saying we all have dreams to follow? Well, you made it come true to you in your way. You’ve accomplished something no one else can do in your circumstances, you proved us wrong. That is one of the biggest accomplishments anyone could have, I’m very proud of you.

Your battle continued for 9 more months. It hurts to watch someone you love in pain, all you want to do is help them, and that is what I tried to do with you. After a while I think that you were no longer in pain, or didn’t know what was going on because of the medication you were on. I still to this day do not understand what was going on with you physically, or understand some things you were going through, the medication you’re on, etc, but I just hope you had comfort being at home, mommy and daddy holding you, the sound of your brother playing, family talking, even though it might make you a little upset at times because it can get loud. That’s all we can hope for is that you were at ease a little bit because Krabbe disease became your life, your purpose, and a lesson for everyone around you.

My last visit and last time I saw you was in September, again a quick little visit, I rubbed your head and talked to you, watched you, and soaked in every moment because I didn’t know when the next time I was going to see you. The next time I was coming home was the morning of your passing. Me coming home wasn’t planned, it was a last-minute decision, I left the 7th around 4 or 5 pm. When I arrived home on the 8th around 1 a.m., that’s the morning you left us. Later that day I found out at night that you said your goodbye and left us peacefully that morning. Your battle with Krabbe disease is now over, and you can find some peace and be at ease. I don’t like to think that Krabbe has beat you, I think you beat it. You made it further than it said you were going to make it, but at some point, you decided that you have accomplished everything your life had to offer and you said no more and took it down with you. You are the true winner here. You made sure that you took it down, you made it stop, you made it aware for us to never let it come disturb us again. You sent a message to everyone around you and beyond to be aware of this disease and to help them not let it disturb anyone else. You won!

Sometimes people struggle to find a positive side to things like this, but it is important to look for them because there is always a positive side. You taught us so much about your disease, we can now make awareness of it, we can now share our story for other people struggling with these types of diseases, we can be thankful for the disease, there are major life lessons to take from this experience that no one could ever get, you taught us how to fight, when to let go (some of use have not reached this yet), how to love, how to appreciate things a little more, to have empathy for others experiencing this, to be strong for you, to be strong for others around you, to be happy for you because you were put into our lives for a reason, there is a purpose to you. Just because someone leaves us so early does not mean your time was wasteful or to hurt us, your time has impacted everyone around you in good and bad ways, and I am truly thankful for that.

I know this is a long letter, but it helps me give some closure, and I hope everyone that was involved with you can find some too. On this Christmas Day, I gifted three drawings for your family. One of you and your brother, Papa and you, and grandma and you. These drawings are based on pictures before your diagnosis. The last few moments where we saw your beautiful smile, and we will miss it dearly. Our final goodbyes and a time to be together in your memory are on the 11th for your celebration of life. Because your life is something to celebrate for, you’ve had so many accomplishments and lessons to teach us, what’s not to celebrate? I miss you little man, you’ve taught us so much, and we’re going to miss you. I love you so much.


Auntie Jocelyn

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