Wednesday, September 12, 2012

Julian's Story

Julian's Story
By: Mimi Avery
Nothing could have enraged me more than hearing the words "He is in a better place, Mimi, you know that right?" at my 4 year old’s funeral. What better place is there for a 4 year old than his momma’s lap, his daddy’s shoulders or on the playground with his brothers?

 He was 3 years and 10 months old when I heard the words, "They found something suspicious in the back of his brain, a mass, the size of a golf ball. We are being admitted."

Those words came from my husband on March 5th, 2007 and Julian, our little boy, was about to be diagnosed with brain cancer. Four days later, Julian underwent brain surgery and after 8 hours the mass was “totally” removed. 

March 13th we learned a new word: Medulloblastoma: rare and aggressive pediatric brain cancer. I handled the mass, I handled the hospital stay, I even handled the surgery, but hearing that my baby had cancer was devastating, learning that radiation therapy and chemotherapy were in his near future was terrifying. 

A four year old fighting brain cancer was something I had never heard of and this 4 year old just happened to be my child. It had to be a nightmare, it just couldn’t happen to him, to us…

Julian was a trooper, a tough little man. We, as parents, did what we needed to do to make sure he got better and still got to enjoy being a little boy. We watched him lose hair and weight thru radiations. We watched the poison dripping into his body. Friends told us over and over that we were strong and that they NEVER could handle it. I would quote to them, "You never know how strong you are, until being strong is the only choice you have." When this happens to you, you do what you have to do. What I really wanted to say was: "PLEASE, stop saying that. I don’t want to have to be strong, I want this to all go away!!!" 
Julian was supposed to have a year of treatment, unfortunately he wasn’t even half way through when the beast came back. 

"Don’t lose hope, it will be all ok. He will be fine." Hmmm, by then I had read every study on relapsed Medullo. He wasn’t going to be fine and hearing it from people who hadn’t been in our shoes didn’t help, but as long as Julian was living, I wasn’t going to stop fighting for him. But my baby boy was tired, tired of the meds, tired of struggling. His body had had enough. We tried a couple of different oral chemos, with little hope. Eventually, Julian was robbed of all his abilities... walking, using the bathroom, holding his favorite toys and blankies, thinking well and finally his life. He was 4 years old and died, killed by cancer. 

 He was my lil man, my sunshine, my life. 

4 ½  years have gone by without him. Each day is a challenge. Most of my friends are now cancer parents. We often talk about the inappropriate things said to us, hurtful words, stupid words, off the wall words , usually said by well meaning people who believe they HAVE TO talk to make us feel better. 

I will share a few with you and maybe when you meet one of us you will remember…
When our children are diagnosed, please don’t disappear, we need you then. Come and sit in the hospital with us for an hour, let us do the talking, we will need to vent. You might think you can't handle it, remember, it isn’t about you, it is about the children. Find the strength to walk through the hospital doors, we didn’t have a choice…Don’t tell us how horrible and difficult it was when your grandmother (or your dog!) had cancer, we understand it might have been, but our children are supposed to grow up and hopefully be old enough to eventually be grandparents. 

When our children relapse, we and our doctors look at every possible options to fight again. We spend days and nights looking for the best treatment, so please try to refrain from giving us advice on what we should or should not do. Reading the words "Stop poisoning your child, let him go"  is so painful, just as being told "Why are you stopping treatment, why are you giving up, don’t you want to save your kid?". We try our best, the choices as limited and as difficult as they are, are ours to make. WE have to deal with it for the rest of our lives. 

Then, we lose, our children die… As you stand by their casket, just give us a hug, wipe a tear, no need to talk. As we look at their little bodies, once full of life but now cold and so very still, we don’t want you to tell us how beautiful they look… We know what you are trying to say, but there is nothing beautiful about the face of a lifeless child. They aren’t beautiful, they aren’t in a better place and you don’t know how we feel if you haven’t lost a child (again losing your dog doesn’t compare …)

After the funeral, everyone goes home and eventually back to their lives. Ours stop, nothing is ever the same  and neither are we. The phone calls and visits seem to slow down and eventually stop. I have never experienced it but a few of my friends, mothers of cancer angels , were told "to move on", "to get back to the living". I cant even understand that someone would think that it's ok to say to a grieving mother. 

If  we have other children, they keep us going, we don’t have a choice but to get up every morning. BUT, having other children doesn’t lessen the pain of losing one. I don’t think I could handle hearing one more time "at least you have other children" or "Mimi, you still have 3 boys who need you" . I know those facts, I gave birth to the other boys… Whether you have other children or not, when one of your babies die, part of you dies as well. Some of my friends who lost their only child got nauseous as they heard people telling them, "Well, you are still young, you can have more kids."

Instead of trying to fix us, how about listening to us, how about letting us talk about our angels, how about telling us what YOU remember about them. Don’t pretend they were never here… 

NOTHING and NO ONE can replace our babies. 

So please, please, if you ever meet us, remember, watch what you say, we aren’t as strong as you think, we get hurt easily. Mention our children’s name, we might tear up but it’s ok, we need to know they aren’t forgotten… 

Julian Avery
May 12, 2003 - January 19, 2008


Monicas Mom Musings said...

I don't know what it's like to lose a child to Cancer, but I lost a baby and I never realized until that moment how many insensitive but well meaning comments I made to people who had miscarriages or lost a baby. And you're right, just letting us know you remember means more than I think people realize. They don't want to be the one that makes us cry so they don't, but if they would stop thinking about themselves and realize that the tears aren't necessarily because they reminded us (because we never forget our babies are always in the back of our mind somewhere) it's because we are so touched that they remember. I am sorry that Julian was taken from you and your family far too soon.

Kristy said...

I'm so sorry that your son had to suffer and you and your family right along with him. I'm sorry that you are having to live without him. I have never lost a child to cancer either but I have also lost a baby and when people say silly thing like its ok you can have more I want to scream. I can't replace my child just like I can't replace my mom or dad. Children aren't interchangeable. Grrr. Thank
You for being open and willing to share your story.

Kate said...

I wish I could copy this and share it with everyone who reads Joshua's caringbridge page & my facebook wall. I have already been told by an IRL friend that I need to be focusing on my marriage and other kids right now rather than Joshua because we are going to have to move on once he dies. I told my husband that I doubt I'll associate much with that friend after Joshua passes.

This was so perfectly written. Julian was an adorable little boy. I am so sorry that he isn't still here with you.

I do believe that heaven is a better place for all of us since there is no pain, no evil, no tears, only perfection. HOWEVER, I know damn well I will be angry at anyone who tells me Joshua is in a better place right after he dies. When a mother's heart is broken (or a father's), you don't stab them more with those words. It's not comforting at all.

Anyway, big (((hugs))) and truly, I am sorry Julian was taken from you by cancer.

Lacey said...

Sweet sweet boy. I'm so sorry for your loss. Cancer sucks!! Thats all I can say because I completely understand how some words can hurt without people even knowing it!

JennaJennJenn said...

There was only one Julian in the world and that void can't be filled with anything or anyone else. I appreciate you sharing your story and what not to say to someone in your situation. It's so hard to know sometimes what to do or say. We all want to have the magic words that will make things better for that person. But those words don't exist and people need to realize that it's ok to be at a loss for words.

JennaJennJenn said...

There was only one Julian in the world and that void can't be filled with anything or anyone else. I appreciate you sharing your story and what not to say to someone in your situation. It's so hard to know sometimes what to do or say. We all want to have the magic words that will make things better for that person. But those words don't exist and people need to realize that it's ok to be at a loss for words.

Grande-Dame said...

Unfortunately so true! I recognized many comments I was also told after my 2 years old little Thomas.

I received a lot of sweet gestures. Humanbeings are sometimes tactless but most of them have a heart.

I'm so sorry for your little Julian. You're right when your say we never know how strong we are until we have to. But that doesn't mean we're not ALSO vulnerable.