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…
May 12, 2003 - January 19, 2008