I seldom talk about my job here or anywhere else, probably because there is so much to say. Words hard to hold back. Moments impossible to ignore, children so inspiring it is hard not to get emotionally carried away.
For the past three years I have hosted an online chatroom five nights a week where I get to hang out and talk to children and teenagers with terminal and chronic illness. Some of them live in the hospital. Some of them live at home. Some of them have a limited time to live. Some have forever, but must live their lives in terrible pain and/or discomfort. In and out of hospitals. In and out of comas. In and out of labs and testing facilities. In and out of, what we might call "a normal life."
And yet they are happy. They are seldom afraid. They are positive and thoughtful and loving. They hug one another with their words. They LOL. They joke about death like it's some kind of punchline and have in three years taught me how to laugh with them. How to be unafraid of death, and more importantly, of life. Living wholeheartedly.
Pedal to the metal. They have taught me not to fear illness, no matter how hopeless the odds seem, and not to pity those who I once called "less fortunate." They have taught me not to be afraid for Archer but to enjoy him. They have taught me not to fear giving birth to a child who needs special care. They have turned me into someone who can mourn a death and move on.
This is one of the greatest gifts a person could receive, I think. Not to be afraid. A mother especially.
When Archer was born healthy, I was almost shocked. As a young mother with no parents as friends, all I had known were sick children. I felt like I had won the lottery having a healthy baby. I wondered, "why me?" Why am I so lucky? Because I was. I am. So lucky.
Quite often there are children in the chatroom who disappear. I like to think that maybe they healed miraculously and no longer need us. I like to imagine their tumors shriveling, their cancer cells blowing away like dried leaves. I often pretend that
Pediatric HIV and
Muscular Dystrophy and
Cystic Fibrosis are like colds, soon to pass after some rest and chicken soup. That when the children disappear from the chatroom they will reappear in school, Jansport backpacks and books under their arms. Back to health. Back to normalcy. Back to cute boys and baseball and Winter Formals. Back to childhood.
One of my favorite children recently disappeared. She has stage four Leukemia but we don't talk about that. For the past two months she has logged on when I work and we have talked. About everything. About cupcakes and cute boys and riding horses. We've danced and played games and wrote silly raps. We made-believe I could bust her out of the hospital so we could spend a day at the beach. She hadn't been to the beach in two years. She hadn't been out of her hospital room in months. At age 13, the last time we spoke she was 48 pounds. Part of her brain was missing and even still, she was brilliant. Her heart had been replaced and yet she had more love inside of her than almost anyone. Her legs were too weak to walk on, yet she had the power to move everyone around her.
Wherever she is, I am at peace. If she does not come back, I am at peace.
Before I was a mother I wished with all my might that the children would survive so they could have lives of their own. Now, as a mother I wish for their parents. I wish for their strength and for their ability to reach beyond the fear and to know how lucky they are to have known and birthed such extraordinary human beings.
When I found out I was pregnant, I had the same fears all mothers have. Will he be healthy? Will everything end up okay?
A mother's worst fear is of course that he will not be okay. It is unnatural for a parent to bury their child and yet women have been doing so from the beginning of time, finding the strength to move on because we have the capacity to do so. We do. The reality is that there are many children in pain. That they suffer, that they die.
And yet we keep turning away when we see it walking down the street. It keeps us safe and our children and our families.
Ignore the symptoms. The sick belong in the hospital. Wear a mask.
Every time a head is turned, a child feels more isolated.
It isn't real. Like the monster under the bed. I need a nightlight and a pillow for my eyes. Mommy? Make it go away.Disease is all around us. Children are dying. Don't look away. Don't pretend it isn't so. Don't hide the truth from your children.
When you hide the truth from your children, they think its okay to turn away.The
organization I work for was launched so that sick children could interact with other children like them and feel less alone. It's very common for a sick child's friends to abandon him because they are afraid of what they don't understand. This is natural. A child cannot be faulted for being afraid of chemotherapy or paralysis or losing a friend. It is up to the parents to educate the children. This is not something they teach in school.
Ignorance keeps inspiration from happening. Ignorance separates the sick from the healthy when there is so much to learn from either side. The sick depend on the healthy for physical survival but the healthy do not look to the sick for emotional healing. And we should. It is impossible to be depressed around a beaming child who, unafraid and uninhibited will ask you to dance with her in her hospital gown. It is hard to be afraid when those we expect to tremble take our hands to hold
us in place.
"Everything is going to be okay, I promise." Sometimes the children say this to each other. Sometimes they say it to me.
Their screen names are livelife and allsmiles and sunshine14. They do not take life too seriously. They do not point fingers or put blame on things like adults do. It is not anyone’s fault that a child is born with HIV. She does not think so. She thinks she is lucky for having the strength to take on such a challenge.
Children are not jaded. They do not live in denial. Never once has a child said "why me?" Never once has a child wished he/she had never been sick. Not in three years.
"I am not afraid to die. I am afraid for those I will leave behind."
"Because my mother's in denial."
"My father's in denial."
"My parents and grandparents are in denial."
Turn away, toward the light, where everyone is healthy and alive and enjoying their macaroni & cheese. Where children live to become adults and mothers give birth effortlessly to healthy babies. Ten fingers. Ten toes. Turn away from the bald child in the supermarket. You don't want to stare. You don't want to know. Wait, you looked. You shouldn't have looked.
Sometimes it's better to stare than to ignore.
Because every day, there are children disappearing. They disappear from our chatrooms, passing from one world to another. They disappear in the grocery store when we pretend we don't see them out of the corner of our eye. They disappear when we cannot bear to look the truth in the face and see that sickness is everywhere. That even when our children are healthy, there are parents who aren't so lucky.
We can prepare ourselves for cancer in adults. Wear
bracelets.
Create Cancer Awareness months, but what of the children? Why can't we be just as aware that there is such a thing as
Hepablastoma? Why can't we talk about it openly? Like we do with Breast Cancer and MS and Parkinsons? Why must we turn away instead of discussing the tremendous grief we feel when a friend's newborn child is diagnosed with a chronic illness, when God forbid the baby does not have ten fingers and ten toes?
But I don't know what to say. Only because you don't want to know. Because it can be hard to
know. Because it is a parent's worst nightmare...
But what if we discussed it openly? Perhaps if we weren't so afraid.
Think positive! Think positive! It won't happen to me, or my child, or my child's friends...Open your eyes. There are children who are sick and
different and in pain. There are children in need of heart-transplants and kidneys and hugs from their peers who turn away, unable to handle the truth. Here. It is happening now! In your own neighborhood.
Please don't let the children disappear without acknowledging them first. Please don't hide the truth from your own kids. Please don't tell them to look away, from
Leukemia and Pediatric HIV and
Sickle-Cell Anemia. From Cystic Fibrosis and
Crohns disease and Muscular Dystrophy,
Lymphoma and
Neuroblastoma and the countless other pediatric diseases.
Every time you look away, the children disappear.We will always be afraid of what we don't know or can't understand so we must educate ourselves and try to be more understanding, so we can pass that on to our children, children who right now are turning away at the sight of a bald child in a wheelchair,
because it isn't nice to stare.
I am the luckiest woman in the world to have been able to meet the children I have met. I am so lucky to have the perspective. To have been given the gift of reality. Of seeing sickness every day.
Because it's everywhere. Because we should not be afraid of what we do not understand. Just because there are shark attacks, does not mean we shouldn't go night-swimming. Just because there are plane crashes doesn't mean we should not see the world. Just because there is illness and sickness and children born with health problems does not mean we should be afraid for our futures. Just because there is death does not mean we should turn away from life...
These are the words of the children I have met, children who aren't afraid of death, but are afraid of disappearing, children who have more strength than we can possibly imagine and who, if given the chance, can tell us, "everything is going to be okay."
Let us open our eyes for them. And let us open our eyes for our sakes as well, because they're right, everything is going to be okay.
GGC
Yesterday at the gym I came upon four women seated neatly in the "lounge" area of the daycare. They looked nice enough. Khaki pants up to their armpits. Mom-dos. Four thousand pounds of crap at their ankles. Typical garden-variety "lounge-mamas."
