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Posts Tagged ‘camp sunshine’

From the day my child was diagnosed with Rb, we were very honest with her about what was happening. She was 2-years old, kind of on that cusp of still being a “baby” and being a “child who can understand”.

I’ve met parents who have decided not to tell their children what was happening. Their children have never heard the word “cancer” in their homes. We took the opposite approach. My child was active in her port-a-cath flushes, she knew the names of all the procedures and medications. She knew she had cancer.

Throughout the years, I have been very active speaking about retinoblastoma — lecturing in college biology and health care classes, speaking at fundraisers for Camp Sunshine, and working with families through this RbNE site. My daughter always accompanied me to these engagements. She usually sat next to me and colored. Or, she would hide behind my legs. Or, she would just run up and down the aisles while I spoke.

But, this one time was different. As I prepared my speech at Operation Swan Dive, my daughter turned to me and said, “Mom, I would like to do the speech this time.” My daughter had just turned 6-years old a few days prior. I said, “Sure!” and she grabbed the hotel pad of paper and a pen. My child began to write….

When she was finished, she asked if she could practice her speech. She practiced it ONE time, and then we left for the venue.

This was her very first speech. She wrote it all by herself. She delivered it by herself. She proved that Rb kids are amazing — but we already knew that, right!

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(Note: The other blog I run is To Loosen the Mind, a blog about cancer, anti-racism, and parenting. I thought I’d reprint this essay I wrote back in Summer 2008 to this RbNE blog since it does speak to our experiences at Camp. Enjoy! -Liza)

There are so many times when I’ve wanted to give up the fight against racism. There are many of my friends and a few of my favorite bloggers who have. There are days when I sit at work thinking, “Is this worth it? Can we really heal? Can we really learn? Move forward?” There are days when I want to scream, “I quit.”

Thankfully, I know that there is at least one week during my race-filled year when I do recharge and when I am humbled. This past week, I spent our 2nd visit to Camp Sunshine, a retreat camp for families with children with life threatening illnesses. My daughter was diagnosed with cancer just a few weeks after her 2nd birthday. It rocked our world. It changed our lives. She was diagnosed with retinoblastoma – a rare eye cancer that resulted in the removal of her right eye, 6 months of chemotherapy, and dozens upon dozens of doctor’s appointments, hospitalizations, and tests.

I tend to link disability activism with racism activism because I believe that, at it’s core, our goal is to raise children who treat others like human beings in this world.

Coming to camp has been a fantastic experience because “camp” is the place where we all feel normal for a week. Retinoblastoma children get to be in the majority. They get to experience privilege. They get to experience power. Confidence. Support. Every family that attends that week has been affected by retinoblastoma. Some children have both their eyes, having sucessfully treated their cancer with laser, radiation, or chemotherapy. Some children have lost one of their eyes. Some children have lost both of their eyes and navigate our sighted world completely blind. Each family has a slightly different story, but at the heart of our experiences is cancer in our children. Families from all over the country fly in to be together, to heal, to relax, and to be in the majority for a week. One of the many things that I find interesting about coming to camp is that race, ethnicity, geography, socioeconomic status, and gender all seem to fade away. It’s a place where people find that they are bonded by their experiences with cancer, rather than the identity labels we are faced with outside of this little heaven. For most of my year, I talk about race, diversity, sexism, etc., and for this one week, none of that even enters into my mind. We are all united by cancer. Our conversations are guided around the “cancer lens” through which we all see the world. And, for many of us, that cancer lens has given us a strong faith in the human spirit.

For 51 weeks out of the year, my daughter lives in the numeric minority. She is different than any other child she plays with at school and at home. She doesn’t interact with any other children with a prosthetic eye; and, outside of the hospital, we never meet any other children her age with cancer. Camp is where she feels normal, where she is in the numeric majority. Camp is where she doesn’t have to worry about dumb things people say when they notice she only has one eye. She doesn’t have to worry about what people will say if there is goop on her eye or if her prosthesis happens to pop out while she is rubbing it. Camp is where kids talk freely about chemotherapy, about their “special eyes”, and about their radiation. And, camp is where, if they choose, they don’t ever have to talk about it at all.

Camp is also where my daughter learns how to interact with children who are differently abled. She has made fast friends with two girls , Tacey and Mayci, who both lost their sight at around age 7 from reoccurances with retinoblastoma. Through their stubborness and their insistence that they not be perjoratively treated as “blind kids”, Tacey and Mayci defy stereotypes. They defy preconceived notions about blind children. They set a new standard, a new “normal”, and a new understanding of how high our children can soar if we give them wings rather than weights. Tacey barrel races horses in her homestate of Texas. Mayci plays softball on a sighted team (and, when given the option of having a “beeping sound” signal an approaching softball, she made the officials turn off the beeping because it was annoying her!). Parents and kids watch in awe as these two little blind girls actually lead each other around hand-in-hand through the camp grounds (which, yes, gives new meaning to “the blind leading the blind.”).

At first, my daughter was afraid of Tacey and Mayci with their white canes and the blank, unresponsive look in their eyes (they both wear prosthetic eyes). But, Joli really wanted to make friends with these two girls. When the girls would walked by, Joli would wave at them and, in her smallest voice, say “hi.” This happened a number of times, but I just watched to see how she would respond, react, and adapt to her method of “waving hello” to a couple of blind girls. Eventually, Joli grew discouraged and their unreciprocated “hello” and said to me, “Mommy, I don’t think I like Tacey and Mayci – they never say hello to me. I don’t want to be friends with them.” We had to explain to her that “they can’t see you waving to them, Joli. You have to actually say ‘Hello, Tacey and Mayci! This is Joli and I am in front of you waving.'”

Simple, right? Right.

We practiced saying, “Hello, Tacey and Mayci! This is Joli saying HI to you!” Joli tried that method the next time she saw Tacey and Mayci. They, of course, said “Hello, Joli!” and were so excited to make a new friend. Tacey and Mayci began to feel Joli’s hands, her face, her coarse curly hair, and her glases. They also felt Joli’s smile that was stretched from ear-to-ear in pure happiness! Since that day, the girls have been inseparable and even keep in touch during the school year. It was that easy….

This year, our second daughter was now old enough to experience camp with her sister. Of course, the first kids we saw when we pulled up to camp were Tacey and Mayci. Joli hopped out of the car, announced she was there and invited the girls to touch her — feeling the change in her height, the shape of her new Hannah Montana glasses, and her tight braids that stretched from the front of her head to the back. Once the girls reacquainted themselves, Joli brought her 2-year old sister, Jada, over to meet the girls. When Jada first saw Tacey and Mayci, she kind of freaked out. They were touching her face, touching her hair, and “seeing” Jada with their hands. I watched Jada’s body tense up and tears well in her eyes. Joli felt it, too. Joli, the now experienced 4-year-old-big sister, held Jada’s hand and, in her most delicate way, explained what Tacey and Mayci were doing. Jada stopped crying. Jada stood still. Jada touched back.

Camp is special for me for so many reasons. This time around, though, it helped renew my faith in our children – for whom many of us parents/teachers/counselors/friends want to raise in an anti-racist world. As I re-read my post, I mentally substituted words related to blindness and disabilities with words that are related to race and anti-racism. It’s amazing to me the connection between what we experience as a family with a differently abled child and as a family with race and ethnicity at our core. Through both lenses, we constantly learn and reinforce valuable lessons about treating people as humans. We learned valuable lessons about making mistakes and finding ways to move beyond them. We teach and learn that sometimes we can control how we interact with others (saying “HELLO” to a blind person) and how sometimes we have no control over a situation (a healthy toddler being diagnosed with cancer). We learn that kids sometimes do know better than we do. We learn that kids make the same pre-judgements that we do, and that kids can also quickly learn how to challenge those pre-judgements. We witness that our children are more adaptable than we are. And, they are often more resilient than we are, too.

My daughters and their friends many not necessarily think about living in an anti-racist way. They just want to make a new friend. They just want to be treated kindly. They want to have the same opportunities as others have, and they truly want to share their happiness. Learning from my children gives me hope. On those days when I get so discouraged having encoutered a racist person, a racist practice, and an unjust system, I think back to those first moments when my kids met Tacey and Mayci – how hard it was to feel left out and how easy it was to make a friend. They don’t see one another despite their disabilities, they see one another in light of their disabilities. They have seen beauty in being different.

And they know that different is what makes them whole.

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Hi all! The dates for Camp Sunshine’s Retinoblastoma week have been announced. It will take place on June 14-19th. For more information, go to www.campsunshine.org. Don’t miss out on this opportunity to meet other Rb families and kids!

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An RBNE family will be speaking at a fundraiser for Camp Sunshine on Friday, Dec 5th at Southern New Hampshire University. If you are not familiar with Camp Sunshine, please visit their website. This is an amazing opportunity to meet other Rb families from all over the country! It was a huge moral booster for so many of us, and we often point to our Camp experience as the turning point in our lives!

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