CELEBRATE LIFE'S LITTLE WINS

It's August 17th which, in our house, we call "Diagnosis Day."

Back on August 17, 2005, our daughter was diagnosed with a rare and aggressive pediatric eye cancer: retinoblastoma. It's now 2017 and she is a 12 year survivor of retinoblastoma, and we honor this day as the one that changed our lives. Today, we honor Diagnosis Day; tomorrow, we celebrate "Survivor Day" (caaaake and ice cream!).

Given all that is going on in our world, it's easy to get caught up in all the sadness and heartbreak and anger. Believe us, we felt that so explicitly on the day our child was diagnosed with cancer. Today, Diagnosis Day, especially, gives me hope. We never thought anything would be better on the other side. We never thought we would get through it. We never imagined a day when we would stop crying.

Today, it's a nice reminder that we all go through wicked and evil times. And, with community and support and facing the fear, there is some good that happens at the end.

Twelve years ago, Jorge wrote this email to friends and family (this was before Facebook and Twitter and all that jazz). We thank God every day for Joli and her team of doctors. And, we thank God for all of you who supported our family during those rough times.

While the email, and her announcement of cancer, was sad, I'm grateful to read it on a day like today. It gives me hope. It gives me courage. It gives me faith that things will fall on the good side of humanity. 

Happy Diagnosis Day, Joli!

WRITTEN ON AUGUST 19, 2005 (two days after diagnosis) BY JORGE:

Hi, Friends!

So, in the last 48 hours a lot has happened in our little family.

My daughter's decided to become the world's smallest and cutest pirate... complete with eye patch. :)

We have spoken to or emailed many of you personally, but for those who may not know the whole story, here's what happened...

On Wednesday we took Joli in for what we thought was going to be a routine visit to the doctor. My father-in-law, who's an ophthalmologist, had noticed that Joli's right occasionally would "wander". He said it was pretty normal for kids her age to experience that, but he recommended that we go see a pediatric ophthalmologist and learn how to correct it as early as possible. So, Wednesday morning we went to the doctor believing that, at worst, Joli might have a lazy eye. No big deal.

When the doctor looked into Joli's right eye, his reaction was pretty immediate. He let us know that there was a large tumor growing inside of Joli's right eyeball. Yet, Liza and I had no way of knowing. That may seem impossible, but it's true. The doctor said it's quite normal for something so dramatic to go unnoticed because kids bodies are so adaptable. Apparently, as Joli's right eye faded, her left eye with its perfect vision took over.

Liza and I were floored. But, things got even more surreal when the doctor told us that he was certain that Joli's right eye needed to be removed as soon as possible.

She has a very rare type of cancer called "retinoblastoma". It occurs in about 1 in 20,000 kids.

Liza and I, on cue, fell apart. We took a breath and then fell apart again.

And then amazing things started happening... the doctor made a call to Massachusetts Eye and Ear Medical and got a hold of a guy named Dr. Mukai. It turns out that there are only five or six doctors in the entire country who specialize in this type of cancer and one of the best, Dr. Mukai, worked a few blocks away from us. Though he had two surgeries scheduled for that day, he made time, in between surgeries, to meet with us and examine Joli's eyes. He confirmed the previous doctor's diagnosis-- Joli's eye needed to be removed to eliminate the risk of the cancer spreading.

[insert me and Liza falling apart again here]

Dr. Mukai was incredibly sensitive and comforted us with his words and his knowledge. Apparently, in 90% of cases, when there is tumorous material in only ONE eye, if the eye is removed, the child will have a full recovery without the cancer reappearing and without chemotherapy or radiation treatments.

The next day, Liza Joli and I, surrounded by our families and the thoughts and prayers of friends and family all over the country returned to the hospital to have Joli's eye surgically removed.

The operation took a little over five hours and when Dr. Mukai re-emerged, the news was good.

There is no cancer in Joli's left eye and the right eye was successfully removed.

Liza and I fell apart again, but this time it was a good kind of disassembly. :)

When we went down to the recovery room, Joli was groggy and crying. Liza picked her up and she stopped crying immediately, curled up in her lap, and fell asleep. A few minutes later we were able to leave recovery and head up to her room, where the rest of the family was waiting.

And here's another amazing part... as we left recovery, Joli lifted her groggy little headed, looked over at the nurse's station and waved. "Thank you. Thank you. Bye-bye," she said.

My kid ... rocks.

We spent a few hours up in her hospital room, letting the anaesthesia wear off. There was lots of laughing and lots love in the room. Joli talked to everyone, but only wanted to be held by mom and fed juice by dad. ;)

So, we returned home last night. Joli slept in bed with us, occasionally complaining that her patched eye was "itchy", but then quickly falling back to sleep and snoring.

We think the worst is over. We'll be going back to the doctor today for some follow-up and Joli will have an MRI next week to verify that there is no cancer in other parts of the body.

The healing process takes 6-8 weeks and, after it's complete, Joli will be fitted with a prosthetic eye created by one of the best teams in the country. Liza and I have seen tons of pictures of other kids who've been fitted with fake eyes and it's friggin' incredible. You simply can't tell that the eye is fake. It even moves like a normal eye.

So, by the time many of you see Joli next, you won't be able to tell what occurred. :)

Friends, Liza and I want to thank you for your thoughts and your prayers. We were both overwhelmed to learn that so many of you were thinking of us these last few days. I sincerely believe that those thoughts and prayers made a difference. I sincerely believe that you played a part in our daughter's well being and we thank you so much for that.

The last 48 hours sort of stunk like ... , but the next few days are already smelling like roses. :)

Love-- Jorge, Liza and Joli

A Battle Won

"He lost his battle to cancer." Anyone who has ever held the hand of a person receiving chemotherapy knows the type of fight that it takes to have cancer.

I remember the first time my child received chemotherapy. Just after having her port-a-cath surgically inserted into her tiny chest, we were upstairs in her hospital room preparing ourselves for the procedure that would change her life. In just a few moments, my 2-year old daughter would be a cancer patient. Though her retinoblastoma diagnosis did, indeed, make her a cancer patient, it was the chemotherapy that really drove it home for us.

Nurse Lori walked into the room. "So, are you ready?" she said to me, trying to be both cheery and serious. Nurse Lori snapped on her thick rubber gloves, pulled on a protective apron, covered her mouth with a paper mask, and then put down her plastic shield drawn over her eyes. "What is that for?" I asked.

"Yeah, uh, it's to protect me. From the chemo agents. In case they spill," says Nurse Lori tentatively. She knows how ridiculous that sounds.

"So, I know this sounds stupid, Lori. But, what is going to protect Joli from this chemo? The very thing you are protecting yourself from is going to be poured into my kid's veins?" I said sarcastically annoyed, as if I was going to prove a point that she had never heard in her 20+ years of oncology nursing.

I'm mad. I'm confused. I'm scared.

Unfortunately, the routine got easier each time. Each time, I got used to the dance of protection and poison. Each time, I held my daughter close to me, while the nurses warned that I could be harmed if chemo spilled on me. Even when I changed Jo's diaper, I had to wear protective gloves due to the concentration of chemotherapy in her urine.

Each day -- even now, 4 years post-diagnosis -- we still fight the fight. We are no longer in active chemotherapy, but cancer and its residual effects haunt us each day. Personally, we worry about her prosthesis, her implant, and hearing loss that resulted from chemotherapy. We hear from her friends about tears in the tissue that holds the implant. We are devastated by news that a retinoblastoma survivor has a recurrance or a secondary cancer. And, each time we hear that a life has moved on because of cancer, we know that we are not immune.

In the past few months, a number of celebrities have been featured because of their cancer battles. And, without hesitation, the headlines and announcements all begin with "... has lost the battle with cancer."

Every day, every morning, every hour is a battle won over cancer. Certainly, moments and opportunities are lost. We lost the opportunity to send my daughter to pre-school at age 3. We lost the opportunity to just be a kid; while other kids were saying their A-B-C's, Joli's most often used words were "chemo, prosthesis, and cancer."  We lost the experience of seeing a 3-D movie because, after all, you need 2 eyes to see in 3-D.

Each day is a battle won over cancer.

Our cancer book will never be closed. In fact, each day, a new sentence is written. Each month, a new page. Each year, a new chapter. And, when the time comes to close the book of Life, it won't end with "a battle lost to cancer", it will end with "the story was over; a battle was won."

Our heartfelt condolences to the many people and families who bear the scars of cancer. Your battle was won. Your loved one's battle was won. The day you were diagnosed, you won. Each day you walked into chemotherapy or radiation with your head held high, you won. Each day you decided to fight, you won. And, if that day has come when you didn't want to fight anymore, it's not because you lost. It's simply because you have decided that your story was told; your impact was made; your gift was given.

We thank you for the gifts you leave behind for all of your loved ones. And, that gift is the story of your courage, your fight, and your love. For because of your battle with cancer, you've helped us to write our own sentences, our own pages, our own chapters. And, in the end, it wasn't because you "lost a battle", it was because you "won our hearts."

While the recent celebrity news has sparked this entry, I am dedicating this to my college friend, Becky, whose mother in law is writing the next chapter. You are in my thoughts in a very special way. May you always keep singing.

The Unexpected

I'm back, all! I know it's been a while since I've done any serious blogging. Thanks to all the people who I "borrowed" from and those who entertained me by reading older posts. I'm balancing lots of different duties, and in the past few months, other priorities forced their way into my life :) But, I'm back! Back to writing, back to blogging, and back to exploring ways that race, health, parenting, and living collide.

So, a theme that I've been noticing these past few days is "the unexpected." It's "the unexpected" type of moments when you realize that something you said or did had an effect on someone above-and-beyond what you could have imagined.

The past Saturday, I spoke at an event to raise money for Camp Sunshine - an amazing healing camp that my family has attended in the past. Last year, I spoke about the importance of feeling normal when you have cancer.  I spoke about how my life was filled with materialistic wants, shy needs, and a superficial sense of importance. When my child was diagnosed with cancer, all of those characteristics and qualities flew out the door -- instantly. When I held her in bed, with her chemotherapy dripping into her tiny 30 lb body, I couldn't help but see flashes of what life might be without her. In the wee hours, when the hospital floor was quiet, I morbidly imagined what I would say at her funeral. I pictured her little coffin, a receiving line of relatives dressed in black, and me - crumbled on the ground - wishing I could just tell her, one more time, "I love you."

It's moments like those -- an unexpected diagnosis, an unexpected bad dream, an unexpected taste of vomit in the back of my throat -- that spin me into appreciating what I have; and feeling bad for people who yearn for materialistic belongings. For, if they had to come close to what I felt (what I feel) for my child, they would realize that the new car/the largest television/the cutest handbag, isn't worth shit.

At the event last year, I remember saying the line, "If you have your health, you have everything. Because if you don't have your health, you don't have your finances. You don't have your sanity. You don't have your tomorrow. You only have your today."

Just before I went on stage to deliver my speech,  a woman approached me in tears. She told me that my speech changed her life. This past year, her husband lost his job, and the family was stressed over their finances. They kept reflecting on what I had said about "having your family and your health", and that's what got them through their tough time.

Joey's Special Eye

When my daughter was diagnosed, I found out I was pregnant with our 2nd child. I jse1jwasn't sure how I was going to explain this to our new baby. How do you explain "your sister has a hole in her head, and it's because of cancer"? I talked with my sister -- writer, Grace Talusan -- and she came up with a fantastic coloring book for children that described, from a sibling's viewpoint, the cancer and prosthetic. While it was published by the Eye Care Foundation, I think we always imagined the coloring book to be something that we just use in our home. A few years went by, and we embraced our own personal copy of the coloring book. I contacted the Foundation a few years later and asked if they were going to reproduce it. There wasn't quite a demand, but I was able to purchase 100 copies to send to other Rb families.

The following year, I returned to Camp Sunshine with additional copies. As I began to hand them out, some families were so surprised to see a coloring book - just what they were looking for! But, then one family came to me and said, "Oh, no thank you. We already have one." I admit, I looked at them like they were crazy. "Well, if you don't want one, that's fine," I said somewhat insulted. "No, really. We have one. Our doctor's office gives one to every Rb kid." I immediately called Grace to tell her that her book was being distributed in a hospital 3,000 miles away!

I checked Grace's site on the day of my daughter's cancer anniversary, and realized that she had posted pictures of kids around the world holding the Joey's Special Eye book! The kids pictured were in Mexico!

We never thought the book would have this kind of reach -- completely unexpected. And, yet, it's so rewarding to know that Grace's book -- Joli's story -- is being told around the world.

Richard

photoOur friend, Richard, has been having a hell of a year. His son had been diagnosed with the same cancer as my daughter. His son's cancer was very aggressive, and he, too, ended up losing his eye after over a year of awful treatment. Once they came to peace with their son's eye, Richard was diagnosed with a very rare cancer. He's been fighting for his life for over a year now. We've been raising money for him through Facebook, and using our "status updates" to promote our cause.

In the midst of our status updates, an artist friend, Jeff McComsey, felt compelled to draw Richard. He doesn't know Richard, never met him, and other than living in the same state, has nothing in common with Richard. Yet, he began drawing. He drew Richard as "Superman." Jeff's drawing arrived in the mail on Richard's first day home from the hospital, and this brought him such strength. I know Richard didn't expect this, and I'm quite sure that Jeff has no idea how meaningful his drawing is to Richard, his family, and friends. Yet, it's this unexpected gift of kindness during an expected battle with cancer that completes this circle.

What have you done that was unexpected today? What unexpected impact will you make on someone's life?

Handpicking Religion

crossOver my lifetime, religion and faith have taken on a few different incarnations, if you will. When I was younger, like many in the suburban Boston area, I went to church with my family - every Sunday, we all piled into the family van, and depending on the time of the Mass we wore either a nice skirt/shirt (10am Mass) or a pair of jeans/sweater (Noon Mass). In the early years, Church was a great time for families to get together. Our church used to host a "coffee and donuts" gathering after Mass, and I vividly remember running around with my brothers, donating $.25 for a chocolate frosted donut with sprinkles, and hearing my parents laugh and tell stories with others from Church. They would wait down in the gathering hall while the children made their way over to Sunday School classes in the upstairs classrooms. Soon, the coffee and donuts routine ended, and I got to the age when I would drive myself to religious education classes.

When I got to college, I no longer went to Church. After Saturday nights and early mornings recovering from hangovers of the college-variety, the last thing I wanted to do was go to Church. Scrambled eggs, hash browns, orange juice, coffee and bagels with my also hungover friends soon replaced singing, Communion, and gospels.

In my senior year, I remember going to Church just prior to the Easter break. I'm not sure why I went - likely peer pressure of some sort (or Catholic guilt). I ran into a friend of mine at the back of the college chapel and said, "Hi, Lina! Gotta love church, huh?" in my sarcastic "oh-you-gotta-be-here-too?" tone of voice. Lina caught me off guard and said, "I am filled with love and joy today! I'm fantastic! Jesus Christ has Risen! It's an awesome day!" The childlike excitement in her eyes, from a woman who I considered academically brilliant, surprised me.

Huh? What the hell was that?, I thought. Seriously? Is she serious? That much joy over a story in the Bible?

pewI proceeded to an empty space in a pew, went through the Catholic Calesthenics of up-down-kneel-sit-stand-sit-kneel, and quietly listened to the readings and homily. But Lina's excitement was stuck in my brain. How could someone be this excited about religion? About the day before Easter??

Graduate school wasn't much different. I went to school in New York City where it was easy to be both surrounded by vibrant religious communities and disheartened by the poverty, cruelty, and human violence. I had gone to a religious service at a charismatic Christian church one Sunday with a friend of mine, and we spent well over 2 hours enveloped by singing, worship and praise, joyous and fervent prayer, Amens and Yes Jesus shouts. At the end of the service, we walked out the door and watched church members embracing wishing others to "Have a Blessed Day." But, not more than a few feet from the church, we then saw two individuals cursing up a storm as they fought for a parking spot. A few feet from them was a homeless woman -- who I would see there for the next 2 years. Not far from her, a group of young boys exchanged a verbal tennis match of profanity and insults about someone's Mama.

Needless to say, my Amen feeling left my body pretty quickly, and reality set in.

Throughout the next few years, as a result of living in NYC and working in a number of diverse colleges, I struggled with my Catholic upbringing of how my faith viewed gay relationships and marriages. I believe that love is love. That families are families. During this time in my life, my close circle of friends were majority gay couples, and I listened to their life pasts, presents and futures. I listened to their stories of faith, families, acceptance and denial. I struggled with understanding how my own faith discriminated against their lives, against them.

After leaving NYC, I began working at a Quaker school. And, while very few people there were actually Quakers, the philosophy drove everything we did there. Each week, I participated in Meeting for Worship and that was completely different from anything I had ever known. Silence. We entered in silence. Sat in silence. Listened in silence. And, the elders ended with a handshake. There was no priest guiding the service. No reader telling me about the Bible. No holy hands delivering Communion. It was me and God.

People often ask me what impact faith had on me when my daughter was diagnosed with cancer.

My daughter was 2-years old, and I had just started working at a Catholic college. While my practice of faith was pretty sporadic, I still believed in a Greater power (be it She or He). But, when she was diagnosed, I struggled. I was mad. Pissed! What kind of God would do this to a child? What kind of God brings an innocent child so close to death?

When others found out about my daughter, I received hugs/cards/emails all with the phrases "We're praying for you" or "Trust that God will guide you" or "God will be with you." Really?, I thought. Because this feels awfully f-in lonely. My family members wanted to pray over me for strength, invoke God during church, or offer up community prayer circles for my daughter. I found this just pissed me off. But, I never said anything because I knew the religious piece served a different purpose: it helped to comfort those people. Heck, if praying makes it easier for YOU, then go for it. If praying makes you feel like you're doing something, then go for it. But, for me - nope. Not here. Not now. Not while my child is wearing a paper thin gown with an IV hooked up to poisonous chemicals being delivered by a nurse who is in a full body armor to protect herself.

I didn't pray to God. But, I did wish for hope.

But, of course, years of Sunday school weren't lost on me. In the quietest hours of the morning, when I would sneak into my daughter's room -- just to make sure she was still alive -- I would kneel by her bedside and pray. I prayed that God wouldn't take her from me. I prayed that God wouldn't let her suffer more than she had to. I prayed that God would give me strength to both protect her and to let the baby growing inside of me be cancer free.

But, most of all, I prayed that God would let me switch places. I prayed that God would put the cancer into my body and spare hers. I prayed that God would just give her a break, let me wake up from this nightmare, and that all would be just a bad dream.

Then, morning would break and we'd be back into our routine. Daily shots for my daughter. Anti-nausea medication just after breakfast. Nurses visits to flush her port-a-cath where she received chemotherapy. And, religion and God would be forgotten until the next wee hours of the morning.

A few years have passed since our daily cancer trips, and now our lives resume normalcy for a few months at a time. And, religion has found its way back.

Every Sunday, the girls and I go to Church. Catholic Church. It gives me peace. I leave Church each Sunday and am happier. I'm renewed. I feel closer to my children when we are there, and I feel even closer after we leave. I find joy when I see them make the sign of the Cross on their chests -- sometimes they get it right, usually they get it wrong and poke themselves in the ears and belly buttons. During the car ride, they complain that Church is going to be boring and they don't like having to be so quiet. Then, we arrive and sneak into a pew behind their friends, and they are all smiles again.

This year, my husband and I decided not to buy the children more than 2 presents. He's doing it because buying so much stuff is wasteful and materialistic. I'm doing it because I want the girls to know the meaning of Christmas.

But, what is the meaning?

hpdjesusDo I believe the meaning is the Birth of Jesus Christ? Do I believe the meaning is family, friends and giving thanks? Is the meaning chocolate waffles, candy canes, and wishes? Is the meaning that we give more than we receive on this day?

When I read the story of the Nativity to my children, I tend to emphasize the "Look what nice people did to help out a family"  -- just like nice people helped our family when you were sick -- than the "Jesus Christ was born today" story. Will this change? Develop? Will the kids want more from the story? Less?

All of this has been coming to mind in the recent news about Rick Warren giving the opening prayer at Obama's Inauguration. I find so much of the commentary - from both sides of the "wings" -- fascinating. Will our view of religion and the religious change? Is the goal to change the minds of religious conservatives or just to get the conversation going?

Is there a difference between "I disagree with you" and "I disagree with your life and identity?"

Can religion be fluid? Is it wrong to handpick religion?

Happy Merry Solstice/Christmas/Hanukkah/Kwanza/Dec 25th. Work is slow right now, so hopefully I can catch up on some blog posts!

A Day without Race

I know.. I know... I'm obsessed with talking about race and diversity. Well, that's not entirely true. The times when I'm NOT obsessed with talking about race and diversity are the days when I have to think cancer. I've written a few times about how I feel when my life leaves the realm of race and entres into the world of cancer. My family has been wrecked with cancer -- many have survived; others have not. I'm as active in the cancer world as I am in the race world. And, while I blog about the connections between racism and disability issues, the issues of cancer and race rarely cross paths for me.

So, pardon my detour from blogging about race today -- it's a blog post about cancer. But, it fits into the "to loosen the mind" philosophy in that the intellectual and emotional rationalizations about cancer do force me to think of things differently and reflect on ways to stay flexible in my thinking.

Posts for a different time are how my family was treated when my kid was diagnosed with cancer. Feel free to catch up on some of those!

No, this one is for me. I'm considered a pre-vivor -- someone who is genetically dispositioned to develop cancer at a far more likely rate than the rest of the general population. And, while I've escaped it's ugly claws for now -- my sisters have not been so lucky -- I can't help but think of it as ticking time bomb. I always get this way before an doctor's appointment: sleepless, anxious, trying to tell myself not to worry, but endlessly worrying.

Let's just put it out there -- cancer sucks. I've tried to loosen my mind around this one. But, the truth is, it just plain sucks. I know that I've become a better, stronger person because of what we've gone through having a child with cancer. And, trust me, I'm thankful for the way that has changed my life for the better. I embrace each day. I realize the gift of waking up and hearing my child's voice every morning (believe me, there were mornings where I would be just hope and pray that she was healthy enough to wake up). Material things are unimportant. Time with my family has replaced time to myself.

It's usually after an extended visit with lots of cancer families do I realize cancer trumps race, for me. When we're all sharing stories of struggle, survival, sadness, anxiety, and frustration, we are there as cancer parents or patients. We aren't Black cancer parents/patients, gay cancer parents/patients, single cancer parents/patients. We are just parents. We are just patients. We joke about things like textures of wigs or ethnic acceptance of baldness, but in the end, the root that binds us is our cancer experiences -- our desire to survive.

picture-11Decembers always bring up anxiety about cancer, too. It was the month when my oldest sister had her mastectomy at age 37. One year later, my other sister had her mastectomy at age 35. I'm next. It's obviously not this December, but next? The one after that? Will my daughters have to choose their Decembers, too? When your own body is your enemy, what choice do you have?

So, indulge me this one night as I lay awake anxious for my appointment tomorrow. God knows we've been through enough. I'm sure the pregnancy induced Reeses Peanut Butter Sundae isn't helping matters, either.

Thanksgiving memory

While I don't celebrate Thanksgiving as a day of "love and peace between Pilgrims and Native Americans," images(slaughter of Native people, taking of their land by early Pilgrims, current discrimination of Native people, etc), I do celebrate the opportunity that 4-days off to see friends and family is given to us.  With many of my family members living all over the country, this is a day when we know that people will be around for a good 4 days or so. Thanksgiving is a special day for my family because we certainly have so much to be thankful for our in lives: cancer survival of so many in my family, births, reunions, etc. But, there was one Thanksgiving recently that irked me. As many do during this time, I had the opportunity to connect with a few peole who I hadn't seen in about 15 years. Long time. In this gathering of folks, looks have changed, boyfriends/girlfriends/marriages have changed, children have been added, new countries have been visited. And, as racially diverse as this group was (which is very rare for the town in which I was raised), we were also incredible diverse in our life experiences. Three of us were married. One of the group was recently divorced. Two of us had children. Three of us were homeowners. But, of our gathering, there was one in our group who had very different experiences: single, wealthy, jet-setter, no  commitments, no responsibility other than to herself.

I have always been very thankful for the way my life has turned out. During the time of this gathering, in fact, my daughter had just finished chemotherapy, I had just delivered my second child, and had been recently promoted at work. My favorite things to do then are still the same things I love to do now: spend time with my family, snuggling on the couch with my kids, and being in bed by 10pm so that I can do it all again the next day. Unlike this single acquaintance, I don't make a lot of money, but I love going to work every single day. I love my life. I have chosen this life. I wouldn't have done it any differently.

That was, until this single friend turned to me that night and said, "Wow. Our lives are so different."

"Yes, yes, they are," I replied. I really hadn't thought anything of it until she then followed it up with, martini

"I feel so bad for you," while nodding her head pitifully at me and then sipping her cosmopolitan martini.

WIth a desire not to make a scene, I basically just chalked it up to her inebriation and my annoyance. But, with the arrival of each Thanksgiving, I can't seem to shake her "pity" for me. I convince myself that it's actually she who is missing out being surrounded by unconditional love. I convince myself that having cared for a child with cancer has made my life more meaningful, more rich, and more thankful. I convince myself that I would much rather sit at home and watch "Entourage" than have it be my life. And, I believe all of it. Yet, each Thanksgiving, her face arrives back into my consciousness and her words, "I feel so bad for you" ring through my ears.

So, while there are so many things to be thankful for, it's hard not to wonder, "What If?". What if my child was never diagnosed with cancer? What if I didn't have to pray every night that she would wake up the next morning? What if I didn't have a house with an inflated mortgage, a job that I need to pay the bills, and a group of children who I had to tuck in at night? What if I didn't have to change diapers, worry about car seats, schedule my day around nap times, or work 50 hours a week for the same amount of money that this woman makes in a day? Would she feel less bad for me? Would i feel a yearning for a life of family, house, stability if I lived the single, jet setting, no commitment lifestyle?

I'm sure after a round of turkey and a few helpings of cranberry sauce, this woman's words will leave me - until next year. I feel like, in my case, the grass isn't greener on her side - at least not for me. I feel Blessed, thankful, and enriched for being able to give life, protect life, and create life; and, in return, my children, family, husband has given life to me.

She Hates Her Hair

Daughter #1 is at it again.. the hair. All the smart anti-racist parents called it a few months ago when I posted about the issues my 4- year old daughter is having with her hair. Her big, curly, beautiful hair. Joli has the kind of hair that people want to touch (which, yes, I have issues about, but let’s put that aside for a minute). It’s the kind of hair that people say, “I wish I had your hair!” But, being the 4-going-on-14-year-old that she is, Joli hates her hair.

Why is this complicated?

Mom (Filipina) has black, straight hair. Sister (also biracial Filipina/Puerto Rican) has loose wavy hair. Joli - thick, black, curly hair. Dad (Puerto Rican), well, used to be thick curly hair, but has decided to go with the shaved head look once he turned 30-something.

None of us hvo5ave hair like Joli. Only Joli does the extra 2 minute deep conditioning. Only Joli uses the spray in detangler, or, if it’s Friday night, the leave in V05 hair oil. Only Joli cries when she sees the white, wide tooth comb coming out of the hair supplies box, knowing full well that we’ll hear the sound of crying over the LL Cool J that Daddy is bumpin’ in the living room.

We all love Joli’s hair. If you’ve followed some of my posts, you’ll know that Joli lost her hair when she turned 2 years old. She endured 6-months of chemotherapy to kill the cancer cells in her body, lost her beautiful baby afro, and was often called a “boy” even though she work pink hats with butterflies on them. When Joli’s hair started to grow back, it signaled increasing health and a return to her childhood. Her hair has great meaning to me. I love her hair. bald joli

Once Joli’s hair got long enough to pull into first 2-puffs on either side of her head, and then 1-big puff at the back, she started to hate it. She cried just before getting into the bath, begging me to wet her hair quickly so that it would stop getting big after she took it out of her hair elastic. If someone saw her hair between the time she removed the elastic to the time it was soaking wet under the shower, she would scream “Don’t look at my hair!!”

We’ve asked people with hair like Joli’s to talk to her. I even went and asked one of my students to spend some time with Joli. “They have the same hair,” I thought, “this’ll be great!” Joli had fun. But, she didn’t feel any differently about her hair.

Even when her two blind friends who she met at Camp Sunshine made her feel special by saying, “We know it’s Joli because we can feel her curly hair”, Joli still hated her hair.

Jorge and I love to sing along with India.Aire’s “I Am Not My Hair.” And, Joli loves to sing along, too. She knows every word.

But, what’s my 4-year old’s favorite line? It’s when Akon sings, “But success didn’t come ’till I cut it off.”

Who says kids aren’t listening??

We point out that people have different hair when we are in diverse groups. Joli’s friends are incredibly diverse, too, and many of them go through the same hair care rituals. Joli has watched as her friend Hayley’s braids were removed, carefully untwisted strand by strand and set out on the kitchen table. While visiting her abuelos, she has watched women in the salon in Queens, NY get their hair deep conditioned and blown out. She has watched white women with layers upon layers of aluminum foil squares, waiting patiently under round heaters that encompass their heads.

I think about our journey with Joli’s hair because it keeps reminding me about Anti-Racist parenting. Even as an Anti-Racist parent and as a 9am-5pm diversity facilitator, my child still struggles with issues of race and difference.

I recently heard a well known white, anti-racist, male speak about the moment when his daughter came home claiming that “Jesus was white.” The man was horrified. Here he was, a well known anti-racist and diversity activist, and his own child was repeating the very words he had fought so hard against imparting.

I write this to point out that even those who are well-versed in anti-racist movements also struggle. That, we don’t always get it right. That, we don’t always have the answers all the time. That we can set up the ideal situations, and yet our children are still their own free spirits who must experiment with their world. Though, for me, that’s the beauty of children and the challenge of parenting.

My husband and I never argue with Joli about her hair. We never say, “No, you’re wrong, Joli. Your hair is beautiful” or “You’re being so silly! Everyone loves your hair.” Because, to her, her hair is her truth. We also don’t want her to feel validated simply because others believe something about her. Rather, we ask her questions like, “Can you tell me more about why you don’t like your hair?” or “Is there something you’ve seen or heard that makes you feel that way?” Yes, she’s 4- years old. No, it’s not too early.

We frequently talk about how she and her sister are different and beautiful in many ways. We explore the beauty of their skin color, the interracial make up of our immediate and our extended families, the racial and ability diversity of her friends, the diverse family combinations (gay married, single, divorced, mom/dad, etc) of her pre-school mates, and range of body types (from sizes 2-20) of the people who are close to us. We read stories with racially diverse characters, watch tv shows with good messages about diversity, and listen to all types of genres of music. Joli even comes to some of my college lectures on race and racism.

Yet, my child. She hates her hair.

I’m hoping that this hatred of her hair, too, shall pass. And, maybe it won’t. But, I know that my husband and I are doing our best to be supportive, honest, and encouraging of the process that my daughter is going through as she learns to navigate her emotions and her experiences as a young, biracial child.

Anti-racism is a process. And, I’m not ready to give up just yet.

What are the areas in which you try to set up the ideal environment/situation for your child, yet your child still seems to be pushing back?