Wednesday, July 29, 2009

The Perfect Medicine

Froggy's new favorite game is playing doctor. She has a little medicine kit and I fill syringes with water so she can give her babies their 'medicine'. Beyond the normal curiosity, I think she's processing her treatments and meds and coming to understand these issues through play. It's also such a huge part of her life, it seems only natural she would mimic reality in this safe world of pretend. Sometimes she is the one healing her baby dolls and sometimes it's a friend healing her.

Froggy and her best bud Beeman were playing doctor the other day and when I peeked in the room I saw Froggy under a blanket and she said, "I'm sick," in a very dramatic, soap opera voice. I watched Beeman give her medicine and shots, take her temperature and put a bandaid on her arm.

I love that at three years old they are practicing empathy, with plastic stethoscopes and Susan Lucci histrionics. This is a dress rehearsal for their lives - these games that one day will play out. Whether they become doctors, or comfort a sick friend in the hospital. They are learning, mastering kindness as children.

Yesterday Froggy came into the kitchen and said her baby was sick. "Oh no," I said, playing along.

"She needs the perfect medicine," Froggy said.

"The perfect medicine? What's that?" I asked.

"It's perfect medicine and it makes her all better."

I filled up a syringe and handed it to her. Froggy left the room to give her baby the perfect medicine that would make her all better. And I had to stay in the kitchen for a moment and swallow the sob rising in my throat.

Wouldn't it be wonderful if I could fill up a syringe, give it to my baby and heal her. The perfect medicine. Someday Froggy, someday.

If you'd like to read the latest in CF gene therapy click HERE.

Saturday, July 18, 2009

Froggy Visits The Museum of Natural History

Friday, we spent the day at the Museum of Natural History with Grandpa J. The butterfly pavilion, was the main highlight for Froggy. After the museum we hit Olvera Street and met Grandma W. for dinner, listened to a mariachi band and Froggy bought a plastic flute that was incredibly entertaining for the car ride home.

As we walked in the main lobby of the museum, there were two dinosaur skeletons. I said, "Froggy, is that a dinosaur?" She looked at me like a fool and said, "It's a triceratops Mommy."

And tonight while reading The Very Hungry Caterpillar, Froggy took the book away from me and read it practically verbatim. On the first page, where "a little egg lay on a leaf," there's a picture of the moon. Froggy asked if it was Saturn because it looked like it had rings around it. I said, "Where did you learn about Saturn?," and again she gave me a look like, "Pay attention, lady."

I know, I know, I'm bragging. But I'm so proud that Froggy loves to learn, loves to read and explore, and this world is her oyster...or better yet, the world is her genus Pinctada in the family Pteriidae.

Learning vicariously through my little Frog is even better than the first time around.

Thursday, July 16, 2009

Tuesday, July 14, 2009

Elephant Dreams

There have been so many times where I sat down to write and...nothing. I felt like a fraud, because I couldn't tell the truth. I couldn't write anything clever or humorous when the elephant in the room was staring me down saying, "what about me?" And everytime I put finger to key, the elephant would sigh and say, "still here, babe."

When I think about the past four years, it's amazing we survived. We survived. I'm proud of that. But it was not without casualities, not without starving our spirits, and ultimately our marriage.

In the last four years we dealt with the devastating diagnosis of Cystic Fibrosis, and then like a cruel joke, Epilepsy. We spent three weeks in the hospital where a doctor told me our baby needed a blood transfusion and may not live. We made it through realizations and grief, acceptance and joy. We made it, thank God, with a healthy, thriving child.

FD started and completed his Respiratory Therapy Program. We lived on my part-time income and some help from family. Without childcare or preschool, I managed to work from home, begging friends and trading babysitting, to acquire enough time for work, have meetings, manage my boss's life as well as ours. I trudged through the healthcare system, fought our insurance, lost two appeals for Disability, and filled out days and days of paperwork. I spent months on the phone with Blue Cross, incompetent pharmacies, incompetent hospital staff, and lost my cool more than I am willing to admit. But it was a lot.

I've cried and sobbed, screamed and ranted, fought myself, my husband, my God. I've emotionally vomited on everyone I know, I've asked for help, I've begged for help, I've borrowed money, I've bitched, I've moaned, I've lived three lifetimes in four years. I've aged, I've gained, I've become someone I probably wouldn't be friends with. I've worked harder than I ever thought possible. I've worried, I've fed, I've healed, I've calmed, I've nursed, I've given more of myself than I knew I even had. I've fought and fought and fought for this family and at the end of the day, I always felt like a failure. No matter what, I couldn't fix it. I couldn't fix CF, I couldn't fix our lives, I couldn't fix our marriage. Some things are just broken.

In the last four years the communication between FD and I has become "Did you give Froggy Prevacid, can you take out the recycling, can you take her to the park so I can work, did you stop at the pharmacy, we have an appointment at Children's on Thursday, has she had her laxative, Buddy needs a walk, the bathroom is filthy, the cats are out of food, we're overdrawn...again, what time's your class, can you be back by 3pm so I can meet with my boss, the recycling is spilling over the can, and did I mention that the recycling needs to go out!" After a while we became this dialogue of necessity.

We dealt with two rounds of Tobi (her inhaled antibiotic) when she cultured Pseudomonas. For ten months, in the last four years Froggy sat each day for two hours of respiratory therapy, and we sat with her. Everyday has been filled with meds, treatments, doctors calls, prescriptions and fundraising. In four years we raised almost $80,000 for Cystic Fibrosis research. In four years, we've beaten Pseudomonas twice and will keep that nasty bug away forever.

Everytime the car broke down, or the pets needed vet care, or we got a $500 traffic ticket (go California!), everytime something broke or came up, it was a miserable realization that we didn't have enough to fix the problem. For four years we came up short, of money, of patience, of empathy for one another. For four years we were in survival mode. High stress, heightened emotions, and just getting by.

When I was in labor with Froggy, I went from 4 centimeters to 9 centimeters in 45 minutes. It was one contraction after another. There wasn't a moment to catch my breath, to regain my composure, to relax. For four years, we've been living in a state of emergency. It's been like labor in a way. When we finally caught our breath with Cystic Fibrosis, Froggy started having seizures. When we finally caught our breath with Epilepsy, she cultured Pseudomonas. It has been one contraction after another. And I'm not belittling the joys. I know our life has been rich, joyous in so many ways. Froggy is my Mount Rushmore, my Grand Canyon, my Egyptian Pyramid. But tonight, I'm feeling more "disaster" than "wonder".

I thought I would live through this experience with some wisdom or grace. I have neither. And I'm not sure I've learned anything except that I'd never want to do this again. I thought I was better than this, stronger than this. I thought I could get through adversity with hard work and determination, with that never-give-up attitude. I thought suffering was supposed to be a teaching tool. But I don't feel educated, I feel tired. In four years, I learned that a marriage cannot survive, human beings can not survive without air, without a break in the contractions of life, without a moment to rest, really rest. To feel connected to the earth, to eachother, to God.

I am disconnected. There is a huge piece missing, a quiet sadness that has moved into my heart. I will never be the same. I will never feel the weightlessness of life before CF, of life before decisions were made, papers signed and children born. My mom told me that having a child is like literally wearing your heart on your sleave. It's true. Your heart will never be inside your body again. With a baby, you become the most vulnerable you've ever been. Your heart, your life, your child is outside yourself.

I know it's a cliche, but I've lost who I am, or was. I'll wake up tomorrow and do treatments, make calls for work, kiss boo boos, cook lunch, dance and play with my beautiful daughter, but this sadness has moved in. I was taught that if you worked hard, if you fought for it, anything is possible. But that was naive. My heart, my marriage, my child, my life is on my sleave. It is fragile, it is porcelain, and there are no guarantees on these dreams. And ultimately no one is keeping tabs. At the end of the day it isn't how hard you worked, but if you survived. I guess we have in a way. And in a way, we haven't.

I've learned one thing: I do not have control. It's all outside of me.

But I can hope. I can hope.

Hope is the thing with feathers
that perches in the soul
and rings the tune
without the words
and never stops at all.

-Emily Dickinson

Sunday, July 05, 2009

Our Catalina Island Weekend

Froggy in her boat that Grandpa J. made for her.

Grandpa and Grandma's wooden Sail boat

Grandma W. used to work for USC. They have this incredible Marine Biology campus on Catalina Island, that we were fortunate enough to stay on. Thank you Grandma W!

We hitched a ride on their friend Herbie's boat and arrived in Catalina in an incredible 1 hour and 15 minutes. Froggy slept most of the way, as the lull of the motor and waves rocked her to sleep.

The water was chilly (about 4-5 degrees cooler than in LA), but once you got in, it was beautiful and clear. We snorkled and saw girabaldis, bat rays, and I'm pretty sure I saw a leopard shark.

Life has been stressful lately, so this weekend was especially appreciated.
We get wrapped up in treatments and work, school and life -- it was WONDERFUL to swim in the ocean and feel the peaceful world below our daily chaos. I could really get used to this "relaxation" thing.

Thursday, July 02, 2009