Thursday, January 28, 2010

Something strange happened tonight.

I've been reading the book SIXTYFIVE ROSES - A SISTER'S MEMOIR. It's about a woman named Pamela who was born in the 1950's with Cystic Fibrosis. The story is told by her sister Heather, who recounts their life together in rural Canada at the beginning stages of "treatment" for CF, and the incredible feat of Pam living into her late 20's. It's a beautiful memoir and of course very difficult to read. I sobbed several times, held the book to my chest, wiping my eyes before I could continue.

Even though the story is told from the perspective of the sister, I couldn't help but relate to the mom. This CF mama raised two children with CF and two without, did manual CPT 2-4 hours a day, changed and dried the sheets every day from her daughter's mist tent, baked, cooked, cleaned, polished, mended, went back to school while her daughter was dying to acquire her nursing degree and basically took over her end of life care. Their family started outreach and education in Canada for CF research and started support groups for other CF families. They worked from sun up to sun down to keep their CF kiddos alive, to raise money, awareness and education. Their dedication was beyond parenthood. It was celestial, and I can only hope to be that strong.

As difficult as it was to read, I was able to distance myself a little due to the progress in CF treatments. It was necessary for me to say, "things have changed, it will be different for Froggy."

But I could absolutely relate to Heather's feelings of a fleeting life, her anger, frustration, feelings of putting her life and career on hold, struggling with spirituality, and eventually finding a peace in the acceptance of "surrendering."

Wander with me for a moment...

Today Froggy and I spent the afternoon at the Getty Center. She rolled down the grassy lawn, climbed the boulders, played in the fountains, was reprimanded by the security guards for doing these things, ran through the garden, made a friend, and had a fabulous Froggy time. Afterwards, we stopped at Trader Joe's for groceries and Froggy asked the manager for a pink balloon. He of course obliged. How could he say no?

While I prepared meds, treatment, and dinner, Froggy played with her pink balloon. She bopped Buddy on the head, ran through the house with the dog chasing her, tied her stuffed animals to it, and was sad to part with it when going to bed.

After rocking Froggy to sleep, I sat on the sofa and continued reading this book. As I reached the very last sentence of the book, the pink balloon that was filled with helium, floating on the ceiling, fell all the way to the floor. It wasn't a gradual fall, it was as if the air had suddenly gone out.

The book ends with the death of Pamela. The very last line is "I have learned that no matter what misfortunes or joys one may be faced with - life will surely go on... with love. -Pamela Gaye Summerhayes 1954-1980.

FD and I watched the pink balloon fall to the floor and felt that sensation where you know something has taken place. Today was one of those perfect days, overlooking the city, the bird's eye view of LA, the beach and mountains. We road the tram, giggled in the fountain, ran through the garden, watched deer grazing on the hillside. It was a perfect day.

I know there is more. That life does not end when our bodies do, when the helium is let out of the balloon. We keep going somewhere that overlooks the city, where ocean and mountains are within reach, and kids roll down the hills, play in the fountains and touch the sculptures without ever being reprimanded. I know this in my heart. But every once in a while, it is nice to be reminded.

Wednesday, January 27, 2010

Monday, January 25, 2010

Just go bake cookies

Wrote this a couple days ago and didn't feel like bringing everyone down. Now I'm feeling better, more hopeful, but thought I should post this anyway in case other CF moms/dads feel the same...

I remember when Froggy was diagnosed at four months thinking, "In four years there will be a cure." Four years seemed a monumental amount of time. Because of the research I was reading, the new meds moving through the development pipeline... I'd hoped that by now, we would be there. That hope or denial was keeping me afloat. But lately I've been sinking.

Froggy has been talking about her birthday in September. She can't wait to be five. Her birthday cannot come fast enough for her. But I'm secretly dreading it. I don't want my baby to age without a cure. I don't want another year where her little lungs have to breathe through murky CF mucus. When most parents look forward to their children growing, I'm scared of more candles on the birthday cake. I want to freeze time, to magically suspend ourselves in the universe until gene therapy catches up.

The other day I was telling my friend Meeps about Froggy needing a g-tube. Her eyes instantly filled with tears and she said, "When will it be over?" I said, "It will never be over." And that last bit of denial left my body. It will always be something with this stupid disease.

I feel like the older Froggy becomes, the closer we come to cirrhosis of the liver, diabetes, kidney failure, lung transplant. I'm depressed thinking that the best years of our life are now. I can't hold onto it. I can't enjoy everyday enough. I can't love Froggy enough, hold her enough, kiss her enough, knowing that this is the healthiest she will ever be. I can't sustain it. I never want to let go of my healthy girl. I never want her to have a pic line, or need a transplant, to spend more time in the hospital than out. It's like a Twilight Zone episode where a fortune teller comes up to someone on the street and says, "I predict your life will be all downhill from here."

With the g-tube, her liver enzymes elevated, Froggy clearing her throat more...all these signs confirm the reality of CF.

Sometimes I forget. Sometimes I think our life is normal, even with treatments and meds, I forget that this is real. And then I heard the word "chronic illness" or I have to call our health insurance and tell the woman, "If she doesn't get these medications, she'll die," and I just want to scream at this stranger on the other end of the phone, "I don't care what strings you have to pull, I don't care what my policy says, just be a human being!"

I think one of the reasons I've been dreading the g-tube is that when you look at Froggy, there are no physical signs that anything is wrong. She's perfect. But with a g-tube, CF will be visible. The outside of her body will reveal the truth, her inside doesn't work.

I know it's best for her, I know this will help her in the long run, but I just don't want it to be real. I won't have days where CF disappears anymore. We'll have this physical reminder, sticking out of her side, this reminder we wash around in the tub, a reminder at the pool, another reminder that we are powerless. And I suppose, like all things CF, it will one day become normal. I'll stop noticing the plastic button where skin used to be, and just see my girl. I know this. But right now my heart hurts. Right now I'd like to crawl under the covers and hibernate for a few days. But I'm a mom, so rather than hiding away, I'll go do laundry and see if the Frog wants to bake some oatmeal raisin cookies....

And by the way, the cookies were fabulous!

Sunday, January 24, 2010

I Keep You

i perch my nose on the nape of your neck
breathing in that salt perfume
i think 'remember this'

you sleep

don't forget the smell of her
for a moment
keep it in a locket, tucked in the safest corner

that place
where she can always be found
a warehouse of scents
after the beach
after the park
after preschool
sand, wind, elmer's glue
keep it
keep it
don't lose her

my face tangled in spiderweb curls

living in that beat like a tuba player -
a breath that can play an entire song
without stopping

stay there
in this permanent world

the salty musk

i breathe you in
i keep you

by Froggymama

Saturday, January 23, 2010

A little panicky

We are probably going to lose CCS (California Children's Services) because our income increased with FD's new job.

I'm very worried because of past experiences with Blue Cross.

For years, we were trying to get Froggy's compounded Prevacid covered. CCS said they would pay for it, only if our insurance 'denied' it. Blue Cross refused to deny it. They said, "It's a covered medication, but you have 100% copay." When I asked, "How the hell is it covered if I'm paying for the entire bill," they replied, "It's on our list of approved medications, but with your plan anything compounded or brand name is 100% copay."

I'm terrified that they are going to do this with all of Froggy's meds. Tobi, Pulmozyme, Pancrecarb - all brand name, all thousands of dollars each month. Even if the medication is on their list of covered-meds, if it's a brand name, it's 100% copay.

Is this legal? How can this be legal? They get around it by saying it's covered, so they won't 'deny' it, but won't pay for it either?

I've contacted an agency, our social worker and nurse care manager, as well as the CF forums. I'm hoping someone has the answer.

Friday, January 22, 2010

Insurance Help!

I'd love any advice with this...

Since FD started working full-time, we'll lose our state-funded supplemental insurance. Froggy has medical insurance through Blue Cross, but her policy (that I purchased before knowing she had CF) does not cover brand-name drugs. As you all know, basically ALL CF medications are brand-name. And either there isn't a generic, or the generic is so awful, CF docs won't even write prescriptions for them.

Has anyone been through this? Where do we begin? Our social worker at the hospital gave me a number to call a service that works with women and children. I left a message with them, but would like to get the word out that we need some advice.

I called Blue Cross and we can apply for a different policy, but the rep. basically said there is "no way" they would approve a new policy. Lovely. Okay world, send me the answer!

Monday, January 18, 2010

Dr. Froggy?

This is Froggy's new bedtime story. She wants us to read it to her every evening and begs, "Just one more page!" It is not light-reading, as I struggle to explain the three parts of the small intestine. In case you're wondering, it's the duodenum, the jejunum and the ileum. Yeah, say that while balancing a vibrating toddler, nebulizer and monster book. Whew, this mama is learning more than I ever wanted to know about the digestive system. Oh how I miss GOODNIGHT MOON.

Good Friends

I especially love this last one.

Sunday, January 17, 2010

Wednesday, January 13, 2010


Pat Robertson said that the Haitians brought poverty and natural disaster on themselves because of a "pact with the devil" they made in order to gain independence from France. Essentially, this is their punishment for wanting freedom.

I'm sure those sentiments are comforting for the people of Haiti to know that they actually deserved what they got -- as they search through the rubble for their children. I'm appalled and disgusted. Pat Robertson is the reason people do not want to call themselves Christians. Because if he claims to be one, why would anyone want to be in that 700 club? I hope there are reprocussions for these statements. I hope that this kind of ignorance and hatred masking itself in religion is understood for what it is. I hope that Christian leaders are brave enough to denounce these ridiculous justifications for natural distasters, and call him out. As FD put it this morning, "he should know about the devil, he is one."

A Jewish friend explained that "taking the Lord's name is vain" does not translate in Hebrew as saying "Oh God," but rather doing or justifying your actions in the name of God. Saying or doing something evil while saying, "it is in the name of God," - starting wars, blowing up buildings, blaming poor people for natural disasters. Basically, God is saying, "look it's on you buddy, don't hold me accountable for your nastiness." This is a perfect example. Pat Robertson, shame on you.. It's not God or the devil or a pact at the Crossroads with Eric Clapton and Janis Joplin. It's an earthquake, not an opportunity to scare people into sending you money. Ugh, enough said.

You can watch the video and read the story

Sunday, January 10, 2010

Tough Questions

Yesterday... out of the blue.

Froggy: Mommy, did you have Cyxtix Fabrosas when you were little too?

FM: No honey.

Froggy: Why not?

A very long pause as I brace myself, thinking 'she'll remember this moment forever, don't blow it Mama.'

Froggy: Mommy, why not?

FM: Mommy wasn't born with it.

Froggy: Was Daddy?

FM: Nope.

Froggy: So, why do I have Cyxtix Fabrosas?

FM: You were born with it honey. Just like you were born with blue eyes and brown hair. It's just how you were made.

Froggy: Oh, okay (happily goes back to playing).

And then I went in the kitchen, took some deep breaths, wiped my eyes and ran back into the livingroom to tickle and love our little Froggy.

I don't know how to answer these questions. I show Froggy pictures of my friend's blogs and their kiddos with CF, as well as the adult CF blogs I follow. I tell her they all do treatments and take meds, and go to the doctor. She remembers their names and knows their faces, and when we talk about CF, she says, "just like Ojaio, or Abby, or Cara?" I hope this creates a community for her. Understanding, really understanding what it is like to have CF is the one gift I can't give her. I don't know how to answer these questions, I don't know what it's like. I don't know how much we should tell kids once she starts school. I just don't know. But I'll follow her lead and knowing Froggy, she'll have all the answers.