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!


The DutchMac Tribe said...


Anonymous said...

6 years ago a doctor in the NICU told my MIL there'd be a cure in 5 years. :( I still hope that withing Max's lifetime there'll be a cure or longterm treatment option. Somedays I just stop what I'm doing and stare in wonder at Max. To forever burn that image, that memory in my mind.

Each new milestone, each new medication is a struggle that we've overcome, for now. I could drive myself insane thinking of the what ifs and worrying about the future. I try, try so hard to keep it together. And it seems manageable right now, but I know that any little change -- a cough, an iffy lab result or culturing something is going to send me spiraling into that realm of frantic worries and what-ifs.

I have no advice. Just know you're not alone in your thoughts and fears... Although my child isn't a connoisseur of kibble -- still giggling about that post. :) Ratatosk

Casey said...

I love you. And my heart breaks when I read this.

I wish I could hug you in person.

holly said...

Huge hugs right now Elise! I know.

Ojaio's scar on her belly has always been my constant reminder. It's so hard. I've been feeling more optimistic lately with the new research, but it still feels like it will be forever and I'm not sure when to get excited? I feel like I have to wait until she swallows the pill herself and the sweat test results come back normal and when I think about it like that it feels like forever!

Ojaio has also begun clearing her throat more and every single time she does this I want to scream.

Huge hugs!

Unknown said...

I'm so sorry Elise. I think I'm going to double my check to the Great Strides fundraiser this year.

Tami Draxler said...

I do. I feel that way. All of it. Thanks for posting this.

The part that hit me the most was what you said about the plastic button on the outside being a sign of something wrong on the inside. I still struggle with that. Emily doesn't know life with out her button anymore. It's just there. Lucky her. I look at it sometimes and want to cry. Sometimes I do.

It's never over. I'll never be like I was before.

You are not alone.