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


fleetfeet said...

"...we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us..." Romans 5:3-5

Thank you for your honesty. I understand you are hurting deeply. Praying for you and your family...

Tooter's Mommy (Courtney) said...

I completely understand your feeling of helplessness in the situation. My husband and I have been dealing with CF for a year and a half and our daughter doesn't have epilepsy, but I totally know where you're coming from!! Just know that even though everything it out of control, you are not alone.

ferfischer said...

I can really identify with this - and we're only 9 months into our "constant state of emergency and survival" - I have nothing good to say, except hang in there, and there is always hope, like you said.

Casey said...

Oh honey. :( This just breaks my heart and yet - I understand and I can feel the pain through your writing. Though I have not had the trails you have faced I can also see myself in your writing.

Thinking the sweetest of sweet thoughts for you.

Anonymous said...

Oh Froggymama, I hear your frustration. You have so much on your plate. I wish I could take some of it away for you. I just hope you know that you have good friends to share things with. Let me know if we can help! And sending you big big BIG hugs from all of us. - Monster

Anonymous said...

I've been worried, checking your site and hoping nothing was wrong, that you were just enjoying life with your family.

I'm so sorry. I've had similar feelings of helplessness, inadequacy -- been overwhelmed.

If there is anything I can do to help, please let me know.

Mom to max age 6 wcf

Anonymous said...

froggy mama...oh my...hugs...hugs...HUGS... thinking of you. hang in there. you are so strong. jcn

Mieke said...


You are strong. You are brave. You are tireless. I know you need a break and it is coming. I promise it is. I look at the pictures of the Frogala at my house, in my arms and I see joy. Delirious joy. She is that way because of you. Because of your love, your commitment, your funny ways, your sense of humor. She loves me because you taught her to love with such abandon.

Breathe Love. Breathe. The time is coming where this will all be so much easier.


Lucy's mom said...

I feel this same way everyday and try to move forward but the weight can be so heavy sometimes. It is overwhelming, drowning in a sea of CF, my life will never be the same. I am glad I am not alone in this feeling but hope we can rise above and soon! Thank you for all your honesty!

Miss Nonni said...

I've been writing and erasing and writing and erasing my comment for these 3 days. If I knew you better I would have *snap* jumped in the car to your house! I have heard this refrain from many of my mama friends. I have sung this refrain, too. We give and give to the bottomless pit of our children and wonder why we feel lost and empty.
Girlfriend, it is Time To Take!
Take some time for yourself. Do some things for yourself. It sounds impossible! A babysitter is so expensive!
I denied myself and my children the relief of a babysitter for years and ended up hitting the wall (just like you) and forking over the cash to a therapist who said, who screamed, "Hire a BABYSITTER!" It cost us more in the long run...
Pre-school is so expensive! Especially for a child with CF!
How much do you think a divorce lawyer is?

Something has to give here.
Or you can keep it up. Checkback in in 4 more years and see how your body and soul are doing after 4 more years of banging into the wall instead of finding the path around it.

holly said...

I admire your honesty, I understand your reality, and I feel your pain. It is there forever. Here's to hope. That things will ease up for you guys a lot...really soon!

Azer's Mom said...

Gosh, I totally know where you're coming from. Azer is almost 6 now. It's always a major struggle if there has been a hospital admission. I feel guilty for having my daughter be handed over, my husband complains about how hard it is to drive back and forth to the hospital, to work, to the hospital again. I mostly suffer from guilt I suppose.

It's just a matter of letting go of the control. Which, is impossible for me. Because I feel like I am in control of everything. If I just do another treatment, if I just do this, everything will be ok. It's taken a toll on me. I clean the house obsessively. It's how I cope. I feel "in control" of something.

We are all damaged and broken, and hobble our way through. But cling to those happy moments.

Angela said...

I'm just getting caught up on your blog - you are so amazing in how you are handling the hand you've been dealt... I know you feel like a failure, but I think you are doing 100 times better than I would be doing in your situation. I only wish there was something I could do to help out. :(

Anonymous said...

I've been following your blog for a long time. I cried reading this, but it is a relief to hear you complain :).

It hurts, but it is much better to be honest about your feelings and acknowledge them, honor them, listen to them. They are messages from your soul.

If you broke your leg it would be really bad to ignore the pain and walk on it. Sometimes we feel a little broken and need to rest and give ourselves time to heal.

You are doing a great job,

Anonymous said...

I am so so so sorry!

I wish I could help you -- you have been through the wringer.

You need to decompress, you need to be able to exhale... You are too exhausted to feel; you have lived on the edge too long.

But Mieke's right -- relief is almost there. Just hang on, just hang on...

Big hugs...


JaneP-D said...

Hadn't checked in for awhile and Nonni told me what's been going on. Reading this post made me ache for you. It's true we don't know one another well but you speak your heart so eloquently I feel as though I do. How many times in my 3+ years of motherhood have I reflected about how I have lost myself -- my dreams, identity, energy, self-respect, boobs! for the pursuit of motherhood. I cannot fathom how tough it is for you. Take care of yourself. Take time for yourself. More solo Chinese food lunches. Even the mightiest can snap. Take some time, please. You are most deserving of it. xo -jane

Anonymous said...

I am just now catching up on your blog. I know you posted this over a week ago and I hope you are feelnig better. You are so honest and such a beautiful writer. I feel like you put into words how I am feeling. I am going to have my hubby read this post so he has an idea of what I have been feeling daily for the last two years.

As others have said you are not alone on the mother of a cf-er journey. Please take good care of yourself.


tdraxler said...

I, too am just catching up on your blog. It's been said by several above me, but, I "get it", too.

You have, once again, spoken so eloquently for many of us.

I wish for you that this wave will have already passed over, and you are once again doing what you do everyday with renewed spirit and joy. It's ok to have the bad days, but for Froggy, you'll pick up and move on.

Thanks for being our voice.