Friday, June 06, 2008

A CF World

I've had a few interesting experiences with CF'ers and families dealing with Cystic Fibrosis:

A couple months ago, I had lunch with a mom (her daughter is 23 and has CF). She is doing well, in grad-school, continues to dance, and even with some long stays in the hospital and decreased lung function (85%) this year, is still feeling great. They're dealing with the lovely challenges of health insurance paycaps, and a child outgrowing her parent's insurance. Yay, something to look forward to!

Also, one of my best friends "Gorgeous Hair" has a young neighbor with CF. She's 21, and we all went out together on Monday (dinner and an Improv show). She's intelligent, witty, adorable, and had a lung transplant when she was 16. Her parents each donated a lobe. I know. I didn't believe it either, but it's possible. She explained that when people donate parts of their lung, the existing lung "fills in" the empty space. Incredible.

And yesterday I attended a webcast at our local CF chapter and met a girl who is my age (a ripe old 30) and she also had a double lung transplant, five years ago and is doing great. She looked so healthy I asked her if she had a child with CF.

I also met a dad who has a 15 year old with CF, who wasn't diagnosed until 5th grade. The dad is dealing with the challenges of a teenager who doesn't want to do treatments and take meds. Ahhhh, can't wait for that.

And it was great catching up with some other CF parents at the webcast who are always facing new challenges (allergies, nutritional issues, etc).

As much as I want to reach out and talk to everyone with CF, and ask a million questions, get involved, it is still incredibly difficult dealing with the reality of this disease. Sometimes you need to get through the day by forgetting, and sometimes even pretending that everything will be okay.

The other night I needed to cry, to be angry, and feel sorry for Froggy who doesn't deserve this, for everyone who doesn't deserve this. And even though the webcast was hopeful with new antibiotics, treatments and meds in the pipeline, it's still hard not to think, "This might be as good as it gets." Our healthy 2 and a half year old is as healthy as she will ever be. And when I watch her play, climbing the junglegym, swimming, so completely able and full of life, I can't help but go to that dark place of "is this only temporary?"

There are so many levels of grief to Cystic Fibrosis. It's not like when someone dies and you go through the stages of denial, anger, acceptance... Everyday, every week, we experience a new emotion. One day I feel elation that Froggy lives in a time of progressive medicine, and in the next second, sorrow that we were so unlucky to be the one in 3500, then anger that our daughter has to suffer what we don't have to, and the guilt of being a carrier of a defective gene, passing on something dreadful to our child.


And then we feel grateful that because of this disease we appreciate every moment, and we truly value Froggy's little life. I can't imagine appreciating my child with such a monumental love without the knowledge that we are so incredibly fragile, that our time together is measured in literal breaths.

And then there's hope. Hope is your best friend and worst enemy. Because you need it to get up in the morning, but it also has the ability to make you crazy, when life doesn't turn out the way you want it to...the way you hoped it would.

Being the parent of a child with a disease like CF, you are given an opportunity, to see life in a dark light. It is a constant balance of pain and peace, hope and devastation, sorrow and joy. And maybe that is the purpose of life, to find the balance, to accept the reality, but live in the hope.

10 comments:

Casey said...

I have no words - just tons of love and support.

Tons.

Beverly said...

Oh, my dear, you express so well dealing with this horrible disease. I look at Ella and see her so full of life and happy and so glad she doesn't know what potentially lies ahead.

I hear all the hopes of the new drugs that are being developed, and I do pray that your Froggy and my Ella will benefit from them.

It is indeed encouraging to see those who are doing well, and then it is heartbreaking when yhou read of a young person's life taken all too soon from this dread disease.

Hugs to you. I would love to meet you sometime face to face, but for now, this is a wonderful medium.

BreathinSteven said...

Hi CF-Mom!

I think all CF Mom's totally ROCK... Mine is still around and mine still rocks...

I can feel what you mean about hope... About hope being your best friend and your worst enemy... Hope always seems to roll into another form of hope - when what you were hoping wouldn't happen does happen, you accept what happened and hope for the next level... Why does such a beautiful word like hope seem to automatically come along with fear and frustration. But keep that word sacred - it's what we live on.

I have cystic fibrosis... I'm 48 1/4 years old, though I still act like an 8-year-old quite often... I've been through quite a bit, and I've been incredibly lucky throughout my whole life -- and I've been incredibly thankful and I've always loved life... I've had a magnificent life so far -- and I wish an even better life for your beautiful little Froggy...

I loved the Iowa poem -- the lungs I'm breathing with now are from Iowa... and I too love the line "I push all the love I can through my fingers"... I have to imagine that has a beautiful place in your life with your beautiful little Froggy...

I received two beautiful lungs eight years ago from a precious 17-year-old girl who, in the month before she passed, told her family twice how strongly she felt about organ donation -- I'm alive because of her and I think of her throughout every single day -- I can see her smile when I close my eyes...

I have a website about her and me at www.ClimbingForKari.org and I blog about organ donation at www.ReviveHope.com

And -- if you ever want to bounce your million questions off me, about the reality of this disease, about living an adult life with this disease -- I'm very open to listening... My email address is at the bottom of the ClimbingForKari website above...

Give your little Froggy a hug for me... CF Moms truly do rock...

Love,

Steve

Steve Ferkau
Chicago, IL

Anonymous said...

wow froggy mama. once again....very powerful thoughts translated so well. hugs and prayers always - jcn

Anonymous said...

We all have to hang onto that hope. As the apostle Paul said, "And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us...."

Anonymous said...

FM,
Once again you have expressed what I am unable to put in words. Thank you.

KHJ

Cara said...

Big hugs for you and Froggy! Let her know that when she's an old lady, she can help my best friend (who has CF also) and I with our book that we are writing when we're 100. :)

Anonymous said...

I have a daughter with Cf. She is 7 months old, and was diagnosed when she was just two weeks old. I wanted to encourage you with a scripture, Isaiah 43:1 "And now thus says the Lord, your creator, and he who formed you, "Do not fear, for I have redeemed you; I have called you by name; you are mine."
Jesus nows your little froggy by name. Cling to Him, and you will find peace.
Psalm 25:5
"Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long."
Hug that baby of yours, she is beautiful!

Tami said...

Isn't it funny how CF stories sometimes come "out of the woodwork" and then sometimes we sit, all alone, for months with no one to understand how we feel and what we are going through?

You post was well put, and beautiful. I waver between that need to cry and be angry and the need to blindly cling to...hope? denial?

The long and short of it is, I find myself trying to keep so busy with LIFE that I just keep moving. Dory and Nemo were on to something.

I chuckled out loud when you said the 30 year old CF'er looked so healthy that you asked if she was a CF mom. It struck me as funny only bacause I look in the mirror and think that strangers must wnder what disease I have that makes me so tired and old looking at the age of 37. If anuone asked I'd tell them it's CFmommyhood.

Thanks for another good read.

Tami
Mom to Emily 2 1/2 w/CF

Wendy said...

Oh my goodness me - your last line says it all. I think I have also arrived at that conclusion recently "...purpose of life: to find the balance, accept the reality and live in the hope", after years of soul-searching and the eternal question "why?"
My Hubby has severe COPD (chronic obstructive pulmonary disease), has been on oxygen for the last 6 years and some days I don't know how I get through.
But we do.
Thanks for a beautifully expressed post. I found you through Bev's blog "Lacoochie kid".
Hugs.