Aurora, 3 years old

Please click on the PHOTO to view our THREE MINUTE SLIDESHOW, THANK YOU!

Warrior Girl – Great Strides 2012

OUR SPIRITED LITTLE WARRIOR!

This has been the YEAR OF THE COUGH – Aurora had a chronic, lingering cough for most of the past year… going away here and there for a few days after antibiotics but pretty much just hanging around. Then we had two months free of it – no cough at all… Jeff and I hadn’t realized how we had been holding our breath each time she coughed… until the cough stopped and it felt like a dark cloud lifted… the whole house was lighter… we could all breath… for awhile at least…
We are back to a string of colds with coughs but at least we know there is still time and space in our life where we will not have a lingering, forever cough… not yet and hopefully not ever…

Aurora’s Warriors will be walking for our third year in the Poughkeepsie Great Strides WALK on June 3, 2012. We are asking you to do whatever you feel motivated to do to help, whether it be to join us on our “Aurora’s Warriors” walking team; make a tax-deductible donation or help us spread CF awareness. Don’t forget to get your company involved and check with your HR department because many employers have fund matching programs.

NO DONATION IS TOO SMALL. TOGETHER WE CAN MAKE A DIFFERENCE!

Your generous gift will be used efficiently and effectively, with at least 90 cents of every dollar of Foundation revenue going to support vital CF research, medical and education programs.

JOIN US… YOU’LL FIND FRIENDS, FUN, EXERCISE, LAUGHTER, MAYBE A FEW TEARS AND A GREAT AMOUNT OF LOVE!!!

Great Strides POUGHKEEPSIE- BOWDOIN PARK
SUNDAY, JUNE 3rd
REGISTRATION BEGINS: 10:00am

You may donate directly online by clicking here
Or send a check to: The Tisman’s, PO Box 1052. New Paltz, NY 12561
Please make checks payable to the Cystic Fibrosis Foundation

Much Love and Thanks,
Vanessa, Jeff and Aurora

There is no public or government money in CF drugs, its all about the private funds… check out this story on an Amazing CF Warrior Father – so inspirational, he has greatly helped to get us where we are!!!!!
click here

This year there was a significant medication, Kalydeco, approved by the FDA. It has given those in the CF community hope, hope for full, healthy lives for our children… for 5% of CF’ers (with a specific mutation) we now have a medication that looks like it treats the underlying cause of the disease … this is a huge start… we dream, we pray, we believe this med will be followed by others, others that will help more in the CF community including our little Aurora. BUT we are not there yet, this is where close DOES NOT count like in horseshoes… it looks like the answers we need might now may be within our sight but they are certainly not in our hands yet…. WE CAN NOT SLOW OUR MARCH toward this goal, we need your help now more than ever, it is your money and fundraising and support that has gotten us here… together we can reach the finish line!

What is Cystic Fibrosis? CF is an inherited, life-threatening disease with no cure – YET . People with CF have two copies of a defective gene that causes the body to produce abnormally thick, sticky mucus, which clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, causing difficulty with absorbing nutrients. In 1955 people born with CF were not expected to live long enough to attend elementary school. Today the average life expectancy for people with CF is 37. This is extraordinary progress BUT IT IS NOT ENOUGH! And it is NOT the reality we expect for our little girl, help us change these statistics! For more information on CF click here.

Great Strides 2011

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PLEASE CLICK HERE TO VIEW THE SLIDESHOW
In such gratitude!!!!
xox

Puppy Dogs and Butterflies

Disney, FL, November 2009

Aurora told me the other day she is like Mickey Mouse…. Now in some families the thought of your child comparing herself to a giant, talking mouse might be worrisome, not in ours…. Dada is a huge Disney fan and we all consider Mickey a good friend. I was curious however what similarities my two-year old saw. She proceeded to point to her Mickey sticker and say, “look he coughs like me”. I don’t know why it looked like Mickey was coughing, but to her it did.

It’s sad for me think that even at her young age, she notices her coughing as something different. As far as CF goes I would say Aurora’s cough is still a mild case. It comes and goes with colds, allergies, asthma… we aren’t always sure why, but it comes, lingers then finally leaves. I don’t know if it was a mention of her cough between Jeff and I or her acute observations of the world around her that seem beyond her years…. Regardless of why, she knows she coughs more than others.

Jeff says I sometimes live in what he calls my puppy dog butterfly world. If someone asks Aurora in five, ten, fifteen years from now to list ten descriptive words about herself – I don’t want CF to make that top 10 list. I know that may not be realistic but it is a hope and dream of mine for her. I want her to live her life fully and happily with the CF as a short side note. I know someday she will ask us about her prescription enzymes and why she has to take them when her friends don’t. I want to simply tell her we all take vitamins and pills for different reasons, hers happen to help her digest her food. I wish for that to be enough of an answer for her…. I then envision her giving a little smile and a nod and skipping off into the sunset to play without a care in the world….. Is that realistic, probably not…. and chances are that by the time she is ten or fifteen she will be on many more medications than she is now.

But this mama is willing to hope, willing to dream and damn well willing to believe in puppy dogs and butterflies… especially when it comes to this little person… the light of my life!!!

Super, Duper Greatness!

Super Duper Greatness!!!

Kids fair: friends, family, pizza, beer, bounce house, music, animal balloons, face painting, swimming…. so much fun and fabulous fundraising!!!! An afternoon of fun, food and friends that raised almost $3500 for Cystic Fibrosis research.

Thank you so much to my incredible sister for her amazing efforts – planning, planning, planning…. organizing and making this wonderful event happen!! Thank you to all those other fabulous ones for your super help, Opa and Oma, Uncle Mark, Auntie Rene, Evann, Janet and Danny, Pat, Shirley (maker of the famous mint brownies!!) The Castro/Keitz family: Citsi, Jerry, Meghan, Michael, Marley and Elizabeth for providing, setting up and supervising the glorious bounce house and for the beautiful face painting!! And thank you to the countless others who helped us run the food stations, for your donations, for the silent auction items, etc, etc, etc! Thank you so much to friends old and new, for your generosity, your love and your friendship! It was so great to see each of you and we are sooo grateful for your continued support!!!

You all rock our world!!!

Go Aurora’s Lights, Go Aurora’s Warriors!!!!!

WE LOVE YOU!!

Our 2011 Great Strides Page

It is with such gratitude that we write our Great Strides page this year.

We happily celebrated the big TWO with Aurora in December. She is so full of light, joy, excitement for life and all the amazing things it holds in store for her. She loves music, dancing, reading stories, playing with friends and hikes in the woods with her dogs Lakota and Luna. Her growing vocabulary astounds us and she continues to surprise and uplift us daily with what she does and all she is. Cystic Fibrosis may be a reality for us but we refuse to give it a ruling power over us.

We are very grateful to our family, friends and friends of friends! We were overwhelmed by the response last year with such love and support and we thank each of you so deeply! Thank you to those that walk with us, those that donate so generously and those that help us inform and educate about this deadly disease. This year we hope to reach even farther, touching even more with our story and spreading awareness and knowledge.

The winter has been tough on us with a nasty string of coughs, colds and runny noses, each bringing more stress and anxiety than the last. Many a late, delirious night we lay awake fantasizing about just packing a bag and driving south to sunshine and warmth, freedom from our pellet stoves and dry forced heat.

We are overjoyed to be welcoming Spring and with it the strength and hope that the Great Strides walk brings, the coming together of family and friends in support and love!

What is Cystic Fibrosis? CF is an inherited, life-threatening disease with no cure – YET . People with CF have two copies of a defective gene that causes the body to produce abnormally thick, sticky mucus, which clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, causing difficulty with absorbing nutrients. In 1955 people born with CF were not expected to live long enough to attend elementary school. Today the average life expectancy for people with CF is 37. This is extraordinary progress BUT IT IS NOT ENOUGH! And it is NOT the reality we expect for our little girl, help us change these statistics! For more information on CF click here.

Aurora’s Warriors will be walking for our second year in the Poughkeepsie GREAT STRIDES WALK on June 5, 2011. This walk is the CF Foundation’s largest and most successful national fundraising event. We are asking you to do whatever you feel motivated to do to help, whether it be to join us on our “Aurora’s Warriors” walking team; make a tax-deductible donation or help us spread CF awareness. Don’t forget to get your company involved and check with your HR department because many employers have fund matching programs.

NO DONATION IS TOO SMALL. TOGETHER WE CAN MAKE A DIFFERENCE!

Your generous gift will be used efficiently and effectively, with at least 90 cents of every dollar of Foundation revenue going to support vital CF research, medical and education programs.

GREAT STRIDES POUGHKEEPSIE- BOWDOIN PARK
SUNDAY, JUNE 5th
REGISTRATION BEGINS: 9:00am

You may donate directly online or send a check to:

The Tisman’s, PO Box 1052. New Paltz, NY 12561
Please make checks payable to the Cystic Fibrosis Foundation

Any questions don’t hesitate to email: vjhauss@yahoo.com

JOIN US IN THIS FIGHT – JOIN AURORA’S WARRIORS!

Much Love and Thanks,
Vanessa, Jeff and Aurora

Aurora’s Laugh!

I recently shared some words with a dear family friend who has been through a lot herself in the last couple years, great sadness and loss but also wonderful joy…

She said my last blog post brought tears, my response was pretty much as follows….

Yes, sure we have lots of tears at times too…. but we try to really enjoy all we have and most of all to laugh, we laugh a lot! Aurora’s laugh is super contagious and luckily Jeff easily accesses his inner child making all those around him feel the sheer silliness of youth… so we have lots and lots of fun in this family!
I wouldn’t trade a minute of the tough times if I couldn’t keep all the good ones. Yes, this damn disease is part of our little peanut’s life  – but it is just one aspect of all the amazingness she is – this is her journey, our journey…  as you know we all have our struggles, none of us know what tomorrow will hold and such is life…. Aurora and her path bring us a clearer perspective on the important things and help us to really, really try to enjoy these important things – the important events, triumphs and moments – to enjoy them with grace and gratitude.

Thank you Aurora for your beautiful laugh and all the wonderful gifts you have brought to our life!!! WE LOVE YOU SO, SO MUCH!!!

Welcome Spring!!

I know its been a long time since I last wrote.

This is part in due, very luckily, to the fact it has been a fairly uneventful CF year (a super, amazing, incredible year with Aurora,- more on that to come, but an uneventful CF year- yeah!!! here’s to many more of those in the future!) We’ve had some eating and weight gain struggles but mostly we’ve been doing pretty well. I believe we owe this in large part to the amazing community of holistic practitioners we have surrounded ourselves with that have become wonderful mainstays in our daily lives.
These last few months have been a little harder – we’ve had a nasty, lingering SOB cough that won’t seem to just go away no matter how nicely I ask. Things escalated the last couple weeks with an intense cold on top of the cough and then a fever the last three nights, with Aurora up, off and on all night – (at some point during the night I end up next to her on the floor or in the bed, who knew child and mama could both fit in a toddler bed?) We took her to pediatrician yesterday who heard “pneumonia” in her right lung, (both lungs were totally clear two weeks ago). The Pediatrician called our CF specialist who requested a lung x-ray to confirm – that was awful, Jeff and I go back with her and the tech says “only dad” – very confused I said “no I’m not leaving her, I’m coming too”, in the back the tech explains its better for only one parent to be exposed to the radiation and the father is the better choice because he has fewer “at risk” organs (ovaries/breast/Fallopian tubes) ummmm what!!! all this as they put a little x-ray skirt around her waist leaving her entire upper body exposed, and cloak Jeff with a chest/waist x-ray frock and I have to go wait in the hall… all I wanted to do was scream, grab Aurora and run!
Poor Jeff has to hold her arms while she’s wining and crying and doesn’t understand…. so traumatic for everyone!
The chest x-ray showed something small in the upper right lung, perhaps pneumonia, perhaps something old explains the radiologist – after some mixed communications, and slightly differing opinions all agreed that with the long-standing cough, current fever, and not feeling well – antibiotics are a good idea. The hesitation has to do with wanting to limit the use of antibiotics to absolutely necessary, none of us knowing when or how many times she will need them in her life.

I so painstakingly look at everything I put in her little body, it’s very hard for me to do both of these things – antibiotics and x-rays. This feels like a failure on my part to keep her well and treat her naturally, it feels like a defeat and hopefully, oh hopefully not the beginning of a cycle of illness and antibiotics!  It is a wake up call that more diligence needs to be taken, to avoid sickness, to wash hands, to somehow nip a little cough in the bud before it becomes something else… not that we didn’t try but we’ll have to try harder. (Yes I know you probably think I am being too hard on myself, I hear that but also believe somehow, somewhere there are always more answers, more options.) But certainly if this is what she needs at this moment than by all means….. and I have to constantly remind myself this is our life…. there could be much more of this in the future….. I can only do the best I can with what I can control and try to find peace with the rest (how the hell do I plan to do that I am not sure but I plan to try)!
I am so dreaming of a winter house in the tropics with the healing ocean air, and no snow, no cold, no pellet stoves, no dry forced heat and most of all no colds, coughs or runny noses!

Let there be light!

 

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Bubble Magic

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