Wednesday, May 12, 2010

Cystic Fibrosis

is a tough disease.  Most days are good - but there are some that it's all i think about - what his future will be like - what will we do when something goes wrong.  We have been so fortunate thus far to have hardly ANY problems with his CF.  We just had a clinic visit a few weeks ago and got the call a few days ago that everything came back normal, blood work and x-rays were all clear, another 3 months under our belt.
I think i get in these moods when we don't get along - its when i feel the worst.  He really is such a great kid - and has a fun personality but we seriously don't get along - he really really likes to push me to my limits.  I think its because it shows - he knows he can get to me - and i let him.  I need to try harder to be better with him - have more patience. I feel like he needs the most love and compassion - and the truth  is - he gets the least.  I'm hoping its a phase we are going through and we will get through it - because i hate feeling this way.  Because then i get on the internet and read sad stories that make me feel even worse. 

This is one of them - it's the story of a 23 year old actress who did a documentary about Cystic Fibrosis (65 red roses) - she past away in March.  She had a lung transplant and her life deteriorated quickly because her body was rejecting them.  She has some very inspiring stories on her blog and there are some clips from the movie.
Here is the link to her blog if your interested in reading more about her life and legacy.  65 Red Roses.

So then i have to move on to more inspiring stories - this man who is living with Cystic Fibrosis and is now 65 - WoW!  How cool is that!
Paul Quinton Ph.D. is a professor of pediatrics at University of California San Diego, and a professor of biomedical sciences at University of California Riverside, where he works to advance the understanding of the chronic illness, cystic fibrosis (CF). Dr. Quinton's interest in this genetic disease stems from his own diagnosis with CF when he was 19 years old. While he is 65 years old, the median lifespan for CF is 37 years. Dr. Quinton is recognized for his work in discovering the defect in the CF gene that prevents chloride molecules from entering and exiting affected cells. His research explained why the sweat of patients with CF is abnormally salty and has helped us understand that this illness is a disease of abnormal salt movement that is associated with abnormal mucus.

And Dean's cute cousin Kara who has Cystic Fibrosis and her husband Jordan - are finally able to adopt a baby - i'm SO happy for them. 
It always makes me think of Ethan's future and makes me wonder if he will find that someone who is so amazing that doesn't let this disease scare them away - who looks past the medicines and the treatments and the fact that he can't have children.  These 2 are what help me get through these times.  Here her blog if your interested in her stories.........Kara's Blog.

One of my very best friends who i've met through this process and has a son with CF always seems to make me feel better too - Love ya Carey!

Okay - i'm ready to get off my soapbox - if you've made it this far - thanks for listening.  And if your interested in donating to a great cause and in making CF stand for cure found - our annual great strides walk is coming up a week from this Saturday on the 22nd.  If you donate through that button it will go directly to Team Ethan!! 



TheDooleys4 said...

Brenda~My heart goes out to you and your sweet little boy. My Shannon just thinks so much of little Ethan.
Keith has a friend who was an old mission comp of his who has a very inspiring story as well......If you'd like to hear about it, I'm sure Keith could share it with you guys. We even told this friend about Ethan and he said he'd be willing to come talk to you guys if you are interested....

Keshka said...

This is such a moving post. And I'm sure he will find someone special one day, who will know that being with him makes it worth it to find another route to children.

Stephanie said...

Oh Brenda... you are such an awesome Mom, and Ethan is such an awesome kid! You have always handled his CF so well, he is very, very, blessed to have you as his mother.

Karie Coats said...

Ok, you made me a little teary eyed on this one. I love our little Ethan! You are an amazing mom! I'm excited to read the blogs you posted!

laura vegas said...

you are an amazing mom, to an amazing kid! and so glad to hear that he's doing good.

Ronda Palazzari said...

Brenda. Gosh what to say. This is a moving post. I think you are one strong woman with lots of compassion. I am so happy to hear that he is doing so well. I am here friend any time you need to chat!!!

carey said...

This made me tear up, Brenda. I love you! I love your sweet Ethan and amazing family, too. How similar our stories and feelings are. It's tough, isn't it? Remember we aren't alone in this journey. When I'm having a rough day, it helps to know there's another mom (albeit far away) that knows exactly what I am going through. Let's remember to lean on each other during those days. I'm going to stop before this gets too terribly cheesy. Miss you. XOXO

Lea said...

Oh Brenda I have a little one with CF too. I KNOW!!! I could have written that post myself. Happiness and health to your family from mine.
Lea, Australia, mum to Bella age 9 wcf