Monday, April 9, 2012

Haters gonna hate

Happy Easter everyone! The weekend has come and gone and so has the two weeks that Martin was able to take off to spend with us and the new baby. It was a wonderful two weeks that felt like two months and today was an abrupt end to the luxury of having him home with us. I'm on my own kids, wish me luck!

First things first, a quick matter of business to take care of. I need your help asking Senate to support this important new act. The Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act will encourage more collaboration, helping reviewers better understand the rapidly changing scientific landscape and ensure access to the best, most complete information when making decisions about treatments under review. This will make the FDA review and approval process more efficient and help move much-needed new treatments into the hands of patients more quickly. Click on this link to send a quick, preformed letter to your senators!

There is another CF meeting coming up on April 19th at Cincinnati Children's, discussing the latest advances in CF Science. Dr. Clancy is presenting so you can believe I'll be there! Frankly, I'd be there no matter who was presenting, but I do enjoy hearing Dr. Clancy talk.

I need to go back to the news we got last week about Jake being CF-free. I'm so so glad that he does not have CF. I am also so so glad that we didn't let the fear of CF win of over and prevent us from having another kid. So much has been said negatively about people choosing to have kids when they know there's a chance of them having CF or any disease for that matter, and I say let the haters hate, they aren't getting me down. There was recently this article published and news coverage about the parents of a little girl with Down Syndrome suing their hospital because their prenatal testing told them their child would not have Down Syndrome and had they known she was going to have a disability they would have chosen to abort her. AND THEY WON THE LAWSUIT! Is anyone as outraged by this as I am?? What the F is wrong with people? These people, in my humble opinion, aren't worthy of the title "parents". How can they raise a child with special needs when they are missing compassion and love for their child? I simple can't comprehend this.

There was a great line in Grey's Anatomy this week too when the mother of a very sick young baby says,"So what if he's not perfect? Why does everyone think if he's blind or impaired or not a doctor he's not worth something!". Exactly. That's exactly my point. Its sad to me that there is another school of thought on this. I know I'm a better person today because Drew is in my life. He is going to grow up to be a contributing member of society. We value his life as much as any other and hope that everyone else does as well. Do we like that Drew has CF? Of course not. We wish more than anything that we could take away the treatments and the medicines and the doctors visits, but we can't. Its the hand we were dealt and I think we're playing it pretty well. If we had had another baby with CF we would have dealt with it. It doesn't make me love them any less. There's a reason we were give this child and we're gonna make sure he's wonderful.

When we were at the CF Education and Ronnie from Run Sickboy Run gave his speech, he talked about how much he hated when people called CF a "progressive" disease. And I think that it may have changed my attitude just a little bit. This disease isn't a game of luck. It's about taking your medicines and seeing the doctor regularly and preserving your health. The "median" age of survival with CF includes people who don't take their meds or see the doctor and people who don't work out or do their breathing treatments twice a day everyday. People who play by the rules have better outcomes, yet everyone is included in that "median" life expectancy and that's not fair. There has been 1 treatment that Drew has missed in his whole life, and it was the afternoon that he had his sinus surgery. That's the only treatment that we have missed ever. Its a top priority in our house and always will be. Skipping here and there is not an option for us. If we have to do them a little earlier or later than normal, that's fine. But once we make an exception to skip for dinner plans or for a sleepover when he's a little older, it will become a habit and a bad one at that. We lug all of our equipment with us on trips and vacations and we plan our play dates and dinners out around his routine. And we will continue to. And people can judge our decisions all they want, but my number one priority is the health of my kids, so this is paramount. And you know what? Even living without CF, you're health deterioration is "progressive". You won't have the same lung function at age 10 as you will at age 80. But you work to take care of yourself and preserve your health. I want to stop thinking about him getting sicker. Will it happen? Yes. There will be tough times ahead, no doubt. But I want to think about all of the wonderful things in life that he will accomplish and all of the wonderful things that our family will be and do and not worry so much about the "what-if's". Plastered on the back of our t-shirts this year is where my new motto will proudly be displayed - "Stop being afraid of what could go wrong and think of all that could go right!"

There's still time to sign up to walk with us or to make a donation to Drew - you can CLICK HERE to do either. The t-shirts for our walks are in now too and are available for $5. We would love more than anything to have the support of as many friends and family members as possible walking with us at one of our walks this year. Philadelphia is walking at two locations this year - Citizen Bank Ballpark on April 21 and in Phoenixville on May 6. The Cincinnati walk is May 19th. You don't have to register or even raise any money (though we wouldn't turn you down if you wanted to). Just $5 for a t-shirt and you walking with us to show us your support is really what would mean the most to us. Please consider it!

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