Friday, March 28, 2014

Celiac Disease is FAD-free!

"Whether your choice to live gluten free is driven by the desire to lose weight, comply with a celiac diet, the need to avoid wheat because of mild allergies or the suspected link between gluten and autism,"

This part of a gluten free cookbook description irked me...why? Because the fad dieters (who give those with a medical reason to be gf a bad name) are listed first. 

I get it, it's all about the almighty dollar, which would explain why gf products are so expensive; all these people jumping on the gluten free bandwagon are willing to pay to play, while those of us with no other health choice can't afford it. Yes, it is a double edged sword on that products are more readily available, but at what price-both literally and figuratively to the quality of the food and the dismissal of those diagnosed with celiac disease as using the latest diet-du-jour. 

Sunday, March 16, 2014

Don't Consent to Inferiority!

It's okay to walk away. I'm still not good at it even after all I've learned the hard way. I don't want to seem mean or rude; but I must learn that by trying to maintain the nice guy appearance I am hurting myself. 

Respect yourself enough to protect yourself. 

Saturday, March 1, 2014

Thank You Kevin Reilly!

Kevin is one of Zach's buddies. We met Kevin in 2011 at an autism event held each year in conjunction with the Philadelphia Eagles. The event didn't go well for Z and after I privately let one of the workers know what happened, the event was not only salvaged but also cherished as a favorite day for Z and the whole family. We were given two special autograph tickets, so Zach and big sister Alexis (they are the two biggest Eagles fans) got on line together though they got placed in two different lines. The former Eagle giving signatures at the end of Zach's line was Kevin Reilly.( Kevin's Website, from Third and Long to First and Goal ) I admit I hadn't heard of him but his demeanor with Zachary endeared him to me immediately. Kevin quickly had Zach at ease and even got him to smile!

On the ride home, the little football got wet and Kevin's signature was smeared. Zachary didn't have a meltdown or express anger, he just cried. We all worked on telling him it was still readable and he still had the great memory of meeting Kevin and Zach cheered up. The next day I thought I'd try to reach out to Kevin; to thank him for making such a lasting impression on Zach and for turning a really difficult day into a happy memory. I mentioned what had happened to the little football but told him we could still make out the autograph, and that the little football was one of Zachary's new favorite things. I got an email back in less than 24 hours from Kevin, telling me he had a surprise for Zach. That surprise was TWO TICKETS TO THE NFL DRAFT PARTY! This man who had NO obligation to do anything at all reached out to my child. To say he became a permanent hero in our household is an understatement. In those days that the emails went back and forth, I read some of Kevin's story from his website :

Shortly after beginning his NFL career, Kevin was diagnosed with a rare scar tissue tumor. To halt the spread of cancer, his left arm and part of his left shoulder were amputated. After surgery, Kevin worked hard at rehabilitation to overcome the limitations the experts said he would have.
We had VIP passes waiting for us, which left Zach awestruck. Kevin met us at the top of the stairs that led to the VIP area and I watched Zachary run those steps to meet greet him. Anyone observing the hug would have thought they'd known each other for years! 

Kevin introduced Zach to several of his former Eagles friends who autographed the brand new Eagles football Kevin gave him, then told us to go have fun while he did some broadcasting and we'd meet back upstairs later.

Zach and Kevin have stayed in touch off and on since then, with Kevin always responding any time Zachary reaches out to him. Last week Zachary mailed Kevin a letter, and five days later a package arrived for him! Just the day before had been extremely rough for Zach (and therefore also for sister Mallory and me, a different blog entry for that later) so the timing could not have been better. Inside was a wonderful handwritten letter along with a brand new Eagles ball cap and a signed picture of Kevin. Zach had been terribly upset about the meltdowns that overtook him the day before; as he looked at each thing from Kevin, his joyful smile made an appearance and his body relaxed. 

Kevin, I know that you send Zachary letters and surprises simply to make him happy, and I hope his notes and letters bring smiles to you. I want you to know that your acts (that you probably think of as simple acts) have long lasting positive effects on our family. When Zachary thinks about you he relaxes in the memories that have been built with you. He knows all you have gone through and reminds himself of that when things might be harder for him, and keeps pushing forward. Thank you for staying in touch (and please know that just a note or letter is more than enough lol!) and maintaining your "buddy" status, and making a difference for all of us. 

Please watch this video from 6ABC Action news that tells Kevin's story:

Kevin is a broadcaster and motivational speaker, as well as actively raising awareness and research funds for Desmoid Tumor Research. Visit for info