An Honor & Privilege

Seven years ago, this very weekend, Miles was a 'featured story' on the All Children's Hospital Telethon. It was two years after treatment had started and, we were still having our ups and downs but we were a determined unit with an entire hospital rooting us on!

His life-threatening auto-immune disease attacked his muscles as though they were a virus. This caused severe weakness in his legs, arms, etc., and if left untreated could eventually attack his lungs, swallowing, and heart.

I cannot thank All Children's enough for what they have done for my kids! Not only did they fix my son, and 'straighten out' my daughter (who battled with Scoliosis for over a year), but they fixed myself and my husband, too. They stood beside us through every treatment and explained every procedure so us normal folk could comprehend it. They consoled and sometimes even cried with us at set backs. And, boy howdy, did they rally with us over every tiny victory! We weren't numbers or 'cattle patients', like in some facilities. They knew exactly what Miles would want for lunch, had his IV start procedure down to a science ~ one to poke, one to rub his feet, one to set his head phones to the right song, and one to coax him through relaxing. As a mom, I could sometimes not even get next to him to be a supportive part of the process. And that was OK, because he had four 'other' moms taking charge!

They taught my kids to speak, to advocate, to step out of their comfort zones, to freely be philanthropic, and to teach others to do the same. All Children's taught me to do the same! We've been to congress, spoke in front of large groups, given testimony, and they've allowed us to pursue passions we might not have ever pursued. Miles started a library for the kids at the hospital. Deanna offered up her artwork on-air and at a guild event to raise funds. I have penned two children's books with proceeds returning to the hospital and Dream Fund and also shared specifically written poetry. And Victor . . . they've kept him even-keeled, denied him his 'John Q' moment on more than one occasion, and helped him in his public speaking as well.

It has definitely been a journey! Although it did not come without its bumps and bruises, tears and troubles, grief and gashes . . . I would not trade it for anything! It has been a true honor and privilege to be a part of reciprocating to such an amazing facility that has truly done wondrous things for myself and my family. It has been humbling and yet enlightening! There has been at least one Marinello present at the telethon every year since Miles' first appearance, and it would be no sweeter an opportunity than to continue that tradition for a long, long time.

Phone in your pledges, or make them on-line. Channel 8 locally or www.allkids.org.
Thank you all, for being the biggest support team ever! Love you all!