So many things to write about, so I will try to keep each brief. First, we really Enjoyed our trip to Virginia. It was nice to get away from the rest of the chaos and only have our Family chaos! We left Saturday morning and it was a LONG drive out. It rained from Cleveland area to about a ½ hour from our destination, Massanutten Resort in Virginia. We checked in about 7:30/8 pm to our 2-bedroom Condo and settled in. Sunday, was a day to refresh from the drive and grocery shop for the week. Monday, we did the Time Share tour and got 4 free tickets to the Water Park! It was a Beautiful Resort! Tuesday, we drove the Skyline Drive through the Mountains; some Amazing views! Wednesday was the day we headed to DC the check out the Monuments and Smithsonian Museums; apparently, just in time. Thursday, was our day at the Water Park!! Jim and I also went down the water slides and Miles enjoyed the Lazy River and Hot Springs! Friday, we relaxed, packed and got ready for our drive back. This was the day I also had to Break Seth’s little heart by telling him the limited time we have with Miles. Seeing his face will be ingrained in my head forever. I Hate that my 7-year-old converses about these things as if he’s in his 20’s;comprehension well beyond his years. He’s processing and trying to gauge Time. Saturday, we headed out of Virginia and into Pittsburgh, PA! Seth (our little Steelers’ Fan) got to see the Stadium and get a pic in front of it. His words heading into PA on the way out, “I’ve been waiting my WHOLE Life for this”! Oh, the things he says! We headed home Sunday morning and arrived about 3:30 pm to unpack and get ready for our week ahead. It went by SO fast, but was nice to just be us with no distractions of our ‘normal’ day-to-day and all it entails. We Thank the Coles Foundation for this Amazing opportunity; it truly was a Blessing at this time. We returned with many things in store! Miles added Isotretinion to the med list when we returned. So far, he’s done well! It’s a capsule we have to puncture and poor on a high fat food or mix with oil to administer through his G-tube. We have been able to do it orally and sometimes that means Ice Cream for Breakfast!! Miles Loves ice cream, after the initial cold reaction to the first few bites. His hair is still thinning and he’s a bit more tired, but that’s about it for side-effects right now. We came back to Skyler’s HS Cross Country Team implementing their “Miles for Miles” Fundraiser. Pledges have been made all week. A penny per Mile the Team runs until Sunday. They also ordered shirts to be sold. Once the Boys Soccer Team heard what they were doing, they also wanted to do something. During their game on Wednesday, they did a “Juggling for Miles” during half-time while the CC Team went around collecting more donations in a hat. We went to support all that they are doing and allow them to put a face to the boy (and family) they are supporting. It was Amazing! Thursday the HS CC Team met with the MS CC Team to run laps for Miles as well! On Saturday, Miles will be the CC Team’s official Head Coach during their Meet! The Tecumseh Public Schools system and the Community have been absolutely Amazing with their outpouring of Love and Support for Miles and our Family. The MS is planning a Hat Day Fundraiser on the 18th. This will not be publicly announced to the students for whom as it was Ian’s decision how he wanted to go about it. We respect his decision. Seth’s school, Tecumseh Acres, was planning on a bracelet fundraiser. We are also looking into the Bracelets that will say ‘SuperMiles Strong’! We are just completely overwhelmed by it all. To all involved and donating, we just can’t Thank You enough. You are giving us Time with Miles without worrying about the financial aspects if we take that time. I can’t even write about it without Tears. To the students, we Thank you as well and are so Proud of you for many reasons. Mostly, we are glad you are there to support our boys who are your fellow students. As you can see, each of our boys are dealing with it differently. We see it everyday. They are Truly Amazing. As we navigate this journey, we will continue to keep a watchful eye on them and we know so many of those around them are as well. We appreciate the extra eyes. I was talking with Skyler about all his Team is doing, and the domino effect they’ve started. I told him I thought it would be Wonderful to continue to do this year after year for a different family, a cause or in Honor/Memory of Miles; whichever they choose. To keep the spirit of Giving going. He thought it was a really ‘Neat idea’! Even though he’s a ‘teenager‘, he’s a pretty Amazing young man! Our T-shirt Fundraiser ended this week as well! Thank you all who ordered and those that sent in donations beyond or in place of the shirts. I can’t wait to see them! We sold 97 of them, plus the order from the CC team. I know some have asked about where to send donations to; you can send donations to Deborah Danilowicz, (all donations need to be in her name as she is handling all bills and needs when we are unable to), P.O. Box 474, Trenton, MI 48183. We were also surprised when we arrived home with a package in the mail that contained photos of Ian. A few days later, a package with photos of Seth. Apparently, Special Days Camp did photo shoots of the kids at Camp. I’m still waiting for Skyler’s. Just Amazing and Beautiful! The builders have ordered the custom sink and are making the cabinet to get ready to widen the doors to Miles’ bedroom and our extra full-bath. The Hot Tub pump arrived and we hope have it up and going soon. On the 18th, Miles will meet the Univ. of Michigan Lacrosse Team who will be adopting him through the Friends of Jaclyn Foundation. He will be a member of the Team and get to enjoy practices, games and the support of the Team. We are excited for Miles! So many things to write about and so many Wonderful things. We can’t begin to express our gratitude to everyone or even fully comprehend it all. On another note: As of now, Miles is still doing well! It’s hard to imagine the inevitable, but we are still very aware of it. Things we don’t want to think about, but need to have done in order to fully be in the Moments to come. Right now, our doors are open to anyone that wants to spend time with our sweet Miles. We can’t guarantee the moments will continue this well and for how long. We can enjoy the Moments we are in and allow you to enjoy him as well. If you’d like to visit with Miles, please get a hold of Jim or I and we will work on getting back to you and setting up a time. We also enjoy visiting! I have a few I need to get back with already! Next week, I hope to be back on track! There will be photo slideshows of our Camp/Retreat, Tiger’s Game, Vacation and photo shoots to come. Please watch for them! Miles’ photos came in yesterday and they are Amazing! Thank you Jodi (Wildflower’s Photography) and Inspiration Through Art! Thank you! To all of you who are Walking with us on this Journey. To those Supporting, Giving, and Loving our Family. For the cards, words of encouragement and the Gift of Time. We are Blessed, in many ways! God put us right where we needed to be and we Thank Him for all of You! With Lots of Love, SuperMiles Fam
Posted on: Fri, 04 Oct 2013 21:39:58 +0000
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