These last few days has been filled with ups and downs around here. That seems to be the new normal for now. Steven and I were both feeling pretty down and sluggish and even as we tried to lift our spirits by hiking, strolling, and running useless errands … we were both feeling pretty empty. We were grateful come Sunday to be a part of the Hope Kids Walk because it lifted our spirits to see lots of Warrior Babies with smiles and just overflowing with hope. We also were reminded how supported we are by the Hope Kids support system (they did not just go away).
Driving to the event for set up … I found myself overwhelmed with emotions. Even at one point, considering turning around and skipping the event all together this year. Then as I saw all these beautiful children, many of them beating the odds … my spirits were lifted. Family and friends arrive to support us and we met so many families we have been connect to via the Internet … but this time we actually got REAL hugs. That part was so wonderful. Wylder’s book left in the hand of 15 more Hope Kids who’s faces literally lit up with delight as they turned each page. It felt magical.
Seeing the children react to the books was such a treat for me. It was like they “got it”. As I read Wylder’s book I often find myself hoping parents will get messages as they read it to their little ones, but this time , this weekend I saw the kids. There eyes lit up .. they could relate. They saw the mask Wylder was wearing on the first page and recognized they often wear one themselves, they giggled at the dog, and when they saw the oxygen tubes .. they point to their own. I realized it was the first time I saw a kids reactions, that related to the book … most of the books have been sent out and I don’t see your children enjoy it in your living rooms. I was happy that they recognized the medical gear and that they liked to see it in a book. I also find it fascinating how so many special needs children just dive into books. What a love they have for them. Wylder was just the same. Toys came and went … but books where his love. This got me thinking again, YIKES …I know, a scary thought … me thinking so much (tee hee). I am putting together a Wylder Nation Kids Christmas Challenge. I am excited. It is in the VERY early stages and will be simple, but I will get to the scoop to all of you soon. If you know of any elementary/preK schools in your area that like to give back … please email me and I will give you the inside scoop. email@example.com
More good news is that Steven is going to be able to come to Nantucket for part of the stay. Wew hew hew. He is gonna love it there, I cannot wait to see if this island has the same affect on him as it did on me. On the final day of his stay he has also planned a meeting with Genzyme. For those of you that have not been following Wylder’s blog for 2-1/2 years … Genzyme is committed to discovering and delivering trans-formative therapies for patients with rare and special unmet medical needs, providing hope where there was none before .. and they are in Boston. Steven worked hand with them and Mount Sinai when we were attempting to get a single Patient IND for Wylder in early 2011. They even met Steven in NY for research discussions and are pivotal in future research and bring meds to market (perfect timing for Wylder Nation becoming a non-profit soon). This will be Steven’s first time to the facility and he is amped! Hope your weekend were filled with lots of love and giggles. xoxo