Rolling to the beach, Phillies Phestival

We survived the end of school chaos and headed straight to the beach!  Friends offered us a week at their beach house which provided the gift of family time together away from our daily grind at home.  Brad grew up going to Avalon so this was super special for him to have his parents, siblings and nieces and nephews throughout the visit.  Henry was able to experience the basketball courts, we all enjoyed Kohler’s/Springer’s, Addison liked Duck donuts and best of all beach and relaxing together with trivia questions.  Brad’s brother and sister in law prepared an amazing Father’s Day dinner celebration, such a special meal and day together.  Brad found an electric beach wheelchair to try, a Drexel University graduate created the recent design, what a huge find so we could all access the beach together.  What is so cool about Avalon is the bike lane on Dune Drive!  Brad could travel in his wheels safely along this lane – talk about beach cruising!

A family friend of Brad’s gave us their accessible van.  Who gives someone a van?!  This is a big prayer answered, when you have a wheelchair you need to be able to transport it around.  Their mother, also had ALS and wanted Brad to have this van.  It is very hard to relay how thankful we feel with this grand gesture, we can travel as a family in the same car again.  The kids are enjoying being the “pit crew” to latch the chair in and work the ramp.  We’ve hit the movies already to see Incredibles 2 and Brad has been able to travel into the office weekly in the van in his wheelchair – so awesome!

This is the first year we were able to participate in the Phillies Phestival.  Last year was just too soon after getting this diagnosis to attend the event, our feet where not on the ground.  We left the beach and headed straight to the Phestival.  The Phillies partner with the Great Philadelphia ALS Chapter and host the Phillies Phestival annually beginning in the 80’s.  It is a fun afternoon of getting autographs from players, walking the concourse, The Phanatic, and lots of fun games to play.  We hope to make it to the game area next year.  Henry waited in line for a bit to get autograph’s from some ’93 team players – it was super cool.   The ALS Chapter was present and we were so happy to meet one of our social workers in person, Wendy!  It was very special to see her face and not just hear her voice.  She has set up our home health aid when I’m working, ramp program application for us to have a ramp installed, the wheelchair we have now…I know, right!

The ALS Chapter also invited us to participate in a private meet and greet following the Phestival.  Off to the press room we go, it was nice and cool in there which was a great recovery from the heat outside.  LOVE that the concourse and elevators are wheel chair accessible at Citizens Bank Arena and SO easy to navigate.  To be grouped with other families afflicted with ALS was quite an experience.  As we live with this disease we learn more about it, our kids learn more too.  You can see in all of the families, young and old how the disease is so different for each person and what that can look like, this was a first for us.  We were impressed with wheelchairs and technology capabilities but mostly how these family units carry themselves and help their loved one.

Then the Phillies casually came in and they didn’t stop, we met so many players…one by one, they stopped and met with our family.  The kids all received autographs.  Henry with the most, 27 total!  Oh my, we talked with the players and their wives – this is a special group of players.  We were really appreciative of the time, conversation and this family memory we have with the Phillies.  We met The Montgomery’s, chairman of the Phillies and Ellyn Phillips, the President of the ALS Association who partnered in the 80’s to establish this relationship between team and charity.  At the very end, we were talking with Jared Eickoff, his wife and Andrew Knapp – Andrew had Henry running around the room to get missed players autograph’s, we were laughing so hard and Henry loved every second!  Can you believe they raised over $700k that day for the Greater Philadelphia ALS Chapter.  This is amazing and we are beyond grateful for the success of this event.  It directly impacts our family, the services and items Brad has received as a recipient of this chapter are truly life altering for our family.

This event had such an impact it gave me the confidence to share a picture from the event with Brad that the ALS Chapter posted to FB.  If you know Brad, you know he has never been a fan of pictures…before!  He was an ALL STAR and was captured in so many pictures.  With Charlie Manuel, yes, the Phanatic yes, every player, yes!!!  Someone came to our house to do some work and recognized Brad from the newspaper!!!!  If I can figure out how to add pictures to post on here, I will add some!

So I’ve been struggling a lot with how to say thank you for all of the kindness offered to us in all forms: time/experiences as a family, prayers, notes of encouragement, a van, car pools, activities for our kids, meals, time with friends for each of us, get aways, places to go..all things that impact our family unit of 5.  Thank you notes are just not getting written at the moment but prayers of thankfulness are being said.  There are so many people lifting us up, every single day in many different ways – thank you!!

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