Swimming makes us cry!

Yesterday my brother Mike and his wife Cindy, and their three kids - Christopher, Katherine, and Caroline, plus my dearest Dan, decided we would go swimming in Dennis pond on Cape Cod. So we drove two hours to their summer house with the donated beach wheelchair and secret hopes that I would be able to get near the water. The beach wheelchair is enormous and took up the entire space of our wheelchair van!

We arrived to big smiles and eager hands which helped with the transfer to the beach wheelchair ( I was already in my bathing suit from the start of the day!). We had a wonderful picnic on the beach, making strategies for the big attempt into the water. Needless to say, everyone helped me into the water, off of the chair, and then I was swimming and floating and walking and laughing and then we just all had a tear in our eye! To get me back onto the chair, even some strangers and the lifeguard helped stabilize the water throne which tried to float away! Then down the road to a great barbeque at my Mom's house and her famous potato salad and a 9 p..m. viewing of the space shuttle!

What a great day!!! No matter that last summer I swam far out to the boulders in the pond and this year I swam ten feet with a life jacket on. My dear husband and family made it possible for me to yell, "This summer I went swimming! This summer I might have drowned, but I kicked my legs and I moved my arms, yeah! I moved my arms around!"

New wheelchair coming in four days! Yikes!

Very emotional day to pick up the phone and someone tell me "the wheelchair is ready for delivery"! There is no way now to pretend not to be disabled, no way to pretend I still can walk, no way to say "I just use a scooter around the house!"

Today feels like a big punch in the stomach! Today I realize I really do have ALS, I really am disabled, and I really need the wheelchair! The emotions are overwhelming.

Putting a positive spin on all this means it will be easier to go over rough terrain, easier to drive once the lock in system is in place with the van and hand controls, and I will be able to travel longer distances. So I guess it will really help, but it is still so tough to know this is my new life, my future life!

July 4 on Block Island
What could be better than July 4 weekend on beautiful Block Island, Rhode Island - a short, one hour ferry ride from the mainland? Almost everything accessibility wise!!
We went to visit childhood friends from DC who had invited us to stay at their house - we knew there were four steps in, we brought our eight foot suitcase ramp and a six inch wedge. We didn't know my scooter would need to cross 50 yards of lawn and rocks before getting to the ramp!!
We didn't know the bathroom doors would be 18 inches wide, even with the door pulled off (forget privacy). We could not get the scooter into the bathroom!! We did not know that it is was a BIG step down to the deck overlooking the ocean! We did not know the bed would be four feet high! We did not know the acclaimed historical restaurant would have five steps, but no ramp - the waiters would carry me in? Too many accessibility challenges!! We left within 24 hours, to return to our accessible home! What an adventure!