Our wedding- Lewy Bodies included

Casper and I were fully, legally, completely married this weekend. (See above photo for smiles and happiness). We were supposed to be marrying on December 14th. Then in November. Then, when we started hospice, Dr.Mall called me and said he was worried Casper would not be able to walk by November. That was three weeks ago, and I truly wondered about his overprotective side getting in the way of planning our wedding. I have learned my lesson. Score one for docs who think they are God. Ours has an inside line with the Big Guy. (Or maybe he's an experienced hospice doctor. It's your call.)

 

We bumped up the dates. I called and emailed. We got the family here. I am not sure how, actually. I'm so tired today my brain is a bit fuzzy. We managed to get caterers and bakeries and florists and organists and the church and musicians all lined up. We found a new photographer- who was awesome- and we pulled it together. The day before we had a dedicated bunch of friends helping with set up. Casper's Candy Corner came together thanks to friends from work- including her nurse. Saturday the florist made the decor come together and the various contractors arrived without a hitch. The weather even cooperated. That's a very big deal when you understand that our church is a big, beautiful, 100 year old Mission Revival building with absolutely no air conditioning.

 

But underneath it all was Casper not quite getting why all of it was happening so fast. Finally the week before she asked. Why October? Why is her sister, who never ever flies, coming to California?

 

Finally, a quiet conversation. Late at night. We are changing the date because the doctor told us too. He values you. He wants you to have this moment. For us to enjoy our wedding. Casper is quiet. Okay, then let's do it and enjoy it.

 

And so on Saturday the CHHA Shaneen came to get Casper ready. She won't allow me to bathe her, but Shaneen can convince her every time. Shaneen dresses her because buttons are now way too hard to manage. Have you ever tried to button a shirt with tremoring hands while falling over even sitting down, and then trying to keep the holes and buttons lined up? It makes "Ms. Pac Man" combined with "Whack a Mole"  seem simple. The family was assembled- Tammy, Sandy, darling one year old Alyssa and Jay from North Carolina; my sister Anne from Chicago; all three kids; best friends Sherry and Tracy; my cousin Kelly; Our niece Kelsey; our niece Linnea; the extended family, our friends... music played,"The Wedding March from the Sound of Music"- and away we went. 

 

Casper was glowing down the aisle. She was able to walk because she had her sister and brother on each side.  The wheelchair and walker were waiting in the wings. She ignored them. The flower girls charmed everyone. We met at the alter.

 

Casper tremored. Unless you knew what to look for you wouldn't have seen it. She wobbled. We held hands tightly, lovingly- and for all we had to keep her upright. Jay was watching every moment. Chloe watched from the pew. Kerry was arching her brows watching for signs of trouble. All of us smiled. Casper wobbled. We held hands as we prayed (OK, I prayed, Casper stood by and looked content). And then we had to go up the four steps to the chancel.

 

Four steps. Just four. OMG. Four! Whoops- church. Oh Goodness- four! I held on. Jay held on. I tripped on the four thousand yards of tulle on my dress (Casper chose it- it was her fault!). We stayed upright. Our minister Jane Quandt was waiting for us. Trying not to look alarmed. Jay stood by from a distance. Watching. We prayed again. I could feel Casper falling backward. She didn't feel herself fall. I looked at Jay. We used sign language of eyebrows and nods and gestures, trying not to be observed. I held on tighter. Casper looked annoyed. Remember- with Parkinson's you can't tell you are falling until you are sitting down without planning to. Casper would be heading into a candelabra with eight candles. That would not be pretty. Jay moved forward as she bobbled too far for comfort.

 

We said our vows. We asked the crowd to stand with us in our vows and marriage. We did out sand ceremony with the family- Casper could not remember what to do. The Lewies struck into the day. We made it work.

 

And then we had to process out. Down those four steps. Jay to the rescue. Then to the sounds of the recessional we strode out, holding onto each other for all we had. No falls allowed here!

 

We watched the bells in the bell tower pealing as Casper tried to figure out where they were coming from. She found a seat in the reception next to the chocolate fountain and chocolate goodies. Remember- Parkinson's loves sweet stuff! She had two plates of chocolate delights from Donna Wray. An hour later Casper was done. So done. In a good way. She couldn't remember many of her old friends. She was tremoring and jerking. She was exhausted. All she'd done was sit. We got her home and by 7pm she was snoring in deep sleep. Tremoring. Talking. Jerking. Sweating. But asleep. For 24 hours.

I talked to lots of people who attended the next day. They were so impressed that Casper "looked so good." "You'd never know she was so sick." "Wow- she did so well."  I wanted to scream. I didn't. Then I talked to nurses who attended. Others who knew us and what to look for. It was a universal "We thought about going up to hold her up but didn't want to interrupt the service." "We could see her knees buckling. We were ready, but we saw you talking to Jay." "We saw her leaning back- we knew she might fall. We were getting ready to move." With this disease it can all look so normal- even when a fall is seconds away from happening. Unless you know what you are looking for, you would never know it was there. Our little secret. Us the the Lewies. We make it work- they try to stop us. Saturday it was a battle. And our love, and marriage, and determination won.

 

We were married. She smiled. She knew she'd managed to make it through. And that was all that mattered.