Tuesday, September 24, 2013

Disneyland with Alzheimer's

We had a precious day at Disneyland last week, and even though my mother isn't able to remember it, this post is the way I'm going to remember it for her.

Here's a quick back story:

Even though I grew up in Southern California, my mother never joined us on our occasional trip to Disneyland.  She was 42 when she had me and 46 when she had my brother, and I think a day at Disneyland just felt too exhausting for her.  (But she happily sent us with my dad or my older sisters and wanted to hear all about it when we got home.)

A few months ago, we found out that my sister Linda, her husband Brent, their son Austin, and Brent's mother Ursula were being treated to a deluxe Disney vacation through the Make-a-Wish Foundation.  Austin was born with Tuberous Sclerosis Complex (you can read their story here), and he has spent much of his life in and out of hospitals and doctor's offices.  He is a sweet, sweet boy, and his parents are two of the most devoted people you'll ever meet.  We were thrilled when we found out about this special trip.  (That Make-a-Wish Foundation is amazing.)

Because Linda and her family would be at the Disney parks during the majority of their trip, and because my mom's Alzheimer's is progressing quite rapidly, my dad thought it would be nice to take my mom to Disneyland for the day--so everyone could be together.

This is Linda, Austin, and Brent (photo taken on Thursday--we joined them Friday):



I love these decorations.




I took my children out of school early that day (so grateful for the Southern California annual passes that weren't blocked out), and we met up with my mom and sister Lisa in New Orleans Square.  Grace was the first to run up and greet them (while Alia was taking the photos):


This is one of my most treasured memories.  It's a smile of recognition. 


You see, Alzheimer's has seven stages, and right now my mom is in stage six.  That means that in the next two to six years, she will most likely lose her ability to smile, to hold up her head, and to recognize her family members.  So, to me, every smile is worth a million bucks.


Right before I hugged her in this photo below, I said, "Mom, we have never been to Disneyland together!"

She got an excited look on her face and said, "Well then, we must set a date!"

"Today!" I replied with a little giggle. "Today is the day. We're here!"

"Oh, really?" she responded.  Then she looked around like a little child on Christmas morning and said, "That is wonderful!"

I'd prepared a list of wheelchair-friendly attractions that I thought she and Austin would enjoy, and even though we only made it to two of them, we had a lovely day.  (More photos below.)


First, we went on a walk to Sleeping Beauty's castle and took some photos (look . . . she's waving at you!):



Then my sister Page and my dad joined us for the new show at the Fantasyland Theater called "Mickey and the Magical Map."  (It was very cute.)






We got an extra little dose of magic during the show when a mysterious music note made of water appeared on Spencer's shirt:


He hadn't even been drinking anything that could have spilled.  So random.  (But quite fun, don't you think?)

We were planning to meet Austin and his family at that point, but since we were right next to "It's a Small World," we thought we would give my mom the chance to ride it.  I took a lot of pictures because this is one of the only rides that is fully equipped for a wheelchair to be rolled right on top:


Mom got a little nervous when she was being lowered down into the boat.


But then Lisa explained what was happening and told her how much she would enjoy the ride, and everything was great from that point on.





Alia recorded this video that I just had to include.  My mom sang "It's a Small World" the entire time.  So, so adorable!  I will love this forever.

video

After going through the whole circle, the ride operator asked if we wanted to go around again. We all laughed because that had been our family joke leading up to this day--to let my mom ride "It's a Small World" all day long . . . because it would be new to her every time. (But we didn't do that.)

Instead, we walked up to the front of the park and met up with Austin, Linda, Brent, and Ursula.  Oh, I just love them!



A few of us went on the Jungle Cruise:



and then took a little break in Adventure Land before heading into the Tiki Room:


We gathered on Main Street (and met up with my sister Laura) to watch the parade:


And I felt like I was in heaven--sitting there on the curb next to my mom's wheelchair, holding her hand and watching the dancers and floats go by.  It felt so normal . . . and so happy.  

I had just found out about the seven stages of Alzheimer's that morning (from my dad), and as I sat with her and realized how quickly our time together is moving along, I wanted to freeze that moment.

I want to remember how soft her hands feel and how cute she looks when a big gorilla character comes up to say hi.  I want to remember how she makes eye contact with me and says "I love you"--even without using words.  And I want to remember how safe and complete I feel when I'm holding on to her.  I've always felt that way--for as long as I can remember.

When I turned to my right, I saw this sight--Spencer wearing his brand new Mickey ears that he'd been saving for--

and I felt incredibly grateful for the beautiful children in my life who fill up that ache that's been growing in my heart.  Parenthood is a gift.

After the parade, we watched the flag-lowering ceremony, and that was amazing.


The Disneyland Band comes out and plays patriotic music, and they gather members of the armed forces (past and present) around the flag pole.


My dad served in the army, but he's the kind of person who never wants to call any attention to himself, so he stayed back and watched--with tears in his eyes.


I got to snuggle by him:


We then ate dinner at the Stage Door Cafe and visited by the Rivers of America while my brother-in-law Steve took seven children on Space Mountain and Buzz Light Year. (Thank you, Steve!)


And after my children and I did a whole lot of walking around trying to meet up with Eric (who was joining us after work but didn't have his Disney pass because I'd accidentally taken it with me), the whole family met up for our final attraction: World of Color:


I thought it was lovely, and I think Austin and his family really enjoyed it, but in the middle of the lights and music and water dancing, someone asked my mom, "Do you like this?'  

She simply replied, "No."

(She's so funny.)

One of the sweetest experiences of the day happened right before we left.  

Lisa and I had taken my mom to the restroom, and on the way back, my mom was acting quite confused.  It had been a long day, and she was exhausted.

"I am not your mother." she told Lisa.  "I am the person who is your mother when your real mother can't be here."

"Who am I?" Lisa asked softly.

"You know who you are." my mom responded--trying to brush off the question.

"Yes, I know who I am, but do you know who I am?"

My mom paused for a moment.  She brought Lisa around right in front of her, and Lisa knelt down so she was looking directly into my mom's eyes.

They sat there for a few seconds--Lisa with a sweet smile, hoping my mom would know her name (but realizing she probably didn't), and my mom searching Lisa's face deeply, waiting for something to trigger her memory.

Finally she gave the best answer she could give, and her words have been playing over and over again in my mind ever since:

She simply said, "I know I love you . . . very much."

Lisa nodded.  'Yes, you do.  And I love you too."

I changed the subject at that point and started showing my mom all the photos from above that I had on my camera.  I pointed to each person and told her all of our names.  I didn't even want to ask her if she knew my name because (a) it's got to be extremely frustrating for her, and (b) I don't think I'm ready for that to happen yet--to have my mother look me directly in the eyes and not know who I am.

So instead I tell myself what I know is true--that even if she doesn't know my name, and even if she forgets that she's my mom, she loves me (all of us) very much.

I'm grateful for that beautiful, beautiful day.







Friday, September 13, 2013

Book Launch Night

Our Evening of Inspiration/Book Launch was a wonderful event.


And although most of my photos are from my phone, I wanted to take just a minute to share how it went.

A huge thanks to Linda and Richard Eyre for letting us hold it at their lovely common room in Salt Lake and to Koni Smith and Saren for figuring out all the details.  Power of Moms is such a team effort.  I feel incredibly grateful to get to be a part of it.

I flew in on Wednesday afternoon, and Saren and I grabbed a quick dinner at Blue Lemon.  It's fun to get to be together in person.  We spend so much time emailing and phone-calling, and there's just something nice about talking face to face!


When we arrived at the Eyre's lovely common room, I started to feel a little giddy.  Oh, how I love being with my Power of Moms friends.  Here are Linda Eyre and Catherine Arveseth:


This is Shawna Woodworth, her mother, and her baby, Julia.  (Shawna and I were roommates in college, and now it's fun that we got to work on this book project together.)


All the authors in attendance (7 out of 12, plus Linda, who wrote the Foreword) gathered for a quick photo before the event started:

Saren, Allyson, April, Tiffany, Shawna (Julia), Linda, Jennifer, and Catherine

Then Saren welcomed everyone and got us started!


We'll have better photos to post later, but I at least grabbed a snapshot of each speaker.  Here's Allyson Reynolds:


Catherine Arveseth:


Jennifer Cummings:


Saren Loosli:


Shawna Woodworth:


Tiffany Sowby:

Linda Eyre:


(I spoke somewhere in there, and I've just posted an adapted version at Power of Moms.)

After the more formal speaking part, we gathered into small groups and had some great discussions.  "What do you feel like you're doing well as a mother?  Where do you want to improve."  Loved that time we were able to talk about the things in our hearts.

In my group, we talked a lot about discipline, and of course we discussed how much we like Amy McCready.  Then one of the moms, who had listened to my podcast with her, pulled Amy's book right out of her bag!  (Great book, by the way.)


After our discussion groups, I took a bunch of pictures with friends (some new and some from years back):



   

And I got to spend a few minutes with my sister Page (I miss her):


This is Christy Elder, who edits all our podcasts and is an amazing board member:


And my other college roommate, Laurie, came with two of her friends/neighbors who I just loved:


Here's me and Laurie:

 
I wish I had gotten a group photo.  We had about 65 mothers there, and I felt like I was in heaven.

At the end of the night, I got a text from Alia.  Spencer's birthday was the following day, and he'd wanted streamers across his door so he could crawl under them.

Alia made that happen:

Here's a close-up of those amazing streamers (they're still up):


Then, on the way home, I was chatting with Allyson Reynolds on the phone about how I think she needs to write a book of her very own, and I was so excited talking about it that I ended up in Irvine and had to drive twice as far to get back home:


Happily, though, I made it home 10 minutes before my children got out of school, and I got to spend all last night celebrating Spencer's birthday with him and the family.  He turned 6 at 5:17 p.m., and at 5:00 he ran over to me and said, "I need to give you a hug!  This is my last time being five."


I love being with my family.  They mean the world to me.  Publishing a book is fantastic, and spending time with friends at a book launch is a precious experience, but wow, nothing compares to being home with my family.

Much love,

April

P.S.  If you'd like to order a copy of the book, it's on sale on Amazon right now.  I think you'll love it!






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