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.

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.

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!

Thoughts on September 11th

On September 10, 2001, Eric and I found out we were expecting our little Grace.  We'd gone through a miscarriage a few months before, so it was very exciting news.

Then the following morning while I was still in bed, I received a phone call from my husband, who was already at work. He told me that the twin towers had been hit by airplanes and that everyone thought it was a terrorist attack.

I spent the rest of the morning gathered with two other mothers in my neighborhood. We were frightened and worried and just needed to be together.

I couldn't help but wonder what kind of a world I was going to be bringing this baby into. I felt vulnerable and scared.  A little part of me wondered if perhaps this world simply isn't a place for children anymore.

Now, 12 years later, I can see that although there are terrible things going on in the world, there is nothing but hope for deliberate mothers. If anything, there has never been a time in history when deliberate mothers were more needed or when their voices could have as much power and influence.

I'm about to step on a plane right now so I can attend our book launch event in Salt Lake City tonight.

In case you are new to this blog and Power of Moms, our book Deliberate Motherhood was just relaunched last week with a new publisher. And tonight we are going to celebrate by hearing from several of its authors and gathering with other deliberate mothers to discuss how we can more powerfully fulfill our roles.

When Saren and I were planning this event, we wondered if perhaps September 11th wasn't the best date for such a gathering.  "Isn't it a day for mourning?" I thought.  But as we discussed what we were going to be doing at this event, I realized that I couldn't think of a better way to remember those who died or honor those who support our country than by doing something to make our families--and thereby our nation--stronger. 

I love our country.  I love motherhood.  And I feel privileged today to get to do just a little something to make this world better for the next generation.

Boarding call!  (Time to go...)

Love,
April

When You Are Hormonal, Don't Talk to Anyone

I just shared this epiphany of mine with my husband:

"When I am hormonal, I shouldn't talk to anyone.  Because I will say something I don't mean, and then I will regret it, and things will frustrate me that really aren't that big of a deal, and the whole world will seem wrong, and I won't see things as they really are."

After listening patiently, he responded, "Will you please go write that down somewhere? And I will etch it in stone?"

Very funny.

But here's why I said it:

This morning was a disaster.  I didn't sleep well, I'm not feeling well, and it's a very hormonal time for me.

A child of mine was also having a hard morning, and so the two of us clashed . . . quite a bit.  We weren't yelling at each other, and it wasn't that bad, but for me, it was tragic.

I got overly frustrated about something that wasn't that big of a deal. (Or maybe is a big deal.  I just can't see clearly right now.)

And then my child reacted negatively to my overreaction.

I dropped that child off at school--both of us in a huff--and then I drove home as a bit of an emotional basket case.

I ranted to my husband for awhile about what a bad mom I was this morning and how I feel like a hypocrite when I do Power of Moms if I'm not mothering the way I should--ESPECIALLY on the day that our book is released.  (Hello!  If I publish a book called Deliberate Motherhood, should I not be the model mother on its launch day?)

And then Eric said the right thing (as usual) and told me I would be a hypocrite if I didn't have challenges I could write and teach about.  Because who wants to hear from a perfect mother who has zero challenges?

I felt a little better after that.

And now I'm writing my new "When-I-Am-Hormonal-Don't-Talk-to-Anyone" rule here on my blog--where it's out in the open--so I won't forget this great piece of advice.

Of course, I'm talking to you right now, and that's kind of breaking the rule, but I'm thinking you'll forgive me.

(Anyone else have special rules they follow?)

Much love,

The not-so-perfect-mother-whose-mothering-book-is-launching-today-and-I-really-AM-excited,
April

Still Smiling About My Last Trip to Long Beach

This has been a fun week.

Deliberate Motherhood is launching tomorrow, Alia is working hard running for a student council position at her middle school, and our fall family routine is in full swing.  There's definitely a lot of craziness going on in the midst of all these activities, but in general, life is good.

I just wanted to take a moment to post my most recent photos and experiences from Long Beach.  This blog has been a special place for me to share some of the really hard moments with my mom and her dementia, but I also want to be sure to share some of the happy ones.

This past Thursday was happy.

We started out with a walk to the local elementary school.  While my boys played on the playground, my mom and I sat by the lunch benches and listened to music.  I got the idea to play music from my dear friend Janine, who told me that it helped one of her extended family members.  And it worked!

My mom liked tapping my iPhone, and with each new song, she would close her eyes and pretend like she was conducting the music.  It was peaceful and beautiful.  (This photo is from Alia.)

It happened to be my parents' 55th wedding anniversary that day, so although we didn't have anything fancy planned, we all gathered around the table for pizza, and then during dessert, Alia put two birthday candles in my parents' bowls of ice cream, and we sang "Happy Anniversary to You" to the tune of "Happy Birthday."

After the dishes were cleared, I thought it would be fun to take my mom out on another walk, but that "Happy Birthday" tune was still in her head, and somehow she was convinced it was my Dad's birthday. (It's really in December.)

"April, the children would be thrilled if we could go into the kitchen and sing Happy Birthday to your dad." she said.

"Oh, I think he's okay," I replied.

But she insisted that we sing, and so all of us gathered in the kitchen and tried not to laugh while we sang some birthday cheer to my smiling dad.

Mom sang her very best--adding in some harmony--and then she wanted to gather in the living room to sing some more.  We sang three different birthday songs and had a great talk with my dad about his favorite birthday parties growing up.  After all that, my mom was satisfied and agreed to another walk.

This time, we went over the bridge to the local library.  It's a lovely place.  You can't really tell by this photo, but directly out those windows is a gorgeous view of the bay.  Doesn't that look like fun? 

I spoke with the man at the desk, and he told me that even though I'm not a Long Beach resident, I can still get a library card there.  (SO exciting!)  This is going to be our new weekly stop.

My mom was a little bit confused, and she kept asking the man over and over again how she could also get a card.  (Did she need her license? Would they let her come next week?)  He wasn't sure why she was repeating herself so many times, so he turned to me for clarification.

I tapped the side of my head and mouthed the words, "She doesn't know."

With a kind smile, he then turned his full attention back to my mom and assured her that she could absolutely get a library card, and he couldn't wait to see her next week.

That meant a lot to me--seeing someone treat my mom so kindly, even when she acts a little out of the ordinary.  We're going to be that library's best patrons.

Once we returned home, I helped my mom into her jammies while Spencer played in her wheelchair. (His favorite toy!)

Then I caught these photos with my phone when my mom was reading nursery rhymes to Alia. (That's a new tradition that keeps her focused on something pleasant.)

Alia recorded this 20-second video with her phone. (That's Ethan in the mirror.)  I had to post it here so you can hear my mom's sweet voice.  (The volume is really low, but this video shows so much love.)

Isn't she an angel?

Oh, I love her.

It was a special blessing to have such a wonderful visit, and I am still laughing about all the funny things she did.

For example, she helped take the grapes off their stems in preparation for dinner, and she was hilarious.  She'd put some grapes into a bowl, dump them onto the table, wrap them in a towel, and then put them back into the bowl. Those grapes kept her totally occupied.

When we first sat down at the table to eat, the children were starting to snack on the food, and my mom said, "Nobody eat until we've had the prayer."

My children all placed their hands in their laps.

And then my mom immediately picked up her piece of pizza and took a bite.

Everyone looked at me, and we tried not to laugh too hard.

Later, when I offered to help her in the restroom, she said, "Oh no, I'll go alone.  I'm just fine."

"No Mom, I'm your special helper!" I replied.

"Well," she said, a little embarrassed, "I've never had a daughter help me in the restroom!"

(My dad and I giggled about that.  It only happens about five times a day.)

I feel like I'm slowly growing out of these "sad" phases.  Of course my heart still hurts for her, but those hard times only make the sweet times more sweet.

Thanks so much for your support.  I appreciate the messages of encouragement from my friends--and from the people who have never even met me.  Thanks for sharing your advice and helping me know how to handle this challenge well.

You mean a lot to me.

Much love,
April