Tuesday, April 2, 2019

Mama Hop's Heavenly Birthday

I've always had a minimalist decorating style.  I'm not big on trinkets/knick knacks/tchotchkes.  My home has even been referred to as "sterile" and I'm okay with that.  This spills over to the exterior of our home.  My friends have tried to convince me to paint our front door a fun and funky color but I won't do it.  My neighbors have colorful chairs and planters on their porches.  Ours is bare.  I err on the side of neutral tones and "less is more."  

So when Leanne came home talking about this angel she'd seen at a local garden center, I cringed a little.  She said that since mom is an angel and since Saturday is her birthday, she wanted to buy it for her as a birthday gift.  "Do we really buy birthday gifts for people who have passed away?" I asked.  She insisted that we do, in fact, need to buy a birthday gift for mom.

I somehow convinced myself that it would be a small, flat paver with an angel carved on it and I figured we could probably hide it somewhere in a rock bed and I took her back so that she could show me.

Lo and behold, Leanne walked straight to the largest concrete angel in the display.  This was not an obscure, flat paver, but rather a big, upright carving of an angel with elaborate butterfly wings, holding some sort of a bowl.  I could easily picture it in a 90 year-old lady's garden but for the life of me, I couldn't imagine a way that it would fit in with the aesthetic of my home.

Just like when Merryn tried to burn the church down, I could hear my mom's boisterous laughter from the heavens.

I suggested Leanne find a paver with a nice little quote that reminded her of mom.  She refused.  I pleaded for her to pick one of the smaller, daintier angels.  Her response: "No.  Mom was big.  She needs a BIG angel."  (For the record, Mama Hop was quite petite, but anyone who stands next to Leanne is "big" by comparison).

Then, I glanced at the price tag and almost lost my lunch: $110!  One hundred and ten dollars for an enormous concrete angel to give to a deceased person for her birthday!
 Not knowing where in the heck we were going to put this thing, I conceded, "Okay.  Fine.  Bring it over to the cash register so we can pay for it."  She tried to lift it and made this face:
 Thankfully, the nice man at the garden center wrapped it in burlap and shoved it in the back of my vehicle.  When I got home, the expression on Travis' face basically echoed mine when I first laid eyes on it and he said "That is what she's been talking about all this time?"  I said, "Yep."  He said, "Couldn't she choose something smaller?"  I said, "Apparently not."  So he hauled it around the back of the house, per Leanne's directive.
 She wanted it placed outside her bedroom window so that she could open her blinds and admire it daily.  She showed him exactly what she had in mind and he adjusted it until it met her approval.
 Then, it was time to sing:
My mom shared her birthday with her best friend's husband, Jay, and they always celebrated together.  So Leanne sang to Mom and Jay.  I sent the video to her best friend and he responded, "Your mom is either crying or cussing because you wasted $110.  LOL!"  Truer words have never been spoken.

Then, Leanne knelt down and embraced the angel, whispering words of love to Mama Hop.  In that moment, I knew the angel was worth every penny.
I quickly warned her that purchasing concrete monuments cannot be an ongoing birthday tradition or else my backyard will resemble a cemetery within a decade.  Leanne agreed to planting flowers going forward.

She went inside to admire the view from her room and she seemed rather pleased.
Then, we added one final touch and she grinned from ear to ear...
Happy Birthday, Mama Hop.  
We will continue to celebrate you and the loving memories that you left with us.

Friday, March 29, 2019

Josie Turns Nine!

March 28th may not be a national holiday but it's a VERY special occasion at our house.  It's the day we celebrate Josie's entrance into the world.  It's hard to believe that we've been celebrating that day for nine years now.  Our sweet and sassy little JoJo is growing up quickly and her maturity is becoming more and more apparent all the time.

My mom always said that the first eight years are the most difficult with Down syndrome.  She assured me that after that, health problems would start to subside and maturity would start to kick in and we'd be hitting our stride.  Well, I've seen evidence of that already.  Josie handled her winter health battles (Influenza A and walking pneumonia) without oxygen and hospitalization.  Her chronic runny nose was not nearly as bad this year.  And what I like to call her "get it quotient" is on the rise.  She is coming up with new things constantly that demonstrate that she's tuned in and understanding more.  
 Yesterday, Josie was celebrated both at home and at school.  Her sweet second grade teacher sent me precious photos of Josie passing out cupcakes to her classmates.  Josie came home with a backpack full of notes containing sweet birthday wishes from her friends.  After school, we headed straight to the Mexican restaurant that Josie chose and we had dinner together.

Upon arriving home, YaYa and Papa called us on Facetime so that they could join in the celebration from their home in another state.  Isn't technology wonderful?!
 When we asked Josie what she wanted for her birthday, she offered only one response: cake!  Girlfriend loves cake so Mama happily paid a visit to our local Dairy Queen and got Josie a delicious ice cream cake.
 Josie also loves being serenaded; perhaps as much as she loves cake.  Her face just lights up when we sing to her!
 Several years ago, Josie reached out and touched the lit candle on her birthday cake and mildly burned herself.  Merryn was more traumatized than Josie was.  Ever since, Merryn keeps a snug embrace on Josie whenever she's in the presence of lit candles.  That's why we call her "Mother Hen." 
 The close monitoring of an overprotective little sister is superfluous in light of Josie's aforementioned "get it quotient;" she knew exactly what to do! 
 She took a deep breath and blew hard until each and every candle was extinguished!
 The next photo is a little blurry but the expression of exhilaration on Josie's face is too contagious not to share.
 We got started opening gifts.  YaYa and Papa gave Josie some snap together letters so that she can practice both fine motor skills and spelling (and activity that she loves and excels in).
 Leanne selected a singing hen from Hallmark that sings "It's springtime and I know it" to the tune of LMFAO's "Sexy and I know it" while laying eggs.  Josie became instantly obsessed.  Way to go, Aunt Leanne!  
There were more fun and educational gifts to come thanks to Mom's Lakeshore Learning haul.  We can't wait to dive in and explore!  

Special thanks to everyone who offered up birthday wishes to Josie via social media.  We're glad that you appreciate watching her grow into the feisty and independent little girl who makes us so proud.
Happy Birthday, Josie!

Thursday, March 21, 2019

World Down Syndrome Day 2019

3/21| March 21st

Down syndrome is a condition characterized by a third copy of the 21st chromosome so it only makes sense that on the 21st day of the 3rd month of the year, we celebrate World Down Syndrome Day.  It is a global day of awareness, observed by the United Nations.  It's a day in which we celebrate our loved ones with Down syndrome.  We advocate for their rights to education, healthcare, and inclusion.

Today (and every day) we celebrate Leanne and Josie and the profound impact that they have had on our lives.  They have enriched our world with sincerity and love.  They have taught us valuable lessons far beyond what we can learn in school.  They have made us better people and for that, we are eternally grateful.  

Happy World Down Syndrome Day!

Saturday, March 2, 2019

Serenity: Another Leanne Update

The other day, I overheard Leanne self talk:

"Mom passed away.  She's in a better place.  God needed her.  I'm in a better place, too.  Sister needed me."

Such a simple justification for the profound loss that she faced, and yet spoken with such peace.  It also underscored the importance of her self image as that of a contributor upon whom this family relies.  God needed mom so she had to answer that call.  I needed Leanne, and she has dutifully and proudly come to help me.
 While my mom was alive, Leanne's primary role was that of a daughter.  Sure, she was a friend, a neighbor, a sister, and an aunt; but those were secondary roles.  Upon my mom's passing, she recalibrated her identity; her primary role is now sister/aunt.  
The tranquility of this transition is what continues to astound me.  It's as though she looks at the situation and asks herself, 'what is my purpose?'  Then she rises to the occasion and proceeds to fulfill her role to the very best of her ability.
Aided by her unwavering faith, Leanne has a gift of serenity.  Yesterday is gone.  It's not forgotten, but it's not dwelled upon.  Tomorrow will come, but no energy is spent worrying about what trials it may bring.  Today, in this moment, Leanne is focused on being as purposeful as she can.  Her personal fulfillment is found in offering love and support to those around her.  
Watching her navigate life and loss with such poise and faith has both inspired and humbled me.  And sometimes that alone, is a grief trigger.

The other night, I was in her room and she showed me the display Valentines cards she had offered to our mom and I crumbled.  It took me days to excavate the strength to write this post.  But I've always said that Leanne has been my greatest teacher and this is a perfect example of that:

It called to mind "The Serenity Prayer."  Most of us know the first verse:

Grant me the serenity;
To accept the things I cannot change;
The courage, to change the things I can;
And the wisdom, to know the difference.

But the prayer continues...and this is the part that really resonates with me when I think of how Leanne has handled our mom's passing:

Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
As it is, not as I would have it;
Trusting that He will make all things right
If I surrender to His Will;
So that I may be reasonably
happy in this life
And supremely happy with Him
Forever and ever in the next.

During the past eight years, a common message has repeatedly surfaced on this blog: a person's value is not determined by his or her IQ score.

The Story Travis Didn't Want Me to Share

Living with Down Syndrome

Experiencing death and bereavement with Leanne has further reinforced this message for me.  She has so much to teach and I have so much to learn.  And I am forever grateful for the experience of having her in my life.

Saturday, February 9, 2019

Disney Vacation 2018: Pool & Beach

Disney World, and the wonder of it all, cannot rival the time spent as a family in the more serene moments of our vacation.  That's why the memories captured in the photos in this post are embedded in a more sentimental place in my heart. 

Cocoa Beach is only an hour's drive from Orlando.  We wanted to seize the opportunity to play in the sand, frolic in the waves, and allow Lydia the chance to experience the ocean for the first time.  After a brief detour to the Kennedy Space Center, we headed for lunch at an adorable little dive called Jazzy's Mainely Lobster.  The scrumptious lobster bisque was the most remarkable cuisine of the entire vacation.  After filling our bellies with incredible seafood, we were off explore the shoreline.

We are a water-loving family.  Our time spent at the pool was enveloped in smiles and laughter.  

 See, Mom?  I put plenty of sunscreen on Leanne.  No sun burns on my watch!
 Josie and Leanne's signature love fests often delay our activities.  It's something we must come to expect.  Merryn's eye roll, though!  Ha!

Disney Vacation 2018

We've talked about taking the kids to Disney World forever.  We were just waiting until the kids seemed to be the ideal ages: old enough to remember it but still young enough to be enchanted by the magic of it all.  We timed it perfectly.  Our family vacation to Disney World sent our rough year out on a high note.  

The weather was perfect.  Our resort had a heated pool so we were able to swim.  We even took Lydia on her first trip to see the ocean during a day trip to Cocoa Beach.  More pictures to come!  For now, here are a few photos from Disney World's Magic Kingdom and Hollywood Studios: