World Down Syndrome Day 2021

 March 21st is World Down Syndrome Day.  Down syndrome is characterized by three copies of the 21st chromosome.  3/21 - get it?  

I was welcomed into the world by a big sister with Down syndrome.  I credit her as the single most influential person in my life.  She had such a positive influence on me, that ten (almost 11!) years ago, my husband and I decided to start our family by adopting a baby with Down syndrome.  We now all live together under one roof and it is a blessing to see these two interact daily.  They enrich our lives with their authenticity, candor, humor, and an abundant outpouring of love.  

Today was Leanne's first day back in her Eucharistic Minister role at church.  She's now fully vaccinated and ready to serve God and her fellow parishioners.  It was the perfect way to start our World Down Syndrome Day.  I know our mom is watching her from heaven with so much pride.  

I wish everyone in the world were lucky enough to have an individual with Down syndrome in their lives.  It's part of the reason we share our lives on the blog and on Instagram.  Because knowing Josie and Leanne offers a beautiful reason to celebrate this holiday. 

Happy World Down Syndrome Day!

Merry Christmas 2020

 Was it the best year ever?  Certainly not.  But there's still a lot of love to celebrate.  

Merry Christmas!

2020 Christmas Card Reveal

 As 2020 winds to a close (thank HEAVENS!), and we reflect back on the unprecedented times that we experienced, it's absolutely overwhelming.  It's the kind of thing we'll undoubtedly tell our grandkids about as they gaze at us, eyes wide with curiosity and bewilderment.  

I remember the initial terror - my neighbor bringing me an item, wrapped in a Clorox wipe, and setting it down 10 feet away from me because neither party was sure that the other wasn't contaminated with a lethal virus.  Fearful parents warning small children not to get close to their friends because it may make us sick.  Blasting out texts to neighbors that "The Walmart on Lincoln Ave. has toilet paper!  Hurry!"  Oh and that hand sanitizer that smelled like cheap tequila mixed with vinegar that we were eagerly dousing our hands in because GERMS!

It's been an emotional roller coaster with no end in sight.  One minute, you feel like you're facing doomsday...then you relax a bit...then, you hear of a Covid case taking the life of someone your age or younger and the panic starts all over again.  We cancelled vacations and birthday parties (I had a GOOD one planned for Josie), postponed visits with loved ones, and waved at Santa from the safety of our enclosed car.  We worked from home, attempted to homeschool, and took walks but did not play on park equipment.  I remember a guy offering to take my cart from me after I unloaded my groceries into my trunk, and I felt equal parts flabbergasted and flattered "He doesn't think I'm a contaminated germ factory?!  He wants to touch something I've touched without bleaching it down first?!  What in the world?!?!'  It would behoove me to write down some of these moments that stand out in my mind as I hope they become a piece of history - something that we can shove out of our minds until our grandchildren ask us to reminisce.  

This year, even more than in years past, I felt ample reason to drop holiday cards from the priority list.  Honestly, 2020 has became an adequate excuse to dodge just about any activity you may have otherwise felt obligated to partake in, right, Josie?  

Furthermore, in perfect accordance with the Murphy's Law that is 2020, my expensive camera lens rolled off the table and broke.  As if the cost of the repair wasn't enough punishment for me, "Covid delays" mean that it won't be returned for weeks...certainly not in time for Christmas cards.  So that's it - I gave up.

But then, I considered how everyone feels especially isolated and lonely this year.  If there ever was a year to try and send a little cheer in the form of a cute holiday card, it's 2020; even if the image was lacking the vibrant and crisp touch of the DSLR camera.  Then, Merryn politely implored me to maintain this tradition with the most eager anticipation, assuring me that if I said "yes," she would handle the bulk mailing all on her own.  

As with years past, it was important to try and add elements of creativity and humor into the card (See years past here, here, and here).  And because 2020 is so anomalous, and because eliciting smiles is so desperately needed this year, it was important to commemorate this somber year with comedy and levity.  Remarkably, it came together with ease and despite the subpar cell phone-quality photo, it turned out to be one of the most well-received cards we've done.  Without further ado, the 2020 Christmas card reveal:

And just like that, I had a tiny grief trigger, realizing that my mom wouldn't read this post (or maybe she will - who knows?).  She would have loved this card.  She always pressured  *ahem* enthusiastically encouraged us in the pursuit of the perfect holiday card. She would have approved.  

Wishing you a happy and healthy holiday season and extra prosperity in the new year!

December Update

 The other day, I was in Target picking up some essentials and I walked past an older woman talking on her phone.  She had it on speaker and she told the female voice on the other end of the line "I love you" before she hung up. Just like that, grief sucker punched me in the gut and I had to duck behind a display and collect myself.  Two years later, I'm reminded of the void left by my mom.  It's those little things that don't even faze you at the time - a brief phone call ending in a declaration of love, as every phone call did - they leave a gaping hole.

Isn't that the theme of 2020?  Everything we took for granted in the past is now poignantly missed.  

An email arrived in my inbox from one of mom's friends; she was seeking an update.  The update is that we're doing quite well, all things considered.  May was quite traumatic with Leanne's choking incident, and we've had many subsequent appointments, tests, procedures, and feeding therapy to try and get to the root cause of the issue and to improve matters.  After Leanne's recent esophageal manometry showed very little muscle motility and pressure in her lower esophagus, and given the backdrop of her esophageal atresia surgery during infancy, the dilations, scar tissue, and imaging they have to date, the GI doctor made a referral to Mayo.  In the meantime, Leanne still struggles to eat slowly and carefully so we're erring on the side of softer foods to keep her safe.  A consequence of her condition is weight loss and we're actively trying to boost her calories to prevent further weight loss. 

While the aforementioned circumstances have been stressful, Leanne continues to demonstrate an enviable resiliency!  She maintains a positive outlook and she rejoices in the smallest victories.  Her daily commitment to faith and prayer are inspiring.  She prays for an end to Coronavirus.  She is desperate to return to her daily activities of work, volunteering, and socializing.  

The pandemic has devastated so many families and our hearts go out to everyone who is struggling. The kids deserve to be commended for how well they've adapted to disruptions in school and other activities.  A certain carefree childhood innocence is purloined in having to explain the gravity of the situation to them.   As parents, we have tried to brainstorm ways to safely have adventures (fishing, anyone?).  

The girls were rightfully disappointed when we postponed plans to unite with Travis' family for Thanksgiving.  With Christmas around the corner, sitting on Santa's lap has been replaced by a drive-by wave to Santa.  But when it comes right down to it, we are grateful for our health and I believe hindsight will illuminate the creative ways we adapted and made the most of this unprecedented time.  

We still have Christmas cookies and Hallmark movies and car rides through the neighborhood to look at Christmas lights.  Not to mention a whole lot of family togetherness, which, during its finer moments enhances our bond, and during its challenging moments, builds character (trying to be positive here - ha!).  

As par for the cursed course of 2020, my DSLR camera lens rolled off the table and had to be sent off for expensive repairs.  The last photos taken with the camera appear on this blog post and leave me in eager anticipation of our reunion with the refurbished lens.  File that under #YouDontKnowWhatYouHaveUntilItsGone.  My New Years Resolution will be to print, frame, and display more photos of these precious faces. 

 

With the holiday season among us, we wish you all peace, hope, love, and health.  Stay safe!

Elizabeth’s Party with Strangers

I always teased my mom about how she threw Leanne these elaborate birthday parties and I got nothing.  She would promise to throw me a big party, too.  I would laugh and tell her that unlike Leanne, I didn't have hundreds of friends to invite.  So in this moment, with tears streaming down my face, I felt my mom there.  Of course she was in on it.  Mama Hop left my birthday in Leanne's hands and Leanne saw to it that I was properly celebrated.  I will never be as popular and beloved as Leanne, but Leanne loves me more than a million people combined ever could.  10-10-2020. 

The Most Terrifying Moment

Living in an era of the Internet, where information is disseminated easily and rapidly, deciding what information and how much detail to share can be difficult.  We've received multiple inquiries about our silence on social media lately and finding the appropriate response has been a challenge.  I consider Instagram to be a digital photo album where we preserve memories.  However, there are some moments in life that we'd rather not remember.

While this story I'm about to share is not a secret, it is personal.  And sometimes social media can feel impersonal, frivolous, and even invasive.  However, we've always strived for honesty, and more importantly, we realize the inquiries are coming from a place of genuine concern.  

Last Saturday night, Leanne had a choking incident so severe that she turned blue and lost consciousness.  An ambulance was called and fortunately, she began breathing before the paramedics arrived.  

Given that we are currently experiencing a global pandemic, the paramedics confirmed that her vitals were strong, and advised against taking her to the emergency room.  Leanne's physicians have been notified, and she is scheduled to have an EGD (Esophagogastroduodenoscopy) next Wednesday.  

That incident was the most terrifying experience of my life.  But in reflecting on that traumatic moment, Mr. (Fred) Rogers famous quote comes to mind, 

"Look for the helpers.  You will always find people who are helping." 

Everyone was outside, and when I went to the door and screamed for help, multiple neighbors came running.  Travis dialed 911 and followed the instructions provided by the dispatch operator.  Our neighbor appeared in the doorway and he picked Leanne up and attempted to do the Heimlich.  He did not leave her side until the paramedics arrived.  His wife lead the triage, addressing the needs of the various family members.  Another neighbor ran to get a doctor who lives down the street.  One neighbor ushered Biddy outside while other neighbors rallied to distract and calm my children.  And one neighbor held me while I sobbed.  

The heroism of this group of people who heard my cry for help, had no clue what was happening, and came running anyway is something that I will never forget.  When the EMT's arrived, one asked if everyone standing in our home was family and my next door neighbor replied, "We're neighbors but we are a family."  And that means so much to someone who has so little family left.

At Leanne's pre-op appointment today, I tried explaining how terrified I felt and the doctor said, "I get it; she's your person."

I thought about that for a long time afterwards and ultimately concluded that Leanne is not my 'person'."  Travis is 'my person'."  Leanne's role in my life transcends human relationships for me.  She's like a guardian angel who has always been by my side.  I don't know who I am without her.

And that leads me to why I am sharing this story: When Leanne finally regained consciousness and calmed down, she addressed each of my neighbors individually and insisted that they pray for her.  She named their children and insisted that their children pray for her.  Leave it to our diva to demand a prayer vigil in her own honor.  Travis says "That's the moment I knew she was okay." 

To that point, please keep Leanne in your thoughts and prayers as we take the necessary measures to ensure that her health is restored.  

The blogosphere prayer warriors have always been there for us and we truly appreciate your concern and support.

Coronavirus 2020: A Social Story

Hello to our virtual friends!  Never before have we experienced the importance of our ability to connect online like we are experiencing in the wake of the Coronavirus.  Difficult scenarios like this one present an opportunity to see the best that humanity has to offer; even in isolation, people are uniting to support one another through this unprecedented challenge by sharing ideas, prayer, and uplifting stories.

Here at our house, we're trying to put a positive spin on things.  The girls have been finding creative ways to entertain themselves.  You can find more of our adventures documented on Instagram @CatfishwithKetchup.

But for individuals with special needs, a disruption in the daily routine can be upsetting no matter how you spin it.  That's when social stories come in handy.  After a chain of Leanne's activities have been canceled, it was time to break the difficult news to Leanne that she could no longer go to work.  Josie needed to know that she would not be returning to school anytime soon.  And they needed an explanation that was neither alarming nor ominous.  So I did what I always do and I wrote a social story.  

I made a generic version of it to share with our blog followers.  You can find it HERE.  If you're inclined to write your own custom social story, check out the tips that can be found in this post.  

We read through the social story as a family and then the girls asked questions.  Leanne asked what she's supposed to wear; her daily schedule dictates what she wears whether she's going to the gym (exercise clothes), going to work (uniform), or volunteering in the community (business casual), or church (formal).  This is the type of logistical question that I would expect when her routine has been disrupted.  Then she asked, "Is my birthday canceled?"  Bless. Her.  Heart.  I had to fight back tears on that one.  I told her that I could not promise friends nor a meal at the restaurant of her choice, but that nothing would stop us from celebrating HER here at our house.  

In these uncertain times, we must get resourceful and creative.  But above all, let's focus on the most important thing: loving one another.

  

Stay home.  

Stay healthy.