And People Think Having a Kid with Down Syndrome is Hard...

The other night, we were having an informal cook out with the neighbors.  Merryn was running in and out of the house, filling up a dozen cups of water, dripping it everywhere, failing to shut the door 90% of the time, welcoming every fly in a 5 mile radius to come on in and enjoy the amenities like unlimited air conditioning...Lydia had cast her plate aside, chunks of hot dog painstakingly cut into choking-hazard-proof bites all over the driveway, and she was sprawled atop the yellow roof of a red Little Tikes car, having an epic threenager tantrum because our neighbors' son had the audacity to take a turn driving it and she was NOT having it.  Josie was calmly perched in a kid-sized lawn chair, politely using her utensils to happily eat the meal that had been placed before her - vegetables and all.  I looked over at my neighbor, gesturing to the little blond beacon of calm amidst the storm of chaos and joked, "And people think having a kid with Down syndrome is hard..."

I actually make this joke quite frequently as Josie's mellow temperament and leisurely pace are a stark contrast to the noisy, high-energy, demanding pace of her sisters.  

 My mom always said that Leanne was so easy to please.  As a child, she had a select handful of items that kept her happy and entertained for hours - namely, Little People and the corresponding school bus.  Likewise, Josie is content with a few simple favorites - she likes singing animals, music, and bubbles.  She never seems to get tired of any of those things.  In a world of constant consumption and instant gratification (ever read "Berenstain Bears Get The Gimmies"?) it is refreshing to raise a child who isn't as easily sucked into that culture.  Simple things make her happy.  Leanne is that way to this day.

So IS parenting a child with Down syndrome hard?  Let me level with you: parenting in general is hard.  So, so hard.  I can't tell you how many moments I've felt like I was not cut out for this job; numerous instances when I'm convinced that I'm failing miserably.  There have been scenarios when I know I have not been the image of the mother that I want my kids to remember, but rather a story that they'll share with their therapist in 20 years.  And I'm only 7 years into this journey!  I'm sure a more seasoned mother would tell me that I haven't seen anything yet!

The thing about raising kids is that regardless of chromosome count, they all have different needs.  They all have different strengths and weaknesses.  And as a parent, you don't tally all of the different ways you adapt to support each individual child throughout the day; it just happens naturally.

Sure, if I look back on it, raising a kid with Down syndrome has had many unique hardships, primarily because Josie has had many different health issues that I felt ill equipped to deal with.  But she was my child and I assumed the role of honorary medical professional; it was never a title I aspired to, but I learned because that's what was required to provide the care that Josie needed.  But all kids with Down syndrome are different.  Not every child with Down syndrome went through the buffet of health issues and took a little helping of everything.  Some kiddos with Down syndrome are born perfectly healthy.  And guess what: some typically developing kids are born with health issues.  Typically developing children can have heart defects and respiratory problems, too.  

I recently had a good friend look at Lydia endearingly and say "I miss that age."  I spewed my beverage across the counter and sputtered "You can have her."  Of course I was joking, but I've come to realize that toddlers are not my strength.  Before Merryn matured into "Mother Hen," we affectionately called her "Hurricane Merryn".  She was on a mission to destroy everything in her path, including my sanity.  Of course we managed to somehow survive, and by age four, I decided I would keep Merryn and I haven't looked back.  Of course we thought Merryn was a challenging 3 year-old...until we met Lydia.  

When Lydia tries my patience, I remind myself that I just have to make it through the year.  Age four will be better (I hope...for the sake of my liver).  

But Josie didn't experience ages three and four in the same defiant, destructive, tantrum-throwing, patience-testing manner.  Of course she didn't - everyone knows that kids with Down syndrome are perpetually happy.  Just kidding!  That's a myth.  Josie never cried much (now whining - that's another story).  Josie didn't seek out trouble; in fact her gross motor aversion ensures that she stays safely planted on her rear end for most of the day.  Balance and stability are not strengths for Josie so climbing was never an issue.  But that's just Josie.  Some kids with Down syndrome love to run, climb, and explore.

All kids with Down syndrome are different.  All kids are different! 

Isn't it funny how siblings can be raised in the same household, by the same people, with the same values and rules, and still turn out to be very distinctive and individuals - sometimes total opposites?  It's because we're all born with our own personalities - a Down syndrome diagnosis doesn't change that.  Josie is our most laid-back and mellow kid.  That's just the way it worked out.  

Kids don't come with instruction manuals.  When you enter the vocation of parenthood, you truly have no idea what is about to come your way.  But with a heart full of unconditional love and a little patience, you've got the tools you need.  (But keep a bottle of wine on hand - just in case).

Aunt Leanne Turns 40

Greetings!  Happy Summer 2017 to everyone!  We kicked our summer off with the most memorable bash of the last decade: Leanne's 40th Birthday Party!

We haven't attend a soiree this awesome since...well, since Leanne's 30th birthday party.  Only this time, Travis and I came with 3 additional guests that didn't exist when Leanne turned 30 (wink).  And of course when we celebrate another decade of Leanne, Mama Hop goes ALL OUT! 

You know, she commissions personalized invitations, reserves the country club, hires a DJ, takes out an ad in the paper, rents a billboard with Leanne's picture on it...(okay, maybe she didn't go THAT far, but hyperbole is always necessary when it comes to Mama Hop).  But even with all of the aforementioned pomp and circumstance, a party isn't a party without fun-loving guests who show up ready to celebrate and cut a rug.  It's a good thing that Leanne has a tight knit circle of friends who wrote the book on how to have a ball!

There were so many handsome suitors who were ready to boogie.  You might recognize this handsome face: Mike! 

You know it was a terrific party if Travis hit the dance floor!

Our beloved Uncle Jim was there.  There are no words to describe what a blessing this man has been to our family.  When our dad (Jim's brother) died, Jim offered invaluable fatherly guidance and support and he led us through that difficult time.  He has a heart of gold and we are so glad that he could join us.

  Uncle Jim's two kids are our only first cousins and both of them traveled to be there to celebrate Leanne along with sweet cousins on my mom's side as well.

Here's a brief video clip that does a pretty good job of summing up the vibe.  No party is complete without a conga line!

In addition to celebrating Leanne's birthday, we had a belated birthday celebration for Lydia (AKA "Biddy").  Biddy just turned 3 at the end of May and Mama Hop indulged her with clothes and dolls!

As we've come to expect, The Divas had one love fest after another.

We also got to see Leanne and her friends participate in Special Olympics bowling.  I know I've said it before but if you ever have a chance to attend a Special Olympics event, please do.  The atmosphere of sincere teamwork and encouragement will lift your spirits and make your heart soar!

We got to spend a little extra time with Cousin Steve and his delightful wife, Jen.  Their two kiddos, Elias and Emily, are so much fun; it's no wonder when you're with their fun-loving parents.  Who doesn't love a 6 and a half foot grown man flying high on the swings?! 

We really enjoy their company.  Someday, I'm going to convince Jen to do a guest blog post because she will have you rolling on the floor with her smart and sassy wit.  

Perhaps the best part of the day was gathering the children for a group photo.  If I can't get 3 children to look and smile at the camera, I'm not sure why we expected better results by adding two more hot, sweaty, and sleep-deprived kiddos to the mix.  But I think we can all agree that the unstaged photos are the most frame worthy.  This is real life, Folks.  Real kids.  And we wouldn't have 'em any other way!

And just in case this one post hasn't showcased enough of the awesome personalities that we're fortunate enough to surround ourselves with, let's just blow it out of the water by adding blogosphere celebrity, Brenna Westlake, to the mix!  As geriatric as it makes me feel to admit it, I used to babysit Brenna's mother, Courtney, years and years and YEARS ago.  How cool is it that our kiddos now have an opportunity to play together?!

Brenna has the sweetest little disposition and she did something that just warmed my heart.  In addition to welcoming Leanne's generous displays of affection, Leanne told Brenna, "I love you."  Guess what Brenna said: "I love you, too."  What a cool kid!

One of the funniest videos (in my humble opinion) from the weekend involved a conversation between Merryn and Brenna.  They were discussing Kindergarten and I suggested Merryn give advice to Brenna about Kindergarten...

Those of you who know and love our "Mother Hen" can appreciate how she has apparently been cautioned by teachers to reserve her advice and allow classmates to complete their own work, without assistance.  I can only imagine how difficult it can be for Merryn to sit back and allow others to blaze their own paths and make their own mistakes, without her helpful suggestions.  But it made me laugh.  HARD!  

Overall, it was a fantastic visit and a fabulous party to celebrate the world's BEST sister and aunt.  

Leanne, 40 looks good on you, Girlfriend!

Happy Seventh Birthday, Josie!

Seven years ago today, our dream came true when Josie entered the world.  She was tiny little nugget; so beautiful and yet so fragile.  Within a week, we joined her at her bedside in the NICU and we fell in love.

It's hard to believe that seven years have passed.  That sweet little bundle of blankets and cords is now a strong, sassy seven year-old.

 She continues to radiate charisma that draws in everyone around her.  She fills the world with so much love.

 Today, we celebrate seven years of our precious Josie JoJo. 

What a gift!

 

Happy Birthday, Josie.  We love you!

 

For Ms. Tickles...

Dear Ms. Tickles (Josie's nickname for her associate who always "stalks the blog" when Josie goes missing from school), 

Greetings from the infirmary located between Mom & Dad's nightstand and the wall.  Josie received a Strep diagnosis a couple of days ago.  Unfortunately, the situation declined.  In the wee hours of morning, I awoke to the unusual sound of Josie whimpering.  She had a temperature of 105.  I called the pediatrician on call and followed her instructions.  This morning, we went into the office to be examined.

One blood draw, chest x-ray, nebulizer treatment, and mucous sample later, we were able to bring Josie home with some stronger antibiotics designed to stave off pneumonia.  We have a nebulizer and a pulse oximeter at home so we can keep an eye on her.  We certainly don't want a repeat of last year (CLICK HERE).  

This afternoon has consisted of a big cuddle and movie fest on the sofa.  That is, until a spike in temperature and a lap full of vomit put a damper on our snuggle session.  After a lukewarm bath, some Pedialyte, more ibuprofen, antibiotic, and some fresh pajamas, Josie seems to have perked up.  

Josie will sleep in her special sick spot where Mom can pop up at a moment's notice within the night, and catch vomit in the barf bowl better than Willie Mays in his prime!  (Confession: I had to enlist in Travis' help to make this metaphor work).  Gotta go - Adele's "Hello" came on and Josie just can't help herself from belting.  I better have my bucket ready in case those high notes trigger an episode! 

We appreciate any and all prayers for Josie's continued improvement.  We certainly don't need a repeat of last year's hospital siesta.  We'll keep you posted.

(Inside joke alert: Somehow the "W" from this puzzle mysteriously went missing).

3:1:17 - Spread the Word to End the Word

Today is "Spread the word to end the R-Word" day.  When the word "retard" or "retarded" are used as slang for "stupid" or "dumb," an association is created between a person who is diagnosed with mental retardation (today, referred to as "intellectual disability") and being stupid.  Even if no harm is intended to the special needs population, using the "R-word" reinforces hurtful stereotypes that individuals with developmental delays are less valued members of humanity.  

The word stings.

That's why today, the special needs community comes together to ask you to take the pledge to show respect to everyone by removing the "r-word" from your vocabulary.  Ask your friends to do the same.  If you need some tools for how to initiate the conversation, click HERE.

Do it for Leanne.  Do it for Josie.  

Valentine's Day 2017: A Collection of Photos That Will Never Be Displayed In Our Home

Having lovely photos of these three girls dressed in coordinating, holiday-themed attire, is one of the most wonderful things about any given holiday around here.  Valentine's Day is the perfect opportunity to crank up the feminine and frilly quotient and celebrate the sisterly love.  So we rushed to get ready quickly that morning so that we would have a few moments to spare to capture the spirit of Valentine's Day with a sweet photo before it was time to head to school.

Um...I've seen photos of hard-core rappers on the covers of albums that exude more warmth and approachability than Josie is giving us in this photo.

 The warm embrace I envisioned turned into a head lock...

 The sisterly love is truly palpable, isn't it?

And like any toddler, Biddy demonstrates the patience and attention span of a fruit fly.  She bailed.

 It was time to take the girls to school so when Biddy and I returned home, we decided to try again with a backdrop.  Apparently my vision of an adorable Valentine's Day cherub clashed with Biddy's vision of a slick used car salesman...

 Once again, Biddy's interest in abandoning the toddler 'tude and coorperating equated to Donald Trump's interest in abandoning Twitter and keeping his mouth shut, and she was gone...After school, I picked up the girls all excited to give it one more try.  But as soon as they got in the car, I realized Eros had missed the mark and no one was in the mood for my Mamarazzi runaround.  That, and the perfectly coiffed princesses I sent to school that morning returned looking like ragamuffins.  Ketchup stains on one, avocado stains on the other, and don't even get me started on the status of the hair.  Vidal Sassoon just rolled over in his grave.  But I didn't come this far to give up!

"Come on, Josie!  Look alive!  Sit up straight!  Smile!!!!"

 "No, no, no!  Don't do that because you'll knock over the..."

(insert audible, frustrated sigh here) 

"Yeah, Lydia...

 ...tell me about it, Girlfriend.  Welcome to motherhood."

That pretty much sums it up!  We hope all of our readers had a terrific Valentine's Day filled with love and chocolate.  If not, follow my lead and pour yourself a generous glass of red wine!

Down Syndrome Blogs

I recently asked my friend, Deanna, fellow Down syndrome blogger from Everything and Nothing from Essex, if there is a whole new generation of Down syndrome bloggers who document their babies' journey as we have been doing for almost 7 years now.  She said that she believes that the new moms tend to utilize Instagram, Facebook, and other social media to share their stories these days.  

Maybe I'm behind the times sitting here typing away on a laptop on this ancient blog but I am kind of partial to it; besides, sometimes I get a little too wordy for an Instagram post.  And don't even get me started on Facebook.  That's just not my scene.  But I digress...I still receive emails from new parents who have stumbled upon our blog and most of them don't even address me by name because they don't know my name.  So today, I hope to rectify that by sharing a synopsis of our story and the evolution of this blog.  (Gee, I sound like a 5th grader giving a book report).

Hi, I'm Elizabeth.  The dark haired baby pictured in the photo above.  That adorable blond-haired girl in pigtails holding me is my big sister, Leanne.  Yes, she is my biological sister despite what it looks like.  And yes, she has Down syndrome.  This picture was taken *ahem* thirty-some-odd years ago.

What was it like growing up with a sister with Down syndrome?  I don't know.  Leanne was the only sibling I had, so she was "normal" to me.  When I grew up and moved away for college, I missed my sister a lot.  To help fill the void, I started seeking out opportunities to volunteer within the special needs community.  After all, this is "normal" to me.  This feels like home.  These are my people.

For most on the sibling experience, click HERE, HERE, HERE, and HERE.

In college, I met this total dreamboat named Travis.  Travis was the sweetest, kindest, most patient and gentle young man you'll ever meet.  He loved me and just as importantly, he loved Leanne.  She loved him, too.  We decided we better keep him around long-term so when he popped the question, I said "Yes!"  Four months later, we skipped college graduation (don't worry - they mailed us our diplomas) and we got hitched!  Leanne was my maid of honor (or "Best Woman" as she preferred to call it) because, I mean, who else?

The next 8 years were quite adventurous.  Travis' career had us living in 7 different cities within 6 different states.  When we ended up back in the Midwest, just 3 hours from my mom and Leanne, and it felt right to settle down and start a family.  I worked in financial development for a nonprofit doing grant writing, and I had been volunteering at this organization that provides care and programs for children with special needs.  That's where I fell in love with this chunky little baby boy with Down syndrome.  I came home and talked about him constantly.  I don't remember the exact moment where I declared that I wanted to adopt our own baby with Down syndrome, and Travis doesn't either, but the adoption journey became our next major adventure.

For more on adoption, click HERE, HERE, and HERE.

The 3 short months it took to complete our home study was as long as we had to wait for placement.  Enter Josie.  The most life-altering blessing that had ever been bestowed upon us.  But the real magic was seeing the immediate bond between Josie and Leanne.

To see some videos of Josie and Leanne's relationship, click HERE, HERE, and HERE, or check out the hashtag #JosieAndLeanneLoveFest

And this, my friends, is where Confessions of the Chromosomally Enhanced started.  From 2010 on, this blog is where we've documented our family's journey.  From growing up with a sibling with Down syndrome to Josie's health challenges to milestones...it's all here.  

Links: Open Heart Surgery, Chronic Lung Disease, G Tube, Getting Off the G Tube.

A friend was recently telling me that when you give birth to a baby with Down syndrome, the medical staff gives you a list of every possible challenge you can encounter along your Down syndrome journey.  Since adopting Josie, I gave birth to two typically developing kids and no one ever gave me a list of all of the challenges they may encounter.  Can you imagine?!  Your child may get cancer, they may be in a car accident, they may experience teen pregnancy, drug overdose...If every mother were handed a list like that, leaving the hospital with this newborn would be trepidatious instead of joyous.

That's where Down Syndrome blogs serve the simple purpose of showing glimpses into the daily lives of people who have a family member with Down syndrome.  As a Down syndrome blogger, I offer both the sibling (you have to check out Aunt Leanne's Top 5) and the parent perspective.  

And while I've documented the challenges that we have faced, I hope the overall tone of Confessions of the Chromosomally Enhanced paints a positive picture of life with Down syndrome.  Leanne is the single most influential person in my life and if you ask Josie, she'll tell you that she's my "dream come true."  She is!

We welcome feedback of any Down syndrome blogs that our readers recommend.  We welcome questions that you would like us to answer.  And if you just can't get enough of CCE, check us out on Instagram @CatfishWithKetchup.  Updates are more frequent there.

Thanks for reading!

Elizabeth