Monday, December 4, 2017

Curing Down Syndrome and Other Random Rumblings...

Hello Blogosphere Friends!  We've been meaning to check in with you for awhile now but you know how it  You get it.  

Four Random Rumblings
1.  Mr. Technology (A.K.A. Travis/Dad) got me a new laptop.  So nice, right?  And in an attempt to upgrade my photo editing game, he replaced my old photo editing software with Adobe Photoshop.  After spending the last HOUR spewing profanity, stomach in knots, near tears, I will leave you with two grainy images and a promise to learn more...with all my spare time.  Mmmm Hmmm...
2.  Adoption Awareness Month was November and I failed to acknowledge it.  Quite frankly, that is telling of how often adoption crosses my mind.  Yes, 1/3 of my children is adopted.  That adoption happened 7 years ago and on a day to day basis, I don't even think about it.  It's not a secret - everyone knows - even the kids.  Josie and Lydia don't really "get it" but it's discussed openly with Merryn in a very nonchalant way.  It goes something like this, "Yes, Josie is adopted.  It means she grew in another mom's belly and she came home with us."  She accepts that for now.  As she gets older, if she asks more questions, we will answer them honestly and nonchalantly.  But the bottom line is that Josie is our daughter.  She is Merryn & Lydia's sister.  And she fits in so seamlessly because families are created in many different ways but they're united by the same love.
3.  Thanksgiving at Mama Hop's house was wonderful.  She is a gifted hostess and nurturer.  Everyone had a lovely time.  Unfortunately, I got sick and that ended our visit early.  I would love to upload more photos from that visit but that's a TBD for now (see number 1 above).

4.  I have made a conscientious decision to avoid Facebook.  I know, I know...sing it's praises all you want.  You won't change my mind.  A consequence of this stance is that I'm often out of the loop (did I mention that I rarely turn the TV on either?).  Fortunately for me, I have some great friends who weed through the noise on Facebook and send me articles that are of interest to me.  This morning, I received a link to this article:

Cure for Down syndrome promised with just a single injection.

Deanna sure knows how to get me to blog.  Long time readers can probably guess my stance on this topic.  Heck, my life pretty much defines my stance on this topic.  These Chinese researchers are terribly misguided as they're pursuing a way to eliminate something that has bestowed the most abundant beauty upon my life.  Every day, I get to see Josie affect people in the most magical way.  Faces light up with joy, time slows down, and superficial concerns come to a halt as Josie gleefully dances with her shadow, sings whatever song is on her mind and generously doles out hugs.  

Josie's world contains no rat race, no insecurities, no comparisons, no materialism, and no facades.  Josie is 100% Josie at all times.  People are drawn to that.  People have a lot to learn from Josie.  I've been a student on Leanne's journey my whole life and I am still awestruck by how profound her impact is.  

I could go on and on but other responsibilities are calling.  If you'd like to read more of my perspective on this topic, there are 7 years of blog archives right here on Confessions of the Chromosomally Enhanced.  Thanks for tuning in.  Please bear with me as I figure out this Adobe Photoshop craziness.  We will return soon!

Monday, October 30, 2017

Life Is Better With You

October is Down Syndrome Awareness Month!  What a perfect occasion to delve into one of my favorite new campaigns, the #LifeIsBetterWithYou hashtag.   For those of you who aren't familiar with social media and its corresponding buzz words, we'll start at the very beginning: What is a hashtag?

  1. (on social media sites such as Twitter) a word or phrase preceded by a hash or pound sign (#) and used to identify messages on a specific topic.
    "spammers often broadcast tweets with popular hashtags even if the tweet has nothing to do with them"
    • the hash or pound sign (#).
      "Hunt mistook an @ for a hashtag while tweeting derogatory thoughts about him"

  2. I think of a hashtag as an online filing system.  For example, "We'll file this one under #WhyIHateMondays."  Then every time someone posts something to social media using that hashtag, it is all together in one file.  If you click on it, you see every post on that subject matter.

On to the topic at hand...In August, CBS News did a piece on how Down syndrome is close to being eradicated in Iceland.  You can read/watch it HERE.  Without getting religious/moral/political, the story just outlines how genetic testing and "heavy-handed genetic counseling" are steering women who are pregnant with babies with Down syndrome in Iceland towards a nearly 100% termination rate.
Enter the #LifeIsBetterWithYou hashtag.  The Down syndrome community has united under this hashtag to offer our experienced insight on the topic, and the conclusion is just that: life is better with Josie.  Life is better with Leanne.  If given a choice, we would chose life WITH them. 
As mentioned before, this campaign isn't about religion or politics.  It's not about being preachy or judgmental, it's about offering pregnant women honest input from people who have experienced Down syndrome first-hand.  
On Instagram, I post pictures like these and use the hashtag #LifeIsBetterWithyou.  What's going on in these photos?  Nothing much.  Just an ordinary family living a pretty ordinary life.  We read books at bedtime, go to school and to soccer games, we dine together as a family, we run errands...having a family member with Down syndrome doesn't bring everything to a screeching halt.  It doesn't make us social outcasts.  
But what about the fears?  What about the statistics?  The heart defects?  The learning delays?  
This blog has been going strong for seven years now and I've openly addressed Josie's heart surgery.  I've addressed how it has taken her longer to achieve her milestones and what we have done to support her in the process.  We're still living our ordinary family life.
But what about the suffering?  The burden?
No child should have to be sick nor suffer.  But each time that Josie has been hospitalized, she's been surrounded by other sick kids; the vast majority of whom do NOT have Down syndrome.  And with the modern medical resources available to us, Josie has managed to persevere through her medical challenges as quickly and as painlessly as possible.  On a day-to-day basis, she wakes up in the morning, eats breakfast, and goes to school, without an inkling of suffering.
As for the "burden," please reference this post, "And People Think Having a Kid with Down syndrome is Hard."  Here's a newsflash for everyone who has not yet experienced parenthood: having a kid is hard.  Period.  Any kid; extra chromosome notwithstanding.  Parenthood isn't for the weak or the selfish.  It will challenge every fiber of your being.  But it's totally, completely, 100% worth it.
Sure, they're cute when they're kids.  But they grow upThen what?
Adults with Down syndrome are even more fun!  Leanne is a strong, smart, kind, and funny woman who is a joy to be around.  She works, she takes care of herself, she has an active social life, and she helps around the house.  
But what about the siblings?  How will it impact them?

Leanne is the sweetest sister and the absolute best aunt to my children.  Leanne inspired us to adopt Josie.  Growing up, Down syndrome was present every single day: in the bedroom next to mine, at the dinner table, on family vacations...When I became an adult and embraced the idea of parenthood, I couldn't imagine that journey without Down syndrome.  Leanne enriched my life in so many ways and she continues to do so.  I learned so much from her.  She had a profound impact on me.  She made me a better person.  That's how Down syndrome impacts siblings.  That's why I know that Merryn and Lydia are blessed to have Josie as a sister.  
To Leanne and Josie, life is better with you!  Thank you for enriching our lives.

Wednesday, September 27, 2017

Summer at The Lake

Talk about a crazy, hectic, whirlwind of a summer.  Somewhere between Leanne's BIG 40 and Merryn's Fixer Upper Party, we got too busy living life to stop and blog about it.  Even the DSLR started to get cobwebs on it.  

For those who follow us on Instagram @CatfishWithKetchup, you saw almost-daily posts about Josie losing her first tooth, Lydia learning to overcome her separation anxiety at the expense of the poor Spanish Camp instructor's eardrums, therapy sessions, show choir performances, visits from family, swim spa arrival, deck building, corn shucking, and the infamous Desitin incident of 2017.  

But we would be remiss not to mention one particular highlight: our visit to the Tundra to see our soulmate family.  Oh how we miss them and when we reunite, all of us blend together seamlessly, and we continue to create memories to last a lifetime.  So here's a little slideshow we'd like to dedicate to our dear friends.  

Thank you for a magical 4th of July together!  We love you!

Stay tuned because with Lydia in part time preschool, there are a whopping 2 child-free, interruption-free, blissfully quiet hours every day that will hopefully be spent updating the blog more frequently.

Thursday, August 17, 2017

Merryn's Epic Fixer Upper Party: Part 2

After months of requesting a "Chip and Jo" birthday party, and after weeks of planning, Merryn's party day had finally arrived.  

The cuisine: Chips and JoJo's (sloppy joe's) compliments of Mama Hop.  The buffet decor perfection was compliments of our wonderful neighbor, Kyle, who threatened me not to move anything a single inch!

Party favors included a child-sized hammer and birdhouse to assemble.
The "photo booth" was a huge success featuring a backdrop re-purposed from my friend, Erin's, wedding and various Fixer Upper related props.

Of course all of the props in the world couldn't make a cluster of children gather together, face the same way, and smile simultaneously.  Hey, they're cute and sweet as can be, but they're not robots; especially not mine! 
Erin, kindergarten teacher and crafty genius, came up with a super fun project where the children covered a canvas with "shiplap" (or "Chiplap," if you will).  

Then, the kids applied a magnetic strip and spelled their names with magnetic alphabet letters.
The finished products were adorable and unique - just like the party guests.
That brings us to the cake; Merryn specifically requested a "Chip and Jo" rainbow ice cream cake with the plastic balloons on it.  I flipped through the book of children's birthday cake options at Dairy Queen and shockingly, I didn't find the page featuring cakes with popular HGTV personalities on them.  But the young lady behind the counter assured me that they would make it happen.
And boy did they deliver!  The cake was executed flawlessly and it tasted delicious.
Then it was time to reveal the big surprise.  If you read the last post, "Merryn's Epic Fixer Upper Party: Part 1," you're aware of the crippling anxiety that flooded my soul when Merryn requested a party theme that required creativity, craftiness, and several trips to Michael's.  But fortunately for me, we have lots of talented friends with innovative ideas on Instagram.  So I threw it out there and requested input.  What followed exceeded any fathomable expectation.  You see, one of our InstaFriends, Marianne, passed along our information to her friend, an executive producer for the show, "Fixer Upper."  The next day, I received the sweetest email in my inbox with this video attached and I squealed at the top of my lungs!  Travis quickly lowered the volume on my phone and suggested we save this as a surprise for Merryn.  And that's exactly what we did...
And as if that personal greeting wasn't enough, Chip and Joanna Gaines sent Merryn a whole box full of gifts from their Magnolia shop in Waco, TX.  What a sincerely kind-hearted and thoughtful couple Chip and Jo are.  And they clearly work with an equally benevolent team.  So from Marianne, to Michael, to Chip and Joanna, we'd like to extend our heartfelt gratitude for making Merryn's 6th birthday extra special!  Goodness knows, our precious, little Mother Hen deserves it. 
Merryn unwrapped many additional gifts that appealed to her unique and innovative interests.  
Then, it was time for us to reveal the product of six years of love, dedication, and blessings.  I ordered an enormous poster of Baby Merryn (is it me or was she absolutely delicious?!) and Travis and I stood on either side of it.  In true Chip & Jo fashion, I said, "Merryn, when we first met you, you were practically bald, you drooled a lot, and you pooped in your pants.  Six years later, you are mobile, wise, caring, compassionate, and completely potty trained; let's reveal the new Merryn!"  Travis and I then pushed the poster back to reveal six year-old Merryn.
At that point, it was time for the customary piñata.  Except, for the life of me, I couldn't find a piñata in the shape of a house.  So I appealed to my creative genius friend, Erin, and she walked us through the steps of making our own paper mache piñatas.  And just like on "Fixer Upper," we handed the kids a hammer and let them have "Demo Day." They gleefully whacked the daylights out of that beautiful piñata with Chip and Jo in the windows...

Perhaps the most creative and hilarious idea of all, came directly from Mama Hop.  She commissioned a local confectionery to create milk chocolate cockroaches for the party.  Who could forget the episode where Chip ate the cockroach?!  Brilliant, I tell you.  Absolutely priceless.
After the party, Merryn and her friends burned off all of the sugar they consumed in our swim spa.  The perfect ending to a wonderful party.
Special thanks to everyone who contributed innovative ideas, enthusiastic greetings, and birthday love to Merryn.  This was a birthday we'll never forget!

Monday, August 14, 2017

Merryn's Epic Fixer Upper Party: Part 1

Disclaimer: While this blog is typically devoted to the chromosomally enhanced members of our family, an exception must be made just this once.

It all started with a little note.  Merryn, bless her heart, left me a note and $5 of her own money, asking to go on a "Mom + Merryn" date for birthday party supplies.  
With it, she left a list of her desired supplies.  You see, Merryn has been talking about a "Fixer Upper" themed birthday party for months. 
 "Fixer Upper" is Merryn's favorite show.  We don't watch much tv around here but when we do, that's what she wants to watch.   Why would a five year-old be interested in an HGTV show about remodeling houses?  Heck if I know.  The kid is essentially a 40 year-old trapped in a 5 year-old's body.  She is an old soul; mature beyond her years, considerate, intelligent, kind and compassionate.  And even though I don't have a crafty bone in my body, and a trip through Michael's gives me major anxiety, I was committed to making this happen for her because she is so deserving.  

I posted these sweet notes to Instagram asking for suggestions on how to implement a "Fixer Upper" themed birthday party for a six year-old.  So many creative suggestions came pouring in along with one incredible surprise that will be revealed in Part II of this blog post.  

 So Travis and I collaborated on this funny little invitation...
Then Travis left town for his dream vacation of golfing for a week in Scotland with his dad and brother.  He left me some birdhouse kits that he'd purchased and asked if I was confident handling the rest of the party planning.  No, not really; but fortunately, I have some incredibly creative friends who led the way. 

Enter Erin - a truly talented kindergarten teacher.  She sat down with that birdhouse kit and quickly decided that there was no way a bunch of 5 year-olds would be able to manage this craft quickly and independently at a sugar-fueled birthday party.  But this savvy woman always has a plan...

We made a list and went to Michael's and she whizzed around grabbing things from various aisles while I breathed into a paper bag and repeatedly asked "Can we go home yet?" 

Let the party planning commence.  It's all hands on deck when it comes to throwing the ultimate "Chip & Jo" party.  First project: create a pinata using paper mache.  For a mess averse mom, this process required me to dig deep into my patience reserves.  
Thankfully, Cousin Abby was in town with YaYa and she rolled her sleeves up and dove right in.  Major thanks to Cousin Abby!
 Of course you can't have a "Fixer Upper" party without shiplap (or "Chiplap," as Merryn calls it).  Erin couldn't believe that I've never spray painted before.  
 Then of course we had to hot glue the paper mache pieces together to form a house shaped pinata in honor of "Demo Day"  This was one of many late nights that myself, Erin, and my wonderful neighbor, Kyle, spent party planning.
 Of course Merryn wanted to be involved as much as possible and she did a terrific job with her assigned tasks.
 Finally, it came down to the wire, and we had all of the elements we needed to carry out this awesome soiree.  Erin even raided her wedding decor for lanterns and mason jars and photo back drops to help create ambiance.  Kyle set up the decor, adding lighting, signs, and a gorgeous display of food.  Mama Hop spent the morning of the party cooking.
Like I said, it takes a village to host a fabulous event.  Thank goodness we had Mama Hop 
 ...and Aunt Leanne in town.  
Here's your chromosomally enhanced photo.  If you need more where that came from, check out our Instagram: CatfishWithKetchup

Tune in next time where we reveal all of the party pictures and videos including the one surprise that Merryn will remember for the rest of her life. 

Tuesday, July 11, 2017

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).