Friday, March 9, 2018

Aunt Leanne's Visit

We recently had the pleasure of hosting Aunt Leanne for an entire week while Mama Hop sought out some well deserved R&R in the Florida sun.  It was, perhaps, our best visit ever!  Every day mundane activities seemed to sparkle with Leanne's enthusiastic company.
As we've come to expect from her visits, hilarious memories were created by Leanne's unpredictability and candor.  Shortly after she arrived, Leanne told me she was thirsty.  I told her to help herself to whatever she could find in the fridge; there was plenty of bottled water, flavored water, it took me by surprise when Leanne found me and told me that she really liked that orange slushy that was in the fridge.  I said "Orange slushy?  What orange slushy?"
"Yeah, that says 'shandy'; I had a hard time saying that a healthy kind?"

I'd forgotten all about those orange shadys that I'd been hoarding since summer.  They come in a variety pack and orange is my favorite flavor.  My neighbors even saved their orange ones for me.  But I guess a sibling's fundamental purpose is to teach us how to share, right?

Oh but Leanne earned those Leinenkugels that she helped herself to by assisting me with many of my mom jobs throughout the week including getting kids dressed and off to school, tidying up toys, preparing meals, cleaning up messes after meals, wiping snotty noses, volunteering at school and church, etc...
There's a vindication in having someone else walk in your shoes and realize that even though you consider yourself a halfway responsible person who has her act together, makes plans, and sticks to schedules, when kids are brought into the mix, the best laid plans sometimes fall apart.  Take, for example, the morning Leanne tried to help Biddy make her bed.  In Leanne's eyes, it was an innocent gesture from a considerate aunt.  To to a headstrong three year-old in search of independence, it was a rage-inciting insult.  CLICK HERE if you missed it.
Oh but there were other parts of the day when Biddy and Leanne made the most cohesive team.  They read books together, played hide & seek, and even enjoyed a picnic in the park while the other kids were at school.

But it wasn't just the baby of the family who benefited from the company of a doting aunt.  There were many sweet moments that we've come to expect from Leanne and Josie.  These two have a bond that no one else can truly relate to. 

One morning after school drop off, Leanne turned to me and asked, "Are you jealous?"  I said, "Jealous?  Of what?"  She replied, "Of me and JoJo.  She loves me.  She loves to hug me!"  I said, "No, I'm not jealous of you and JoJo; I think it's great!"  She crinkled up her nose and angrily refuted, "Then why did you tell us to stop hugging this morning?"  I said, "Because she had to go to school, Leanne!"  Sheesh!  Someone has to break up the love fest every once in awhile or we'd never get anything done around here!  LOL!

Oh but it's amazing how productive we were.  The week was so busy, the time just flew by. 
Leanne accompanied us to Faith Formation at church.  We dropped the girls off in their respective classrooms and found our post where I serve as hall monitor every week.  And yes, it's just as hostile and intimidating as it sounds; there will be no noise, running, nor loitering in the hallways on my watch.  Jesus has authorized me with the authority to keep the church safe and orderly...
But on the rare occasion that there's downtime from the intense fury worthy of a "Law & Order: The Hall Monitor" spin off, or when I have an extra set of hands like Aunt Leanne, we may take on other work.  This past week, Leanne sharpened so many pencils for the special needs ministry coordinator, it will be Advent season before they have to reach for that pencil sharpener again.  And Leanne was so darn proud of her work!  It was truly a privilege for her to feel like she could make a purposeful contribution. 
  After lending her time and talents at church, Leanne was eager to do it again at Josie's school.  It happened to be Dr. Seuss week and the theme of the dress code that day was "Oh! The places you'll go!"  Josie was supposed to dress like what she wanted to be when she grows up.  She dressed like Aunt Leanne.
Leanne and I read "The Wocket in my Pocket" and afterward, the kids worked on rhyming the word "wocket" and creating their own Dr. Seuss inspired "wocket" creatures.  We had tons of fun with all of those curious and creative first graders!
And after a fast-paced week of taking care of kiddos and everything required to make the household function, Friday rolled around and Travis and I decided to take Leanne out to relax and unwind.  We dined at our favorite Mexican restaurant and then embarked upon one of Leanne's favorite past times: karaoke.

Some may recall a story I've shared about how Leanne got a karaoke machine as a child.  Every morning, before school, and every evening when she got home from school, Leanne would haul that karaoke machine out to the front porch, plug it in, and serenade the neighborhood from her potted-geranium-and-welcome-mat flanked "stage."  Her passion for this hobby was so intense that my parents had to impose restrictions about how early Leanne could start and when she needed to wrap it up for the night.

I was a little surprised to see how much Leanne has upgraded her show to include lots of confident hair tossing and some really, um, enthusiastic choreography:
I was expecting the old vaudeville stage hook to appear at any minute.  But no one seemed offended by Leanne's inclination to shake what her mama gave her.  

I don't know if Leanne wants me to share this part or not but she met another gentleman that night.  He also happened to have an extra chromosome.  He was all dressed up in a sweater vest and bow tie and he gave a finely tuned, albeit, more conservative performance.  Afterward, Leanne went up and complimented him on his performance.  I couldn't hear what was said from where I sat but I saw an enthusiastic hug.  Later, the gentleman came over and introduced himself to Travis and I and he told Leanne that she's pretty.  A smart guy knows a good thing when he sees it!  

Overall, it was a really incredible week.  It was so much fun that I asked Mama Hop for one more day with Leanne.  We needed a day to just relax, enjoy each other's company, and drink "orange slushies" while coloring.  
Aunt Leanne, please come back soon!  Stay as long as you want.  We absolutely loved having you here!

Saturday, February 3, 2018

A Life With Down Syndrome Is A Life Worth Living

Here at Confessions of the Chromosomally Enhanced (CCE), we like to keep the discussion honest, but positive.  There is plenty of negativity out there about Down syndrome and we certainly don't need to contribute to it.  As a subcategory of "mommy bloggers," complaining about one's children, expressing regret, or sharing private moments with the public are all areas of concern, regardless of the extra chromosome.  It's a line we must be very cognizant of, as our children will someday be able to read these words.

Fortunately for me, Down syndrome had such a positive impact on my life that keeping the discussion optimistic is not difficult.  As a parent of a young child with Down syndrome,  I know that my challenges are temporary because I see how my sister has grown into a kind, considerate, and mature adult.  
 That doesn't mean that I shy away from documenting the hard stuff, too.  I've discussed everything from Josie's open heart surgery, to her chronic lung disease, her G-tube and subsequent struggles to eat orally, right down to her behavior issues.  But the aforementioned issues are not universal to all kids with Down syndrome; those were just Josie's struggles.  And despite the fact that Josie has had significant health challenges, I would do it all over again, happily, because the joy she has brought to our family substantially overshadows the hard times.  Besides, as mothers, we are here to offer unconditional love.  Should any of my other children acquire a health issue or disability later in life, I would see them through it without hesitation.  
 This blog has addressed current issues pertaining to Down syndrome including how Chinese researchers are seeking a cure for Down syndrome and how Iceland is striving towards eradicating Down syndrome through prenatal detection and subsequent termination.

 So when an Instagram follower sent me a link to this video, I was immediately moved and inspired to share it (Thank you, Abigail S.).

(You can read his speech HERE).

Frank Stephens says, "I am a man with Down syndrome and my life is worth living."  In this speech in October 2017, Frank is testifying before congress, appealing for NIH funding for Down syndrome research.  He makes three powerful points: 

1.  People with Down syndrome are a medical gift to society because they hold the key that open doors regarding cancer research, Alzheimer's, and immune system disorders.
2.  A Harvard-based study has determined that people with Down syndrome and their families report significantly higher levels of happiness than the general public.
3.  Given the aforementioned points, people with Down syndrome can truly allow Americans an opportunity to carefully consider the role eugenics plays in our society, and how we choose which humans are worthy of a chance at life.

To read NPR's article "People With Down Syndrome Are Pioneers In Alzheimers Research," click HERE.

Did you know that abnormal protein deposits associated with Alzheimer's are found on the 21st chromosome?  

To parents who are learning this for the first time, don't fear.  The National Down Syndrome Society published an article that states:
Besides, with the research happening now, the Down syndrome population may lead to the discovery of a drug that will identify and prevent the development of Alzheimer's not only for people with Down syndrome, but for the public at large.

As Frank Stephens says, "I don't feel like I should have to justify my existence..." and he's right.  We are all created in God's image and every human being is worthy of basic human dignity.  The people with Down syndrome in my life have taught me more about love; how we are called to love and what it looks like to truly love unconditionally.  They have flooded my world with vibrancy and joy.  That's why it feels so good to be able to share them with you; it's an experience you should seize and absorb.

Leanne and Josie, life is truly better with you.

Monday, January 29, 2018

Christmas 2017: It's Cool to be Different

Greetings, Blog Followers!  Last night, after we got the kids in bed, I must have figured out the magic number of times to nag Mr. Technology (A.K.A. Travis/husband/dad) to get him to tackle this Photoshop mess with me, because he was suddenly moved to help me.  Maybe it was the added guilt trip about how he was leaving town the next day, and this is the only parting gift I wanted.  But since he insisted I embrace new technology, which resulted in endless frustration and blog negligence, I insisted he help me.  Here's what I learned about Adobe Photoshop: 

1.  It's not intuitive - this ain't no iphone, Folks.  It's not designed to just pick up and click around and have it figured out within moments.  
2.  Even technology experts get frustrated - granted, Travis' area of expertise has nothing to do with photo editing nor the arts in the general, but he "gets" computer function a whole lot better than I do.  He's been exposed to a whole lot more terminology than I have.  He can build a computer from scratch.  He can write code and program apps and do all sorts of fancy things.  Guess what: he still couldn't understand how to get that ridiculous watermark symbol to appear in Photoshop.  
3.  I'm not as helpless as I thought I was - Hey, I tried.  I did.  I watched the tutorials online, asked friends, and spent HOURS playing with the software.  I'm no computer expert but I suspect I'm above average at many programs.  I've got no problem researching techniques and troubleshooting issues.  And when I saw him do everything I had already done and still sit there like this...
You know what I see when I look at this photo?  Vindication.  Sweet vindication.  I'm right, you guys - it's hard!!!  Alas, we figured it out.  He did it, then he showed me how to do it.  I practiced doing it one more time.  And here you go...
Why does this matter so much to me?  Because I've had too many photos lifted from the blog and paired with a web article that I did not write; nor do I agree with.  And let me tell you, having your intellectual property taken and used to represent a viewpoint that you do not endorse is frustrating as H-E-double hockey stick.  

Granted, I realize that adding a watermark to my images won't necessarily stop future copyright infringement; but it makes me feel like I'm being proactive and completing my due diligence to deter it.  

While we're celebrating accomplishments, can we just take a moment to appreciate that it's still January (for a couple more days) and the Christmas photos are posted!  Woo Hoo! 
There was a time in my life when this would have happened within 48 hours of said photos being taken, but life has changed.  Its hectic.  So now, we celebrate one month.  
YaYa, Papa, Uncle Corey, Aunt Sarah, and Cousin Abby all joined us at our house to celebrate Christmas.  
And as crazy and stressful and busy the holiday season is, the magic of seeing these little faces light up makes it all worth it.
I wasn't planning on doing Christmas cards this year because between holiday decorating, holiday shopping, holiday parties, hosting Christmas, a husband who travels quite a bit, and the steady stream of illness that seems to invade the house during cold/flu season with three small children, the prospect of mailing out 60+ cards seemed like a less-than-sane task to add to the "to do" list.  But Merryn is quite the traditionalist and she was very upset with me when she heard about my bah-humbug stance on holiday cards.  So, she begged and pleaded and offered to do everything - write every card, address every envelope, update the address list.  And I caved.  Because Merryn loves her traditions and I love Merryn.
If you didn't get one, please don't be disappointed.  A six year-old handled the project.  If yours was addressed to the wrong person, once again, a six year-old handled the project.  If yours had food stains on it, a six year-old handled the project.  Consider it extra holiday cheer.
Random subject change but I'll try and tie it all back; bear with me.  I recently received a message from an Instagram follower and it was so sweet, I want to share it:

I've been following you for a long time now and I know I've told you before but you are an amazing mother and sister and an inspiration.  And you make it okay and even cool for people to be different and that is so awesome and keep inspiring people with your Insta(gram) because you are making people living with a disability (and I don't want this to come off as mean or ignorant) but making it okay.  Just showing people the everyday in and out struggles and success of life, it makes everything relatable.  Because we all have struggles and it shows us that we are all the same.  Just thought you should know you're doing an amazing job.
 The author of this comment moved me with her heartfelt words because sometimes I don't even realize this is happening.  Sometimes I forget how easy it is to get swept up in a world of conformity.  There is still some sort of white-picket-fence definition of what a family looks like - especially on social media - and when someone with a substantial "difference" enters a family, it can throw people.
I guess I've never been a part of what society would consider a "normal" family and even if that did exist, I wouldn't trade our crazy crew for the world.  Of course we're all different.  And of course that's "okay and even cool."  It's especially cool!  It's the diversity of the human condition that makes life so beautiful.  It's the differences we share that allow us all to teach one another and learning from others is life-affirming.  It's fun!
And for blog and Instagram followers who scroll through the pictures shown here, they're probably noticing how similar our photos are to those showing the holiday festivities at any house with any "normal" family in your neighborhood.  But if us just doing our thing, and sharing that helps society realize that it's "okay and even cool" to embrace differences, then we couldn't be more proud!
So from our different family to yours, Merry Christmas and have a terrific 2018!  We'll be back soon to tackle more fun topics, exchange ideas, and celebrate our cool differences.

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.