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Five Minutes Underwater

April 6, 2015, 4:54 pm
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I used to give my parents a lot of grief about how there are 8 million baby pictures of Leanne and about a half a dozen of me...and she's in all of them.
Can we just take a minute a marvel at that burnt orange, crushed velvet sofa?  Folks, there are times when furniture crosses the realm of pure function and it becomes art.  You're witnessing it, my friends.  It really should be preserved in a museum somewhere...
 
I was determined not to let that happen with my kids.  Hence, I started a separate blog devoted entirely to Merryn.  I wanted to fill it with all of her vital stats - you know - just in case she someday asks me what her head circumference was at her 9 month check-up (Above average.  WAY above average.  I have the C-Section scar to prove it.  You can thank your dad for that, Kiddo).  I was going to impart all this valuable wisdom upon her; a toolbox to help her navigate her teenage years that spans beyond Noxzema and whatever dreadful teen soap the CW is airing in the future. (Do they even make Noxzema anymore??  I'm totally dating myself.)
 
Merryn's blog was last updated on November 15, 2013!!!
 
And Lydia?  LOL!  Let's not even talk about the little circle of the world wide web devoted entirely to her.  Because it doesn't exist.  Heck, CCE barely exists.  You probably had to wipe a layer of dust off your screen after clicking on our URL so the text would be legible.
 
So, I apologize Mom and Dad.  I get it.  I totally get it.  It doesn't mean you love me any less.  You just got busy. 
The other day Travis came home from work and I told him that I had planned a trip to Costco for the family because we were in desperate need of a diapers and Pediasure and we could just feed the kids at the snack bar and spare the dinner mess.  I just needed one minute to upload some pictures off my camera and hang some clean laundry in the girls' closet. 
 
Within 5 minutes he was asking me "Are you ready?  How much longer?  We need to get going..."
 
"Can't you see that this place is a disaster and I still need to load the dishwasher, feed the baby, sort the mail, and unpack the 12M clothes before we can go?!"
 
Travis said "By the time you do all that, it will be the kids' bedtime.  Can't you just do that stuff when we get home?"
 
 "You know what?" I snapped, "Forget it!  You just go to Costco by yourself!  The list is on the counter!"
 
He looked a little startled and he lowered his voice and hesitantly asked "Are you sure you don't want to go?"
 
"Of course I want to go!" I bellowed, "All day, every day, I'm trapped in this tiny condo with an endless supply of domestic drudgery to tend to and all I want is to get out of the house even if it is just a trip to Costco to buy some stupid diapers!"
 
"So you DO want to go?"
 
"Didn't you hear what I just said?!  I can't possibly go!"
 
At this point, Travis sighed, hung his head and walked out of the room in defeat.  The sleep deprivation/PMS/stress bomb is one not even Travis can dismantle.

 

That's why when I friend sent me a link to an article (click HERE) about motherhood by Jen Hatmaker, it totally hit home with me.  I'll admit I didn't know who Jen Hatmaker was but apparently she's kind of a big deal.  I understand her popularity may have something to do with Facebook.  I wouldn't know.  I don't have a Facebook page.  I don't have time for Facebook.  I don't have time for TV.  Basically, I live under a rock.  I'm oblivious to a lot of current news, pop culture trends, and the like.  Why?  Well, Jen Hatmaker describes it well when she says:
 
The baby years are short, kind of like five minutes…underwater.
 
Yes!  That describes my life beautifully!  So much about this article resonates with me: Former perspicacious business professional with a college degree turned stay-at-home mom with three kids in four years and a compromised acuity?  Yep!  That's ME!

 

 
And every day feels kind of like Groundhog Day; prepare meals, change diapers, drive to preschool, load the dishwasher, unload the dishwasher, kiss boo boo's, pick up toys, do laundry and more of the same.

 

And even though my life is quite monotonous, it's not boring.  I don't even remember what it feels like to be bored!  I've got an endless supply of things to do.  And the majority of them are not remotely fun.

Travis and I reminisce "Remember before we had kids and we could do whatever we wanted?"  "Remember when the only person whose food you had to cut was your own?" "Remember when you slept past 7:00am?""Remember when the house was clean?  Always?"  Yeah, those were the days...
 
 
But what Ms. Hatmaker so poignantly points out in the article is that my monotonous days of motherhood are filled with moments that make life worth living.  Sure, Lydia is the clingiest baby who won't even let me go to the bathroom without clutching my leg...but at night when she buries her sleepy little head in my neck and I inhale that beautiful baby scent, I am so grateful to have her in my arms.  And that smile?  I melt!
  Sure, Merryn is a challenging, argumentative, strong-willed, and dramatic "threenager," but she tells me I'm her best friend (unless I won't let her have the iPad) and she is an invaluable helper when it comes to her sisters.  Every day that child says something that makes me laugh and she never ceases to amaze me with her intelligence and kindness. 
 
Then there's Josie - or "Sassafras" as her para calls her.  Oh that child can be stubborn and defiant and all of the physical help she requires makes my back feel twice its age.  But she is full of affection; she lives to give hugs.  And after each embrace she sweetly says "Thank you for the love."  Literally.  She says that.  To me.  I'm her mom!  She doesn't need to thank me for loving her; it's the most natural inclination in the world.  But she does.

 
Then Ms. Hatmaker goes on to talk about how these little sanity-stealing, free time-eroding, house-destroying munchkins grow up.  Quickly.
 
...and thank God that you got to parent this kid, that he was yours, that he walked into your arms at one and will walk out of them at eighteen, but my gosh…what a gift.
 
I would strongly encourage you to read this article.  But don't do it if you have someplace to go and you don't want to cry off your makeup.  Because it will yank on your heartstrings.  Don't say I didn't warn you.  And on the hardest of days, it will remind you that you're not alone and it's totally, definitely, undeniably, completely, 100% worth it.
 

* This post is dedicated to all of our blog and Instagram followers who have left comments and emailed me letting me know how you appreciate us sharing our story.  We're humbled by your support.  Thanks for following along on our journey. 

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For Jodi

April 17, 2015, 1:19 pm
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Exactly where I want to be

April 29, 2015, 2:27 pm
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Spring Photo Shoot

May 3, 2015, 5:17 pm
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Good Lord Almighty how can you guys be smiling when those creepy iridescent spheres are flying at us?!  HELP! 

Really, Mom?  We're doing this again?

Somebody save me from this torture! 

Mom, we've gone over this time and again.  The definition of insanity: doing the same thing over and over and expecting a different result.  Does that ring a bell?!

 If my eye rolling is this good now, imagine how impressive it will be when I'm a teenager!
 
It's about as much fun as watching grass grow.

No caption needed
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We Are Moving...Again!

May 7, 2015, 7:59 pm
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Last August we found ourselves relocating to another city and state as a result of Travis accepting another position within the company.  We have always wanted to live in this city and we are truly happy here.  And while our nomadic history has certainly taught us to never say never, we would love to stay here and "settle down," so to speak.  After an exhausting real estate search, we decided that building a home would be the best way to accommodate our unique family.  We broke ground in October and we have been eagerly watching the progress.  Finally, moving day/week is upon us! 
 
Back in August, I blogged about writing a Social Story™  for Josie to help her anticipate and understand our impending move.  Her adjustment to our new surroundings was remarkably smooth, and while I'm not sure that can be attributed to the Social Story I drafted, it couldn't have hurt.  So I decided to do it again for our move into our new home:
 
Photos of the exterior have been altered/obscured to protect our privacy as part of our internet safety measures. 

Merryn told Josie's speech therapist that our dog is not coming with us because she's not pictured on this page; minor oversight of a sleep deprived mother.  The dog will, indeed, be joining us.






This is the part of the book where Josie busts out her signature sass and echoes "Independently?  NO!"


Everybody now: "Independently?  NO!"
 
I apologize but it appears as though I failed to save the file properly so I lost a few pages.  No worries - I took photos of my hard copy to share.  My IT guru husband would be mortified!  Lets just keep this between us, Mmmmk?  Thanks!


 
A few pages were omitted because they contain photographs of a top secret surprise in the new house to be revealed soon!  No, it's not another BALL PIT, but there's still time to talk Travis into recreating that brilliant work of art!  The new surprise is pretty cool so stay tuned.  Talk to you soon, Friends!



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Happy Birthday Aunt Leanne!

June 4, 2015, 11:06 am
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Happy Birthday to the most kind, loving, considerate, clever, and hilarious aunt in the world.  Leanne, you provide laughter, joy, and inspiration to so many people just by being yourself.  We love you!
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The Big Move

June 7, 2015, 4:06 pm
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Greetings Everybody!  Don't you just hate it when you go to check a blog and it hasn't been updated in forever?!  And you wonder if said bloggers are still alive and what the heck they've been up to that has them MIA.  Well, don't give up on us just yet.  We have a good excuse: We moved! 
As if our day-to-day responsibilities with three children five and under aren't enough, we get to unpack, sort, purge, organize, and repeat.  And just when I think that I'm done with one room, Travis appears from the basement with yet another box he found! 
 Fortunately for us, we have had help!  YaYa and Papa (Travis' parents) came and helped with unpacking, organizing, and various other tasks as requested...like baby gate installation.  We can't underestimate the importance of that!
 Needless to say, there wasn't a lot of time for photography amidst the chaos of moving but I did manage to grab the all-important YaYa & Papa with their granddaughters photo:
As always, my children were cooperative little angels.  YaYa, go ahead and send us your chiropractor bill.  Given the amount of times per day that Josie performs this little stunt, we could probably keep a chiropractor in business full time.
The new house is coming together as quickly as it can, given our circumstances.  While we're not exactly ready to post a house tour (remind me in a few years or so, okay?), it's with enormous excitement that we post a couple of pictures of the most fun feature of the home:
 A little playhouse under the stairs!
I'm going to go ahead and speak audaciously on behalf of my gender when I say, this is every little girl's dream!  It took quite a bit of persuasion to convince Travis to get on board with this idea - he was adamant that the space under the stairs was for luggage storage.  Period.  But, he can only resist for so long.  He's substantially outnumbered, after all! 
Back to the moving process...As he tends to do, Travis embarked upon an international business trip the week after we moved in.  While this time was a little easier than last time because I am more familiar with the area and I have a little bit of help, said "help" all go to the same college where it happened to be finals week.  We've got great timing, right?  So while our beloved sitters were focusing on their scholarly endeavors, Mama Hop and Aunt Leanne benevolently stepped up to the plate.
 That mother and sister of mine (along with that Aleve PM my mom brought) managed to see to it that we made it through Travis' absence and got a little more unpacking accomplished.
 And in exchange for the hours of unpacking, laundry, and childcare they provided, I made sure Mama Hop and Aunt Leanne feasted on one of my famous "home cooked" Bertolli frozen diners:
 Just look at Aunt Leanne's enthusiastic fist pumping!  She is my favorite person in the world to feed because even if I microwave a Lean Cuisine for her, she tells me I'm "the best cook".  And I ignore the fact that she uses this line on everyone who prepares her a meal of any sort.  I just relish in the culinary compliment as they are rather infrequent in my world!
 Let's see...what else have we been up to this month?  Well, both girls wrapped up their first year of preschool.  Merryn is enrolled in a summer enrichment program at her preschool while Josie is enrolled in "the Summer of Indepedence" program (AKA "Mom's Boot Camp").  Goals for Josie primarily center around self-care skills and transitioning from needing physical assistance and verbal prompts to fully independent toileting, self-dressing, and general mobility (stairs, climbing into her chair, carseat, etc).  These goals are rather ambitious, however, we are bound and determined to make as much progress as possible.  Hell hath no fury like a determined mom with an aching back!  Josie is stubborn but I am committed to out-stubborning her.  In fact, that's one of my major goals in life.
We also managed to squeeze in a visit with Elmo and Ernie ...
 ...and celebrate one year of Baby Lydia! 
It seems like just yesterday that Baby Number 3 made her grand entrance, and yet so much has happened in the past year for our family.  And the beauty of Miss Lydia's sweet temperament is that she has handled the pandemonium of having three residences in one year with such gentle grace.  She has been a delightful addition to our crazy circus. 
Her special day consisted of a birthday banner colored by her sister, attending her sister's swimming lessons, enjoying a lunch of her favorite food: spaghetti, and a dinner at everyone's favorite place: The Olive Garden.  Of course she enjoyed gifts, her first taste of cake, and a FaceTime birthday serenade by Mama Hop and Aunt Leanne.
And that, my friends, is the month of May 2015 in a nutshell.  One of my goals as we get more and more settled in, is to blog more often so stay tuned and keep nagging me.  In the meantime, get loads of photos and brief daily updates on our Instagram account: @CatfishWithKetchup.
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Defining Perfection

June 9, 2015, 12:14 am
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My older sister, Leanne, has Down syndrome so there was never a day in my life that I lived outside of the Down syndrome community.  Down syndrome was as natural to me as breathing.  It was comfortable.  It was familiar.
 
There was never any process where I had to learn to accept Leanne and her diagnosis; she was a part of my family since the day I entered the world and as younger siblings tend to do, I thought my older sibling was the coolest person ever.
 
When I left home and went away to college, I truly missed my sister and the special needs community so I sought out employment and volunteer options that would allow me to remain involved with individuals with special needs. 
Being a part of the Down syndrome community was such a positive experience for me that when it came time to start a family of my own, adopting a baby with Down syndrome felt like the natural place to start.
Call me naïve, but it really wasn't until I re-entered the special needs community as a parent, that I realized how many people did not share my overwhelmingly positive impression of individuals with disabilities. 
 
It was hurtful to experience the negative attitudes that exist out there.  So many people still see individuals like my sister and daughter as flawed; like they somehow fall short of what constitutes an ideal human being.  It's as though society has this standard of perfection and Leanne and Josie don't meet it.

 
And it's really hard for me to accept this attitude.  I can't accept it.  I don't accept it.  Here's why: because I KNOW better!  Trust me, in this life, there are more questions than there are answers but this is one thing that I can speak of with 100% certainty: People with special needs are made in God's image, purposefully created exactly as He intended them to be.  And just like everyone else, people with special needs have strengths, weaknesses, and gifts to share with the world. 
 
My sister and my daughter are not genetic blunders.  They do not represent an unfulfilled promise of a perfect human being.  They are exactly who they were created to be and they deserve of acceptance and appreciation. 
 
Who determines what "perfection" is anyway?  What does perfect skin look like?  What is the ideal eye color and shape?  What should the perfect voice sound like?  What length, color, and texture comprise the perfect hair?  The answers to these questions are both subjective and insignificant.  And if you spend your time dwelling on these qualities, you're missing out on the truly important qualities that people have to offer.
 You know who could care less about superficial ideals of perfection?  Leanne.  With everyone she meets, she defaults to love and acceptance.  You drive a junky car?  She doesn't care.  Your clothes aren't designer?  She could care less.  You don't have a prestigious education and a glamorous career?  That doesn't make you the least bit inferior in her book. 
 
You use a wheelchair because your legs are paralyzed?  She might be curious as to why you're in a wheelchair.  She'll probably ask.  And when you respond, she will accept it and move on without pity or judgment.  If you need help, she'll be the first to jump up and help you.  Just like she'd help anyone.  Because she is a sincere, kind, and open-hearted person.
 
We all know what a ridiculously materialistic rat race this world can be.  That's why it's so refreshing to be able to get away from that nonsense and hang out with people who are genuine; people who are not afraid to be themselves. How wonderful would it be to walk into a room and know that everyone automatically defaults to accepting and appreciating you?
 
That's what it's like to grow up in the special needs community.  That's an opportunity that I'm thrilled to be able to offer to my daughters.  That's a view of the world I wish everyone could experience.  That's how I KNOW that Leanne and Josie are perfect just the way they are, and that life is better because they're in it.

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Leanne Dishes On Her Birthday Date

June 30, 2015, 1:02 pm
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Leanne recently celebrated a birthday by going out to dinner with the ever-so-handsome Mike (not to be confused with "cute" - he prefers to be referred to as "handsome" and he'll tell you so).  Loyal readers will remember Mike from this post (click HERE).  Here's a photo of the good looking couple outside of the restaurant:
My mom took Leanne out to dinner and she and Mike's mom dined at a separate table to let the couple have their privacy.  I haven't really had a chance to hear about the date directly from Leanne until last night.  And in true Leanne style, the emphasis was on the food, she didn't hesitate to share her thoughts on the wardrobe, and she even gave me the exclusive "don't-tell-mom" details (Mom, this video is off limits):


Thanks, Leanne.  We're so glad you enjoyed your date with that dreamboat of yours!

Stay tuned because I plan to draft a long post (or maybe several posts) about the National Down Syndrome Congress Convention in Phoenix, Arizona.  I just returned and I'm bursting with excitement, fun stories, and good information to share!
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Preparing for the National Down Synrome Convention 2015

July 8, 2015, 12:43 pm
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Every year, the National Down Syndrome Congress hosts a convention where people from all over the country came come to participate in workshops and get the latest information about Down syndrome.  Leading experts in the Down syndrome community give presentations on the how to address the health, educational, social, behavioral, therapeutic, and behavioral needs of individuals with Down syndrome.  This year, it was held in Phoenix, Arizona at the JW Marriott Desert Ridge.  As if the draw of the convention wasn't enough, the lure of the resort and the opportunity to see wonderful friends convinced Travis and I to make this our anniversary getaway. 
 
Fortunately for us, the world's best sister, who happens to also be the world's best aunt, cleared her schedule so she could take care of our kiddos (with a little help from Mama Hop).
 
Leanne's been at this aunt thing for several years now and she's well aware of how much work is involved.  She runs a tight ship!  Within an hour of arriving at our house, she came and found in the girls' closet where I was hanging clothes, and she read the document she'd drafted containing her babysitting "policies" and behavioral expectations.
Leanne and I discussed her compensation for successfully completing this babysitting gig as well as the prospective rewards that compliant children could earn:

With the promise of fun in the sun awaiting, coupled with an experienced and loving babysitter, it was time to get down to the logistics.  Us Type A, neurotic types can only truly relax and have fun once we've scrupulously checked every item off of our list.  I typed up instructions, schedules, emergency contacts, and even a map.  I set aside a laundry basket full of clean, coordinated outfits. 
Then I proceeded to pack for myself.  Since my day-to-day housewife attire falls somewhere between barely presentable and not half bad (if worn during the Clinton administration), I did a little shopping, stood on a chair in front of the bathroom mirror and texted some selfies to a trusted panel of friends.  Baby Lydia even got in on the action and the next thing you know, I temporarily suspended my membership to The Yoga Pants Society. 
Sadly, no amount of organization and planning could prepare me to say goodbye to the sweetest, cuddliest, happiest(as-long-as-mom-is-within-view) baby in the world.  Lydia may only be a year old but she knew something was going on and she turned the clinginess quotient up full blast. 
As heartbreaking as it was to leave my 3 babies, I knew it was an important opportunity to take a break, recharge my batteries, and nurture my marriage.  The girls were in excellent hands and I was off to indulge in a fun-filled weekend at a beautiful resort with my best friend.
 I've been dying to blog about the incredible experience that is the National Down Syndrome Congress Convention.  It was such a awesome weekend jam-packed with so much terrific information that it will undoubtedly require more than one post.  Your patience is appreciated as my parental duties and the subsequent exhaustion that accompanies my parental duties sometimes have a tendency to derail my best intentions to blog.  Can I get an "Amen" from all of my fellow mothers?  Solidarity, sisters.  Solidarity.
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Josie's Tonsillectomy - A Social Story

July 14, 2015, 2:04 pm
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While there is still a series of National Down Syndrome Convention posts planned, we interrupt that topic to address an important event that Josie will face this week: a tonsillectomy and adenoidectomy.  While these surgeries are relatively common in children, especially in children with Down syndrome, it is still a tough experience for a child.  Josie's past feeding difficulties resulting from her g-tube use (click HERE and HERE to read more), make this particular operation even more complicated and intimidating.  A successful recovery is contingent upon her willingness to eat and drink. 
 
As I've done with major life events in the past, I drafted a brief social story to help Josie prepare for the upcoming surgery.
 
I used Microsoft Publisher and incorporated a mixture of photos of Josie as well as generic photos I found on Google images.
 

 

Prepare to be amazed by my graphic design skills.  I know I will receive job offers right and left after the world gets a taste of my Microsoft Publisher "photoshopping": BOOM!
 

 

Wait for it, wait for it...BOOM, AGAIN!

Since food refusals are common in all children post-tonsillectomy, we are preparing ourselves for even more opposition from Josie, as eating is not her favorite pastime and she has a well-documented history of noncompliant mealtime behavior.
 

 
Therefore, this social story places great emphasis on the food consumption.  Josie's ENT said that in order for her to be discharged from the hospital, she has to eat and drink and that one of the most common problems that results from this surgery is dehydration.  We certainly don't want to have to be readmitted for IV fluids.
 
 
The next page employs the very valuable "First (non preferred activity), then (incentive)" statement that we learned in our years of behavioral therapy.  Josie
is very familiar with this idea so I spelled it out simply, with basic pictures because people with Down syndrome are very visual.  
 
We plan to take this booklet to the hospital with us to reiterate this idea after surgery.
While we anticipate some challenges initially after the surgery, we know that this type of surgery has the potential to bring a lot of health improvement to Josie.  She will have a sleep study in August to determine if she is still obstructing and experiencing lower oxygen saturations during sleep.

 
Here at CCE, we are big believers in the power of blogosphere prayers and we welcome and appreciate your prayers on Thursday. 
 
For more updates on Josie's progress, check our Instagram account:

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Prayer Request

July 15, 2015, 5:53 pm
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As our precious Josie JoJo prepares to undergo surgery tomorrow, we would love for you to join us in praying for a successful surgery and a speedy recovery. 
Thank you for your love and support!  We'll keep you posted. 

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Josie's Tonsillectomy: What We Learned

July 18, 2015, 1:19 pm
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In an attempt to encourage Miss Josie JoJo to take an afternoon snooze, I put her on Mom & Dad's bed and set up my laptop so I could keep her company while blogging.  We just returned home from the hospital yesterday afternoon after a successful tonsillectomy and adenoidectomy. 
 Because of Josie's complicated health history which includes open heart surgery to repair 2 VSD's, chronic lung disease, a G-tube placement and subsequent eating difficulties, what may potentially be an outpatient surgery for some kiddos was a hospital stay for Josie.  The biggest factor in determining when she could go home: demonstration of a willingness to eat and drink post-op.
 Josie is no stranger to the hospital scene and as a result, Travis and I, have learned a lot about advocating for our little patient.  Here are a few tips we can share:
 
1.  Research - Any surgery and hospital stay, no matter how minor, is stressful for both the parent and the child.  I have found that the more information I have going into it, the more comfortable I feel about things.  I searched web pages and YouTube videos about tonsillectomies.  I ordered a children's book about it.  I talked to friends whose children had done it before.  And I was glad I had because I knew what to expect to some degree.  For example, I had a wonderful friend call me the morning of Josie's surgery to warn me that sometimes kids thrash around as the anesthesia wears off and it can be really scary to watch but it's normal.  Boy was I glad she told me that:  Josie thrashed violently for 2 hours!  And it was awful to watch.  But it would have been much scarier had my friend not warned me it could happen. 
 
2.  All Patients Are Different - Just because two people have the same surgery, it doesn't mean they'll have the same recovery.  I talked to a lot of friends whose children had a Tonsillectomy and Adenoidectomy (T&A) prior to Josie's surgery.  Some children were miserable for weeks afterwards, refusing to eat, drink, or take medications; while others woke up ravenous, inhaled a plate of spaghetti, and bounced back like nothing ever happened.  Josie's recovery has been somewhere in between: She has been eating and drinking soft foods at our request and taking medications but you can tell she's not quite herself.  As long as we stay on top of her pain management schedule and administer her medications on time, she doesn't get too uncomfortable/cranky.
 3.  Ask Questions -Most of Josie's hospitalizations in her infancy took place in a teaching hospital that had a medical school affiliation.  It was great because there were tons of fellows, residents, and medical students learning, and the staff physicians were eager to teach and answer questions.  And as stated above, the more information you have, the more comfortable you are.  So ask the doctors what type of procedure is being performed.  Ask about the risks and side effects.  Physicians generally don't like "crystal ball" type questions - for example, my favorite question to ask when Josie was g-tube dependent was when she was going to be able to eat orally.  No one has those answers.  But I found that it helped me to phrase the question like "In your experience with kids her age with Down syndrome, what's the average time frame for a child to use the g-tube?  What variables affect a successful transition to oral feeds?"  If physicians use a word that you don't understand, ask!  If they're describing a condition/procedure you'd like to research further, have them tell you the official "diagnostic term" and write it down so you can Google it and read more about it later.  We've found that medical staff appreciate informed parents who are eager to learn all they can about their child's condition.
 4.  Speak Up! - Travis and I don't have medical degrees but we are the experts when it comes to our children.  I believe people who enter the medical profession do so because they genuinely want to help people.  However doctors, nurses, respiratory therapists, etc are human, too.  They are dealing with a lot of patients with various and complex issues and sometimes things fall through the cracks.  That's why, as parents, we must be vigilant and speak up when something doesn't seem right.  For example, yesterday, Josie was supposed to receive her pain medication at 11am.  By noon, Josie was started to get really irritable and I realized the nurse had never come in the room to give it to her.  So I went out in the hall and found her and requested it. 
 
Admittedly, assertiveness comes easily (sometimes a little too easily) to me.  I realize this isn't the case for everyone.  If you're weary of coming across demanding or disrespectful, perhaps phrasing your concern in the form of a question may help.  Say "This doesn't seem to be providing relief for my child; is there an alternative plan of action we can explore?"  Or "Do you have any suggestions for how we can help my child ____?"  Remind yourself that errors occur in the medical field just like in every other field and it has been proven that parents who advocate for their children receive better medical care. 
I'd like to take this time to thank some people whose support was invaluable to us:
 
1.  Mama Hop and Aunt Leanne - They are always there to help when we need an extra set of hands.  Because of them, Travis and I could both be with Josie at the hospital and know that our other kiddos back home were receiving tons of love, care, and delicious food! 
2.  Family & Friends - Stacey, Kristin, Deanna and everyone else who let me inundate them with questions and concerns regarding this surgery.  I am so very grateful for your guidance.  And to everyone who called and texted to check on our little JoJo, we truly appreciate your support and concern.
 3.  Blog Friends and InstaFriends - I am so proud to be a part of this fun and supportive social media community.  I truly believe that we have a valuable platform to share information, offer support, and change the way the world perceives Down syndrome.  Your kind words and prayers mean the world to us. 
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Parenting in the Information Age: Am I Oversharing?

August 13, 2015, 4:20 am
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I know I promised to write about the National Down Syndrome Conference and I have every intention to do so but a topic has surfaced in our special needs blog/social media community and I feel compelled to address it. 

In this life, many people have to search long and hard to find their calling.  However, I've never had any doubt about my calling: I know I was put on this earth to advocate for individuals with Down syndrome.  The blog and Instagram(click HERE) provide me with an incredible forum to do it simply by sharing our story.
Then, a fellow blogger and dear friend sent me a link to this article (CLICK HERE). 

I was forced to stop and question my involvement in the blogosphere/social media realm and reassess whether I'm doing the right thing; is it worth it?
 Carly Findlay, author of the article, is an adult living with a rare skin disorder called ichthyosis.  In her article, it talks about how it makes her uncomfortable when parents "overshare" about their child's disability via social media and the Internet.  She uses the example of when parents share embarrassing details of their child's condition and vent about the burdensome aspects of caring for this child.  She questions how that will make the child feel.  She wonders if she was a burden to her own parents.
 Ms. Findlay makes some very valid points; but I don't think her message is exclusive to people parenting a child with a disability.  Her message is relevant to all parenting in the Information Age.  Anything you share on the Internet may someday be accessed by your child.  Before posting, stop and consider how this will make your child feel.  Is this the type of innocent embarrassing story that all moms happily retell over and over about their children?  Will it be met with a groan or an eye roll from your child or is it something that will make your child question his or her worth as a human being?  Will it make your child feel less loved or wanted?
While Carly Findlay brings up some truly thought-provoking topics related to blogging and sharing personal information, it is my hope that special needs families will continue sharing their stories.  Here's why:

Prejudice is based in ignorance and an overall lack of exposure.  The only way to advance society's perception of individuals with special needs is to allow people to meet and learn about individuals with special needs.  Once the experience is there, comfort levels rise and negative stereotypes are replaced with a genuine appreciation for the individual and the gifts he/she possesses.
 The Internet, with all of its pitfalls, is an incredible tool to help disseminate information quickly.  You may not have had the good fortune to grow up next door to someone with Down syndrome but you can tune into this blog and gain a heartfelt appreciation for Leanne's kindness, humor, and capacity to love.  Your child may not have a classmate with Down syndrome but you can show him pictures and videos of Josie and he can gain an appreciation for her as a fellow 5 year-old who has strengths, weaknesses, perseverance, and lots of attitude. 

And a pregnant woman may be patrolling the internet after having just received a prenatal Down syndrome diagnosis.  She may wonder what impact the diagnosis will have on her other children; on her family.  Amidst the pages and pages of sterile, clinical information, she stumbles upon CCE.  And she sees a female who grew up with a sister with Down syndrome; a female who was so positively influenced by and grateful for that experience that she and her husband started their family by adopting a baby with Down syndrome.  And five years later, here they are - doing all of the things that other families do; living life and loving one another.
I know social media and the Internet can be a powerful forum to truly shape perceptions about individuals with special needs because I've received numerous comments and emails over the years that have reiterated this point over and over.  By simply living our lives and posting occasional photos and sharing our story, we can encourage new parents, unite a special needs community, and promote inclusion and acceptance by welcoming everyone to come discover that we really are "more alike than different."
I hate when I get too verbose but consider this one last point...
In the last two generations, parents of children with Down syndrome (and other special needs) secured the following advances for their children:

1.  Individuals with Down syndrome went from being institutionalized to being brought home and raised with their families
2.  Individuals with Down syndrome were given access to an education

I invite other special needs parents to join me in sharing your stories.  Let's join forces and advocate for our kids.  Let's educate everyone on how enriching life can be when we embrace the diversity of the human condition.  Let's do it compassionately and respectfully. 

And maybe someday I will "hand over the keys" of this blog to Josie and she can pick up where I left off; sharing her own story.  And I'll be proud of the content I contributed and the foundation I built.
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National Down Syndrome Congress Convention 2015

August 21, 2015, 2:01 am
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WARNING: This post contains an excessive amount of selfies of two chromosomally deprived individuals who fall dramatically short of the cuteness standards you've come to expect from CCE.  Please accept the following image as an apology and peace offering:
It's finally here: A post about our incredible weekend at the National Down Syndrome Congress Convention 2015!  What is the convention all about?  It's a fun-filled weekend at a luxurious resort where top experts in the field host seminars on topics related to Down syndrome.  There's something for everyone at the NDSCC because they have a customized experience whether you're a parent, a sibling, an adult sibling (yeah, this whole thing provided massive confusion for me and made me want to clone myself more than once), a parent of a child with a DS-ASD dual diagnosis, a self-advocate (individual with Down syndrome), and the kids (childcare and activities are included).

Workshops covered topics related to ALL ages including prenatal testing, feeding, communication skills, gross motor skills, fine motor skills, success in the classroom, IEP's, inclusion strategies, behavior, employment, dating and relationships, higher education, independent living, and MORE.  Seriously, Folks: Just glance through this Workshop Schedule (Click HERE) and you can see why I wanted to clone myself.  I wanted to attend all of them!
Travis and I touched down in Phoenix on a beautiful 115 degree summer day - Oh!  Don't worry, it's a dry heat (Mmmm Hmmmm...) - and the rental car agent handed Travis the keys to a Dodge Charger.  He slid across the hood, and lowered himself in through the window and we were off!

Just'a good ol' boys
Never meanin' no harm...

When we arrived at the JW Marriott Desert Ridge, I was blown away by what a beautiful resort it is.  My pathetic cell phone pictures don't do it justice; it was first class all the way!
Footloose and child-free, Travis and I got down to the business of vacation!  We set off to explore the resort - particularly the pool.  Let's face it, the pool is the only place you want to be on a 115 degree day.
In the evening, the NDSC had events and mixers planned - some were for parents, others for kids.  But even just hanging out in the hotel lobby provided a great opportunity to meet all sorts of wonderful members of the Down syndrome community.  The lobby was where I got to meet my Down syndrome sibling idol, Dr. Brian Skotko (I've blogged about his work HERE, HERE and HERE).  The sight of him got me truly starstruck.  After some encouragement from Travis, I walked up to his table and blurted out "I love you!" Yes, my nerves got the better of me and I led with a proclamation of love...to a total stranger...followed by an introduction to my husband.  It was all kinds of awkward.
It was also in the hotel lobby where Travis and I had the pleasure of striking up a conversation with this lovely lady, Global Down Syndrome Ambassador, DeOndraDixon.  You may recognize her from Jamie Foxx's "Blame It" video (Click HERE).  Jamie Foxx is a Down syndrome advocate as well, and he's DeOndra's brother.  In addition to having killer dance moves, DeOndra is smart, sassy, and downright hilarious!  She took a liking to Travis and complimented my taste in men.  Then she reassured me not to be threatened because she doesn't pursue married men.  Good to know, DeOndra.  Let me tell you, Folks, I could have hung out with her all night!  I hope our paths cross again.
And while I didn't actually get to meet him, the one and only Tim Harris was at the convention.  He gave a phenomenal speech - talk about a gift for public speaking and engaging a crowd.  You can read more about Tim HERE.

I met so many other incredible people - too many to reference individually - but one more stuck out in my head.  Her name was Mary Therese and she was a young lady with Down syndrome.  She came and sat across from where Travis and I were seated in the lobby while her Dad used the restroom so we struck up a friendly conversation with her.  She was poised, articulate, and just lovely.  When her dad returned, we introduced ourselves and he remarked how it's so nice to be in an environment where he could leave his daughter to strike up a conversation with strangers and not have to be the least bit concerned about it.  What a beautiful thing about our Down syndrome community gathering at the resort for the weekend.  He told us all about Mary Therese - from learning about her diagnosis to the changes he and his wife made to ensure that she had the best education possible - including purchasing a house in a different school district.  They fought for Mary Therese to be included in the mainstream classroom before that was common practice.  Every weekend they worked with Mary Therese on the curriculum for the upcoming week.  It was so inspiring to hear of a family so devoted with such faith in their daughter, disability notwithstanding.  Mary Therese reminded me of an older version of Josie - they seemed to share personality traits - and that made me smile.  We parted ways but all the way to dinner that night, I talked about Mary Therese and how wonderful it was to meet her.  She touched my heart.

Me with my wonderful friends Kristin and Michelle

It might sound strange but being in a resort with so many chromosomally enhanced individuals and the families and professionals that are so devoted to this community was my utopia.  If we could all just move into the JW Marriott and live together forever, it would be so joyous for me.  These are my people.  We're all members of the same club and it's a privilege for me.
I attended all sorts of awesome workshops and while it was difficult to pick a favorite, I would have to say that if I ever have the opportunity to see Dr. Dennis McGuire speak again, I'm going to jump on it.  Dr. McGuire specializes in adults with Down syndrome and he was so funny and absolutely spot-on in all of his points.  My favorite story that he told involved his wife running to the grocery store to get some food for a morning meeting she had at her office.  There was a young lady with Down syndrome bagging her groceries.  His wife was running late and she became a little impatient with the bagger's slower pace so she grabbed a few items from the belt and started shoving them in bags to try and help expedite the process.  The young lady with Down syndrome looked up with the most offended expression, stopped what she was doing, and said "YOU PEOPLE are always in such a rush!" with an exasperated sigh.  It was priceless because the bagger was right - ultimately, us chromosomally deprived people are the misguided ones - not the other way around.    And when you've been a part of the Down syndrome community as long as I have, it starts to make so much sense!
My other favorite aspect of the conference - and something I must completely commend the NDSC for - were the workshops focused on adult siblings.  To be in a room full of adults of all ages who are interested in the same topics was so incredible.  They even gave us an incredible "Adult Sibling Toolkit" packed with information about financial planning, adult transition, employment, mental health, and other important topics.

  I was part of a sharing session led by Embry Burrus, a speech and language pathology professor at Auburn University and an adult sibling of a big sister with Down syndrome. Ms. Burrus just lost her mother this year and her sister, Margaret, came to live with her.  The experience was so new and raw for Embry, but her honest insight into the adjustment was so inspiring.  I was  moved to tears.  After the sharing session, I went up to speak to her and to thank her for leading the session and for openly sharing her story, and she gave me a copy of her book,  Mama and Margaret.  It's a sweet and funny memoir detailing her and her sister, Margaret's, upbringing in a traditional Southern family.  Their mother was a strict, no-nonsense, "Steel Magnolia" who was a fierce advocate for Margaret in an era before resources were widely available to guide new parents of children with Down syndrome.  The book is filled with funny and heartwarming anecdotes.  If you're looking for a fun and touching read, check it out.  I hope someday Ms. Burrus will write another book about becoming Margaret's guardian and the adjustment that followed.
And of course I would be remiss not to mention the epic dance that is the highlight of the conference for all involved.  Growing up in the Down syndrome community, I've had the good fortune of attending a few similar dances in my day and I know the excitement they can generate.  Talk about a room full of uninhibited party animals, where no one is a stranger, and fun is the only goal.  It's an unforgettable experience.  Dance like nobody's watching, Folks. 
In case I haven't been clear, let me summarize with: 

The Top 4 Reasons Why All Members of the Down Syndrome Community Should Attend A NDSC Convention:
1.  Fellowship - Spend the weekend at a beautiful resort full of people who are rockin' an extra chromosome and those that love them.  Make friends.  Network.  Share stories.  Be inspired everywhere you turn.
2.  Learning - This is the place where the latest information and resources about Down syndrome are disseminated.  The leading experts in the field are here to give you all the knowledge you need to help your loved one with Down syndrome lead the most healthy and fulfilling life possible.
3.  Resources - A whole section of the hotel was converted to an exhibit hall where vendors distributed information and resources customized for people with Down syndrome.  Learn about organizations devoted to helping individuals with special needs, higher education opportunities, health and fitness gear, and academic materials and more - all in one spot!
4.  Fun - Some conferences are stuffy and boring that just drag on and on.  You know what I'm talking about - where you spend an exorbitant amount of energy strategizing how you can sleep while looking like you're thoroughly engrossed in the presenter's lecture?  This isn't like that AT ALL!  It's a fast-paced, dynamic, high-energy weekend.  It will wear you out in the best possible way - kind of like having kids.  And when it's all said and done, you reflect on that whirlwind and you think 'Boy!  That.  Was.  AWESOME!' and you start planning when you an attend your next NDSCC.
Let me conclude by thanking my wonderful husband, who knew how much this opportunity meant to me so he worked his magic at the last minute, after a hectic move into a new house, to get us to Phoenix.  I'd like to thank my dear friend (and Josie's future mother-in-law), Kristin, who persuaded her husband to join in the fun and be Travis' golf buddy all weekend.  Thanks to all of the awesome blog readers and Instagram followers who came up and introduced yourselves to me.  It was a joy to meet each of you.  And the biggest thanks goes to Mama Hop and Aunt Leanne (and Miss Lisa) for spending the weekend lovingly caring for our three babies.  I know it's no small feat and I'm so grateful.
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A Different Kind of Tears

August 27, 2015, 12:43 pm
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Last October, CCE featured a post about Josie's unexpected preschool enrollment and my subsequent emotional breakdown (CLICK HERE).  I cried so many tears over the thought of letting my baby go.  But that story had a happy ending.  Josie loved preschool.  Preschool loved Josie.  Every day Josie eagerly waddled her cute signature waddle (made even more clumsy by the cumbersome backpack that she wore) up the sidewalk and she confidently entered the doors of her school. Her face lit up as she greeted her classmates, their parents, the teachers, and aides.  But no one commanded a bigger smile than Mr. Don, the school custodian.  

Mr. Don unlocks the door and holds it open for the preschoolers to file into the building, slapping him five as they pass.  For whatever reason, Josie took a liking to Mr. Don, and this ritual became the highlight of her day.  As the year wore on, she would make a beeline straight for the door, press her nose to the glass and call out for Mr. Don until he arrived.  She would run to him and grab his hands and they would rock side to side in this little dance while Josie beamed as she stared at him and sang out "Mr. Doooooooonnnnnnn!!!!"

After having the summer off of preschool, we returned today, and as expected, Josie made a beeline for the door and called out for Mr. Don.  When he didn't arrive, she became impatient and to my surprise, she walked over to the office entrance, hit the wheelchair access button (Who knew she knew how to do this?!) stormed through the door as it automatically opened, and barged right up to the school secretary, Ms. Judy.  
 Ms. Judy is Mr. Don's wife.  She's told me that she and Mr. Don just adore Josie because she reminds them of their middle daughter who wore little pink glasses as a child.

Upon seeing Josie, Ms. Judy exclaimed "JOSIE!" and Josie cut her off and urgently said "Ms. Judy! You want Mr. Don!" (pronouns confuse Josie and she frequently says "you want" when she actually means "I want").  

Slightly mortified by her diva-like demands, I tried to calmly coax Josie back out to the foyer where she was supposed to be waiting patiently.  That's when I heard Ms. Judy radio "Mr. Don, please report to my office.  You have a very special visitor"

And with that, Mr. Don magically appeared.
Josie's face lit up and she ran to him - well, Josie doesn't run but she shuffled over there as quickly as she could...

 ...I was seeing it all in slow motion; it was like a movie scene.  He put his hand up to the glass.  She put her hand on top of his...
 That's when my tears started flowing.  But they were a different kind of tears than I experienced last year.  They were the moved-from-the-bottom-of-my-heart tears.  They were tears of profound gratitude that I was delivering my baby back to this environment where she is loved and cherished by the most kind community of people who appreciate Josie for all that she is.  They treat her like they're lucky to have her there.
 Mr. Don and Josie did their signature dance and I ushered Josie back out to the foyer upon realizing I'd left baby Lydia in the stroller unattended.

That's when more teachers and aides came pouring through the doors eagerly greeting Josie with smiles and hugs.
 "Ms. Carrie-elle!" Josie exclaimed at the sight of "Ms. Carol," whose name Josie never learned to pronounce correctly.  Ms. Carol beamed and said "I haven't been called that in months!  I missed it!" as she bent down to give Josie a hug.
More happy tears washed down my face as I turned and headed out the door, so grateful to be leaving my daughter in the loving hands of these wonderful people.

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Did I mention we had a third baby...a year ago?

September 21, 2015, 11:13 pm
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Awhile back, a well-meaning blog reader emailed me to inform me that my "About Us" and "FAQ's" were in need of an update.  And she was right.  These pages were sadly outdated.  We're talking years behind.  Merryn was a baby and Lydia, well, Lydia didn't exist. Whatsoever.  I believe the sender of said email had good intentions and she just wanted to bring this issue to my attention and help me out.  

What was my response to the email?  I laughed.  And then I forwarded it to a friend and fellow blogger with 3 kids close in age to mine so she could share in the unintended punchline.  You see, it's not that I don't care about this blog or that I'm tired of it.  I am still very passionate about and committed to CCE.  It's just that I have 3 children.  And the most self-sufficient one just turned four.  And while Merryn/Mother Hen is extremely helpful, she's busy.  I did "A Day in the Life" profile of Merryn on Instagram today and several followers commented on how exhausted they were just reading it.  And she only accounts for one third of my daily responsibilities.  

The thing about being a mom is, some days are like this:
 Flying high, warm sun, cool breeze, big smiles, and enjoyable moments.

Other days, motherhood is more like this:
 I give up!  I can't do this anymore!  You guys are driving me crazy!  I need a drink!!!!!

But most of the time, my day-to-day mom life looks something like this, except my ride isn't as flashy and I always have 3 small children in tow:
Go, Go, Go!  Fast, Fast, Fast!  Get in the car!  Where are your shoes?  Do you have to go potty? Lydia, why do you always poop the minute we're walking out the door?!  Oh wait - I need to put some clothes in the wash.  Don't let me forget to empty the dishwasher.  Oh, and we need milk!  I need to stop for milk...and what else was it that we really needed?  Oh my goodness I can't remember but I'm low on gas and I really need to get this car to the car wash.  And the stroller tires need to be inflated.  Wait - is today Physical Therapy or is that Thursday?  When is the window treatment guy coming?  Lillian desperately needs to go to the groomer; remind me to call.  Where was that form I was supposed to mail?  We need to get a present for that birthday party on Saturday...etc...etc...etc...

Back to that email I received...I started to update the "About Us" tab more than a month ago.  And if you click on it now, you'll realize it's not exactly a reflection of a month's worth of work.  It's a reflection of an impetuous effort completed in a series of 2 minute increments, interrupted by the clamorous demands of 3 little ones and impeded by the subsequent exhaustion that follows.  But, at least Lydia exists now!

One of these days/months/years I'll get around to fixing it.  But for now, I'm experiencing my "Five Minutes Underwater," and I'm genuinely trying to enjoy it.

And because memory storage is A LOT faster and easier on Instagram, you'll find us much more active over there.

  And I do plan on updating the FAQ's one of these days (That means "Frequently Asked Questions," Mom) so if you have a question or if you notice a gap in the information we've provided, leave us a comment or email us at CatfishWithKetchup@gmail.com!

P.S.  If the blog looks distorted on your screen, it's because I was messing with it at 1am after Mr. Technology was fast asleep...I really have no business messing with the margins at all.  Insomnia will make you do things you shouldn't be doing.  Let me know and I'll nag him to fix it ;-) 
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October is Down Syndrome Awareness Month

October 1, 2015, 5:54 pm
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October is Down Syndrome Awareness Month.  It's an opportunity to promote acceptance, appreciation and inclusion for individuals with Down syndrome.  This month we celebrate Josie, Aunt Leanne, and all of our other chromosomally enhanced friends.  You make the world a better place!  

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Why This Weekend is Going to Rock

October 4, 2015, 8:19 pm
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I wanted to blog tonight.  I had the time, I had the solitude (yaaaay for little ones sleeping peacefully), and I even had a list of topics that I want to address.  But fatigue discouraged me from delving into anything that requires too much brainpower.  

As I was browsing through "Aunt Leanne's Top 5," seeking inspiration, it dawned on me: I don't need to write a blog post.  The blog writes itself when Aunt Leanne is around.  And Aunt Leanne will be here THIS WEEKEND! (And I bet she's bringing #ThePurpleRobe).
 Hooray!!!!  I'm pretty sure that just got me off the hook for slacking in the blogging department.  My big sister is coming to celebrate my birthday (and her "brother's" birthday as well).  We could ask for no better gift!  Get ready to party!  

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Josie &"Sweets"

October 8, 2015, 5:59 pm
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Josie attends preschool in an inclusive environment; the majority of the class consists of typically developing peers and there are a couple of children with special needs.  The kids who need additional assistance, like Josie, are assigned an aide or paraprofessional (para).  

Josie lucked out this year and she got the same aide that she had last year.  She's a beautiful, soft-spoken, and maternal woman named "Ms. Lisa." Ms. Lisa has a soothing and graceful demeanor that evades me.  She emits such a tranquil vibe that I wish I had a "Ms. Lisa." She's cool, calm, and collected in the face of preschooler chaos.  More importantly, she's unflappable in the face of Josie's obstinacy.
Josie adores Ms. Lisa.  She cherishes their relationship so much, that she refuses to adhere to the appellation, "Ms. Lisa." No, "Ms. Lisa" just doesn't do it justice.  Instead, Josie has assigned the moniker "Sweets" to her beloved aide.

Where did "Sweets" come from and why does Josie insist on calling Ms. Lisa that?  Heck if I know.  But she refuses to be dissuaded from this nickname.  It reminds me a lot of when Leanne decided Josie would hereby be known as "Catfish with Ketchup." Travis and I pleaded for a cuter, more feminine nickname, but Leanne would have none of that.  The name stuck.

However, feeling like Josie should show more respect to teachers and other school staff members, I've been encouraging Josie to adopt "Ms. Lisa" as a more appropriate title for her aide.  After all, Travis can't go to work and randomly call his colleagues "Toots" or "Sugar." Did you call your high school English teacher "Doll Face"?  I didn't think so.
It's not as though "Sweets" is incredibly off base.  You'd likely be hard-pressed to find anyone to refute the allegation that Ms. Lisa is, indeed, very sweet.  But what happens someday when the foremost adjective used to describe Josie's staff members isn't "sweet"?  We can't have her going around calling people "Cranky Broad".  
Ah, but for now I'm afraid I'm fighting a losing battle.  And the "Sweets" term of endearment - well, it's just that.  And "Sweets" told me that she doesn't mind.  It's kind of their thing.  So here's to you, Sweets.  Thanks for putting up with our sassy little Catfish.
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