Settling In

We are really enjoying having Mama Hop and Aunt Leanne here for an extended (but not nearly long enough visit).  It has been so fun, exciting, helpful, natural, delicious, and joyous having them around.  Did I mention that we're loving it?! 

 Aunt Leanne is quite pleased with her new bedroom at the condo.  Girlfriend has her own daybed, desk, and flat screen TV, complete with the Disney Channel!  Nothing but the best for the original Diva!  

The girls are making themselves right at home at the condo.  They've got plenty of toys to keep them busy, not to mention the outpouring of attention from their oh-so-entertaining, retired elementary school teacher/grandma, Mama Hop and doting Super Aunt Extraordinaire, Leanne.

 Doesn't Mama Hop look natural in that kitchen?  Couldn't you just see her hosting her own show on The Food Network from right there in that spot?  She truly is a gifted cook - she can make ANYTHING without a recipe.  Seriously.  She's just got a natural inclination and a culinary instinct that would put Wolfgang Puck to shame. 

 If you need proof, here it is.  Josephine Leanne eagerly inhaling a bowl of "Mama Hop's Soup" - chicken, rice, zucchini, carrots and all - without so much as a verbal prompt.  If you knew what sort of hoops we usually have to jump through to get this kid to eat, not to mention the hours upon hours of feeding therapy with SLP's, OT's, and behavioral psychologists weighing in on every nuance of her refusals...Ugh!  It's truly incredible.  That's how GOOD Mama Hop is. 

Hurricane Merryn (aka "Thelma") may be even happier than the rest of us put together with the new arrangement.  During the last week, instead of getting dragged to Josie's medical appointments and having to sit through boring therapy sessions, she's been able to spend extra one-on-one time with Mama Hop and Aunt Leanne, soaking up all of the fun, attention, and delicious cuisine.  Meanwhile, Mom has been able to get even more done around the house!  So on behalf of Merryn, we're begging, "Mama Hop and Aunt Leanne, please stay!" 

 

Yes, this visit will be a shorter one.  But come Thanksgiving they will be here longer.  And come Winter, well, we're working on an even longer stay.  Feel free to leave comments and help us petition Mama Hop and Aunt Leanne to grace us with their presence more often.  It's absolutely wonderful having them around.

 

Did I mention that we're loving it?!

 

P.S.  A formal photo tour of the condo is coming for those who have been requesting it.  Stay tuned!   

They're back!

Mama Hop and Aunt Leanne are back for a much anticipated visit and we're so happy to have them here. 

 The condo is finished (hallelujah!) and they're getting settled. 

 Mama Hop jumped right in and started doing her "grandma" thing. 

 And Aunt Leanne picked up right where she left off doing her "Aunt" thing.

And if you're an Aunt Leanne fan (who isn't?!), stay tuned because we already have some pretty fantastic video clips we'd like to share, and we will continue to attempt to capture even more of Aunt Leanne's charisma, humor, and wisdom on film.  

And the Liebster Award goes to...

 

Guess what!  CCE has won an award!  The Liebster Award is given by bloggers to other bloggers as a way to recognize one another's contributions to the blogosphere.  Cool, huh?  This prestigious honor just happened to come from Patti over at A Perfect Lily:

Well, Patti...I just don't know what to say!  I'd like to thank The Academy...no, wait - wrong awards.  I'd like to thank Patti and all of our loyal readers for their support and encouragement.  It is a privilege to be a part of this beautiful Down syndrome blogging community.

Now, in order to receive my shiny trophy, I must first answer a few questions as designated by Patti.  (There will be a shiny trophy delivered to our doorstep, right Patti?!)

I'm starting to wonder if this Liebster is more of a prank than an award judging by these questions.  Patti is obviously trying to embarrass me.  But here goes:

 

1. What's the last great book you read

HaHaHaHaHaHaHaHa!!!!  You're joking, right?  I have two toddlers and I'm supposed to be sitting around reading insightful novels?!  I'm doing something wrong then.  I guess the honest answer is "Twelve Hours Sleep by Twelve Weeks" by Suzy Giordano.  I swear by this book as do all the mothers who recommended it to me before I had Merryn.  It's now my "go to" baby gift for expectant mothers.

As far as non-baby manuals, I love the book "Freakonomics: A rogue economist explores the hidden side of everything" by Steven D. Levitt and Stephen J. Dubner. 

 

2. Who would you most love to meet from blogland

It's too hard to pick just one!  Our dream meeting already happened twice when we got to meet the Super Squib Sibling Duo, Jace and LC from Pudge and Biggie.  Of course we would love to meet all of the adorable little chromosomally enhanced friends from blogland but I can't possibly start naming them because I will undoubtedly forget someone.  So here are my two wild card answers: 

(1) Mike, the brother of the one and only Pioneer Woman.  Yes, Pioneer Woman has a brother with developmental delays and if you've never read the Mike stories, then you better get started because they're priceless.  Be sure and check out the one about Mike and the rodeo.   Click here!

(2) Daniel Drinker.  Daniel is a young man with Down syndrome and his blog is one I discovered when I was in labor with Merryn (it was a LONG night) but I've never been so entertained by a blog.  It's written by his younger brother, Will, and the stories are so honest and FUNNY.  I'm also absolutely in love with the whole sweet family!  Will took it one step further and made a documentary about Daniel's life.  Do yourself a favor and watch it - you'll thank me, I promise: Click HERE

 

3. What's your favorite go-to recipe for company 

Once again, Patti - you're cracking me up.  Did I mention I have two toddlers?!  It's not really conducive to dinner parties.  Unless Josie's therapists count, we don't have company (and I don't feed the therapists).  Admittedly, I've never been much of a cook so I'll have to defer to Mama Hop for advice on this one because she is the cook in the family.

 

4. What's your favorite blog post that you've written

I like the post entitled "Living with Down syndrome" so much that I linked a tab to it at the top.  It's not really about my thoughts or insights; it highlights a survey of individuals with Down syndrome and their families giving their opinions about what it's like to live with Down syndrome. 

 

5. How many blogs do you read a week? Name a few..

I don't have time to catch up on blogs as much as I would like but some of my favorites include (but are not limited to): A Perfect Lily, Pudge and Biggie, Everything and Nothing from Essex, Channon Chronicles, Blessed by Brenna, My Stubborn Little Miss, Surprising Sweetness...I'm sure there's more I'm forgetting - forgive me! 

 

6. What do you hope people take away from your blog?

I get a lot of feedback from parents of young children with Down syndrome and they are filled with uncertainty and concerns.  I hope people read about our family and have hope that it's going to be okay.  It's going to be better than okay!  Down syndrome has been a part of my life since the day I was born and I am SO grateful for my big sister and the influence that she has had on me.  I would hope that if a pregnant woman just received a prenatal diagnosis of Down syndrome and stumbled upon our blog that she would reconsider the decision to terminate. 

 

 

7. What's your favorite ice cream flavor 

I'm not a huge ice cream person but I'd say cake batter...

 

8. If today was your last day alive, what five things would you make sure to do

1.  Take my kids to the splash park

2.  Go sing karaoke with Leanne

3.  Go to a concert with Travis

4.  Go to a winery with my mom

5.  Have a long talk with Jesus

 

9. What bugs you about other people's blogs 

I'm concerned with parents using blogs as a forum to vent about hardships related to raising children without realizing that someday those children will be able to read that negativity.  How will those words make them feel?  How will it impact the child's self esteem?  Will the child feel like a burden?  I'm all for being honest, but I believe words should be chosen carefully, and with regard for the fact that there is a strong likelihood that your child will access them in the future.

 

10. Do you actually read my blog, or just skim it for the pictures? I really want to know.

Patti, I honestly read it.  You have wonderful insights on life, faith, and parenting. 

And without further ado, I hereby nominate:

Loving Our Life

because this family has an AWESOME story to share about how their daughter with Down syndrome inspired them to fly to an orphanage in Eastern Europe and adopt another little girl with Down syndrome.  Christy, you need to blog more frequently, girl!

 

Here are your questions:

1.  What was the first concert you ever attended?

2.  Name a few of your favorite blogs and/or websites.

3.  Tell us your most embarrassing moment during motherhood.

4.  What is one message you wish you could share with the world about Down syndrome?

5.  Share your favorite tip for keeping your kids occupied so you can get something done (please, I really need tips!).

6.  What cancelled tv show do you with would return to television?

7.  What CD is in your car stereo right now? 

8.  What has surprised you the most since joining the world of Down syndrome?

9.  What is your dream vacation destination?

10.  In your eyes, what defines success as a parent?

Bubbles in Bulk

Who in the world needs a container of bubbles this big?

 

We do.

↑

On the plus side, our front steps are clean enough to eat off of!

Free educational materials about Down syndrome

Who doesn't like free stuff?!  That's why I'm sharing the love.  The National Down Syndrome Society (NDSS) offers free informational publications and DVD's about Down syndrome and the various stages of development on it's website. 

 

To check it out, click here

 

P.S.  Only one week until Mama Hop and Aunt Leanne arrive!  Woo Hoo!!!!!

 

Addressing the issue of childhood cruelty in the special needs community

The other day, a friend mentioned that having a child with special needs would always be accompanied by the concern that the child would be made fun of by the other children.  In this day and age of bullying, I would refute that such concerns are not exclusive to parents of children with special needs.  We all know what it feels like to be teased, taunted, and ostracized socially.  To some degree, this is a truly unfortunate "rite of passage" that is associated with growing up. 

 

My heart aches to think that either of my children would be subjected to cruelty from her peers.  However, I'm not naïve enough to think that I can fully protect them from it. 

 

Leanne was made fun of growing up.  She has been called a "retard".  She has been discriminated against and ostracized.

 Admirably, Leanne has exhibited more grace in those scenarios than most people would.  She has a remarkable ability to forgive and move on.  And the most beautiful thing about Leanne is, that she would never do that to another human being.  She is the least judgmental person I've ever met.  Perhaps witnessing the poise and tranquility Leanne exhibited in such situations has provided me reassurance as it pertains to my own children.

 

Another great source of reassurance for me is that things are different now than when Leanne was growing up.  Thirty years ago, people with developmental disabilities were clustered together in a special education classroom in a separate part of the school (or in some cases, in entirely different schools) than their typically developing peers.

 Today, individuals with special needs are integrated into the same classroom setting with their typically developing peers.  There is a huge push towards inclusion and mainstreaming.  As a result of these efforts, typically developing children are getting to know their peers with special needs.  Consequently, the fear and prejudice that result from ignorance and an overall lack of exposure is being replaced with an attitude of acceptance and an appreciation for the value that each individual brings to the environment. 

 It is my hope that instead of people saying "I don't know anything about Down syndrome because I've never really been around anyone with Down syndrome," they will instead say, "I grew up with a friend with Down syndrome named Josie, and she was pretty cool!"  I believe the impact of this could be huge.

In addition to the inclusion movement in an educational setting, today, acceptance of the special needs community is promoted by numerous non-profit organizations, news stories, popular music, and even blogs!

My mom and I were discussing how when we're out in public with Leanne and Josie, the overall reception is one of warmth and kindness.  If people ever stare at us, I honestly do not notice; but I do notice how people smile and greet my sister and my daughter.  (I also notice all the free swag Leanne scores because she's so darn cute and charming!)   

I've always felt like if people had a chance to really get to know my sister or my daughter, that any negative bias about Down syndrome would be replaced by a sincere appreciation for the character traits that make them such wonderful people.  The good news is that this is the direction we are moving in. 

Let's not forget that as parents, we can facilitate this process by the attitude that we project and the example that we set for our children. (More on this later...)

Honest insights on growing up with a sibling who is "different": Part 2

What critical health issues has Josie faced?

 

Having a sibling with a disability, were you concerned about how your daughter's disability would impact her sibling?

 

What are your hopes for your girls going forward?

 Answers to these questions and more can be found on part 2 of the guest blog post I wrote for the blog, Blessed by Brenna.

You can read it by clicking HERE.

Honest insights on growing up with a sibling who is "different"

 

What was it like growing up with Leanne?

 

How did negative reactions from others affect you?

 

How did your husband respond when you approached him with the idea of adopting a baby with Down syndrome?

 

 

Answers to these questions and more can be found in a guest blog post I wrote for the blog, Blessed by Brenna.  Brenna is a beautiful little girl who was born with a very rare skin condition called Halequin Ichthyosis.  I've known her mother since childhood and when she asked me to do a guest blog post as part of her "Celebrate Visual Differences" series, I was honored to take part.  Courtney, thank you for allowing me to share my honest insights on what it was like growing up with a sibling who is "different". 

 

You can read it, HERE.

 

Email from Aunt Leanne - It's about time!

It's been awhile since we've received an email from Aunt Leanne.  I was starting to go into withdrawal without Leanne's unique take on life, child rearing, and of course, food!

dear sister

behave be good

srtawbeerrybanna

or

timeout

joise catish withketchup

I bowl 89

80score.breakfast

was chicken sliders

lunch was

bacon lettuce

tomatoes

bread toast

mayonnisesauce

I

love

seeyou

soon

Leanne cheesebugerhead

nickmane

 

 

Behave or timeout - Who needs Super Nanny when you have an Aunt Leanne?!  Thanks, Leanne.  We miss you and cannot wait for you to come back and get these rug rats in line. 

Surviving the Hard Days

This toddler thing can be tough and there are moments when Travis and I find ourselves wishing that these kids would just grow up already and become a little more independent so we're not constantly feeding, dressing, chasing, correcting, redirecting...and repeat...ALL DAY LONG.  We daydream about the day when they can cut their own food, put on their own shoes, and wipe their own rear ends (oh how liberating!). 

 

But there are moments that always causes me to pause and look at things differently.  These moments instantly dissolve the feelings of stress and exhaustion and replace them with a genuine, in-the-moment appreciation for the two tiny tots that stand before me.  These moments occur when we encounter a woman whose children are grown.

 

Though they vary in age from youthful and vivacious like YaYa and Mama Hop, to the most elderly of senior citizens, it's the grandmas of the world who have so much to teach those of us who our currently mothering.  It's always the grandmas who stop me in the grocery store to fuss over my little girls with such warmth and sincerity.  You can see the twinkle in their eyes as they reminisce about how my girls remind them of their own children when they were young.  And in those moments, these women are not recalling the Sit Down!/Don't Touch That!/Use nice hands with your sister!/I just told you not to touch that!!/Behave!/Listen!/Cooperate!/I need a drink!!! soundtrack that echoes throughout my days...

They're remembering the thrill in a toddler's eyes when she discovers something that the rest of us perceive as mundane.   They're remembering the innocent laughter that is so fun and easy to elicit in children.  They're remembering those tiny little hands reaching for her mother when she's seeking help, comfort, reassurance, and affection.  They're remembering feeling needed.



And judging by every story that YaYa and Mama Hop have told a hundred times about when their children were little, I'm convinced you don't remember the hard times.  You only remember these adorable little people doing the most adorable little things for a period that was all too fleeting... 



...and when the advancing years offer a maturity and hindsight that those of us who are currently "in the trenches" with toddlers do not yet possess, you realize those were the best days of your life.

 

And that's why I perceive these mothers whose children are grown as little angels who pop up at various times with a message of encouragement to help me make it through the hard days.  I suppose that someday I'll be the elderly woman in the grocery store, stopping a frazzled young mother to fuss over her children and I'll look back and remember how it was the most difficult job I ever had, but I was abundantly blessed to be able to do it.

 



 



The Grandparent Takeover

Over the weekend, some dear friends of ours got hitched in a small town in Illinois.  Travis and I were honored to be asked to be in the wedding party.  It all came together beautifully when YaYa and Papa volunteered to keep the girls so that we could travel a significant distance to participate in the wedding.

 I'd never left the girls for that long so I went into preparation overdrive; neurotically organizing, labeling, texting my mother-in-law friendly reminders, and drafting an 11 page instruction manual.  I know, I know.  I've probably earned some sort of formal diagnosis in disclosing that much, BUT...

 Once all that was taken care of, Travis and I hopped on the next flight out of town and let our hair down while Papa and YaYa tended to the daily routine of meals, baths, therapy, and gymnastics.

 We knew we'd left the girls in good hands and that they would have tons of fun with Travis' parents.

 We knew they'd receive plenty of love and attention...

 ...and that there would be no disruption in the M&M distribution either.  YaYa is liberal with the M&M's!  Merryn also learned a new word: Nutter Butter!  Isn't that what grandparents are for?!

 Speaking of grandparents, Mama Hop recently got an iPhone and her text correspondences have been downright eligible for the "Crazy Things Parents Text" website.  Like this doozy I received while I was away...

Little did we know that back on the home front, YaYa and Papa were entertaining the girls by showing them Miley Cyrus' VMA performance on repeat.  Within 24 hours of receiving that text from my mother warning ME not to get my twerk on at the wedding, I got a questionable little video of our beloved "Thelma" doing just that!

Oh that child!  I don't know what we're going to do with her.  Papa's got a couple of ideas...



 Overall, the weekend was a huge success.  We all emerged completely exhausted and enormously grateful for each other. 

A million thanks to YaYa and Papa for taking over this nutty nest of taxing toddlers.  They did a fantastic job!

 

A big congratulations to Curt and Marie - here's to a lifetime of love, laughter and happiness.  Thanks for inviting us to be a part of your special day!