And back to Bama we go....Roll TIde...

>> Friday, December 11, 2009

I haven't posted this semester because my heart has been torn. I adore living back in a city! Growing up in Miami, Salt Lake, Las Vegas, and Orlando, small towns have never sat well with me, so of course for college and grad school it was Chicago, Miami, and Boston -- then GASP -- Lafayette, IN. I kept telling myself it was only for 5 years and I could make it through that.

So, when we moved to Tuscaloosa for Maren to go to RISE, I kept telling myself, "It's only for 3 years." Then, I found out I really loved UA -- and the Tuscaloosa community is great (see ALL OTHER POSTS, LOL). But, it is still a small college town, and I'm a big city girl.

But, alas, I'm a mom first and foremost, and sometimes it means making choices that are best for my kids. So, back to our old house we go (luckily? it hasn't sold yet!). Jonah is devastated because he has learned more this year than ever, and he's had an amazing time. His teacher is involved, creative, passionate, and he comes home and actually has an answer to the tired question, "What did you do today?"

Archie has tons of friends and birthday parties, and a great trio of teachers, too. He's gotten addicted to Bakugan (UGH!), and is really developing a great little "cool kid" personality he certainly didn't get from HannahMOMtana, LOL.

And, Maren loves, loves, loves her teachers and friends --- has a cute crush on little boy Isaiah, and has picked up on the Littlest Pet Shop toys, and even got to go to the Nutcracker with her class this week. She has really adjusted well. But, after this year, we'd be forced to homeschool Maren -- and take her away from her friends and classmates. If any of you know Maren - that would be devastating! Here, an IQ test is required for services, and that is just one point this mom won't back down on. So, our options are homeschool -- or just move back to Alabama -- where I have a career I love and an already established community. And, Jon can commute -- and I'll just dig in and learn to embrace college town life.



So long, So many changes -- a move, a new school, a flood

>> Wednesday, September 23, 2009

In a 4 month nutshell, Jon got a job in the Altanta area on July 1 and on July 15th, we were moving in to a new home in Cobb County, Ga. And, lucky me -- I commute 3.25 hours each way to work -- but only 2 days a week. And, truthfully, I don't mind it. In the big scheme of things, I'm in the car less than many daily Atlanta area commuters :-). Our master bedroom got some minor flooding in this Atlanta flood -- yeah for renting!

The kids are in a new school and loving it. There are 850 kids, which freaked me out, but it has a great feel, and of course, within the week, as soon as we pulled up, kids and teachers alike were saying "Hi Maren," "What's up Maren," "Hey Maren, want to come play." In fact, Archie and Jonah think it is hysterical that everyone knows Maren, and only their classmates know them! Luckily, they take it in stride and see having Maren as a sister an honor, not a detractor! They like the perks they get from her popularity.

Maren started ballet and tap at a studio close to our house, and she loves her new tap shoes. UGH. I do not...but she's a pretty good Happy Feet kid! Jazz is on hold for now -- we can only do so much :-).

Worst thing about the move...well, now it is not "Can we go to Outback?" me: "no." "How about Chili's?" me: "no."

Now it is, "Can we eat at Bucca Da Beppo?" me: "not tonight."
"Can we got to Dave and Busters?" me: "Of course not, and don't ask about ESPN Zone either Maren."
"How about Blue Moon Pizza?" me: "um, no. we are eating at home."
"I like Tijuana Joe's." me :::::: silence and an eye roll.
"How 'bout Willy's?" me: "Maren, I said no!"
"Okay, I'll go to Fuddruckers." me: "For the last time. I said no. We are eating at home." "Fine...... I'll just go to Chili's." Sigh....

And, then, as she eats the dinner I have prepared -- "Tomorrow I go to the zoo." And, yes, like Finnegans Wake, we begin again!


Real Life Space Cadets...

>> Tuesday, June 09, 2009

When we went to Brig's graduation, we finally made the trip to the Hunstville Space and Rocket Center. It was a great day, and the kids had a blast! The highlight, though, was an unexpected one: Star Trek in IMAX. I'm not a Trekkie (shocker, eh?), but even I loved the movie.

And, there was one hilarious Maren moment. As Kirk and a green alien are gettin' busy, Maren yells out "oooh, they're gettin' sexy!" Great, I guess she really is 8! Sheesh...


A Graduation to Celebrate!

>> Monday, June 01, 2009

This weekend, my kids and I took a two-hour drive to see dear friends, friends of 8 years now, friends we've only seen IRL once, but friends who mean as much to us as people we "see" everyday. We are friends connected by an extra chromosome and somehow, that connection is so deep that words simply cannot convey my feelings adequately, other than to say I truly love them.

So, when we received an invite to Brig's HS graduation party, we were going! And, we did. And, here are some pics that just capture the essence of the connection... Brig and my boys, Brig and Maren, Brig's sister and cousin with Maren, and Brig's brothers and cousins with my sons.

There was no awkwardness. No wondering if anyone would be "looked at." No nervousness at all. Just the kind of ease that comes with knowing that we are connected, and nothing matters except BRIG's HUGE celebration! And, what a peek into the future it was for me :-).


Maren's 4th Dance Recital...The Sea and Hey Mickey!~

>> Sunday, May 24, 2009


Happy 8th Birthday Maren!

>> Saturday, May 16, 2009

The night before Maren was born, I was admitted to Advocate Lutheran General in Park Ridge, IL. I was begging Jon for 5-Cheese Lasagna from Leona's, and cruelly, he turned me down, using the pathetic "you can't eat in labor" excuse. Hullo? Have you given birth? I need energy to get me through it. Anyway, I had to settle for ice chips and sugar-free hard candy. So, today, when I asked Maren what she wanted for dinner, it was only fitting that she asked for Manacotti -- a girl after her mother's cheese and tomato sauce lovin' heart!

Ah, yes, it is true, my little MareBear turned 8 today, and I really don't know how. She was just my infant who talked to angels in the morning. I'd peak in her room and she'd be speaking in the most beautiful high pitched tones that clearly were intended for a celestial audience.

Then, she was my toddler who began ballet lessons and was scared her first time on stage, yet next week, she will have her 5th recital and she is eagerly anticipating her performances. Just a few short years ago, I wondered if she'd fit in with typically developing peers, and today, I have to wonder why I ever worried to begin with; she has dear friends -- friends who see her weaknesses and her strengths -- friends who invite her to parties and sleepovers, and friends who argue with her when they think she is wrong. Friends.

I sit back and just stare at my 8 year old and can't wait to see what the next 8 years will bring. More dance recitals. More friends. More girl tiffs. More sleepovers. More movies. And, boys....yes, in 8 years I presume Maren will have a boys in her life...cute boys! And, of course, she will have heartaches and heartbreaks.

In the next 8 years, Maren will continue to have amazing friends. Some of her friends now will be friends with her for life. She will make new friends, too. But, she will also seem increasingly behind her friends in some areas, as they develop more quickly than she will. And, some kids who have included Maren will fall away as their interests change. Some kids who previously didn't judge Maren will begin to judge. And, her heart will hurt. My heart will hurt.

And, then, I'll step back and dry my tears, shake it off and remember the tween and teen years are rough on every kid -- regardless of chromosome count. I will remember to focus on the friends who love her, not the peers who judge her. I will force myself to the reality of the world: nobody is universally loved. There are people who dislike President Obama, Stephen Hawking, Oprah Winfrey, Michael J. Fox, and even the Dalai Lama. People who chose to be judgmental will always find flaws. They will find them with Maren; they will find them with Jonah, they will find them with Archie, and God only knows, they don't have to look hard to find them with me.

So, each day will will continue to love and celebrate and enjoy all that is our Little Miss Magic. She will continue to grow and flourish. She will get older, taller, smarter, sassier, even funnier (if that is possible!). She will continue to show the world how beautiful she is -- and those who believe in magic, they will certainly find it in her.

Happy 8th Birthday Baby Girl! Each day with you is the greatest present I have ever gotten.


LIfe's a day at the beach...or the pool...

>> Monday, April 27, 2009

This year has been extraordinarily stressful. Jon and I have to find jobs (both professors) in the same city. Timing has not been our friend... So, alas, next year holds yet another year of job searching, and uncertainty, and anxiety, and well, you get the idea.

So, Saturday morning, when we thought we might just explode from stress, we threw the kids in the car with nothing but our swimming bag with suits and pool/beach gear, basic toiletries, and a change of clothes, and decided to head to the beach. It's a 5 hour drive, but when you step on the sugary sand of the Florida Gulf Coast, 5 hours is a small price to pay for Heaven on Earth.

On the way, I checked out hotels on my Blackberry and hoped something would be available. Luckily, tons of locals headed to Talladega (where you couldn't catch me for a million dollars and my own talk show!).

The waves were rough, so we did most of the swimming in the pool, and I didn't even take my camera since it was so last minute. The pics are from my phone. But, we escaped and now, I think we can make it through the next month :-).

Anybody have a few hundred million dollars to give me? If you do, I'll start a new University in Destin -- I'll even name it after you :-).

(The girls at the Hannah Montana Movie last weekend).


A budding friendship...and Hannah MOM-tana

>> Thursday, April 16, 2009

For the last few months, yes months, Maren has been begging me to invite her friend Teresa over to play. And, to be honest, we've been so busy (and her room so messy!), that I've put it off.

Last night, Maren brought me the phone and told me to call Teresa's mom... NOW!... and I did. And, I had the best adult conversation I've had in months. What a great bonus!

Teresa's mom was thrilled I called, said that Teresa has been talking a lot about Maren lately, too. Funny, they were in Kindy together too, but it is only recently they've become closer. These are the times I wish I could get inside my kid's head -- why these friends? Why now? Do they share interests? Are they sitting by each other at school? Did Teresa just have a cool toy, or did she like one of Maren's share day items and it sparked a new friendship? And, what do they talk about when they hang out at school? Inquiring moms want to know.

But, of course, knowledge and nosiness has a price. This one...I'm taking the girls to see the new Hannah Montana movie on Saturday. Steep price, but I just have to know!

And, I may not get all the answers on Saturday, but I know this, I'll get time with my baby girl and Junior Mints -- you could say, I'll get the Best of Both Worlds. Cheap Shot, I know, but I just had to take it ;-).


Sharing in the lives of two adults with T21

>> Wednesday, April 15, 2009

I can't add anything to this gorgeous couple's photo gallery ; instead, I'll let them speak for the themselves. STUNNING!


Susan Boyle, Britain's Got Talent, and Society

>> Monday, April 13, 2009

As she prepared to sing, people in the audience rolled their eyes and mocked her. Apparently, kids have bullied her since she was a little girl because of a disability, and sadly, she told the Mirror, she still sees those kids as adults, and still, they shun her. She is not pretty by a media consumer's standards. And, at 48, she's old -- and we all know that old equals ugly times 2, bahhh!

As I started to watch the youtube clip a friend sent me, with the heading "The Next William Hung," I started to cry. I was devastated that anyone would send me something that deliberately targeted another human being for being different. First, I study teasing, and second, I adore my child with T21. Both of those things make a bit more sensitive than I would have been even 10 years ago.

When the woman, Susan, said she had never been kissed; my heart ached. Nobody should ever be deprived of such a joyous experience -- we all deserve love. I looked at Susan and saw a funny, slightly odd (like most of my friends are odd) woman who would be great company -- and I started to feel sad and angry as I watched this woman get set up for ridicule. What kind of society do we live in? Clearly, one that loves to find people we can ostracize to make ourselves feel better, somehow.

Yet, as Susan began to sing, the audience erupted in applause. They were shocked -- her talent was unexpected. See, we expect amazing things to be wrapped in beautiful packages -- even wrapping our female babies in "bows" to present them to world as beautiful and precious objects of attention. Yet, Susan didn't appear in bows and curly ribbon. She was wrapped, like many of us, in well-worn brown paper -- wrinkled from use and worn a bit on the edges. And, yet, when she "opened-up," her glory was revealed!

I wasn't so much surprised by Susan's talent. If I've learned anything on this journey with Miss Magic, it is to put aside my expectations and embrace the experience as it comes. But, I was stunned by the audience!

Apparently, even those hardened by cynicism, contempt, and derision can open up and experience beauty when it is presented. It provides hope for all of and reminds me that this is why inclusion is so important -- people can't see beauty if we don't share it with them. I may want to protect Maren; hold her back from the possibility of being ridiculed, yet, by doing so, I prevent those who are willing to embrace her -- who simply don't know it yet.

To all those who rolled their eyes, and subsequently wiped their tears -- thank you. I do not condemn you for being cynical; you are part and parcel of our society. But, I embrace you for your openness. It gives us hope for a more loving world. To those who were able to open your hearts to Susan and see the magic in her talent, I offer you a standing ovation.


Archie and Moses: AKA "How can my difficult child be so good? "

>> Saturday, April 11, 2009

So, those who know our family know that Archie is my wild child. He has all all of my bad qualities -- he's stubborn, obnoxious, opinionated, and loud; he would rather lose a privilege than lose an argument. He drives me out of my mind somedays -- I look at Archie and see all that is wrong with me in a mini-form and I get angry that I still carry so many flaws, and that I've passed them on to him.

Then, there are nights like tonight, when I realize that his good qualities far outweigh the bad. He is my child who has never left a child alone on a playground. Since preschool, his teachers have commented on his gentle heart. His best friends at the RISE school were not the other other typically developing children, but the children he connected with on others levels: it never mattered if other children could walk, talk, or even feed themselves. Archie just "connects," in a profound way with other human beings. Even in Kindy, he rarely plays with the same child 2 days in a row. Everyone loves Archie, and he spreads his time around. Very unusual for a child of his age.

Archie shares. His toys are his friends' toys. If he has money at a baseball game, he buys candy for everyone, and if he can't, he shares what little he has. He never eats the last cookie without offering a piece to Jonah and Maren. He certainly didn't get that from me: I dive for the final morsel of any sweet ;-).

And, tonight, I was reminded of this soul like I was last year. The Ten Commandments were on, and the classic film bored Maren and Jonah in moments, just like in 2008, Archie watched the entire thing intently and intensely. He talked about what he remembered from school and church. He wanted me to print The Ten Commandments for him so he could read them when Moses came down from the mountain. He was annoyed, however, by the bad special effects of the burning bush, LOL.

Of course, he donned his costume and helped act out the scenes. He takes his Moses seriously! And, this year, he even played "compare and contrast" Moses versus Indiana Jones' expeditions.

So, though Archie inherited my baggage, he also has blessings of his own -- not thanks to me. And, I wonder ~~ where did this heart and soul in my six year old come from? Was he born with this amazing spirit -- or did growing up with Maren help shape the little person he has become and the little man he is becoming?

I guess what is important is that Maren has Archie and Jonah, and Archie has Maren and Jonah, and Jonah has two awesome younger sibs, and we have three kids to be eternally grateful for -- each so different, so challenging, so wonderful, and finally ---- so sleeping. Ahh, quiet ....


Two educational tools that we are pilot testing

>> Tuesday, April 07, 2009

Obviously, for any child, a parent has a responsibility to make sure the child is being well-educated. For my oldest son, that means letting him explore a wide-range of topics and finding his unique talents. The rote memorization tasks and basic school work comes fairly easy to him, so the challenge is finding things that make him excited about learning.

For my youngest son, it entails a) finding the time to even help him with his schoolwork because I get so busy with the other two -- poor #3! And, b) at this age, letting his imagination take flight with his Indiana Jones Handbook, Lego sets, and the costumes he creates (his newest phase is the James Bond Tuxedo). He is a truly creative kid who loves to be involved and physical. I think he's God's way of reminding me I"m getting old, ;-).

For Maren, the task is not "more difficult," but different. I can have faith that the other two will "learn" at school and at home, I can supplement their education and creativity. For her, however, I know that repetition and extra involvement at home is key to making sure she masters the fundamentals she will need to have to progress as a student.

So, just eight months or so, M was crusin' with her Math Facts. I was delighted and we moved on to other things. WRONG MOVE!~!~ Somehow, poof~!~ Math Facts Vanished! As we worked on addition and carrying numbers, we started focusing on manipulatives and pictures to "see" the numbers. We failed to continue to practice the math facts. And, now, we begin again, and will remember this time to keep the practice up periodically.

We found and so far, just a couple of days in, Maren likes it. It is NOT a fun or games site like Starfall is for reading (which is truly wonderful, btw). It is simple: flashcards online! There are ready-made math cards, but we made our own smaller sets with only 4 or 5 cards at time. We have found that Maren works best if she reads the numbers with the right answers again and again. If she starts guessing without having them cold, she is likely to remember the wrong answer she gave,,,ack! This allows her to sit and practice her facts while I create time for Archie. Again, it is not exciting, but functional site. It was a 29.95 fee and for me, it was worth it!

But, our happy find is a book on CD called "Story of the World." We have Volume 1 (4 CDs) checked out from our library. Jonah grabbed it because he thought it would be interesting. It's a very basic look at history, but through narratives aimed at children. It is read by Jim Weiss who is an amazing book on CD actor -- we love a lot of his work! Jonah found it boring, but Maren and Archie are enthralled!! And, they are learning history from the beginning -- The Nomads. Imagine that...history before George Washington ;-).

So, why do I recommend this? Well, Maren asked if we were crossing the "Tiger" river when we used the bridge over the Black Warrior in Tuscaloosa. Okay...we aren't in Turkey and no, it isn't the Tigris, but hey, she is learning the rivers of the world and enjoying it! She has asked about growing corn in our backyard (like the nomads who became farmers) and she wants to write on clay instead of paper :-). For a seven year old, I"m delighted!

Archie loves them too. He told me that Indiana Jones was an archaeologist like they talk about on the CD, and has discussed at length several concepts from the readings! Certainly, these are not a substitute for reading with my kids, or teaching them from paper books, but what an awesome and engaging supplement! We listen in the car (Jonah wants to listen to his Ipod instead), and then we can chat about what they are learning. Yeah....history is a topic I would have never "pushed" for Maren as we work on the fundamentals of Reading, Writing, and Arithmetic, so what a joy to find a new subject she loves! We'll keep listening and talking about history and then move to Volume II.


The morning pick-up

>> Saturday, April 04, 2009

Apparently the girls had an amazing time and they rushed me when I came in to fill me in on the party~! They learned a new dance, pigged out, and decorated craft projects. All in all, a perfect girl party. So, Maren didn't sleep more than 30 mins. at a time, according to the dance center owners. She wanted to get up and brush her teeth again, practice her dance, make a new Easter basket, oh...and drink more Mountain Dew -- and there is the answer to her sleeplessness, bahhhhhhhh......


A Catch-22

>> Friday, April 03, 2009

So, I have to be brutally honest. When Maren was born with Trisomy 21, a little part of me was happy about it ~~ selfishly happy.

I've never wanted an empty nest. I like close-knit families and in modern society, I'm terrified that my kids will live thousands of miles away. So, if Maren had T21, I reasoned, I would always have one of my kids at home. Right?

The irony of it all...she's my most independent child. Tonight, she is doing a "Pink Party Lock-In" and her dance studio. Approximately 100 girls from 1st through 8th grade are eating pizza, guzzling soda, gorging on snacks, dancing pop diva routines, and staying up until the wee hours of the morning. You can see the soda behind Maren and her friend Maddy ;-).

I cried when I dropped her off; she couldn't push me out the door fast enough. So, though I am certain we'll always live in the same town and that she will always need additional supports in her life, she's spirited and will not want to live with me forever. I guess that is a good thing, right? I shouldn't complain when I know her independence is a huge asset for her development -- but I'm not ready. I really thought she'd be a "mommy's girl." I wanted her to be dependent, in my own selfish way.

But, then I have to realize that we have been living in a town that embraces Maren and has included her in everything without question. She's been part of friendship circles, dance recitals, and soccer games, even sleepovers. Our community has nourished her and given her a tremendous foundation for learning to be a part of the community. She's never been excluded because of her extra chromosome (in fact -- the one time was in spite of it -- the ringleader could care less Maren has T21 - her sister does as well, bahhh!). So Maren's never had a reason to think there is anything she can't do.

Her friends are completely aware that Maren has T21. They simply haven't cared, to this point. They know that sometimes she is hard to understand, but there is always one child who can figure out every word she is saying. When one kid gets snotty, Maren gets snotty back -- and other kids back her up ;-). When she is treated poorly, it's in the catty way all first grade girls can treat other 1st grade girls.

And, I know that I can leave her because the other mothers or chaperones will keep better watch on her than I ever would! Her college-student dance teacher from last year, Anna, might be told to "buzz off" before the night is through if she tries to play with Maren too much ;-). For that, I will always adore this town and the people we are surrounded by. I know we have a 1 in million community for her. And, even if we move next year (I doubt we will, but certainly in the next few years), I know that she has an amazing start in life.

So, tonight, I walked her into the overnight lock-in, scared of course -- because it is a madhouse -- terrified that she might not see anyone she knows, scared that she may not be able to clearly communicate with a new group, worried that she'll be excluded, and sad that she is growing up.

But, we walked in and her friend Maddy found her right away, and after she dropped her sleeping bag off and walked into the large play room, I heard a chorus of voices calling, "Maren -- Maren's here -- Maren come over here -- Sit by me Maren." And, she pushed me out the door.

So now, to keep my full-nest as I grow old, I might just have to hope Jonah and Archie are "mama's boys." Maybe I need to start telling them "Foosball's for da devil" and that their daddy died of dehydration. It worked for Kathy Bates in Waterboy. Think it will work for me? Hmm... Where is that medulla oblongata?


Maren's first Play

>> Thursday, April 02, 2009

Maren's class is putting on a fairy tale skit for the end of the year assembly. She told me about the play, and I assumed she'd be in the "chorus." WRONG!

She is princess #3 with several speaking lines to memorize. And, she is practicing diligently already. Several of her lines are so Maren -- like offering mints to an ogre with bad breath ;-).

I'll definitely film it when they perform. First the dancing stage, now watch out Hollywood :-).


Who needs a Blackberry when you have a Maren?

>> Friday, March 27, 2009

So, things have been outrageously busy around here. It's always one thing or another...a phone interview, an interview, a job offer, a job rejection -- and the cycle continues in our house. So, we've done a lot of rescheduling.

Monday night I realized that we blew off speech therapy. I rescheduled it to begin on the Monday after Spring Break and forgot to type it into my Blackberry, so it never synced to google calendar where Jon and I try to maintain controlled chaos.

So, I turn to Jon in horror and say, "UGH, we missed speech and didn't even call Betsy." He looked at me and said, "Oh, Maren mentioned it on the way home and I thought she had her days wrong." Looks like she's more reliable than the Blackberry. And, of course on Tuesday when she told Jon she had Ballet (moved from Thursday), he listened :-).

Note to Self: Maren has great day of the week skills! Check that off of any future IEP.


Not a stranger, a H__M __ ___

>> Friday, March 13, 2009

I've been meaning to post about this for awhile, then forget. So, here it goes.

For a long time, I've been worried about Maren and her trusting nature. She's never met a stranger, but if you've ever met me, you'd realize that it may be in a chromosome other than her extra 21st. When I was 5 or 6, my parents spent several frantic minutes searching for me at a state park. Each time they'd ask someone if they had seen a little redheaded girl, they'd inform my parents that I told them I was hungry and they gave me food and I headed on my way.

Finally, they found me in an RV with a nice family who was again feeding me and trying to figure out how to find my family...How I made it through childhood, I'll never know.

Anyway, Maren has that sense of familiarity with the world, and obviously, I'm terrified that in this day and age, she could become a victim of some unscrupulous and horrible person. So, we work a lot on strangers. To no avail. We talk about strangers. We talk about stranger danger. I warn her.

So, we were at Publix and my Little Miss Magic begins a conversation with a cute college-aged boy in the front of the line. They start chatting and before you know it, he adds M&Ms to his order. As he's leaving, he hands them to her, and she beams and gives him a HUGE THANK YOU! Ugh. At least she knows her manners....

After he leaves, I take them away and tell her we cannot take candy from strangers. With a look of disdain and contempt, she stares me down, "He's not a stranger; He's a HUMAN!" And, she stomps her foot.

Alas, he's a human. Too bad we can't all see such sameness in the world.

Too bad I can't rely on the fact that all humans are kind. The world would be so beautiful if the humans could act the way my daughter believes they will :-).


Maren's Field Trip

>> Sunday, March 08, 2009

This week Maren went with the entire first grade class to Barnes and Noble, and then to the Children's Hands-On Museum. I've made it a point not to chaperon her class field trips thus far because I've wanted her to interact with her peers outside of class, and I know her well enough to know that I were there, she'd probably hang out with me and introduce me to all of her friends and drag me along with them. (***And, I know the teachers and the other moms very, very well and know for a fact they would never, ever let my daughter out of their sight!***)

Last year, they went to Shark Tooth Creek, and she was fine! This year, again nothing to report. YEAH! She had a great time; the mom in charge of her group gave her a huge hug and said "I had a great day Maren," and that's it. I love these moments more than anything. Maren will always have an extra chromosome; it is never, ever going away. But hey, what a great and typical life she can have ~~ field trips, dance lessons, soccer practice, concerts and plays, and someday (not too soon I hope), dates!~~


It's time for Chick-Fil-A mommy?

>> Friday, February 06, 2009

Maren just walked in my room and said, "Mommy, it's time for Chick-fil-A?"

"Why Maren," I asked.

"You said we'd have Chick-fil-A for my movies," she responded.

My head whirled for a moment. Ahhh... this morning she asked if we could watch Enchanted and Barbie together tonight. And, I told my fabulous seven-year old I'd love to have night of popcorn and "Chick Flicks."

Now, I feel compelled to go grab some nugget meals with waffle fries. Nothing like a night of Chick Flicks in my world -- which of course now must include the Southern fast food giant!

Chick-flicks-A! Girl Power!


This morning's Mass

>> Thursday, February 05, 2009

This morning I joined my kids at Mass since they go every Thursday with their class. Father Deasy, an amazing Irish priest, treats Thursday mass with kids as an opportunity to have conversations about the bible, and even for me, it is much more entertaining than the formal Sunday Mass.

So, today he was talking about how lions and lambs will one day live and peace and asked the kids what that meant. After a few other children answered, a beautiful 2nd grader, Hollie, who has a brother with multiple diagnoses, including T21 piped up:

"We are supposed to love one another and accept each other regardless of our differences."

That did it... Water Works on. Hollie, you made my day so much more amazing. Siblings will make the world a better place. Thank you Hollie and Zach, for taking this journey with Jonah, Maren and Archie.

I love you.


Groups of Kids with Disablities out in Public?

>> Friday, January 30, 2009

So, I'm wrestling with an issue and this post is more of me talking through that issue than providing any definitive answers.

I'm certainly not in denial that Maren has Trisomy 21. I know it is never going to go away. I know that she will have friends who are typically developing, but that as she grow older, her closest friends will be, and should be, people who share similar interests, passion, values. Heck, I am a social scientist -- we call it homophily.

Yet, I have a horrible feeling in my gut today. The Resource Room teacher at Maren's school, a woman I adore and who really gets IT, took Maren and four other children to a Special Olympics swim meet to cheer teenager with T21 who attends the middle school at Holy Spirit. Permission slips were sent home and Maren really wanted to go. I've known the girl swimming since she was Maren's age. How could I say no? She deserves all the support she can get and I'm thrilled for her! She rocks!

But, I admit I hate the idea of children or adults with disabilities in public together. It makes me shudder when group homes do it; I get angry when ARC does it, and to be honest, I'm thrilled that Special Olympics is moving towards inclusive sports -- maybe now I'll let Maren participate one day ;->.

I believe deeply in inclusion, while acknowledging that we gravitate to people who are similar to us for our closest relationships. Society needs to get out of our stereotypical ways of thinking about disability and forcing segregation. So, from my experience, these group trips, have, I think, the ability to reify the very stereotypes we want so hard to rid the world of -- that demean and degrade individuals with cognitive and intellectual disabilities. I've watched people point, stare, make horrific comments, and even feel pity (UGH!).

Yes, I want Maren to be able to go out with her friends -- just like I did as kid and teen. And, when she's in high school in oh...9 years (ack!), I want them to be able to cruise the theater together. Yet, somehow the "organized" group trips seem so offensive?.!.?

So, I'm going to talk to awesome resource woman -- I don't have the answers-- but I want to share my reservations. Last semester, the kids who use resource services (all with T21) went to a children's theater together. I said nothing then. The feeling is stronger now. So, I'll share my feeling honestly and ask if we can think of ways to make this situation work for everyone. Perhaps each child could bring a friend from class? Maybe a few of us parents can step up and chaperon since the group will be so large?

Perhaps I am a product of the very judgment I'm railing against, but I am uneasy. And right now, perhaps my friends can help me think through this.

With love, Carol being Carol


I found Maren's new theme song.... Little Victories...

>> Sunday, January 18, 2009

...And I love it not just because of my trendy new infatuation with Matt Nathanson, or even that it was featured on Scrubs, but because it is just right on! My job is to help her develop the self confidence to fail, as well as to succeed -- and maybe, just maybe, the world will catch up with her!


This time, I'll be sailing
No more bailing boats for me
I'll be out here on the sea
Just my confidence and me

And I'll be awful sometimes
Weakened to my knees
But I'll learn to get by
On the little victories

This time, I'll have no fear
I'll be standing strong and tall
Turn my back towards them all

And I'll be awful sometimes
Weakened to my knees
I'll learn to get by
And I'll learn to get by
On the little victories
And if the world decides to catch up with me
It's a little victory.

And here is the rest of it.


Fear of the Future

>> Sunday, January 11, 2009

When Maren was first born, it seemed that anyone who wanted to offer well-meaning condolences wrapped in a brown paper package of hope would tell me about the person with T21 that he or she knew from the local grocery mart of discount store. In their own way, those people were trying to allay my fears of Maren's adulthood.

But ironically, her adulthood has never scared me much. I guess I've always had such a dysfunctional extended family that I realized with my genes, there are a whole lot of things worse than an intellectual disability. So -- here I will out myself and my relatives. Depression, Bipolar Disorder, Schizophrenia, Alcoholism, Drug Abuse: All are represented in my immediate extended family.

In fact, my closest brush with fame might be my mother's younger brother Albert. Uncle Albert was a brilliant and budding young scholar with a full-paid scholarship to FSU, and yet, by the late 70s, he was dressed up like Uncle Sam (top hat and all!) and riding a motorcycle cross-country and living anyplace he could find a warm bed. A horrific accident with a deer in Steamboat Springs, CO. and a few more drugs later, and he is known as Leslie Cochran who helps "Keeping Austin Wierd." He can be seen strutting downtown Austin in women's lingerie and high-heeled shoes. Yup. Leslie Cochran is my relative. Down syndrome? Not such a big deal compared to the rough life he leads; though perhaps not a fun either ;-).

So, why all this here, today -- now? I guess I realize that T21 has seemed minor to me because of my frame of reference. Maren has learning disabilities. Others have serious mental illnesses. And, still, Archie my dear six year old...

He wants to be Richard Grieco or Chris Cattan. And, yes, I'm serious. Archie styled his hair quite adeptly tonight and said, "I want to be like Richard Grieco. He's so cool." And there you have it.

Why worry about Maren's job when she grows up? Archie admires guys who wear leather pants and spray on sideburns in Night at the Roxbury. And it doesn't stop there. When we drove down Bourbon Street in NOLA, Archie wanted to go see the naked girls. He thinks beer will taste good. He even tells us he has a Little Captain in Him -- thanks to Capt. Morgan commercials. Ugh. He's going to be a stuntman, and he's already practicing! He has a great sense of humor and an amazing wit. And, yet, I know the teenage years will be rocky and I'll be terrified about getting him through high school, let alone college, without incident. He could hang with the best of Bama Frat Boys!

Somehow, when a parent gets a diagnosis, it's easy to dwell on the could have, should have, would have been, if the child was born a 46er. I find it more productive to look at all of the fears and worries I won't have. I will never worry about Maren becoming an addict. I will never fear her making a fatal mistake of drinking and driving. I will never stay up nights pacing the floor when I know she's out at a party. I won't be trying to explain to a judge why my "child" should be given a second chance after defrauding an elderly person, or taking part in a securities fraud case. Identity theft? Never going to perpetrate that crime either! I have never heard of a person with T21 taking his or her own life, let alone the life of another individual. In fact, I've never heard of any major crime committed by an adult with T21 (unless you are offended, as Dave Hinsburg of Chewing the Fat, was), by an unsolicited hug...bahhh!

And, of course, I hope I will never have those concerns with her brothers. In my hear of hearts, I believe Jonah will become a baseball front-office person, or perhaps an Economist. Archie might actually become a stuntman or rock star, but I'm guessing he'd be a great sales rep and corporate C.E.O. Having his amazing heart, he may even become a special education teacher. Wouldn't shock me in the least!

But, I do not have the same sense of certainty as I have with Maren. So, she will become a teacher's aide, a daycare assistant, a Gap Kids Salesperson, a dance teacher, or if she has her way, the driver of the Barbie Car. And, she'll have a good and fulfilling life, even if it isn't a high-paying, upwardly mobile, divorce-causing, stress-inducing, career that most of us lust after for our own typically developing children. Hell, I won't even be able to brag about her Ivy League degree and 100,000 in student loan debt. Maybe I'll get that satisfaction from my boys ;-).

She'll leave the world a better place because of her presence and leave no harm in her wake. And, in the meantime, I have the pleasure of soaking up the joy that is my daughter.

I have to laugh when people have said, "God doesn't give you anything you can't handle." Huh? have they seen Archie?

And, if they are right, apparently God knew how much laughter and love my heart could hold with Maren. The notion that she is a burden makes me giggle uncontrollably! I've seen my family tree :-) and all the apples that have fallen very, very far from it!


We are such loveable losers, eh?

>> Friday, January 09, 2009

See, even in humiliating defeat (Alabama Sugar Bowl infamy) my kids managed to brighten my day!

And, then Camellia Grill brightened our weekend with a fun and friendly breakfast!

And of course, there is always Cafe DuMonde, Margaritaville, and the Quarter...such a vibrant town.


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