Better late than never, right?

>> Monday, October 02, 2006

Well, to make a long story short, this weekend my three kids were baptised. In the Roman Catholic Church, as in many others, this should have been done shortly after birth. Given my propensity to procrastinate, my geographical distance from family, and quite honestly, my own debates about religion, I wasn't sure when it would happen. But, the fact that Jonah is supposed to make his First Reconciliation and First Holy Communion this year (the former next month!!), I ran out of excuses.

The day was absolutely lovely. My sister, with the same list of excuses, brought her two children, Matthew (12) and Ayla (7) to be baptised as well. My mother would have been so happy -- or perhaps she is. Now, all of her grandchildren have been baptised and have had original sin cleansed away. Archie, in fact, thinks his "meanness" was washed away, LOL, and Jonah had to ask Monsignor Gracz if "his sin went away all at once or if he had to wait a little while for it to happen?" LOL!!

Maren was just delighted by her gorgeous white slip dress -- that matched Ayla's -- and freaked a bit when it was time to have the water poured over her head. As Monsignor said "in the name of the Father, "in the name of the Son, "and in the name of the Holy Spirit" as he poured water on her head" Maren said, "no," stop," and "all done" in unison with him. It was quite funny!

I'll post pics soon, I hope~ but now I must start packing for our Disney vacation. A whole week with my sister and her kids!!! I'm ecstatic, and having cousins around made my kids so happy. Archie even astutely noted that Maren needs a big sister...she adores Ayla. Ah, but that's something I can't do anything about right now :-).

Happy Fall! Carol


It finally happened

>> Tuesday, September 19, 2006

Archie (nearly 4), stormed down the stairs about 30 minutes after I put him to bed, "Mom, I wish Maren didn't have Down syndrome." My heart could my baby boy say this about his sister -- Down syndrome is a part of her I'd never want to take away. "Why Archie?" With a disgusted huff and folded arms, he responded, "Because she won't stay out of my room so I can go to sleep." Bahhhhhh! Apparently, for Archie, Down syndrome means "annoying sister activities." Well, I laughed, and explained to Archie that all sisters and brothers annoy one another, and this has nothing to do with T21. Oh, said Archie, "so if I take away Down syndrome Maren would still come in my room?" Yes, Archie, she will still come in your room. And with that, he returned to bed, and moments later I hear the pitter patter of little feet as Maren snuck back to Archie's room to snuggle her brother. Sorry Archie, your stuck with a sister who loves to be with you. Must stink, eh? To be too loved....what a problem he has!


Maren's First Prom Picture!!

>> Saturday, September 16, 2006

I never went to my prom. I was the girl that just didn't get asked. I had lots of boy "friends" but never a "boyfriend" in high school. So, the possibilty of my daughter not going to prom never seemed like a T21 thing. But, Maren just has the fabulously magical personality -- hence my blog name. And, boys and girls alike seem to gravitate to Maren. At soccer, even, I've had moms and dads come up to me to tell me how much they adore watching her, and some even have told me that they remember her from the dance recitals!! And, really, it's not a T21 pity thing, it's a "that kid just radiates" thing -- but to understand, I guess you'd havae to be there, LOL.

Anyway, RISE is doing a Save the Date Card for a New Year's Fundraising Ball. And, here's the pic from the card -- Maren's first of many prom pictures, I'm sure :-).


Sick of soccer yet, LOL?

>> Wednesday, September 06, 2006

Well, two weeks in and I'm holding up. I'm having to work on my identity issues a bit...but hey, the kids are having an awesome time and I adore the coaches. Coach Mike is a colleaugue's husband and is simply phenomenal with kids. Each time Maren is supposed to go to a different coach for drills, she somehow winds right back up with Mike...she adores him.

So,here are some shots of the kids, and in particular check out Maren's's a hoot!


Labor Day

>> Monday, September 04, 2006

So, it's labor day and what am I doing? Laboring! Yes, that's right. While Jon is out having fun with the kids, I'm in my office working. Taking a quick break, I thought I'd share a pic from this time last year that always brings a smile to my heart!

Roll Tide Roll!!


Yes, It's true. I'm officially a Soccer Mom.

>> Friday, September 01, 2006

Well, we made it through week 1 of soccer practice. And, quite sheepishly I admit that I rather enjoyed it :-). Jonah is in the 8 and under group, Maren and Archie are in the 6 and under group. The practice times are actually quite fun for the kids. There is no goalie, no scorekeeper, no real competition. The parks and recreation department has set up this soccer league for kids to learn the rules, and to enjoy playing soccer. My kids are having an awesome time, and hence...I am loving it too. I don't have to listen to competitive parents screaming at their children to be more aggressive. I don't have to watch coaches berate children because they kicked the ball too far away from their bodies.

Instead, the young kids play "kick the coach" and try to chase the coach with their balls. They play "chicken nuggets" as they try to learn to change feet on the ball. They play "soccersauraus" as they try to keep the ball away from the coach so he or she doesn't "eat" their ball and walk around with it under his or her shirt. The kids squeal with delight and are learning to play a sport under optimal conditions. Who could ask for more?!

So, then, you ask, how is Maren doing? Well, on Tuesday I'll take some pictures because a picture truly is worth 1,000 words. She's decked in her pink Diadora soccer shoes, pink shin guards, pink shirt, and pink glasses. She's the soccer diva!!! She is loving playing out there and though she certainly isn't the best player -- she isn't the worst - BY FAR, LOL.

And, again, as I watch her play next to Archie who is just so athletic and natural, my heart swells with pride and love admiring them both -- just trying their best to be their best. What mom could ask for more? And, as an added bonus...I get an hour where they aren't bickering...peace!


Ah, the end of summer.....

>> Wednesday, August 16, 2006

This summer, I resolved to spend less time on the computer and more time with my own work and with the kids. I think I was quite successful given the date of the last blog post :-). Now, back to reality -- and cyberreality, YEAH.

We had a great summer. Jonah tried skiing for the first time and is now begging for a seadoo boat. Dream on Jonah! But, we will find a place to ski more often next summer. He has started second grade and will make his First Holy Communication around Easter. He is about finished DragonRider, and is looking for more great books about dragons, knights, wizards, and intrigue. I'm so blessed to have an avid reader!

Archie (my would rather throw books than read them kid) has learned to read a bit, and has become quite a little man. Archie Baby is long gone. Well, he still has is Archie-isms: pian-e-o, vessert, porcupines (pincones), and volukus (blokus). He's a hoot that kid! All of a sudden, he likes books and adores puzzles. Who would have guessed??

And, Maren, well, that girl just shines. She is reading her sight words, understanding phonics, and loves going FAST in boats. She is starting soccer, in addition to ballet, this fall. So now, I'll have three kids in soccer. A minivan, a soccer mom....UGH.... I promised I would never become THAT mother. Oh Boy!

So, rather than bore you with all the details of summer, I'll share my two favorite pics. The kids sleeping in the hotel, and the kids ready for some skiing action.

Happy School! Carol


My very own Fairy -- Tale (aka Maren's 5th Birthday)

>> Monday, May 15, 2006

Ah, count the candles.....ah, what a mother can do in a moment of party chaos. Can anyone photshop two more candles on here for me????

Ever since I was a little girl, I've had a love of fairies. They are at once beautiful and ethereal, and spunky and earthly. I love the grace and strength of fairies. I love their attachment to and oneness with nature. I love the notion that they can cast a spell -- and make people see beauty in the world, and can get little girls around the world to believe in the unbelievable. I love sheer thought of fairies -- and I spent many days wishing I could inhabit the fairy world and would lose myself in daydreams of gardens, pixies, and leprechauns.

Well, for Maren's fifth birthday party, she demanded one thing! BARBIE. Okay, for some of you that might not be a problem, but for me, Barbie is horrendous. I detest the image of beauty she represents, from the flowing blonde hair to the unnaturally large breasts on an unnaturally small frame (and yes, scientists have demonstrated that her proportions are impossible and would require the removal of two ribs ;-). So, what's a mother with a 5 year old Barbie obsessed gal to do? Ah, for the saving grace of Barbie Fairytopia! (I'm okay with fairy imagination, but not commodified for marketing beauty falsehood, LOL). Fairytopia --- Barbie's world filled with fairies and mermaids, and mythical creatures galore.

So, Maren's party was a huge hit (other than in my moments of adrenalin rush and glee I only put three candles on her cake, LOL). The guests all got necklaces with their fairy names, they decorated wands, hunted for fairies (girls) or frogs (boys). We played "Help the Fairy Catch the Star" (an artistic version of Pin the Tail on the Donkey). The guests got cute stuffed animal type flowers for their wrists and magnifying glasses, and bubbles. They got more loot than Maren :-). We ate fairy food (bug crackers mixed with colored marshmallows) and drank nectar apple juice. We had a butterfly pinata filled with magical goodies --- all in an idyllic arboretum backdrop. Maren's party was truly fairy-tastic.

She turns 5 officially on Tuesday, but Saturday marked a real celebration of her life with friends and loved ones who joined to celebrate all that is beautiful in life and nature. Maren was the star, and boy did she enjoy being the center of attention!

The next morning (Mother's Day) a sleeply little girl, clad in her new nightgown from her dear friend Emma Grace (daughter of Maren's first teacher), came down the stairs with her party ballons, threw her arms around me and said, "I love my fairy party. I have another fairy day." I think our 6 year old theme is set!

-- Who am I to argue with the Daisy Fairy? She has clearly cast her spell on me and I am offically transfixed by her beauty and magic. And, if my life with my Little Miss Magic is all a dream brought on by pixie dust and incantations, may I never wakeup.


Love my baby girl......

>> Friday, May 05, 2006

To say that I cannot sing is an understatement. When my oldest, Jonah, was just 6 months old, I'd sing to him, and he'd put his hands over his ears. No, I'm not exaggerating, ask Jon. And, by the time he was 16 months old, he'd cry "no mommy. no singing." Guess I'm pretty bad. Now, that wouldn't be such a problem if I didn't LOVE to sing, and if I didn't do it often -- frequently in public. I can't help myself. I'm 36 [(real age 32.5) :-).]

I hear music, and I sing. Okay, to be honest, sometimes I'll even dance. If you've ever seen the show MotorMouth that catches people belting out tunes and boogying in their cars -- well, that could be me.

Well, not surprisingly, my love of singing and be-bopping has been genetically transmitted to each of my children. To be honest, poor Jonah got my tone-deafness, and when rhythm was handed out, Jonah was in the presale line for the next installment of Harry Potter ;-). So, like me, Jonah loves music, but I'll encourage a career in academe, though he quite a proficient second year piano player.

Archie, my adventure, is quite musically inclined. As noted in my earlier blog, he is a songwriter, and can carry a tune, and he even has rythym.And, oh my fairy Maren. She is the most music loving child of them all. She loves music and complains if we go anywhere without the I-Pots (I-Pod). She adores Jack Johnson, Laurie Berkner, Drake Bell (from Drake and Josh), Green Day, Counting Crows and Jimmy Buffett.

But above all, she loves Sugarland and specifically their song "Baby Girl." Maren is convinced Baby Girl was written for her. She asks for it at least 5 times a day, and has since Christmas. I'm getting sick of it, but Maren's love only grows. If Jennifer Nettles saw Maren sing "They say this town, the stars stay up all night" I know we'd have a video booking! She's a heartbreaker.

When people wonder "what life will be like with a child with Down syndrome?" I wish I could bring them to my house and let them peek. For us, it means 3 kids and one wacky mom (and dad watching on) with the stereo on high, dancing and singing, pretending we are on American Idol. It means listening to Baby Girl 500 times because when clasps her hands, falls to her knees, gives me the mischevious smile, and says "please please please Baby Girl" I cannot say "no."

All but one of us, I'm sure, is out of key and Simon Cowell would certainly look on in horror! Paula might compliment our wardrobes, and for our personality Randy would put us in the dog pound. But for us, it's our slice of family love. And when the verse:

"Whaddya know, we made our dreams come true.
"An' there are fancy cars an' diamond rings,
"But you know that they don't mean a thing.
"Well, they all add up to nothin' compared to you.
"Well, remember me in ribbons an' curls.
"I still love you more than anything in the world:
"Your baby girl"

starts to play, I stop dancing for a moment while Maren takes center stage and tries to belt out each word, and runs them altogether so the only thing that sounds clear is "Love your baby girl," and I think "Yes, nothing compares to you and I will always love you more than anything in the world. You have made my dreams come true." What more could a mom ask for than a moment of unabashed dancing and joy with her children.

Of course, thirty seconds later, we are on to "Wake Me up When September Ends" (Green Day) and Archie is going full tilt on air guitar and Jonah anxiously anticipates his air drum solo. And, then, I'm reminded that "the innocent never last." Well, I think I'll hold on to it as long as possible and enjoy our band -- and love that makes singing out of tune and dancing without rhythm, and listening to the same song for the umpteenth time part of what we call happiness.

And, in Maren's words (immitating Full House's Michelle) "Rock on Dudes!"


Siblings, Death, and Down syndrome --- Musings inspired by a 3 year old!

>> Wednesday, May 03, 2006

Archie -- my baby -- my sweet little boy. Okay, not so sweet, and certainly not a baby anymore. He's actually an adventure. Lately, Archie (3 1/2) has been in top form. For the past few days, he and Jonah (7 1/2) have been fighting non-stop. Finally, Jon stops them and gives them the "when your mom and I are gone, your siblings are all you have" speech. Yes, you know the one that comes about 4 years before "I walked to school 5 miles in the snow, uphill, both ways speech." :-).

A few minutes later ChiChi is at the piano composing his latest tune entitled, "If my mommy dies." Yes, you read that right. And, his composition was quite "Barenaked ladies," complete with "if my mommy dies I'll have to drive myself to school," and "if my mommy dies, I'll have to make my own dinner." (I expected to hear, "but we'd would" come out of his mouth.) It ended with a deep, long, and powerful "WHEN MY MO-MMMMM-Y D-I-E-S." Song in motion. That's my Archie!

So, this morning, Archie woke-up in a good mood and so far, the fighting has been a bit less than in days past. I hate to pull the "die" card, but at this point -- whatever works :-).

When people worry about the effect of having a child with T21 (Down syndrome) on their other kids, I look at my three amazingly unique and perfect individuals, and wonder the opposite, "How sad would our family be without Maren?" She is the highlighting pen that makes us notice the uniqueness and specialness of each of our kids. She helps us notice the important, often easily overlooked daily passages of life. She helps us appreciate each moment with each of them. And, because of Maren, we stop and look for the meaning in even the smallest daily event -- and we mark it, color on it, and commit it to memory. We know that we must pay attention to the details, something that often gets lost in a textbook life. We take nothing for granted -- and even enjoy songs about our ultimate demise.

It's easy for people to fear the unknown, I guess -- like death, and for some, Down syndrome. But, with death, most people think that leaving this world brings untold riches in the afterlife, and they take comfort in that. I only wish people would have such faith in the extra chromosome. In this land of unknown, there are untold riches. If you have faith in one, certainly you should have faith in the other. I just wish more people would realize that real "life" comes in embracing the unknown rather than running from it in fear. And, at my death (hopefully a long time from now so Archie will be able to legally drive, LOL), I will know that I truly have no regrets and what ifs. I lived the unknown, and boy is it beautiful. "When I D-I-E" ....... fade to Archie tickling the ivories.


The Switzerland Barbies (Caroline, Mary Ella, Maren, and Alli)

>> Sunday, April 30, 2006


We went to see the Wizard

Our local newspaper had a story about a teen actor with trisomy 21, Ian Terry, on the front page. Ian had two small roles in the Tuscaloosa Children's Theatre production of the Wizard of Oz.

We had planned on taking our 3 kids to see the play anyway -- we love TCT productions, but this made the performance extra-21-special for us. When Ian, and another chromosomally enhanced actor, Carly Lay, walked on stage as Munchkins and Ozians, I started to cry.

I wasn't crying out of sadness, but utter joy. See, I often think the biggest lie we perpetrate in our society is that we just want "happy, healthy children." Deep down I think each of us really wants a superstar -- Dorothy, the Tin Man, even the Witch. We want the child who will steal the show and make other parents jealous. "Oh, I wish Janie could sing like that -- Did you see how well the Tin Man danced? -- One day Elsie will be the marquis actor, I'm sure."

Well, having Maren in my life has brought untold blessings, and sitting in the Bama theatre, I realized one of the most important. What do I want for all my children? To be a star? Sure, maybe somewhere I'll always harbor that dream that seems part of the quintessential American experience. But more importantly, I want my children to fit seemlessly into society. I want them to be comfortable being part of the world -- and to be able to walk through this world with their heads held high, knowing that not everyone can be a star, but that there really is no OZ without the Lullabye League.

I want them to have friends who see that it doesn't take a star to be special, but that life is about heart, soul, and friendship. And sometimes, friends bound together in song are more powerful than soloists singing to their own tune.

To Carly and Ian, thank you for showing us that every star needs a chorus, and that every choir member is special to someone! I adore you both :-). And, when Maren, Jonah, and Archie are ready to perform, may they hold your hands and make the inclusion Over the Rainbow a reality in every town right here in North America.


Jimmy Buffett's Lyrics and a sneak peek into the future

>> Sunday, April 23, 2006

Jimmy Buffett's song that gave rise to Maren's nickname has a few lines that really rang true to my heart this week,

"One day she’s gonna learn how to fly
That I won’t deny
I see a little more of me everyday........
Little miss magic, what you gonna be?
Little miss magic, what you gonna be?
Little miss magic, just can’t wait to see

I have to admit, I have very few real fears about Maren growing up. I know some people stress about having a child with special needs who might need "more" than their typically developing siblings, or who might have social problems more than other children. For the most part I'm an optimistic pragmatist: All kids have needs. All kids have problems. All kids are worth every drop of love and every breath of life.

But, my real hope for Maren is that she has true friendships -- though in reality, I know I have only developed them myself since my mid-twenties ;-). Anyway, our community has a Catholic school that includes children with T21. On several occassions, I've witnessed jr. high school students and elemetary students interact with the kids with an extra 21st, and I've been delighted.

The kids are their "friends" for real -- not just buddies who are assigned to them, or friends out of pity -- even "Christian" obligation. Just friends. One friend of ours, whose daughter is 12 now, reassures me that I'm not wrong. Her daughter is on the dance team, and is a real member and fully included in sleep overs, boy talk (ugh!), and prank plotting.

Well, this week when I picked Maren up, I saw a young girl who is the daughter of a teacher's aide at Holy Spirit. Allison is 14, a swimmer, on student gov't, and quite cute! She looked at Maren and asked, "Does she have Down syndrome?"

I said "yes, she does....." and waited to hear the reason she asked... with a sinking feeling my utopia would be lost. "Oh, I thought so," she said. "So does one of my boyfriends, JonMichael. I keep waiting for him to ask me to our 7th grade dance and if he doesn't do it soon, I'm going to have to go with one of my other boyfriends."

I about cried right there. She knows JM has T21, but for her, it really is just another characteristic, like blonde hair or brown eyes!! If Maren can have this kind of true friendship and comraderie of peers through 7th grade, I'll pay my tuition in one lump sum today!

Anyway, I know many of us struggle with what-ifs, but know that in some place, inclusion can and does work! Here, I think, it works because all the parents are very involved in a small tight-knit community, and the majority of kids stay together from preschool through high school. And, regardless of what happens after 7th grade, clearly a respect and love has developed among the kids here that shows me it can happen anywhere with the right attitudes of parents and school members who stress the uniqueness and specialness of all children!

And, as I wonder if JM will ask Allison to the dance, I also know that my other two children, Jonah and Archie, will have great friends and romantic interests, too. Um, Allison is seven years older than Jonah -- if she likes younger men, she'd make a darned great daughter-in-law!

So, Maren, what are you gonna be? I'm hoping a beauty in a 7th grade prom dress ;-).


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