Sunday, October 31, 2010

31 for 21: Halloween

Welcome to Cameran's 2nd Halloween.  Last year we went all out and dressed as a peapod AND a kangaroo.  This year we went for simplicity....Pumpkin Cheerleader...

 We started off the evening at our good friends' house.  Their kiddos are Phineas and the two black kitty cats in the back.  Next to P is a very adorable spider, who just happens to belong to another friend who happened to capture these photos!
 And who can forget the two identical, itty bitty twins flanking the outside of the picture?!  Too cute.
 Getting everyone to cooperate at the same time was hellacious wasn't happening.
 But if you scroll realfast it almost looks like they are all looking at the same time.
 Miss Cami actually did quite well considering all the photos I took of her... 
 ...Although here she is not looking to thrilled...
Daddy and Cameran were big hits at each of the houses!!

Thursday, October 28, 2010

My Favorite Time of Day the hour and a half after dinner that we spend together as a family.

I love watching Cameran and all of her new communicative expressions, like eyebrow raising and frowning. I love how she sits Indian-style and tries to bounce up and down. And let's not forget about how she tracks Jasmine like a hawk. Anytime Jazzy walks nearby, Cameran is trying to reach out and grab pet her.

But best of all is the love I have for Ryan when I catch glimpses of him smiling at our daughter, reading his mind, knowing the type of awe we hold for each and every nuance of her being. I can't describe this smile, and probably will never capture it in its purest form on camera, other than to describe it as one of pride mixed with euphoria. Nothing lights up Ryan as much as watching and interacting with Cami, and I love that about him.

He reads to her with a mix of tenderness and silliness and dry-added humor only those who know Ryan can understand. Tonight six books were read aloud, followed by some bouncy-walker time. Bed time routine follows, and then it becomes couple time if Ryan hasnt already passed out on some non-bed surface.

Good night.

Monday, October 25, 2010

Giveaway over at Treasured By Holly

Here is the link to a giveaway over at Treasured By Holly, a collection of adorable crocheted items for babies, toddlers, and above!

Sunday, October 24, 2010

A Weekend in Pictures

Catoctin Colorfest on Oct. 10th.  Nanny, Cami, and Mommy

Saw these at Target and couldn't resist!

Cameran loves Violet.

"Oh, I love my squishy, purple puppy."

Daddy and Cameran storytime

Pappy makes me smile.

A lot!

Hi, Blog friends.

What? You think I'm cute?  Why, thank you.

Here's my model pose, just for you.

What?  Daddy likes the Packers.  I can't help it.

Come on, Packers, don't lose!
There you have it. A weekend in pictures, plus a few forgotten ones along the way.

Life is good.  Now it's time to soak up the remaining few hours of the weekend.

Good Night.

Thursday, October 21, 2010

19 months

I can hardly believe my baby is 19 months already!

Happy birthday, Peanut. We are constantly in awe of you.

Congratulations, too, on your daycare boyfriend. Let the record show that today when I picked up Cami she received her first kiss-on the mouthish area-by her little bf, who reached up to say "Bye". I leaned down and bam, he planted one. Then his identical twin toddled over and, not wanting to miss the action, planted his own kiss on Cami. (It appears twin 2's technique is better ;). Apparently the one twin stood by her walker today and repeatedly tried to vie for her attention. "Cammin. Cammin. Cammin, Baby. Cammin, Baby..." is apparently his pet name for Peanut. Too cute.

At least I know she won't be alone in a corner when she scoots herself away from everyone.

Starting young Cami. Daddy is gonna have to install extra locks to keep you in and boys out when you get older!

Too cute.

Wednesday, October 20, 2010

Parallel Thoughts

Here is a link to a news article entitled "Insensitivity to Handicapped Individuals Demeaning" by Aaron Fichtelberg

It hits home in terms of his attempts at educating others about the unnecessary, callous, ignorant usage of the words "retard" and "retarded". 

I will copy and paste below for those who do not care to link to the original document...

It's going to happen again today. Somebody is going to publicly humiliate my disabled son.

It may be somebody I respect and admire, but it's just as likely to be one of my students or some snot-nosed teenager posting anonymously online. It could even be a close friend or coworker.

They'll call somebody a "retard" or "retarded." They'll say it to a friend over the phone in public. They'll post it on Facebook. They'll send it to me in a text. They'll use it in an answer for a question on my midterm. They'll be oblivious to what they're saying.

It's an easy word to say and it's just as easy to forget what it means. I used to say it too. I was probably worse than most people-for cheap laughs I would bend my wrist and tap it to my chest in mockery of a person with cerebral palsy. The first fight my wife and I got into happened when we were dating; I made a crack about "riding the short bus."

However, shortly after my son was born, when his body began twitching and convulsing during the seizures that shredded his brain, I very quickly learned how wrong, how stupidly wrong, I was. Because of my personal actions before my son Theo was born, I can't sit on a high horse and act like I am better than others, but I can be completely aggravated that somebody is insulting a sweet, innocent child who never did a single thing to them.

A person who called someone a racist or homophobic term would be publicly disgraced if they were discovered. A student who painted his face black and shuffled his way across the stage during a student event would probably be expelled. But luminaries like Jon Stewart, Ben Stiller and even Barack Obama can take a swipe at the disabled in front of millions, without suffering any real consequence.

The n-word is a hate crime. "Retard" is a punch line.

Racist and homophobic language is bad, but at least a black man can stand up for himself and fight back against his accuser. A gay man can turn the word "fag" into a term of pride if he's courageous enough. The intellectually disabled can do neither of these things. They take the ridicule and abuse, and according to crime statistics, they are far more likely to be physically or sexually abused than other people are. Stories of caretakers at homes for the disabled organizing "cripple fights" and jokes about "slapping a retard" casually told to me by unknowing and uncaring people keep me awake at night, paralyzed in fear of the fate that may await my son when I can't protect him.

My son, Theo, is a sweet kid who is always full of smiles-for those who get to know him. He loves hugs and tickle fights. He can smile and splash in the pool for hours and will spontaneously hug his twin brother Oliver-whether he wants it or not. He is a kind, loving human being. Like all other kids, he can also be a pain; however, that's the point: he's human just like you and me. To see only his disability is to miss so much. To mock his disability is to be inhumanly cruel.

Bill Maher once said that he wasn't referring to the intellectually disabled when called an opponent retarded. South Park tried to do something similar with the term "faggot" a while ago-trying to give it a meaning that wasn't a slur on homosexuals. I doubt Maher was being honest, but even if he were, it's beside the point. Despite what Kyle and Cartman might think, we don't always get to determine the meanings of the language we use. Society understands that when we insult somebody by calling them a retard, we are linking them with the intellectually disabled. This makes these people laughable, pathetic and even sub-human. Nobody ever uses slang terms for the disabled as a compliment.

I know that many college students are oblivious to the hurtful language they use and will dismiss what I'm saying as "politically correct" whining. Most individuals have not been fortunate enough to know or love somebody with an intellectual disability, to understand their challenges and their joys. But before you call your friend a "retard" or describe your least favorite professor-or perhaps this article-as "retarded," remember that there are human beings out there who live in the shadow of that word. How we speak about our fellow human beings says more about us than it does about them.

Monday, October 18, 2010

Buddy Walk 2010 in Pictures

There are no words to describe how absolutely joyous it feels to know the depth of the loving people we were surrounded by on Saturday, October 9, 2010.

I don't think even a panoramic camera could've captured all of Cami's Crew!

If Cami wasn't, well, Cami, then I am afraid to think of all of the little things as parents we would be taking for granted. But, thanks to that magical extra 21st chromosome, we push forward, day by day, celebrating the minute, the small, the big, and the gigantic accomplishments of Cameran as if they are each a milestone that all children's parents celebrate.

Sitting up on soft AND HARD surfaces (as of the weekend). CHECK.

Reaching up when you say "Up", and not just for clothing. CHECK.

Craftily taking off both socks, jammie bottoms, and diaper tabs. CHECK.

Rocking the 4 point crawl stance like she is a sprinter ready to take off at a race. CHECK.

Maneuvering through the house in her walker that she walks bounds like Tigger in. CHECK.
There are so many more things that are exciting right now in little miss Cami's world. Right now she is fascinated with her two puppies (the fake ones that sing and say colors). They make her light up in a way that exudes radiance from her tiny little face.

But enough of that. Back to the Buddy Walk, which is what this post is supposed to be about....

Our little buddy, Caleb, did an awesome job leading the Crew around the trail, holding Cami's sign proudly!

Both sets of grandparents came!!!

Oh, and not to toot my own horn or anything, but we raised over $4,000 in support of our local Ds association, and in doing so, scored a "top fundraiser" prize of a season family pass to the Baltimore Aquarium, AND I am also the proud winner of a raffle prize....Not the hot air balloon ride, not the Signing Times DVD set, not the $50 gift card to Olive Garden.....wait for it.....I won a 3 month gym pass! I guess it really is time to slim down!

Thursday, October 14, 2010

The Importance of Reece's Rainbow for Eastern European Orphans...

Here is a link to Gretchen's blog one of many family's who have adopted from or are in the process of adopting from Reeces Rainbow.

An excerpt from her experience in Eastern Europe...

Anne Marie...Anya...has gone to a far greater place. She is now in the loving arms of her Father. She is in the arms of her Savior, Jesus, and wrapped in the mantle of her heavenly Mother, the perfect mother, Mary. Why then does it hurt so much to all of us who advocated for her and loved her here below?

Anya was a beautiful girl, born November 25, 2005 in Eastern Europe. She had Down syndrome.

She was likely born to parents who were shocked, fearful and felt helpless. She was likely abandoned at the local hospital, as most are, and stayed there for two weeks before she was moved to the regional hospital until she reached two months of age. From there she went to the region's orphanage. The same orphanage as our sweet Stas.

A beautiful picture that Heather made to advocate for AnneMarie.

She is another person that would have gotten her had she been able.

Born with a heart defect, which likely could have been repaired had she been born in the the U.S. or a healthier society, Anya entered a low-stimulation room and stayed there day after day. Her days and nights were spent in a crib. Mostly likely she slept in one crib and played in another. In the warm months she made frequent trips to the doctor's office in the orphanage to get IV hydration. She was not allowed to walk because "it was too hard on her heart." When families would ask about her she was waved off as a piece of filth. The caretakers, who seemed very kind, would point to her heart, draw a heart on their own chest, scowl, and wave their hand at her as if to "shoo" her away, and let me know she wasn't worth taking. Their hand gesture let us know that she wasn't even worth our inquiry. They were quick to point us to another child or of whom was sweet Taya. She had her forever family coming for her shortly...praise God!

Anya had weaseled her way into our hearts before the trip to go get our precious Stas, but after meeting her and spending time with her (though not enough) she bedded down in our hearts. My daughter Lizzy spent some nice time with her and has some beautiful pictures with her playing "patty cake", "peek-a-boo", and giving her a little hand massage. I'm glad she got to experience this little innocent soul. Anya touched her deeply. I haven't told Lizzy the news yet and know she will hurt deeply.

One warm summer day while visiting Stas we brought lotion, baby bath and baby powder to Anya and Taya's group. We saw their group once or twice a day sitting outside under the tree in little umbrella strollers. Many lay in portable cribs or buggies. There room was on a lower level by an outside door which allowed them to bring strollers and cribs outside for fresher air. Feeling a little brazen, I put lotion on my hands and started giving some mini-massages. First to Taya and then to Anya....oh, that felt so good....for me. It was fascinating to see little Anya come to life after that massage. Her senses were awakened. She craved attention. Every time we walked by she watched our every step. Every picture we have, with her in the background, she was watching intently.

I ponder why it hurts so much for us that loved her so much. Don't we want heaven for all people? Yes. Anya was loved and we WAITED for her forever family to find her. She found her heavenly family, the best there is. Shouldn't we be rejoicing? Of some level. But, Anya represents every other child in Eastern Europe with Down syndrome or any other disability whose life here on earth will be snuffed out because they were not born "typical." They were born into a post-communism society that is repressed and unable to care for the "least among them." The society doesn't know what to do with these children/people. In communism, the focus was on productivity, and from a work-force perspective, they weren't productive. So...they got sent away. There are those in Eastern Europe who advocate for their own children or others with special needs and we can pray that someday they welcome these precious children and learn that they are the best teachers we have. Of course, we in the U.S. have a lot to learn too...with an abortion rate of 90% among those discovered to have Down syndrome our hearts are not where they should be yet. These precious children are teachers of our souls. They do our heart so much good.

By the age of 4-6 years old, children in Eastern Europe with special needs are transferred to mental institutions. Their prognosis is bleak. I have been told that 80% of these children die within the first year of transfer.

If you see this post and are moved, please pray for these children. Go to and see if you are being called to adopt one of God's special children. Yes, it is expensive. The reward is unbeatable. These children need a loving family. A mom to hold them in their sadness and praise them in their accomplishments. They need a dad to love them and cherish their goodness, throw them in the air and make them giggle. They need siblings to be their lifelong cheerleaders and unconditional friends. Might you be that family?

Here is Anya....look at her inquisitive nature. Look at her giggle when Lizzy just waved at her. I wish I would have ripped her out of that stroller and just hugged her and hugged her....

Rest in peace sweet Anya!

What should come before "Welcome to Holland"

Amsterdam International

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." (see previous post below). It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.

And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport.

And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . .

but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this damned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all!)

And their attempts at sympathy?

While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

And what you keep thinking...

but can’t bring yourself to say aloud...

is that you would give anything to go back in time a few months.

You wish you never bought the tickets.

It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport.

You will.

And as you learn more about Holland,

and see how much it has to offer,

you will grow to love it.

And it will change who you are, for the better.

by Dana Nieder, 10/2010

Falling Short 31 for 21

As I began this blog in February I realized that it was going to be a personal challenge for a multitude of reasons: being a new mom, being a new mom to a child with special needs, being a new mom of a child with special needs who has a ton of papers to grade because she is a teacher, wife-y things, time management issues, procrastination issues....I could go on and on.   I know myself, and I know that I have never been a good journal keeper.  Baby book-keeping...Fahgetaboutit.  I knew when Cameran was 11 months old that I needed to do something to record memories, and the result is this blog.  As far as I know her (two) baby books are collecting dust in a closet in one of the rooms upstairs.

Then I learned about the 31 for 21 challenge.  Thirty one days of writing about Down syndrome to promote awareness.  I made it what, seven of those days before throwing in the metaphorical towel??  And it's not that I don't think I am up for the challenge.  I surely advocate for my daughter and love sharing with others.  I am not an overly-private person, and I certainly don't beat around the bush. But for me, this challenge has been TOUGH.  I am not giving up.  I have a ton to write about, especially since our Buddy Walk this past weekend was so amazing, especially since my in-laws came and surprised us.  And the pictures...I have tons of pictures thanks to my dad, my friend Emily, and those from my own camera.  The challenge is finding time to sit down and load them onto the computer. 

I think my issue is that my days and nights don't revolve around Down syndrome.  They revolve around Cameran (and Ryan, too).  For me to focus on Ds itself makes it feel like that is our whole life and all we think about with Cameran.  That is absolutely not the case.  So, for the rest of October I am going to attempt to post more frequently and to continue with the spirit of 31 for 21, but mainly I am going to focus on my DAUGHTER and our family, and Down syndrome can come along for the ride.


Friday, October 8, 2010

T-Shirts and Wagons and Buttons, Oh My; 31 for 21 Day 8

I am ready to burst with anticipation over tomorrow's Buddy Walk.  I can't wait.  It is going to be one of those sleepless nights because

A.  I need to finish making updated Team walk shirts.
B.  I need to tape/glue the "enhancements" to Cameran's red wagon.
C.  I need to remember the buttons that my friends at daycare created.
D.  I can't wait to see our family and friends gathered in a sea of blues and teals in support of Cameran.

But most of all, I am overwhelmed with the love and support of friends of friends whom Ryan and I do not even know personally, who have supported Cameran's Crew.  In the past 24 hours, we have more than doubled our walk donations, and are now at over $3,000!  I will never forget this. 

This is year two, and I can't imagine life without little Cameran and all of her chromosomes.  Without Cameran, we would never know such a great network of blogging, online, and real-life of special needs families.  It all is rather amazing. And humbling. 

Thank you, Columbus, for getting Amerigo Vespucci's credit for discovering America and allowing millions of Americans the pleasure of a three day weekend.

Happy Columbus Day Weekend!

Thursday, October 7, 2010

31 for 21:Day 7

After a nice long day at work I came home to find the husband might also have pink eye. He had taken his work clothes off and was getting comfortable for the evening when I said I would run out and get food; plus, I had to pick up more buddy walk stuff at the store. No sooner did I say this did the doorbell ring.

Figuring it was the neighbor I took my time walking to the door. I was more than a little surprised to find my MiL and FiL standing outside the door!

FiL had a previous appt at the Cleveland Clinic, and we thought they were driving home, never suspecting they would be headed our way!!! SURPRISE!!

Now BOTH sets of grandparents will be at the BW!

I'd post more but we were out all evening with our visitors ;)

Wednesday, October 6, 2010

31 for 21: Day 6

Although I miss not having my husband's family in the same state, it is refreshing to hear him talking to them on the phone.  There are frequent queries as to Cameran, her health, and her development.  She is out of sight, but most definitely NOT out of mind.

My favorite part of these family phone calls is hearing the husband respond to the questions.  They are upbeat, and positive.  They always reflect what she CAN do, and not what she CAN'T do (yet). (Just like old coaches have instilled, "can't" is a word that should be eliminated.) 

 Part of tonight's big brother phone call was telling about how Cami is doing.  His response was heartwarming and upbeat.  "She's doing well.  Better than before.  Her little personality is starting to peek out, and she smiles all the time.  She gets up on all fours, now it's just a matter of time before everything falls into place."

That's the thing about having a loved one with Down syndrome.  Once the initial shock wears off (and I am referring to those first initial moments when the diagnosis is bombshelled), there is nothing but love and acceptance.  Down syndrome teaches has taught me to live in the moment, and not to dwell in the past nor to look ahead too far into the future.  We have goals and hopes and dreams for Peanut.  We still have worries as well.  However, if we were constantly wondering about future IEP meetings, whether or not she will be bullied or accepted in middle school, if she will drive, will she live on her own, etc., etc...., well, quite frankly I think we might go looney.  Plus, ultimately, every parent's goals are similar: To raise children who are happy and healthy.  That goal remains a constant with or without an extra chromosome.

On another note, here are a few pictures from the past week.  Some are from our local DS Playgroup.

First Mum Mum tasting (by choice) with NO puking!

Playpals pumpkin painting!  Baby hand prints with white paint.  Eyes courtesy of helpers.  Voila! Ghosts :)

My little ladybug.

I am thinking that Jasmine thought Cameran's head would rub her belly.  Instead, Cameran just sat and sat and sat until Jazzy got bored and left.

Good night all.
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