31 for 21, Day 29:Two years ago today....

Two years ago today I woke up in the wee hours of the morning with contractions.

Two years ago today we anxiously rushed to the hospital to find out if today really was the day.

Two years ago today I laid on that operating table with an intense fear, not knowing why.

Two years ago today our precious Evan entered the world with a gurgly cry and an adorable red mohawk.

Two years ago today my world was rocked with those two words Down syndrome.

Two years ago today I thought the earth was crumbling around me, wondering what did I do wrong?

Two years ago today I doubted God, thinking this wasn't how it was supposed to be.

Two years ago today God gave me the greatest gift, even if I didn't recognize it right away.

Sweet Evan, it took me about 2 seconds to fall madly in love with you from the moment I was able to get down to the nursery and hold you the day after you were born.  I love you with my WHOLE heart and can't imagine life without you.  I thank God for giving me the privilege of being your mommy, and for bringing us to this path of giving you another sister... I thank Him for opening my eyes and welcoming me into this wonderful Down syndrome community.... I thank Him for helping me to open the eyes of others so they too can see what I see.  I thank Him for YOU.  I love you, baby boy.  Happy Birthday. <3

31 for 21, Day #28: Halloween Party :)

***PSA: Our adoption blog has moved!! Please update your bookmarks and make sure you click "follow" on our new web address!!  http://www.gracefulbutterflywings.blogspot.com/  Thank you!! :)

Also- a shout out to my readers here- asking if there are any CPA's in the crowd??  We have a document we need signed by a CPA for our adoption process and need it done ASAP.  Please e-mail me if you can help us out!  kaylinsmommy@gmail.com  Thank you!!

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Days 25-27 can be found on our adoption blog HERE.

I've been taking Evan to a little playgroup consisting of other little ones in his Early Intervention program- we just learned about this playgroup a month or so ago and started going as soon as we found out!  Evan appears to be the youngest- usually there are only three other little boys who come regularly- they are all at least three years old.  Yesterday they had a little Halloween party and a few more kids showed up- a couple appeared to be Evan's size but I have no idea how old they are... I'm guessing at least two years old.  Evan LOVES going- lots of new toys to play with, and the past couple times we have gotten ready to leave- he had a complete meltdown.  Well, at least it shows he's having fun! :)

So yesterday's Halloween party consisted of dressing up in costume (Mommies had to dress up also) and trick-or-treating through the school (the playgroup is held at a local middle school- there is another preschool program that uses this room and it is fully furnished as a preschool classroom).  I got Evan the CUTEST chicken costume!!  I didn't mind paying full price (it was on sale at Old Navy) since I scored the other two kids' costumes for $3 or less at consignment sales. ;)

Evan did such a good job at keeping the hood up!!  Usually that is the first to get pulled down on coats, but he kept it on the whole time. :)

Yes, I dressed up also- my dad snapped a pic of us before we left- he spent the day with us today :)  As soon as I came downstairs dressed in my costume- Evan became immediately upset and wouldn't let me hold him at all!!  He settled down enough to stop crying, but was not happy throughout the party. I took my pigtails out during the party and he still made ugly eyes at my face.  Totally didn't expect that!

Clearly those freckles are scary and I don't look like myself! Bad mommy. :(  I guess a chicken has very good reason to be afraid of the farmer!

I took him this morning for his 2 year old portraits- still in denial that my baby is turning two TOMORROW!! :'( Where has the time gone????  I was so nervous about how this photo session would go since the last two (the last one in particular) he did not care to cooperate at all.  But I brought one of his blankies and a cuddly teddy- teddy saved the day!!  Got some cute shots. :)

31 for 21, Day 24: Evan's Birthday Party!

For Day 23's post and info on becoming a Christmas Warrior for one of the waiting angels on Reece's Rainbow, click HERE.

We celebrated Evan's birthday a little early since Kaylin and Justin will be spending next weekend away with MomMom and PopPop while they go on their annual Halloween camping trip!  Ok, I use the word "camping" loosely here as my parents have a big 5th wheel trailer we refer to as the condo on wheels... but they stay in a camp site, cook food on the grill, sit out by the campfire and roast marshmallows.... so I guess it can be considered camping.... sort of. :-P  The kids will get to trick-or-treat through the campground and participate in a costume contest among other fun activities- they look forward to this trip every year.  Once Evan is walking I think he will be ready to go, too. :)

So back to the party!!  We keep birthdays small here, aside from the kids' first birthday when there are lots more people invited.  By small, I mean around 20 people- pretty much immediate family.  Evan was napping when his guests arrived and woke up about an hour later.  As soon as he was up he spied the presents, so we began opening. :)

 (Since we lost our old hard drive, I had to quickly download some free photo software and unfortunately I don't like this red eye removal- didn't quite work so well!  I'll be shopping another program).

Gosh he looks SO big standing there next to me!! Who let that happen, anyway??

Evan was all about the greeting cards!!  He had very little interest in opening his presents.  I thought for sure he would be all about ripping and playing with the paper, but he really didn't want much to do with it!

 Really? Do I gotta?

Well I do like books...

This next toy got his attention for SURE!! LOVED it.

 Loved the lights and music!! It's a little bowling game, but Evan was content just holding onto the ball while listening and watching. LOL

 oooooooo this Sesame Street toy is FUN!

 And who doesn't love Elmo??

Here's a short little video of Evan opening one of his presents- probably the most effort he put into opening- Mommy had to do the rest!

After presents we moved right to cake since some guests needed to head out soon.  I have to give a shout-out to MomMom and Aunt Marie for decorating the clown cupcakes for me while I was running behind trying to finish the cake!

Evan got the red nose since he's not ready to eat the candies yet.

 hmmmmmm.... not so sure about this stuff... you sure I'm supposed to eat it?

And then clapping for himself after taking a bite! :)

After party-goers departed, Evan had fun with his balloons....

And another video post-party of Evan enjoying his balloons. :) And Justin in the background enjoying Evan's new presents. LOL

All in all it was a great day!!  I still can't believe my baby is turning two years old.... more reflection on that coming this weekend!

31 for 21, Day 22: Halloween Signs :)

Borrowing this from another blogging mama, here is a video from our favorite series, Signing Time!!  Enjoy!!

There's a blog hop going on for the 21st of the month!!  Go click the pic below and check it out!! :))

31 for 21, Day 21: Fatherless Friday

Day 20's post can be found on our adoption blog HERE.  There you can find an exciting update to our adoption process!! :))

I've been struggling the past couple days trying to think of topics to write about each day, but am still going strong with the 31 for 21 campaign- haven't missed a day yet!! :))  So YOU could really help me by asking QUESTIONS!! Anything and everything to do with Down syndrome, and I'll even open it up to Reece's Rainbow as well since they also advocate for other angels who do not have DS.  If I don't know the answer, the staff at RR are SO prompt in getting back to me about anything and everything.

Today, I'm going to share a little girl with you- one of the "other" angels from Reece's Rainbow.  Her name is Bethany.

December 2006
Osteogenesis Imperfecta
melx-15

From volunteers who met her:  This radiant girl lives in a Russian orphanage. She suffers from OI {brittle bone disease}, Group 3. She was bedridden for the most of her life; until she was almost 4 years old she could not sit and could not turn over. She had multiple bones broken by simply moving around in bed. Only one year ago volunteers found her in a cast from head to toe. They have begun raising money for her rehabilitation in the American Medical Center in Moscow. As a result, she is now sitting vertically first time in her life. The first time she was able to look out the window, she saw the bleak Moscow landscape of late November and there was no limit for her joy! She takes such pleasure in being able to see that the street cleaning guy has a “soft” hat and that birds are “fuzzy .” Despite having such a handicapped childhood, Bethany is unbelievably bright. At three and a half she knew all colors, 1 to 10 numbers, could recite many children rhymes, and she has a perfect music pitch! According to the nurses, Bethany radiates positivism and humor to such degree that children from the hospital gather in her room for a good laugh, a song, or a story. When it was time for her to leave the hospital and to part with the nurses, she broke down crying for the first time, despite all the physical pain of the hospital procedures. She desperately wants to belong, to be part of a family.

Update Sept 2011:  Bethany is extremely bright child…despite of the orphanage environment, her mental development is far beyond her age group. You should see how she responds to the questions and how she comments…she is so funny and so cheerful. She can sit without a help, but she is still not walking.

Sadly, there is no place for Bethany in her home country.  If she doesn't get claimed by a family, she will be transferred to an adult mental institution.  I cannot even think about her sweet, smart self withering away in such a place.

Check out this video of Bethany!  Even though it is in her native language, below the video is a partial transcript:

-          The journalist is calling her “Sweet little dove”, she says seriously “ Why you are calling me Dove? I am not a dove, my name is "Bethany"”

-          The journalist is asking her “ Do you like to sit in a armchair?”, she responds “ Of course, I like it. It is very convenient in general. You just need to put an extra roller for the back in order your back not to be curved”

-          The journalist is telling to the camera about "Bethany's" medical condition and she comments “ Oh…I understand everything what you are saying here about me…yes…it is truth!”

- When being asked to introduce herself, she is saying " My name is "Bethany" and I am very smart"

- The journalist is asking her " Are your eyes being bothered by the camera's light?", she responds " No, because the light is pointing directly to my nose".

What volunteers who have worked with Bethany say about her:

“[Bethany] sat for the first time in her life! Finally! She sat for ten whole minutes. It made me cry. Imagine, she finally saw things that she had never seen before – falling leaves, a yard-keeper outside. She noticed that his hat was “soft”. [Bethany] is now more mobile. She is crawling in her playpen and can move her legs. She is not afraid to roll over!”

“You've got to believe us, she is not only the most advanced of all the orphans we have ever seen, she is a true genius! She talks non-stop and knows a lot of things that even “regular” children her age don't know.”

“[Bethany] recited me a poem and I told her a story about two silly hamsters. She asked me why the hamsters were laughing and immediately answered that question herself. “Because they are kind and silly, and because they got their grain stash!” When it was time to go, I hugged her and she said that my hair was “tickly”

What a doll!!  She would add so much joy to any family.  For more information on brittle bone disease, go HERE.  

Does Bethany have a chance at living a "normal" life if she is adopted?  Absolutely!  Another child who lives with OI is Atticus Shaffer- you may know him as "Brick" on the ABC sitcom The Middle.  Early therapy and treatment is key, so the sooner she is brought home, the better.

Bethany's RR grant is just shy of $5,000!!  That is a nice chunk of change to get started in her adoption process.  Please share her story, contribute to her grant, send a prayer out for her, anything you can do to lead her to the family she deserves.

***UPDATE*** Not 30 mins after I posted this, Bethany's grant has jumped another $5,000!!! She now has over $9,400 in her grant!!! :))

***ANOTHER UPDATE!!!*** 10.28.11: 

Doctors at the European Medical Center have presented Bethany with a wheelchair, and Bethany moves herself on that wheelchair very dexterously, turning wheels with her little hands.
Bethany plays in a hospital’s playroom with a boy, the same age and OI stage 3 as Bethany, however that boy is walking, and Bethany is not. The only difference between them is that Bethany is an orphan, and boy is staying at the hospital with his Mom. The staff of the orphanage loves Bethany dearly but they can not substitute family’s effort to make a child walk.
The most ground-breaking news: Bethany CAN STAND now! She can stand without anybody’s help, holding bed’s post! Just imagine how happy Bethany was standing first time by herself on the floor! Hopefully, around New Year holidays, Bethany could start walking using orthoses, splints or walkers…
The personnel of the orphanage, who loves Rita very much and greets Rita every morning as their most beloved and important boss, already prepared a pair of special beautiful little shoes!
Bethany has a new nanny; today is nanny’s first day, but she already is under spell of our Asian princess’s charm.
Nanny says that Bethany is extremely smart and that is why it is so easy for Bethany to master geometrical forms, drawing, counting and so on: today they practiced counting backwards.
Currently Bethany can sit and turn in bed, can stand: her bones and back muscles are stronger, her legs are longer, she is growing rapidly, and, consequently, her body deformations are less severe.

31 for 21, Day 19: the current hot topic in the DS community- prenatal testing

Right now, many blogging mamas in the Down syndrome community have been writing about the new non-invasive prenatal test for Down syndrome just released two days ago.  I too wrote about my opinions regarding terminating a pregnancy simply because the baby has Down syndrome, the day before this test was released.  You can find this blog post on our adoption blog HERE.

I wasn't going to get into the whole debate about this specific blood test, because yes, if this test were offered to me when I was pregnant I would have probably taken it.  I would take it to better understand the needs of my child, not because I would choose to terminate.

But then I read this article posted on my blogging friend Jenny's blog.

Sadly, I am certain we will see abortion rates rise as more babies with Down syndrome are diagnosed early in pregnancy.  At just 10 weeks- before many couples even share the news of their baby on the way.... before tiny flutters are felt, before a heartbeat has been heard on doppler in the doctor's office.... before a mother has really had time to bond with her baby in utero, a tiny life will be discarded because it wasn't deemed perfect.... a tiny life will be discarded because the parents don't want their child to suffer.... Let me tell you, if you haven't caught on by reading the other posts on my blog- Evan IS absolutely perfect the way he is, and he does NOT suffer from having Down syndrome!!   Ask any adult with Down syndrome and they will tell you the same.

Art Caplan, director at the center for bioethics at the University of Pennsylvania, shared his views and I absolutely agree with him.  Taken from the article linked above on Bloomberg Businessweek:

For many people this test makes it morally, emotionally and psychologically easier to have an abortion,” Caplan said in an interview....  Caplan said future prenatal tests may be able to indicate if the fetus had biomarkers for Alzheimer’s disease, or breast cancer, or other diseases. Those tests will raise questions about what issues will trigger potential parents to choose an abortion.  A survey published last month in the American Journal of Medical Genetics showed that only 4 percent of parents with Down Syndrome children regretted having them.

Ok, now I'm having real issues with these possible future prenatal tests.  It seems these people are looking for a crystal ball to predict the future, and termination would be the ONLY reason to perform these tests.  I can definitely understand the desire to know if your child has Down syndrome prenatally so you can be better prepared for the birth and upbringing.  The baby will benefit from therapies very early on, and parents can research other issues and concerns.  The health of the baby can be better monitored in case there are any heart or other defects that can occur more often in children with DS.  But yes, a big reason this test was developed to diagnose DS much earlier in pregnancy was to give parents more opportunity to terminate. So incredibly sad.

And seriously- what reason would you have to find out if your unborn child has a biomarker for breast cancer other than to terminate??  How many of us could have this biomarker and not know it?  Of course they can't determine at what age the child/adult will be diagnosed with breast cancer if at all.  How about asking all those affected with breast cancer- do you regret being born at all since you are now faced with breast cancer?  What if it is your mother?  Your best friend?  Most of us in society know at least one person who has had breast cancer.  Would the world be a better place if they weren't born?  Would their upbringing as a child be a hindrance or burden to their parents?  Of course not.  And I'm sure there have been plenty of people who have died from other causes before any knowledge of a breast cancer marker being present.

What if a new test came out to predict your child's post-secondary education?  How about a test to predict if they will experience extreme heartache in their life?  A test to predict if they will ever suffer a severe injury in the future?  Where will the line be drawn??

Yes, I have gotten way off the topic of Down syndrome, but this new test has opened a huge can of worms.  Without proper education on the accuracy of the tests as well as what life is REALLY like on the other side of receiving a diagnosis, I truly fear for the future and what society deems as acceptable.

31 for 21, Day 18: two poems

Soon after Evan was born, I found two poems that hold great meaning to me.  The first one I fell in love with was shared on Babycenter.com by another mama who passed along the name of an artist who had made a custom piece of art for her daughter's room.  I just had to have one for Evan, too!  I gave her the theme of Evan's room and she made this BEAUTIFUL hand painted picture.  The poem is known as "The Down Syndrome Creed".

After I had this made, I found another poem that I love even MORE.  It couldn't express my feelings any better had I written it myself- especially the line about praying for a child who sleeps all night!  God knows how many nights I slipped that into my prayers while pregnant with Evan after coping with his big brother who didn't START sleeping through the night until after his first birthday.... and then didn't consistently sleep through the night until he turned three.  Yes, three years old!  Whew.... Yes, God knew EXACTLY what he was doing when he gave us Evan, the sweet child who began sleeping through the night (and I'm talkin' 9:00 PM through 7:00 AM!!) at just 10 weeks. :)

Unfortunately, I don't know the author to extend my thanks for this poem.  I did have it printed in the front of Evan's photo book I had made since I NEEDED to include it somewhere special.

When you were but a tiny speck

Deep within my womb

Something happened to your cells

As life began to bloom.

A chromosomal anomaly

Is what the doctors say

But you are EXACTLY what I asked for

Each night as I would pray,

"Dear Lord, send me a happy child

Who will not grow up too fast,"

For I love the joys of childhood

And I wanted that to last.

"Send me a child who sleeps all night

And doesn't often cry,

A little boy with endless love

And a willingness to try."

That little extra chromosome

That number 21

Gave me all I ever wanted

YOU- my precious son.

31 for 21, Days 15 and 16

I feel like I've been neglecting my readers over here!  My 31 for 21 posts for days 15 and 16 can both be found on our adoption blog.  I wrote about the beginning plans for P's room today!  Go check them out:

Day 15: It's all about Awareness

Day 16: P's room

Still seeking more questions on Down syndrome- anything and everything.... don't be shy!  You can even remain anonymous!!

31 for 21, Day 14: Why I'm glad I have a child with Down syndrome! :)

I can't emphasize enough what a joy it is to have Evan in our lives.  I feel like I'm saying the same things over and over again about how awesome and amazing he is, and he truly has been and continues to be a blessing to our family.

I look back at the day he was born....

...that moment my OB came back into the recovery room to tell me the pediatrician's suspicions of Down syndrome.... I. Was. Devastated.  This couldn't be happening to me.... none of my prenatal screenings ever showed any suspicions of that extra chromosome..... I really felt like life was over.  This wasn't part of the plan!

 That first night alone in my hospital room was the most difficult ever.  I only had a quick peek of Evan under his oxygen hood before they wheeled my hospital bed down to my room (they actually wheeled my whole bed into the nursery to see him before taking me down to my room- LOVED the staff!)

That first night was SO full of worry.... what is life going to be like now?  How will the kids react?  How will Mike handle being the father of a child with special needs?  Will we ever be able to leave the house and lead a "normal" life?  How will we tell everyone?

It didn't take long to fall madly in love though.... I think all of 2 seconds really. ;)

As soon as I made it back down to the nursery to hold my precious baby boy, a weight seemed to be slowly lifted off my shoulders.

The more time I spent in the nursery holding him, the more I knew everything would be ok.  I spent as much time as I possibly could down there, aside from moseying back down to my room to pump or catch a few hours of sleep.

my little punkin on Halloween 2009 :)

It couldn't have been part of the plan.... It is so hard for me to type those words now, knowing what it's like "on the other side" and how absolutely wonderful it is to have Evan in our lives... how grateful I am to have the privilege to be his mama... life just doesn't get much better.  This may not be part of what I would have thought was my plan, but it absolutely WAS part of God's plan.  He definitely knew what he was doing when he brought Evan to our family.

How do I know this was all meant to be?  Well of course it's obvious that Evan is just one of the most absolutely amazing little guys in the world EVER!!  But I also know because...

He brought us to *P*.

If you would have told me ten years ago that I would be adopting a child from Eastern Europe who has Down syndrome- I would have thought you were nuts.  Yes, Mike and I have always been open to adoption, especially dealing with infertility trying to conceive our own.... yes, I  have always enjoyed being a part of the special needs community, volunteering for our local Special Olympics during my college years and teaching students of my own with special needs including Down syndrome.... but to go out of our way to seek the adoption of a little girl on the other side of the world who has Down syndrome?? Surely that couldn't be me.... But God knew.

He knew how awesome kids with DS really are.... he knew Evan would be the absolute light of our lives.  He knew that once we found Reece's Rainbow there was no going back.  He knew that once we learned about the fate of so many precious little ones on the other side of the world.... we would HAVE to act.  We would fall in love.  We would be determined to bring her home and love her as if she were our own flesh and blood. God knew.  And I am SO happy to have a child with Down syndrome!!