31 for 21, Day 20: I have been forever changed... and an update!!

***Update on our adoption!!!*** I just received word from our adoption agency that our dossier is to be submitted to the government officials in P's region TOMORROW!!! :)) We should receive our travel dates for our first trip to meet her within the next two weeks!!! :)) SO excited!!

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Day 19's post can be found on our family blog HERE on the new prenatal testing available.  This post is somewhat related, and I promise it will be my last on the subject.  It's a controversial issue, and I'm not fond of debates.

This is another one of those posts that has nothing to do with Down syndrome.  I have been completely moved by a documentary in ways I didn't know were possible.  I'm hoping more and more people will watch and be just as moved also.

Well, if it weren't for Down syndrome this documentary wouldn't have come to my attention due to all the hype about the new prenatal test on the market which I've been discussing.  When I first started watching the video, I thought this was going to be about Hitler and people's views of the Holocaust.  But it turned into so much more, conveying such a powerful message.  Please take a few moments to watch- yes it's a little long, but it is worth every minute I assure you.  I urge you, I beg you... please watch.



As I stated in a previous post- I thought I was pro-choice when it came to the whole abortion debate.  I could never have one myself, but I didn't believe it was my place to tell another woman she can't.  Of course I have expressed my concerns regarding women terminating their pregnancy due to a DS diagnosis, but how could I expect a woman to carry a baby to term if she doesn't have the means to provide for this child or if she was raped?  Of course adoption is always an option, but that whole mentality has been completely blown out of the water for me.  Please share your thoughts regarding this documentary, and if you agree with the message I urge you to continue sharing it with others.

31 for 21, Day 16: P's room!

Before I get started on today's post, I need to give a shout out to one of the sweetest people I've had the pleasure of meeting online in just the past few days.  Jane has a heart of GOLD and it took me all of 5 seconds to learn this.  She advocates with all her heart and soul for the waiting angels of Reece's Rainbow.  You can find her blog by clicking her name above or from one of the two buttons in my sidebar- Forget Me Not Fridays and Sharing Sundays.  Jane was SO so sweet to include P in her blog post for today!!  I am so humbled. <3  Thank you SO much, Jane, for all  you do not only for us but for all the precious littles on Reece's Rainbow.  Jane even has a BIG giveaway going on right now- you can find all the details HERE!!

Ok, on with our regularly scheduled blog post..... ;)

We are going to begin working on P's bedroom very soon!! :)) Sooooo excited and can't wait to fill it with all things girly!  Right now it's a boring blah spare room.... it started out as an office/computer room when Mike and I first moved into the house, before we had kids.

This photo was taken about 10 years ago- don't even ask me what the mess is all over the floor!

Then it was converted to Justin's bedroom when he was first born, decorated in an underwater theme.

 


With the surprise news of Evan on the way we built an addition over the garage, adding two rooms since that worked better with the floor plan than just trying to add one. So, with the addition Kaylin and Justin each got new rooms.  Evan was put in Kaylin's old room which was my favorite nursery, decorated in neutral colors (though shame on me for not taking any pics yet since Evan has been born, and he is up there napping as I type this so they will have to wait a bit longer), and Justin's old room was going to be converted back to an office since we had to remove the closet to extend the hallway.... We slapped some plain brown paint on the walls, moved in the spare mattress and box spring, collected odds and ends that didn't find a home elsewhere, and called it a day.

But now it has much more exciting plans ahead!  

Cheerful Whisper is the color we've selected for the walls in P's room. :)  I was just browsing the Wallies website- I decorated Kaylin's new room with some super cute hearts and flowers from one of their collections (purchased at Home Depot).  Found these adorable fairies while thinking it would be fun to keep a butterfly theme for P's room.  These are so cute!!

These butterflies are really cute too...

I am getting more and more excited.....Can't wait to get started!!

31 for 21, Day 15- It's all about Awareness!

If you missed the post for Day 14 you can find it on our family blog HERE on why I'm glad I have a child with Down syndrome! :)

A great article was posted at LifeNews.com just two days ago and I want to share it with my readers.

http://www.lifenews.com/2011/10/13/down-syndrome-awareness-helps-stop-abortions-on-special-kids/

Now I will note here that I have not been one to be adamantly pro-life.  While I could never myself go through having an abortion, I don't feel it is my place to tell another woman that she can't.  It is her right to choose, and her life-changing decision she will have to live with throughout the rest of her life here on earth.

That being said, it makes me sick to my stomach thinking about how 9 out of 10 women who receive a prenatal diagnosis of Down syndrome feel they have no choice but to abort their babies.  I believe a huge factor in these awful statistics is the physician's delivery of this diagnosis.  Many doctors to this day still encourage parents to terminate when they receive a Down syndrome diagnosis.  I want to walk into these doctor's offices with Evan in tow, and wake them up to reality!  I am willing to bet a large amount of money that these doctors' lives have never been touched by someone with Down syndrome.  I am willing to bet they have never had any kind of social interaction with a person who has Down syndrome.  Before they are given the power to guide someone's future, they should be fully educated.  Perhaps go back to school and earn a degree in the knowledge of Down syndrome and what life is REALLY like.  Hmmmm... maybe I should start a class right here in my house!  Down syndrome 101 ;)  I will have to work on that syllabus....

The article above best states these concerns here:

Certainly some are, but study after study has found that up to half of all women accepting prenatal testing did so without making an informed decision, and that half did not expect they would have to decide whether to abort following a prenatal diagnosis. To his credit, Caplan recognizes that prenatal testing can result in uninformed and unexpected decisions to terminate, due to medical professionals and general society often having “nothing good at all to say” about DS. Indeed, one study has found that almost a quarter of physicians actively urge abortion, or emphasize the negatives about DS in order to encourage it. Even for those committed to non-directive counseling, a majority of physicians and genetic counselors have said that they would abort following a prenatal diagnosis for DS, which no doubt affects how a diagnosis is presented. Other recent studies also have found that a significant percentage of adults, youths, and physicians still hold outdated views about DS and would prefer that children with DS were segregated from, rather than included in, the community and typical classrooms. Therefore, those who choose to abort often are seeking to avoid an inaccurate, uninformed, and overly negative view of a life with DS, which is not supported by the current research.


And I have found these out-dated stereotypes still exist even in my children's elementary school.  I've had a few conversations about Evan with one of the teachers who has an adult brother with DS.  She was super excited when I first told her about Evan's birth, and was very positive about the whole diagnosis thing, sharing how her brother holds a job in a neighboring town.  Yet the past couple times I have seen her, she has questioned me about where he will attend school... and she always seems surprised when I say he will attend right here in the "regular" elementary school.  This really caught me off-guard since #1- her obvious connection to DS with her brother, and #2- there is at least one other student in the school with Down syndrome.  I guess she is just thinking of her brother's educational experiences over 20 years ago... I don't know.  But hopefully it won't come as a shock when Evan is sitting in her class a few years down the road!


It's all about spreading awareness.... Down syndrome isn't the end of the world.  It was merely the beginning of mine.... <3

31 for 21, Day 13- more questions! :)

Yay!  New questions!!  Here's the first:


Erin B said...
Does Down syndrome occur equally across all races? It seems as though I mainly see people of caucasion ethnicity with Down syndrome. 

Good question!  Down syndrome is not related to race- it occurs across the board, but according to statistics the number of live births does vary slightly by race.  The following is taken from the Texas Department of State Health Services:


Down syndrome prevalence is known to vary by race/ethnicity. Hispanic infants were found to exhibit higher rates of Down syndrome than other infants, even after differences in maternal age were considered (CDC 1994). Rates for Hispanic, white, and African American infants were respectively 11.8, 9.2 and 7.3 per 10,000 live births (CDC 1994). This may be due partly to differential use of prenatal diagnosis services. Racial composition of women who use prenatal screening services varied from the racial composition of the U.S. population (Meaney 1993), though racial difference in usage was not found in another study (Naber 1987). Also, use of prenatal diagnosis services and abortion significantly reduced the birth prevalence of Down syndrome among white women but not among women of other races in Atlanta (Krivchenia 1993). That was not supported in a Los Angeles study ( Wilson 1992). Racial differences may also reflect differential under-diagnosis of the defect at birth. 


Sadly, 9 out of 10 babies given a prenatal diagnosis of DS are aborted. :( I can't begin to express how tragic this truly is.  I sit here snuggling my precious Evan, thanking God each and every day he gave me this precious gift, how LUCKY and BLESSED I am to have Evan in my life, and many people are throwing it all away.  So, the fact that so many babies blessed with designer genes are aborted will skew statistics also.  Add in new prenatal testing and the rates will rise even more I'm sure. :((


And our second question:


Sue said...
A question for you -
I have been supporting a few kids on RR this year and learning more about DS since I had a high liklihood of having a baby with DS this year (it ended up she did not have DS). Anyway, this past Sunday a mom at my church and her daughter (about 6-7 years old) were admiring my baby and trying to get her to smile, etc. I have had the feeling the little girl has DS but am not sure. I've studied her face in our church photo album but can't tell. Is there a way to ask the mom in a diplomatic way or should I just ask our pastor?

Also, we have a little boy in our son's boy scout troop with DS. He started out in the same grade as my daughter and is now 3 grades below that (not advancing). Again, I want to strike up a conversation with the mom and ask how her son is doing and if I can be of any help to her (not sure how, just want to offer because she sometimes looks tired -- but aren't we all!). She seems sort of isolated at the meetings and I'm never sure what to say to her. Any suggestions?



Since my Evan is so young, I wasn't sure how I would feel as a parent of a school age child with DS.  I posed the question to my fellow DS mommies at Babycenter.com and really liked this response:


It depends on the reason for asking. To me, it sounds like the person is interested in Down syndrome and probably wants to ask questions, but is worried about offending someone. As shema4t4 said, being yourself and being friendly is all that's required.

In the first case, it just sounds like she's curious. If she feels like she has to ask, asking the pastor is a good idea. He will probably know what the mother would want him to say, and if her daughter doesn't have Down syndrome, she'll have avoided an awkward moment. Not mentioning the scrutinizing of the directory picture is another good idea. :( She might consider not asking, and letting it come up or not.

In the second case it sounds like the person doesn't know how to start to be friendly, and it's good that she asked, because "How is he doing?", the question she proposed, is not a good question. A parent can hear that as an inquiry into how the child is doing in school/milestones, etc. That's personal, and parents should be in charge of opening that subject if they want. I find,from people who already know us, "What's James up to lately?" is a better question, because I can answer it any way I want. Since she doesn't know the mother well, she needs to consider whether she wants to be a friend, or whether she just wants to ask questions/offer help. If she wants the first, she should, as with any acquaintance, find a common interest. Book recommendations are something I often ask for, because I love to read and I know I'll follow through--I'll say I've just finished [blank] and am looking for something new--does she have any recommendations? No special approach here, just what usually works with anyone else. If she is feeling isolated, and the person is good friends with one of the other moms, after she has talked with the mom of the child with DS, she could introduce the friend and mention something they have in common.

I agree that offering help, kind as it may seem, may not give the right feeling to the mother. She almost certainly doesn't want to be pitied, even if she does seem tired. :) There are things she can do to help, though, that will be truly nice. Taking pictures at Scout outings and making sure to get a good one of her son and sending it to her, with "So glad [blank] is in Scouts with [son]. I love this picture of him!" and meaning it. Doing the same for other boys in the troop so she doesn't feel singled out. Making a point of greeting all the other boys in the same way. Being interested but not nosy. I think it's cool that she asked rather than bulldozing ahead. Some days I don't mind frank questions and can answer them easily and nicely, but I don't always feel like it. Everyone probably has a different idea of what would work best for them, but I think being normal and friendly is good advice, and works however bad or good a day we're having. :)

I totally agree with the above suggestions- just be yourself and try to strike up casual conversations that are not focused on DS.  


Thanks so much to both readers for asking great questions!! I am truly enjoying these- keep them coming!! :))

31 for 21 Day 12: i have a voice

Powerful words.  Stunningly beautiful photos.  All God's children.



Please please ask  me some more questions about Down syndrome! :)

31 for 21, Day #11- Perspective

This post was eye opening, and oh so true.  Please take  a moment to read.

I still browse through the little cherubs on Reece's Rainbow who are still waiting; in another month I will be advocating for one little beauty in particular as the Angel Tree project gets started.  You too can sign up to spread awareness and help a little one find their forever family!  There are still 45 little angels who need a Christmas Warrior- simply someone to spread the word about them and try to raise some donations to their grant.  You don't need a fancy giveaway, just simply advocate for them and do what you can.  Every little bit helps, even if it's in the form of prayer alone.

While looking through the little angels waiting, of course the first to draw your attention is the photo.  Since these children aren't surrounded by loving families and don't always have the blessing of a full tummy- it's not always going to be easy to coax a smile out of them for the camera.  I'm sure they don't know what a camera even is, and how often do they have reason to smile?

The next thing to look at- medical condtions.  Of course there are diagnoses which are quite serious, but there are also plenty with long medical terms that are fairly common and highly treatable.  Yet when strung together, it sounds like this child has too much going on and gives prospective parents doubts about whether or not they will be able to care for a child with what could be serious needs.

Then there are diagnoses that are found to be false- one family found this to be a blessing though, for had the child been properly diagnosed, he probably wouldn't have been available for adoption due to this particular country's requirements for special needs adoptions.

Next, you read on about their milestones they have and haven't met.  Do consider that these records are quite often outdated.  Also look at how old the child looks in the photo compared to their actual birth date (though children in orphanages grow slower and often look quite younger than their actual age).  Sometimes updated photos are available but written records are not until you've committed to a child.  Sometimes like in our case, they aren't available until at least the dossier is submitted but possibly not available  until we travel to meet her in person- this goes for medical conditions also.  We have received no information on Pauline aside from what was listed on her RR page, which wasn't much at all.

So when looking through these little sweethearts on Reece's Rainbow- do remember they are children first, and had they been your biological child, I'm sure you would do whatever possible to care for the love of your life.

These children deserve to be the love of someone's life.  Please help spread the word.  You'll be hearing more about this little love muffin next month. ;)

Giveaway WINNERS!!!

Yayyyyyyyy the fun part!!!  I entered all names into a spreadsheet... an enormous spreadsheet, for there were 1,847 entries when all was said and done!!  I entered names in the order in which the donations were made, and then added entries from comments left for sharing the giveaway on Facebook, Twitter, or blogging at the end.  I also included a couple names who donated through the Paypal button directly to our FSP instead of through the ChipIn just in case they meant to enter the giveaway also (all winning numbers did happen to enter through the ChipIn).  I used the website http://www.random.org/ entering 1 as the minimum number and 1847 as the max.  Our winners are:

iPad2: #726 Joyce G

Tastefully Simple Gift Basket: #68 Ruth E

Yellow and Gray Damask Necklace: #1267 Wendy B

Ombre Purple Scarf: #1493 Ronald C

Infinity Scarf: #1227 Donna M

Congratulations to all the winners!!  And a HUGE thank you to EVERYONE who contributed- thank you's will be sent out this week. <3  You truly have made a difference in the life of an orphan.  Make sure you save your confirmation e-mail from Reece's Rainbow for tax purposes.

I will send an e-mail out to the winners requesting mailing addresses for your prizes.  Please let me know if you didn't receive it.

With the two additional donations to our FSP during our Giveaway, the total amount raised was $3,980!!  God is good.

We are still waiting to hear from P's country with travel dates for our first trip- crossing our fingers for the end of October, but prepared to receive a date in November.  This waiting game is tough!  We love you, babygirl, and can't wait to meet you and wrap our arms around you!