World Down Syndrome Day

Hey, so I know I’ve kinda been absent from blogging, but I have good reasons!  I moved from CA to FL, lived with our friends for a few weeks, and finally bought a house!  So, for all you people who can move and travel and keep up with their blogs, kudos to you!  But, did I say we bought a house?

Yep, we are officially home owners and I’m loving it!  Our house is perfect for us and has a lot of room.  I’m down to the last few boxes to unpack and then I can decorate!  But hey, it’s so hard to do those things when the beach is calling!

SO, today, I wanted to share something else.  March 21, just happens to be World Down Syndrome Day!  Now, for the ones who share the designer gene, I’m sure I don’t have to tell you why this day is important.  However, I wonder how many of my other friends know why this day is important…OK, I should say, why March 21 was chosen to be World Down Syndrome Day?

AND in celebrating this day, I want to send you to another blog.  This person has been a constant since Lillian was born.  She’s given me great advise and a ton of support!  Now, in return, I want to do the same for her.  She and her family are adopting!  A little boy who needs a home immediately!  As, people are coming together to show her support, I’m here to help her by running a fundraiser in Alex’s name. 

Yeah, I know, you didn’t come here asking to give your money away.  But I’m asking you.  In our small community, there are many many families who are in the process of adopting or has already done so…like my friend Jennifer who adopted Sofia (isn’t she beautiful!)  We all know the cost involved in adopting are astronomical, but all we can do is ask for support.  You wouldn’t believe how many forever families have been brought together by simple donations from online fundraisers and from blogging.  It’s amazing, and all of their stories are amazing!

So, if you are willing please go to Christie’s Blog and participate in one of her giveaways.  OR, you can check out my AVON fundraiser for them and help.  AND, if you do, please remember to use the promotional code “4ALEX” at check out. 

31 for 21:10

So, tonight is another picture night.  I’m in the mood for pictures.  But I have to explain that I’m not the studio loving type.  I like realistic, up close and in your face, having fun with color type of pictures. I’m not a photographer, but I wish I was.  But I’ll share some of my favorites.

AND…to make this post a real 31 for 21 post I’m gonna throw in some Down syndrome Facts.

Down syndrome shows no favoritism.  Whether you are a blue collar or white collar family. Black family. Asian family. White family.  Latino family.  Middle Eastern family…the list goes on.  Down syndrome can present itself to every type of family out there.  Even the mixed up families, like ours.

So, here’s to my own personal lovelies.

us

View Full Album

BUT, if you really want to see some fantastic photos, go visit Erin’s photo blog.  AMAZING. 

31 for 21:3

If you have never met a person with Down syndrome or a family raising a child with Down syndrome, it is understandable that you may be at a lost for words.

So, to clarify some things (the ones that I can think of for now) are:

1. Please please please try not to say that our children are angels and a blessing.  Although, you might be sincere, but truthfully, all my children are angels and blessings.  Having Down syndrome does not make you become soft and gentle, always smiling and giving.  Because if that's the case, then Lillian does not have Down syndrome :)  Her brother and sister can vouche for that!
2. As much as it doesn't make any sense to you, please refer to my child as a child with Down syndrome.  I know that my child has Down syndrome, but she still is a child first (people first language)
3. Does she have a mild case of Down syndrome?  Ummm...well, mild compared to what?  You either have Down syndrome or not.  Whether she could be high functioning or not, Down syndrome does not come in ranges.
4. And never ever say, "I'm sorry".  To me it sounds like you think we are living such a poor and  unhappy life.  But, what I've learned from Lillian is that you choose to make your own happiness, and that I could never be sorry for.

So, really all I'm asking is for you to just be happy for me.  Tell me that my children are all so beautiful, smart and kind.  With that, you can't go wrong. 

My life is so good...I can just chill!

Final Thoughts to the end of 31 for 21

It is the end of the challenge and I'm so happy I made it through!

In reflection, this challenge is sort of like my life.  Everyday there is some sort of challenge.  But I make it through the day and I'm just fine.  My life will be just fine.

So, I'm leaving you all with this beautiful montage.  This montage just shows that living with Down syndrome is no biggie.  It's just all part of life and Life can be beautiful!

Photo and video editing at www.OneTrueMedia.com

or click here

I finally asked!

Today we were invited to a school Renaissance fair in beautiful Napa Valley, CA.  The day was perfect, sun shining, nice gentle breeze, great atmosphere.  My kids had such a terrific time and so did I!

Well, there she was.  This tiny little girl with the blondest hair just running around.  She was the picture of a California baby!  When I caught her eyes, I just knew she and Lillian had something in common.  But what do I do?  Do I say something or just walk away?  With a little pushing from Bobby I went out looking for her mother and I found her!  Thank God she was so NICE!  It was great to finally break from my shell and ask, "Does  your child have Down syndrome?  OH, so does mine!"  Her daughter, who is 2 1/2 years old, and the youngest of 4 girls, was running around like she owned the place.  She was just so cute.  

I was just proud of myself for stepping out of my comfort zone and excited to finally meet another family with a young child with Ds.

Tomorrow I will post pics.  We really did have a terrific time.  Many THANKS to our new friends and neighbors, Keith, Vikki and Shane!

The Bestest Sister Ever!

So, this week, I've been tauting the praises of my dear sister, Sophia!  Again, I'm so proud of her and her legs for running 26.2 miles!  But she does something more than that, something that is so totally unexpected.  My sister bought a ton of clothes of the girls.  But on top of that she sends me a generous gift card to my fav store Old Navy!!!  Now you would think that I should have treated her to something spectacular, but she beats me to it!  And tomorrow, a package for Charlie will be arriving.  Can there be a better sister...auntie than that?

I love love love my baby sister!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Down syndrome Fact:

Quality of life for individuals with Down syndrome continue to improve.  Infants and young children with Down syndrome are now able to receive Early Intervention to greatly improve their quality of life.  Not so long ago, the majority of people with Down syndrome were institutionalized and kept hidden.  Currently, a diagnosis of Down syndrome does not mean doom and gloom as we now see children with Down syndrome in mainstream classrooms, graduating from high school and college, living on their own, maintaining a job, and some who are happily married.

Crazy Mommy needs!

We have officially transitioned Lillian to her crib and out of our room.  Lillian and Katie will now be sharing a room, since we only have a 3 bedroom house.  Last night, was the first night and I'm pretty sure Lillian knew what was up, because she did not sleep quietly at all.  At one point, Katie left her room because it was too loud from Lillian.  I felt bad...Katie lost sleep because we chose to transition her on a Sunday night instead of the weekend.  What was I thinking???  

Don't misunderstand though.  Lillian slept in her bassinet in our room not in our bed.  However, there has been many times she ended up in our bed :)  I tend to allow my kids to do that.  Sometimes, I crave their hugs and warmth.  I love feeling Lillian playing with my face in the morning.  I don't even mind having Charlie sleeping on my back.  On the weekends, Katie will crawl in bed with us too, but she's getting big.  Bobby got mad one morning and left the bed to all of us and slept on the couch!  He's not the family bed type of guy...hehehehe.

On one of my mommy boards, another mom was sharing with us how her child was feeling sick.  I had to share that I secretly don't mind when mine feel a little under the weather.  As my kids get older, they don't want to cuddle and snuggle with me.  But, when they don't feel good, they want mommy.  They snuggle and cuddle me.  I know, I'm not right for that, but it's one of those feel good feelings that I wish my kids would never outgrow.  Now that I know that Lillian is my last and finaly baby, I'm taking advantage of everything baby.  I can't believe that she's almost 8 months old, and that I'm already missing newborn stage.  I'm just waiting for my sister to hurry up and have babies, so I can quickly get over my baby needs.

Down Syndrome Fact for the Day:

It doesn't matter what race, ethnic or religous background you come from.  Your chances of having a baby with Down syndrome is all the same as every other woman in your age group. But I like to think that Lillian is the only half white, quarter black and quarter korean baby with Down syndrome in the world.  I just like making her extra extra special :) 

My Sister and the Chicago Marathon

Right now, at this moment, my dear sister is sleeping and getting lot's of rest.  Why?  Because she will be running in the Chicago Marathon tomorrow!  She has been training for this six months now!  Personally, I think I rather endure another 32 hours of labour with Charlie than run the marathon, but if anyone can do it, I know my sister can!  I will post pics tomorrow.  My dad is there now representing the family...I'm just so proud of her!!!  Go Sophie!!!

Down syndrome Fact:

Actually, this is more of a myth buster.  There are many who believe that people with Down syndrome are always happy and content.  Well, my dear friend's daughter, who just so happens to have Down syndrome and currently a teenager, is not always happy and content.  She can be just as bossy and stubborn like every other big sister in the world.  And Lillian will get very upset when mommy walks by her and not acknowledge her presence.  Every child/teen/adult with Down syndrome will have their own personality like you and I.  And it may or may not be the Happy Content person that has always been stereotyped.

Down Syndrome Fact

I am borrowing this from a blog and babycenter board friend of mine. I got her permission first (Thanks Jennie!!!), never want to step on anyones toes you know.  I just thought it was one of the most interesting facts, and one that I wasn't aware of:

"Down syndrome stuff: I mentioned in yesterday's post that individuals with Down syndrome are much more likely to get leukemia than the rest of us. Someone posted a comment (anonymously) which I think you all will find interesting so I'll post it here on the "front page" since not everyone reads comments:

However, kids with Down syndrome also have a much higher CURE rate for leukemia. They also have a much lower rate of other cancers. For example there is only 6 cases of lymphoma in people with Down syndrome... in the last 30 years. They very rarely get anything other than leukemia. When they do get leukemia they respond better to the medication. There is something on the 21st chromosome that helps them fight cancer. Researchers are looking at people with Down syndrome to find the cure for cancer. So while they have more of a risk of GETTING leukemia, far more of them BEAT it than typical kids. 90% for typical kids vs 98% with kids with DS for ALL... and 85% for typical kids vs 95% for kids with DS for AML. I think it's a trade off that's worth it. :) More likely to get it, but also more likely to beat it. Not to mention, helping find the cure for cancer"

.

Me me me me me!!! It's all about me!(well sort of)

I'm being a  little selfish today.  I figure I better start early just in case I have a rich family member out there reading my blog.  Today I want to post my Christmas Wish List:

1. $50,000  enough to pay off my debts and to put a little bit of money in my rainy day account :)

2. A very nice double jogging stroller, you know, it's for my health.  I need one that can handle Charlie and be delicate enough for Lillian.

3. A new SLR digital camera, like the Canon - EOS Digital Rebel XS 10.1-Megapixel Digital SLR Camera- Silver(I wanna start taking my own professional shots of my kids)

4. Laser Hair Removal.  Enough said on that subject.  It just needs to be done!

Alright...that's enough with my wishes.  On a positive note, I worked out today!  I haven't been to the gym since I left Washington and working out felt great!  I really need to focus on my weight and becoming a healthier mom.  Besides, if I can't take care of me, how can I take care of my children?  Both Charlie and Lillian were wonderful at the gym.  I hope they keep it up!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Speaking of Charlie, he ate his dinner tonight!  Now, I'm wondering if he likes Daddy's cooking better than mine???  

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A very good friend of mine had asked me a question about Down syndrome in an email.  She wanted to know what it was that made the doctor's suspect that Lillian had Ds when she was born.  There were a few things:

1. The sandal toe, or v shape space between her big toe and second toe

2. Her upward slanted eyes  Although my mother insisted at the time Lillian has eyes like her.  My mother is Korean.

3. The simean crease on one of her palms

4. The extra skin on her neck, nuchial fold

5.  The heart murmur which lead them to believe she had some sort of heart defect

So, those were the main things.  And of course, it was confirmed after her tests all came back.

Down Syndrome Fact:

Down syndrome is a chromosomal disorder caused by an error in cell division that results in the presence of an additional third chromosome 21 or "trisomy 21".  There is also Mosaic Down Syndrome and Translocation Trisomy 21.  They all deal with chromosome 21.

This picture was taken at a museum in Seattle.  I found it interesting about how much information chromosome 21 holds!  Can you imagine how many extra pages they had to add to talk about Trisomy 21!

I think I will start posting a little Down syndrome fact daily.  

To say or not to say...

Yesterday, a neighbor invited us to take the kids to the pool.  Why not, the kids love being in water and it was a free activity.  So, for 4 1/2 hours we played and had such a good time.  Not many people were there.  There was one couple who came and they were so nice.  They weren't bothered about the kids splashing and talking to them.  Because I couldn't get in the water, Lillian and I were walking along the side just watching.  The man came over to chat a little and Lillian just couldn't get enough of him!  He was so gentle and so loving towards her and she just ate it all up!  He didn't look at her differently.  He didn't stare.  He was honestly just enjoying her and her cuteness.  He was playing with Lillian like she was a baby...a very typical active baby girl.

In the mean time, I'm thinking to myself and saying, "Should I tell him or not?"  Because so often, I do.  I go ahead and get it out there before the questions start.  But this time was different.  I let Lillian just be Lillian.  A baby.  Nothing more than that.

Just a quick note

Something fast for today, because I didn't want to not post anything or I wouldn't be able to complete this challenge.

1.   Baby Mama is hilarious

2.   Get smart is hilarious

3.   Trying to teach my 7 year old how to crochet ... not hilarious

Goodnight and farewell!

Thank GOD for Lillian!!!

Lillian in her room...a few days before birth

Lillian 8lbs 14 oz

At this point, I still had no idea what was going on.  I thought she was perfect.  It wasn't until I was in recovery that I was told they suspected her of having Down Syndrome.  Bobby was the one who told me first.

This is a pic of me holding Lillian for the first time.  I held her for five minutes until they flew her to another town that had a NICU.  Lillian has a VSD, but what kept her in NICU was her Upper Pulmonary Hypertension.  I was still confused about the Down Syndrome.  I kept asking what did I do wrong? Bobby explained to me that it was nothing that I did.  The pediatrician there had a good two hours with him while I was still in surgery.  They gave him a brief rundown of their suspsions of Lillian have D.S. and why.

Lillian being prepared for flight

Here is Lillian right after Bobby met her at the NICU at Madigan Army Medical Center.

Look Ma...I'm getting better!

Because Naval Hospital Bremerton did not have a NICU, Lillian had to be flown to Madigan Army Medical Center, which is 55 miles away.  My mom who was with me at this time went back home with Bobby to get the kids and my sister to drive to MAMC to see Lillian and speak with the doctors there for further detail.  Because I was still recovering from the c-section I wasn't able to go.  It was very emotional for me at that time.  I remember feeling angry and disbelief.  Then there was pity and self doubt.  I questioned GOD, asking him why me?  GOD why...what did I do so wrong?

Looking back, I know why it was me.  I was meant for Lillian.  Lillian chose me because she knew that I would be the best at taking care of her and Love her unconditionally.  She knew that I was able to see past the diagnosis and see the baby and person she would grow up to be.  She knew that her daddy would protect her and love her for all that she is.  Lillian knew that her brother and sister would adore her and love on her like every baby sister should.

I thank GOD every day for letting Lillian choose me.

Day 2...here I go

So, my topic of discussion today is using the "retard" word or "retarded" word.  

I learned today that some people just don't get it.  I wanted to share with a group of new friends that October is Down Syndrome Awareness Month and I myself have a beautiful, perfect, baby girl who just happens to have Down syndrome.  I also wanted to let them know how demeaning and hurtful it is when I hear the "r" word thrown around.  Apparently, it wasn't welcomed.  My message was deleted.

My intentions were not threatful.  I was not preaching.  I just wanted to share something personal about me.  I just thought it would be nice for all of them to know how that word affects me, especially when it is used in a negative way.  

I was deleted.  Gone forever.  The organizer of the group took it away.

My blog though...it'll still be here.

And...we're here!

I'm finally a blogger! Well, sort of. I guess I need to see how successful of a blogger I am before I actually say I'm a blogger, but I'm going to try!

Here is a little bit about my family...my husband and I have been married for almost 8 years now. He's a Submariner in the NAVY and just became a Chief Selectee!!! We have three (sometime terrific children). Katie our oldest is a sassy know it all 7 year old! She's absolutely beautiful and loving to be around. Charlie our middle child...well, is Charlie. He just turned 3 and I thought the 2's were scary, I'm now thinking the 3's are scarier!!! Lillian, our baby, is just perfect! She's a very typical 5 month old, but with one extra chromosome! Lillian was born with Trisomy 21 or Down Syndrome.

Since, her birth, I've learned a lot about life and the gifts we are given. I make sure that all my gifts are taken care of and loved on continuously! I truly believe that GOD gives us special gifts because he knows that we're strong enough and courageous enough to take proper care of the gifts in our lives.