A Letter for Nayeli Belly Boo

Dear Booboo,
You are a beautiful, amazing princess!  I love watching you develop your sweet, silly personality.  I think it's great that you can play rough with your big brother, and soft and gentle with your little brother.  You are incredibly smart!  I can't believe you can count to 20 and say the seven continents and your just over two and a half!!


I love your high pitched voice and how you sing and dance all the time.  I love the faces you make all the time.


I love our time together now, but I also look forward to the future.  I hope I can always let you know how sweet and smart and special you are to me.  I know we'll have our conflicts, but I hope that we can always come to an understanding.


Your so little and already such an incredible little person, I can only imagine that you'll get better with time.

I love YOU Nayeli!♥

I Don't Know When

My dream of adoption feels like it's going to be put on hold for possibly longer than I thought. It's still my dream though. I don't know when I'll write again, but this post is just to say that I'll be back. :)

Six in a Month?!

Austin is going to be six on ONE MONTH!
My first baby is getting SO big.  I can hardly believe it!
He is such an experienced little person.
He has lived in California, Wisconsin and Kansas.
He rolled over when he was two weeks old.
He sat on his very own, from a crawl at six months old.
He didn't walk until he was 13 months old, but when he was a year and a half he ran face first into a bookshelf.
He needed stitches for that.
When he was little he wouldn't go anywhere without a ball.
Now he can sit and draw for hours and hours.
He loves studying Spanish.
He's fascinated by plants and bugs.
He's a good singer, and is usually singing or humming something.
He is an exceptional big brother and super loving and helpful most of the time.  :)
He is friendly and caring.
He takes pride in the fact that he has friends ALL over the country!
He is thoughtful and empathetic.
He is an animal lover.
He's a picky eater.
He LOVES candy and sweet things.(He gets that from his dad.  I try to keep him in check though.)
He says he doesn't like school, but he does very well in it.
I love looking back at where he's been, and I look forward to where he'll be.

♥I'm so glad to be raising such an incredible little boy.♥

Happy last month of being five Buggy!!!

A Letter to Kheaven (@13 Months)

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Dear Kheaven,
You're AMAZING!  Your smile and your laugh light up the world...  not just my world, but THE world.  You are strong and fast and sooo curious!  I love how you mimic the things I say and the faces I make.  I love the silly noises you find on your own.  I love that you are so ticklish that when I pick you up you laugh.  I love that having you in my life has made me grateful for more than I used to be.


Kheaven, I believe that you are capable of whatever you put your mind to!  You have been surprising me since the day you were born and I know that you will continue to surprise me.  I hope that I will always give you room to grow and learn.  I hope that I won't expect more than you can give, pressure you in any unhealthy ways, or make you feel like you're not right where you should be.  I hope that we are able to communicate our wants and needs with each other calmly and that I will truly hear the things you want/need.


I thank God every day for you.  You are one of my most treasured blessings.♥

Once Upon A Time...

There was a beautiful princess...

Such a beautiful princess was she!

♥

Another busy day ahead, but there's always time for pictures...  right?

:)

My Lovey Loves

I've been so busy playin' with these beautiful little people that I hardly can find the time to blog.

In the spirit of keeping up with the 31 for 21 challenge I leave you with more pictures.

 We know autumn will be here soon...  til then, short sleeves work.

The Camera Loves Him!

My baba will be six on Thanksgiving!!

 

 

 

 He's still a hammy man!

♥

 

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Something you may not know, in other parts of the world children with Ds are put in institutions if they are not adopted by the age of five.  There are people trying to adopt these precious children, and if you find it in your heart, you can help.

http://www.reecesrainbow.org/sponsorsader.html
http://thenewfaceofdowns.org/adoption/

Both links will bring you to a page where you can make a donation.  No amount is too small.  These children deserve a chance.♥

Sword fight!

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If you have another/other kids and are expecting or have already had a child with Ds...  Don't worry, they'll be accepted and loved just the same!

♥Love it!♥

Friday Photo Flashback: 1995

I haven't done a photo flashback in about a year I think?

Three kiddos keeps me busy.

***

This is my little brother, Isaiah!  

He's 16 now, but wasn't he so cute?! 

(Haha, he still is pretty cute. :-P)

It'd help me with comparisons if Kheaven had teeth yet!

They're not twins, but definitely related!

(You can tell more in other pix and in person.  If I had more time I'd find them, but this will have to do!)

A Memory

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Kheaven rolled over back to front for the first time a few days before his six month birthday.

We were visiting WI at the time.

These pix, courtesy of my mom, are not of his first time rolling over, but it was the day after.

TADA!

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“A funny phenomenon occurs when you have a child with Down Syndrome.
After falling in love with your baby’s beautiful physical features
especially those slightly slanting, almond-shaped eyes,
you feel an almost instant kinship and affection for other children with Down Syndrome.
Families with a loved one with Down Syndrome share a common bond
that’s difficult to describe.♥" 

I don't know why, but the statement above is true for me. 

:)

Another Flashback

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-This was written mid-October 2009.-

"There should be no more hushed tones, somber faces or sorrowful apologies. The news of Down syndrome ought to be delivered with smiles, congratulations, a hearty slap on the back and a look of envy from every doctor in the world."

Jill kocian

I remember the day my doctor asked if I wanted the Triple Screen Test done.  I said, “No, because it won’t matter anyway, and I don’t want to stress out for the possibility of having something be wrong, as I will not have an amnio done regardless.”  


Fast forward to the day my family welcomed our precious Kheaven Zane into the world, September 21.  I had been in labor for roughly two weeks and finally my body decided to keep progressing.  My J dropped me off at the hospital and went home to get some more rest with the other two kiddos in our bunch.  I made a few phone calls, and waited to see if this was in fact the day, as I had been in and out of the hospital for the previous two weeks.


It was the day! Six hours after being admitted to the hospital I gave birth to a beautiful 6lb 8oz boy with a head full of hair!  My child, and hair!  It just didn’t make sense, I knew something must be wrong!  (Just kidding.)


I cried harder when Kheaven was born than with either of my other children.  I conceived him a couple of months after a previous miscarriage, had been worried about miscarrying him in the beginning and I deeply wanted another child.  It wasn’t an easy pregnancy, but mine never were.  There weren’t any complications other than light spotting in the beginning though.


About two hours after I had Kheaven the doctor came in all befuddled.  *My poor doctor.  He mentioned that he noticed some of the soft markers for DS and that he would have another pediatrician come  and take a look at him.  He was all nervous and apologizing, and I was so confused…  No tests had been done yet, and every soft marker he mentioned was a feature on my partner or myself.  Cute little ears with kinks…  wide set, almond shaped eyes…  a little gap between his big toe and the rest of his toes.  The only thing that was of any concern to me or my partner was this cute little roll on his neck.


Well, I told the doctor not to worry, and that everything would be fine, until we had the test done there was no cause for alarm, and even after that Kheaven was still perfect.


Ten days later I receive a voicemail, from my doctor…  


A chill went down my spine and it was my first instinct to run the bathroom and vomit.  Although only four days earlier the doctor was thinking he had ordered the chromosomal test for nothing after looking Kheaven over when he was less swollen from birth the results came back positive for T21.


Doc asked if I was okay and if I had any questions…  Questions…  Um, YES I had questions, though at the time I had NO idea what they were.  He gave me the phone number of a college mate who also had a child with DS and said to call him as soon as I could, and he would be able to answer questions for me.


Even though I couldn’t quite wrap my mind around anything, two hours later I called the man and talked to him a little bit about everything.  I had missed that he had a daughter with DS from the convo with my doctor, I’m sure I missed a bit from that convo.  I cried for a few hours after getting the news, but eventually the tears subsided.


The next few days I cried myself to sleep, but during the day I was strong for myself, my family, my friends, and of course my two other children.  I didn’t know why I was crying so much anyway.  I knew I wanted my baby, knew I loved him more than anything along with my other two children.  Knew I was blessed just to have him when I thought I may not be able to have anymore kids.


Eventually I figured out I wasn’t crying because of the diagnosis.  I was crying because if anyone tells you your child is at risk for a number of problems, that they may face ridicule and more challenges than most people will ever have to face it’s a little disconcerting.


I joined online forums, found blogs, and kept in touch with my first contacts and kept reading everything I could…  I’m still reading.  I love my son so much and want to give him every opportunity to be the best he can be.  Everyone struggles somewhere in their lives, it’s just part of life.


Kheaven is very healthy as of now, he nurses well, lifts his head and even rolled over a few days ago.  He’s already amazing me, and I only hope for more.  He’s my Handsome beloved, gift from God and I will NOT take him for granted.

*Some people may think my doctor's reaction was not appropriate, that maybe it would have scared/upset me more because he seemed perturbed by the news.  I believe he responded that way because he had been my doctor through my miscarriage and new how much I loved and was excited for Kheaven.  I do hope the experiences he had with my family and the way we responded will encourage him in the future to not be so upset when delivering the new of a possible/positive diagnosis for Down syndrome though.

"Those who do not run away from our pains but touch them with compassion bring healing and new strength," Henri Nouwen observes. "If you will risk sitting in the solitude your heart to reflect on your story, then Jesus will meet you there. He will lead you along a path that restores your true self."

Looking Back

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Found some journaling I did a while back and thought I'd share.  Ten whole months ago.  Some things have changed and some are the same.  It's what I was feeling then.

1/6/10
At work a man came up and asked where to find ear drops.  He was shorter than average.  He had a jolly looking plumpness to him.  I couldn’t help but notice his almond shaped eyes, and the way he sounded when he spoke.   I knew  he had Down syndrome.  Only the second person with Ds for me to encounter at work.  I wanted to get out from behind the counter and hug him… lol…  oy.  I did abandon the customer I was already engaged with to help this jolly looking man.  I was completely distracted, hoping someone would help him find what he needed, and I was so happy when he decided to check out and came back through my line!  I probably could have talked to him all day.  Time stood still as I enjoyed and analyzed him.  He said he was about to head out to see the Globetrotters.  I was jealous.  I asked if he was going with on a bus, or with a group of friends, and he said, “No, I’m driving, I have to get back for work tomorrow.”  I was surprised, although I shouldn’t have been.  The transaction went to fast.  I still had too many questions.  I badgered the carryout Julie, she knew him, I wanted to know how old he was, what his job was… and more.  He looked older, and I wondered how old.  I had just read a few days prior the world record holder for someone with DS was 80, but before that it was 68.  This man looked in his 50’s.

I felt a little bad.  Why do I want to hug strangers?  I wouldn’t expect a customer without Ds to hug me, although some have…  but I have yearned for hugs from people with Ds when I have encountered them.  Maybe it’s because of the first lady I met with Down syndrome, Tammy.  We met in the grocery store.  I hardly remember having a hug that good ever.  It was perfect.  Or maybe those hugs make me feel like it’s going to be okay.  I like to have a tough exterior.  I KNOW everything is going to be okay.  Things are great now, but there’s still a stigma about the situation that sometimes it’s hard to shake.  In reality, everything is fine, but in “normal world” I should have issues…  Or not, but I heard from so many people since the beginning that I was “doing so well.”  I wondered, um, should I not be?  I mean, what’s wrong?

*I saw Tammy again, I excited said hi and went directly to her for a hug.  I don’t know her, but I love her.  I love her hugs too.

1/10/10
I read a comment beneath one of my friends pictures.  She was complaining about the way she looked, another friend tried to build her up by cutting down her brother…  Then my friend commented back, “At least I don’t look mentally retarded like him.”
Do “mentally retarded” people not look good?  I’m confused.  My son is gorgeous.  I was told at a conference about Ds, given by someone who has a son with and is a researcher of Ds that “everyone with Ds has some form of mental or physical retardation.”
I know my friend wasn’t trying to offend me or anyone else, but it stung.  It was my first encounter with this feeling.

Speaking of feelings…
I don’t like when people say “They’re (meaning people with Ds) the happiest people.”  --”They’re”--
Ick…  my son is an individual.
I don’t like that my ECSD teacher refers to people with Ds as Downs…  she does it A LOT.  At first I thought this wouldn’t bother me, ya know, when I was reading everyone else’s blog saying that it did.  People aren’t trying to be offensive… BUT, she’s a teacher, working with kids who have Ds and the parents of those kids.  She should know what is politically correct.

K’s ENT did the same thing, “Oh, I worked with the “Downs” in Oklahoma."
       Really?

Another thing I have a little issue with…  I have observed that while parents of kids with Ds advocate that they want their children treated like anyone else, and they (the parents) emphasize how their children are more like the typical developing child than not, and they emphasize their children are not “Down syndrome,” but they are individuals…  while they do all that it seems like some of them use their child’s diagnosis to get things.  They play the “Ds” card.  Kheaven is only three months… I may do it someday, but I don’t know if I think it’s right or not.
I also saw a status update that got me thinking… “I love someone who has Down syndrome.”  -- I thought about copying and pasting it, after all, I love someone with Ds too!  But I thought about my other updates…  the things I say…  I would NoT say that.  I would just say I love Kheaven.  I would not single out my children, or anyone else with a differentness in a status update… I would not say, I love someone with glasses, although now I think maybe I should to get the update poster thinking… I would not say I love someone who has IBS…  you get my point.  So yes, I do love someone with Ds, but I just love him…  either way.  It's the same with my other kids.

A break from the negativity… Last night I worked with a woman who has a background in early childhood education.  I told her about K having Ds and she was cool…  After I talked for a bit she said, I’ve worked with some kids who have Ds and they’re not the “happy all  the time” people always say they are, they have normal feelings and get upset like anyone else.
            Yep.