Happy (BELATED) BIRTHDAY - To Meee

Somebody rained on my parade yesterday… but had my day continue to have been full of sunshine and birds tweeting, this is how yesterday’s post was suppose to have gone (please note, today is DAY 7):

         

Day 6 of this 31 posts for 21 (T21 – AKA Trisomy 21 – AKA Down Syndrome), where I post every single day in the month of October (October is Down Syndrome Awareness Month).

And not only is it JUST day 6, it is also my 29 28 BIRTHDAY! Or something like that. Yup, it is!

And another thing today has been is a GREAT day!

I woke up this morning, and I didn’t have more extra wrinkles than the day before! A gray hair didn’t just stand up straight in the middle of my head. And I definitely do not look a WHOLE year older than yesterday.

And I was ALIVE and in great health, and so where my kids and my husband!  

Every single morning, it is a ritual in our house, from my bed I yell out “GABBY, WAKE UP” .. every morning, she replies with a sleepy, “ok – I’m up” but today, without sparing me second after my holler, she replied in her usual sleepy voice “Happy Birthday Mom”.

My little girl loves me. (Both of my girls love me.)

Andrea made me a beautiful birthday drawing straight from her heart and Gabby gave me a card. I was unable to open it till I was at work. Once I was comfortably sitting at my desk at work, I carefully opened the white envelope with lip gloss kisses on the front… that now looked like grease stains. …It filled my eyes with lots of happy tears.. You know what, I think I (and daddy as well) have done a great job raising this kid.

Today is full of a lot of “and’s” that is for sure.

….AND I even made the perfect choice of wearing stretchy pants today, cause guess what, my dear friends (they are more than just coworkers) made sure to keep me well fed today!

I was brought a huge yellow cake with chocolate frosting made  with real Hershey’s!!! AND I was taken out to lunch and overstuffed! AND my coffee was brewed and ready to go, for both the morning and afternoon coffee breaks!

…you hear that, that is my heart, full of love, beating rapidly with lots and lots of love.

I misplaced my wand today. That was a real bummer. I think someone hid it from me so I wouldn’t be sneaky with it. Today, with that wand I would have turned those coffee cups into margaritas!

I have learned a lot in the past 20something (haha- yeah 20SOMETHING is right) years of my life.

I’ve had a rough life, I wont sugar coat anything, but if there is one thing I know, it is that this past year has been the greatest of them all. AND I only anticipate them to getting better.

Happy Birthday to ME… AND may the next 20something years be just and even more amazing.

(pics to be added later)

Money money money!!!!

(did i get your attention...)
Once again, I had this great blog entry all typed up and ready to go, then somebody changed my mood which didnt fit the super happy entry I had, so I had to switch gears...
But instead I found this great blog

http://mycharmingkids.net/2010/10/do-something-good-win-lightroom-3/

I invite you to check it out, and make a donation.. (yeah Yeah I keep asking for money, but IT's not for me, it's for great things in life...)
LOOK - I dont have any money! LORD knows I can barely pay my bills sometimes, but I know my $5 can somehow save the life of this child, so I donated $5! And I hope everyone can stop being so selfish for once and dig deep into their hearts...

Even when I am in a bad mood, I am still trying to save lives! geez.

And to make the mood a little better... here are some pics:

Not a Good Day

Today hasn’t been a very good day.

See everyone, I am more like you than what you think. Having a very special child doesn’t give me special powers. Though I wish it did. I would have a wand and swing it around and turn people into toads… better yet, I would pop their implants and make them gain 50lbs with a single swing of my wand.

I still can’t stop others from being ugly and malicious.

It hits me very hard when people disrespect me. If they cant respect ME, a grown woman that can speak up for herself, how can the world ever respect my son.

And you know another reason why it really sucks, because my life generally ROCKS. Maybe my OH SO ROCKING life is too much for others to swallow and they are envious of all the good I can make out of my life. But did you read that ? “ALL THE GOOD I CAN MAKE OUT OF MY LIFE.” I MAKE the magic happen in my life.

I think I will go hide under a rock for a while today… and pray… for myself… and HER-EVIL-WICKEDNESS.

IT Just Works For Us...

I started writing today about TNI… then I stopped. Another topic popped up in my little head.

We’ll leave TNI for tomorrow (Target Nutrition Intervention – go ahead, go do some research while you wait for tomorrow).

A topic that is consuming me today is where I fit in this whole Down syndrome thing.. where my husband fits, where my children fit.

And you see, somehow, someway, we all just fit. Each one of us are a puzzle piece. We all interlock perfectly and we all just fit.

This just works for us. Maybe we are all following this journey with our hearts. Somehow we all have the same dreams and hopes and we are all traveling on this one single road, together.

At times I wonder, do other families, with or without a child with Down syndrome, do they wonder if we are “too” involved. I am sure to others it might seem like this whole Down syndrome thing is just consuming us and our whole world just perspires with Ds.

Um –maybe that is so. But it just works.

The girls, they jump up and down when they know we are going to the Resource Center, obviously they enjoy it just as much as we do. They love the music therapy and the art classes. They love seeing the new babies and they love getting hugs from Joshua. They simply love it.

Once they cried when we couldn’t make an art class. Yes, they cried. We don't push it on them, it just comes naturally to them. It's almost as if they don't even remember life without Ethan. And to be honest, I don't even remember life before Ethan. We are all swallowed with happiness that Ethan brings. And if the girls ever chose to not participate in an event related to Ethan or Ds, that would be just as fine as well. If anything, they are dying to bring their friends with them to meetings and events. They are anxious to show the world how blessed their lives are.

We always leave the Resource Center happy and feeling blessed, almost as good as we feel when we leave church. Sometimes on our drive back home from the RC, we don’t even talk, we just sit there the whole way, quietly, I think we are all thinking the same things at that time, and words aren’t even needed.

We are just like any other family that has a child with a disability, but at the same time we are not. I think everyone has a special calling in life. And I think we have found ours. Ours is to help others, to become as involved as we possibly can so we can help others. Also, adoption. Not everyone has a child with Ds and immediately wants to adopt another child with Ds.. but we did.

We just knew this is where we belong. We just get “it”. Our “IT”. Every family has their own “it” to get.

Sunday we all sat together to watch Extreme Home Makeover ( the Lutz family). Gabby asked if we could adopt more children with Ds. SHE ASKED herself. I think we all feel it and we all get it as a family.

Our girls, their lives are pretty normal. Today they start dance at school. They come home and do homework and play with their friends. They go to sleepovers and talk about boys. They like to look pretty and paint their nails. We talk about school, we talk about their friends.

But they know they have a brother with Down syndrome, and they talk about their brother to anyone willing to listen. They wear their Buddy Walk shirts from last year to their friends house. They stand up to bullies and correct them on the R word… somehow, they make it work.

Daddy goes to work and talks to  his buddies, I am pretty sure they talk about fishing and hunting, and hey, I am probably sure they also talk about pretty girls. But Poppa Bear also talks about his son, how much he loves him and his own desire to adopt.

I go to work, I drink my coffee with the girls, we gossip, we laugh, we talk about shopping and what we did the past weekend. We talk about our daughters, and oh my how our daughters will soon be teenagers! But they know my son has Down syndrome, and we do, we talk about him and how much we love him.


We have our date nights without the kids, but all we do is talk about our new life and our new direction... we are in the process of planning days with just the girls and no Ethan, in the meantime Ethan tags along, because guess what, they want Ethan to come! But it just works.

We just continue to take it all in one day at a time.

This is our life, and it just works for us.

My Sweet Elizabeth

Elizabeth…? Who the heck is Elizabeth you are wondering over there. Yes yes, I know, I have two daughters and their names are Andrea and Gabby. Two little girls I could never live without.


I am prayer warrior, through Reece’s Rainbow. I was matched with Elizabeth. She is an orphan with Down syndrome somewhere in Russia.


I can’t even begin to describe what I feel as I look through all the pictures and bio’s of these children on RR website. MANY children waiting for their forever families. Some of them resemble Ethan’s little face. I spend a whole lot of time just crying over them. Not just my eyes cry, but my heart and soul.


I KNOW one day we will adopt one of these children.


You have to understand why I cry so much when I see these faces. Not because they have Down syndrome and they resemble one of the biggest loves in my life or because I want to save them all, but because once they reach a certain age (usually 4 or 5) they are thrown in institutions where they will never be able to be adopted out of, and they will basically rot to death… tied to a bed, or a crib, some small cell like room with very little interaction. They won’t live many years after that.


Tell me that don’t shatter your heart…especially if you have ever held Ethan or held another child like Ethan. To know that hundreds of children like him will never be held the way I hold Ethan… they will only live for maybe half the life span of Ethan –yeah, it is safe to say that it hurts.


In the meantime, I will pray for Elizabeth, that she stays in good health and for her to soon find her forever family. I will pray. Day in. Day out. For Elizabeth.


I pray that she finds her mommy and daddy that will tell her that they love her. Two parents that will love her unconditionally and see the true beauty in her almond shaped eyes and kiss her the way I kiss Ethan every other minute.. two parents that will tell her that God loves her as well.



For more information on Reece’s Rainbow, check out http://www.reecesrainbow.com/


Feel free to make a donation as well.


Feel free to pray for my Elizabeth.

And the end...

Today... after his nap.

no, not the end of our journey, but of last night.


Last night we cuddled Ethan right in between us. Daddy had to wake up early and I didnt want to be alone at 3am in the morning, so for the 1st time in a very long time, we let him sleep with us.

I had a foot in my face every now and then, and punched few times. But I didn't mind. Eventually he wedged his little body right next to mine. I would wake up just to take big long sniffs of his little stinky head. I wrapped my arms around him many time, and he didn't even push me away, didn't even budge... My little boy.

I didn't get much sleep. It is ok. It was worth every second last night.

And the most perfect way to END the night.

New trend, to wear your bib like a cape.

The Beginning

April  1, 2009, that was THE day.. the day the phone rang with the heart wrenching news.

I was at work that day, sitting at my desk, about 18 weeks preggo, weighing in at 152lbs! (ha I weigh just a *tad* more at the current time)

We had just gone to the doctor the Friday before where we found out that we-were-having-a-BOY!

So when the doctor called the previous day and left a message to call her back, it was a bit alarming. It didn’t help that we couldn’t get a hold of her the next morning. She was conveniently busy delivering a baby. I probably called the dr’s office 20 times.

Finally she was calling me back and I quickly answered. There I was at work, where I sat, at my desk.

“You have a few minutes to talk?”

“Yeah sure” I mean it couldn’t be anything real bad, right?

“Are you sure? I can call back at a better time” she asked.

“Right now works” I told her.

And just like that, I heard her breathe, I heard her take in a deep breath and she braced herself for what she was about to tell me. I heard the sadness in her voice.

“There appears to be something wrong with the baby. There is a bright spot on the ultrasound, an echogenic bowel; this is a marker for Down syndrome”

Honestly, she lost me somewhere at “something wrong with the baby”, I mean, WHAT does she mean, “wrong with the baby”… and echogenic what? What the heck is that? At that time I heard echogenic bowl. There is a bowl in my baby’s stomach? What is she telling me? Down syndrome, what the HECK IS THAT as well… Down syndrome. This terminology, I don’t understand.

But by then I was already a mess, tears were flowing, heart was aching, stomach was in knots!

With a shaky voice I asked, “… But it could be anything right?”

She said something about, yes maybe, maybe it is nothing that will repair itself on its own or maybe require surgery shortly after birth, and this and that.  I just wanted to find some comfort from all that she was saying.

This little boy, that I loved so much, and I had not even met him yet, this little boy, that we wanted so badly, he was being ripped away from me before I even got to see his face.

Somehow we finished that conversation, and for a minute I just sat at my desk. Tears splashing on my papers in front of me. I gathered all of my courage to get up from my chair and hurried over to the restroom.

I locked myself in there. Leaned against the hard cold door, it offered me no comfort. And I slowly slid down the door and unto the floor. Not knowing, not understanding. Holding my bump, where my son so peacefully rested.

Had I known then, what I know now.