Wednesday, March 30, 2011

I am convinced...

...that my life is as wonderful as I have allowed it to be. I chose to believe that this how God intended my life to be.

If you must know, I have lived a very difficult life. Things that aren’t for the telling here.

When my doctor told me that my baby boy could possibly have Down syndrome… I told myself “of course, WITH EVERYTHING that has gone WRONG IN MY LIFE… this should be no surprise that my child could possibly have Ds…. Of course GOD.”

BUT OF COURSE I now know that my child having Down syndrome does not fit into any of those sad and horrible categories of things I dealt with in my past. 

I could easily name other things that are more horrible than having a child with Down syndrome. Easily.
And I talk from experience. 

This raising a child that is “different” is by far so much easier than some of those things. 

I am convinced that my son coming into my life is a blessing. That he has helped change my life for the best.

He has been God’s remedy to many heartaches. 

Today, I am full of feelings that seem too good to be true. But they are indeed real. My mind is overtaken by thoughts of my children. As I picture their smiles I can almost hear their laughter.

You know that sensation inside of you that is so grand and powerful… that your eyes just water without even thinking about it. That is how I feel …just thinking about them. Their smiles are engraved in my mind. Picture perfect.

And you know another great feeling... as I am sitting here writing, my phone rings. It’s the hubby. He tells me how he can’t stop thinking about our family. To think that we are miles away, yet our hearts and minds are so in sync.

I am convinced that God is great and that he works in amazing and mysterious ways.

…and that is today’s ramblings of a mother’s heart. 

Monday, March 28, 2011

What can I say..

sometimes I have nothing to say... because sometimes pictures speak a thousand (and one) words...

This weekend was our first trip to the beach.. and it is only the beginning....

 (aunt Kristin... mommy to Warren, who is 6 and a twin and has Ds. We LOVE them.)
 (and that would be Warren. He is amazingly amazing - along with his brother Sam who wasnt here that day)
 Andrea and Warren are the same age, and I LOVE the way she cares for him..)
 Seaweed in your way... No problem!

I LOVE our life.

Thursday, March 24, 2011

A Sister's Voice - A MUST Read

Ok, I had originally seen this on downsyn but DID NOT take the time to read it.. then I seen another blogger friend (also from downsyn) put it on up on her blog... and realized it really must be a MUST READ!!!!

and it is....

Translated this from Norwegian to English, it's a piece written by Trude Trønnes-Christensen, a contribution to the Norwegian debate of whether to screen for Down syndrome or not.

A sister's voice.

Hardly any children are born with Down Syndrome in Denmark anymore. They are aborted. Norway may move in the same direction.

I have a story to tell.

How hard it is to write these words. So hard, and yet strangely easy, the words are heavy, but the heart is light.

The words are difficult, because they move into a room I want you to be touched by. There has to be power in these words, I understand that. The words are hard because they also belong to reason. And I don’t know if reasoning has a place in this.

The heart is light, because the heart just knows. That my heart belongs to my brother.

So how do I start?

What is this? Is this a battle speech? A party font? A sentimental story of a sister who stands up for her brother?
Maybe it’s all of this and maybe it’s not that either. Maybe it’s just me raising my hand, asking to be heard. Because I have something to tell.

I have something to tell you about a brother born in 1972, with stubby fingers and small neck, with sparkling eyes and a cute little mouth, and Momma saw immediately that he had Down Syndrome. He was named Stian.

Momma can tell the stories about the grief over what didn’t arrive, the joy of what did, the ladies who crossed the street when she walked down the sidewalk with the stroller, all the meetings, the decisions, the battles and they great mother’s love one feels for a child who needs more protection.

I can tell the sister story.

The sister story is beautiful. It’s also sore. Which is why it’s strong. Because through all the soreness, it’s beautiful. It’s like life itself.

The sister story carries bids of soft hands stroking through the sister hair, of strong arms that pushed away. Of a little big brother who took up so much space that sister some times thought there might not be room for her.
It’s a story of a brother who filled a house with so much love that some times I felt that now I’m overflowing with happiness.

A family can be each other’s mirrors, and I mirrored him. My brother who laughed with joy over the little things, like a new Donald Duck magazine on a Tuesday, like a trip to the swimming pool, like locking Daddy out on the porch on a cold winter’s day and Daddy was pretending to be angry and brother’s shrieks of joy reverberated through the house. Stian would spin with joy over winning a soccer game on a cool summer’s day in the back yard, and he would clap his hands over the hot dogs that were placed on the barbeque, he would stand over them and clap his hands, while the rest of us would just lie on the grass and wait. An ability like that also opens up the possibility for anger.

Stian was angry. So angry that he immediately identified with Sinnataggen ( in the Frogner Park the first time he saw it. Because if Stian got angry, he could be som angry that time stopped and the birds got quiet and the big spruces that were standing close to our house, pulled back a tad. And I, sister, walked out of the house and took a break.

The sister story also contains pictures of children who weren’t nice to Stian. Who pointed their fingers and laughed, whispered mean words in his ear, held him back and mocked him. Stian who winced and made himself small before he tore lose and ran.

But there were nice people meetings, too. Good friends, good neighbors, good moments. They outnumbered the bad.
Good people meetings, like the first time I met another sister, when we immediately understood each other, when the untold could remain untold, we had something not spoken laying over us, just like a veil of silver threads, and we knew that we had something nobody else had. And here I am able, as an adult, to go in, translate and name it empathy and responsibility and human knowledge, but I thought the experience of a silver veil says so much more, because a lot may work out the empathy and responsibility, but only something unique can produce silver veils.

Stian, my Stian, the only one, and how, my dear brother, will I manage to communicate your infinite value and great importance to this world?
When the world doesn’t want you?

Do I show them my heart? The heart that is yours?

That through my sisterhood to you has grown strong and warm and open.
Strong, because it has been close to a being that needs strength. Warm, because it has received endless love. Open, because it has witnessed a life that sees the world from a different viewpoint.

How do I convince the world that we need you?

Convince the world that we can’t just cut this piece of life away, as life has always been like this, through thousands of years of fully lived human lives?
Stian, you are life, the way it should be. The way life is.

Today, Stian is a grown man. He is the uncle of my children and my husband’s brother-in-law. An uncle who doesn’t say much, he’s a man of few words. He is grown and calm, and it’s been a long time since the birds were scared.
Uncle Stian, my children say, and give him a hug when they walk past him. Do you want to do a puzzle, uncle Stina, they say, and he nods and lays down on the floor, the grown man, and puzzles like he’s never done anything else. Uncle Stian, would you like a cookie, they say, and laugh as he’ll rather have two. He laughs back, and there, if I could have lifted this out in front of you now, you would see a tab of the silver veil, of magic, of communication so finely tuned and beautiful as a piece of music composed by tones you think you’ve never heard before.

But we have heard these tones before.

They have been part of human kind, of our lives as long as we know of, and I know that they do something to us.
They touch us and challenge us to be something that we could otherwise not have been.
They give us something that we could have otherwise not have been given.
To cut this away, cut this piece of life away, by denoting children with Down Syndrome an abortion possibility, is scarier than I think we can understand. Someone wants a medically oriented debate, or a debate on the right to make your own choice. I am tired of it.

I am tired of reason talking of burdens, costs, challenges and strains too hard to handle. That one has to be allowed to escape.

No, we shall not escape.

Maybe reason has no place here. Some things can only be comprehended by the heart. Love can only be comprehended with the heart. As can life. Stian is life, Stian is love. Stian can only be comprehended with the heart.

I have something to tell you.

I have to tell you that now is the time to use the heart.

Full article with pics here:

Monday, March 21, 2011

Somebody tell me we ARE so different...

and what a burden my son has been in our lives... And how he suffers from Down syndrome...


But maybe we are different.... we live for each day and know how to have fun! Extra chromosomes and all.

The Saldana's

On a mission

There was a time in my life I never knew what it would be like to be the parent of a child with  Down syndrome..or any type of intellectual disability. It’s one of those things you never think of. There was a time in high school when I used to walk by some individuals with Ds. One boy in particular always stood out. I admired him. And no, I am not just saying it because NOW I am parent to someone just like him… but because I really did admire him. So carefree and happy when being in high school was all about worrying about fitting in. He didn’t have to worry.

I really didn’t “know him”… but I wish I did. That was the closest experience I ever got to knowing someone with Ds. And the fact that I admired him so much, I think it was a sign, from God. I think He already knew all along… of course He knew. 

I never really wondered about his family. I never really wondered how he became to be. I just saw him as a person that was different. But I also knew it was something I shouldn’t wonder about or worry about because I would NEVER PERSONALLY KNOW AN INDIVIDUAL with Down syndrome. Lets face it, those things don’t happen to me

Well looks who’s on the other side of the fence now!

Yup. It’s me.

Because guess what? it can happen to any woman. 

And here goes another GUESS WHAT?
It really isn’t that bad… to have a child with Down syndrome. As a matter of fact, it is not bad at all.

I know, I know! I preach it all the time. But geesh! if I can get through to somebody, it will be worth all my yip- yapping! 

I am not sure how Down syndrome got such a bad name,… or how it came to feed so much fear into the heart of a pregnant woman, as she clutches her stomach where her unborn child with Down syndrome sleeps. 

Today is World Down Syndrome Day.

And today, and every day I celebrate it. I am on mission to prove that our life is as normal, perfect and different, as every family in the world is. 

I encourage everyone to get to know someone with Ds and their family. You will you learn a lot. And your heart might just explode. 

Wednesday, March 16, 2011

But most of the time, it is really good

Although it might have sounded like I was complaining in my last post, I was merely venting some feelings.  Frustration. Most of you parents with a child with Ds can relate, been there- done that, or maybe one day will feel. For those of you who do not have a child with a "disability", I am sure you cant even image some of these feelings I have. But they are real feelings
But for the most part, life is real good. I wouldn’t ever trade where I am in life, with my husband, the girlies and ETHAN. I love it. 

I take a deep breath, close my eyes, see ALL that I have, … I love - LOVE IT.

I am sure there are those people who feel pity towards me.
Let them.
The truth lies in my eyes…in my heart… in my soul…

My life is far from vanilla.… there is no vanilla here. It’s all Rocky Road in this house. Deliciously flavorful.  And literally, it is a rocky road! A muddy rocky road that we get to splash and laugh our way through.

It is...
Real good...

Monday, March 14, 2011

sometimes it is just so hard…on my heart.

     One thing I have said over and over:  The hardest thing about having a child with Down syndrome is not the Down syndrome itself, rather the misconceptions I have to constantly face and invalidate.

I can handle the doctor’s appointments, the therapies, the evaluations. I tackle those things, even when they seem overwhelming.  I can handle that. I can also very easily do the milestone delays. I know in my heart that God has given Ethan the ability to reach his milestones, it will just take him a little longer and a little more patience from others. 

But to consistently feel like I have to be on the defensive and to consistently have to educate others, it becomes weary.  I have learned to choose my battles. Sometimes I say nothing at all when given a chance because not every chance given is worth the effort. And sometimes, the people are not worthy of my time.
Honestly, I don’t care much for hanging out with people who don’t have a child with Ds. I don’t want to be stuck in a room when some random person slips with some awkward comment that somehow affects me, my son, and my family. I like my comfort zone. I like my friends who are parents to a child with Ds. I like my handful of friends (who don’t have a child with Ds) who respect me and my son and truly “get it”.

I have admitted many times already, that before Ethan I never had any direct contact with anyone who had a child with Ds (or any other intellectual disability). I knew NOTHING. I used words that dehumanized individuals with disabilities. I was an ignorant person. NOBODY ever told me otherwise. But now God has told me otherwise… I thank God for the opportunity he has given me, to parent His child.  I know better now. And listen, God has placed us in each other’s path for a reason. Make something out of it.

But DANG it, sometimes it is just so hard…on my heart. 

I look at my son, and I see a beautiful human being. Just like his sisters. Just like any other child. 

And why do us parents have to fight so hard for something that should be a given. 

Why do I constantly have to remind others how valuable Ethan’s precious life is. 
And now with this non-invasive prenatal test for Ds coming out soon and how some doctors are marketing it as a way to eradicate this “disease”!!! Down syndrome is not a disease! And since when is it acceptable to want to eradicate a specific set of human beings.  These doctors and researchers with no firsthand knowledge or experience with people with Ds… who only see $$$$ signs instead of the actual value of life. It is sickening. 

And how many times do I have to tell family and friends about how demeaning the word “retarded” is. Plain and simple: You are related to Ethan (or you are a close friend of ours). The word dehumanizes my son. You are placing less value on my son’s life (even if you aren’t directly talking about Ethan). Seriously, it is much easier to just make the change than to sit there and try to tell me why the word is not offensive. 

Seriously... do you really think you are going to change my mind on how offended I should be? Do you really think your lack of knowledge and experience qualifies you to tell me otherwise? 

I live this life, day in, day out. With my son, who has an intellectual disability. I think I know firsthand. I am the one that has to fight for his rights; I am the one who has to stand up for him. I hold him tight in my arms when he faces discrimination. So don’t you run your mouth like you know better than me. 

Until you have to parent and love and care for a child like mine, you are disqualified to try to prove me wrong.