Christmas and Down syndrome research

Ok! Two very important things today –Christmas and Down Syndrome Research.

Santa made his way to our House. And I have the picture to prove it.

Santa is a sucker and somehow fell for Ethan’s “I was a very good boy this year!”

And I don’t what lies my girls told Santa as well, but he was very generous to them as well.

But amongst all the fun of Christmas and its magical ways, I always remind my girls the reason for Christmas. Yes, the birth of our Lord, Jesus Christ! We even baked him a cake and sang happy birthday to Jesus. We threw an assortment of candles from over the years and said a little prayer.

And we shared our cake with Santa. “He tore it up” according to Gabby.

It is such a blessing to be able to provide for my children. To see their faces light up on Christmas morning, glowing with excitement and their little voices screeching. I am reminded of the very little I grew up with and how we didn’t always have gifts or even a tree for that matter. My goal in life is to do my best for these children, to guide them towards Godly ways and help them achieve their dreams. I am their biggest fan and supporter.

Speaking of-

Because I am so passionate about my son’s future, his friend’s futures, all those other children that will continue to be born with Down syndrome and for every single person out there with Ds, I am asking you all for a favor:

Help Down syndrome research receive a grant!


I hear it ALL the time, about the lack of Down syndrome research and how we get pennies compared to other illnesses, disorders and such for research. But what ARE YOU doing about it?

Right now I know everyone is fired up about the Etsy shop and Etsy’s irresponsible and unethical way of handling it. Parents are coming together to make a difference. YES I am bothered and I hope Etsy does something about it SOON. Now if all these parents would also come together and do something in regards to Ds research, we CAN BE HEARD. Sure, I will sign the petition to bring that Etsy shop down, but my energy I will focus on Ds research. Ds Research can change the life of our children. Even if it doesn’t happen now, Down syndrome doesn’t have to be what it is! IT DOESN’T HAVE TO BE.

Take a stand and show the National Institute of Health and the rest of the world that we CARE about our children and that a market does exist of us parents/caregivers/ friends of people with Down syndrome that want better for our children. We are not trying to cure Ds. We are trying to help our children achieve their dreams!
Paul Watson is organizing a petition to present to the NIH to prove we need funding for Ds. He has received a great amount of petitions but would like to double the numbers by January 4th. Please forward to all of your friends and help make a difference!
 Who is Paul Watson you ask. Paul has a 9 year old son with Ds. Lives in Dallas and is a pilot for SW airlines. He is on several boards and committees that serve people with disabilities. You can even contact him directly and he is more than willing to tell you more.

Below s a message from Paul Watson and what you can do:

PETITION REQUEST:
Hi,

Today is the day I need you to step forward with a small act to support Down Syndrome research. No money, just your name and words are needed.

We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!



There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.
 In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change!

So join me today in saying this to the NIH decision makers:

We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS Cooperative Program in Translational Research - Small Business Awards (SBIR [U44]), Principal Investigator Elizabeth Moyer, PhD.

Your steps:

1) email me to add your name and email address to the petition. just say "add" with your name and email address

2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.

3) call or email me if you need more info

Time is critical in this process, so please act now!

Merry Christmas and Happy New Year!

Paul Watson
pjbwatson@yahoo.com

FACT – Ethan is the cutest kid ever

I was originally going to post about our Christmas –but Christmas pictures will have to wait till tomorrow!
 

See, last night we had our first “encounter”. 

What first encounter you ask, well obviously not the R word 1^st encounter. You’ve all heard me on those already. But the first encounter where a complete stranger can see that Ethan has Ds and said something! Yes that encounter!!! 

First of all, YOU ALL Ds mommies do think “does anyone else see the Ds in my child?” Yes you do. Don’t deny it. Every time we go out, it is a guarantee that someone will compliment my little booger. We get all sorts of variations of “oh he is soooo cute!” as well as a lot of “he is the happiest baby ever.” 

Do they see my son and say “that is the cutest baby with Ds” or are they saying “that is A CUTE BABY”? 

Regardless of what they are trying to say, I always take the compliment. He is a great looking kid. Definitely a head turner and attention grabber. That is a fact. Not just a mother’s rambling! FACT

 (Down syndrome or no Down syndrome, Ethan is the cutest little brat I’ve ever seen -Sorry JJ! I know you think Zack is the cutest kid ever, BUT….)

…back to the story:

Last night we went out for dinner to Joes Crabshack. One of the waitresses there was playing with Ethan, but Ethan wasn’t having it. Yes, that is odd since Ethan loves people and he will flash you a smile from a mile away. The waitress mentioned she was pregnant with a boy and said that little boys just don’t like her right now. You’ve heard that old wives tale. When you are pregnant with a boy, little boys don’t like you but little girls are drawn to you and vice versa.

She even brought him a peace offering – a slice of pineapple. Ethan didn’t care for it. A few minutes later, she comes back and asked Gabby’s age. We replied with 9 and she then said it…

“Have you ever read The Man Who Loved Clowns?” All of us looking somewhat confused looked at each other and said no. Talking to Gabby, “You must read this book! I grew up with an uncle with Down syndrome and this book really helped me.” 

She made the connection. She KNEW our baby boy had Down syndrome! Wooohoo! Finally –out in public and someone said it! 

The waitress talked about how her and her uncle (or was it her cousin..?) where very close since they grew up together. About the same age, 25 yrs old, and how she really loved her uncle but growing up was hard to see him being ridiculed and she had a lot of anger building up until finally one of her teachers at school, who was partially deaf and had a little boy with Ds recommended that she read The Man Who Loved Clowns. The book helped her tremendously and highly recommended that Gabby read the book. I am happy to say that our first encounter was definitely a positive one. 

On our way home we had a mini heart to heart with Gabby. We told her that one day it might get hard. One day there will be someone out there that will be mean to her brother. They will make fun of him and yes she will get upset, especially because she will not understand how someone can be so hateful to someone like her brother. Not everyone will be able to see the greatness in Ethan, but hopefully she can be strong and remember that Ethan is her brother and we will stick together and we will face those issues together. 

She said “why would anyone want to be mean to Ethan? ....Ethan is more perfect than any of us.”

…I am so lucky to have the daughters l have and the son I have.

(If anyone has read the book please let me know what you think about it. I read the reviews online and they were amazingly awesome.)

Dear Santa

I have been a real good boy this year...

I promise...

 but there was that one time I -...

... oh, nothing! I have been a real angel!

Merry Christmas,
Ethan

Heartache and Randomness

....I haven't been up to blogging this past week. I have been having a real tough week fighting emotions in my heart.


No, nothing that has to do with my family. My kids are wonderful as is the husband. Ethan has been a little booger every  now and then. I blame that on teething. But aside from my almost perfect life at home, (yes, a noisy messy house with kids that are driving me crazy is the PERFECT life for me) there has been something that has been completely killing me inside. The more I try to forget about it, the more it hurts.

I dont hold grudges, I forgive very quickly, I forget within 2 minutes that you have hurt me, and I just move on. But this just hurts a hell of a lot. I am not holding grudges, but it HURTS.

Words are powerful. I say, chose your words wisely, especially with those that you love and love you dearly. And don't judge them either, you might not know their circumstance or what they are trying to accomplish in their journey. We all have different journeys in life and maybe theirs are different than yours, doesn't make them better or worse than yourself.

And for the happy stuff, random pics of things we have been up:

This year we downgraded the Christmas tree, to an itty bitty tree out of Ethan's reach.  And to make up for the small tree we made sure to deck out the living room! Hanging out watching the Polar Express.

And the booger with the boogers... and drool -I told you he is teething!

Ethan with Daddy

and hanging out doing arts and crafts... this sums up our week! sort of at least.
 

Victory on the Battlefield

I realized that a simple trembling “WOW” was not enough. (The R word incident)


After much thought and some very good advice, I decided to add to my “wow” reaction with an email to that person. To point out that I have been offended and why it was so offensive. (NOT to retaliate on his behavior, not to be ugly, but to educate and make him aware.)

After pressing “send” on my email, I was terrified! What HAVE I DONE?!!

I don’t know where this “bravery” (if you wish to call it so) came from, maybe after staring at a picture of Ethan, and I knew I was not doing him any justice by just sitting around and being bitter.
Somehow I swallowed that lump the size of a watermelon in my throat and just did it.

This morning I was trembling in my boots. Thinking I was going to be walking in to a room full of retaliation in response to my email. I prepared myself for WW3. I tucked my hair into that battlefield helmet and tighten my combat boots. Deep breath…stood up tall… walked in.Yet I wasn’t greeted with bombs and machinegun fire! I was greeted (by others) with a “way to go!” I was a HERO in a war! This war of WORDS. I fought his words with my own words.

I have yet to hear anything from this person. Maybe my words pierced through his bullet proof vest.

I am not sure if this war is over, but as of right now, I am standing (and standing tall) on this battlefield full of gun smoke with my victory flag waving amongst the ash.

Truth is we will have many battles along the way. We will win some and lose many, but for every one we do win, they will be worth every one that we have lost. At least we took on the battle.

We took on that battle the day we said “WE WILL NOT ABORT” when we found out Ethan would possibly have Down syndrome. Every day when I get home, it is as if I am lifted up in the air, high fives and cheers, like a Hero back from war… Holding Ethan, like my medal. But Ethan, YOU are MY HERO. You are the true Hero in all of this.

Someone told me today, “Obviously you know you can’t fight the world", in reference to what had happened.

I cannot fight the world nor can I change the world, but changing one person’s perception is just as powerful and rewarding.

Sometimes Painful, Always Rewarding

Yesterday, I was stabbed. Stabbed right in the heart with a rusty old double sided knife.

I was in certain place, walking by certain people when someone decided he was above anyone else and has the power to speak with such vulgarity.

The phrase said was “…. I am a F’n R****D…”

I froze in my steps, looked back and almost paralyzed all I could say was “wow” out loud.

It was an out of body experience. The world moved in slow motion, I could see myself and everyone else in the room… I could not think straight. A million thoughts raced to my head, but not one thought was complete.

“WOW. Did you really mean to say that…” was what I would like to have said..

“WOW, Did you really mean to say that, don’t you know I have a child with Ds…”

“WOW, Did you really mean to say that, don’t you know that I have a child with Ds and what you just said is highly offensive”

“Wow, Did you really mean to say that, don’t you know that I have a child with Ds and what you just said is highly offensive and demeaning to individual with disabilities. Not only is it highly offensive, YOU ARE not in the position to speak in such a vulgar way. “
Or
“Yeah, if you are going to use to that word in such a derogatory way and if that is what you think it means… yeah you ARE THE BIGGEST F’N “R”.

Or like my friend, Tina Roquemore said “Amen Brother! Preach it”

I have always prepared myself for such moments. I had it down, I practiced it many times. I was READY for a moment like this. But this… it was a slap in the face. I have always braced myself for this moment, because it was coming and I knew it was coming! I knew it was!!! I just wasn’t ready. Or maybe I didn’t think it would be so hard.

All I could say was “WOW”.

It wasn’t the occasional slip up some others commit that you educate and you move on… it wasn’t a “oh, I am such a “R”..” type of statement.. No, it was said with intentions to hurt.

I understand that not everyone gets “it”. I can take an occasionally slip. But the way it was used yesterday, with so much passion and heart full of hate. It shattered me. It’s those people that I am scared of. Those nasty heartless people who will intentionally hurt my son and others like him.

I wanted to run home, once again, and hold my Ethan under that rock that seems to always bring me some sort of comfort.

It is not Ethan’s Down syndrome that scares me, it’s people like this that refuse to see my son as a human being. I have worn my Spread the Word to End the Word shirt in front of him in the past. I have talked about my son, what he means to me and all that in front of this person. Yet, he sat there, with the biggest grin on his face and with the loudest most arrogant voice, he said those words. 

I came to a conclusion shortly afterwards:

Even though some things hurt like crazy when you have a child with special needs, at least I can love like crazy. Love in a way that some will never be able to love.
And this love, I wouldn’t trade for anything.