I Challange YOU - 31 for 21

My litttle cub bear... how I LOVE him. Today I received  a call from someone VERY important that cant make the walk... needless to say, it broke my heart.. BROKE.
Didnt I give you enough notice? Does Ethan mean ANYTHING to you...

People, I laugh at them... some have NO idea of our struggles...

Anyways, October is like HERE, (October is also Down syndrome awareness month)... and I have decided to take the 31 for 21 challange...for 31 one days YOU WILL SEE MY BLOGS POP UP as I talk (type) to something in regards to Ds.. whether it is something super exciting or not. About Ds itself directly or about life with Ethan... but I will blog.. .for 31 one days..


Grab This Button

... you are either with me...or you are not...

and I challange you to follow our journey for 31 days..

No Burden of Mine

A recent online article on the New York Times website made my heart race with utter joy!


In short, the article was about a mother with a daughter with Down syndrome, and how she refused an amnio with her following (current) pregnancy because it wouldn’t matter to her if this other child of hers had Ds. She loves her daughter and never sees herself regretting her daughter.


THEN I read the comments. It was a kick in the gut. And not just any kick in the gut, there was a steel-toe boot on that foot! This woman’s story set other readers off! There was this “what a horrible mother for purposely bringing a child with a disability into this world and possibly bringing another one” tone in these comments. They bashed her for loving her daughter unconditionally and challenged her to write the same story with the same happy beat 20 years from now. As if she was to realize that her daughter was a burden, somewhere along the way. These readers without a child with a disability, how could they possibly make such assumptions. They based their beliefs and thoughts from outdated stories they had heard, people they used to know, and overall lack of knowledge.

There was a reader who stated her mom had CP, and her own life very difficult because of her mother’s life and diagnosis. Even though she realized that she was on this earth because of her mother, she would have wished that her grandmother had aborted her, had her grandmother had that option. But was it truly her mom’s condition that made it that hard, or her mom’s poor decisions in life (apparently, the mother had made some not so wise decisions along the way).

There was another mother with a child with multi impairments, and she said had she known then what she knew now, she would have aborted as well. That even though they centered their life around her and she brings them much joy, they are not sure this life brings her joy.

It was very hard for me, as a mother of a child with down syndrome, to swallow some of these comments.

If there is one thing I believe is this, Ethan brings us joy, and we will make sure to bring joy to Ethan, just the same way we will bring joy to our sweet girls.



I married my husband, and I am here to bring him joy. I gave birth to two daughters and I will bring them joy. I gave birth to Ethan, and I will forever bring him joy as long as my GIANT heart beats. As a mother isn’t that one of our responsibilities? We don’t just spit a kid out, and TADA, here is 20 bucks, go raise yourself, see you later, nice knowing you. Well geez, had I know it was that easy, I would have had 20 kids or so.

This past Saturday, was our monthly meeting at our local DSAH. We had a great guest speaker who was there to talk about advocating within the government. She is a mother of a child with multi impairments, but do you think she has sat around and boohoohoo’d , HECK NO! She was amazing! She radiated this empowering energy! She said something that I have always felt, and I am glad she said it. (I think she was reading my mind, as amazing as she was, she might have had super powers) She said this “When I meet my Maker, I want to tell him that I did everything I could for this child.” That statement was dead on for me. I have bent over backwards for this child, I have jumped all sorts of hurdles, I had to face prejudice directly in front of me. I’ve had to take deep breaths and go way out of my comfort zone to educate others. I have NAGGED others to death to make a point. And my son is only ONE. So you best believe I am not done! And I will continue, for as long as God allows my physical body to function, I will fight for my son and for others like him. When I meet my Maker, I will proudly say, GOD, this child of yours that you so dearly trusted me with, I DID everything in my power for him to live to his fullest potential and have a joyful life.

THAT IS RIGHT!
I feel so good just saying it!!!!
GOD is good I tell you. I will praise HIM, through the bad and the good.
And through the good and the bad, I will love all my children.


The real burdens in life and in this society are those people running their dirty mouths about nothing they have no firsthand knowledge about. Twenty years from now, I will continue to talk about all the joy Ethan brings me and maybe one day he’ll be able to chime in with his own personal stories of his very joyful life.
Oh, son of my mine, you are so far from ever being a burden and those of us that love you will never see you as such.

Buddy Walk - Status and Updates

“Officially” we are 11th place in terms of fundraising. I do have money that I need to turn in and that should bump us up!

That would put us somewhere in 5-6th place. But that would only be short lived. Top teams last year all had $5000 and up! I am hoping that with the help of The Houston Texas Fire Fighters Federal Credit Union, we’ll manage to end up somewhere in the top 10 when everything is all said and done.*** Big kudos to my friend Lori, who helped arranged this fundraiser with the HTFFFCU. She is an amazing friend that reached out to us.***

And it is not about being a top fundraising team. It is raising money for a great cause. A great cause that affects me, Santiago, the girls, and ETHAN.

I hope you can find it in your hearts to help us in some way. Even if you yourself cannot make a donation, it is very easy to take pledges from your friends and family!

I will be taking money from the wristband sales (the money I initially put in) and using that money to go towards a prize for whoever raises the most money for our team. I am thinking a few fun things as prizes!

And as of now, top 3 are:

*1st- My great friend and co-worker, Anabel. She has collected and sold wristbands, for a total of $330! And she is not DONE!!
*2nd- my dear cousin Verenice– sold about $90 worth of wristbands
     And Daddy Bear actually did a great job as well, but he doesn’t count! - He sold about $80 worth!
*3rd– goes to Alex.. selling about $65 worth of wristbands!

We also had a garage sale last weekend, but were rained out after about 2.5hrs. We still did pretty well for those few hours. We (I say we, but there really is no WE) will also be having one Friday the 24th.

THANK YOU to everyone that donated items for the garage sale!

Soon, I will be selling Dominoes Pizza Fundraiser cards, they sell for $10. Our team will get $9 out of the $10! These little cards are awesome. It entitles you to a free pizza (equal/lesser value) after you purchase one, but it has to be carry out and you can use it 16 times! I think that is amazing! And I hope you think so as well and buy one (or 2)!

Also, October 16th, I will be manning the booth at Macy’s at Almeda Mall. October 16 is Macy’s “Shop for A Cause”. For $5 you buy a discount card, that allows you to save 10-25% off your purchase! All $5 goes to our team!

I hope all of you continue to help out and help us reach our goal and beyond!! We truly are grateful. And for those of you who haven’t yet registered to walk, I say WHAT ARE YOU WAITING FOR???!!!! It’s free and easy. *Donations are encouraged! …whatever the amount ;-) even if all you have is ONE Dollar to spare.

Link to our Buddy Walk page: http://www.houstonbuddywalk.org/DSAH/2010BuddyWalk/EthansJackrabbits

Andrea

Today's blog entry is dedicated to my baby girl Andrea...
the precious little girl that can and will test every cell and every nerve in my body... but I love her like crazy.

Andrea turns 6 this Saturday.
Happy Birthday Baby Girl.
You are an amazing little girl that keeps me on my toes... my wild child... my beautiful child.. with a great big heart.
All of my children have a beautiful purpose on this earth, and hers is just as amazing as her sister and brother.
God bless you!

HELP Reece’s Rainbow win!

If you can please just take a minute to vote for Reece’s Rainbow, and help them win the 2010 People Magazine Hero of the Year award..

Reece’s Rainbow is an international Down Syndrome Orphan Ministry… they help orphaned children with Down syndrome (and other disabilities) overseas located their forever families.

Children overseas with Ds are practically thrown away!

Upon birth, when a child is discovered to have Ds,  doctors tell the parents to tell the rest family that they lost the baby and to put the baby in an orphanage, in which after a few years (4-5yrs) if they haven’t found a home they are put in institutions where they pretty much rot to death!

Reece’s Rainbow helps these children start funds (from generous people's donations) that can be used towards their adoption costs and and locate loving families! 

I have literally spent many hours crying for these children! What happens to these children is heartbreaking, but what Reece’s Rainbow does for them is heart lifting!

I am most definite, that Reece’s Rainbow will one day help us locate our next son. Which makes me extra passionate about this ministry.

So if you could please help Reece’s Rainbow  win this prestigious award (they will receive $10,000 as well)!

VOTE HERE   

(This will take you to the RR blog, where you can then click on the page which will then take you to People's Magazine.) 

Vote now through Oct 8. And you can vote as many times as possible!

Smile Like the Sun

 Today’s thoughts are not concrete or well thought out… they are just random things that significantly/insignificantly cross from one side of my mind to the other…

Overall they are happy mind crossings.

Today, I feel a little extra touched by this happiness I am surrounded by.

Today, even the  insignificant things  are losing their significance… making them obsolete, thus neither significant nor insignificant.

I am starting to realize that it is ok if not everyone is behind us, because I still have an extremely large group of supporters anyways! You have to lose some to win some, from what I hear.  It’s ok if not everyone understands me, or even tries to understand, because there are those that so clearly do.

And there really are some great people in this world, with hearts of gold. And thank goodness for old friendships. Especially those friendships, where it’s been years since you last seen each other, but when you need them the most, they pop out, just …like….that…

And it’s ok if I am broke most of the time, because just about every extra penny goes to all my children. And they are happy and healthy. It is OK!

They tell me I am the bestest mom in the world, even after scolding them after they have accidentally pushed their little brother over.  And maybe there is some truth to that. Just maybe.

At the end of the day, I get to be in my bed, with the man I love. He kisses me goodnight and he tells me he loves me.  In the mornings when I am sleeping with my mouth open and not looking anything like Sleeping Beauty, he still kisses me good bye. It just makes my heart beat rapidly with love knowing that after all of our downs, we have are here.

This extra weight that just won’t go away.. it’s ok as well! That same man that loves me so dearly, he loves me with and without these extra 25lbs just the same.  And if that is not enough, he makes me breakfast on the weekends.

Today it all makes sense.

Well most things.

All I am missing is a little Jesus in me…and its crazy that God loves me so much, even after I have denied him to be part of my life the way He should be… its crazy that even after all my sins and all, it seems like I am his most favorite child.  I must be.. I think.

So today, I sit here and I smile.

Guilt

I had a mamma call me last night. She has a teeny weeny baby with Ds. I say teeny weeny, but he is 6 months! Any child younger than Ethan is considered teeny weeny in my book!



Long story short, she was very grateful for being given my info, but she does not want to be a member of our DSAH because she knows those with Ds range from mildly and to severely delayed.. and she doesn’t want to run into certain children because it will depress her. Stories (moments) like that always get to me because I am not there. MANY times I read about these moms whose child is 6months, 12 months… 18 months… 2 YEARS+ who just can’t get over the diagnosis. And I am not talking about “moments”, because we all have our personal moments, I am talking about those that curse Ds day in and day out.



Sometimes I feel real guilty when I see other moms struggle with the diagnosis, though there is absolutely no reason to feel guilty on my part. At times I even feel like I can’t relate to some of these moms as we differ in opinions about what we feel. In reality, nobody is wrong and nobody is right and no one is better than the other person.

I am one of those moms that wouldn’t take away Ethan’s Down syndrome even if I could. Of course I would want him to function at a level where he could care for himself, but I wouldn’t go as far as to completely change him by removing that extra chromosome. This is my Ethan, and the Ethan that I know and love. For all I know, without that extra chromosome Ethan could be a monster of a child!

Lately I have been reminded by several people about how calm I was almost a year ago when they first met me, as well as throughout the year during Ethan’s first year of life. Of course I was very emotional in the beginning as feelings and thoughts and dreams were being rearranged in my mind and heart, but overall I was done with the grieving process after a week. I stayed up many nights that first week. I sought out other parent’s kind words and wisdom. I did a lot of research, even before Ethan was born, just in case he indeed did have Ds. IF there was ONE thing I knew I had to do was come to terms with his diagnosis before I could possibly move forward.

I knew that dwelling on the what if’s and the oh no’s and why’s, was NOT going to get me anywhere. I had to reach for my big girl panties and get on with it. Besides, with two other children, a husband, and a household to take care of, there was no time to sit and cry.

I grieved alright, and I highly recommend we all grieve and we let it all out of our system, curse whoever you want, shake your fist at every person in sight! But don’t let it take over you.

I don’t ever want to look back and regret the way I’ve lived my life.


I am very happy in my life. I enjoy each day. I love my children more and more each day. Every day Ethan becomes more beautiful in my eyes.


I want other parents to feel the immense happiness that my heart feels. Maybe I take it so personal because they feel sadness over having a child just like mine. And I can’t find absolutely one thing wrong with my son. I look at his little head, run my fingers through his feathery hair, trace his eyes with my fingertips, draw circles on his rosy cheeks, still with my fingertips I continue down his little chest unto his Buddha belly, all the way down to his little pudgy feet and toes. Not ONE thing wrong do I find on that little boy.


He looks at me with his oh-so-ever curious eyes, and mischievous smile, his tiny shark teeth peeking through and I think , how could I EVER be depressed about my child!



So yes, this little ham of a boy, will not develop like his peers, yes he will be delayed and all that other stuff related to Down syndrome, but just because he has Down syndrome doesn’t mean he will never learn, or he will never talk or never walk, never dance, never BE! I cannot put limitations on him just because he has Ds! I cannot! And I will not!



Instead I will love him every day, I will encourage him every single day. We will work, we will push, we will cry!!!! But we will not give up and we will not be depressed! In return, Ethan will thrive to his fullest potential and I will eventually shout VICOTORY!