My son has Down syndrome, what does this mean?

As Ethan nears a year old, I go back in my thoughts, to those first few days back home from the hospital. As the meds wore off, as physical pain set from my c-section, and I could think more clearly. At least I thought it was clearly.

Santiago would be away dropping the kids off at school, taking Ethan to his parent or running errands, while I rested at home. Little did he know I wasn’t resting. Instead, I was breaking down. I was crying with all my might. Those tears were so hot and they burned, they burned the entire way down my cheek, unto my chest, onto my pillow. They could have burned the sheets on my bed. I cannot begin to tell you what the pain felt like… The pain was so immense. It felt as if something was being ripped away from inside of me… my heart maybe. It wasn’t a quick swift motion of my heart being ripped away, it was a slow, digging, unbearable sharp sensation. Intense. I sobbed as if I was gasping for my last breath. I never thought I would ever feel anything else but pure misery, hate and resentment. It might as well had been my last breath.

My son has Down syndrome. MY SON.  Is this a dream, is this really happening? Is this a joke? Because this just cannot be happening. This is just not real. This happens to “other” people, not ME. What does this mean anyway, my son has Down syndrome?

I sat there and every negative thing crossed my mind. My LIFE is over. No more vacations for us. No more going out in public, because people with such disabilities are not welcomed in public. We would have to live locked up in the house. We would live an isolated life. Here it is… my 28^th birthday a few weeks away, and MY LIFE is over.

Well guess what.. it was the end of my life.  It was the end of my life as I knew it.

But in return a new life emerged.

My son has Down syndrome, what does this mean? It means, I was given another chance in life, to live the life as I was intended to live.

In this new life, there is a happy joyous woman. With a deeper connection to her husband, her children and most importantly God.

Less selfish and more forgiving. Less judgmental and more accepting.

This woman, smiles more, laughs more, and cries more, oh, does she cry! But she cries at the beautiful things in life, because OH MY goodness, are they beautiful. The beauty in things, the most simple things, have never been so obvious before. These happy tears, they feel so good. They are what rain fall feels to a dry cracked ground. So welcoming and so relieving. Just as the rain drops roll into the cracks, and quenches the grounds thirst, these tears roll into the cracks of my heart and soul, quenching my thirst for life.

This other woman that feared so much, is gone. And I am glad that she is gone.  I don’t miss her. She was not worthy of this new life, or this amazing little boy, Ethan.

Ethan , deemed so imperfect by society, that he is far past perfect in reality. So perfect, it moves me! It moves me the way earthquakes shake the earth, with so much power and fierceness! So fierce.. just like Ethan, just like God intended Ethan to be. He is the earthquake in my soul. Strong and fierce, and drops me to the ground. As I drop to the ground, I am reminded of why I am on the ground, on my knees. I look up and I thank the Almighty Lord.

Ethan is the roots of my being… He keeps me grounded and connects me to God.

  

My son has Down syndrome, and that is what it means.

Picture Tuesday!

Naked babies are SOOO cute

What stay off the couch means to a 5 year old,

How 9 year olds chill. 

What babies do at midnight!

and how monkeys hang off their mommas!


and what having sisters is all about. 

Army Crawling...

Well it happened… Mr. Gordos has decided to show mommy what he is made off!

Last week, he started army crawling.

Yup, just like that, from ONE day to ANOTHER… he surprised me.

I was just starting to think, ok, maybe Ethan will not crawl before his birthday. And I accepted it. IF that was what it was going to be, then so be it!  (hey, that is the best attitude to have, cause then surprises like these just completely catch you off guard and leave you speechless and eyes full of tears.)

I got home, (last Thursday ) and Santiago tells me, “my mom said he is doing real good going frontwards”… confused me, “what do you mean going frontwards?”

He quickly ran to get an old rug out and throw it on the hardwood floor in the living room. I had just mentioned to him that my mother in law had said that the physical therapist suggested we let him practice on soft surfaces to encourage him to crawl. (my mother in law watches our kids during the week and she is present for the physical therapy)

Who would have thought that this stinky old, spit up stained  (thanks to the Gordo himself!) rug would have done the trick.

We put a few items in front of him to motivate him to come frontward… and just like that, he pushed his little legs under him and pulled his little chubby hands frontwards and moved! He MOVED FRONTWARDS!

Like a little soldier pulling himself through the battle field, Ethan pulled himself across the living room.

I knew Ethan would get here someday, and he did. He’ll start crawling on all fours when he is ready as well. One day, he’ll just pick himself  up and crawl on all fours.

I just had (have) to believe in him.

And be realistic as well. Understand that your child WILL crawl and WILL walk. But when they are ready. We can work with them every day, countless hours a week, but only our babies know when they can get “there”. This doesn’t mean to not work with them, just don’t stress.

I always knew that Ethan had the strength to do this and many other things, but he didn’t really have the coordination. We cant force coordination on them.

SO to all the mammas out there, be patient.

Your baby will get there. In the meantime, enjoy that your baby isn’t running or crawling away from you! Cause once they start, they wont hold back!

(the old rug... that came out of retirement... ewww....I know!)

and his proud sissies!

100 % Guaranteed

Today, a coworker shared with me that his buddy’s son passed away over the weekend. He was 19 and had cerebral palsy.

How is it that a healthy baby boy ended up in a wheelchair and in deteriorating health… when he was “supposed” to have been born healthy in the first place?

Then I think about my husband’s coworker, who has a young son with MS. A little boy, who we’ve been privileged to have met a few years ago, when he was able to run around, acting just like boys do. And now, he doesn’t run around anymore….

There is my story as well, somebody who wanted to have just one more baby. Boy or girl, just healthy I asked God. Now my baby boy is 10 months old..  and yes, he does have Down syndrome. And in case our definitions vary on what healthy is, yes -he is very healthy.

I guess in my situation, I could have made a choice to abort my child, since there was  that suspicion that my baby boy might have Ds. I guess I could have “saved” my child from pain and suffering as those who know no better like to say.

What if my baby boy didn’t have Down syndrome? What if he was as “normal” and “perfect” as any other child within my womb? But who was going to guarantee me  that there wouldn’t be an injury during birth, or that later in life he wouldn’t acquire any illnesses or life threatening conditions that would have taken “my” little boy away from me.

But that is just life. You take chances, everyday. Nobody can’t predict our future… nobody can guarantee us what tomorrow will bring. No matter the condition that we were brought into this world, it can’t predict our quality of life.

I am thrilled to be the mother of Ethan. I have no idea what tomorrow will be like for him, or for me or our family, but I will deal with tomorrow when tomorrow comes.

One day at a time, one loving day at a time.

If there is anything that is guaranteed, is the love I have for my children.

I will love my children each day more than I did the day before.

I accept all of their differences, all of their little quirks, their imperfections that make them so unique and yes… perfect.

Especially Ethan.

As his 1st birthday gets closer and closer each day, his delays and differences become more apparent. But they are all part of him. I embrace those differences, just like I do his accomplishments.

That is what makes Ethan, Ethan.

  

100% guaranteed to be loved by me, unconditionally.

Ethan's Jackrabbits Wristbands! Order YOURS!

Our 1st FUNDRAISER  is here! 

Please purchase a Ethan’s Jackrabbits wristband!

Embossed with Ehtan’s Jackrabbits on one side and Buddy Walk 2010 on the other side.

Profits go back to our team.

They are going to be $3 ea or 2 for $5 (shipping is a $1), but buy them now for $2.50 ea.  regardless of  one or  more!

Or send your payments using paypal to: emarquez_1@hotmail.com

And specify on the notes what sizes.  
Child, Medium , and Large

Child’s size is SMALL! I suggest for children 4 and under.

This past Father’s day..

This past Father’s day, I honored my husband.

A real father.

My childhood was very different from most others. I cant really say I know what it is to have a father. I did and I do have someone to call dad. I respect him for being my father. I respect my step father as well for helping to provide for us.  And we'll leave it at that.

But for my children, I want them to experience the beauty of love from their father. The way it should be.

-To my amazing husband,

The man who I’ve seen feel every emotion under the sun.

Who would give up his left arm and even his right, just to see his babies smile.

You are a beautiful soul, with every right intention in your heart.

Thank you for giving my children everything in your power possible. For loving them unconditionally.

You loved Gabby when you didn’t have to. You love Andrea even after she has tested your patience and you love Ethan. …You love Ethan, simply, just like that….

You are a great man, greater than you know.

I love you. I appreciate you.

And I honor you, not just on one designated day, but every day, for the rest of our lives.

Ethan’s Jackrabbits!

Buddy Walk! Here we go again!

Well I have yet to make the official announcement but I am already on the GO!

Last year we raised almost $1000 in just 2-3 short weeks! I am FOR SURE we can triple that amount this year.

I have ordered 300 silicon awareness type of bracelets for our team as a fundraiser. They will bring in lots of money, so I hope we can sell all, plus maybe even put in another order. It will make us a amazing net profit!

Other projects in the works are:

A few raffles –

Garage Sale

Chocolate Sale

And I am even considering a lemonade sale in front of an HEB or such.

Any ideas are very much accepted as well! AND any donated services or items to raffle would also be marvelous! (cleaning services, Tupperware baskets, Mary Kay basket/ Avon… anything!)

The Buddy Walk® has three primary goals:

-To promote acceptance and inclusion of people with Down syndrome;

-To raise funds for education, research and advocacy programs; and

-To enhance the position of the Down syndrome community, enabling us to

positively influence local and national policy and practice.

We hope everyone can somehow take part. I hope you understand that you are making a difference in the lives of people like Ethan. There is nothing that I want more than for my son to be valued and treated just like any other person in society. Though he might experience some delays, he will posses great abilities and talents, just like we all do.

Most of the money raised goes back to our local DSAH. DSAH has provided us with support, programs and services that have strengthen our hearts and minds, making us better parents and stronger advocates. DSAH also provides various programs for all people with Down syndrome.

Ethan is the heartbeat in my chest, and I want the world to know that. There is nothing that I wouldn’t do for this little boy. No road is too long, and no road is too harsh.

Motivation is made up of dreams… and Ethan, you are my dream come true.

Please register to walk for our team, or make a donation to Ethan’s Jackrabbits. I encourage everyone to make a donation, even if you only have $5. WE ALL HAVE $5 at some point. I know financially, for us, this has been a real rough year, but I can still manage to come up with $5, even if that means sacrificing lunch one day, or skipping something I know I can manage without for one week. Sacrifice those couple of beers or cokes one day, that pack of cigarettes, lunch, those few snacks from the vending machine! For one week –just sacrifice one thing.

Go to www.houstonbuddywalk.org and search for our team.

Thank you all, from the bottom of our heart, from deep down our souls, thank you all!

Love,

Erika and Ethan’s Jackrabbits

www.DSAH.org

www.houstonbuddywalk.org