MY PLEA – Buddy Walk

I have a son with Down syndrome. A chromosome disorder that cannot be cured. This is the only little Ethan I will ever know, and this is the life Ethan will ever know.

I love my son with every single ounce of love inside of me, with every breath, with all my might.

Thanks to the Down Syndrome Association of Houston, I have been able to overcome many fears.

They have provided us with courses on raising a child with disabilities. They have opened their doors to social events, where we have made lifelong friendships. Monthly meetings full of many resources and answers to difficult situations. Gymboree classes for Ethan to play in a therapeutic manner. Music classes, art classes, computer classes! SO many resources available for people just like my son, and even his sisters who have been able to take part.

I still remember walking into the Resource Center for the very first time. With newborn Ethan in my arms. (heck they have a picture of that very day on the DSAH website!) I remember being so nervous my first time there. I remember my first monthly meeting, and how my eyes swelled with tears as we were embraced by everyone, and I knew I was “home”. I knew that with the support of this great organization and its great members, other people JUST like me with a child JUST like Ethan, that my journey wouldn’t be so rough.  Parents of children older than Ethan, parents who have already shed the same tears as I have, parents who have shed tears that I yet haven’t.  The pioneers who have fought battles I will soon face and hopefully thanks to them, my battle won’t be so bloody.

I know there will be many other battles to overcome in this journey and I know I will be able to turn to DSAH for guidance and resources. Along the way, I will hold hands with other mothers, along the way I will guide others. I will cry, I will console , I will learn, I will grow.

And I need your help.

DSAH is a non-profit organization.

Donations from generous people like you is what keeps these great services and programs going.

Will you please make a donation to our Buddy Walk team, Ethan’s Jackrabbits?

If you can only afford $2-$5, it will make a difference.

Register to walk, it is FREE and it comes with a shirt! And while you are registering, it wouldn’t hurt to donate just a dollar. It’s quick, it’s easy. And if ONE dollar is all you have, we will gladly accept it. Secure payment through paypal, and you DO NOT need a paypal account, just a credit card.

By walking you are standing up for those just like Ethan. Bringing awareness to individuals with Ds, and their right to inclusion and acceptance. Acceptance in such a harsh world.

I am asking for you to sacrifice 2-3hours of one day. Will you please walk by my son’s side, and stand up for my son and his peers.

If you where in my shoes, wouldn’t you want others to support you. Wouldn’t you want ALL of your friends and family to come together. Not only do I face the same obstacles in life just like you do, such as do I have enough money to pay this bill; the kids need this; the house needs that, but I also have to face hurtful stereotypes about my son. I have to fight back tears when my child faces discrimination, I have to FIGHT every single day for things most of you never will.

Ds itself is not scary, but the way society perceives it is. Will you help me change that perception by walking with us?

Skip eating out one day, skip the 6 pack of beer for one day…  dig in your couches, dig in your purses, dig in your hearts.

Do you know, every time we see a new walker or a new donation, our heart lights up.  Will you please light up my heart, and light up Ethan’s life?

Register at:

Houstonbuddywalk.org

And search for our team, Ethan’s Jackrabbits.

More information about DSAH, please visit DSAH.org

Thank you all for your support.

Erika

One Year Check Up

Took Ethan for his one year check up on Wednesday the 25. 30in long and 25lbs 3ounces in chubbiness!

Before his vaccines.

After his shots... exhausted.

The BIG ONE

Last Saturday we celebrated our son’s birth. It’s been one whole year since his birth. One whole year… a short year if you ask me.

Bittersweet it was. I don’t think I felt anything on that day last year. Numb where my feelings. And I remember feeling a lot of fear as they prepped me for my c-section. Several nurses asked me if I was ok. But it was the unknown that was so terrifying for me.

I remember as the on call pediatrician walked into the recovery room, as we awaited our son to be brought to us. I remember her asking me if I have any complications during my pregnancy. Did I have an amnio. They suspect Down syndrome, she said with a look of pity on her face and tone of voice that would have made you think there was death involved.
I nodded my head, with so much confidence and no tears. Yes, my prenatal screening came back positive and we did have a marker for Ds, I told her.
But at that very moment I didn’t really feel anything.

I hate that I felt nothing. I hate that I was very lost and confused on such an exciting day.

But this year, I do celebrate my son! This year, I felt nothing but immense happiness and yes, some pain as well. It was a short year. It flew. But everyday with Ethan was very well spent. Every day with Ethan, we have played, we have laughed, we have made beautiful memories. I can look back at almost every picture and can almost remember that day as if it was just yesterday. Every picture, I can so vividly remember him giving me his cheesy smile to photograph. Every picture I can relive in my head and in my heart.

Make an on-line slideshow at www.OneTrueMedia.com

I am not ready to let go of my baby boy. This little man is so fierce and ready to show the world all the great thing he is capable of! So ready to grow up. He doesn’t let me carry him or cuddle with him. He fights my kisses and hugs when all I want to do is hug and kiss him! At night, I try to force him to sleep in our bed, and he will just not have it.
My big boy wants his independence and freedom. I am nowhere ready to give him any freedom.

We had an amazing party with friends and family. Ethan behaved beautifully, no crankiness or fussiness. He was the perfect birthday boy. Crawling amongst our guest, walking in his walker, weaving in and out between people.
I regret not taking many pictures, but my hands where extremely full. The decorations where amazing, everyone compliment the decorations! It definitely was worth staying up past midnight almost every night for two weeks straight! Plus I even ended up losing 5lbs with all the stress, lack of sleep and eating! So not too bad!

And many thanks goes to my great friend Anabel who helped us out by lending us so much stuff, tables, tent, ice chest/coolers, and she helped me out with the cute goodie bags! The best part is that she offered her help and their equipment and I didn’t once have to ask her for anything! Big MUAH to her! And great big thanks to my mother in law that helped with the food as well! I only expected her to bring the tostadas, but she brought all the condiments and chicken as well! She is amazing!

Thank you all, for sharing this day with us and celebrating a beautiful life. A life with so much purpose!

Ethan with his Buddy Zachery

In his bday pj's grandma gave Ethan.

And the world comes crumbling down.

I’ve been around many other families that have said they’ve lost friends and family after the birth of their child with Ds. I remember thinking, wow, we must be really lucky, everyone is still here for us. That was about 6-7 months ago.

Now Ethan is a few days away from the big ONE.

What a blissful year it has been. This miracle baby, that was supposed to be severely MR, and not do this and no do that before his 1^st birthday. I throw my head back and laugh. The medical community. How can they know it all. How can they know it all about this child so divine.

But throughout the year, we’ve had a few downs. Not because Ethan wouldn’t do this or wouldn’t do that, but due to ignorance from family and friends and coworkers.

I’ve always tried to make it clear about how I felt about certain things. I hoped they somewhat got it. Got it enough to respect me and my son. Whether they truly understood it or not, just RESPECT me.

I’ve come across  awful prejudice throughout this journey.

I’ve had a coworker say to me that she did not give a FCK… how are you going to sit in front of me, a mother of a child with special needs and TELL ME TO MY FACE, that YOU DON’T GIVE A FCK. Does this woman have a heart… DOES THIS WOMAN EVEN HAVE A SOUL! Dear LORD, I pray for this woman! Lord, I cried so much after that moment. It was my 1^st incidence of hate after Ethan was born. I felt so hopeless, I felt that if this is what my son has to look forward to, to hateful people like this, this poor kid doesn’t stand a chance in this world. I cried, Lord, did I cry! At that very moment, I just wanted to give up.  I just wanted to go home and take my kids and just live under a rock. Untouched by this hateful humanity.

Instead, I prayed. And I faced another day.

But now, I see how this life I once knew, with all these people I once knew, I now see it crumbling down. With people’s choice of words and people’s choice of actions,  I have been able to see  who really is there, and who really isn’t.  Many people, who stand in front of me, whose physical bodies stand in front of me and support  us, yet inside they are not even close to caring.

I can be in a room surrounded by family and friends, yet I feel so alone. They can’t possibly know me. They won’t even listen to my pleas for respect!

 A few days before my son’s birthday, I wish I could be feeling extreme happiness, instead I am full of so much sadness.  Sometimes I become angry at myself for feeling like this. And I know when you aren’t in the situation, the situation doesn’t faze you. I guess I was hoping that Ethan touched many lives by his 1^st birthday, especially those lives that share some of the same blood as his.

I am very thankful for the new friendships in my life. Those who have cried the same tears in their lives, those that have held their child in their arms and cried many tears of fear, as they fear how will this cruel world treat their child, when ALL parents regardless of ability, want the best for their children. But when the world is already cruel to children just like the very child you once grew in your womb, the very child whose life you nourished from your own breast, the child you kiss goodnight  every night… it damn near kills you, just to think your child WILL BE FACED with prejudice.

And HERE I AM! Trying to make a freaking difference in this freaking world, but my words fall on deaf ears! I feel so freaking hopeless at times! And when it’s your OWN family and friends, or the very people you have to see everyday, that DON’T GIVE A FCK (just taking the words from the coworker) it tears me up, into a gazillion pieces…  How do I expect total strangers to respect people like my son, when those you surround yourself with don’t even care.

And you can call me SENSITIVE, and call me a DRAMA QUEEN, heck call me whatever the hell you want to call me. I am not shutting up anytime soon.

I am on a mission.

You are either with me, or you are not.

Preview !

The BIG day is just around the corner!!!  I am running out of time!!!! Well that is what happens when you decide to Martha Stewart a Birthday party!  It’s no shocker we are doing a monkey theme for my precious little monkey! 

Hope to see you there!
(had to revise the pic and remove my address and phone, dont want strangers showing up!)