W E L C O M E 2012 (picture heavy)

WELCOME 2012! W E L C O M E!!!!

We brought in the New Year with friends we love and who are more like family than anything else, drinks, food, games, new traditions and love and hope.

Our wonderful hosts:

In all honesty, 2011 wasnt all that bad. There were many blessings, my realizations and lots of personal growth. The end of 2011 was full of much  hurdles and as I drowned in my sorrows and pain, all I wanted was to breathe.

But here I am! 2012, and alive and well for the most part.


2011- Started off with a cruising baby and ended in a toddler that NEVER STOPS running.
Two girls who are amazing and I am more than appreciative for having them, more than I could ever describe and more than I could ever tell them in person.

I had resolutions for 2011, but many of those hopes, wishes and goals ended up being derailed. A main one was to establish a connection with God, but once Ethan starting walking and his stranger/separation anxiety made it real difficult to sit through Sunday service. Many times I left church feeling as if I wasn't getting anything out of attending since a lot of my attention was on Ethan. And he has Down syndrome, he isn't your typical 2 year old you can "talk" to and bribe to hush or stay somewhere. I felt real guilty and it was a real tough time for me. Ethan was the reason I started to attend church in the first place, I am so grateful for his life, so grateful to have been given the title of Mother. My heart aches to return to church and I am hopeful that it will be this year! No- I am not hopeful, I know I will return this year. 

January- December 2011

No doubt it was a good year!

looking back, it wasnt so bad. Just blessed with lots of hurdles to make us stronger at the end.

Happy New Years guys!


-erika

He's not Downsy... he's a Warrior

I’ve been a crying mess these last few days.  There have been so many good things and bad things, and things just out of my control, leaving me feeling excited, mad, angry, hopeful, hopeless…. 

One of the things that just has me straight up angry is the whole ridiculously stupid movie, The Change Up, controversy. (SAVE YOUR MONEY, go watch the Smurf’s! haha)

**I’ve admitted before, I am not so easily offended by the word Retarded, especially when people mean no offense. I still don’t like it and it makes me cringe; I will speak up and say something in most cases. IF you are a good friend and/or family member I am hoping I never have to say anything to you (OR YOUR CHILDREN) because hopefully by now you have either realized it really is an ugly word, or you have learned to walk on eggshells around me (which I rather you not and just learn to get the word out of your vocabulary.)**

And in case you have been a hermit this past week or you are not an member of the “disability” community you might not know what I am talking about :

There is a scene in the movie where Ryan Reynolds character visits his long-time friend, Jason Bateman’s character, he sees his twins in their high chairs and says, “Why aren’t they talking –what are they retarded?” then “and this one , he looks Downsy.”

Seriously, who the hell talks like that… real life or a movie? Even before Ethan I would never dare ask anyone if their kids where “retarded” or “Downsy”… trash trash trash! And I’ve never even heard of that term pre or after Ethan… THANKS stupid trashy movies for throwing more slurs out there for  other dim-witted people to use. And the fact that they specifically were making fun of Down syndrome is infuriating 

But then what added to my emotional mess is how I have a dear FB friend (yes you Erica!), whom I have sadly not met although she lives right outside of Houston, whose 17 month old is recovering from open heart surgery.  Overall he’s seems to be recovering fine, but some of her statuses have just broken my heart. (Please continue to keep them in your prayers!)I know many parents of children with Ds who  have been down this road, some of their children had open heart surgery at just MONTHS old. I cannot even image the fear and worries that accompanies such an event. And honestly, we are still not 100% sure Ethan might not need heart surgery, granted it wont be open heart surgery, and we wont know until he is 3. 

And it JUST angers me how our children are the BUTT OF MANY JOKES. After our children have to endure such complicated  and risky procedures such as open heart surgery… Our children are at a higher risk of leukemia, heart diseases, thyroid, hearing, vision problems.  And at the end of all of this, they look at us with a smile, full of love, hope and determination.

My sweet little darling that I love more and more with each heart beat. He, along with his peers with Ds, has had so many challenges and it is so confusing for me to see how our children ended up as being a joke.  Because maybe they look a little different? Because they might talk a little different? Walk a little different? -Ha! and I laugh… I laugh/cry at that thought BECAUSE damn it, it wasn’t easy. I remember holding Ethan up against a wall… “come on son, walk to me.. come on baby… you can do it…”   and just staring into his eyes, anxiously waiting for that first step.  And yes, he might walk a little different, but he’s walking. And I’ll take that. It wasn’t easy.

He struggles to talk. I know he wants to. He just can’t. So in the end, what if he does talk a little different… it’s ok, at least he’ll be talking. At least he’ll be able to tell me he loves me. And really, what mother doesn’t want to hear that, no matter how it comes out. 

Recently, we were lying in bed watching TV, a commercial comes on with a doggie, Ethan jumps up and puts his tiny lips together and makes some sort of humming sound, he was trying to bark.  My heart soften and the biggest smile spread across my face. 

Barking, along with meowing and moo’ing came natural to my girls at his age, I never thought ONCE, when will my little girl make a “meow” sound… IT JUST HAPPENED. Yet, here I am wondering when will Ethan meow. 

But somehow Ethan and everyone like him are targets and victims of cruel jokes. And somehow society has made it acceptable, thanks to ridiculous movies like The Change UP.

Well it is not ok to make fun of my son. IT IS NOT OK. He is a human being. He is not less valuable. He and his friends are WARRIORS! 

I don’t know how the rest of world overlooked that fact. 

Tell me how you really feel (part 1)

(This post is being divided into 2 entries, because it is super long. Longer than I intended it to be, yet not everything I want to say.)

The last post that I wrote… it wasn’t supposed to have ended the way that it did. There was more I wanted to say as to why I haven’t been blogging as much but I just couldn’t get it out.And its just been boiling up inside of me.   

One of the reasons I do not post much is because sometimes I don’t have the same feelings as other parents with children with Ds around Ethan’s age. (I have found as your child gets older, your feelings shift as you get to experience different things in your journey.) But I am just getting to those other phases a little sooner than other parents. NO, I am not saying everyone will feel the way I feel when their kids are older. We all have different feelings and views on our children, Down syndrome or NOT.

I am an aggressive parent. A no nonsense type of parent. I expect A LOT from my children.  I believe in tough love and yes my children better have a reason to cry about if they are crying.  That is just me so naturally I am not any more different with raising Ethan. I expect a lot out of him as well, so screw you Down syndrome because I am not cutting Ethan any slack! Ok I am lying, he does tend to get babied just a tad more than his sisters were at his age, but he is too darn cute. I cave more than I like to admit, BUT I am still pretty aggressive when it comes to parenting and Ds. 

And if you know me personally, you would know how much I love my son. Not only my son, but all children and adults with Ds. I am passionate for the Ds community. I try to support not only the babies and small children, but the adults as well. It is very important for me to support other adults. One day Ethan will be an adult, and I hope others will reach out to support him in whatever he does as well. I can’t expect others to do that unless I am doing the same for other people’s children.

Back in June I attended a fundraiser night to watch our young adults in our Ds association performing some pantomime acts to Michael Jackson songs.  The acts were phenomenal, but the lack of support (from the Ds community) was bothersome. The only other people who attended were other parents of the individuals performing. Everyone seems to get excited when they see a character with Ds on tv or a child in a magazine with Ds, but when actual events are going on in your own town and you have the opportunity to support these individuals from your very own town, no one bothers to show up, is nothing short of bothersome.

 (hard to take a good pic from afar and in the dark... but they were awesome! Standing ovation from the crowd!)

Recently I put together a fundraiser shopping event with an online store that sells Ds awareness items…  it was a  6 week thing! They then donated 15% of the sales back to our local organization… Do you know how much money we made?… $23.  They had 3 sales in those 6 weeks that benefited our organization. An organization with over 1000 people, only 3 people made a purchase. One of those people was me. And I know firsthand how popular this online store is. I have friends buying from there at all times, yet in 6 weeks, I could only get 2 other people to buy from a store that sells Ds items as well as employs individuals with Ds, I wanted to cry. I was simply embarrassed. 

I hear people cry about the lack of community support and services for our children, but I definitely do not see other people jumping up willing to do more. I understand not everyone is in the position to monetary help out, but there are so many other ways other parents can make a difference. Speak up, spread the word, advocate.

That day, I simply sat at my desk for hours. Not able to comprehend anything after that. At that very moment I was at to the point of just giving up. If other parents don’t care, why should I care? But then one look at my amazing son is enough to keep me fighting and pushing. And by fighting for him, I might just win one day… and not only will we be the only ones winning, but the entire Ds community. You might just thank me for my aggressiveness later on.

(to be continued!) 

 (just some sun set pictures... always brings me peace.)

I can breathe

One of my main reasons I started blogging was because I felt so much inside. I had a variety of feelings that had built up inside and new ones accumulating on top of those. At that time, going to friends or family members just seemed pointless. They had no idea what my heart was feeling. There was no way they could possibly understand whatever initial shame, disappointment, grief, and LOVE I felt or was feeling. 

This blog became my outlet. 

Then my next mission then became to show everyone how “normal” our lives were… then recently I realized that maybe our life wasn’t so normal after all. But it was OUR normal. And I was more than satisfied and content with that.  My life… our lives are genuinely and uniquely different. 

And as Ethan nears two years old, I have grown a lot. And I have had many epiphanies along the way.

Now, I am not so easily offended by many things I once was when Ethan was under a year old. I’ve learned that not everyone means to offend you. I’ve learned that not everyone can understand, and not everyone is willing to nor do they care to understand your circumstances. You learn to roll with the punches. You learn when to speak up and when to let things go. Your best friend sometimes is no longer your best friend. And those friends you lost communication with over the years, appear in your life again to offer and show you their support.

Old friendships are rekindled and new friendships are made. You meet other people you would have otherwise never met. They become family.  Your future is being rewritten. 

For the first year after Ethan was born, I would cry whenever it was our turn to talk about our son and our experience. Not necessarily because we were sad, but the immense feeling of love was so new to us. Now I can easily hold a conversation and not one tear is shed. It’s still an immense feeling of love but you learn to have control over your feelings, whether they are sad or happy ones. You are stronger now.  Your Heart still leads you, but Logic remains right besides your Heart. 

Most importantly you know you are not alone. 

Those gloomy dark days don’t exist. Maybe there will be days when there will be dark clouds over you, but never to the extent of those first days or months. 

The cold hard fact of Down syndrome aren't so scary anymore, or at least you learn to make the best out of it. It TRULY isnt the end of the world. 

I can breathe…with ease. And if you are new to this journey, I promise you too will be able to calmly and collectively breathe one day. Whether it be tomorrow, next month or the next 12 months…

Erika

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.

Spread the Word to End the Word 2011

Ever since the birth of my son, Ethan, I have developed many extreme passions.  One of those is my passion for respect for everyone, including those with Down syndrome and all other “disabilities”.

I urge you, if you have not done so yet, to take the pledge to remove the R word from your vocabulary.

You can do so by visiting   http://www.r-word.org/    

Take the pledge and spread the word to end the word.

Be a fan of Respect, Friendship, Unity, Acceptance, and Inclusion.

I know I am. 

Why is the R word hurtful? When people use the term “retard(ed)” to refer to someone as being stupid or dumb, it is as if saying people with actual intellectual disabilities are stupid or dumb. The term Mental Retardation was never meant to be used as in insult.  My son is NOT stupid or dumb. 

Next time you use that derogatory term, think about those you are hurting. 

You are hurting me, my husband, my daughters and the light of my life, Ethan. A human being that has every right to be respected.

Previous posts of mine in regards to the Rword:

But Please Respect Me...

Sometimes Painful...

Victory on the Battlefield...

My Amazing Daughter…

Other websites of interest:

Spread the Word to End the Word Website

Special Olympics Website

Special Olympics Blog 

Don't be a fan of hate. 

(added a picture of myself "myspace" style)

 

The $1 Challenge!

I challenge each and every one of you to take one minute out of your day (truly one minute...I timed it for you because I know how busy each of you are.) and pledge $1 to Ethan’s Jackrabbits.  I know how much everyone loves a good sonic drink (or beer or whatever daily treat!).  Just give that up for one day and help change the lives of many!  The challenge does not stop there.  After you have signed up, forward this email to everyone in your address book.  If 100 of my friends do this and 100 of their friends do it as well...We could raise $10k more! Direct link to Ethan’s BW page:

https://www.syssolutions.com/fr/DSAH/2010BuddyWalk/EthansJackrabbits

Every year, the Down Syndrome Association of Houston (DSAH)host the Buddy Walk (their biggest fundraiser of the year). The Buddy Walk promotes awareness and inclusion for those living with Down Syndrome. Money raised  benefits the DSAH, which helps those with Ds and their families by providing resources, Gymboree for the babies, social events for the adults, respite care, educational programs and so on.

We are 3 weeks away from the Buddy Walk and the event is still over $80,000 away from reaching its goal! Without proper funding, some of these programs will be taken away from our children! Please help us help our children!
Thank you all for all of your efforts and support!Feel FREE to share this blog!


(thank you SW for this great idea!)
(31 for 21 - post # 13... motherhood got in the way...)

Happy (BELATED) BIRTHDAY - To Meee

Somebody rained on my parade yesterday… but had my day continue to have been full of sunshine and birds tweeting, this is how yesterday’s post was suppose to have gone (please note, today is DAY 7):

         

Day 6 of this 31 posts for 21 (T21 – AKA Trisomy 21 – AKA Down Syndrome), where I post every single day in the month of October (October is Down Syndrome Awareness Month).

And not only is it JUST day 6, it is also my 29 28 BIRTHDAY! Or something like that. Yup, it is!

And another thing today has been is a GREAT day!

I woke up this morning, and I didn’t have more extra wrinkles than the day before! A gray hair didn’t just stand up straight in the middle of my head. And I definitely do not look a WHOLE year older than yesterday.

And I was ALIVE and in great health, and so where my kids and my husband!  

Every single morning, it is a ritual in our house, from my bed I yell out “GABBY, WAKE UP” .. every morning, she replies with a sleepy, “ok – I’m up” but today, without sparing me second after my holler, she replied in her usual sleepy voice “Happy Birthday Mom”.

My little girl loves me. (Both of my girls love me.)

Andrea made me a beautiful birthday drawing straight from her heart and Gabby gave me a card. I was unable to open it till I was at work. Once I was comfortably sitting at my desk at work, I carefully opened the white envelope with lip gloss kisses on the front… that now looked like grease stains. …It filled my eyes with lots of happy tears.. You know what, I think I (and daddy as well) have done a great job raising this kid.

Today is full of a lot of “and’s” that is for sure.

….AND I even made the perfect choice of wearing stretchy pants today, cause guess what, my dear friends (they are more than just coworkers) made sure to keep me well fed today!

I was brought a huge yellow cake with chocolate frosting made  with real Hershey’s!!! AND I was taken out to lunch and overstuffed! AND my coffee was brewed and ready to go, for both the morning and afternoon coffee breaks!

…you hear that, that is my heart, full of love, beating rapidly with lots and lots of love.

I misplaced my wand today. That was a real bummer. I think someone hid it from me so I wouldn’t be sneaky with it. Today, with that wand I would have turned those coffee cups into margaritas!

I have learned a lot in the past 20something (haha- yeah 20SOMETHING is right) years of my life.

I’ve had a rough life, I wont sugar coat anything, but if there is one thing I know, it is that this past year has been the greatest of them all. AND I only anticipate them to getting better.

Happy Birthday to ME… AND may the next 20something years be just and even more amazing.

(pics to be added later)