Difficult – sometimes, Illogical –NOT AT ALL

This past weekend I was unfortunate to have to hear some pretty ignorant comments. When I first sat down to write this post, I was pretty livid and bothered, but the more I thought about it, it made sense. Not in the, “oh that makes complete sense, they have a point…” way, rather “I need to remember who these people are and their past comments and actions, of course they made such a comment”. 

First I thought… maybe… I haven’t made it clear to those around me what a blessing and PLEASURE it has been to have a child like Ethan. Maybe I haven’t made it clear that I LOVE ETHAN with an indescribable love and that we would love another child like Ethan.  Maybe it hasn’t been obvious in the way we live our lives how “normal” it is. I am pretty outspoken about how I feel about Ethan and what he means to me and my family, at least I thought I was. Originally I was baffled that someone that is part of Ethan’s daily life still doesn’t completely get it.

THEN I remembered how these people were so upset when we announced our 3^rd pregnancy. Ethan was our only planned child and we were so thrilled when he was conceived, but not everyone congratulated us. There were some people who were clearly upset and cried at our news. They asked “why” and “how could we do this to Andrea”.  They deemed us selfish for wanting to expand our family. It’s been over two years and I had pushed that experience far deep into the black corners of my memory. But with this resurfaced memory, I was able to remind myself to not take complete offense to their current ignorance. 

With all of that in mind, here is the story -This person was talking to me about a certain parent(s) in Ethan’s classroom. A mom and dad to a beautiful little girl, and clearly this little girl is the center of their universe. The way her mom and dad watch her as she plays just makes them glow with pride and love. Without a doubt they love that little girl with the same fierce love that I love Ethan with.  And the mommy is pregnant.

“poor young girl that is pregnant… she seems so young… I told her she is going to have such a hard time when that baby gets here…” said this person to me.

I sat there feeling a little lost, not exactly understanding where she was going. I thought to myself, yeah, having a newborn and a toddler can be a little tricky, but not to the point of feeling pity on them.

And the next comments were (from the other person in the room), “it’s just illogical to have another child after your first child with Down syndrome.”

I was baffled and completely lost for words, especially since we were speaking in Spanish and my Spanish doesn’t go beyond Spanglish. I wanted to go off and tell them how untrue that statement was.

They also mentioned how illogical it was since your odds of having another child with Ds is higher, and how it unfair it would be since your child with Ds would require more attention…. It just wasn’t logical.

I just sat there and kept looking over to my husband… waiting for him to say something… I was lost, confused and not sure what to feel. And I am not sure if the husband was also in shock or if he was trying to ignore the conversation but I couldn’t read his face and he didn’t speak a word!

Who are they to say that it is illogical? And why shouldn’t a child with Down syndrome have the 

right to grow up with a sibling? And why shouldn’t their parents have the right to have a family as big as they please.

 Down syndrome is a chromosome condition that our children are born with, not a life sentence that limits how people should live life.

We have plenty of friends who have joyfully brought another child into this world after their child with Down syndrome… who is to say they don’t deserve that happiness.  I agree that it might be difficult at times. Gabby and Andrea are 3 yrs apart and we had our difficult moments…  and there was no Down syndrome in our lives then. We had Ethan five years after Andrea, and we’ve had some of the same difficulties we had with the girls, NOT related to Ds, and sure we’ve had some hardships that have been related to Ds. But ILLOGICAL – no. Would it have been ILLOGICAL if Ethan had been our first and then later conceived Andrea and Gabby… NO.

It was complete nonsense and I slowly grew angry at their words, but I replayed their words over and over in my head, and the past memories resurfaced. I really can’t have hard feelings for these people, it’s just who they are. I am bothered that she has told the young mommy that she feels for her and how hard it will be for her (especially since she meant it in a “because you have a child with special needs way…”), these are people who genuinely love their child, and they do not need pity from anyone. 

It’s up to each family to decide what is best for them, not some random person who thinks they know better.  It’s not illogical to have dreams and dare to live your dreams. 

It completely reminded me of the story I read last year, the one that lead me to write about Ethan not being a burden, she was mother of a child with Down syndrome and was again pregnant and readers chastised her for being “selfish” for wanting to bring another child into this world after her first child had Down syndrome.

I was hurt to realized that people with those views existed, but I never knew that I was facing a person every single day that had those very same views.. somebody that Ethan loves dearly. Somebody that Ethan tightly clings to and daily shows them how amazing he is… but they still think that.

**And you might have figured out who I am talking about and I am NOT in any way talking bad about these people. I love these people dearly and I know they love Ethan with a great passion. I was just taken back. Maybe it’s the old school mentality some people have, those whose visions and beliefs you will never change, even if you throw all the positive things their way. I am hurt that they have those views. Ethan hasn’t shown to have any extra special needs that require attention at an astonishing level. Sure, some kids with Down syndrome have some extra ordinary needs, but that could be with any other condition, even a typical child that might be born with some medical needs.

It doesn’t mean that life ends there.

That little girl in Ethan's class came into this world with a great purpose, not to be pitied and dehumanized by being treated as being incapable of a normal life and to be told that it is illogical to have more siblings. God bless her and her family, she will make an amazing big sister!

-love

erika

I'll say it again...This boy is NOT a burden!

I have written about this before (2010 post)…. But my feelings are still the same.

Let me repeat it: 

Ethan is NOT a burden on us or his siblings. 

Yes, he frustrates me and he intentionally pushes my buttons, but so do my girls. And if he frustrates me is because he refuses to eat what I want him to eat, or when he fights me off to dress him for school, or how he thinks he is being so cute when I fix his hair and he goes and messes it up and laughs…or how about when he likes to get completely naked and run around the house and scoot his booty all over the place. 

Yes, he makes his sisters cry, he breaks their stuff and yanks their hair, or how he likes to wrestle and runs up to his sisters with his tiny hands clasped together over his head and powerfully smacks them on the head and how he loves to annoy them by turning the tv off as they are watching their favorite show. BUT I am most definitely sure all little brothers do that to their sisters (or some of it). Especially if they are as cute as Ethan, they know they can get away with murder. 

                                                                                          

 

They are always eager to run to him!

Sure, he is still little and he is “cute”…. And yeah he might outgrow his cuteness one day (as I once read the following from a person as she tried to justify the abortion of a child with Down syndrome) and Ethan might be a “low functioning “person with Ds and I’ll be stuck changing diapers on a grown man for the rest of his life –seriously someone once wrote that. Truth is no one has a future telling magic crystal ball. I have absolutely no idea as to what tomorrow brings. I do not know off all the great capabilities that Ethan possesses until we are at a place where he can show me…. so just the way I do with my girls, we will take each day, love unconditionally, strive for the best and go from there. He will never be a burden because I will never see his life as a burden. Whatever challenges we run into, we will tackle them just the same way I will have to tackle challenges with the girls.

And I am sure his sisters will never give up on him as well. Maybe one day they will curse Down syndrome for the difficulties it might cause for their brother or even them, but we will all make it out alive and much stronger.

It is a shame how there are doctors that will tell their patients that abortion is the best option because their unborn child with Down syndrome will be a burden. And as a mother of a child with Down syndrome I can attest and say that Ethan is far from ever being a burden. 

So be on the lookout for next’s year post of how Ethan is still not a burden. I will preach it and live it for the rest of my life.  

-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)

 

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.