Friday, October 21, 2011

Pumpkin farm and tshirt scarves -oh what fun!

I have a few posts brewing in my head... laziness has just taken over. It's finally cooling down a bit and I want nothing more to do than do nothing!

Finally got my internet to work at home, I am not sure what triggered it to work, I was completely frustrated, calling the internet company (comcast) was NO help and I was just about to stomp on my laptop until magically, there was an internet connection made! Yay!

Last Sunday we celebrated our friends twin's 8th birthday, one of which has Down syndrome, at a pumpkin patch. I dont know what we were thinking (or not thinking) going there with no stroller. Ethan was a complete brat and refused to cooperate, only  wanting to be carried and constantly fussing. On top of a cranky 2 year old it was HOT, but it still was an awesome time. And because of his bad attitude I did not get to take the pictures I had envisioned in my head.

Dewberry Farm - Brookshire, Tx











 My most favorite picture of all, Ethan with the ray of light over him.
 






A great time!


Crafty Mom's Club

Remember the crafty mom club thing I told you guys about, well we had our last session on Thursday were we made tshirt scarves

It was pretty fun and I am sure by the end of fall we are going to be rocking so many scarves, not to mention there wont be a tshirt that will be safe in the house.

                                       I made a braided scarf.
                                  (ignore the hair! I had no                                        desire to be straightening  my                               hair this week!)


My dear friends, more than just coworkers! Anabel - who did the loopy chain one, and Susie who made the stringy loopy one... I just made up those names for the scarves... whatever the heck they are called. 
 and bonus! I also made a bracelet... I am just pure awesomeness...sometimes.

Tuesday, October 18, 2011

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 3rd 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

This old shirt


Sometimes I get crafty.

Today I had a quick lunch at work and decided to attempt some tshirt flowers I’ve been meaning to try forever (well ever since joining Pinterest. I am amazed at how crafty some of these people are -seriously!)

Me and a couple of girls at work started our own club "Crafty Working Mom's Club" or something like that, we were being silly and who knows what we named our elite club! We try to get together a couple times a month during lunch and take turns coming up with a craft. Our first craft project was in the beginning of October and we made Halloween wreathes and the next project is this Thursday and we will be making scarves out of old tshirts. I want to add some flower pins to my future scarve, or to use as hair accessories so I got a head start today.

I brought in this old tank top


















walked in wearing this plain top (today was frizzy hair day, so no, no picture of my face with my moppy  hair):

and had this embellished top at the end: 


I know, it's not that fantastic... but it was my first try and I think it is a good first try. 

I made the little carnation (pompom) looking flowers using this TECHNIQUE
(they didn't come out nearly as cute, then I again I am terrible at following directions) and the rose flower using from this TUTORIAL .

 Since I was at work I gather stitched them by hand, and even if I was at home, I dont have sewing machine anyways! ha!

 













So I hope I have inspired you to do more than just eat during lunch and go make some flowers! 


I promise I am working on a real post related to Down syndrome. 

 

Wednesday, October 12, 2011

So I failed

 I know! I am suppose to be blogging everyday for the month of October for Down syndrome awareness, but some of you are doing a great job and I just didn’t want to steal yalls  thunder! *wink **yalls, yes us Texans have funny words.

Ok truth is my internet is down at home and I just hate having to get on the phone and calling Comcast, be put on hold forever, transferred here and there, talk to people with heavy accents that I do not have the patience to handle because I just want my internet fixed! **disclaimer, there is nothing wrong with having a heavy accent, but if you do, working customer service over the phone just might not work for you. The last time I went 2 weeks without cable in our bedroom, until I finally caved and called customer service, and it was actually an easy fix! So this might also be an easy fix. I just don’t like putting time aside to call once I get home.

Aside from that nothing really exciting has been going on, I haven't had time to gather my thoughts into something meaningful and I am currently reading a book, so that takes away from my thinking and creativity. I rarely get a chance to read and I love reading but unfortunately there are only 24hrs in a day… which at many times is a very good thing! *I am reading Megan’s Way. Half way done, good read!

Ethan seems to be fighting off a tummy bug. Last Thursday he was bathed at school after a nasty runny diaper but then he was fine Friday and Saturday then Sunday it was back and he had another loose bowel last night while sleeping and I decided he should probably stay home just in case (with Gma). They had no school Monday or Tuesday so he didn’t miss much, I just know that if he returns tomorrow he will cry up a storm in the morning and make me feel incredibly bad for leaving him. 


And as some of you know, EATING and SPEECH are our biggest challenges. He gets ST through ECI 3 times a month, I wish it was more, honestly, even if alot of the sessions seem more like play time than anything else. But I do see where he is benefiting in some areas. And I have reached my breaking point with meal times! I am sick and tired of him eating only Ramen Noodles for dinner and lunch. I might be wrong for doing so, but I have resorted to shoving food in his mouth for him to taste otherwise he will NOT even attempt to try the food. I decided that we are going to start all over and going back to baby food and go from there (along with the foods that he already eats). Sunday he had green beans with rice I believe, and he completely hated it. Monday he had carrots with barely and that he tolerated pretty well. I would tell him, "if you want your noodles you need to eat your carrots first" so with the biggest puppy face and a quivering lips he would open up and eat his carrots. He occasionally pushed the spoon away and would refuse to open his mouth at times, but we got through it. And when he finished his portion on his plate, we clapped, danced and praised him and he was so proud of himself. 

I honestly believe that it is all a mental thing with Ethan, along with him trying to show me that HE is in charge. He used to eat real well, out of nowhere he refused all foods but ramen noodles, eggs, select crackers and most sweets (of course). But I am confident that we will overcome this challenge. School is working with him, I am working with him, and by the end of this year I am confident that his menu will be much bigger and healthier.

And that is all the latest excitement in our lives!


-oh the October newsletter for our DSAH contained  THIS POST ENTRY. And I just want to make it clear that I didn’t write that to offend anyone, and it was written way before it was mentioned that it should be in the next newsletter, so that there goes to show that many of us parents feel the same frustration and I am not entirely crazy! Entirely

I have received some relatively good feedback, and I am sure some were offended in some way –again, never meant to offend anyone but if you are somewhat mad at the entry, I suggest you ask yourself why are you offended. We are the Down syndrome family, we fight the same battles and share something so special that not even words could ever describe.


Until next time -when my brain isn't so foggy and I have some pictures to share...
erika 


Saturday, October 8, 2011

Thank you!

Thanks to all that donated to Ethan’s Jackrabbits for my birthday!
I am also excited to say that the wonderful credit union teamed up with us last year has teamed up with us again this year to help us in our fundraising efforts! Thank you so much Houston Texas Fire Fighters Federal Credit Union!
 

*As far as my birthday went yesterday… The hubby tried to surprise me with a surprise dinner with a few people over but things didn’t go the way he planned. All I can say is that I LOVE his effort and so proud of him for trying to do something special for me. Thank you hunny, I know you tried and totally I appreciate it. Like I said before, I already have everything I could possibly ever want or need!  I also partied pretty hard last weekend and plan on just spending some family time with the family.

*erika 

Friday, October 7, 2011

Between courage and envy


In this journey of giving birth and raising a child with Down syndrome, I have been giving the chance to see life from a different perspective. It truly is a gift, especially if before you lived life with your eyes half closed.

There is no doubt of who I was before, a person who was consumed by ignorance, pride and selfish motives and I didn’t have the courage to speak up for myself at times. I was a foolish old rug for others to wipe their dirty feet on.

Having a child like Ethan has forced me to widely open my eyes. I am still ignorant in my own ways as we all are and there is still some pride and selfishness inside of me as well. I am human after all.

But one thing I certainly do have now is courage. I am more outspoken and willing to put myself out there just to make a statement in regards to my son and others like him. But lately I wonder, have I pushed people away…  Are people annoyed by my antics as I demand respect for individuals like my son… why do people react so negatively to my pleas? And as I ponder those questions, the answer slowly reveals itself.

Jealousy.  Of course.
It’s not me… it’s them.


v Being courageous can be intimidating to those that do not have the courage. We look at superheroes in awe, because they are fictional characters. They posses powers we jokingly yet secretly wish we had.  If there was a real superhero flying through our skies and saving lives, others would be greatly intimidated and jealousy, like a wildfire, would spread.  Those envious people would proclaim, “They aren’t that great”, “I can do that better…”and so on.

I am far from ever being a superhero, but I do have courage.  It sets me apart from others who are clueless as to what my life calls for. I wish they knew of the difficulties I’ve had to face, the difficulties that Ethan has had to face, and the difficulties that will continue to arise.  I want others to see that what I do -I do for my son. Maybe others look at me and say to themselves “I could never do that…raise a child like hers…” Maybe there is guilt in their hearts for past decisions and if so, seeing my life unfold with so much pleasure must be hard.



I feel the tension, I hear the snickering, and I see the stares….  But I don’t have to be tense, snicker or stare to confidently stand up for my son.

Instead of being envious, I plea others to see my side.  I encourage others to be courageous enough to hold my hand and walk with me on this path instead of judging me.

 -erika 




**Internet is still down at home and still behind one entry ( I am blogging every day in the month of October for Down syndrome awareness month, 31 entries for 21 -31 for 21….)

***Where did this entry come from?:  I am clearly treated different at a certain place, and I willing to bet it has to do because of Ethan and how I openly talk and educate about his diagnosis and who he is. It is much easier to look the other way than to stand up for what is right, and it is so much easier to be envious than to reach out and offer support.


Thursday, October 6, 2011

Ethan’s Jackrabbits 2011 – My birthday wish

Ok- I did NOT forget to blog yesterday, my internet at home wasn’t/isnt working! Ahhhh!!!

I had my blog entry all ready to go in my head! But that can be saved for another time, because today is my BIRTHDAY! And I have a BIRTHDAY WISH! That all my friends and family, including cyber friends donate to our Houston Buddy Walk team, Ethan’s Jackrabbits! Our Houston Buddy Walk benefits our Down Syndrome Association of Houston.

WHAT is the purpose of the Buddy Walk? 
1) To promote acceptance and inclusion of people with Down syndrome.
2) To raise funds locally and nationally for education, research and advocacy programs; and
3) To enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice.

What does the Down Syndrome Association do for our community? 
At the Down Syndrome Association of Houston (DSAH), our mission is to build a brighter future for children and adults with Down syndrome (DS). Each year, DSAH continues to promote awareness through community outreach programs, monthly support meetings, semi annual educational conferences, and social events for the DS community.

Friends and family, I do not need anything that money can buy. EVERYTHING I could ever need and want comes in a package, named Gabriela, Andrea, Ethan and Santiago. All I am asking for is for you to so kindly consider donating to the Houston Buddy Walk.

CLICK HERE TO DONATE TO ETHAN’S BUDDY WALK TEAM.

Thank you!

-erika
(I will try to get another blog in today)

Tuesday, October 4, 2011

FACT - Moms of children with Ds

FACT - Mothers of children with Down syndrome are still pretty much human and are still their own person.
Although their lives might have been enhanced in many ways, they are still pretty much " normal".

I am more compassionate and loving and aware of the world around me, but I still get moody and angry and I do curse from time to time. The kids occasionally frustrate me and so does the husband.

Since Ethan I would say that I am more of a confident person but I still have my insecurities and pretty much still a women that is overly concerned with her weight and with getting OLDER!!! And as my 30th birthday is only days away, I cant get the thoughts of wrinkles and saggy body parts out of my head!!!!

I have feelings, I do get hurt, I am not much more special or stronger than the next woman, God didnt give me Ethan because I was.

I like to dance, although I suck, I love to read, although I never have time... I love to do crafts although my attention span probably compares to Ethan's.

I am a better enhanced person than the old Erika, but I am still pretty much Erika. Still human, and a wife, mom, sister, friend and much more and I am much better at it now.

Just like Down syndrome does not define Ethan, it doesn't define my life either. I was selfish once and feared that my life would end because I would have a son that was different. What i have learned and experienced has been far from what I ever feared. My life is amazing and my son is not so different.

-erika

Monday, October 3, 2011

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

Sunday, October 2, 2011

Party like its 1981!!!

What a better way to kick off October, Down syndrome awareness month, than to attend a fundraiser event for Ethan's school last  night.

Totally Awesome 80's Bash... was totally awesome! I cannot even begin to tell you about all the awesomeness!

And whenever the husband dances, that there verifies that it was a GOOD TIME. He was actually the first one to jump on the dance floor (the first one of us.. there were plenty on the dance floor) and I had to make sure no one stole my rock star so I had to get up in there. 80's music is the perfect music for....  people who have no rhythm...  yes, I said it... and you know its true so dont hate!  So I loved every minute of it because I am the hispanic girl with no rhythm, there was no pop-lock and dropping it, no tootsie rolling, no wobbling, no complicated move to do, just a lot of head swinging and moving my feet left to right and right to left... and even though I lack dancing skills, I LOVE TO DANCE. My feet are killing me this morning!

The band that was playing there was pretty awesome, I've heard about them before but had never seen them before. Spazmatics just rocked the Firehouse Saloon!

Thanks Rise School! Party was fantastic ad I hope yall raised a lot of money! Although I was born in 1981, I am glad my teen years were not in the 80's. Big frizzy hair and blue eyeshadow does not work for me.



 


 I went with the oversized boyfriend shirt with a jacket look and leggings.




 hmmm.... Do my eyes look a little glazed  over....



That there my friends is Jeff Bagwell... dancing with his wife. I didnt want to be all stalker-ish and take a zillion pics of him, although I was told that he would have kindly taken a pic with you if you asked him.





Saturday, October 1, 2011

October is Down Syndrome Awareness Month

Are you lost as what to do or how to kick off this month? Write a letter, an email and send it out to your friends, family and coworkers.

This was my email I blasted to the entire company I work for:

Hello friends and fellow coworkers!
October, aside from being Breast Cancer Awareness month –a great cause that I sincerely support, is also Down Syndrome Awareness Month.


As you all know, my son Ethan who just turned two in August was born with Down syndrome. And in honor of him, I would love to share some facts about Ds.


1 in every 691 babies is born with Down syndrome, the most common type is also referred to Trisomy 21. Ds is the most common occurring chromosomal disorder. Ds occurs at the time of conception and nothing the parents do before or at time of conception determines if a the baby will have Ds. There is no known cause of why Ds occurs.


-And to be more accurate (and complicated), there are also other types of Down syndrome besides Trisomy 21 that are not caused entirely by a complete triplication of the 21st chromosome. There is Translocation Ds (were a piece of the 21st chromosome breaks off and attaches itself to another chromosome) and Mosaic Ds (which happens after conception during cell division were a cell goes astray during division causing a triplication on some cells but not all.) Regardless of which type it is, it does not determine how the individual will be affected.


Approximately 4000,000 families in the United Stated have a child with Ds, and about 6,000 babies are born each year. With more and more babies being born each year, there is a need for widespread public education and acceptance.


Most people with Down syndrome have IQs in the mild to moderate range of intellectual disability. Recently a law (Rosa’s Law) was passed to change the term mental retardation to intellectual disability  due the negative connotation associated with the word retard(ed). (Please reconsider using the word, it is dehumanizing and offensive to individuals with developmental disabilities. And if you cannot get yourself to stop using the word, out of respect I ask you kindly to please refrain from using the word in my presence.)


People with Ds have a higher incidence of certain medical conditions, such as heart disease, thyroid disorders, Alzheimer’s and childhood Leukemia.
Ethan was born with a  minor heart defect that his cardiologist believes has healed itself, if not he will require heart surgery but the chances of that are very slim, he also has hypothyroidism which will be treated with daily medication.


Aside from that, Ethan is your typical rowdy-loud-super hyper-never gets tired 2 year old. His biggest challenge is speech, but with therapy, sign language and lots of patience we will overcome this obstacle.


He is more than a blessing in our lives and no one should ever pity or feel sorry for us or any other family that has been blessed with an individual with Down syndrome. The initial shock of the diagnosis at birth was devastating but through the grace of God and the community and friends and family, we overcame those difficult days and now see the true beauty that a child like Ethan radiates. Yes our lives are slightly different with more doctor appointments and therapy sessions, but it is not that much different than anyone else’s.


Thank you for reading!


Very proud mother of a child with Down syndrome,
Erika



You can support our Houston Buddy Walk team,
benefiting the Down Syndrome Association of Houston:
Ethan's Jackrabbits
 *******

Speak from the heart and spread the word!


-erika