I Hate Down Syndrome

Yes. I hate it. I'm sitting here looking up the definition of IEP's. Thinking about having to take little
Eddie in just a couple months to be evaluated by the district for placement in the preschool at three.  Picturing him going through this process, physically makes me want to vomit. I had Dominick evaluated last year, so I know the process. That's the problem. I. Know. The. Process. I watched Dominick ace all the "tests". I will have to watch Eddie ... Watch him not even understand the questions. It's just so easy to be home with him, to keep him in my safe bubble. Out in the world, no. I'm not ready for that. I don't know if it's because I know I won't be able to be there at all times to protect him, or if it's because it will bring to the forefront how delayed he is. I'm so torn. Torn between worlds. My comfortable, safe world, where Eddie is just Eddie. And the scary real world where Eddie has Down syndrome.  Of course, Eddie always has Down syndrome, but Down syndrome in the real world is way different than Down syndrome in OUR world. Maybe that's just because neither Eddie nor I have been out in that scary real world yet. The world of IEPs and labels. The scary world of SCHOOL. I don't want him to be different. I don't want him to be judged. I don't even want IEPs or evaluations. I want him to be my baby Eddie and stay with me where he will always be safe. With me, he doesn't walk yet and it's ok! With me, he doesn't talk yet, and I don't care! With me, he's just Eddie. Out there. Out there he's a diagnosis. He's a list of things he's unable to do. So. Yes. I hate Down syndrome. But not the Down syndrome that lives in my house. The one that lives in the big scary world, full of labels, judgement and sometimes, ignorance.

I have a few months to mentally prepare for this next step in our journey. But for now. I'm not letting this angel out of my sight!!

Overwhelmed

So, it's been a long while since I've blogged. My life is so busy and crazy sometimes that I forget to pee and remember hours later. Yeah. That actually happened yesterday.
Something about the holidays is getting my emotions all stirred up. I feel like I'm constantly in panic mode lately. I could cry at the drop of a hat. When I get like this, two things happen: I get overwhelmed and become paralyzed and I start to dwell on the negative. Today I am feeling the reality that eddie is now two and still not bearing any weight on his legs. Eddie has to have therapies several times a week, and the scheduling of those therapies alone can send me into a tailspin, leaving me curled in a ball in my bed. With that thought comes immense guilt. The mommy guilt times a million. I just do not do enough for him. I should be on the floor with him, helping him, pushing him. Instead I am stuck in the mindset that he will do it when he's ready. Sure, that's partly true, but the reality is that he needs me. He needs to be constantly challenged and assisted in order to become strong enough to withstand his own weight. There are days, like today, where I feel like an awful mother. I think everyone thinks of me as this perfect mom because I am always posting about his accomplishments. The truth is, I may be a great mom, but I am far from perfect. Maybe I'm being too hard on myself. Maybe I'm not being hard enough. I need to suck up this feeling and kick my ass into gear again. Since our vacation to NY I have been stalled. Not only with Eddie, but my own fitness is being effected as well. I have lost the drive I had just a month ago. I keep saying I will start over in the new year. It's just an excuse to put off my own health and fitness. I just wish I knew what it is going to take to snap me out of this rut. Maybe putting it out into the world will do it. I could go on for days about all the other things taking up space in my mind and heart, but I'll leave it at that for now. Anyway. Say a little prayer for me, please.

Calling all friends and family!

I just want to quickly throw this out there, this may get long. I apologize in advance. Something happened tonight that got me thinking. I went 35+ years never knowing anyone with Down syndrome. I've heard of it, seen people with it, but it never had any connection to make with it emotionally. Obviously, that's changed, duh. And because of Eddie, those of you, my friends and family now DO HAVE that connection. You have a face to connect to, a smile that comes to mind, a tiny human being you can now relate to. An image of Eddie, so beautiful, pure, innocent and sweet to conjure up when someone mentions ds, or worse, tries to blindly make fun of. I have a very personal favor to ask of you all. Can you please help me advocate and stand up for kids like Eddie with Down syndrome or any special needs? I realize how it could easily roll off the backs of someone not affected or connected to someone like Eddie. But, that's not us anymore.  Eddie has changed everything for me. I'm no longer just a mommy. I'm a "special needs" mommy. I'm my sons first advocate, but hopefully not his only one. Eddie has given me more gifts and blessings than I dare to count. It makes me so happy that he can touch your life, in even the smallest way. So please help me spread the love!!  Eddie and I thank you!! 

It's been so long. (How long is it?)...

..that I forgot my blogs name!  That's pitiful.  I don't know why I wait so long in between posts.  Too much has happened.  I feel like I start every post with that exact sentence.  Oh well, let's just start with today and I will try to post once a week.  Once a month would even be better than what's been going on! 

So, what's going on?  Here's the thing...things must have been going pretty ok for me to have let 4 months fly by without writing.  When I am really stressed, that's when I need to write.  It clears my head.  Well, stressed is an understatement.  Even as I sit here my heart is palpitating.  I don't recognize myself.  I have lost all coping mechanisms. Maybe I never had any and I was just never this challenged?  Either way.  Dominick has become a monster child.  I love him more than words, but I do not love his recent behavior.  It's gotten so bad that I am having anxiety attacks several times a day.  He whines and cries all day.  He tries to control every single thing and situation, he REFUSES to nap, even tho he is exhausted, and now he has started throwing fits at bed time too. Ok, so we have had nap issues for a few months.  But, he always at least had quiet time in his room.  Never has it effected bedtime tho.  Until this week.  And when I say tantrums, I mean "should I call the doctor" kind of tantrums.  Stomach curdling, blood boiling, total insane patient screaming. Just flat out refusing to go to his room. I have never experienced such a thing in my life.  I have been bothering the hell out of my friends, between complaining, venting and begging for help, it's just out of control.  I don't know what happened, maybe it has something to do with his schedule going out of whack in NY (Although, does that also explain the controlling behavior?) I really think that the bedtime issue is also about him wanting to control every situation.  It's a lose lose scenario.  By 4-5pm this kid is so beyond tired that he is a walking zombie crazy person.  This is even before dinner.  By bedtime it's just mayhem.  No matter how I try to distract, coerce, bribe or trick him into going to bed, the moment we hit the stairs he starts.  Screaming, kicking, crying.  He cries so bad that he loses his voice, can't breathe and can barely open his eyes.  It's mind blowing.  It's driving me I N S A N E.  Man, just describing it doesn't do it justice.  I'm tempted to attach the video I took.  Yes, I took a video - to show him in 15 years!

Well, I started this blog this afternoon.  Of course I didn't have time to finish it, how dare even attempt to sit down for 5 minutes.  Anyway, after saying all that and getting myself all worked up in knots for two days, guess who went to bed without a hitch tonight? Peaceful as can be even.  I have to thank Dada for that tho.  It seems like we balance eachother out JUST right.  When I'm a knotted up ball of stress, he's as cool as a cucumber and vice versa.  (for the most part, the most important parts, anyway)  It's a good feeling knowing that I can lose my cool and somebody will bring me back to reality with just the right amount of patience and good humor.  Thank you, Love.

So, that's what's new on the Dominick front.  Here's what's doing with Baby Eddie:

He's AWESOME!! haha, seriously tho.  Just this week alone he has hit TWO milestones.  TWO.  He's sitting up unsupported *with just a pillow to catch him if he falls* Just today he's starting to really get his hands out to catch himself, which is huge. We've been working on this in therapy for a long time.  AND he's been crawling.  Well, ok, backwards, but it's so exciting to see him trying to reach for something.  Stinks that he's going the wrong way and gets frustrated because of it, still exciting and adorable tho! 

Also, coming in just 2+ months we have the Walk for Down Syndrome! So excited about this.  I am going to dedicate another post just to this and to our amazing friends, the Romero's.  We have been absolutely blessed to have found them and can't imagine taking this journey, or "walk" withouth them.  More to come on that.....

Wait, what the heck am I doing sitting here?!!? The house is silent as can be, I must go enjoy it.  Who knows how long it will last?!?!

Stickers Are Magic! And Dominick is OCD

Man, I really hate when I wait so long in between my blog posts.  I never know where to start.  So much happens around here daily that I just couldn't go thru them all.  Nor could I remember all of it if my life depended on it.  Seriously losing gobs of brain cells by the hour.  Sometimes, it's so bad, I can't even form a sentence when speaking to another adult.  My mind just goes blank.  It's an awful feeling!  I have aged years over the last 3 months.  I'm gaining weight and losing my mind, simultaneously.  But, of course, it's all worth it in the end.  So, enough about my dwindling brain cells and growing pants size.  On to some serious cuteness, starting with Baby Eddie. 

Baby Eddie is growing by leaps and bounds!  He is in the chubby faze.  So love this part of babyhood.  (babyhood?)  I remember Dominick going thru the same growth spurt.  Eddie's cheeks are all filled out, totally plump and juicy and ready to nibble.  Oh, and I nibble, let me tell you.  He is just honestly the most beautiful baby I've ever seen.  I'm not just saying that because he is mine, he really is gorgeous.  See, I know Dominick was .... well, let me just say NOT as beautiful as a baby? ha, he looked like a little monkey! SERIOUSLY. take a look:

See? I told you! Ha, I have no idea WHERE time went or HOW this little monkey turned into the screaming, tantrum throwing, whiney, yet totally handsome toddler that now rules my house, my sleep and my sanity.  It happened when I wasn't looking.  One day he was this little itty bitty, the next he was talking in sentences and using the potty!  What!?  Well, I guess I can now say it's official.  Dominick uses the potty like a big boy.  He hasn't had a pee pee accident in almost a week, his unders or pull ups stay totally dry and he uses the potty on his own when he feels the urge.  It's incredible to me.  I have only one thing to thank for this miracle.  STICKERS.  Holy heck, what is it about stickers that is so magical??? The first few days he would pee every 5 minutes, just to get that magical little sticker.  Or, maybe it was to watch Mommy make a total fool of herself as she danced around the kitchen like a maniac?  Perhaps a little of both.  These little pieces of gooey gold have also helped with getting in the car.  The process of loading the boys into the car became war time around here.  That is until I introduced the Yo Gabba Gabba "Be A Good Boy & Get In Your Damned Car Seat" chart.  All of a sudden, all I have to say is "you want a sticker? Then be a good boy and sit in your seat please" and it was like he would wake up from his tantrum coma and be that perfect little boy that got lost in there somewhere.  So, yeah, STICKERS ARE MAGIC!   And, yes, Dominick is OCD.  Well, not seriously.  I don't think, although, maybe? ha.  He has taken to a whole new form of...I don't know what, independence maybe?  Every single little task that needs to be done in this house has to first be attempted by Dominick.  If I try to, how dare I, close the refrigerator door, he will be throwing a tantrum behind me "DOMINICK DO IT!"  It was cute at first, now it's just out of control.  It's literally everything and totally exhausting.  Aside from that, his new thing is .... I can't even explain it.  If we are walking to the bathroom or from the bathroom, or anywhere he will have to go back to the furthest wall and "start" there.  Even if that's not where we started from.  It's kinda nutty, and again...exhausting!  I now am a step ahead of him and just automatically go back to the furthest wall before taking his hand to do anything.  This probably is just feeding into the nutso behavior, but it saves me a lot of tantrum throwing time. 

Look what happened, I was supposed to be talking about Eddie, and I totally went off babbling.  Eddie is doing great, I am so grateful for his health, oh and for his AWESOME sleep habits. Yay for sleeping thru the night since he was 2 months old!  Well, I've used up all my Mommy time, nap time is over for big boy, and just about to start for the itty bitty.

Thanks for stopping by!!
<3

The "r" Word

So much goes on in a day in my life, that to blog about it all would bore you to tears. Right now I just want to focus on something I can't seem to shake. The "r" word. Retard. Retarded. I've used this word so many times and never once thought a thing of it. Now, everything is different and I am having an internal conflict. I have slipped and used it even just today. As soon as it comes out of my mouth my heart sinks. The word has a whole new meaning now and part of me doesn't even want to accept it. I can't even decide if I'm actually offended by the word, or not. I've never said or meant it in an offensive way to someone with an actual disability and I've been wracking my brain trying to think of a similar word or phrase to compare it to. Maybe that's because I've never known anyone it actually applied to, in the literal sense. It's just something I say, without thought and without cruel intentions. I know that a lot of people, parents, in my shoes are so offended by it that they are outraged. Maybe they've just been at it longer than me? Maybe I just can't bring myself to admit that this could be true of my precious angel. Yeah, that's definitely it, or at least a huge part of it. More than huge. Denial. Denial. Denial. Does anyone mind if I live here, just a little longer? Thoughts? Opinions? Advice? Just a quick snippet of what goes on in my mind. I have the hubby home on a rare Wednesday night, so I'm gonna go back to hubby time.

2 Months and More Pictures!



Eddie @ 2 Months with Brobee for comparison

Let's reiterate: Baby Eddie is 2 months old!  I hardly believe it!  It feels like a lifetime and a nano-second all wrapped into one.  Now that he is smiling my heart is completely full of joy.  We had Eddie's 2 month well baby checkup yesterday.  He is doing great! Gaining weight and growing wonderfully!  Here are his "stats": 10lb 7oz & 22 3/4in.  I am trying hard not to compare him to his big brother, who at that age was 12+lbs and 24 in, but he's the only other baby I knew so intimately! Hey, I know, every baby is unique and they all grow at their own pace, still can't help but whip out Dominick's chart to compare.  One thing that I know is the same with my two boys: they are STRONG!  Eddie's Dr was very happy with his muscle tone.  He was showing tons of resistence, holding his head up, positioning his arms to lift his head from the belly and pushing back with his little leg muscles.  The Dr. made me feel very optimistic, saying that his tone is great and that he is going to be a strong boy.  He was talking about him someday playing sports, as if he had a choice there, Daddy has it all planned out already!  He said it is now our job to keep him strong and active (when he is mobile anyway) - to which Daddy replied "that's big brother's job" I look into the future with my boys now and see so many possibilities.  Nothing will ever hold either of my little guys back. 

Speaking of big brothers, I am thinking I may need to figure out how to make separate tabs, one for each of my boys because since Eddie was born I feel like Dominick is getting lost in the shuffle.  Well, not around here, but in my blog posts.  Around here he is VERY much the (shared) center of our universe.  He is talking up a storm, talking so much that he'd rather lay in his crib and talk to himself than nap.  I think he is just too smart for his own good.  My hunch is that he doesn't know how to turn his brain off long enough to rest it.  Looks like it'll be permanent early bedtime around here for him.  Hey, I am NOT complaining.  By 7pm I am ex*haust*ed and gladly welcome some peace and quiet *and a minute to pee would be nice too*... of course, flash forward to about an hour later and there I am on the couch, ipad in hand watching the videos I took that day because I miss the little booger.  Pathetic.

Nighttime around here is a little too easy actually, with the exception of juggling a newborn while trying to bath a 2 year old - that I still have yet to master - but actual bedtime routines are going well.  Baby Eddie is on a nightly Tubby*Massage*Swaddle routine, throw in a few bounces and pats on the butt, he's down for the count!  I've even transitioned him to his own crib.  WHAT?  I didn't do this with Dominick until he was 5 months old, but, hey if it works, work it!  He will stay asleep for a good 4-7 hours before he is looking for a midnight snack.  This gives Mommy time to - ugh - CLEAN THE KITCHEN!? Even with the much welcome time to myself at night, I still cannot relax with a dirty kitchen, not to mention living/playroom.  It seems by the time I sit down it's more like dropping like a load of bricks.  And I wouldn't change it for anything. 

Ok, that's my update for today!  But because I just love to take photos, I will leave you with a photo montage of a week in my life.  Enjoy :)

Happy Birthday Mama!

Sweet Dreams. Precious Angel

Pants. Off.  Dance.  Off.

Marker Time!

Sneaking A Seat In Big Brother's Chair!

Let's Go Giants! Letting A Very Overtired Boy Stay Up Late To Pound On Tables And Yell GIANTS At The Top Of His Lungs.  So Worth It!

Must Capture Every Sweet Moment Possible, They Go By Way Too Fast!

Sweetest Face