Sunday, August 11, 2013

Peanut butter, hair cuts, and a cure for Down syndrome.

He smells of peanut butter & speaks a language that only he understands.  We call it dolphin.  He's very social...when he's in just the right mood, with the right amount of people around, the volume of his surroundings has to be to his pleasing, and the chaos...well that has to be to his liking as well.  Otherwise, he's out.  He is 5 and loves nothing more than to be naked.  I made a chore chart that only says "pee pee in the potty", 7 times a day, 7 days a week.  I'm willing to pay .25 for each chore.  Shoot...who am I kidding, I would pay much more but shh...that's our secret.  He has perfect flip flop feet, but refuses to wear flip flops.  Did I mention he smells of peanut butter?

I'm feeling very random & conflicted this afternoon.  My day started off pretty normal.  The boy woke me up at about 5:30 am (his norm), so I flipped on Toy Story & put the pillow over my head.  He crawled around on top of me hooting & hollering as Woody went about his shenanigans. I'm over it, let’s get up.  We had our usual breakfast of eggs laced with Prevacid, bananas, and a Nutrigrain bar.  I am well aware he's done based on the flinging of left over banana that just hit me in the head.  Speaking of heads...let's shave his!!  Dad is home (back up is required)...let's get this done.  My boy does not enjoy the cutting of the hair.  But when the screaming is done, he's so incredibly handsome.  Nothing super exciting happened today...same ol' same ol' stuff.  Until I sat down at the computer to see what's happening in the world (according to MSN).  And I came across this...

I'm not even sure where to start.  Do I believe there is or ever will be a "cure" for Down syndrome?  I don't think so.  Do I hope that someday they (scientist) find a way to help give people with Down syndrome a higher quality of life?  Absolutely.  As I do for the rest of mankind.  This article talks about the possibility of helping/eliminating heart defects, Alzheimer’s disease, childhood Leukemia... but with what risks?  Jake had heart issues as an infant, but had open heart surgery & now is a little superman.  We are good there.  But Alzheimer’s...that scares me.  So to say they may have a "cure" for alzheimer’s in people with Down syndrome...I say bring on the studies.    One of my favorite parts of this article, "If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."


He smells of peanut butter, I can't understand him, and he tends to be fussy around people he doesn't know, we spend a lot of money on diapers (at 5 years old), and he flings food at me...but the absence of all of that, in my world...would be unimaginable. 


Monday, March 25, 2013


This morning I woke up with a overwhelming NEED to hold my boy.  My normal routine is to get up & jump in the shower real quick before I let the little distruct-o-con out of his crib...but this morning the force pulling me to him was too great.  I walked into his room & was instantly greeted with his perfect little smile.  I snatched him up and sat on his bedroom floor.  His norm is to give me quick hug, make a kissy sound and bolt out the door to destruct.  But today he hugged, and hugged & hugged.  And patted my back to match the pats I was giving him.  It hit me.  It was 4 years ago today that we almost lost him.  I squeezed him a little tighter...he squeezed back.  I pulled away from him & said, "thank you for fighting for us...we need you buddy".  As if he knew exactly what I was saying (I choose to believe he did), he gave me a belly rolling laugh as if to say "silly mommy...I wasn't going anywhere", kissed me on the nose, and jumped up to start his day of destruction.

It's funny the things that take me back to what we went thru.  Every time I hear a MedStar helo go overhead I cringe a little knowing someones life just got turned upside.  I CAN'T buy Pampers for Jake or anyone else...because that was what was used at Children's.  Peanut butter M&M's & Hot Tamales were my source of food because I could sneak them into the ICU in my pockets...every time I have them it takes me there...just for a second.  The smell of a certain hand sanitizer makes my stomach turn because of the gallons we used while in Seattle.  And every time I hear a little baby cry a little too hard my heart skips a beat...because that is what took Jake's last breath before he coded.  He cried too hard & his little body couldn't catch up because it had been fighting so hard for so gave up.  Obviously I have 100 times more positive things that remind me of happier things, but I don't think the this day & these memories will ever escape me. 

So today I feel incredibly blessed that I was able to have these memories, hug my boy, and go on with our day...because our story could have been very different. 

Monday, February 18, 2013

Things That Make You Go Hmmm...

To all my fellow peeps of the 90's...your welcome (

Tomorrow I am going to meet with a group of fab ladies to talk about Glitz & Glam, DSAMC, and give them a little glimpse of Jake's "story". I am not a public any way, shape, or form. But I'm going to pretend. Wish me luck. I was trying to figure out how to jump right in & it hit me...I'm going to start by reading Welcome To Holland.

I jumped into my word docs, pulled it up, and printed it out. I started to read...I ALMOST made it thru without crying...almost. Keep in mind, I have read it a million times. I could probably recite it. I still cry. It's beyond perfect. I wipe away the "I'm not alone" tears & move on to what am I going to talk about after I'm done crying tomorrow night in front of 20 ladies.

I've got it all figured out (ya right), got my little cheat sheet printed out...I'm ready to go. I look up & can't help but smile. On my kitchen table sits a little vase with 6 little tulips. I fell in love with tulips 10 years ago while I was planning my wedding. They are simple, pretty, and perfect. Not expensive, or flashy. I just love them. I REALLY wanted a huge bouquet of white tulips for my wedding...but that didn't happen. They are a spring flower & I had an early fall wedding.

I'm sitting on the couch content that tomorrow is going to go great, & a whirlwind of connection hit me. Starting my new life with the love of my life & having an intense need for tulips in my hand/ Welcome To Holland / Jake/ Tulips on my kitchen table making me smile.

I am happy.

I have a beautiful family.

I love and am loved in return.

Life is good.

Stop & smell the tulips my friends!


Monday, February 11, 2013

Conversations with a 7 year old

I know every parents has these days...but for some reason to days conversations with Gracie has me giggling.  It started off with...

Me: Gracie, you need to go thru your dirty jeans pockets

Gracie: Why

Me: Because I think you left your manners in your pockets...go find them please.

I get a cross eyed look from her, but she stomps off to her room & comes back a few minutes later with her dirty cloths & puts them in the laundry room!!  BONUS, I got her to do a little laundry too...wasn't even looking for that outcome!

Gracie:Okay mom...I have my please & thank you's
Me: Oh good
 A little later on at lunch, she hops out of her chair & starts to walk away.
Me: Hey Ms Lu...what are you doing?
Gracie: I'm done, going to go play now.
Me: STOP...check your pockets...come back & sit down & try again
Eyes rolling, feet dragging...plop in her chair.
Gracie: Mom, may I please be done?
Me: No, 3 more bites (I don't even's the go to answer every time)
Me: Thank you Lu, now put your dishes in the sink please.

A little later I hear her headed out the front door...
Me: Hey...what are you doing?
Gracie: Going next door
Me: How about a "hey mom, can I go next door" before you just jet out.
Gracie: Ok, sorry.

10 seconds later she comes busting thru the house right to the bathroom.  She means BUSINESS!!  After a few minutes she peeks her head out the door and says, "Mom, I went poop...can I flush the toilet"?
Me: Gracie, that is a question that you never ever ever ever ever have to just do it.  As a matter of fact...if it's real a courtesy flush!
Gracie: what's that?
Me: We will call daddy in the morning & he can explain...he's the expert in the family!!

Tuesday, January 1, 2013

Setting the bar high for 2013

For lazy, that is.  I'm frequently asked, "Do you ever stop"?..."Where do you find the time"?...and "How do you come up with this stuff"?  Answers: Occasionally, bedtime, and Pinterest.  Today is the exception.  Why today?  I'm not sure.  Maybe because it's a holiday that doesn't involve any kind of "celebrating", maybe it's because I'm on day 4 of a 24 day diet, maybe it's because I'm the only adult in the house & I can be lazy to any extreme that I feel necessary.  Don't get me lazy only goes so far (it's pretty far)...but I'm not looking to make any trips to the ER (that would disturb my lazy...& it's expensive).

So, today I have STOPPED.  I'm being lazy.  I'm blogging from my laptop, on the couch, in sweats, hair in a towel from the shower I took an hour ago.  Your welcome for the visual.  How did I manage to STOP with 2 small children in the house...child slavery.  Yep, I said it.  Quit rolling your eyes.  Anyone who has children does it, or had children did it.  You call it "chores" or "helping out".  I made a game of it.  It's called "Gracie is mommy today".  It's derived from the games "Lets see who can clean their room fastest", "Who can take a nap the longest", and the most common, "Who can be quiet the longest".

1st task...get Jake out of the bath, diapered, & dressed.  Ok, I helped with the bathing (remember the ER avoidance)...but the rest was on her.  She went for the PullUp (normally he sports a diaper, but PullUps are easier to put on) nice call.  Dressing was accomplished, as long as we don't leave the house (which would most definitely land us in the ER being that Gracie probably can't see over the steering wheel in my car).  He's rocking his Toy Story jammie bottoms & Buddy Walk t shirt.  A+ for effort.  He's been dressed in worse!

2nd task...breakfast.  She went with what she knows...peanut butter toast.  Yes, I allowed her to use the toaster.  As any good parent would, I supervised...from the couch.  She rocked it.  She was happy, He was happy, mission accomplished.  I did do med duty (no ER today rule).  Oh and because she is "mommy" today she even made me breakfast.  A tasty protein shake. 

Playtime.  Jake has a movie going & is destroying the playroom as I type.  Gracie & the neighbor girl are coloring.  Like any good mommy, she is having a little "me time".  She has noticed that Jake is in destruct-o mode, but calmly said, "I'll get that later".  That's my girl. 

I just informed her that she may need to start thinking about lunch because Jake will need a nap in about a hour.  "What do you think you are going to make" I asked, trying to determine if I actually have to get off the couch.  BTW, I have a "no CPS rule" too.  Which means the kids have to eat.  "Mom, I don't know how to cook...I can't roast anything".  True that.  Thank God my laziness seeps out at other times because I just happen to have Crustable PB&J sandwiches in the freezer.  Pop them out & they are good to go in about a half hour.  I'm also teaching her time management!  But she's insisting on Spaghetti O's.  Can opener...microwave...potential ER visit...darn.  Guess I better get on that. 

It's only noon, but I'm guessing the rest of the day will go something like this...
-Family nap time (remember our game of who can take the longest nap)
-RedBox return & new rental (yes, I'll drive...geesh)
-Pizza for dinner (that someone else will make & deliver)...& there is a good chance that we will have a "picnic" in the playroom so that we don't even have to get up from our movie marathon. 

Happy Jan1, 2013!!