Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, March 27, 2011

Pirate's Life for Me!

Yar!  This weekend we got on our boat for the first time of the season!  We just had to.  We have been working on yard work, homework, and Melissa's work work all week and needed to get out.  It actually hit 90 degrees on Saturday afternoon, so we gathered out stuff and hit the road to the lake.  It was a great choice as we met up with some friends who also have a boat.

Luke got tuckered out!


Shhhhhhhh!
In funnier news, we happened to have Luke in his exersaucer next to an inflatable penguin that makes noise when you hit it.  Well, it happened to be close to Luke and he decided to hit it...and when the thing tipped over it said "WOOOOHOOO!" and then came back up.  Luke LOVED IT!  He kept hitting it and hitting it for almost an hour!  Melissa hates it, but I think it's great.  

Not much else is going on here.  We are getting the gazebo done.  Should have it done by the end of the week!  That with our new landscaping, our backyard is going to look like a different yard!  The next project is going to be a shed so we can clean out our garage...which is covered with brown spray paint powder.  I can't wait to get started!


Thursday, March 24, 2011

March Madness

It is time for March Madness, and I don't just mean basketball! Things are rarely quiet at the Godinez household, and this week has been no exception.  Luke has been counting down the days until his first birthday, but in medical terms, a lot has to happen before then! Since Luke LOVES to stand up and watch the doggies play, it is time for him to get his leg braces. No, these will not be a permanent medical accessory; however, they will simply be to provide support until the muscles in his ankles can strengthen.  Due to his low muscle tone, his ankles like to roll when he stands, and nothing about it looks comfortable.

Everyone knows the continuous saga of ear infections and pink eye, so there's a doc for that! We went to the ENT yesterday for our initial consult for tubes. The doctor is optimistic that we might be able to get tubes in, but Luke has some tiny little ear canals. In fact, when the doctor looked in his ear, his immediate response was, "Well, this explains why you've had so many ear infections!" While Luke is in surgery, the doctor is also going to conduct a neurological hearing test. An 11 month old can't exactly raise his right hand when he hears a beep during a hearing test, so this seemed like the best option to ensure that we won't add hearing aids to our medical accessory list. 

On a more exciting note, here are some of our latest pictures of Luke enjoying the beautiful spring weather!

His legs finally touch the ground!!
Hanging out with daddy after school.

Doggie in hand...ready for school!

Zoom zoom!

Now we know he isn't allergic to grass...thank goodness! It does taste yummy though...

Thursday, March 17, 2011

Sunday, March 13, 2011

Relaxing Weekend


After an exciting last weekend of Vegas, ear infections, and daddy meltdowns, this weekend was much calmer.  All three of us managed to be sick throughout the week (I think it was just allergies as everything is coming back to life since the weather is so warm), but we were all better by the weekend. Luke started off his Saturday by staying in bed until 9:00!!! This was great because Patrick and I had LOTS to get done. We just bought a gazebo from some friends moving away, so while Patrick painted it out in the garage, I diligently worked on homework so I could play the rest of the weekend.

When Luke finally got up, he was super hungry. Notice the two bottom teeth in the top picture! We decided his hair was getting a bit shaggy again, so we called on Stylist Lindsay, our neighbor, to come assist with haircut #2.  We had the brilliant idea to do it outside so we wouldn't get hair everywhere, so yes, our child is sitting in his bumbo in the bed of the pickup truck! Our goal was a natural, windblown look, and it totally worked! (Basically, we just couldn't figure out how to cut his crazy hair!).
Obviously from this picture, Luke wishes you would have been there to save him.  Despite his trepidation at our approach, his hair turned out beautiful!  Thank goodness we had him looking all snazzy because we finished just in time to make it to his friend Grace's 1st birthday party followed up by a bbq in the hood.

Wednesday, March 9, 2011

Tuesday, March 8, 2011

Lessons Learned

Sigh.  Do you hear that sound?  That was me beating my head against the wall.  Melissa was gone this weekend and I was a single dad for a few days.  Instead of playing XBox all weekend, I thought I would try and get some work done and run some errands.  Oh, sure, I would play video games at some point, but I was going to make a concerted effort to contribute to society.   Here are the results: a sick baby, a few primed parts of an aluminium gazebo, a perfectly smoked pork roast, and a very bewildered daddy.

Thursday: Melissa left work and went to Vegas.  I picked up Luke and took him home.  I fed, changed, and loved him.  All was good.

Friday: I took Luke to school at 7am so that I could get to work to head up a big capstone event for the graduating class which started at 7.  I left work a bit early to pick him up and bring him into work while the class worked and I played with Luke when I wasn't teaching.  Took him home a bit late.  Gave him a bottle which he devoured and then passed out pretty early.

Friday Night about 2:30am: Luke wakes up screaming.  He never wakes up and I'm thinking he is just teething so I give him a small bottle and a shot of ibuprofen.  20 minutes later he is out cold.

Saturday: It's a rainy day and Luke wakes me up like it was a normal work day.  Awesome.  We play and such, but I am determined to get some work done.  I take out a pork roast to thaw out for the next day.  I then take the pieces of our new-to-us metal gazebo which needs to be painted and clean them between rain showers.  No big deal, I put them into the garage to dry so I can prime and paint them on Sunday.  I think I can do almost all of them on Sunday in the hopes that we can install it sooner rather than later.  Later that day I leave the house (with Luke for those of your who thought I was going to forget him!) to go look at some pants at a store and then a local greenhouse for a Mardi Gras wreath for Melissa.  I first go to the Academy Sports close to us to look at bikes and Luke is kind of crying the whole time with snot running down his face. Awesome.  So we leave and I head to the store to look at pants but realize I can go to Church since I am close and it's only 15 minutes till mass starts.  Awesome!  We go and Luke is awfully clingy.  He typically isn't with me since he is a total Momma's boy. I then realize that he is burning up.  100% sure he is running a fever. He seems ok, so I don't rush home.  When I do get him home I take his temperature and get a reading of 102.5F.  Crap.  So I read up and realize that all we can do right now is give him some more ibuprofen.  I do and his temp comes right down to a low grade fever so no biggie.  He is sociable again and whatnot so I don't think about it until:

Saturday Night at 12:30am: Luke wakes up screaming again and I give him more ibuprofen, he calms down and sleeps.

Sunday: We wake up on Sunday and I realize that Luke is pulling on his ear and is running a fever.  Fine.  I get it, I had terrible ear infections and now, thanks to my defective DNA, he has my condition.  So I take him to the Urgent Care office down the street and they give him some antibiotics.  He calms down and everything is ok.  So I diligently go about priming the gazebo.  It sucks and is slow going.  I also start up the smoker and put it in the driveway so I can watch it.  It dawns on me that I have turned into a native as I have a painters tarp down on my driveway with all sorts of metal parts getting primed, a baby in a pack'n'play in the garage, and a smoker with a pork roast going next to the front door.  The problem was that Luke wasn't happy, the wind was making the priming terrible, and I had to keep tending the smoker.  When Melissa came home I was ready to be relieved!  I cleaned up and helped her get her bag out of the car.  I was very glad to have her back.  Then during dinner, she starts complaining that she finds the fatty sections of the pork roast disgusting and they make her want to throw up.  Not what I wanted to hear after the weekend that I had had!

You want to know the worst part?  I didn't get to the stores nor did I get to play any XBox!

I need a vacation!

Tuesday, March 1, 2011

Mardi Gras Madness and Visitors from Afar

Just in time for Mardi Gras madness, my (Melissa's) Uncle Larry and Aunt Mary from Kansas and Uncle Ron from Colorado came down to visit. It was the first time for Luke to meet his Great-uncle Ron, so he was super duper excited to finally meet him. And, it is always great to see Great Uncle Larry and Great aunt Mary. Needless to say, Luke was spoiled rotten all weekend.  We showed them the finest that Bossier has to offer by taking them to the Krewe of Centaur Mardi Gras parade, which was a great time. Even Larry and Ron jumped up to grab beads. I found this silly hat from one of the vendors to send to Mike for his trip to Ireland this summer (it says "Got Beer?").  Luke appears to be judging me for wearing the silly hat.



Check out all those beads! He didn't even have to flash anyone for them!
 Chilling out with Larry (who is wearing the hat that Ron got for Luke at Firehouse Subs)
 Part of the Malone clan with its newest addition.

AND..........

LUKE HAS TWO TEETH!!!!!!!!!!!!!!!!!!!!! The first one crept in while we were in the hospital last week, but this second one just jumped in there the other day! Babies with DS typically don't get them until well over 1 year old, so way to be an over-achiever, Luke!!!