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.

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!!!

Wednesday, February 23, 2011

Bath time in the hospital

Whew! What a crazy past few weeks. After six days in the hospital, Luke was FINALLY released to go home on 2/15. The goal was for him to stay off oxygen for 24 hours, and we finally made it at 10 p.m. that evening (well, minus a little 30 minute cheat that they gave us). Our kid is smarter than we give him credit for. We think he could really breathe fine the entire time; however, he just wanted to act "sick" so Grandma G. would come visit. Staying in the hospital wasn't so bad when he had her to cuddle with, but it was even better when everyone was home. Luke's new favorite activity is taking walks in his red wagon. After Grandma left, he's constantly been asking us to go on more walks...spoiled kid....

Here are some of our favorite pictures from our adventures in taking a bath at the hospital.




Thursday, February 10, 2011

Adventures in eating and RSV.

Well the last few days have been crazy!  We decided to take Luke to the doctor on Monday because his cough was getting bad.  They said he had some congestion and an ear infection.  They gave him a shot of antibiotics and told him to come back the next two days to get the same shot again.  All good.  Well that night, Melissa gave Luke some peaches in his cool net-food thingie.  That term "cool net-food thingie" is a trademarked name, so no, we did not make it up.

NOM NOM NOM NOM!


Give me more peaches and no one gets hurt!

Well, the second day went well enough.  Luke got his second shot and everything was good.  The third day, the PA took his oxygen levels before his shot and realized they were low.  Well, this wasn't good.  They then told me that if it didn't get higher, they would have to take him to the hospital.  This was a shock since he was playing and happy the whole time.  Well, since I (Patrick) had taken Luke to his appointment, I was going to have to tell Melissa the same thing. Over the phone.  And they were going to take him in an ambulance.  REALLY?  The funny thing was that this wasn't a big deal.  They just needed to put him on oxygen and transport him on oxygen.  So when I called her, I was very careful how I put it.  I even told her that she didn't have to come down to the clinic if she didn't want to.  I knew that wasn't going to happen, but all the same.

So we get there and they put him on oxygen....and that's it.  Thats all he needs.  Well, that and some breathing treatments so that his oxygen level gets higher.  Once they can take him off the oxygen they will need to keep him here for 24 hours.

He seems to be doing well.  His cough is almost gone and is happy.  Luke even got to webcam with his Grandma G tonight!  We hope to be out of here soon.  Maybe even this weekend!  Keep your fingers crossed.
Luke is playing doctor on his dogger in his hospital crib.

Sunday, February 6, 2011

Dogs Are Parents Too!

Funny story.  So, lately, Luke has been going to sleep and then crying a bit while he is asleep.  It varies if we go in and pick him up.  Usually it depends how tired we are after a long day of work.  Well, last week this happened and after listening to it for a few minutes, we discussed if one of us was going into his room and who it might be.  After a few minutes of discussion, two people in the room had had enough of this and decided to take action.  Those two people turned out to be Ralphie and Sophie!  They hopped off the couch (something we find difficulty doing) and trotted into Luke's room.  We watched with amazement to see what would happen.  A few minutes later Luke stopped crying and the dogs trotted back out and onto the couch again like nothing had happened.  No one knows for sure what they did back there, but Luke was once again asleep and everyone in the living room was happy again.  In the long run, I think our dogs just might be better parents than we are!  Strangely, I'm ok with that!  I mean, Sophie has had kids so she is qualified right?!?!


What are YOU lookin' at?  Don't make me come out of this Bumbo!  You won't like me when I get angry!

Nothing makes me happier than a little food!  Thanks momma!


Tuesday, February 1, 2011

Luke using a straw for the first time!

Big Boy Haircut

Despite my original argument that his crazy baby hair was cute, even I had to give in and admit that Luke needed a haircut. Our first thought was "How do you cute baby boy hair?", but never fear, that is what the Internet is for! I jumped online, watched a video, Patrick secured Luke in the bumbo on the counter, and away we went. Luke still has both ears, both eyes, and Patrick and I have all of our fingers, so we are marking this endeavor as a success!