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.

Wednesday, January 29, 2014

So, do you like Texas??

Each day it seems like someone is always asking, "So, do you like Texas?" We attempt to keep a straight face and reply, "Nope...absolutely not!" Now, don't get me wrong - we miss our friends and co-workers, but life is radically different here.....in the best possible way.

All of you know that in our lives, the kids' therapists are pretty much extended family. Luke had his OT, Anita, since he was 12-weeks-old, and I wasn't going to let Claire have anyone else! Patricia joined the team as Claire's PT after we came back from Hawaii, and we loved her just as much. When we announced the move, the big joke was, "How many therapists will Melissa fire before she fills their shoes." Well, no firing needed.


Whereas in Louisiana Claire could receive 4 hours of OT/month through the Early Intervention Program, here she gets FIVE...yes.... 5 hours PER WEEK.....AT OUR HOUSE!!!!! The entire team of OT, PT, Speech, and Developmental Specialist work together toward common goals. In addition, her developmental specialist is our case manager, and she processes all of our insurance paperwork/referrals! Since I work from home (best invention ever), I just slip out of my office for as many of her appointments as I can. 

Ignore this sudden surge in free time and listen to what's new for Claire:

- Picking up food in an attempt to feed herself
- Assisting in standing up from seated position
- Vocalizations
- Bearing more weight on arms and legs
- SHE GAINED 2 POUNDS SINCE WE MOVED!!!!!!!





Who are the lady and little girl in the picture?!? Nope we didn't find a new family in San Antonio - just an amazing nanny and her cute little girl. We decided to take the kiddos out of daycare because the one here just didn't compare to Goldman. You'd be shocked at how difficult it is to find a daycare in a city this large that will accept and work extra hard with special needs kiddos! So, with Luke at the new school, Claire's therapists coming to the house, and me working from home - it only made sense to hire a babysitter here at the house. So, when the kiddos aren't at school or in therapy they go to the park, the bouncy castle, and other fun things that little kiddos do. Plus, Luke and Katherine have become best friends!

So, what do we do with our spare time? Well, we hang out and go out to eat...
And decorate the new house....(Luke and Claire's playroom...not Patrick's!)
 And go to Sea World...Luke's personal favorite....

Most importantly, we just get to hang out and not drive to so many out-of-state appointments!













Wednesday, January 8, 2014

Crossing State Lines

Remember that feeling when you moved off to college,
had no idea where you were or what you were doing,
and loved every minute?

That's the story of our lives
As we journeyed across state lines
From Shreveport to Texas to start a new chapter.

Notice that we've been absent from the blog
Since I turned the big 3-0
Though our excuse is legit.

Rewind back to September
When the news came
That to San Antonio we were headed

One week later we were there in person
Buying a house
and starting things right!


Then the shutdown happened
And put the move in limbo.
Football season started....
And October came and went.
Before we knew it
Halloween was here and over.....
We tried to kill time
by hanging out at our favorite places.
Starbucks was our favorite where they knew our faces....
We stayed living out of boxes
And couldn't find a thing
for longer than we anticipated....

Our only sense of routine were our appointments.
Claire continued to get stronger,
And brother never missed a workout.

We finally got word that our time had come.
We packed up the boxes, and said goodbye to our friends;
We loaded the cars and moved ourselves (yes, insanity acknowledged).


Our family came to help unpack boxes.
We set up the tree,
And settled in for the new adventure!