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.Saturday, July 31, 2010
Dreaming about Airplanes
Wednesday, July 28, 2010
Parent Outreach
We have exciting news! Pam, the director of the Goldman School (Luke's Daycare), contacted me a few weeks ago about possibly doing Parent Outreach as new parents receive the news that their son or daughter has a disability. I gladly volunteered because my defining emotional moment in the hospital was after I was visited by a mom whose daughter who has DS (I think I've mentioned her visit before on the blog). After I heard her talk about her daughter's friends, schooling, and extracurricular activities, I realized that Luke would be just a normal kid who maybe will need a bit of extra help along the way....... Well...... today, the Parent Outreach coordinator, Monica, called me with my first family! A new mom received the Down Syndrome diagnosis after the results of her Quad Screening which is done about 1/2 way through pregnancy (My results had come back negative, which is why we didn't know Luke had DS until after birth), and she has all of the same questions that I originally had so she has asked to speak with me. Hopefully, she'll see what a happy little baby Luke is, get her questions answered, and realize that things really will be okay.
Monday, July 26, 2010
A Baby's Laugh
Tuesday, July 20, 2010
Tuesdays with Ms. Anita
First, Luke and Ms. Anita spend a little time talking since they only get to see each other once a week. He had a busy week practicing holding up his neck and playing with toys, so there was a lot to tell. Ms. Anita LOVES to hear all about it. She pays special attention to how he responds to her voice and follows movements. You can tell by the look on his face that he loves to talk about his day!
Ms. Anita only visits for a few minutes though because then it is time to get to work. Luke lays on his little pillow which helps support his back while he spends some time watching his toys. This particular one plays cute (annoying) little songs which keeps his attention for a few minutes. The goal is to strengthen the muscles right on the back of his neck so sitting up doesn't take quite as much effort.
Next, Luke decided it was time to ditch the pillow and fly solo because pillows are for sissies. You can see Ms. Anita holding down his bottom. Since he has lower tone overall, it's a bit more difficult for him to keep his giant cranium balanced. The added pressure on his bottom keeps his back from straining as much. Ms. Anita couldn't believe how much better he was at this! Last week he just wanted to lay his head down and rest, but there was no more messing around today.
Well, Luke finally had enough tummy time, and after a few minutes of tears, we got our smiling baby back. You can see that he's balanced on Ms. Anita's legs which are propped up at a 45 degree angle. Just think - it is much easier to sit up from a reclining position than it is from being flat on the floor. By placing just a little support with her hands behind his shoulder blades, Luke could fight gravity, flex his baby abs, and lift up his head. After two reps of baby sit ups, Luke decided he didn't care about building his six pack abs.
Did I mention that therapy makes the Little Dude sleepy? This may seem like just a picture of sleeping baby, but Ms. Anita thinks it is great that he's sucking on his hands and grabbing his shirt. He is developing awareness of what all his hands can do. It's pretty funny to watch while he learns to hold toys because he constantly bonks himself in the face.
Luke isn't the only one who is doing a stellar job. Today, Patrick found out that he was named 2OG Instructor Electronic Warfare Officer of the Quarter. Basically, this means that he is a superstar! He's been working crazy late hours for Weapons School, so this was a nice affirmation that all the hard work is paying off. Sophie realized that Patrick and Luke were both worn out from working so hard, so she generously volunteered to help them catch up on their sleep.
And then there is the red-headed step-child. Ralphie may not have made any stellar contributions to the family today, but he has kept down the cushions on the couch very well. He's not hiding his head in shame.....he simply can't find his way out.
Sunday, July 18, 2010
Chillaxin' Weekend
I'm sad to report that the camera is still having technical difficulties. The technician is still at work on the case. LOTS of pics to come when it is repaired. Until then...
Thursday, July 15, 2010
What day is it??
Even those of you who just saw him at his baptism would be blown away by how much Luke has changed recently! From holding up his head to smiling to the funny new sounds that he discovers each day, he is getting much more animated as his personality is beginning to emerge. I would take more pictures, but the poor camera is experiencing some technical difficulties. Maybe we wore it out taking 10,000,000 pictures.....Never fear: my handy technical assistant (a.k.a. Patrick) will be back to save the day tomorrow!