Fragile X-Traordinary

Sunday, November 15, 2009

Last night was a fantastic night. We went to a Mexican restaurant to celebrate two family birthdays. Pup, Hank the Tank, and Baby Worf all sat near each other in their highchairs. Pup was soooo well behaved. He ate everything put in front of him, played, laughed, walked around the table....More importantly, I didn't feel last night that he was any different. The Tank had food all over the floor....Baby Worf had to be taken out of the restaurant because he had hit his breaking point during the meal. . . Not Pup, though. He was so great- no tantrums, no crying....nothing but smiles and eating. I felt, just for a while, that he was just a normal kid, and the dinner last night made me realize that in many ways he is a very normal kid.

After dinner we had to go to Danny's favorite hot spot- Target. He loves all the Christmas stuff so we had to spend money we don't really have to further decorate our home. It is Danny's goal to fill our home every holiday season with any piece of Christmas decor he can find. Although I love his spirit, he doesn't see the price tags on anything. We usually end in some argument, but since I was so happy about Pup I let it go. And in the store, Pup was even better! He played with toys appropriately in the cart, flipped through pages of a book (never before seen!), and at one point we could tell he wanted to get out so we let him walk around and he proceeded to help me push the cart. Again, I just felt like he was like everyone else.

To top that, for 3 nights in a row he has slept all the way through the night without waking up once!!!! I hope that is a trend that continues. And for two of those nights, I put him in his crib awake, and he fell asleep without crying for me. Yeah Pup!

Last Sundy, we went to "Toys for Big Boys" at the Town Center. This 3 day event was part of the California Lifestyles Expo where tractors, RVs, Limos, Race Cars, Funny Cars, tires, and home improvement projects were displayed for all to see. We specifically went to this event to support my step-dad Randy who was representing his company that makes torque converters. On display was a race car he helped to build. I wish I knew more about cars so I could appreciate this more. AJ got to sit in the actual car which, I imagine, is not an experience many people get to have.

Monday, November 2, 2009

News!

I'm so thrilled. Pup starts and early intervention group class on Thurs. Since I'm working Danny will be going with him. It's 2 hours once a week. I LOVE my service coordinator. With all the budget problems here in CA I'm VERY concerned as our insurance is now going to be accessed. I'm not sure what that mean, however. All I know is that I'll be paying out of pocket for things I didn't have to before. Pups IFSP meeting is on Wed. I'm really concerned about his fine motor development at this point. Still working on waving, clapping....yada yada yada

Sunday, November 1, 2009

The Drs. Mc Dreamy and Mc Steamy are in.

Last night was Halloween and in traditional fashion we took the kids trick-or-treating. AJ and Pup were Drs. Mc Dreamy and Mc Steamy. It was fun this year because Uncle Bret and Auntie Kiki (my sister Karyn) came with us unlike last year. Before venturing off to the houses, we stopped by my mom's to show her the kids' costumes. Hank the Tank was also there with my sister and brother-in-law in his pirate costume donned with mustache and pirate goatee.

Then it was off to Pop Pops where we were joined by Grandma Bebon and Aunt Kelly for trick or treating. They painted their faces and The Tank was not too happy. Of course Pup was oblivious and wasn't scared a bit.

Saturday, October 31, 2009

Funeral

We had to drive down to San Diego for the funeral of Danny's step-father of about 20 years (well, former step dad). It was a small, very beautiful service in a Jewish cemetary. Myron was Jewish and as we're not the boys were given yamakas to wear. It was a graveside service so everything you'd expect to happen did. We saw the coffin being lowered and we participated in shoveling dirt into the grave. It was solemn but happy at the same time. We let it all happen and felt that if AJ had any questions we'd just answer them. After all, death is a part of life. We didn't really say much figuring he'd ask and we'd tell him. On the way home we asked him if he had any questions about anything he saw. We figured he'd ask about the "box" or the shoveling. He said no but understood that Zaide went to live with great-grandma in Heaven. Earlier this year he went to the funeral of Danny's grandmother. About 10 minutes later he announced, "I do have a question." I braced myself for something big.

"Why did I have to wear that little hat?"

Monday, October 26, 2009

Fall Family Picnic

AJ's preschool had their annual Fall Family Picnic tonight. Grandma Yvonne, Aunt Kelly, and Granny Mimi were all in attendance. It's nice to be able to see AJ's friends and see him "in his element." We just got Subway sandwiches and played on the playground. They also had activities set up on the patio like pumpkin painting, pumpkin hammering, and other things.

Aunt Kelly and AJ in the sandbox on the school playground.

Pup and AJ in the playhouse.

It's very therapeutic to hammer golf tees into pumpkins. You wouldn't think so, but it was!

Granny Mimi and AJ

Pup did some walking while we were there too! He just needs to learn to get up by himself.

Sunday, October 25, 2009

Let's Go Yankees!

Here are the boys celebrating the big win! The Yankees are off the World Series- their first since 2003! Go Jorge #20!

Today was also Pop Pop's 60th b-day celebration. Al, as always, enjoyed helping to blow out the candles on the cake and being the boss of all play. It was so nice to see all the kids finally playing together as they are old enough. It is now noticeable, though, that Pup is not quite there with the other kids- even Danny (who NEVER ever says anything) said something today about it. It's a bit painful to hear my sister and friend Tracy talk about the boys (who are all born 3 months apart- Worf [20 months], then Pup [17 months], then Bubs [14 months]) growing up driving, playing ball together, because I know there's a big possibility Pup won't be able to. I don't want to, however, spend his life wishing he were like the other kids. I just want to accept him for who he is, but it's hard. AJ is like the other kids so I guess I have the best of both worlds, right?

Here's Pop Pop opening some gifts.

I am watching him right now and he's FINALLY able to push the ball popper toy on. He gets that if he pushes on the lever the music will start. It's the first toy he's "gotten." Yeah Pup!

Welcome to Holland

c1987 by Emily Perl Kingsley. 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.