Margate, NJ -- summer 2008

Maya, Bubbie and Amelia -- HUGS!

Amelia and I just got back from a week at the beach at my folks' beach house. Nestor was in LA working on the show "Medium", so we took the opportunity to spend a week with my Mom and Dad aka Bubbie and Zadie and my sister's family, Aunt Jackie, Uncle El, Ezra (4 yr) and Maya (1 yr). What a time! Constant chaos and Amelia finally knows what it's like NOT to be an only child (I know she has her big bro, Spike -- but he's not competitive with her and certainly doesn't steal her little people car or star stacker, not yet anyway). So funny. Amelia certainly became a little possessive and concerned when little Maya was around to steal her stuff.

Ezra with Amelia, on the pump for dinner and holding hands while they watch the Backyardigans

Let me just say right off, Amelia hates the beach. We went the first day; I put her in her cute little bathing suit, packed the beach tote and sunscreened us all up. We drove the few blocks to the beach and as soon as we hit it...out came the tears. She was rubbing her eyes and distributing the sunscreen all in her eyes -- tearing up terribly, skin all blotchy and sooooooo uncomfortable. We got to the beach blanket -- covered in sand because my neice and nephew had already been there tearing up the joint. We thought maybe it would be better if we took her to the wet sand and edge of the water to see the ocean. This proved to be just as miserable for her. So the tears continued as we took her back up the chairs and blanket. Finally, Amelia passed out on my Mother's lap after all the crying.

Meanwhile, our friends from Therapies 4 Kids, the Petits (see Tator Tot Chronicles), who live 45 minutes from Margate -- were making their way thru Saturday beach traffic to meet us for a day at the beach. Best laid plans and all....it took them a long time to get to us and by that time I had called him to say that Amelia and I would be heading back to the house as soon as she woke up. The good news is that they came by the house later that day and it was so fun to get Amelia and Tatem back together to play, along with Tatem's handsome twin, Jude and older sister, Kat. Ezra and Maya also enjoyed the Petit crew where there was lots of chaos -- and beers for the parents!

Needless to say, Amelia and I didn't go back to the beach over the week -- but there was lots of other stuff to do. We went to the library each day -- which is also three blocks away. Amelia, Bubbie, Zadie and I went to Smithville one afternoon, which was really nice. A charming little village that dates back to the 1800's. One day we met up with some friends of my sis' at Ocean City and went on some rides and had dinner on the boardwalk. Another day we went to Storybook Land which was really a blast! Amelia went on lots of rides and looked at so many things. We went on one ride which were antique cars, Tin Lizzies, and she was steering up a storm --which is her favorite thing these days. One evening we went to AC to Caesar's, where we enjoyed the water show in the mall shops. Amelia seemed to like the between-the-show water acrobatics, which were small little dances with light cheery music -- but when the real show began -- the loud rock music, harsh lights and smoke upset her. Not a fan! So much so, that when we left the mall area and then walked back through, she started crying and shaking her head "no" until we got to the food court and she saw that we weren't going back to see another "water show". We went to "The Walk" on our last day there, which is the outlet shops in AC. Amelia scored big time! Bubbie and Zadie bought her a gorgeous "back to school" wardrobe for the fall...does it matter that she isn't actually going to school? I couldn't believe it -- but I bought her 4T. She's only 27 pounds -- but she's 37 inches long...4T is 38.5 - 41.5 inches -- by the time the cold weather comes...OY! While buying up Oshkosh, there was a woman shopping with her 26 yr old son, who has CP. He was sweet and looked as unhappy as Amelia being pushed through the isles. He laughed when I mentioned this fact. His Mom and I spoke for awhile about therapies and development. She talked about how much her tender, loving son has taught her and everyone else around him. "A lot of hard work" she said "but worth every bit of it." What a strong woman with a wonderful take on things.

Storybook Land

The girls on the Merry-Go-Round -- Amelia actually fell asleep right after this photo was taken and I had to take her off the ride. So cute!

On the flying elephants -- the operator of the ride was a sweet older gentleman who asked us at the end if we wanted to ride again. He asked if Amelia has CP, he told me his 44 yr. old son has CP and "gets around pretty good and loves the computer".

and the ferris wheel -- she wasn't crazy about hanging around while the operator let the other cars out at the end of the ride.

On Saturday, Jackie, El, Zadie and their kids drove back to Baltimore. Amelia, Bubbie and I drove back to NYC. We had an uneventful trip and got back to be greeted by Nestor, who had flown in from LA Friday night. The four of us spent Sunday together. I made a nice dinner with my Mom and Nestor made up a wonderful batch of mojitos from a mix we bought in Smithville -- along with some fresh mint. DELISH!!!!! My Mom and I did a little running around this morning and then she left on the train this afternoon. It was sad to see her go.

On Labor Day we will be going back to Long Island for the month of September. We are really looking forward to this trip out. We'll be in full swing -- HBOT, Therasuit and the Ronald McDonald House. Yippeeee!

I hate the playground

For two years I have been taking Amelia to Bleeker Park, on the corner of Hudson and Bleeker Streets. Two years. And I still only know less than a handful of people. I know Francis and Frank because he is one of Nestor's old buds from his East Village days. I know Tracy and Paul because they used to live downstairs in our building. I know Leona and Max because Nestor and Max are actors. But there are only a couple other Moms I've met in two years. TWO YEARS.

I make a point of taking Amelia there almost everyday -- weather and therapy permitting -- because I know she loves watching all the kids play. If it isn't too crowded I'll get her on a swing or the slide. I'll let her sit or stand on the edge of the sandbox (no hands in the sand because she is still sticking them in her mouth too much for my comfort) and play with the sand in her toes. Recently I've taken up walking her around the playground and jungle gym -- up and down wooden steps and bridges. But so much of the time there's lots of wild kids running around (it is a playground after all) or, believe it or not, clueless Moms on their cellphones barely noticing where they or their toddlers are going. The few times a child has stopped to acknowledge Amelia, it's usually to play with the toys on her stroller or to stare curiously at the little girl leaning forward in her stroller with her head tilted to the side. And moms will acknowledge Amelia and I with that small, polite smile which I have come to loathe.

So many times Amelia and I just park our stroller and sit on a bench and watch the other kids running around. I'll put her on my lap or stand her so she can lean over my legs but mostly, she just watches the others doing what, I'm sure, she wishes she could be doing. It doesn't always get to me, but today it did.

Another Amelia, who we met in the playground awhile ago, turned 2 today. She also has big brown eyes and curly brown hair. Ironically, the first time I spotted her toddling around I thought to myself that this little girl looked like she could be Amelia's sister. When I heard her father call her Amelia, I couldn't believe it! So today was her birthday and as Amelia and I strolled up to the sandbox this evening, they were having her party there. The birthday girl looked adorable in a little pale pink cotton dress. She said hello to my Amelia and then the party left.

What struck me was, all these Moms. They all know each other. I see them everyday striking up easy conversations about eating habits, potty training, how many words their child has, how they run around too much and are always falling down, or climbing up onto everything, can we get together for a playdate? I can't relate! I don't know any of these things.

Ask me how to vent a baby, cauterize a g-tube site, change a g-tube or hook up a g-tube feeding and I'm your gal. How to suction a baby's nose and mouth out so they don't choke on their own saliva. Ask me to show you how to soak all your tubings, syringes and attachments in vinegar and water so you don't have to throw them out after each use. Talk to me about all the specialists your child needs to see because maybe I know an opthamologist, neurologist, ENT, pulminologist, GI, surgeon and of course the pediatrician that you could use. Not to mention a nursing agency, medical supply company and two pharmacies on speed dial because I call them that often. I can show you how to put on AFO's (leg braces), strap a child into a stander, positioning chair or walker. My back is broken from carrying around my 25lb. child and from bending over to support her while trying to let her feel the accomplishments of taking her own steps. When my 2 1/2 yr. old child cries -- I don't even know half of the time if it's a serious internal problem or if I just put the wrong cartoon on because at 2 1/2 -- she still can't tell me!!!! She can't say "Mommy".

So when I see other Moms on the playground, I don't strike up whimsical conversations because there is nothing whimsical about my life right now. And that is why, after two years, I still don't know more than a handful of people at Bleeker Park.

Happy August

This is video from my phone from this weekend while shopping at BJ's.
She had sooooooo much fun!

It is a time of change. Our Speech Therapist, Sophia had her last session with Amelia yesterday. We haven't found a replacement yet, as August is a difficult time to find new therapists. Her Special Instructor, Melissa is leaving next week and Amelia has a wonderful new Special Instructor, Carol.

Amelia has a summer cold which she has lovingly passed on to me. Now I sound like Kathleen Turner...or a drag queen...you choose. The good news is that we haven't had to pull out the suctioning unit. Just a wipey (recieving blanket), breathing treatments, tylenol and a little bulb syringing here and there seems to be doing the trick.

Nestor has just left for the airport and as always, I'm happy he is leaving to work, but sad to see him go. He finished an episode of a new show called "Fringe" on Tuesday (the same folks that brought you "Lost"), which shoots in NYC and now he's off to LA to shoot an episode of "Medium". Episodics have started up, so hopefully he'll be able to land a couple more jobs before he heads home -- which means we're not sure how long this trip will be.

Next week we had planned a trip down to my parent's beach house in Margate, NJ. I think my Mom will come up next week and drive with the girl and I to the house. It will be Amelia's first time at the beach (the sandbox in Bleeker Park doesn't count) and I'm looking forward to dipping her little toes in the ocean!

The week we spent at Therapies 4 Kids and the 5 HBOT dives we did with Amelia were the perfect little refresher she needed until we get back there for the month of Sept. Toward the end of our stay, her stamina for standing progressed and she did some terrific walking. All in all, A+.

Last week was very busy for us as Eileen (the founder of Bright Steps Forward & Therapies 4Kids) and Annette (the President of the Co.) were in town and we tried to introduce them around as best we could. We took them to the Tony Darrow Celebrity Golf Tournament and also to meet my former bosses, Sonny Grosso and Christina Krauss. Both meetings were successful in different ways and ultimately they will both help Bright Steps Forward in different ways.