Thursday, August 20, 2009

Vacation 's all I ever wanted...

Well, Amelia finished summer session at Roosevelt and has three and a half weeks off until school starts again. Things have been really hectic here and it's been hard to muster the energy to blog it all down...but here goes.

Since we last saw you, my cousin Jen came up to NYC and picked Amelia and I up and drove us down to Baltimore for my Mother's Bat Mitzvah. My brother, Jeff and his family were already there from Albuquerque for the festivities. That evening we went to my sister, Jackie's for Shabbat dinner and later that night, Nestor arrived from Puerto Rico. The next morning was the big event and we all arrived on time, as directed, by 10am. Mom claimed that she would be up, doing her Torah portion by 10:15am -- don't be late. Well, Mom didn't get up until around 11am. We couldn't have timed the whole thing 11:02am, Amelia, my niece, Maya, Jen's son, Austin, etc -- all the kids had the 1 hour meltdown and had to go out into the hallway. HILARIOUS! It was like a bad comedy to see all of us Mom's making a beeline for the exit with screaming kids in tow. They all had a 1 hour limit and it's just too bad for everyone else. The gathering after was really nice. It was wonderful to see all our family and friends on such a joyful occasion.

On Sunday we ventured back to NYC because Amelia had her last week of summer session. She did really well. Along with everything else that's been living at school, all her art projects were sent home. So now I have Styrofoam bowls with shredded green tissue paper and cutouts of birds, a ziploc bag with clear hair gel, red glitter and plastic fish, loads of colored in pictures with feathers, felt, buttons, beads, bows and pom poms glued on and last but not least, two big, clear but blue tinted plates, which have been glued together edge to edge, with cutout fish inside -- so it looks like an aquarium. Her teacher comes up with amazingly creative projects -- our little apt is filled up fast! But I love it all!!!!

This week has been our first official week of vacation, although, we did take Amelia to the surgeon's office on Monday to have her G-tube replaced. It was slightly traumatic and I was pretty sick about it all day until we went. For those just tuning in, Amelia had four surgeries done just under 3 months ago -- one of which, was sewing up her existing G-tube site and creating a new one, just above the old one. This had to be done because Amelia's old site had become too big and the gastrostomy tube (GT) was no longer working properly (milk would pour out from around the outside of the tube). So, the surgeon did the new site and put in a new GT called a Bard button. Amelia's last GT, called a Mic-Key, could be switched out by us at home because it has an inflatable balloon (you place the uninflated balloon into the site in the stomach and then fill it with water -- the balloon is on the inside of the stomach and holds the GT in place). The Bard button is different, in that, it is put in through the esophagus (she was under anesthesia for the surgeries) and is held internally in place, at the site, by a hard, mushroom shaped piece. The reason the Bard was put in is because it is more stable than the Mic-Key -- it won't come out -- and while the new site is healing that's really important. However, these buttons all need to be replaced every 3 months for sanitary reasons -- so we knew the Bard was going to have to come out sooner or later. Well...I had no idea how they did this. Silly me, I thought they would take it back out through the esophagus. Oh no, they yank it right out. The Nurse Practitioner, who is a robot -- I swear. Even she told me (in her androgynous voice) "this is gonna hurt!" She did it so fast I didn't even know why Amelia was screaming until I saw the gauze over the site and saw the NP reaching for the Mic-Key to insert it. I welled up a little and Nestor was holding his head in his hands. OY! Enough already.

So now we're just floating through the week until we go to the beach, for a few days, next week. Our in-home respite worker, Jozette, the extraordinaire, has been here this week to give us a breather in the afternoons --which is sooooo appreciated!

Yesterday, Nestor and I went up to The Highline. For those of you who don't know about this, it's the newest attraction in NYC. The city wanted to tear down some old elevated train tracks. People in the community protested with the idea of creating a usable space out of the deserted stretch of railings and concrete, which starts at 12th St and 10th Ave. and goes up into the 30's. What has been created is really incredible. Walkways have been created, utilizing the old structure and wild flowers and grasses have been planted. There are benches and wooden chaises that look out to the river and surrounding buildings. There are huge buildings that were built over the tracks and now provide a shady underpass. When Nestor and I went there yesterday, there was a downpour, a real summer storm and we, like everyone else there, scurried under one of these big underpasses, snagged a cafe table and two chairs and waited it out. What a terrific place to people watch. I recommend it if you're visiting. (See pics)

From the street

Up on The Highline

"Hey Kid, don't play in the tracks!!!"


My Guy!

Artistic shot

Tuesday, August 4, 2009

Chick Flick + Novel = Teary; WARNING PMS ZONE

"Hey, get out of my water glass!"

"Okay, you can have it!"

Nestor left this morning to shoot in Puerto Rico for the week. It's always stressful the night before and I usually don't sleep well. He had a car pick him up at 6:30am. Around 6:25am he came into the bedroom, gave me a kiss and hug goodbye, then gave Amelia a kiss and slipped out the front door. It's only a few days, but I always have very mixed emotions about his leaving.

He's going to work and that's always priority around's the leaving. As Mom, I don't get to leave. I'm here...ALWAYS. Day in and day out, that's what I do. It gets to me, because I don't even know how I could separate myself to leave Amelia. Nobody knows her sounds or coughs like I do. Amelia can't tell us when she's not feeling well...but even in my sleep, I can hear her breathing change and I know I need to wake up and give her a breathing treatment.

The thing is, I know for most of my friends and family, who have kids, that this is a temporary setup. There will come a day when you won't need to listen for your baby's breathing patterns, they'll call out to you or get out of bed, walk to your bedside and get you. I pray for the day that this happens with Amelia.

Which leads me to my teary afternoon. Whenever Nestor leaves town, I take a little opportunity to watch a chick flick that I know he would forbade me to even play on our TV. Today it was "Mama Mia" (I live in NYC and am the last person on earth who hasn't seen the B'way version). I was happily watching this flick when it got to the end, where Meryl Streep is singing to her daughter about all the cherished memories she holds as snapshots in her mind. It is here that my floodgates opened up and whoosh...I couldn't stop crying. I tend to not think too much about "what will be" because to be honest, with a special needs kid, you just don't know. The greatest things could be just around the corner for Amelia, but as I watched this mother get her daughter dressed for her wedding I couldn't help being sad. I don't know what lies ahead for my little girl and I want her know every joy life holds.

On the other hand, being the glutton I am, I am also reading a novel written by one of my all-time favorite authors, Kathryn Harrison (read Poison if you want a really fantastic intro to her writing), called Envy. I haven't read much yet, but it's about a married Psychoanalyst, who is a sex addict and a father of two healthy children(boy & girl), in which the little boy drowned. It's the unthinkable to lose a child. So here I am on the other side of the spectrum, crying while I read my book, thanking my lucky stars for the gift I have, Amelia.

In other words, my child may never live the life that I imagined for my child when I was carrying her in my belly. I don't know if Amelia will walk, talk, eat, go to college, fall in love and get married, have children...but she will live the fullest life we can give her. The roller coaster that is Amelia, is the most exciting, fearful, tearful, exhausting, ecstatic and blessed ride I have ever been on. Ahhh, parenthood...I guess none of us ever get to actually leave it...EVER!!!!!