Fear

As a child, my brother had this rubber caveman mask that was the most terrifying thing I had ever encountered. I wouldn't go into the basement because I knew it was down there. One time, one of his friends called my name from the back of the basement, I carefully and slowly went back and he jumped out wearing the goddamned thing! I freaked!!!! I was crying inconsolably for the longest time (in reality, it was probably only a few minutes -- but in memory, I never really got over it).

As a teenager, I was in a traumatic automobile accident with my cousin's girlfriend and best girlfriend from school while visiting my cousin in Florida. We were cut out of the car with "the jaws of life." I fractured my transverse process, had a hematoma in my kidney and had never known pain like that before. I didn't know if/when the pain would go away or if I would even live to see tomorrow.

As a twenty-something, relationships began and ended. The raw ache it would leave behind each time got deeper and deeper. The notion of opening myself up to the next person seemed an insurmountable feat. Why would I even do that again? It will just end badly. I'll have that hole in my chest again that makes me feel like I need to stop breathing and that life will never be happy again.

At thirty five I had Amelia. Fear has a whole new meaning. Becoming a parent does this to you -- whether your child is healthy or not. Everything you ever thought about becoming a parent no longer applies and everything your parents ever did that you thought was crazy-overprotective or just plain crazy, makes sense.

Friday night/Saturday morning, at 3AM, I knew real fear. I heard my little girl fighting to breathe. My regular course of action, as we've been down this road many, many times with her small, reactive airway, is to give her motrin or tylenol and a nebulizer treatment. Normally, the treatment calms her breathing as the her fever is reduced by the meds and afterwards she goes right back to sleep. Not that night.

The treatment wasn't working. Amelia started to do something I've never seen her do before. She would tense her whole body, make a guttural cry out and cough, A LOT. Over and over she did this. I turned on all the lights so I could really see her coloring and her lips were darker than normal and she was shivering horribly. Without hesitation, I dialed 911. It seemed like too many minutes between me dialing 911 and a voice coming onto the phone. I stayed on the phone with them and was assured there was a team of emergency workers on the way.

I was so sure, as I stood there next to Amelia's crib, that I was losing her. She looked so bad. No longer making guttural sounds, her eyes were rolling up into her head and she was just struggling to breathe. I was racking my brain trying to remember child CPR. I kept repeating "stay with me Amelia, stay with mommy, little girl." The police arrived first, as the 6th Precinct is downstairs, then EMS and the Fire Dept. They took the nebulizer mask and attached it to the oxygen tank and we carried her out to the ambulance. Once inside, I told them I wanted to go to NYU because that's where all her Drs. are. When we reached 14th street the paramedic told me we were going to the hospital closest on 16th st., Beth Israel.

When we arrived at Beth Israel, they put us into the trauma room and started working right away. Heavy breathing treatments, IV and oxygen. Amelia's fever was 104. After a few hours of this, we were transferred up to the PICU. A full regimen of the same continued. There was no sleep -- which was fine for Amelia because she was all wired up on albuterol. Her fever was up and down yesterday, we had two more scary episodes. And so the day continued.

Coffee, cartoons, a private room and an egg and cheese sandwich were our luxuries yesterday. Then, our upstate friends -- Amelia's adopted Titi (Aunt) Terry called and was on her way into the city to lend her support for the afternoon. I had several offers from family to come up from Baltimore (thank you and I love you!!!) but it all seemed too much. This was perfect! Terry's son drove her in for several hours and I was able to run crosstown to shower, pack a bag and get the car, while Terry stayed in the room with Amelia. When I got back, we ordered in some dinner and sat around and "gibber jabbered" for awhile. I think the bit of normalcy was good for Amelia because she perked up seemed much better. She sat up in bed the whole time watching cartoons and playing with her couple favorite toys I brought back for her.

Last night was pretty good, considering Amelia had to have multiple breathing treatments, vitals checked, fights with cannula's and overall hospital stuff done all night long. No scary episodes and we both slept quite a bit. She sleeps even now. Ahhh...there's nothing more restorative than sleep. Amelia's breathing on room air now, hasn't needed O2 since we woke up this morning and they gave her her first feeding late this morning. I think they're moving us out to the Pediatric floor today and if all goes well, we should be home tomorrow.

Home sick.

Amelia and I are both sick and stuck inside on this rainy day in New York City. I'm trying to be slightly productive between blowing my nose and wiping hers constantly. I did, however, go thru a stack of papers and came across her school photo from last year. It's not the greatest pic of Amelia, but it's her very first school photo and is a milestone.

The California Project

The Serrano's, it seems at this point, are Los Angeles bound. That's right, you heard it here first. It looks like we're hitching the horses to the wagons and heading west. We're hoping to be out there by January, so Amelia can start school when they return from winter break. So much leg work has been done already and we have a lot of work ahead of us.

This conversation first began around March or so. Nestor was in LA for pilot season (that's when all the networks green light pilots/shows for the fall and actors swarm to the sunshine state to audition and hopefully book a pilot, which will then, hopefully, get picked up as a show) and he mentioned to me that he and his Manager were discussing the climate of the industry and where it's heading. It's been a rough couple of years for us for several reasons:

1. The Networks/Studios are not paying the kind of money they once did. Almost everything is scale +10% (the 10% is to pay your agent/manager their percentage) -- no negotiating.

2. Most of the shows we watch are shot in LA, with the exception of "Law & Order," "Ugly Betty," "Gossip Girl" and a couple other shows. Not much steady work for Guest Stars, which are our bread and butter jobs. Although Nestor used to be able to work out of NYC -- Networks no longer want to fly actors out to Los Angeles, rent them a car, put them into a hotel and pay them per diem -- so they go for a "local hire." For awhile, Nestor was able to work as a local hire and would make all the arrangements for himself, but that's no longer financially worth it. Also, Productions don't like to be "out of control" of their actors (ie. his flight gets delayed or canceled -- at least if they're calling the shots, they can get him on another flight, etc.)

3. Everyone wants to do TV! The jobs that used to fall into Nestor's lap are now being snatched up by film actors who used to look down on TV. Everyone has/had a series now: Harvey Keitel, Christian Slater, Holly Hunter, Lawrence Fishburne, Chris O'Donnell, etc. Those actors are now looking for a steady gig that keeps them home with their families -- not on location half way around the world. Nestor needs to be in LA so that he can walk into the room and meet the Producer, Director or Writer in person. Not on tape from the Casting Director's office in NYC. It makes a big difference when it comes down to booking a job.

There are so many mixed emotions with this decision. Obviously, we love New York. Our families are based on the East Coast. I've lived here for 20 years -- over half my life. I love the energy and action. Amelia is in a wonderful school here, has an incredible team of therapists, doctors, nurses, respite caretaker and has so many remarkable services here.

California is broke. Nestor's amazing cousin, Colette, who lives in Calabasas (in the Valley) and works in the school system has been a tremendous resource and inspiration. She has an Autistic son who has grown up to be a mainstreamed, extraordinarily high functioning teenager -- and I am not exaggerating when I tell you that the credit goes to his petite mother who screamed until she was heard. Colette has sent me every name and contact number she could find to help me. She even found the school (Sven Lokrantz, in Tarzana) that is the perfect fit for Amelia. I have spoken to the Board of Ed out there and they are awaiting Amelia's current IEP (Individual Education Program) which is a Federally recognized document -- so the funding will come from the Federal, not State, Government (PHEW!) and Amelia will receive all the services in her mandate.

The kicker is The Regional Center. In California the system for people with disabilities is different than most other states. Out there, any services received outside of school is funded by The Regional Center and unfortunately, that is funded by California State. The cuts have been deep. However, I spoke with a lovely woman yesterday who told me that families are getting what they need -- it's hard for me to believe that, but she has told me that they are on the upswing and children are receiving the therapies and respite they need. I guess I have to throw positive energy out there and hope for the best. Colette has assured me that Amelia will get everything she needs...just keep shouting till you get it. I have no problems with that!!!!

The upside of moving is that the weather is wonderful out there -- maybe Amelia won't have to live on 2 breathing treatments a day. We'll be able to buy a house (the housing market is still really, really down out there, good news for us) and move out of our little 1 bedroom, 600 sq. ft. apt. We do have cousins and extremely close friends out there, who stood by us -- so fiercely, when Amelia was born. Also, with Amelia being born out there, we have a whole team of doctors in place.

Nestor has always relished the luxury of living in NYC and working in Hollywood -- or whichever filming location. But it looks like that has changed -- at least for now. We have talked for endless hours about the move, house hunted online and sadly, broken the news to our families. I am so nervous, excited, sad, apprehensive and giddy about the whole thing. Appropriate, for our next big family adventure.

He tells me we'll move back to New York one day, I think, I hope we will.

Snorting Stem Cells: The wave of the future?

This is really incredible research.

We are trying to figure out how to dress Amelia up as a German mouse. Any thoughts? I'm thinking lederhosen and Mickey Mouse ears.


Snort stem cells to get them to brain - health - 10 September 2009 - New Scientist

Shared via AddThis

Last of the Summer Fun

Amelia and I on the Tin Lizzie's in Ocean City, NJ saying "Hi" to (Aunt) Jackie and (cousin)Ezra

The week before last, we went to Margate, NJ for a few days and hung out with my folks and sister, Jackie's (above) family. Always fun, but got rained out from going to "Storybook Land" which is where we had so much fun last summer. We went to the Aquarium instead -- although I think Amelia would have had more fun on some rides. Oh well, next year.

It was pretty quiet last week. Just hanging around and seeing friends and family. Went to the park a lot and had drinks with a girlfriend on Friday night. I actually trekked all the out to Brooklyn!

This is a group that we stumbled on last Wed. evening. Magic hour at The Hudson River Park. It's a group of Tango Enthusiasts who go to different venues each day of the week. It was really beautiful. Amelia is a superb dancing partner! Only in NY folks...only in NY!

Not too much else to report, which is good! School starts tomorrow and I couldn't be happier. Don't get me wrong -- we've had a very relaxing couple of weeks -- but I am really ready to get back to my own morning routine. Also, because Amelia gets so much of her therapy and socialization at school I always feel like she loses out on a lot when she's home for such a long period of time (3.5 weeks) around us boring grown ups.

Big shout out to Ezra who turned 5 yesterday!!!!! Also to my MIL, Regina who had a birthday yesterday too -- turning...more than 5;)

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 better...at 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!!!"

Wicked

My Guy!

Artistic shot

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 here...it'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!!!!!