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!!!!!

Lately...

Amelia and Daddy:
Lazy Sunday at the Hudson River Park

Amelia is doing really well -- besides getting over a pneumonia, she's been doing great. The newest thing Amelia is doing is this acrobatic rolling/sitting up/belly crawl thing. She doesn't do it all the time, but it's starting. Although, the sitting-up-in-the-crib thing is a pretty regular routine now.

Amelia loves school and gets really excited when the bus comes in the morning to take her. Here's what happens:

8:30am - Amelia's nurse, Luiza arrives and buzzes up to me to let me know she's arrived

8:40am - I put Amelia in her stroller and we head downstairs to meet the bus

8:42-9:15am - the bus rounds the corner onto 10th Street from Hudson St., I pick Amelia up out of the stroller, while Luiza grabs her Tinkerbell backpack and feeding pump backpack. We carry her to the little bus and I pass Amelia off to the lovely woman who takes her and straps her into her carseat on the bus. Meanwhile, as Amelia gets strapped in and Luiza gets situated, I run around to the window where Amelia sits (just behind the driver) and wave...blow kisses...and make an ass out myself for the whole neighborhood to see! I love it and it makes her and all the other kids crack up.

HOWEVER, somewhere in this lovely morning routine -- some bitchy, grouchy, dumbass cabbie, scooter driver or whoever will inevitably shout out TO ME ...."awwwww, come on lady. WTF????" To which I respectfully yell back "REALLY? You think they're waiting for me to finish my goodbyes, Jackass????? They're strapping her into her seat, Moron!!!!!" Yesterday I even had my neighbor downstairs with me. She gave our verbal assaulter the finger. Ah, I love NY!

Yesterday, while I was shouting at stopped traffic, Nestor went off to play in the 8th Annual Tony Darrow Celebrity Golf Tournament for UCP, NYC. Nestor's been doing this fundraiser outing since it started -- long before Amelia arrived in our lives.

Back story: It was at one of these tournaments, 3 years ago, when we had first returned from California (where Amelia was born) that Nestor bumped into Ed Matthews, the CEO of UCP, NYC. He asked Nestor how things were going and to be honest, we were in a very dark place at that time. Ed asked "how can we help?". Three days later, Ed, his second in command, Linda Laul and their "get-it-all-done-go-to-gal", Chrysanthia Kaputsos were sitting in our living room, cradling our infant girl and putting together a plan for us. UCP, NYC has been incredible to us, holding our hands through some of the most slippery slopes we've ever had to navigate, as parent's of a child like Amelia -- and they continue to do so. It feels like there is no way they could possibly give of themselves as much as they've given to us day in and day out ...only to come to realize that this is, indeed what they do for everyone. These folks at UCP are angels.

Back to yesterday....Nestor left early in the morning with our neighbor and good friend, Joe Lisi so that I could have the car to drive out to where they were playing this year (about 45 minutes away) and come to the dinner reception and show in the evening. What a fun time! The food was fantastic (I think I ate 5 lobster tails and who knows how much sushi) and the show was, as always, very entertaining. The acts are always great, but it's the shenanigans that happens between the performances that's always fun to be around. Tony Darrow is known for his wiseguy roles in "Goodfellas," "Sopranos," etc. so he always invites his paisans to attend the fundraiser. All the celebs sit together and it's really a blast.

There is always a child honored at the event and this year it was a handsome, little boy named, Maximilian. He's turning 5 on Thursday. Max is small with little head control, he can't move his arms, he is in a wheelchair and his speech consists of sounds and lip movement, with no audible words. But I'll tell you what... he has the sweetest smile, charming personality and is so communicative in his own special way -- it lit up the room and everyone in it. And he is loved. So loved by his wonderful parents and grandparents, who were all there. They are lovely people and Nestor and I had the pleasure of speaking with them for awhile.

Nestor will be leaving next week for Puerto Rico to shoot a film for about a week. Amelia and I will be hanging here for those days until my cousin, Jen comes up on Thursday to drive back to MD with us on Friday. The fun thing is that we're going back to MD because my mother is getting Bat Mitzvahed on Saturday. That's right folks, my 68 year old Mother is getting Bat Mitzvahed on August 8th. She's been taking classes for 2 years and the day has finally arrived. My brother and his brood are all making the schlep from Albuquerque, NM for the event. Nestor will fly into BWI on Friday meet up with us.

I'm sort of happy it worked out like this though because Jen and I are best friends. With both of us having kids and being in different states, we don't see much of each other these days, so I'm really looking forward to getting out with her when she gets here. At least for a few hours while Amelia is with her respite worker and in school, Jen and I can get a glimpse of our lives before husbands and kids......

Summertime and the living is...hectic!

So. Here we are. We've had quite the couple of weeks. Let's begin with the major efforts which was packing up the house upstate. I know, I know -- you're sick of hearing about it. Me too. So let me just give a big shout out to those who sacrificed weekends and holidays to help us make this thing happen.

• Evelyn & Carlo/Titi Evelyn & Uncle Carlo
• Karena & Jonathan
• Mom & Dad/Bubbie & Zadie/Dona Ruth & The Good Dr.
• Art & Terry/Titi Terry & Uncle Artie
• Josette & Nick

WE LOVE YOU!!!!
WITHOUT YOU, WE WOULD NOT HAVE BEEN ABLE TO DO ALL WE DID!!!!

That said, it's really strange for us to no longer have our beautiful place to go to anymore. Sad.

Moving on. After packing up the house into a Pod and having it picked up and put into storage, we brought several boxes, our luggage and a set of golf clubs back with us into the city and have been staring at them since. We've been able to unpack a couple of the boxes...but a few are now playing the role of "ornamental cardboard." Perhaps a coat of paint and they could live there? The luggage and golf clubs have been strategically camouflaged behind Amelia's therapy equipment in the corner of the living room...lurking under her therapy ball. Not too bad tho considering.

Because Amelia was off of school for a week and a half (6/24 - 7/6) before her summer session started, we took off for a couple of days (packing yet again!) for Baltimore to visit my family down there. We had a nice getaway and got to see everyone. BBQ at my cousins, Mitch, Barbara & Hannah's on the 4th and sparklers in the backyard. Lots of time with my sister, her husband and kids -- whom Amelia adores!

The big bonus for me was getting to see a friend of mine from high school, Jodi who has become such a wonderful friend and huge support for Amelia and I through our blogs(see Amelia's Friends link to "An American Mom in Tuscany: Jordan's Cochlear Implant Story"). She is a dynamic and fearless advocate for her son, who has Cochlear Implants and has inspired me beyond words. Also, I actually got to meet her son and daughter too (I've only read about them on her blog) which was really cool! I think she felt the same way when she met Amelia. We've become invested in each other's lives through our stories and tales...to actually meet the person who inspires it all -- and ourselves -- is really.....cool!

We came back a couple days ago and Amelia started school again. Monday night, Amelia spiked a fever. Tylenol and motrin kicked it. Then, yesterday I got the call from school that she had 99.8, so they gave her tylenol and off we went to pick Amelia up from school and take her to the Drs. office. They did bloodwork and sent us to the hospital to get chest x-rays...and as we suspected, pneumonia. A very small case of it, as we caught it very early. Allow me to give you the back story that a couple of weeks ago Amelia was spiking fevers so we took her in for bloodwork and it showed her white blood cell count was at 33.4 (15 being the norm and 20 considered high) -- so her count was very, very high! Knowing there was infection somewhere( we would have had to have done a battery of tests to find out exactly where -- so we decided to treat the whole person rather than put her through more studies), we put her on 10 days of Biaxin. That cycle ended last Wednesday...so you can imagine that 5 days later, when her fevers started again, we were disheartened -- to say the least. But, we caught it early -- 10 days on Augmenten and she'll be good as new. Amelia seems herself, just with heavier and thicker secretions -- but jolly and happy overall.

I also wanted to mention that I was able to attend the Bris of Judah Shai Leshin a couple of weeks ago and felt so blessed to sitting among all his friends and family. Carrie, Scott and Sam, he's going to take great care of you! My heart is bursting for you all. (See the Leshin's blog "In Through The Out Door" from Amelia's Friends.)

Packing for our lives

For those who have never seen the house (16 acres, like living in a park!)...

front
back

living room

What a hectic time. Let's just say from the get-go, Amelia is doing great! Her site is healing really nicely. Her eyes are getting straighter as the swelling is going down. We took her to the ENT and she passed her hearing exams with flying colors! And happily, Amelia is breathing out of her nose a lot more now and sleeping much more comfortably these days.

The biggest challenge recently, for us, is getting our house upstate packed up for our new tenants moving in on July 1st. We have 20 years of Nestor's stuff to pack up, 10 years worth of my stuff -- not to mention the stuff that belonged to the woman who sold Nestor the house -- WITH EVERYTHING IN IT! So now I'm sifting thru a lot of her leftover stuff which is sooooo cool. The house is from the 50's and the couple who lived there built it as their summer home. They traveled the world and brought back lots and lots of stuff. Not sure if anything is worth anything, but it's so cute and kitschy -- I just can't part with much of it. There are sheets from the 50's and 60's still in their wrapping along with dish towel sets, aprons, oven mits, dishes (china and depression glass sets) and table cloths from that era. The colors and patterns are outrageous. I just love it all. So we're packing it up with the rest of the junk we have.

We didn't get nearly the amount of packing done this weekend as I had hoped to, but we have family and friends coming up next weekend to pitch in and help get our POD packed up. I did, however, weed through lots of stuff and throw out a ton of stuff. It's just a never ending pit!!!!! Nestor keeps assuring me that it will all get done...I'm not so sure I'm buying it.

We've also been cleaning house here in the apt to fit the stuff we're bringing from upstate into our tiny apt. It's so hard for us girls to get rid things because, unlike the boys, we need our fat clothes! I wear a size 6 right now...but I might get fat again one day and I'm gonna need that awesome size 10 dress. You know what I'm talking about!!! So frustrating. We have a Housing Works literally, downstairs from us and Nestor can't get my reject piles out of here fast enough -- so I don't change my mind!

Nestor is going back to Miami on the 22nd to finish a movie he worked on earlier in the month. He was supposed to go to Costa Rica from there to work on another project, but thankfully it looks like that was pushed to August, so we can get back up to the house when he comes home on the 26th for another few days to finish up the last of the packing.

Amelia finishes school on the 24th for a couple of weeks and then summer session starts on July 6th until mid August.

And me? Well, I'm just trying not to loose my mind in all of this and keep on the treadmill for my 7 miles a day. Oh and we drink wine...or rum...or...

Back to school baby -- oh yeah!

So Tuesday was Amelia's first day back at school. We drove her as I was too afraid to put her on the bus. The woman on the bus who handles the kids is lovely -- but it's such a hectic couple of seconds as you pass off your non-ambulatory child to this hefty woman who puts them into their car seats, before the bus driver closes his STOP sign to oncoming traffic and I scurry across the street to catch a glimpse of my girl in the window, who laughs at me as I make a fool of myself on the street waving goodbye to her and blowing kisses. But Tuesday we drove her. She did so well that we decided to send Amelia on the bus on Wednesday. I told the bus driver and woman who places the children in their seats that Amelia had surgery on her belly and has stitches there -- and I could see she really placed her gently. THANK GOODNESS! So that's back to normal -- sort of.

Amelia has a new nurse at school, Luiza. She is a sturdy Russian woman who is very sweet, but clearly overwhelmed by the crazy school schedule. Amelia needs a lot of care and Luiza has another little boy who she needs to tend to here and there. But she seems to be getting the hang of it -- as reported to me today. I was afraid she wasn't going to last the week. I'm not sure how Amelia has taken to her, it's hard for me to tell because whenever I see the two of them, Luiza is talking to me about "how hard today" was. On the other hand, she must be bonding with Amelia in some way because Amelia doesn't cry when she sees her -- crying is usually the first sign to me that whoever it is taking care of Amelia isn't making the grade. So we'll just have to see about this one.

All in all, I know Amelia is so happy to be back at school with all her friends. They were so happy to see her too. Amelia's teacher, Patty sends updates daily in her "communication book" (it's a composition book). Yesterday Amelia came home with glitter everywhere...I mean EVERYWHERE! Her diapers were sparkly!!!! So fun!!! Her therapists report that she's doing really well too. I know she's seeing and hearing better and it's really something to see how remarkable her eye contact is since the strabismus surgery. Amazing! She responds more vocally and is into everything. Lots of playing with two hands and incredible sitting up. Amelia's belly is still sore. Her norm is to lie on the playmat on her belly -- can't do that -- so she's sitting up so incredibly, for an hour or so, just playing with her toys. We're also noticing a lot more mouth breathing and she's much quieter than she was.

Next week we go for our follow up appts and to get the stitches out of her site. That should make her more comfortable.

Also, we rented out our house upstate so we're in the process of emptying out 20 years of stuff. Sooooo much stuff. An overwhelming task to say the least. Gotta be out by July 1st. OY! Well, wish us luck -- we're gonna need it.