Sunshine On My Shoulder Makes Me Happy

What a glorious weekend we had here in NYC!  Tons of sunshine and warm weather.  Amelia was off of school on Friday too, so we had a loooong weekend -- just us girls!

Well...I was able to sneak away on Friday evening to have some drinks with my friend, Joey.  Had a fun time at our usual haunts in the West Village.  Besides the great drink deals in gay bars (2 for 1 until 9pm) I also love them because...and this is key...no man in the joint is looking at ME!  They don't care.  As a matter of fact, they'll tell you if your shoes are fierce...if not, they just go along their merry way (no pun intended).  I did the meat market thing in my 20's into my early 30's.  I'm not selling anything anymore.  So it's really nice to go out with an old friend and just be able to talk and not worry about the scene.

Saturday I woke up with a bit of a headache (no surprise) so Amelia and I hit the street, after Mommy had a couple cups of coffee and bagel.  We went to Bleecker Park (swings, slide & walking on the jungle gym), then to the Farmer's Market across the street, then up to Union Square, down University (I showed Amelia my dorm from NYU "Mommy's first home in New York!") around Washington Square Park (which is closed again for renovations) and back home via Bleecker Street.  And that was just before lunch!  After our afternoon nap (and I did say "our") we made our way over to the Hudson River Park.  It was magnificent!  We went to the kids park and walked all over the place and then watched the sunset.

On Sunday Amelia's BFF, Darmia, had her Birthday party at the Scholastic Bldg in Soho.  Jozette (our Superhero In-home Respite Worker) joined us.  It was so fun!  Amelia had such a good time and our gracious hosts, Auntie Donna and Uncle Shawn were wonderful!!!!  They had circle story time, limbo, freeze dancing with instruments, we made peace sign pillows and blinged up some little cardboard jewelry boxes.  A little girl we met there, Emma made Amelia a jewelry box.  I also took home some jewels and a box to do another one for her.

Somehow when I sat down to do the box today...I ended up with THIS:

That's right, Amelia is the first contestant on "Pimp My Adaptive Chair".  How'd I do?  Never leave me alone with crafty things and a hot glue gun!!!!!  I couldn't resist.  Nestor's gonna laugh me outta the house when he comes home from Miami tomorrow and sees this.

 I have blaringly opted out of writing a lot about the BIGGEST Healthcare Reform Bill of my lifetime -- and one that Amelia will benefit from GREATLY.  I am excited about what this means for all of us ...especially for  my little girl who is medically fragile and has blown thru over half of her lifetime cap in the four short years she's been on this planet -- due to hospital stays, surgeries, medical equipment and nursing care -- just to name a few.   Some are hyperventilating while others of us are breathing a great sigh of relief.  I feel like it's so fresh and fragile -- I feel like we need to digest it for a little while.

Whatever your views, this is the greatest country in the world and I am embracing this change with wide open arms.

Ready for Spring

 

2/18/10 

The view from the bathroom window at my parents' house in MD

My great-uncle, Sid passed last week.  My mother's uncle thru marriage.  He owned a somewhat infamous restaurant in Baltimore back in the 50's that was famous for their "4x4's" which was a delicious (I'm told) 4x4 hamburger, served in a basket with the most mouthwatering french fries and onion rings (I'm sure my father isn't romanticizing them;).  He adored his wife, my aunt Barbara, for ages.  When she passed several years ago, he kept on.  Enjoying his children, grandchildren and great-grandchildren.  He was very blessed, very loved and passed away with all of them by his side.

Earlier today, Nestor and I made our way up to Lincoln Hospital to visit Nestor's aunt/godmother, Titi Luz.  She was on a respirator, being fed thru a tube and unconcious.  Her body was swollen and cool to the touch.  The doctor came to speak to us and told us that the prognosis isn't good, she's having organ failure and they don't expect Titi Luz to make it out of there.  We held her hand for awhile, said our goodbyes and came home to get Amelia off the school bus.  Nestor's sister, Evelyn just called to tell us that Titi Luz has passed.  There is sadness and relief in this for us.   She was Nestor's father's sister -- the last surviving of the siblings.  Amelia is named for her mother and I think she always felt an extra affinity towards her because of that. Titi Luz was married to uncle Angelo, who passed several years ago, for decades.  They never had any children together, but she had a stepson from uncle Angelo.  

I feel very fortunate to have gotten to spend time with this warm, loving, generous, strong woman who was a force to be reckoned with!  She was about 6 feet tall, legally blind and LOVED to talk!!! Wow, did she love to talk!!!!!!  Spanish. English. Whatever!  She lived in the Bronx and couldn't be moved.  Refused!  She lived alone and had attendants who came by daily to help her.  A couple months ago, just after the holidays, we made the trek up to Titi Luz's apartment. On a rainy Sunday, Nestor, Evelyn, Carlo (Evelyn's husband), Amelia and myself all went up there.  Evelyn and Carlo brought the divine food (as always!!!) and we brought the sugar (that would be Amelia) for a visit.  We sat around for a few hours and gabbed the afternoon away.  Titi Luz loved listening to Amelia laugh while she watched her cartoons.

 As we bid adieu to winter this weekend (don't forget to spring forward sunday -- this announcement brought to you by my inner "father" voice)  Amelia continues into her 5th week of antibiotics, per her Pulminologist.  She was worse, then better, worse and now getting better again.  They don't want to pull her off until she stops coughing up the green goo.  I agree.  No fevers tho, so that's a great thing!

Amelia has been very verbal lately and will make sound at anyone who dares to hold a conversation in or around where she is sitting -- particularly if it's me getting on the phone.  I refuse to succumb to her dictatorship...she tells me when to wake up, what cartoon is acceptable and now this????  Uh-uh...no Ma'am.

Obviously, as I mentioned above that Nestor and I went to visit his aunt, Nestor is home from LA.  After a month away -- he finally came home on Wednesday.  He always comes home eventually.  Only to get a call last night (Thursday) that he is flying out on Sunday, for a week and a half to Miami.  Oh well.  Tonight we're having a date night, tomorrow to see his mom and family in NJ and then off he goes!!!!  Ah well, that's show biz.

One Grandmother's Devotion Led to New School for Kids With Disabilities - ABC News

Grab a hankie. This woman is truly inspiring -- and knows the true meaning of "it takes a village!"


One Grandmother's Devotion Led to New School for Kids With Disabilities - ABC News

Adaptive Designs!!!

Da-da-dah! Introducing Amelia's newest and greatest play space! Thanks to everyone who contributed towards purchasing the chair and table from Adaptive Designs. They created sturdy, easy, functional and beautiful furniture for Amelia that actually looks like a child should be using it (for those who know what adaptive equipment looks like understands what I'm saying here!).

This is an action shot of Amelia's doll, Anna as Amelia sits in the chair -- tolerating my little photo shoot! Notice her feet are on a platform. It is stacked with four levels of foot platforms. They can be removed as she grows. Also, the seat has a removable piece that puts Amelia at a 10% decline when she sits in it. This is to engage her trunk muscles. It's "active" sitting.

Here she is sitting at the table. You can see how nice and supported Amelia looks sitting at her big table! She loves playing with her toys there and has become a champion star stacker!!!! The great thing is that we/her therapists/another friend can pull up a chair to the other side and play with her.
Amelia is so proud of herself! What a big girl!!!!! This has become a really important place for her to play because she is safe and supported which enables her to focus. I can't believe this wonderful furniture is made of multiple layers of cardboard. You can't imagine how strong and incredibly lightweight it is! The link to their site is on the lower side of Amelia's blog -- definitely worth checking out!!! Not only are their products incredible, but they offer classes on how to learn to craft your own projects AND they are some of the nicest people you will ever meet!

With Nestor still away, Amelia and I journeyed to Baltimore last week while her school was on break. We spent a lot of quality time with family and friends there. Jackie, my sister and I were able to steal away for a couple of hours while Bubbie and Zadie babysat. We went to the mall and had a ball at Nordstroms and Forever 21 (I am now laughing at the incident where I asked the salesperson if their "sizes run small?" and she told me "yeah, our clothes are for teens, so you should try another store further down the mall" -- ha, ha, hah, silly girl!)

I reconnected with my 7th grade BFF, Jill. What fun! I met her two spunky angels, Sophie and Oliver. They were adorable and Amelia loved meeting them. She especially loved the pictures they brought for her and the beautiful jewelry box Jill made.

Amelia also loved spending time with her cousins, Maya and Ezra. They were so sweet with her and tried to help out when she played -- doing lots of hand over hand with her. I was so happy that they were spending so much time and paying so much attention to Amelia. Below is an unchoreographed moment I caught of the two girls playing seperately while they leaned against each other. I love it!

Restoring The Power To Walk | Parade.com

This is a really important step for so many people. The article touches on CP and Multiple Sclerosis towards the end. Thanks for saving this for me to see, Mom!

Restoring The Power To Walk | Parade.com

Shoes

Amelia having breakfast

Amelia is growing so quickly -- I can't keep up. For one thing, like most women, she has a very extensive wardrobe. Tons of hand-me-downs, plus Bubbie and Zadie take the kids on a back-to-school shopping spree each year before school starts AND we just got out of a very heavy holiday and birthday season. This means that every nook and cranny of our little apt is crammed (very creatively, I might add) with all her little outfits, shoes and accessories. Recently her feet had a growth spurt and I had to run out yesterday to buy her new shoes. It's not as critical with a non-ambulatory child to get them the most expensive, well made and supportive shoes -- when she walks it's in her braces -- so we just go for cute. Works for us!

NEW SHOES!

This has been a curious week of ups and downs. Amelia, Nestor and I have been fighting colds since last weekend. No fevers for Amelia, just lots of secretions. It's been rough because I've been up with her nights -- and I'm trying to fight off my own thing (no rest for Mommies!) -- but really great because she's getting thru this without antibiotics (very uncommon) just lots of respiratory therapy to clear her out.


Nestor and I had romantic dinner on Tuesday nite (thanks Jozette! -for the giftcard) and on Wednesday I drove him to the airport to go to LA for a month or so. Usually these drop offs are very hard for me, but not this time. We have had such a great couple of weeks together, alone and as a family, it made his leaving easier. Strange -- but I really felt ok when he got out of the car. Usually I drop him off and as I pull away from the curb I start bawling like a baby. This lasts until I get lost on the ramps getting out of the airport and then thru my haze of tears and swollen eyes I have to figure out where the hell I am and how the hell I'm going to back on the highway or parkway -- or whatever the heck they call the damn thing that gets me back to the city. By then I'm just annoyed and forget all about why I had driven all the way out to the airport in the first place!!!

So Amelia and I got thru the week unscathed. Still fighting off our colds. By yesterday I would say we're both over the hump and sleeping thru the night nicely. Ahhh. Yesterday my friend Sarah came into the city to visit us for the day. It was really nice spending quality time with her. She's one of those friends who's been in my life for so long -- thru different apartments, dogs, boyfriends, husbands, etc.... Someone you know will be with you till the end, ya know? Anyway, we journeyed to Chelsea Market and Amelia and I settled in to watch this really amazing String Trio playing live in front of Amy's Bread, while Sarah went to get a coffee. Amelia was really digging it! I wanted to give the band a dollar but only had a $20. I asked a jolly 60-ish man behind me, who was there with his family, if it would be rude to take change out of the musician's tips, at which point, he reached into his wallet and gave me a dollar to give them. I laughed and refused, but he pushed it into my hand and said he and his twenty-something (son? nephew?) had already tipped them. I felt so odd. Like I was standing with "Every Uncle". I really loved this happy man and his sweet family in those moments. When Sarah returned with her coffee she offered this man back his dollar -- to which he laughed a jolly laugh -- and told us to please keep it -- or give it to the band. Yes Virginia, there is a Santa Clause...he hangs out at Chelsea Market in the off season!

Today Amelia and I are doing the Mother/Daughter hang for Superbowl Sunday. Amelia isn't really into either team, so we'll probably just find some chick flick to watch.

Happy Birthday Sunshine!

It's been such a busy couple weeks. Running from doctors appointments, to UCP for new AFO's (Ankle Foot Orthotics) & to look at new adaptive equipment which we are very excited about, to visiting Adaptive Designs (see link on side bar list), which is one of the most incredible places we've ever visited! Amelia got sick last week and is on 2 weeks of antibiotics, eye drops, ear drops -- along with all the usual meds and respiratory routines. Plus, she shared with Mommy, so I got pink eye too and some kind of sinus thing. We're much better now.

So, Adaptive Designs is a place in NYC that builds furniture out of heavy duty, dense, corrugated cardboard. They bind together layers of it so it feels as strong as wood -- it's incredible. And because it's cardboard they can build ANYTHING! If you can dream it, they can build it. We ordered a high sitting chair with a 10% decline insert that forces the person sitting in it to engage their core muscles -- I think I need one. Also, they're building her a table with an attachable board that can be positioned from flat to 90 degrees and is covered with velcro so we can attach toys to it. We're so excited! We were also able to borrow a scooter from them (if you go to the website, go to Hannah's story -- it's the big wheel scooter that she outgrew in the pics). And my favorite part about their furniture is that it is all painted up beautifully. So much of the equipment, that our children need, is institutional looking -- everything there is a work of art, all hand designed, built and painted. They also work on the "no child left behind" policy which means -- your child needs it -- we're gonna build it -- and we'll figure out how we're getting paid later. The people there are truly, all heart!

We saw Avatar a couple weeks ago (if you haven't seen it, you must -- in 3-D, we want to go back to see the 3-D IMAX version -- which was sold out). Nestor and I were struck by one of the lines, "I see you." I love this line. It's how I feel about Amelia. She can't speak, eat or walk -- but I see her. I see this little soul and I know this little person. She is goodness, innocence and love. But she is also opinionated, sassy and demanding. Amelia can't tell you exactly what she wants, but boy will she let you know -- her way! She has perfected her laughing, happy sounds, head shakes, signing "give me", wailing and a little crying (Amelia is quite the diva-drama queen). She makes her voice heard.

Amelia's birthday is on Sunday. I can't believe how much my life was changed *forever* four years ago. I cherish every moment with her.