Amina Sahar - Honest Awakening

Amiiiiinaaaaa... Where Arrreee Youuuuuu??

2010-01-13T10:21:00.003-05:00

Here I Am!

HAPPY NEW YEAR EVERYONE! A lot of you may have been wondering just WHAT little Amina has been up to over the past year or so...

And the answer is, walking, talking (a lot!), being in weddings, driving her parents crazy and getting cuter and cuter by the day :) I am totally in awe of this little girl and watching her grow has been the greatest experience. She's smart and funny and has a way of touching people that I have never seen in my life. She really knows how to connect with people.

For all of my friends and family that have never gotten the opportunity to meet Amina, I hope that you will finally be able to meet her in 2010. She is really a great little kid.

Facebook has sort of taken over as the main mode for communication but I'm going to try to get back into blogging. We'll see how that goes...

How's Your News?

2009-02-11T07:28:00.005-05:00

THIS JUST IN...

FROM THE NETWORK THAT BROUGHT YOU DATE MY MOM, FROM G'S TO GENTS, SUPER SWEET 16 AND A SHOT AT LOVE WITH TILA TEQUILA, NOW COMES AN TOUCHING, INFORMATIVE SERIES ABOUT PEOPLE WITH PHYSICAL AND MENTAL DISABILITIES. THIS IS NOT MEANT TO BE OFFENSIVE FOLKS, WE JUST WANT TO "PROVIDE A POSITIVE EMPOWERING VIEW OF LIFE WITH A DISABILITY!!!"

Sure you do.

Recently I received a vague message from the Williams Syndrome Regional Chairperson to tune into MTV on Sunday night because there would be something about Williams Syndrome. Now, a rationally thinking person would have thought, "what the heck could MTV possibly have to say about Williams Syndrome?" But as we all know, I am a parent, and when it comes to your children, parent's don't always think rationally. The fact that MTV isn't necessarily known for its journalistic integrity eluded me as I sent text messages to everyone in my address book to tune in at 10:30.

I'm not completely dense, I assumed it would be some sensationalized documentary about a teenager with WS who was looking for a prom date or some young 15-year-old parents who had a baby with a genetic disorder, but I was still surprised to find that the show, called "How's Your News" is a news show where all seven reporters have different disabilities such as Bobby and Sean who have Down Syndrome, Larry with spastic cerebral palsy, and Jeremy, Lucas and Brendan who all have Williams Syndrome.

The HYN website states:
"How’s Your News first began over ten years ago at a summer camp for adults with disabilities in Massachusetts. We were working in video class and searching for a format which could include as many people, with as wide an array of disabilities, as possible. So we began making our own news shows."

Apparently, the show started as a documentary which was financed by Matt Stone and Trey Parker (creators of South Park), has won several film festival awards, and has been broadcast on HBO and PBS. In 2006 they pitched the idea of a series to some networks which is when our beloved MTV decided to finance a pilot and 6 episodes.

The first show featured the HYN team on their tour bus doing interviews with the band Plain White T's, picking up John Stamos as a hitchhiker, interviewing residents on Venice Beach and approaching celebrities on the red carpet at the Grammy's. Jeremy Vest, who has WS got a lot of airtime in the episode. He was really cute and funny. He's a drummer and asked all the celebs he talked to about the drummer in their band. When you think about it, a beat reporter/interviewer is probably a great career for a person with WS, whom often have little social inhibitions and flowery conversation.

So as a parent with a child with WS, what do I think? If this show was on any network OTHER than MTV, I might be more able to accept this. But when I look at MTV's Sunday night lineup, and see that How's Your News fall somewhere between The Girls of Hedsor Hall (where America's rowdiest girls will be sent to prim-and-proper England for a complete transformation) and Real World Brooklyn, well, I start to question their motives. If the show was on let's say A&E, PBS, maybe Bravo, HBO or even a prime network, although I'd still be skeptical, I'd be more likely to believe that the show is actually meant to bring about some kind of understanding and acceptance, instead of just making fun of people. I don't want to stereotype, but when you think about MTV's target audience, its hard to believe the same folks that are into Real World/Road Rules Challenge, are going to be the ones donating to the Williams Syndrome Association. Just saying.

For now the jury's still out, I've only seen one episode, but watch the show and let me know what you think. Next show is Sunday at 10:30pm. Right after Nitro Circus (a stunt show modeled after Jackass). Ha.

***UPDATE:
Let me clear this up...Its not the show or the group that I have issues with! In fact I think that the group is phenomenal. I LOVED Jeremy Vest in the episode I saw. I was very emotional and literally crying tears of joy, seeing a kid with Williams Syndrome on TV. That part I think is amazing.

I guess I was feeling more like MTV was using the group and the show as purely comedic and setting it up to have people view it in the wrong context - one where people would be laughing at their disabilities instead of appreciating the differences. As a parent of a child with a disability, that bothers me somewhat. On one hand, yes I think its terrific that networks like that are having shows with different kinds of kids and adults, on the other hand, like I said before I question the motives of a network that is kind of known for sensationalism.

"Ditto" (thanks aunt Valerie!)

2009-02-11T07:25:00.003-05:00

You think Old Navy had Amina in mind when they made their latest line of pajamas?

Parenthood Lesson #4

2009-01-08T11:21:00.004-05:00

THE GRANDPARENTS ARE NOT ON YOUR SIDE!!!!

Sure they were there supporting you through your pregnancy, helping to pick out baby furniture and cooking you dinner when you had strange cravings. They went to doctor's appointments and were at the hospital when you were in labor for 24 hours. But once the baby comes, they switch allegiance and you are left on your own. The worst part is they will never truly admit it. They PRETEND that they're STILL on your side, and when you call to rant and rave about the baby, or when they visit and you have to reprimand the baby for something, you THINK they're going to agree with you but in the end you're caught off guard by their double-crossing response! They give your kids ice cream when you tell them they have to have fruit. You tell them to buy the $14.99 Elmo, and they buy the $49.99 one instead. You tell them the baby can feed herself and they nod and smile and then soon as you leave, there they are feeding her. You say the kid is in a bad mood and they ask, "well what did YOU do to her???" And there you are, left wondering if these are the same people that raised you. I don't get it.

Happy New Year From Amina!

2009-01-08T10:18:00.004-05:00

Amina is growing by leaps and bounds and her father and I marvel at her accomplishments everyday. She's running around the house, getting into things she has no business bothering, ignoring me when I say "no, no!" and making a new mess of things I just cleaned up - a true toddler in every sense of the word. She's starting to talk in her little husky voice and her arsenal of words now includes: "Akbar", Amina (which she loves to say and repeats all day long and will EVEN annunciate it for you "Aaaaaaa - Meeeen - Aaaaaa") mama, dada, pop-pop, mom-mom, Sweets (our cat), eat-eat, night-night, hi, bye-bye, uncle, cookie and people. We have also been trying to teach her sign language, and she knows the signs for "milk" "more" and "all done" and if you think HEARING baby talk is cute, its nothing compared to those tiny hands and fingers making words to communicate with you. Its almost the most precious thing I've ever seen.

Amina's recent language development has been very interesting, as it highlights one of the central characteristics of Williams which is often advanced language development and vocabulary. This may be why she finds it easy to repeat the word "Sweets" but won't say cat "Wesley" but won't say doggie "Uncle" but won't say aunt and "juice" but won't say cup. I guess that would also explain why "Akbar" was her first word. The down side to this (of course there always has to be at least one) is that although many kids with WS have these advanced vocabularies, like their other developmental milestones, they often delayed in speech, and cognitively they may take longer to fully understand the complex words that are easy for them to pick up. She can repeat just about every word we say, so we have started to really watch our mouths around here and pray that if a bad word does slip out, its "shit" and not "m' f'er" which she will most assuredly be able to repeat :)

(If you happen to have some spare time and find yourself fascinated by Williams and language development, click here for an interesting article I found by Mervis and Becerra on Language and Communicative Development in Williams Syndrome.)

So, overall I am looking forward to a great 2009, with Amina reaching many more milestones and continuing to grow into the lovely little girl that she has truly become. Since Amina is too young to make up her own New Year's resolutions, I thought up a few for her:

1 - I will start referring to my father as Dad and not Ameen
2 - I will listen when my mother tells me "no"
3 - I will not pull OR step on the cat's tail
4 - I will sleep in my own bed EVERY NIGHT
5 - I will start eating vegetables and not just chicken everyday

I'll keep you posted on how they work out!

Amina: Summer Review

2008-09-23T22:32:00.005-04:00

Summer is officially over, and while that makes me a little sad, it also brings a few things I'm looking forward to: cool weather, fall foliage, hayrides, Thanksgiving and dressing Amina in cute Gap sweaters :)

FIRST STEPS

2008-09-10T22:18:00.002-04:00

Amina took her first steps by herself yesterday!!! Her new teachers at UCP were DETERMINED to get her walking! We are so proud of her!

Back To School

2008-08-28T09:11:00.017-04:00

AMINA'S BIG DAY
Today Amina started a new school: Best Friends Early Childhood Program at the United Cerebral Palsy Association of Philadelphia and Vicinity. Their program integrates special needs and typical children and they have a PT, OT, speech therapist and a nurse on site, so Amina can get all of her early intervention services there. Its typically a pretty tough program to get into due to long waiting lists from parents of all kinds of children eager to make sure their kids get quality daycare services and a little extra. We doubted that we would be able to get a spot until Amina was 2 or 3, but with a little prayer and a little luck they had a spot open for this fall.

WILLIAMS SYNDROME STRIKES AGAIN
Since it was the first day, we stayed with Amina for about an hour in the gym with her classmates and her teachers. ALL the kids were screaming as their parents tried to leave. One poor little kid screamed the whole hour. Another cute little boy was fine for a while, his dad snuck out and then about 20 minutes later when he realized he was left alone, he tried to make a run for the door out the classroom. Amina sat and looked around at the kids, and looked at us with sort of a concerned look on her face. She gravitated towards the little boy who cried the whole hour and kept trying to reach out and touch his head and his face. It was so sweet.

WORKING MOTHER GUILT
Amina is not the only one going back to school. Last year I decided that I wanted to go back to school for my doctorate. It was in the midst of us dealing with all of Amina's issues, so I wasn't sure if I was going to apply or wait for a "better" time (whatever that is). I ended up applying, just figuring that if I didn't get in, it wasn't the right time, and I would wait a few years and try again. Well, I DID get accepted so I am preparing to start school next week.

Lately, I have been feeling a lot of fear, anxiety and guilt about going back to school. When we started to sort out all of her medical issues, I took a job working part time so that I would have more time for her. I was going to the hospital at least 2 but sometimes 3 or 4 times a week for tests, therapy and other appointments so there was no way any employer would be able to accommodate me as a full time employee. Her appointments have lessened, and I have started to take more hours at work. With Amina at a school where all of her medical and developmental needs can be met, I think I will feel more comfortable being away from her, but I still wonder if I'll be able to do it. Time is already spread thin and when I am away from Amina I miss her and worry about her.

I hear its typical that working moms sometimes feel guilty about the time they have to spend away from their families and I know there are a lot of parents in my situation, but its just hard. I know that in the long run, getting and advanced degree will be better for our family, but right now it means less time at home and more expenses. Its was to the point that I was actually considering NOT going back. My husband thinks I'm crazy to turn down an opportunity to study at one of the best schools in the country, but sometimes I feel like maybe that degree is just another piece of paper and time away from Amina is what really matters.

BUT I DIGRESS...
This blog is supposed to be about Amina! Sooooo, for her first day, we stayed about an hour to help her (us) feel comfortable with the new environment. But after about 20 minutes, Amina reached out for one of her teachers, gave her a hug and turned around and waved "bye-bye" to us. Before we left we (I) went into a loooong spiel about how she only eats mashed potatoes and oranges and how she doesn't like to sleep, and how she'll never stay still on her cot to take a nap. Of course she made a complete liar out of us.

My little girl is growing up and I'm not ready for it!

Happy 3rd Anniversary!

2008-08-27T14:00:00.004-04:00

Can it be that it was all so simple then?

I met my husband 15 years (and 40 pounds) ago when I was in 9th grade and he was in 11th. It was 1993. Gas was only 99 cent a gallon. You know you're old when you start equating years of your life with how much stuff used to cost. Of course at that time we had no idea that one day we'd be MARRIED with a FAMILY! Young love is innocent and uncomplicated...back then the biggest decision we had to make was which movie to see on Friday night. As the years have passed, things have gotten a bit more complex, with a house and a baby and bills sometimes we look at each other and wonder, "How did we get here? Seems like just yesterday we were going on the prom!" (I'll spare you all and NOT post the prom pictures...I was in my blond phase). But, at the end of the day I wouldn't trade our family or the last 15 years for anything in the world, we got each other AND Amina out the deal. Happy Anniversary!

As an aside, it was 2 years ago on our anniversary that I found out I was pregnant with Amina!

Manic Monday

2008-08-26T08:30:00.004-04:00

I began my day in a mad panic because I couldn't find my wedding rings, frantically turning my jewelry box upside down only to discover the rings were...on my finger. Then later I was explaining to Ameen what a bad day I was having, and remarked "Well at least its Wednesday, week's almost over." He looked at me kinda funny and said, "Ginneh...its only Monday." Sigh.

Now before you go check me into the psych ward, I blame this on stress and sleep deprivation, and thinking it was Wednesday was probably some Freudian slip to avoid our appointment with the FEEDING TEAM at 3:00.

As my best friend Michelle so eloquently put it, "Sometimes you eat the bear, sometimes the bear eats you." I think you can figure out who's got the full stomach today.

The Feeding Saga Continues

2008-08-20T12:28:00.007-04:00

So, as you can see from the picture, Amina likes lemons. She adds this to her list of preferred foods: KFC mashed potatoes, Boston Market creamed spinach, mandarin oranges, mum-mums, Golden Oreos, and of course Pediasure. Aside from those, every now and then we find a food she likes kind of by accident, but generally she eats mandarin oranges and mashed potatoes. EVERYDAY.

Amina's new Early Intervention OT recommended that we add a dietician to her EI team to make sure she's gettin enough nutrients etc. It's kind of funny because there's not much to talk about when she comes...just mashed potatoes and oranges.

Kids with Williams are more likely to have underdeveloped teeth with defective tooth enamel. Amina has four of the CUTEST teeth I have ever seen, and since I am terrified of bottle rot, we've been working on eliminating milk at bedtime. The Dietician told me that it was great that I was being diligent about trying to eliminate the nighttime bottle, but because Amina has those teeth now, I need to get rid of the bottle completely because the bottle is going to start to effect the movement/position of her teeth.

I think its important to point out that this is is opposite of what my favorite folks at the feeding team told me. They suggested that I NOT try to eliminate the bottle because that is where she gets her primary nutrition and calories and we definately did not want her to loose those nutrients, if she refuses to take the milk from a cup (which she does of course). In their defense, it was a few months ago that I saw them, so their position could change but its still frustrating to have all the professionals giving you contradictory advice. Just about every parent of a kid with Williams will tell you that feeding is an issue AND sleep is an issue, so you can imagine how much fun its been when the two issues are merged.

Amina's pediatrician also informed me that its time to take her to the dentist. And she actually said it with a straight face. I said, "You mean MY daughter Amina? The Amina who refuses to eat and can't sit still? The Amina who won't even let me brush her hair or wash her face? You really think she's going to cooperate at the DENTIST?" After a person spends their time and money going to dental school, I think they deserve better than having to deal with Amina's little funky attitudes.

Amina and I have discussed the dental issues and I have explained that oral hygiene is very important. She has agreed to brush (suck toothpaste off her toothbrush) twice a day.

Sibling Rivalry

2008-08-20T12:13:00.004-04:00

As you can see, Amina and Sweets DO NOT feel the same way about each other. Thankfully Sweets has enough sense to just ignore Amina rather than scratch or bite her. I guess she realizes she'd be on a one way trip to the glue factory if she laid one paw on her. (Animal lovers I'm just kidding I would never send Sweets to a glue factory...I'd get Ameen to do it. hehehe).

**Oh, and in case you're wondering why Sweets looks like Mad Eye Moody, she has glaucoma in her left eye. So twice a day Sweets and I have a wrestling match just so I can give her her eye drops. Sometimes she wins, sometimes I do, but day to day you never know how its gonna go. As if one kid with medical issues isn't enough. Sheesh.

If by 'great' you mean she has a rare genetic disorder, has therapy 4 times a week & eats nothing but mashed potatoes, then yeah, she's TERRIFIC.

2008-08-20T01:24:00.012-04:00

"If they ask about me, just tell them I'm CUTE that's all they need to know."

People I haven't seen or talked to in a while always ask, "So how's the baby?" I usually respond by saying, "Oh she's doing great!" Which she is most of the time, but in my head I'm thinking, now do they really want to know, or is "how's the baby" just something you automatically say to a new mom? It's like when you ask people, "how are you?" We kinda expect them to say fine, and if they go into a whole rant complaining about how their bunions are killing them, we're looking at our watch like, um yeah TMI.

Sooooo...depending on WHO asks and WHAT they ask, I guess that determines how much info I provide. Because she's getting bigger now, people are asking all the time if she is walking. When I say no, there's kind of an awkward pause, and at that point I feel obligated to explain that she has some medical conditions and she's a little delayed, etc. Generally, most people mean no harm, they genuinely do want to know how she is doing, but no one EVER expects that the answers to the questions they ask are going to be negative. So when I say "no" she's not walking or "no" she's not eating well or "no" she's not really talking they don't really know what to say.

It gets frustrating sometimes because on one hand I feel I have to defend Amina but on the other hand, I get tired of explaining myself all the time, so sometimes its easier to just say "she's great!" Which is true anyway because she really is great!

On a brighter note, Amina is crawling now, she's all over the place! Crawling and cruising and getting into things. Of course my house is NOT childproof and I have no excuse because I've even had more time than most parents since Amina has been a late bloomer. So that's what I'll be working on for the next week.

"So let me get this straight mom, you mean I'm NOT supposed to touch the things on the coffee table?"

I Know I'm A Slacker...

2008-08-20T01:05:00.006-04:00

I know, I know...it's been a while. But in my defense, I've been busy! I mean look at that picture?!?! Can't you SEE how high maintenance my daughter is? This kid doesn't give me a minute to myself!

Shout out to my long lost friend Nancy for inspiring me to update the blog. Stay tuned for a whole SLEW of Amina updates over the next few weeks...

Daddy's Girl

2008-06-17T23:15:00.010-04:00

What could be sweeter than a little girl and her daddy?

Father's Day gets a bad rap, so I'm personally taking some time out (never mind the fact I'm 3 days late) to shout out all the dads out there. Father's Day approaches and no one rushes to the mall to find the perfect gift. Year after boring year, dads all over the country get ugly ties, wallets or cologne and never complain - they take it all in stride. Dads love their kids as much as moms but for some reason get half the credit, half the accolades and half-ass gifts on father's day. Its really not fair. Today I'm proposing a movement to change the way we celebrate father's day! Next year is your year dads! Everyone who reads this blog: start saving now and buy your dad a really NICE wallet next year!

I knew Amina was destined to be a daddy's girl. She takes after her mother in that respect. I have been so blessed to have a wonderful father in my life, who is always there for me, loving me and supporting me in everything I do. I am happy to say that I think Amina will feel the same way about her father. Sometimes I sorta get the feeling that Amina has maybe taken my place in my dad's heart, but if I had to step aside, I'm glad it was for her. Both of my grandfathers passed away when I was too young to remember, so I never really had that special grandfather/granddaughter relationship, but I always wanted it for my children. Amina is blessed to have both of her grandfathers around to love and spoil her.

Amina Endorses Sure Steps

2008-06-14T19:20:00.001-04:00

When Amina first got her Sure Steps I was doubtful. When Abby, her PT put them on her and pulled that strap tight, Amina yelped so loud I was convinced that after a few weeks of wearing those things, my daughter would be well on her way to having lotus feet that would make any Chinese aristocrat jade with envy.

I am pleased to announce now, however that after a few days, Amina was used to them, they aren't too tight and they actually do a remarkable job improving her pronation and stabilizing her balance. Within a week she was more comfortable pulling herself up, crusing and even standing on her own for a few seconds. We are crossing our fingers, but it looks like she may be walking within the next month or so!

Oh, and they don't come in fuschia, but they do have cute little pink and purple flowers on them and we've been successful in making them work with her summer ensembles. :)

Strasburg Railroad

2008-06-09T00:15:00.002-04:00

Those of you who know me well, know I'm a city girl at heart, but I will admit that its nice to leave the skyscrapers, smog and escalating murder rate behind for a while and enjoy the outdoors. Our trip to the Strasburg Railroad and Cherry Crest Farms with the other families of kids with Williams Syndrome was actually lot of fun. It was HOT (and for once I was kind of happy that Amina couldn't walk yet so I wouldn't have to chase her around!) but the kids had a ball and it was great to be around other people who understand what you're going through. The kids were adorable all the families were friendly and so open and willing to talk about their kids and families which was great. Shouts out to Heather for organizing the trip!

What was interesting, however, is that me and Ameen seemed to switch roles somewhat on how we feel about Amina's diagnosis. I had been the one dealing 'well' with her diagnosis and Ameen was the one that has struggled a bit with it. After the trip however, he said he felt so much better. He got the chance to see the other children and talk to other fathers. I think he realized that although Amina was going to have some health concerns, she would still have her stregnths and weaknesses just like every other kid, we just may have to work a little bit harder on her weaknesses.

For me, it took me a while to process how I was feeling, but over the past few weeks I've been able to come to terms with what those feelings were: sadness, anxiety, worry, fear of the unknown. I think subconsciously I had the idea that although Amina had a lot of hurdles now, that we would just overcome each one, and never look back. I think talking to the other parents made me come to terms with the fact that Williams is going to be an ongoing factor for the rest of her life and even if she does overcome some issues, there may be others down the line that we will have to deal with. I see that although some children may struggle more with social aspects, others may have more health issues and others still may have more behavioral concerns, but no matter what, it's likely that its going to be something, and I worry about what that "something" is.

I try to put things in perspective and realize that even with "normal" kids, you could still end up having to deal with all sorts of issues. And maybe by knowing that Amina has Williams' we are at an advantage because we actually know what to look out for as she develops. Still, when I make those trips to the hospital each week or I'm attempting to give her the fifth different food at one feeding that she's still refusing, I can't help but think of all the other fun things I would rather be doing with her. Don't get me wrong, I LOVE taking care of Amina with all that it entails, but it does get tough sometimes.

Whew. Now that that mood swing has passed...I just want to let y'all know that if you ever want a fun day trip for the kids, Strasburg and Cherry Crest are fun and inexpensive and close enough that I didn't have to spend Amina's college fund to fill up the tank. (Ok so, secretly, still I wondered how it was that we could drive all the way to Lancaster and not go shopping at the outlets, but it was still worth the trip).

"Don't everyone's eyebrows "flare" in the middle?"**

2008-06-04T10:12:00.010-04:00

Williams Syndrome is caused by a deletion of genes on the 7th chromosome, which causes many health problems and similar facial characteristics. (The genetic disorder that most people are probably familiar with is Down's Syndrome which is caused by an extra set of genes on the 21st chromosome. Kids with Down's also have health problems and similar facial characteristics.)

When we took Amina to the Williams Clinic at CHOP, I asked Dr. Kaplan if she thought Amina had the typical William's Syndrome facial features and she said Yes! Which is how she was able to pick Amina out of the waiting room of 4 or 5 kids. She said that Amina has the puffy eyelids, chubby cheeks, flared eyebrows, small upturned nose and full lips. I'm thinking, "flared eyebrows? what are you talking about lady?" But I'm also thinking, those are all the things that make her adorable, but what do I know?

I hope it's not illegal to use another kids picture on my blog, but anyway, when I was first looking up Williams' Syndrome, and I found this picture, I almost fainted because I thought she looked so much like Amina:

It has been really interesting to me, talking to other parents and reading other parents' blogs about their children with Williams. Its also amazing how these kids look like each other, but still look like their parents. I'm finding genetics really interesting these days and wishing that I had paid more attention to Mrs. Bratspir in high school biology. I read on one website that the older the kids get, the more pronounced their Williams facial characteristics become. I'm anxious to see how she changes as she gets older.

This weekend we are going on a trip with other families with kids with Williams. I wonder how I will feel with a group full of little kids that look similar to Amina. Will it feel weird? Or maybe it will feel comfortable, like when you go to a family reunion and see long lost relatives. I don't know but I'll keep you posted.

**(title of post taken from a quote from another parent on Williams Syndrome listserv)

TGIF

2008-05-23T01:25:00.001-04:00

This was a busy week and we are glad its over!!!

MONDAY

2:00pm physical therapy and Sure Step fitting

TUESDAY

10:30am - appointment with pediatrician

12:30pm - special instruction

4:00pm - physical therapy

WEDNESDAY

6:00pm - aqua therapy

THURSDAY

3:00pm - feeding team

We also received the results of the renal and bladder ultrasound. CHOP is so 'efficient' that we will receive the test results before the doctors get a chance to review them and call us. So, of course, then in my neurosis, I have to go on a google/wikipedia/medhelp expedition to try to decipher the medical mumbo-jumbo written on the results. I know what you're thinking, "why don't you just call the doctor?" I do that too, but I have to prepare myself and google does a fine job of that thank you very much.

The results showed that Amina has some mild calsification in her kidneys which could be the beginning stages of kidney stones. Apparently this is also common in Williams' Syndrome. No treatment is needed at this time but we have to limit her calcium intake.

Put That In Your Pan And Fry It

2008-05-23T01:00:00.001-04:00

Oh yeah, the feeding team had some recommendations too (surprise, surprise). They said that Amina is underweight for her height and has a limited food intake. They want me to give her a calorie supplement called Duocal which I need to mix into her food and pediasure 4 times a day. What they neglected to mention was that it costs $89.00 per case, which in addition to the Pediasure should pretty much put us in the poor house. And, it has to be ordered online. This left me wondering, what do families that don't have computers or $89.00 to spare give their kids?

They also suggested that I boost her calories at meal times as much as possible. The handout they gave me states I should add "heavy cream, butter, margarine, mayonnaise, cheese, powdered milk or sour cream" to her foods. Sigh. There's so many things wrong with this I don't even know where to begin. First of all, everyone else in the house (well maybe just me) is trying to eat LESS of all of those things, and now I have to make SPECIAL MEALS loaded with FAT for Amina. Second, just about all of those things have CALCIUM!!! Third, when's a good time to start worrying about clogged arteries? I'm no dietician, but I just can't understand how too much of that stuff is bad for the general population but for a one year old, its all good?

Maybe I can just save some time and money and just give her melted butter and EVOO in her bottles. Or better yet, I'll just let her roll around in some gravy and hope she injests some. Or lard! That's got to be loaded with calories. Yeah, I'll just give her lard patties for breakfast, lunch and dinner and see if that doesn't fatten her up some. DID ANYONE EVER CONSIDER THAT MAYBE SHE'S JUST GOING TO BE (GASP) THIN????

I'm glad the week is over. I know I said it before, but its worth repeating. And I'm glad I don't have to meet with those loosers at the feeding team for another 6-8 weeks.

Do Those Come in Fuschia?

2008-05-19T18:43:00.002-04:00

At the recommendation of her physical therapists, Amina got fitted for her Sure Steps today. Sure Steps are little leg and ankle braces that will help improve the coordination and balance of children with low muscle tone, like Amina.

The guy that measured her said next week he'd give me a schedule of how long she should wear them everyday. I told him I didn't really think they would go with all her open-toed summer shoes but I would incorporate them into her summer collection as best I could.

Life Becomes Her

2008-05-19T02:24:00.006-04:00

Today I read a comment that someone posted, I don't remember it exactly, but the gist was that they had met many more people WITH their child than they would have ever met WITHOUT him. I realized this true for me too. Parenthood is like a little club. And parenting a special needs kid is like being a member of an exclusive club with all the cool people. (As you all know, I'm exclusive and cool, so quite naturally I was going to be a member.)

It has been amazing how people you don't know and probably would have never been in contact with otherwise are so open and sharing intimate details about their family's lives. In just a week, thanks to some kind words and encouragement from other parents of kids with Williams Syndrome, I've stopped feeling like a freak and more like I will actually be able to handle raising Amina. (Sort of)

I am looking forward to meeting other parents and kids with Williams and exchanging notes on what they do when their kids are screaming bloody murder in public, or waking up in the middle of the night, or refusing to eat out of a spoon and wanting to feed themselves even though they can't really chew and choke when they eat thick foods or not wanting to use a sippy cup and wanting to use a regular open cup even though they spill stuff all over the place then mommy has to clean it up and we're already running late to physical therapy and it's your 4th trip to the hospital this week because of all the appointments and...wait, what was I talking about again? Oh yes, it will be nice to meet people with similar issues and concerns.

I'm turning 29 today and I have been reflecting on all the blessings/obstacles/adventures life has thrown my way...and the best one of all, of course, is Amina.

What next?

2008-05-15T00:46:00.003-04:00

Kids with Williams syndrome have a higher risk than normal for kidney problems, so at the recommendation of the Williams Clinic, today Amina had a renal and bladder ultrasound. Normally, I wouldn't worry, but for every other appointment and test that we've had that was supposed to be just 'precautionary' (neurology, opthamology, chest x-ray, MRI, genetics, FISH test etc.) we ended up with something wrong. Supplement that with the fact that she's been suffering from constipation for almost her entire life, I'm a little scared about what they might find. Keep her in your prayers!

Paparazzi: photographers who take candid photographs of celebrities, usually by shadowing them in their public and private activities.

2008-05-15T00:02:00.009-04:00

"Mom, I don't know how, but they found me all the way in Florida at Grandma's house. Is NOTHING sacred?"

More pictures of Amina on her mini vacation:

I guess with a name like "Amina Akbar" even babies aren't safe from airport security. If anyone knows what explosives could fit in a baby New Balance, please let me know.

It's clear she gets sick of all the pictures we take...Sorry Amina! I don't really care!

Aww...such a peaceful sleeping baby. Too bad its the calm before the storm, or after the storm or however the saying goes.

Amina loves the pool!

Baby drool is good for shining up those granite countertops.

Like father like daughter.

I really needed this vacation.

Parenthood Lessons #3

2008-05-14T22:51:00.006-04:00

Reflections on Motherhood - The First Complete Year

WHAT DOES MOTHERHOOD MEAN TO ME?

Here's an overview of what I have learned in my first FULL year as a parent:

1. Before becoming a mother, I thought I knew what the words commitment, love, hurt, compassion, loyalty, dedication and sacrifice meant, but now I realize I was just scratching the surface. Its like when you become a parent, all of your emotions are intensified - you don't just love, you love HARD, and if someone or something hurts your child, it hurts you more than anything you could ever experience yourself. Your children's successes and failures become your own and you want to do everything you can to protect them.

2. All of the things that were really important to you before becoming a parent, become even more important to you. Your family in invaluable, your friends become your family, your financial security becomes less about whether you can splurge on that new pair of shoes for yourself and more about what you can do for your baby or your family now and in the future.

3. On a similar note, all of the things that were insignificant to you before, become even less significant. You have no energy to hold grudges, no desire to be around people that bring you down and no time to participate in idle gossip (well, except if its really good!)

4. Your time is precious. Sometimes I think about how quickly the past year of Amina's life went by and I start to panic, only 4 more years until she starts preschool! 15 years until she gets her driver's license! 20 years until I get to help plan her 21st birthday bash! I find myself rushing home from work early just to spend 5 or 10 extra minutes with her, when before I may have stayed 5 or 10 minutes later to finish up. Getting up in the morning doesn't seem so bad because I know I'll see that little goofy face. I'm sad on the rare days when I'm out late and don't get to see her before bedtime. I'm constantly brainstorming ways I can spend more time with her and less time with just about everyone else.

5. You want to nurture ALL children, not just your own. I work in a field where unfortunately I see abused and neglected children everyday. Before I had Amina, the social worker in me wanted to make sure the kids I worked with were "safe and had their basic needs met". Now, the mother in me makes me pull out my lotion to grease up those ashy elbows, buy a comb and brush from the store to brush those lint balls out, give you my sandwich if you're hungry, $3 to buy something for later and my cell phone number to call me if you need anything else.

6. You lose your tolerance for triflin' parents. As a parent who would do anything in the world to make sure my child has what she needs and wants, people who put their children behind themselves or their mate or their addiction make me sick. The social worker in me understands it, but the parent in me is disgusted by it.

7. The stakes are high. Raising children is the most important and most difficult job I have ever had. Trying to figure out how to manage my life and raise a productive member of society without screwing up consumes most of my time.

There's a ton of other things I can add, but these are the things that have been on my mind the past few days.

Amina was fortunate enough to spend the Mother's Day weekend with her mother and father, grandmother and grandfather and two great-grandmothers. Such a blessing because not everyone is lucky enough to have all that family around.

I know it's a little belated but Happy Mother's Day to all of you Mothers out there! What does motherhood mean to you?

AMINA'S NIGHT AT THE MUSEUM!!!!

2008-04-27T22:27:00.025-04:00

I was never one too excited about kids birthday parties, but I'll have to admit even I had fun at Amina's birthday party. I didn't really know what to expect, and to be honest it seemed like complete chaos to me at times, but the kids seemed to have a ball which was the whole point.

Thanks to all of you for coming and making the party such a success! And, a special, special thanks to all my family and friends who helped with the cooking, face painting, decorating, and arts and crafts. AND, I also want to thank all of you who brought all the TONS of gifts! It really means a lot to us that all of you always support all of our events and parties.

I'd like to send a special shoutout to Scooter and Lisa, who although are 2 of my favorite cousins, somehow manage to be absent from every family event I throw. Keep up the good work guys! Here's an update since you slackers missed it. We had:

FACE PAINTING

ARTS AND CRAFTS

CARICATURES

And of course, TONS of CUTE, CUTE KIDDIES:

Oh yeah, Amina was there too:

Scooter, I hope Brazil was worth it. And Lisa, I don't know what makes you think CALIFORNIA was too far to come for all of this. One word guys "priorities" that's all I'm going to say.

Behind The Scenes: Amina's Night at the Museum

2008-04-27T22:06:00.007-04:00

AMEEN: Ginneh, do you realize Amina's only 1?!?! What were we thinking? How much did we end up spending?

GINNEH: I don't know...we may have gone just a BIT overboard...

AMEEN: Did we pay the mortgage?

GINNEH: I think so...

AMEEN: How about At&T?

GINNEH: Hmmm...not sure about that...but at least everyone we've ever met in our whole life is here, so if our cell phones get turned off we won't need to speak to anyone for a while. We'll just send them the blog and they can email us, no one will suspect a thing!

AMEEN: True, true. Guess that means we better pay Comcast so the internet doesn't get disconnected.

GINNEH: Oh, shoot, yeah. Darn...You think Comcast takes Babies R Us giftcards?

What's That Number One Zodiac Sign?

2008-04-21T22:24:00.012-04:00

TAURUS of course! (And I'm not just saying that because I happen to be a Taurus too!)

A year ago this time, this is what Amina looked like:

What a difference a year can make!

Amina was born on Saturday, April 21, 2008 at 1:14pm at Abington Memorial Hospital by Dr. Lisa Geer-Yan. I was induced because she was small for her gestational age and they wanted to get her out into the world to grow. I was in labor for 24 hours! I tried to go natural, but around hour 14 or 15, things started to get a little rocky and I got an epidural. Ameen and Tasha were in the room when I delivered and Tasha took pictures of the delivery (yucko). My mom got there about 2 minutes later. It was a beautiful, amazing and disgusting experience all at the same time.

Despite all of the ups and downs we've had this year, Amina has truly been a blessing and we couldn't ask for a more beautiful, wonderful, special child. She is and will always be our little princess. Thank you to all of you who have shared your time, your gifts, your prayers and everything else with us over the past year. We are looking forward to many, many more wonderful years with Amina and all of you sharing those joys with us.

In case you were wondering, Amina share's her birthday with Andie McDowell, Tony Danza, Queen Elizabeth, Charlotte Bronte, Sarah Michelle Gellar. (Nina Simone and Mark Twain also died on this date).

P.S - I bet you think Amina looks all cute in her little birthday tiara, we'll here's the scene about 2 minutes before:

Don't be fooled by that pretty face!!!

More pictures of Amina and her friends on her birthday:

Team Amina

2008-04-19T17:07:00.014-04:00

"Uh...mom, can you cool it with the flashes for a minute? I'm on the phone with my therapist. Thanks hun."

Amina has a TEAM of professionals that she see's every week:
- 1 physical therapist that comes to our house
- 1 physical therapist that we see at CHOP
- 1 physical therapist that she sees for aquatherapy
- 1 special instructor that comes to our house

All this is in addition to her neurologist, neurosurgeon, cardiologist, geneticist, pediatrician, Williams Syndrome specialist, and feeding team which consists of a nutritionist, occupational therapist, speech pathologist and nurse practitioner.

They are all very nice people, but some she likes more than others. By the end of the week I can imagine that she's tired of people picking with her, so sometimes she refuses to cooperate. Now, you may be wondering how a 1 year old baby can refuse to do something...I really can't explain it, you just have to see it to believe it.

Here's a few pictures of Amina with some of her "team"

AQUATHERAPY with PT ABBY

PHYSICAL THERAPY with PT KRIPA

Amina Deep In Thought

2008-04-18T17:00:00.000-04:00

From her first days on this earth, Amina would give you this look like she was staring through your soul. I know that sounds a little cliche, but its true. She's always been so intense and serious. She's friendly and smiles a lot now, but she's definately going to give you the once over before she becomes your friend. Sometimes she just puts her little hand on my face and stares in my eyes and I wonder, "What do you see little girl? What are you thinking about?" I definately think she knows some things that I don't know yet. I can't wait until she starts talking so she can finally tell me what's on her little mind.

The cutest kid in the world

2008-04-17T22:18:00.012-04:00

I don't really like sharing my dairy products, but there's nothing cuter than a kid eating ice cream.

Too bad I didn't know last weekend when we took this picture that she had Williams Syndrome and I should limit her calcium intake. Oops.

I'm sure there's many more worse mistakes I could have made. Next time we go to Bredenbeck's, we'll go to the side with the cookies and cakes instead of the ice cream. Its all about creative parenting.

And The Winner Is...

2008-04-17T22:05:00.002-04:00

I hate to say I told you so but...

Williams Syndrome.

Thembi and I diagnosed her MONTHS ago thanks to Google and Wikipedia. Who needs diagnosticians and genetic tests when there's the internet? We've been referred to another doctor: Dr. Kaplan who specializes in Williams Syndrome.

We are preparing ourselves to raise an overly friendly, emotionally sensitive, musically talented daughter with a bad heart and bad teeth.

http://www.williams-syndrome.org/forparents/whatiswilliams.html

I worry about these two

2008-04-16T22:16:00.000-04:00

I'm not sure where this relationship is going, but I'm watching it closely.

Pronounced: Kee - Ar - Eee

2008-04-10T21:04:00.002-04:00

We saw the neurosurgeon, Dr. Sutton today. He was supposed to be advising us on whether or not Amina should get the surgery to fix her Chiari Malformation. Basically he said that she does have a lot of issues, and surgery would probably help, but we can never be sure, but if it was his kid he'd probably do it.

WTF? Dude this is BRAIN SURGERY?!? You're going to have to give me something a little more concrete then it would "probably help" before I let you cut my kids head open. I guess you WOULD go ahead and do it if it were your kid...you ARE a BRAIN SURGEON after all. Who better than to perform a brain operation than a neurosurgeon that just happens to be your dad?

I really try to be thankful that we live in Philadelphia and have access to CHOP doctors (that's Children's Hospital of Philadelphia for all you out-of-towners) and optomistic about all the treatments that are available to us but sometimes I'm feel like if I see one more doctor I'm going to lose it.

No Chicken Bones for this Baby

2008-03-22T20:02:00.009-04:00

I don't know why, but people have been encouraging me to give my child chicken bones for like 6 months now, "Not to eat, just to get the flavor!" What kind of flavor could bone marrow, chicken grease and spit from someone elses' mouth have? That's disgusting! I think its a black thing. I'm black but I still don't understand.

I have realized over the past few months, that I took a lot of things for granted when I decided to have a baby. I guess no one really expects to have a child with special needs. But, even after I realized this was the case, I certainly didn't expect that she would have a problem with eating, of all things.

I can't say that anyone in my family has a problem with eating. Anyone, that is, except for Amina. In fact, I've spent most of my adult years trying to STOP myself from eating, and now, I have to send my daughter to a special clinic to help her to eat MORE. At 11-months-old when most kids are trying to grab french fries out of your mouth, little Amina can't eat anything thicker than pureed baby food and baby cereal or she will choke and vomit. I've been trying to give her different textured foods for a while, but I've slowed down a bit lately because I'd feel really stupid explaining to the social workers that my daughter choked because I was force feeding her cheerios. Its not worth it.

So we went to the feeding clinic where she was evaluated by like 6 more specialists, and we found that she was probably "volume limited" and they made us change her from Similac Isomil Advance formula (expensive) to Pediasure (rediculously expensive). And just when I was getting all excited about being able to buy regular milk instead of formula. It's like God's sitting somewhere on His throne looking down at us like, "Gotcha!"

I guess I should have known when she refused to eat the peaches that we were going to have problems. What kid doesn't like peaches? Amina of course.

Parenthood Lesson #2

2008-03-06T20:58:00.012-05:00

Everything I know about parenting I learned from my cat.

I used to teach a parent education and support group, which was totally rediculous because I was the only one at the agency who had no kids Every week I waited to get cursed out by some irate parent who would bring up the fact that how could I know what I'm talking about because I don't even have kids. Thankfully it never happened, but I could have saved myself a lot of paperwork and condensed the 8 weeks into these 10 simple steps.

1. If you make a rule, stick to it. Otherwise I will continue to harrass you because I know that you don't really mean what you say.

2. Separate sleeping spaces - you have your room and we have ours. You don't need to sleep in our bed.

3. Have compassion for all living things - you chose to bring me here so if I get on your nerves, essentially its your fault so don't bitch about me.

4. Clean litter box daily.

5. The power of touch - it feels good to be rubbed, cuddled and hugged, do it often.

6. Screaming is not effective - I will just look at you like you're crazy and continue to do whatever it was that I was doing.

7. Taking care of something other than yourself is hard work. I have needs and you better fulfill them.

8. Anything of value you have will be destroyed, so if you really love it, keep it away from me.

9. You should be happy there's just one of me because you wouldn't be able to handle anymore - think twice before you decide to bring another mouth to feed in here.

10. Unconditional Love - I will love you pretty much regardless of what you do to me. (Where along the span of development do we loose that?)

Spare Ribs, (Ginneh) Williams Syndrome and other punny genetic anomalies...

2008-03-06T02:42:00.024-05:00

Amina at 29 weeks:

From the womb we knew Amina was going to be a special child, but we had no idea just how special. For the past 6 or 7 months, just about every month Amina is diagnosed with something different. It started off with colic - she would scream for 3-4 hours per night and there was no consoling her. The only thing that got us through was the vacuum cleaner. About 2 1/2 months through, her pediatrician told us that colicky babies are soothed by white noise. We went through a vacuum cleaner and 2 blow dryers playing white noise for hours at a time. I was happy that it calmed her screaming, but white noise is still...well, noise, so to me it was just as annoying, but Amina slept so it was ok. At the moment of conception my sanity was no longer a priority.

Anyway, after the colic week by week the issues came rolling in:

Torticollis
Low muscle tone
High muscle tone
Fine motor, gross motor & cognition delay
Fourth Nerve Palsy
Pulmonary Stenosis
Chiari I Malformation

(Notice how the sh*t gets harder and harder to pronounce?)

And to top it all off, we found out that Amina has 13 pairs of ribs instead of the regular 12 that most of us have.

We are fortunate to live in Philadelphia and have access to the Children's Hospital of Philadelphia, fondly known as "CHOP" for all of you out-of-towners. People come from across the country to access the state of the art facilities and omniscient doctors. Amina has 2 physical therapists, a special instructor, a neurologist, a neuro-opthamologist, a cardiologist and a pediatrician. I mean these guys are supposed to be really friggin' smart. Look at her opthamologist Dr. Liu:

I don't mean to be culturally insensitive but as Thembi noted, who wouldn't trust an Asian in a bow-tie? He just reeks of 1600 on the SAT's. Model Minority for god's sake. My problem is this, every doctor we go to says the same line, "Amina has (fill in the blank with random disorder) but as far as (random disorder) goes its not that bad." Not that bad? Are you kidding? My daughter's heart's not pumping right, her brain's crowded in the back of her head and she has double vision, but its "not that bad"?!?!?! Sometimes I wonder if any of them have children because I don't know what makes them think that they can talk about the prospect of a "simple" heart, brain or eye surgery, and think that any parent would say, "You know you're RIGHT Dr. Liu! Its not that bad!" Bowtie or no bowtie, I'm not buyin' it.

The intellectual in me realizes that from a medical standpoint, these docs see the worst of the worst with kiddies that are far worse off than Amina. But the parent in me is pissed that they minimize every issue. And, for those of you that are parents, you know that sometimes the parent in you trumps all rational thinking. (For those of you that aren't parents, think of that bad ass kid in your elementary school class whose mom always came up to the school all ready to cuss the teacher out cuz she just KNEW her kid wasn't actin up like the school said...same concept).

We are going for genetic testing within the next few weeks so the doctors can determine if there is some sort of genetic condition or syndrome that is causing all of her problems. Williams' syndrome is one possibility that the cardiologist mentioned. It's sometimes called the "pixie" or "elf" syndrome because the kids have elf-like features. Some people have remarked that she looks sort of elfish and could possibly have Williams'. Judge for yourself:

I don't know. I don't really see it. Maybe its just that parental denial. I'll keep you posted on what the genetic docs say.

Labor and Delivery

2008-03-02T20:34:00.002-05:00

Amina will be a teenager oneday. I've already started composing the speech I'm going to deliver every time she gets on my nerves, ahem: "Your father and I were perfectly happy before we had children. Do you know I was in labor for 24 MISEARABLE hours with you? And you treat me like this!? Look, at these pictures! Do you see how happy we were BEFORE I gave birth to you? And do you see what we look like AFTERWARDS? Ever since your arrival on this earth you've been causing us grief! Go to your room!" Still a work in progress but you get the picture.

BEFORE:

AFTER:

Parenthood Lesson #1

2008-02-25T23:20:00.029-05:00

You THINK you know but you have NO idea.

A year ago this time we had no idea that our world was about to be turned upside down. We were too busy at Nordstroms buying overpriced Ralph Lauren sweatsuits for newborns to have any inkling of what we were in for. We were registering for baby gadgets like they were going out of style - wipe warmers with nightlights and rubber duckies with temperature guages. Coordinating 'sugar plum' bedding ensembles and room decor. The comforter, bumper, sheets, rugs, nightlight, picture frame, hamper and dust ruffle MUST all match. They just must. We needed crib ipod speakers, pink of course. We (and by 'we' I mean 'me') were ordering special letters off the internet that spelled her name in pretty swervy letters. We bought paint to paint them purple. Yes, last year this time, we were scouring home depot for the perfect hue for a baby girl's room. Pink...or purple...but not TOO obviously girly pink or purple. Subtle, but enough to know its still pink or purple. AND match the 'sugar plum' decor. We were subscribing to magazines by the dozen: Pregnancy, Fit Pregnancy, Parents, Parenting, Parenthood, American Baby, Babyzone, Kiwi and Cookie. We cut out articles, pictures of nurseries, baby furniture and toys. We put them in clear plastic report covers and put them in binders. We had the binders separated by dividers broken down by subject - development, feeding, furniture, toys, registry etc. We were buying baby books and even reading some them! Reading them with the voracity of a deranged librarian on speed! Don't know what to expect when you're expecting? There's a book for that. Don't know what to expect the first year? Got a book for that. Don't know what to expect the toddler years? One for that too. Got books for daddies having daughters and mommies who work, new parents books, parenting style books, books for African-American parents. We were nervous, but we were EXCITED! We were going to be parents! Not just parents but the BEST parents E-V-E-R.

A year later...

I have no idea where those binders are. I have used the crib speakers twice, the second time was today. The magazines are STILL COMING and adding to the piles and piles of mail stacked on the dining room table. And as for what to expect when you're expecting? Well...let's just say its a hoax because no one, NO ONE can anticipate that. And so began my intro into parenthood and my first lesson learned (of many to come):
Rule #1 - Tabula Rasa: Blank Slate. Come to parenthood with no expectations, no assumptions, no rules; whatever you think you know, throw it out the window and start with a blank slate.

Welcome to the world little Miss Amina Sahar.