Tuesday, September 23, 2008
Wednesday, September 10, 2008
Thursday, August 28, 2008
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!
Wednesday, August 27, 2008
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!
Tuesday, August 26, 2008
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.
Wednesday, August 20, 2008
**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.
"So let me get this straight mom, you mean I'm NOT supposed to touch the things on the coffee table?"
Tuesday, June 17, 2008
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!
Saturday, June 14, 2008
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. :)
Monday, June 9, 2008
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).
Wednesday, June 4, 2008
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:
Friday, May 23, 2008
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.
Monday, May 19, 2008
Thursday, May 15, 2008
Paparazzi: photographers who take candid photographs of celebrities, usually by shadowing them in their public and private activities.
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.
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.
Wednesday, May 14, 2008
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?
Sunday, April 27, 2008
Monday, April 21, 2008
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: