Tuesday, June 17, 2008

Daddy's Girl

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.

Saturday, June 14, 2008

Amina Endorses Sure Steps

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. :)

Monday, June 9, 2008

Strasburg Railroad

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

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

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)