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).


Julie said...


I am so sorry we didn't get to really chat. As you could see Noah is very busy. I get what you said about being glad she wasn't walking yet. Last summer was sooooooo much easier.:) I still struggle with the future at times. Your right what you said about even "normal" kids having there issues. There is no guarantee with any of them. My husband lost a child from a previous marriage in a car accident so I think when things really bother me I hold onto the fact that at least he is still here with us. The hardest thing for me is worrying about him into adulthood. Amina is so precious. Oh yeah and by the way my daughter thinks you are beautiful. I also have to toot my horn. I got my husband a subscription for two months to a beer of the month club. I am such a good wife.:) Take care.


Katie said...

The picnic looked like heaps of fun, but i can certainly see how difficult it would be to see that future staring you in the face - Many WS mothers are terrified to meet a WS adult, one step at a time. Amina is beautiful :)

Heather said...

Again Ginneh, thanks so much for coming out to be with all of us. It is great that Ameen felt better, and I so know how you felt. It is a wake up call.
Your daughter will always be a beatiful person. Hope to see more of you guys. :) Heather

Lisa said...

You have some great pictures of the train, and the new picturese in the above post are terrific. Can not wait to see you all again