Saturday, June 5, 2010

Musings of the week


















Somebody loves his big brother!


It has been a busy (but in a good way) week. My Mother in Law is here from New Jersey and has been a much needed reinforcement. Because she's here and always wants to help out in any way she can, I was able to blog about all I could remember of my experiences when we first discovered that Elijah had Down syndrome, in a page I called "Elijah's Story", got a long overdue mani/pedi, had a night out with "the girls" to see Sex and The City 2, have had a couple of sleeping-in days and am getting to go out with my hubby tonight (I can literally not remember the last time he and I went out together...not counting errands with the kids in tow.):) Two of the additional highlights this week were our first visit to a program called "First Steps" at Club 21- a learning and resource center established to support children with Down syndrome, their families, and the community and I started back to teaching ballet.

I've been ready to start meeting other Moms. I've been meeting some great people online, and have been in touch with two Moms that are new to this journey: one I call Kindred (because I felt like we were kindred spirits: both due within weeks of each other, both having boys, and both with a prenatal diagnosis of Down syndrome for our babies) and one who I recently met online who did not have a prenatal diagnosis and is still processing it all...well, we're all doing that, but she's newer at the processing than Kindred and I are. I got to finally meet Kindred and her hubby and adorable baby boy yesterday! I also got to meet a handful of other Moms- some with prenatal diagnosises, some without, and all are lovely. It was a relief to sit in a room and be able to ask questions of those who have been on the journey a little longer than me and also to talk about the feelings that we newer Moms are having. This week there was a Physical Therapist there to answer any questions and help in any way he could. Since low muscle tone (or Hypotonia) is present in babies with Down syndrome (to varying degrees), almost all have to have some physical therapy. Elijah seems pretty good with his muscle tone, other than I can tell that his core strength is a little low. The main way I notice that is when he is in his car seat, he slumps forward and I haven't known what to do about it. Joe, the PT, recommended placing a small, rolled up hand towel in his lower back to arch him just a little. We did it and Voila! - it worked! I never would have thought of that! So already the Physical Therapy has been beneficial.

I still love dancing. Even though I no longer pursue it on a professional, performance level, dancing makes me feel like ME again. I didn't think I would love teaching, but I really, really, really do love it! It has been like this for me: I walk into a dance studio and walk out a refreshed, new me. It's a place I can leave everything else on hold. If I'm stressed or worried, those things barely exist while I'm in class. So, after losing my substitute teacher a little early, I decided to go back to my classes 2 weeks earlier than anticipated. It was great! The girls really missed me, which felt good (and I missed them also!) Plus, it was an extra bonus to feel my body again- without a 16 pound weight in the front. I demonstrated a turn and it felt like I was floating!!! My balance isn't quite back to normal, but on that particular turn, I floated around, completely on balance and stopped on a dime. I dropped my composure and shouted, "Wow!! That felt amazing!!! I haven't gotten to feel what it's like to turn in a looongg time!" It reminds me of why little girls like to put on ballet skirts, or tutus, or floaty dresses and twirl. Twirling is amazing! I'm challenging each of you to stand up right now and just twirl around for a second......................................it's good, right?! So, I'm back to teaching again, and I'm using it as a little "Me Time"- plus I get paid which is really helpful. My muscles are so sore that it's painful to sit down and get up again, but it's worth it...

Last thought: I've started reading "Three Cups of Tea" by Greg Mortenson. I've committed to a book club, which is something I've always wanted to do, but never actually made happen. This book is inspiring and it makes me think. In it, Mortenson goes through an incredibly challenging situation in which he truly could have lost his life. Instead he comes out of it inspired to do something for the people who give him refuge, and decides he will build them a school after seeing the poverty despite the children's desire to be educated. It really makes me think about the things that inspire us to act. It's rarely the things that make us comfortable. We're usually inspired to act by the things that test us and our comfort zones. Mothers Against Drunk Drivers was founded by a Mother who lost her child to a drunk driving accident, Eunice Kennedy Shriver started the Special Olympics because she had a sister with a severe intellectual disability, and on and on...So sometimes the things that are hardest on us, are the things that lead us to greatness. This is a concept I'm leaving myself open to. I certainly don't want hardship to enter my life and I assumed it had when we got a diagnosis of Down syndrome for our youngest son. Some of it has been hard...adjusting to news we didn't expect was hard...the NICU experience was very hard. But, it also makes me appreciate life and all of my "boys" that much more!



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