Mis-Titled Post

The original title for this post was "A Short Post is Better Than No Post." Then I actually got to writing, and, well ... not so short after all!

I keep framing grandiose blogs in my mind (a la my friend Teresa, who is wonderful at keeping both her blog AND her scrapbooks updated ... how DOES she do it?), but I never sit down to get them written. So here's the down and dirty of life in the Norwood/Setzler household!

Medically, we are waiting to get the MRI scheduled. I expect that will happen very soon. I finally spoke with Annie's ped. card. in Boston this week (everyone knows her name by now, right? Dr. Smoot). She assumed that the ENT would want a cardiac clearance before deepening Annie's sedatin for the MRI (an echo while she's just loopy, basically). Dr. Smoot sent a note to the ENT that it wasn't necessary -- based upon Annie's last echo, they don't need to perform an echo before they deepen Annie's sedation for the MRI. Also, she said we shouldn't expect to stay overnight at Children's again. Hooray!

Hearing things like this makes me feel really, really good about how far Annie's heart has come in the past 19 months or so (of course!) ... but -- I hate this -- it's so hard to give over to optimism completely. I hope everyone can understand that! I just had this conversation with my sister while we were in St. Louis visiting everyone. She seemed to treat Annie as, well, "cured." I felt like the big downer when I cautioned her about where we are and what the future may hold for Annie. (I may have been a bit sensitive already -- sorry, Lori -- thanks to several folks who referred to Annie as cured on this trip.) Yes, I am a downer in this aspect. I'm sorry. I don't want to be. But, I read the stories and talk to the parents on the Children's Cardiomyopathy Foundation list serve. I know how unpredictable this disease is. I deal with Annie's medications each and every day. I know that Annie will be affected by this diagnosis for the rest of her life, one way or another (no private health insurance for her after she is off of our insurance -- she will have to go to a big company that does not have pre-existing condition clauses). And I know we will never stop worrying, because there is no "cured" when it comes to cardiomyopathy.

Ok, enough depressing stuff. Annie is doing great and we are -- as always -- so, so grateful. The phrase that comes into my mind most often lately is "I'm having fun being Annie's Mom." (Insert deep breath.) That is a fantastic thing to be able to say, let alone feel. We were so wrapped up in medical stuff, doctors' appointments, and worrying for most of her life that just having fun with her and enjoying her craziness is a revelation.

Annie is a riot. I tell folks that she is destined to be a comedian or a dictator. She is funny and loves to laugh! She knows what she wants, and she finagles ways to get it. If her sister does it, she has to do it ... EXACTLY the same. And, well, like any parent I am struggling to put into words the little personality that is emerging with this curious, active, unaware-of-any-medical-hoopla-just-let-me-dispense-my-own-medicine-no-big-deal girl. I love her. She makes me laugh every day. If I could videotape her entire life, I would. Seriously.

Jamie ... I would say the same thing about videotaping her life. She is officially 5 1/2 now ("Do I get presents for my half birthday?" Nice try, kid!) and in kindergarten. She goes every day from 8:30 until 2:00. (I miss her!) She loves it! (I miss her!) She is the tallest kid in the class by far (not from my genes!), loves to help the younger kids in her multi-age classroom, and surprises me every day in one way or another. She gives Annie crazy hugs and kisses first thing in the morning, but the end of the day brings a meddling little sister who she doesn't find quite as appealing. Ah, the birth of sibling rivalry. As a spectator, it's interesting to watch. As a mom ... STOP SCREAMING AT YOUR SISTER!!!!!!!!!! SCREAMING DOESN'T HELP!!!! SHE'S ONLY TWO! (Ooops ... was I screaming?)

And so life goes on .... Cora (the black lab cross) joined our family on August 7, and the girls adore her. Unexpectedly, we lost my Tasse girl on August 27. She was 14 and had a great life, but I hate the fact that I wasn't here for her in the end (I was in St. Louis when things came to a head). Scott took good care of her and loved her, but she was my girl through and through. I had her for five years before I got married, four years of that it was just her and I. Running. Going to Barton Springs. Playing ball. I miss her.

The fall color is really coming out here in NH. Unfortunately, we're having a rather rainy couple of days. Still, it's beautiful. I hope everyone is enjoying their fall, wherever they are! Warmly, Ross