Friday, January 28, 2011

Day 32: Extension

Another snow day. All told, this week the kids have only had one day of school. And, in my opinion, today was the ickiest snow day yet. All day long it was sort of snow-raining with the kind of frigid dampness that permeates your bones and refuses to budge until you at least ingest two cups of hot cocoa.

So, the kids stayed inside with me all day. I'm afraid that I wasn't the most fun or stimulating mom today, either. Between trying to keep work afloat (two client calls from inside the bathroom, many emails answered, plus one rush invite out the door!) and getting ready for my sister's baby shower this Sunday (3 dozen red velvet cupcakes with raspberry filling baked! 4 dozen sugar cookies rolled out and sprinkled! Decorations up! Pasta sauce made!) I was a little bit distracted. I wanted to clean the house too, but I figured that cleaning anything on a day when the kids are stuck indoors would be a bit like trying to shovel the walk during a white-out.

Fortunately, the kids kept themselves entertained. For gross motor stimulation they took down the balloons I had carefully placed as baby shower decor and chased each other around the house with them. As a fine motor exercise they stole cookies very quietly from the counter top using both a strategic pincer grasp and well planned supination (I pretended not to notice).

The day wasn't a total educational loss, though. This morning Brian and Simon DID make it to KKI. It turns out that today was NOT to be Simon's last day of the CIMT program. They want him to have five full days of bilateral therapy, so we have an extension through Monday. I'm not complaining. I'm hopeful that Monday will be a normal school day (please God!) and, as soon as I get Olivia off on the school bus, I will rush to KKI to squeeze as much information out of the OT and the PT as possible before we're totally finished.

Although, even then we're not going to be really totally completely finished. As soon as we can sort out our insurance's therapy benefit (Fun with Insurance! I'll save my health care rant for another post...) for continued outpatient services, we should be on board for once a week OT. Initially it will be with the same OT we are currently seeing, then possibly transferring to an OT in the KKI Outpatient Center (right now we are a part of the Specialized Transitional Program). I'm really glad we can continue on in some fashion, we've made so much progress, and learned so much about Simon over the course of the last month that I truly believe that more will be very beneficial (hear that, Carefirst?).

Speaking of things that should continue, I think that I will continue the blog. Not on a daily basis (aside from the kids and husband, I already have two jobs and when classes start next week I will be lucky if I have time to think, much less write down cohesive thoughts), but at least once a week. I had originally intended this journal to be a contained project, with a finite beginning and end. But, let's face it, life isn't like that. Our story isn't like that. As a commenter on yesterday's post suggested, I have learned a lot through this process, and I do think that I have more yet to learn. Going back and reading about Simon's progress - our progress, makes me appreciate where we have been and where we are going in a very tangible way.

Not to mention the fact that it is kind of fun.


  1. I'm so glad you are continuing your blog!!! I know when you started it you felt like you needed to fill some important "niche" in order to be blog worthy. You don't have to. You can still be some random other mom blog, and it's still just as good. Even if only your very close friends and family read it, it's an outlet for YOU. Blogging can be a great stress relief, a great way to get things off your chest, and just plain relaxing. Take it in stride and blog when you feel up to it, but I'm so glad you will continue. I, for one, am very glad to have been able to read about all of you all, but especially Simon.

    To be honest, I knew that Simon had "something wrong" as someone had said to me once, but not being close to you all, I had no idea what. I'm so glad to be able to understand him, and your plight much better. I feel like the next time I see you guys I really want to give you a HUGE hug and just tell you how amazing you are.

    I also have a friend here in town whose son has CP. Your blog has helped offer me a lot of insight into her journey with her son, as well as ways to react to children with "special needs". I've always been sensitive to special needs kids in not staring, but I will definitely remember to make the extra effort to smile a reassuring smile at the parent standing there with them. I know that you all are not only some of the strongest people on the planet, but often sometimes the most sensitive. (BTW, I'm not entirely sure based on your description and my prior interaction with Simon that I would notice that he was different. Sometimes I think when we're the ones experiencing it we tend to be more alert, assuming everyone is noticing. Or maybe they always are. Or maybe I just have an overly drooly kid too. ;) )

    You are one of the strongest people I know, and I'm so inspired by your writing, and following your progress. I look forward to seeing what else you have to offer the blogging community, and I'm hoping amazing progress for Simon! You have set some amazing stonework for him, and it sounds like he's willing to take off with it. He is going to go really far, and it' because of you! :D You rock, mama!

  2. Oh! I am so glad that you're going to continue writing. I think that all blogs start out at a frenetic pace and then at some point, one finds a writing rhythm that just works. I am trying to rediscover mine as you discover yours. Yay!

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  4. I've loved reading this, Laura, and am so happy you'll be continuing to publish here. I'll continue to check in frequently and look forward to updates on Simon, you and your family.

    On a related note, your post the other day about the frog in water really inspired me to do a better job reflecting on and writing about my own experiences of parenting, on a more regular basis. The point that really struck me was how, at some point, you realize you've raised a PERSON; and that realization comes so quickly, no matter how difficult and many the hurdles were on the journey there. With each new thing, you take it, adjust, and move forward.

    Being caught in the day to day of the child raising can really make a parent loose perspective on how precious little time we have with our children while they are young, how quickly they grow up, and how we shouldn't loose sight of that.

    I hope you'll look back on your writing here with fondness as it will clearly remind you of Simon's courage and strength (and yours and your husband's as well).

    All the best!