Thinking, Thinking, Thinking

Too much thinking perhaps. Occasionally I spoil/torture myself by dipping into these deep philosophical conversions that happen within the confines of my own mind. I'm having one right now. Tonight's topic is: surprise, surprise...Ruby.

I just mentioned on facebook how I feel bombarded by a myriad of emotions lately. Raging from anger to eternal gratitude for my daughter. I hate that we lost the first 4 1/2 months of her life to heart failure. I hate that I can't feed my child in the way that my body and mind cries out for. I hate that she has not formed better relationships with my friends, due to her long hospital stay. And as I said on FB: I hate, hate, HATE that she will come to a moment in her life when she realizes she is "different." And let's be honest...not in the best way.

Now OF COURSE Ruby will be unique in a thousand wonderful, character-building-type ways, but she will also be different genetically. She will learn in her high school bio class (and most certainly from Dan and I before hand) that she is missing a piece of DNA. And despite our efforts to instill in her a sense that this in no way detracts from her humanity...I fear that she will feel it does. I also said on FB that this came to my attention when we were at the Science and Industry Museum. When we walked through their displays on Chromosomal Disorders I felt like they were pointing a sign at my child, who in my mind is perfect, and declaring her to be something other than this. I felt hurt and saddened.

I know this isn't the best attitude to take about this disorder, and although not a day goes by that I don't feel saddened by Ruby's situation...I rarely if ever have these feelings and concerns when I am in the moment playing with my daughter. Because you see, she is perfect. She is such a beautifully complex and loving girl. With so much humanity and, dare I say it, an eternally beautiful soul. So how do I help the rest of the world to see this? How can I help her to see herself as such, with the world telling her something different?

Betty Brinn and Zoo

Dan and I, and pretty much everybody in the family, have been having so much fun with Ruby lately. When I think back on our time in the hospital and compare it to our life now it's hard to believe. As all of you know who've gone through something similar, there are no words to describe how horrible it is to be in that environment. And now it seems that nearly everyday is an adventure. I want to make every single day of life for this girl as amazing as it can be...God she is going to be spoiled! So at least a couple times a week we do something really fun. Over the last week we went to the Domes, the Betty Brinn Children's Museum, and the zoo. Pics to follow shortly :)

I've been thinking about how lucky I am to stay home with Ruby too. And about how much I just love kids and I've figured out why. It's basically because I've never grown up! You know how they say all children are artists and musicians...and they only stop being them when they grow up. Well those who know me know I've never gotten out of that phase! I also think I'm basically using Ruby as an excuse to do all of the things I like. Such as going to children's museums, the zoo, and the park. And I simply can't wait to go trick-or-treating! OK on the the pics!

Betty Brinn

"Look Papa we're squished!"

"Why won't these come off so I can eat them?"

She's really thinking hard here. About what I don't know.

These were a favorite :)


The Zoo x2

That crazy hornebill was picking away at the wood

Ruby vs. Penguin

"What IS that!?"

She has been doing this clappy thing lately when happy! Funny girl :)

"Yay, Ruby"

Watching the monkeys on "Monkey Island"


Finished off the visit by chewing on some pizza crust...an AMAZING feat considering her aversion!

Nice Weekend...Except for Some Coughing

Granny and Rubes at Noodles


Well most of our little family's plans were pushed aside this weekend to make way for Ruby's and Dan's colds. We didn't make it to the Ulster Project fundraiser which I was really bummed about, but Auntie Casey came over and we all had a really nice time just relaxing and watching movies. Meanwhile Dan got a break and went out with some friends to The Old German Beer Hall. Saturday we were supposed to have dinner with another "heart family" but we didn't want to get anyone sick and stayed in for another relaxing night of movies and family time.



Getting a nebulizer treatment...didn't help the cough AT ALL!




"I like you Papa!"


Oh yes...I almost forgot! We also bought a mini fridge for upstairs. No, we're not having midnight cravings, we've just had enough of waking up every 4 hours to refill Ruby's feeding pump with fresh milk. So last night, for the first night in a LONG time we got a night of, well, less broken sleep : ) We simply place her feeding pump bag in the fridge and thread the tubing though the door, leaving the pump out. The milk has plenty of time to warm up to room temp. by the time it travels through the tubing into Ruby's body so it works great! No refilling that darn pump at night!!!



The glorious, and incredibly cheap, mini-fridge.


And can I just say how much I LOVE this weather! Any day above freezing is considered spring weather in WI. Today we took Ruby out for a walk at Bayshore and she had a blast. She sat in the actual stroller part and not her car seat for the first time which she thought was great because she could finally sit up and look around properly.



Such a fun kid :)




She loved it outside!


All in all a really fun family filled weekend. And a quick Ruby development update: she's been grabbing at her toes like mad, rolled over once from belly to back all by herself, and has been drumming on and with all sorts of objects! I just know she's going to be a percussionist like her Auntie : )
Hope everyone else gets out to enjoy the weather this week!

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Food Aversion

So while Dan and I were out for dinner last night we were talking about everything, as usual. And the subject of me being crazy about eating veggies came up. And I realized something that Ruby and I both have in common...food aversion.

Now clearly Ruby's got the rough end of the stick here but I can now fully understand what she's going through when she gags and wretches on liquid or food. I do the exact same thing when trying to eat vegetables. Seriosly if any, and I do mean ANY, veggie that's in it's original form tries to enter my mouth I gag. And while I love the flavor of veggies (I can drink them as vegetable juice or eat them if they are really soft and unrecognizable in a soup or something) I can not handle the texture.

This is how it's been for me since I can remember and it's incredibly embarrassing, especially when eating over at someone else's house. Oh yeah, and I don't eat meat so picture that!

Anyway I know this blog is about Rubes but I just found it oddly cool that I can commiserate with her on a level I didn't think I could. Perhaps over the years as she's working on overcoming her aversions I will work along side her to overcome mine :)


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Valentine's Day at the Domes!

We had sooo much fun today! In order to celebrate Valentine's Day we went to the Domes (indoor botanical gardens). Ruby varied between states of awe and sheer joy--either staring in wonder or kicking and smiling with glee. :)



So happy to be there



Isn't she just the cutest valentine?



Papa, did you see that cactus?



Zoning



Exploring the plants



I kept saying, "we don't want to hurt the plants so be gentle." Ruby just wanted to tear them up like tissue paper!



Here fishy!



Loved the koi



Snuggle Papa



Just taking it all in



Family pic...self taken of course : /



It smelled so beautiful



By far my fav pic of the day

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Hangin Out

So we brought Ruby over to a friends house last night. She hasn't done well with these group interactions in the past, especially at night, but we figured she's grown and over the last few days has been doing much better in the evening. (Except when she's been feeling icky of course). Anyway, it didn't start off well. I lay Ruby down on their couch to get her snowsuit off and their dog, a big dog mind you, jumps on top of her! It was a total accident and I'm almost certain the dog didn't see her but still, it didn't exactly make a great impression on Ruby who from there on out made up her mind that this was a BAD place to be. I don't blame her at all! Needless to say the night ended quickly! But, I did get a few cute pics of Ruby and her baby buddy (or at least future buddy) Sophie, so here they are...






Sophie LOVED Ruby, but after a while the feeling was not reciprocated






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Testing, Testing

Trying out posting from my iPhone. I get on the computer very rarely these days. Just wanted to give a little update on Ruby, who in spite being kind of under the weather lately, is growing and learning so much. She really is amazing. She's sitting up like a pro and has been grabbing and manipulating her toys in more sophisticated ways. She's still working on rolling over, and seems to be playing more and more independently. Such an awesome kid!