Thursday, February 6, 2014

Power is Back/Isaiah's First Restaurant

So while we were vegging in our hotel room watching a few short Sesame Street videos on youtube...


I received a wonderful message from my awesome neighbor.

Which was then followed by phone calls from 2 of my other neighbors.  I love how they all look out for us. <3

Even though we knew we had power, we decided to stay in the hotel for the night because a) we already paid for it b) we had moved a ridiculous amount of medical stuff and baby stuff into the place, c) it was late and d) it was comfy, we were on a mini vaca!  Bonus: I was much calmer knowing Carl was toasty warm again too.  

One of the many bonuses of the hotel happened to be the free breakfast buffet offered to us (I know, we were living the hard life).  Who would pass up a free meal? Not this family. ;-) But first, we had to figure out the logistics.  We've never gone anywhere with Isaiah besides the doctors' office, DuPont, and the mall (that one time to see Santa before the mall was even open).  We weren't sure how it would work.  Isaiah's stroller is big; would it even fit in the place?  Would he handle hanging out in his bassinet for a whole meal?  If the answer to either of those questions was a no, we figured we'd take turns eating while the other person hung out in the lobby with Isaiah, so after a pretty restful night's sleep, off we went...


Where we going, guys? Breakfast? Oh! I'd like to order a plate of bacon, please.


The hostess was great at finding us a table where we could park Isaiah's stroller and be out of the way.


Isaiah seemed to enjoy his surroundings!


And he loved watching us chomp on our breakfast.

Now, although it was wonderful to be out with Isaiah....it was also hard.  I knew people would look at us  I knew they'd look at him.  Sometimes you'd hear "awww, baby" and there'd be smiles...smiles along with what felt like pity in parents' eyes.  It was hard walking in to a bustling restaurant only to quickly turn into a room full of quiet whispers and eyes as we walked past.  There were arm squeezes.  There was a man who obviously has his own challenges announcing how he'd worked with "a kid like that once" (to which his friend responded "um, you mean a baby? --thanks buddy-- He replied, "naw, a kid with stuff like oxygen up his nose and stuff."  UGH.)

I wanted to hide.  I wanted to protect Isaiah from all the curious eyes.  Boo on me.  

Side note: I didn't actually hide Isaiah.  This was when we were bringing him into the house when we got home.  It's super cold out! :)

All I've wanted to do for the last 5 months is show off our miracle and celebrate him out in the world.  I pictured myself spreading OI awareness and helping to stop the stereotypes that come with special needs.  Here we were, ample opportunity.  I froze.  A sweet waitress came up to say hi to Isaiah and she was asking all of the common baby questions and you could tell, in her long pauses, that she was holding back the real question she wanted to ask.  What's wrong with him?  I wanted to answer it, but just didn't know how, and I knew anything I would have brought up would come out with an attitude that was not deserved (um, hello, no one even asked!).  I never want to spread awareness that way.  I was on the defense for no outright reason.  I knew other tables were listening in and I just couldn't do it.  I kept thinking, "just say 'he's five months old and he happens to have Osteogenesis Imperfecta'!" but then what they "see" is more than his OI.  They see his breathing machines, his tubes, his oxygen... that's beyond his OI.  

I know people can't help but be curious.  In the past, I'd stare at a person in a wheelchair, or with a deformity, or whatever the case was, thinking I wonder what's wrong with him/her, but then I'd quickly look away if I thought they or someone in their family would look my way.  It's so rude to look, to make eye contact, right?  I remember just a few months ago I was walking down the one hallway of DuPont, passing by kids in wheelchairs and looking down, looking up, looking everywhere but at that kid.  

Now I know how it feels to be on the other side and I can't help but think...how depressing for the old me.  So many smiles I missed.  So many chances to have my day brightened.  So many opportunities missed.

I almost want to compare it to... say...staring a woman in a dress that I find pretty.  Ladies, you know what I mean...like "I totally want that dress!" staring.  That's ok, right? You know it is.  And I bet many women, like I've done before, have no problem making eye contact with said woman and telling her "oh man, I love that dress." Everyone smiles.  Maybe you find out where to get the dress.  Everyone feels good.  No awkwardness there.

Why is it ok to do that?  Why is it ok to make eye contact with someone not in a wheelchair or with an "obvious" disability and smile at them while saying hello but it feels awkward and "wrong" when someone does have a disability?

I long to find a way to rid the world of that awkward feeling.

I'm so proud to be Isaiah's mommy.  I want to be positive.  I hope and pray that when people pass by Isaiah, David, and I, that they don't look every which way but at us...because I'd feel really bad for them.  They'd be missing out on meeting one really incredibly amazing miracle.  And they'd miss one of the greatest sights in the world, Isaiah's smile.


I'll be spending some time thinking about how I want to spread awareness about OI.  I thought about this a lot when I was pregnant with Isaiah, but now that the opportunity is here, with us going out into the world, I want to do it right.  Expect some future posts on this in the future. ;-)

Anyways....after breakfast, we packed a load of stuff into the car and headed for Isaiah's pediatrician's office (which happened to be right across the street) for his monthly RSV shot.  Once that was done, Dave dropped Isaiah and I at home and then went back for the rest of our things while I got Isaiah bathed, fed, and napping so that he was rested enough for PT.

Speaking of PT....big changes are coming Isaiah's way....good ones too! I can't wait to share, but since Isaiah is napping, I am dying for a nap right now too (specifically one that involves curling up with Carl the cat).  When I described last night as restful, I meant for Isaiah...I was too busy staring at him to get a good night's sleep...

Boy, it feels good to be home.

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