Monday, January 11, 2010

The absent blogger...



Well I don't generally get on here and type too much but I've decided that it's probably the most therapeutic thing I could do these days.  Life gets so hectic sometimes and it's all I can do to take a minute for myself to read, let alone blog.  Things with Emma have been going great, more wonderful than I ever could have imagined they would ever be.  She is such a sweet and funny little person that is so curious about her world and everyone in it.  She giggles all the time and talks in these huge sentences and of course, not a one of us can translate a single thing, but we smile and say "Yep, what you said!"  She just smiles with that adorable grin full of teeth now and it melts me.  How on earth does she have Spina Bifida??  Somedays I ask myself that over and over.  She is just like Aaron and Madison were as babies.  She's silly, she is so full of life, she gets into everything she can and she likes to tell me when I don't do things correctly and she gives the most wonderful hugs and kisses....she's such a perfectly normal baby!  Sometimes the whole SB experience, the scary parts at least, are passing memories to me and I like it that way.  Then there are days when I see something that triggers an emotion and it's just as fresh as it was the day we found out. 
Tonight, actually, I had what we have started calling an "I hate SB" moment.  I had given Emma a bowl of oatmeal because lately she just hasn't been eating good, too interested in what's on the counter and or what everyone else is doing, so I decided she could try to feed herself (or make a huge mess!) and maybe have some fun.  Of course the bowl was dumped and the oatmeal was smeared in a nice layer all over her tray and it was definitely bath time.  I stripped her down and cathed her (our usual before bath routine) and got her in the tub.  She was having so much fun splashing and playing and her sister was making her laugh too so she was having a blast.  She was in there maybe 5 mins and I noticed a little poop in the water.  Her bowels haven't been doing too great lately, very inconsistent even with juice.  Not really a huge deal but it meant it was time to get out and as I lifted her up she looked at me like she was so bummed because mommy was ending the fun!  I don't know why, but I just thought to myself, this is the parts I hate.  The little things that grab you and it's not even a major deal, something I would have never thought of with my first two.  Then I think, it's just poop......s%!t happens right??  Things could be SO much worse and we are so blessed with how things have turned out for her.  Some days the big "Is she walking" questions gets to me, other days I just smile and say "Nope, she's working on it".  I worry about her bowel management, I worry about her hydro, but other days I just enjoy being her mom.
 
Over the past few weeks, I have been watching Drew help Emma with her standing and I've never seen so much joy in his face.  I love watching the two of them!  She giggles when you try to get her to stand and in doing so, she will fall and laughs the entire way down.  It's so hilarious but at the same time we're trying to keep her serious so she can really try (what are we thinking right??).  I know for myself, when it comes to her walking, I've never had any grand expectations.  Everyone else we know is convinced she'll be cruising by next week but I just like to watch her and I know eventually she'll get it.  I thought I'd be so heartbroken when she didn't walk by one but now I just want to make sure I'm doing everything I can on my end to help her get there.  She's very confident when she cruises the furniture and even holds our fingers but the minute you let go, she'll fall.  She's also turning her feet out and lot and dragging them sometimes, things that we'll definitely be talking about at her next SB clinic on Jan 28.  But for now, just listening to giggles while she tries out her legs is enough for me, I love to see her little determined face. 

Sometimes I just have to keep my worries quiet and remember....she's doing great....she's not giving up!  As I'm sure Aaron would remind me of a quote from the penguins of Madagascar right now....."Just smile and wave boys....smile and wave!"       

1 comments:

Holli said...

Love your posts. Thanks for speaking so honestly. I completely relate to the hate SB days. Sometimes its nice to forget for awhile that there is an extra obstacle for our little ones (and for us) but then when one of those reality moments remind you, it kind of feels like a smack in the face.
Alex is still a baby (although growing too fast) and I can more easily forget about SB a lot of the time but I already dread the age where he is assumed to be walking and the questions from others that bring you back to good ole' SB.
SB is teaching us to be stronger and so much more grateful for things I'm sure I would have taken for granted before being thrown in this new world. Its comforting to know that we are not alone!!
P.S. Love the quote "smile and wave"!!!!!!