My Family

My Family

Saturday, February 2, 2013

Abnormal is our normal

I hear people say all the time that they wish that things were just normal.  I have long ago given up and decided that normal simply does not exist.  Or if it does, it is just going to elude me forever.  But I don't mind.  To me normal is vanilla.  Plain, same old, and boring.  It's the path that people choose and then complain about things being the same all of the time.

Our lives, even before Cary, were very topsy turvey and we liked it that way.  My husband and I both are strongly opinionated (stubborn to most), live out loud people.  We like it that way.  It makes us stronger advocates for our children and teaches them to be strong people as well.

My weeks are never the same.  This last week my parents flew in from Colorado.  My kids loved it.  I saw Marvin for a whole 20 minutes this last week.  He was in heaven playing swords, trains, bear hunting, and any activity that involved movement.  I think my dad needs a vacation from his vacation.

Cary and I also made another journey to Staunton and were able to have another round of hearing tests done on Cary.  Even though they tell me things are great and we don't have the whole picture yet, I am pretty sure she has some mild hearing loss in her right ear.  That is what all the testing is pointing to.  It makes sense as the right side of her body has more damage to it.  Her right eye, I believe, is about useless, her right limbs are weaker, so it makes sense her ear has damage.  But it is still a hard pill to swallow.  My husband insists we all have hearing loss, but because Cary's language skills are emerging, not established, any hearing loss can make learning the native tongue harder.  I hate that she has so many problems already.  The poor kid needs a break!

But the school is wonderful.  Kathy and Casey are a breath of fresh air to me.  They have done more with Cary than my vision lady has ever done and in less time!  Kathy put me in touch with people who will help Cary get braille books.  I am so exited about this!!  I am also eager to learn braille and teach it to Marvin.  Making little bumps into words and teaching my daughter to read with her fingers will be an amazing experience.  It's the teacher in me.  Every time one of my students would put sounds together and make a word and then realize they could make a words was a high for both of us!   I can't wait to do this with Cary.  Granted, she is a bit young, but I already feel that the more she is exposed to now, the easier it will be later for her.  And reading is something we love so I am eager to share it in a new format.  She loves books and we spend time reading now, but this will be a new and amazing journey for both of us.

On the journey topic, we will journey back to MCV/VCU for our seizure watch.  I go in Monday and stay until Tuesday.  I am not excited about this.  I will be stuck in the hospital again with crummy food, cooped up while Cary is hooked to wires, and generally bored, anxious, and probably cranky from having to sleep in an ice cold room with a skinny blanket and chair.  Plus, I am just sad about this one.  My husband's grandfather passed away and the funeral is Monday.  I wanted to go badly, but when I called in to see about changing the visit the nero was less than pleased.  They feel like I have put it off long enough and he tried to guilt me into feeling like I was a bad parent for even entertaining the request.  So I got rather irritated and suggested that if his family passed away perhaps he should still come to work because that was more important.  He got the message. Loud and clear.  I got an apology and we were both nicer at that point.  He pointed out some findings on Cary's previous test and just said he was uncomfortable and really wanted her in.  So we will be in.  Sometimes it is hard making choices.  But somehow we muddle through.

All this in a week's span.  You can see why abnormal is our normal.  And frankly, I wouldn't have it any other way.

No comments:

Post a Comment