Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?

Leave a comment

Is insane

My daughter was hospitalized for four days recently.  She’s four.  They checked her vitals every FOUR hours around the clock.  They ran blood tests every four or every TWO hours.  This does not make for a happy four year old.  She does NOT understand and she does NOT talk…consequently she DID scream.

And she STILL screams when a doctor tries to take her blood pressure.  Or approach with a needle.  Or do ANYTHING that she things is a gross personal invasion…sigh.

Unfortunately, with Lennox-Gastaut Syndrome, she has a lifetime of these sorts of experiences to look forward to; I may just quietly go mad, if nobody minds.


Leave a comment

Can be really depressing

Not only am I dealing with my daughter’s disability – and that well…it is a lifelong sort of thing…now my husband has been a royal pain in the arse.  Apparently, male friends are right out for me…and I should sit at home (with our 6-year-old and 4-year-old) and watch him be sick rather than go out to say, a Children’s Museum…

Really?  You need all three of us?  To watch you sit on the computer?  Sigh.  There is NO rational answer to this.

I am not sure which will drive me ’round the bend first – my husband insisting that we all stay home when he’s sick or my daughter (4, but more like 18 months in a four-year-old’s body) climbing on EVERYTHING…

Leave a comment

A new, less stormy me

Things are going fairly well now.  Well, our older cars are starting to show their age, which is inconvenient to say the least, but given all else that we’ve been through – that’s nothing.   I think we can deal with things that can either be replaced or repaired.

Our daughter is on a medicine that is specifically used for her syndrome – and it is doing wonders.  She has not had a seizure that we’ve seen in two months.  That has not happened since she was 9 months old; she will be four in June.  She is playing with toys, hugging her friends at school, hugging all of the family including her brother.  She chases her brother and responds to his tickles.  She giggles and she is starting to make more sounds.  It is like a light switch was flipped.

Our son is doing really well too.  He’s in kindergarten and has really taken off.  He is reading as fast as we can find books for him.  His speech is getting better and he is absorbing new words and phrases like a sponge.

All of this is so incredible and so exciting…and so exhausting to keep up with.  Believe me, I’m not complaining – just trying to keep up.  I’ve started meditating and journaling, and I’ve discovered that both of these are puzzle pieces to my life that I was missing, but didn’t realize it.  I am now calmer, steadier, more balanced.    I like being me – for the first time in a very long time.