Being Me…

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

Sleep? Who needs sleep…

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Sigh.  I hate it when I’m tired but not sleepy – and when I get tired at 10 pm, even when the children are at Grandma’s.  It isn’t that I want to paint the town red, but I WOULD like to live it up a little.

Of course, it is 11:19 as I write this so obviously I did NOT fall asleep.  So here I sit – knowing I should go to bed, wanting to go to bed, but not being able to sleep.  Let’s hear it for medications that can both make you sleepy and give you insomnia!  What an incredible invention!  Sigh.

Well, this has given me time to think about things that I want to write about, or need to write about.  My daughter is really on my mind now.  I’m reading a wonderful but heartbreaking book called “Schuyler’s Monster” and it both comforted me and left me hurting for her family.  (That, by the way, is a link to the book on Amazon.  Her father has a website as well.)  I feel less alone having read his book (well, I do have few more chapters).  I wouldn’t wish this journey our families are on, on anyone, but to know that someone else understands the mixture of sweetness, beauty, pain, heartbreak, and wishing you could fix it all is amazing.

I love my children with all of my heart, but I would give everything to “make it better” for Sophie.  I was lying in bed tonight thinking of Schuyler and of Sophie, wanting to hope for my daughter, knowing that a good many things that I hope for her will probably never happen.  I try, generally, to enjoy the good moments thoroughly, to focus on them and not dwell on her diagnosis, but well…you do have to be realistic some times, regardless of the pain.

Like Schuyler, my daughter does not talk.  She is five now, and she does make some sounds but still has not started babbling, like you would expect of most children.  No one has told us that she will NEVER talk, so we continue to work and hope, but …after this much time, you do start to think, “Well, this may never happen.”  What then?  She has started to make the sign (or A sign) for “more”.  And she clearly understands some things that we say.  But we cannot tell how much.

I just don’t know.  I suppose this is just one of my “off” nights.  People ask me how I’m doing – well my general answer is that I have good days and bad.  I suppose tonight I am somewhere in between, enjoying the sweetness that is my daughter and relishing the steps that she’s taken this week, and hurting because I may never hear her say “I love you.”

That’s just the way it goes.  Why is it so hard to accept?

 

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5 thoughts on “Sleep? Who needs sleep…

  1. What you are going through with your children must be so hard. I am sorry for their difficulties.
    That is a weird combination – insomnia and making you sleepy.

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    • Thank you. It is a challenge. Most days are good and I try to remember that. Sigh – it just catches up with me from time to time. And oh yes that is quite a combination. A friend of mine had said his meds did that, and I couldn’t figure out how. Now I understand even if I don’t understand the specifics. Sigh.

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  2. My DeafBlind son was up until 4:00 am this morning…. Now I can’t sleep because of all the emergency crew traffic sounds outside my window this am… Check out my blog on sleep (or lack of it)

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