Saturday, October 1, 2011

Mixed Emotions

Thursday afternoon Haley came home on the bus and gave me a note from her teacher.
Haley has had a runny nose for the second half of the day.  We have had half of our class out with the seasonal bug. Otherwise, today went well.  Haley is finally adjusting to our new situation over here.  Kids really like her, as does all of our staff in both programs  We are beginning to track goals after doing extensive work at building the class... I hope all is well at home.
I kind of knew that was going to happen.  Haley's Big Sis had been sick the week before and then I got a mild version of it on the weekend.  It is really hard when Haley gets sick.  She can't tell me how she feels so I just have to guess.  It sort of helped that I already had it, I know how I felt.  I re-stocked our medicine cabinet and prepared myself for the worst.

We didn't get much sleep that night.

Haley was very stuffy and she got up to have me help her blow her nose approximately once an hour.  In the middle of the night it was time to give her more medicine.  After that I think we got a couple of hours of uninterrupted sleep.

It is better during the day.  She has learned to get herself a Kleenex and blow her nose on her own.  I guess she doesn't do that at night because she is a little groggy.  She stayed home from school and took it easy.

Last night we slept all night. 

I woke up and looked at the clock.  I was amazed and relieved.  Then another feeling swept over me.  Worry.  Dread.  Fear.

Bear with me, I will explain.

Haley gets up at least once a night and comes in to our room and then I get up and put her back in bed and cover her up.  Usually when she climbs back in bed the sheet and blanket and quilt are a mess.  They are either at one side of the bed or the other or clear down at the foot of the bed.  So I assume that she kicks off the covers, gets cold, and then doesn't know how to cover herself back up.

There was a time when she was small and I was less patient that I just told her to go back to bed.  I vaguely remember that.  Some nights she did leave my room.  Whether she actually got back in bed was debatable.  She sometimes played computer.  Sometimes watched TV.  Sometimes played with her toys.  Sometimes fell asleep on the couch.  Other times she didn't leave my room.  She just laid down on the floor by my bed and fell back asleep.

That was a long time ago.

It is kind of weird to think about it now.  I have been putting her back in bed like this for a while.  I don't know how long, or when it started, but it is normal.  I think I have only slept through the night a handful of times since she was born.

And on those occasions I do feel more rested, but I also get this feeling when I wake up.

"She didn't wake me up in the middle of the night.  What if she isn't sleeping?  What if she - wow, I can't even type this - died."

I have no reason to think that she could.  It's crazy.  It just comes over me.  And when it does it is paralyzing.  What would I do without her?  I don't think I could function.  Really.

I lay there with my heart pounding.  Then I listen.  Maybe I will hear some movement coming from her room.  Sometimes I do and then I am OK.  If I don't I get up and check on her.

I know that mothers of small babies do that all of the time.  I did. 

I still do.

She was fine.  She was downstairs on the computer.  I gave her a kiss on the forehead and said "You slept through the night.  Did it feel good to have a nice long sleep?"

"Yeah." she said.

Then I sat down on the couch with my laptop and saw this. 

Where's Molly?  (watch the video)

I often say that we are lucky.  I say that Haley is lucky that we live in a time where there are programs for kids like her.  Where there are medical advancements.  What if she had been born in another time.  Would she have been born?  Would she have developed like she has?  What if we didn't have Early Intervention, The ARC, her therapies, her pre-school, her life skills classes? 

What if we didn't have any support?

We have a long way to go, but we have come so far.  I am glad. 

I have her.

We all do.

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