Friday, May 17, 2013

The special life of special needs...

I have said before just how excited I get for Sadie to come home.

Crazy excited!  My relationship with Sadie is very different from the other kids.  Not more special, but just different.  I believe it is because she will always depend on me for her care.  She will always need me.  Because of that, I always worry about her. I think that is partly why I look forward to her coming home each day.  Today was no different.

3:00 was approaching and my count down to 3:10 was underway.

One thing I look forward is the notes from Sadie's teacher in her folder.  Each morning I will write to Sadie's teachers and share with them anything that happened that evening or morning that may affect her day today.  Each day they write me back letting me know what special things they did or what therapies she had that day.  Today was no different.  The note was this;

"Sadie did have a good day.  She was vocal today.  I would make a sound and then she would make it back.  Borculo Christian School's band played for us."

So, of course I was excited to see if Sadie would do some back/forth imitating sound with me!

And she did....


video

.....and I may have teared up a bit. 

Then I read another note sent home as well.  This one was informing us that a class mate of Sadie's passed away.  And I may have teared up a bit....ok....alot.

This is reality.

These children's lives are SO much more fragile than those of my other kids' classmates.  Her life (Sadie's) is that much more delicate than our other kids.  Some of my scariest times are when she has seizures.  Will THIS seizure be the one that could ultimately take her from us?  Oh the winter months!  Fearful that the cold she has may turn into something much worse.  Or scared that the formula, that she at times throws up, she will aspirate on and cause bacterial pneumonia.   My biggest fear....losing her.

I cannot imagine the grief that this mother is dealing with right now. 

With Sadie we constantly remember to live for the here and now...we find pure JOY in the baby steps as the one shown to you here....but the frailty of her life and those of her classmates are always close to heart...even closer today.

Hug your babies tight and always look for the simple things that are miraculous.  Don't take one single moment for granted...and say some prayers for the mom's grieving today.

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