Thursday, November 15, 2012

Finding color amidst the grey

Today's gift is finding color amidst the grey.

If you have been following my blog, I think you can figure out what the "grey" is in our life....Rett Syndrome.

However, I and we as a family, can not let the "grey" get us down, so we are always finding color...in our journey with Rett Syndrome to brighten up our days.  Some days, the "grey" isn't Rett related at all...but life....in our every day.

For instance, today my five year old son had a very hard time listening and following directions.  At school he is an angel, at friend's houses he is an angel.....at home.....50/50!  It really upsets me when he acts like this because I know he can "act" so much better.

Here is what happened....he didn't listen, I get upset at him, then he in turn gets upset over the fact I'm upset at him....all because he just didn't listen.  We have a talk about his behavior, he is all lovey dovey, apologizes....and then ten minutes later....

IT IS THE SAME THING ALL OVER AGAIN!

And I am at my wits end.
I am tired.
My husband is in his busy time of the year so I have to be more understanding with his work schedule.
My daughter is left unattended from where she is sitting for one minute (while I try to talk to her brother) and begins to roam around the house and play games....one where she is swiper and throwing everything down...not a fun game.
My middle daughter is tired...and I really can't ask her to step up to the plate to help...but I do....and her sister tries to pull her hair.....in a playful way, however she doesn't see it like this because....she is tired.

So I tell the younger two to brush their teeth and to go to bed....there is nothing left for me to do...alone.

And then it is as if my oldest daughter realizes I need her to calm down so I can tend to her siblings for a little bit...enough to get them tucked into bed.  In this "grey" moment with her brother, she is giving me color to get through it...well....at least enough time to put him to bed!

Finally my youngest children are in bed and now I can have some breathing time before it is time to put her to bed.  She and I are relaxing on my bed watching Hannah Montana and I am reflecting on our night.  I am reflecting on how in this situation I experienced with my son (the "grey") she gives me color.

She for the most part does listen.
She isn't given too many directions she has to follow, but when they are given she usually follows through...the FIRST or SECOND time.
If she doesn't listen or follow the directions...she will NOT talk back.
She does not hide from me when she is in trouble.
She does not carry on when she is in trouble.
She hardly gets in trouble.

Would I give anything for her to act like her brother and NOT have Rett Syndrome....ABSOLUTELY!  But since I know "magic" isn't going to happen overnight, I am thankful one of my children isn't mouthy.

Nights like these are really hard for me too...especially when I go in and kiss my kids goodnight while they are sleeping.  I just look at their little faces....all innocent...and think...
how could I be upset at them?
why don't they listen all the time?
why do they have to argue with one another?
why, why, why?

I know this is part of parenting, but isn't my parenting hard enough?  Shouldn't my kids understand I need them to act at home just like they do at school?  The stresses of being a special needs mom on top of being a regular mom is emotionally and physically draining.

But it also makes me stronger emotionally, physically and spiritually.  It makes me have to figure things out a little differently.  It makes me have to find where the true colors are when there are "grey" moments in our every day.

Here are two quotes which are funny....as I also always have to find humor....

Yeah, sometimes I don't listen....I just watch your jaw go up and down

Sometimes I feel like throwing in the towel....but that would only make more laundry for me


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