Sunday, October 20, 2013

Sugar Coated....NOT!

One thing I want people to understand is that first and foremost, we have a deep love of our daughter, Aubrey....and all of them.  But I don't want to sugar coat our lives, especially during October. 
{sometimes you just want to strap them to a rocket and send them back to the planet they came from}
 Parenting ANY child is hard work.  Having a child with Down syndrome IS hard work.  All the rewards far outweigh the work, but it is work. 
{outside the Finding Nemo ride....which she hated}
Contrary to the myth that kids with Ds are always happy....she's not and she makes it known.  "No" followed by "Away" and that was it.  It is sometimes more difficult and challenging than it is with our typical children.  It can be frustrating to figure her out.  Frustrating to understand her.  She thinks and works differently than our other girls.  It's like being a first time parent all over again, sometimes.

{a runner}
I've got these challenges fresh in my mind, because some weeks are better than other.  Last week we spent time with family and friends in Florida at Disney.  Traveling is not easy.  I have to always think worst case scenario with our Aubrey.  Do I have all the meds we could possibly need?  Do I have all the right phone numbers if we don't?  Where is the closest hospital?

{sometimes you just HAVE to put your kids in a cage to keep your sanity}
Figuring out Aubrey has been challenging.  Her speech delays make it difficult to understand her wants and needs sometimes.  We often drive overnights, and this trip was no exception, but she fussed all night.  And once there, she couldn't get comfortable to nap....until we figured out that she likes to tuck her self up like a pretzel to sleep!  Yes that is her foot by her head.  And on the way home we flipped her car seat to rear facing and tucked her legs up by putting a pillow there....and she hardly made a peep.
She hated so many things last week.  ALL rides.  Fireworks.  Shows.  You name it.  It didn't make for enjoyment for her, or us, or the people near us.  It was hard.  Someone had to sit out all the time or hold a crying Aubrey.
{Kissing McQueen goodbye -- what you don't see is her next, climbing into Mater's mouth to kiss him goodbye}
One of the only things she loved?  Meeting the characters!  Spent most of our day at Hollywood Studios standing in line to take her picture with the characters.  The joy she had being with them was unbelievable....and it made all the other stuff....forgotten.
{I love you James P. Sullivan|
Her only requirement was she had to hold their hand during the photo.  Small request.  Hard to finally figure out.
{brushing teeth with her buddy -- please disregard the mess that is 7 people in one hotel room and the beer next to Aubrey -- obviously that was mine after a long day!}
It's so easy to forget that she is FIVE years old.  She's the same size as her sister who is TWO.  She has similar speech as her sister.  She has similar mannerisms.  She's challenging like a two year old sometimes.  But she isn't two.  She is five and finding a balance between treating her like a big girl and accepting her limitations, is hard work.

Most days, we find that balance.  Most days we figure her out.  Most days are filled with joy.  But I wanted you to be sure to know that there are plenty of days where that balance isn't there and we can't figure her out and we are just too frustrated to try anymore.  

So we turn to our faith in God and our trust that he is our guide and strength.  We pray and we turn to friends and family.  We ask her teachers and doctors countless questions.  

We aren't doing this alone.  She has a "village" helping us raise her.  They help us face those challenges head on and figure them out.

Psalm 46:1
God is our refuge and strength, an ever present help in trouble.

1 comment:

  1. We feel so blessed to be part of her "village", even from a distance! :) LOVE these photos and the captions. Fun to reminisce (already) and giggle. :)


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