What about me?

I've always thought that K would be L's keeper, her confidante, her protector, and her best friend.  K would always be there for L no matter what happened, loving her and supporting her and helping her.  But what about that day when K realizes something's just not quite right?  That day will come soon enough.  K will look to me or to Daddy and ask why L's not doing this or saying that.  This scenario isn't really that scary.  I anticipate this one.  It's the next one that frightens me to the bone. . .


I don't know why I never really thought about it before, but today, a whole new scenario hit me.  I was reading "Fragile X, Fragile Hope" when the author's older boy (typically developing) says, "Will Zach always have Fragile X?"  I almost started crying reading those 6 innocent, yet painful words.  I know that I've been there, as the parent, as the one who's supposed to love my children unconditionally.  Even as the biggest supporter of her, her biggest fan, her mommy, I've been there.  That moment when I resent her situation and her diagnosis.  There.  I said it.  There have been times I've resented the fact that my baby girl may never achieve the dreams I have for her.  The days that I hate our situation.  When I can't stand listening to her one more moment saying nonsensical "words", screeching at the top of her lungs for no reason, the days when she's almost 5 and NOT using the potty.  

But what about when K feels this way?  How do I deal with it?  She may look at me one day and say, "Will L ALWAYS be like this" or "it's not fair" when L gets away with something K would never get away with b/c L just doesn't understand what she's doing.  How can I be sure that K doesn't resent her sister or her disabilities or the time it takes her to do things?  How do I tell my youngest daughter to love her sister no matter what when I know how she feels?    And better yet, how do I always make sure that K knows she can feel open to talk to me about these things? 

Mornings

I love hearing, first thing in the morning, the sound of the girls singing songs together.  Half the time they're singing different songs and trying to sing over the other one so that she joins in the selected song.  Therefore, they both get continually louder and louder, each singing their own song, until it ends up in a fit of laughter.  I lay in bed listening to this with a smile on my face.  It's one of the best sounds on earth! (Of course, this would be better if this weren't occurring at 5:30 in the morning!)  :)

Later in the day, they will be playing in their room and all I hear is continual laughter.  I rarely check on them because this causes them to get interrupted, lose focus, and stop playing together.  I can only imagine what they're doing during these times:  tickling each other, throwing all of their clothes out of their drawers, yanking down the drapes, pulling the mattress off K's bed (she's still in a toddler bed), etc.  The only reason I can assume these things is because we have to work together later to clean up the aftermath.  Heck, maybe that's NOT what they're doing.  Maybe the closet monster gets jealous and does it for them and they're just laughing at him . . .

I enjoy the moments they play together so well.  Luckily, these moments outnumber the moments they fight.  The greatest joy in the world is seeing your children's smiling, laughing faces as they give each other hugs and plan their next devilish moves against me, together!  :)

The Bad

I can not begin to explain the pain I feel when I go to pick L up from school and I have to watch as kid after kid comes walking out of the doors, sees their parent, jumps into their arms, and leaves happily to go about their merry days.  Meanwhile, I sit on the bench, the two teachers that are able to come out looking at me with pity, as the third teacher is somewhere within the confines of the building trying in vain to get L to come out.  It could be that she is in the classroom, unable to will herself in to the hallway.  It could be that she is in the cafeteria, unwilling to walk towards the exit.  Or maybe, she starts walking towards the door, sees me, turns around and runs or throws herself on the ground, refusing to continue forward.  And when she finally does acknowledge me, she screams "I want daddy!" or "I don't know you" or "I don't see my mamma!".  She really knows how to make someone feel loved. 

Today, I had to physically pick her up and carry her to the car.  She was THAT adamant about not going with me or leaving school.  When I begin walking with her, her whole body melts in to mine and she becomes limp noodle.  Finally, I get her in to the car, buckled in to her seat, and proceed to back up. That's when the REAL fun begins!

The drive from school to daycare lasts around 20 minutes.  It feels more like 20 hours when you're listening to a 4 1/2 year old little girl screaming at the top of her lungs that she "never want[s] to see you again!" and she is "NOT going to day care!".  So, I do the logical thing and blast the radio to drown her out.  I'm telling you, I WILL be deaf by the time she's 6.

How can any person keep their sanity when this is the awesomeness they get to endure on a daily basis?  Friends are so incredibly helpful.  Friends that have children with special needs knock sense back in to me, especially when those friends have it so much harder than I do.  My husband, bless his soul, is probably the only reason I have not completely gone batshit crazy.  I thank God for him every day, as he seems to be the one person that can always calm down a lost-in-transit child. 

Fast forward the 20 minutes, take L inside to daycare and see K.  K runs up to me and gives me the biggest hug imaginable.  It's almost like she KNOWS.  I immediately feel my blood pressure drop about 60 points and I am able to walk out the doors without crying and with the faintest smile on my face.

Tomorrow is another day and a fresh start.  Let's see what it brings us :)

My Title

Coming up with a title to my blog was easy.  When my daughter was not speaking at an appropriate age, we began learning sign language.  At first, we just bought books, but found that to be more difficult than we anticipated.  Our speech therapist recommended Signing Time (www.signingtime.com) videos.  The results were immediate and phenomenal!  All of a sudden, our daughter was communicating her wants and needs to us and was so enthusiastic about it all!  We credit Rachel Coleman, the face of Signing Time, for giving us a gift.


One of the most moving songs in the video series is called "The Good".  I immediately thought of our hopes and dreams for our daughter.  When we got our diagnosis of Fragile X, it all vanished.  The future looked grim and bleak.  As time went on, we started seeing improvements, and our hope slowly started growing. 

And so begins our journey, a family filled with new hope and new dreams, as we look forward in anticipation of The Good!

The Good
It was you and me and the whole world right before us
I couldn’t wait to start
I saw you and dreams just like everyone before us
We thought we knew what we got

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
No, maybe we won’t find easy
But, baby, we’ve found the good!

It was you and me and a new world right before us
I was so scared to start
I saw you and dreams just like everyone before us
But how did they move so far?

And then one day I thought it slipped away
And I looked to my hands to hold you
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
Maybe we won’t find easy
But, baby, we’ve found the good!