Friday, January 17, 2014


Every day, I wonder, "what is up with her!?"  I have found that I have to walk L through every single step of her day.  "Put your panties on. Put your pants on. Put your socks on. Left foot. Right foot. Put your shirt on." I used to be able to say, "get dressed".  What happened!?

What happened?  Really? I have to ask that question, knowing everything that has happened in the past several months?  Come on, mom. Use your noggin.

Our lives have been in the state of constant transitions here lately.  My mom moved in with us back in May.  Around that same time, my husband got orders for deployment to the desert, effective date of October.  There were to be many changes to go through.  And then some ....

My sister needed some assistance with her office until she could get a vacant position filled. My mom went up there to help, and just a few weeks before she was scheduled to be back home with us, they were involved in a terrible accident.  So, while Daddy was going back and forth to training, we were preparing to have Oma home, only to be delayed in that expected outcome.

If you know anything about children, especially children with Fragile X, you know how much preparation goes in to anything. You have to mark calendars, put up schedules, talk with them, do countdowns.  All of these preparations came to a halt and were reversed, which makes for a not-easy discussion with your FX'er.  She didn't understand.  But the calendar said Oma would be home today! Why is Oma not home?

We had to take an unplanned trip to Abilene to see my sister and my mom.  We come home, and Daddy leaves for 2 weeks of training.  Daddy comes home for a few weeks, then he leaves for his deployment.  Oma comes home in a wheelchair then leaves for follow-up appointments then comes home, etc.

Meanwhile, during all of this back and forth commotion, L changed day cares, started back to school, started swimming lessons, had to change swimming coaches, and is about to begin taking drum lessons.

How could I possibly wonder why L is having such a difficult time?  Her life is nothing BUT transitions!!! She has, in reality, handled them all very well, all things considered.  Her meltdowns are more frequent and more intense.  She has gotten physically aggressive with me at times.  But, things could be so much worse.

I am proud of my girls.  While their lives are ever changing, they have stuck together and remained positive.  They support each other and encourage each other.  I just wish I could make it all easier for them. And I wish I could make their lives more stable, with less transitions.

In the meantime, however, we will continue to build schedules and verbally cue L to put on her socks. Left sock. Right sock. Good job.

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