People sometime comment that we have it difficult because Lizzie is in a wheelchair, because she has a feeding tube, or because she’s still in diapers.  But let me tell you something.  The area of Lizzie’s disability that is the hardest for me has nothing to do with physical limitations or scheduled feedings or diapers.  It’s her lack of words that is the hardest.  Her inability to tell me her hopes and fears and dreams.  As a lover of books and writing, words are my greatest tool and my best weapon.  So the biggest challenge for me has always been that my daughter doesn’t have any.  And if I could change only one thing about Miss Lizzie’s situation, it wouldn’t be to make her walk or eat or even use the bathroom.  It would be to give her a voice and billions of words to express herself.

Miss Lizzie has been non-verbal since birth.  With the exception of “all done” and “Mama” she can’t really say anything.  Some of the challenges this has raised in communicating with her are probably obvious.  She can’t tell me if she’s hungry, or if she needs to be changed, and she can’t tell me where something hurts.  You learn to work on schedules and you learn to look for non-verbal clues.  A schedule can tell you when you need to feed her next and when she should be about due to be changed.  Crying and sudden changes in temperament can tell you that something is wrong or something hurts, but only an investigation will tell you where.  These are skills you hone over the years and they can be useful, but they can’t tell you everything.

Anyone who meets her will tell you Lizzie is a very happy girl and that she loves music and singing.  She has the physical skills of a toddler.  She can sit unassisted.  She can pull herself up to stand, not for long periods, but she can do it.  She can coast on furniture and walk with a walker.  She can reach over her railings to get toys, curtains, and anything outside of the bed that you don’t want her to have.  I’m ashamed to say that most of the time I think of her as a very large toddler.  Mostly for safety reasons.  But It’s easy to forget that your child is still progressing in other ways, when they’ve slowed almost to a crawl in some of their major developmental milestones.

Lizzie got her period last summer, and that should have been a screaming indicator of her growing up.  But I just took it in stride and thought, “Well, it’s new, but it’s just another problem we’ll deal with and keep rolling.”  Even that didn’t wake me up to the fact that I am not raising, as one of my friend’s says, a forever baby.  I am raising a young lady.  And this may be hard to see behind the diaper changes and formula feedings, but she is growing up.  Which brings me to my recent discovery.

My little girl has discovered boy bands.  See, in our house, most of the music is chosen by us as parents, or by her twelve-year-old brother.  Boy bands do not exist inside these walls.  Her brother hasn’t allowed it.  But, when I went to Lizzie’s open house this week, I made an interesting discovery.  Lizzie loves One Direction.  I had no idea.  I felt like a heel.  How could I not know my daughter had a favorite band?  And not only that, my daughter has a favorite boy in the band. Apparently her heart belongs to Liam.

This took me back to my days of boy bands and boy band crushes, and I realized something.  I’m missing out on a lot more than just basic communication.  I’m missing out on gossip and crushes and knowing what her interests are.  I mean, obviously if I can see she likes something, I know, but if I’m not there how do I find out?  How do I even know what her interests are if she finds them at school or with a friend?  I left that open house with a cold feeling in my heart.  I felt like I didn’t know my daughter at all.  Somewhere along the way I forgot that even though she may have physical challenges, she’s still a nine-year-old girl.  

For years, Michael has been telling me that this is lame or that cartoon is so babyish that it drives him crazy.  It never occurred to me that Lizzie might think so to.  She may like the things that nine-year-old girls like.  I need to make a better effort to explore what those things are so she doesn’t miss out and so I don’t drive her crazy making her watch baby shows and listen to the same baby songs over and over.  I mean there might be some she likes, but I need to make a better effort to check in with her on what she does and doesn’t like.

This morning, during her tube feeding, I pulled out my phone and played a YouTube video.  “That’s what makes you beautiful,” by One Direction.  Do you know that this was the first morning that Lizzie held absolutely still during a gravity feed.  And that she wasn’t making me constantly readjust her tube while she did the Curly Shuffle and climbed the walls of her bed.  She laid there completely quiet, a feat for Miss Lizzie for sure, and stared wide-eyed at the little screen.  Occasionally looking at me as if to say, “Mom, how did you know?”

I love my girl.  I’m making a conscious effort to be more aware of what is going on around us and in the world of nine-year-old girls.  And for now I’m going to enjoy getting to know her better.  🙂

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