Saturday, November 12, 2011

Giving Thanks II

Picking up where I left off 6 days ago: one more week of thanks...

Nov 7. Hema and Hawa
            For those of you who do not know, "Hema" and "Hawa" are the names Elyse calls my parents.  They were her first attempts at saying "Grandma" and "Grandpa", and so far have stuck.  And my gratitude for having them nearby and in our daily lives is really not a special needs thing, at all.  I have a lot of friends who do not have any parents or in-laws nearby to help them, and I have no idea how they do it.  My parents pick Elyse up from school several days a week so that I can work, take her to activities that I would not be able to get her to, as they would not work for Anabelle, and in general pick up any slack as necessary.  Forget single parenting, I can't even figure out how a TWO parent family raises kids on their own!  I need a whole team!

Nov 8. Anabelle's Eyelashes
             I assume most of you reading this blog are familiar with the world-famous, extra-long eyelashes that Anabelle possesses.  A little secret about them is that, while they are unnaturally long on their own, the fact that she has microcephaly actually enhances the effect, since her head is undersized.  And while they are extremely beautiful to look at, that is not the reason I am including them on this list.  I have found that they are also a good ice breaker.  As you would expect, we get a lot of stares and looksies when we take Anabelle out.  I know this really bothers some of my special needs friends, but it really never bothered me.  I get it.  People are just curious, they wonder about the story behind what they are seeing.  I have found, though, that Anabelle's eyelashes give them an opening to start a conversation.  "Oh my God, look at those eyelashes!", usually followed by, "How old is she?".  Then, if I have a minute to engage in conversation, I will gently turn it towards what I know they REALLY want to ask, which is, "What is wrong with her?"  Any time is a good time to educate someone who is genuinely interested.  So, I am thankful that Anabelle has such a lovely physical attribute that draws people to her.

Nov 9. Orchids
            Beautiful flowers of the tropics!  They bring so much color to my life!  Hardy, yet temperamental.  I can handle something that only needs my attention once a week.  Never can manage to make them bloom again, though, so it makes it easy for my husband to score points at any time by bringing me a new one!  Am planning a large tattoo on my back one day, based on the photo below, taken at Longwood's orchid show, when I have a few extra bucks...

Nov 10. Squeezie Applesauce
            Silly, yes.  But those of you who know my older daughter know what a ridiculously picky eater she is.  I am amazed she has survived this long on chicken nuggets and grilled cheese.  She refuses to eat any vegetables whatsoever, so the rule is that she has to at least eat a fruit with lunch and dinner (and a daily multi-vitamin).  Problem is, she isn't all that crazy about fruit either.  It has been a constant battle in our house twice a day for the past two years, at least.  It makes me miserable.  And I was also concerned, because this year she stays through lunch at preschool, and I wasn't sure she would EVER eat the fruit I packed.  Enter squeezie applesauce.  A genius with a four-year-old's mind thought of a way to make applesauce fun by putting it in a pouch that kids can just squeeze into their mouths.  Wasn't sure if it was going to win her over, but IT DID!!  Now, anytime I am not in the mood for a battle, I just whip out the squeezie applesauce and she slurps it right up.  (On a related note: also thankful for Go-gurt)

Nov 11. A Smile
              Having a non-verbal child is hard.  Any of you who are parents know this from the first 1-2 years of life, when your baby is crying, but cannot tell you why.  It is heart-breaking and frustrating.  With Anabelle, it goes even further: she cannot talk, she cannot point to where it hurts, and she cannot cry.  That's right.  Anabelle has never cried.  No whimpering, no wailing, no moaning.  She can make sound, but it is not connected to communication.  She mostly "talks" to hear herself, we think.  And she will make noise if she hears a lot of people talking around her, or hears Elyse singing.  But she doesn't really make much noise when something is bothering her.  In fact, there is pretty much just ONE thing that Anabelle does that communicates emotion: she smiles.  And BOY does she smile!!  A face-lighting, room-lifting smile!  A pure, innocent, completely joyful smile!  Anyone who sees it just has to laugh!  But her smile is good for so much more.  How do I know when something is not right with her?  When she DOESN'T smile.  See, there are certain things you can do with her that are guaranteed to illicit a smile: brushing her cheek, petting her hair, Elyse singing to her, certain musical toys.  If she does not smile in response to one of these stimuli, then something else is bothering her, and we know to start looking deeper for other symptoms.  How grateful I am for that little smile.  It lets me know that she is enjoying her life, and allows us to make sure she continues to do so.

First smile, at 4 months of age

In case you didn't notice the eyelashes above...

Loving her sensory playmat 

Showing off her new wheelchair stroller

Sissy kissies 

With best bug, glowworm.  Always loves to hear him sing

Nov. 12.  Holiday Decorations
                Or, more specifically, one particular holiday decoration: a fiber optic snowflake.  Sold at Ikea for $5, a battery-operated, white ball of fiber optic strands has turned out to be the best toy Anabelle has ever had.  Just weeks after being told that she was blind to all but the brightest of lights, we caught her looking at this lighted toy and smiling.  Two weeks later, she discovered that she liked the sensation of the fiber optic threads brushing against her hand, and this led to the first incident of purposeful movement that we could all (myself, Brian, nurse, therapists) conclusively agree on.  There have been movements in the past that we thought may be something, but nothing as clear as reaching for this ball.  In the video, you will notice that her head is turned AWAY from the ball as she touches it.  This is actually very typical of visually impaired children, they turn away from the stimulus so that they can concentrate all of their attention on the hand.  I am so thankful for the incredible joy and hope that this little toy has brought into our lives!

Stay tuned for: books, naptime and Stonehenge (intrigued??)

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