Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, May 29, 2014

Music to my ears

While we wait for Meagan's shunt surgery, we have been moving right along with her therapies and daily life of course.  As I mentioned before we have been really working with her on weight bearing.  We want her legs to get stronger and now that we have her AFOs, we are able to work on that with a lot more success.  Without her AFOs, Meagan's legs are basically like a wet noodle - she cannot bear weight on her feet and her legs are very weak and wobbly.  With her AFOs, her lower leg gets total support and structure, so we can work with her on the sensation of standing and also get some pressure through her feet.... which is important so her feet grow as well. (She's still in an infant 2/3!).  She cracks me up when we work on standing, however, because of her expressions.  Sometimes she is not too happy or feels off balance because she isn't using her arms to help hold herself up - and I can understand that must feel very strange! One of her favorite things to do when I'm holding her in a standing position is to just lean her head over and rest it on whatever is closest - whether it be the couch, ottoman, chair, or just hanging it in the air.  Drama queen already I tell you!

Such drama - even with my arms wrapped around her waist 
for support...and this is what she does. 

Another area we are really encouraging is music.  As a musician/music teacher/performer myself, of course I absolutely believe in the importance of music for children from a very young age as a supplement to their learning and a vital part of their development.  However, in Meagan's case in particular, I see music as absolutely essential to her growth.  We have always sung to Meagan from infancy - when we weren't sure if she could hear, we would sing... and see her tilt her head and be interested.  When we weren't sure of her vision, we would sing to her....and see her eyes begin to track the toy or item we had been holding.  When we weren't sure of her speech, we would sing to her or play music for her - and she would suddenly be babbling and yelling right along with it.  From early on, I could tell that somehow music was speaking to her - in ways that typical speech and other developmental tools weren't reaching her.  Somehow her brain was connecting to music and producing skills that according to her scans, should be absolutely impossible to obtain.

She often wiggles her way towards me when I practice and lays there.

These active engagements in music have been very helpful in her development - most especially in her speech and expression.  If you remember this time last year, she was trying to make sounds, but we really had no speech as she approached 2.  I could tell in her eyes she was trying to communicate - and we had noise from her, but no "language" (as we know it) was emerging.  As she grew I would sing her name "Meagan Theresa" in a little sing songy phrase.  I remember one day when her usual babbling didn't occur - but instead I heard her mimic the exact melody I sang using her name.  So I sang her name to her, and she would repeat back the melody.  Before I knew it, a few months later, when I would sing her name, I would hear back, in the same sing songy melody "Megn Teeeesa."  It was then I started to really latch on to the idea of purposefully putting music in to Meagan's daily struggle with speech.

I started to sing everything to her.  What we were doing.  Where we were going.  Words. ABCs. Silly phrases.  Even things like "yes" and "no" and "go bed."  Everything was to a melody and last Fall we saw her speech start to emerge.  Several of her doctors were amazed, as the speech part of her brain was quite damaged - but one of them said to me... "this is going to sound crazy... but I think she is accessing speech through the music center of her brain."  I just smiled.  It didn't sound crazy to me at all!

Meagan playing piano her way...sans arms

So this whole year Meagan has been immersed in music whenever we can.  She is constantly sitting around when I am teaching flute lessons, or practicing for a symphony concert.  Likewise she hears her sisters practice their violin or flute and soaks in everything. She seems to enjoy the violin more than flute (seriously!?? How is that possible!? :) ).... but I think it has to do with pitch.  I think the pitch of the violin is much more comfortable for her head (sorry Megs).  Whenever Reilly practices, we typically see this:

Not totally offended though - she at least mimics playing the flute! :)

Meagan also enjoys Irish music immensely! We ask her if she wants to go see Irish dance and her little body gets extremely stiff with her arms flapping and her legs just absolutely filled with excitement they could burst and she gets a huge smile typically whispering "off you go! off you go!"  She is absolutely inundated with music from every angle and it has helped her so much.

How Meagan Irish dances

I am very thankful that we have found a "love" of Meagan's.  We ask our other kids all the time about their favorite things, or activities, or colors.... but then sometimes that can get overlooked for Meagan because she won't show us in the typical way what she likes.  You can ask her what her favorite color is and she may look at you, or say something random, or smile, or stare, or blurt out a color at random if she caught you saying the word 'color.'  Her attentiveness and ability to process is up and down and this is where we have found music extremely helpful.  Personally I really attribute music to her success in speech this year.  I happened to notice the window that worked for her - to look into her brain and reach her where we hadn't been able to before, and for that I'm very thankful.  It is these little victories with kids like Meagan that make the biggest smiles happen.  My goal for her is first and foremost happiness - and I'm glad I have found music helps contribute to making her happy because she certainly deserves it.  And that's music to my ears.

Meagan's rendition of "Do You Wanna Build A Snowman?"


  1. Molly, this is amazing to read!! I love stories like this. Music is SO powerful. I LOVE the pictures of Meagan watching Riley practice. Those are so cute!!

    1. Kerri - that series of her watching Reilly is seriously one of my favorite set of pictures! I just loved watching her get more and more interested... so sweet.