Sunday, September 30, 2012

Small Head, Big Heart




Here we are again!  Another year, another National Microcephaly Day!  This is Anabelle's 3rd Micro Day, and the 4th year of its existence.  This year, Anabelle is micro-y-er than ever, thanks to her head growing at a smaller rate than her body.  Luckily, God took pity on her, and her full head of curly hair is finally coming in, making up for some missing real estate around the cranium.

Anabelle's First Micro Day, age 4 months

Micro Day 2011

Micro Day 2012 (Same shirt, bigger size!)

We have met so many amazing people with microcephaly along this journey.  Every year I like to introduce some of our friends, the faces of real people living with this disorder:

Maybe the most important new face this year is that of our friend, Nicolas.  Not because he is any more awesome than any of the kids featured here, but because Nicky and his family live only minutes away from us, and we see them on a regular basis.  He has many of the same doctors and therapists as Anabelle, and it is so nice to have someone to share notes with.  Plus, I am absolutely addicted to him.  He is the snuggliest little cuddle bug you will ever meet!!

         
Bean bag cuddles and smoochies!
Gorgeous Miss Nevaeh has just turned 6.  Nevaeh's micro was caused by two episodes of annoxia, once in utero and the second when she was a month old.  As a result, she also has mild cp and learning delays, but Nevaeh can walk, talk and has no trouble keeping up with her four siblings!

Nevaeh celebrating her 6th birthday
Handsome brothers Aidan and Tyler both have microcephaly as the result of an unknown genetic disorder.  After big brother Aidan was born, doctors told his parents it was a random genetic mutation, and the chance of having another child with the same disorder was extremely small.  Apparently Ty saw that as a challenge!  Both boys struggle from seizure disorder and are profoundly impaired by their conditions, and both have the most amazing smiles!
Tyler and Aidan with feisty youngest brother, Cole, who is neuro-typical

     
                                       Aidan                                                                                Tyler
  
This is Brady, one of our oldest cephaly friends.  I met his mama early on, and she has been an inspiration to me for years, raising four children while Brady has spent so much time in-patient over the past few years, as a result of complications from his microcephaly and Lennox Gastaut syndrome.  He is a little fighter, always pulls through when the doctors are shaking their heads!
Brady catching a quiet moment

Precious little Emmaline is another of our micro friends.  She walks and runs and laughs and plays.  She is currently non-verbal, but working on it!  She loves school and especially her trampoline!  Oh, and apparently has a crush on a little boy named Luke, but don't mention that in front of her daddy!

Emma and her trampoline
Now, for those of you who were here last Micro Day (http://www.anabellerose.blogspot.com/2011/09/small-is-beautiful.html), it is my heart-breaking duty to tell you that one of our friends featured last year is no longer with us.  We lost Emily this past April at the age of 8 due to complications from her microcephaly and related disorders.  Her cephaly family still misses her every day, and this is the sad reality of the life we are living in.  In many cases, microcephaly eventually becomes incompatible with life.
 Miss you so much, princess!

Anabelle sports her Emily-memorial Anabow, featuring Emily's favorite: Hello Kitty
Another year into our journey.  New friends to brighten our world, lost friends we will never forget.  Thank you for being with us all this time.  Thank you for sharing Anabelle's story and supporting her and all her friends.  The blessings of this life are more than we can name.  

2 comments:

  1. my 4 year old son Teal'c also has micro. https://www.facebook.com/pages/Prayers-for-Tealc/198620581445?ref=ts&fref=ts this is his facebook page.

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  2. I'm wearing my yellow today. Well, as close as I can get to yellow with blonde hair & fair skin. ;-)

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