Gotta love that smile!  If your child has hydranencephaly this group, The Global Hydranecephaly Foundation, is full of hope, support, and understanding.   http://www.hydranencephalyfoundation.org/

Tis' the Season

Thanksgiving is over!  It’s officially Christmas time.  It is not the stores, radio, or television programming that sets the time for me.  It is a family tradition carried from childhood.  The day after Thanksgiving may be black Friday for others but for me it is the first day of playing Christmas music.  I love it!  I also love sappy Christmas movies.  One or the other will be playing in the background for the next month. 

Other things about Christmas are not so easy or so fun.  It marks the turning of weather which always meant Maddie’s ability to go outside changed, too.  With her body temperature issues trips outside were limited.  It also meant needing to get Christmas presents.  The two are tied together for me.  I always wanted to find things to help Maddie enjoy the long few months ahead.  So her gifts always included warm clothes and a pile of books.  That wasn’t enough for me.  I wanted to get her something that she would really love; something that did something amazing.

One year I found a sled with a curved back brace support in an L.L. Bean catalogue.  I showed it to one of the nurses who agreed it was a great idea.  So I paid a whopping amount and purchases a bunch of hand warmers to help keep her warm.  I was so excited!  Maddie not so much.  But then she had never ridden a sled and I had spent have my childhood flying down the hill in front of the courthouse in our small town.  I just knew once she did it she would love it.

So a few days after Christmas, on a sort of warm day I got Maddie ready.  Out we went with the dog jumping around us.  I set Maddie on the blanket lined sled.  She looked at me like I had just set her in cold bath water.  I started pulling her on her sled across the yard.  I didn’t even get to the drive way before she started screaming.  About the only time Maddie would cry at that age was when her g or j-tube got pulled out.  And this was not crying, this was screaming!  The dog looked at me like I torturing the poor child and starts barking at me.  It was clear our little sledding adventure was done.  So much for the expensive gift that was supposed to bring my child joy.

Over the years I learned a few things.  Even if I enjoyed something as a child, it did not mean Maddie would.  Maddie didn’t like the sled or dolls or Silly Putty.  She liked switch toys, music I didn’t know, and fingernail polish.  I think the gift that she loved the most was the year a friend and I turned her ceiling into a fairy garden.  But the things she loved the most about Christmas were the music and the sappy movies.

Now that I have confessed what a poor judge of presents for my own child I was, I offer an article about buying gifts for children with significant specials needs.  It might be helpful to you or to others wanting to get fun gifts. 

"Please, No Stuffed Animals: Buying Gifts for Children with Significant Special Needs" http://creativespirit63.hubpages.com/_21w151xherrsj/hub/Please-No-Stuffed-Animals-Buying-Gifts-for-Children-with-Significant-Special-Needs#comment-11113752