Handicapable!

Over at Kelly's Korner, she's having a Show Us Your Life.  This week is Special Needs Families.  I think it's kind of neat.  I believe that sometime "Special needs" is socially viewed as a negative thing.  I personally have never thought that way, in my life.  In fact until High school, I always thought I would be a special needs teacher.  Even in high school, I volunteered at Badger Camp.

For those coming over from Kelly's Korner, let me introduce you to the most wonderful 2 year old! 

  She was born at 30 weeks with obvious facial deformities.  She has a Chromosomal 6 deletion q25.1-q25.2.  It's an extremely small deletion but one that has filled out world with many uncertainties.  Rylee has met all of her milestones, just at her own pace.  She rolled at 11 months, sat at 15 months, crawled at 19 months, walked at 27 months.  Cognitively, she is able to hold and use a pencil or crayon, use eating utensils, play with most toys, turn pages in a book, clap, wave and blow kisses.  From a speech stand point, she can't speak much.  She will mimic more than anything and she can sign a few words.  She becomes frustrated and agitated easily when she is trying to communicate with us because we simply can not understand what she is trying to convey to us. She is very far behind the growth curve.  She is currently 18 pounds, 6 oz and 29 inches long.  Her health is relatively well right now.  She suffers from Hydrocephalus so she has  VP shunt to help drain her excess CSF, Chronic Kidney, lung and heart diseases, Heart murmur, ROP, Failure to thrive, hypotonia, possible growth hormone deficiency, sleep apnea, global developmental delays and new to her long list of medical imperfections are Seizures.

Rylee is not perfect to the average person.  She has lots of medical issues, continuous physical, occupational and speech therapies and a never ending list of doctors visits.  But to me, she is just who she was meant to be.  She's special!   It breaks my heart that nurses, blood pressure cuffs, iv's and those metal hospital cribs are everyday things to her.  There are many many times that I get frustrated and overwhelmed by all the information and schedules but I wouldn't change it for a second.  I love that little girl more than life itself.  I just can't imagine her any other way.  I read this poem a few months ago and it really touched my heart! If you are a parent of a special needs child, always remember that God sends children with special needs to special parents because he knows that they will be well cared for.

HEAVEN'S VERY SPECIAL CHILD
by Edna Massimilla 
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”