Wednesday, January 16, 2013

Evaluation time...

Isabelle is almost 20 months (on the 23rd) and now there are days that pass before Down Syndrome even crosses my mind.  When she was born, it was all I thought about.  Now... I just see my little girl- Isabelle.  Until... evaluation time.
We had her PT evaluation this past week.  This is a requirement by the State for her to be enrolled in the Early Steps program.  One of the requirements is to show the age range at which she is functioning at this time.  These are done every six months and every six months, I go into a major funk for a few days.  There is something about seeing these completed evaluations on paper- it sucks the wind out of my sail.   I will give myself major pep talks over the next few days which involve focusing on Isabelle's strengths and her personality so I know I will be ok because she will be ok.
I choose to spend my time focusing on Isabelle's strengths and the day to day happenings.  If I look too far into the future or compare Isabelle to her peers, that is when fear and sadness can happen.  These evaluations definitely don't sugar coat anything and it isn't easy seeing where my baby measures up to other typical children.  I know she is behind.  If I choose to be- I could be reminded of this on a daily basis.  I see it when I pick her up from daycare, when she is around her cousins, kids at church or in the store.   I could see the differences everywhere I look.  But I choose to see the similarities.  Isabelle is a baby like every other baby.  Her needs and wants are the same.  She laughs, loves and cries just like everyone else. She just has a little something extra.  That little something extra makes her have to work so much harder than other kids just to do those everyday tasks- like crawling, walking and talking.
                             

She will still conquer all the things - walking, crawling, jumping- that other kids can do but it will just come a little slower for her and she will have to work 100 times harder.  But Sister is a fighter.  She fought to be born, she fought to take her first breathe and she fought during her OHS and she won.    
Plus... who could stay sad for long looking at this beautiful face?!?
I have asked her ST to give me a heads up before her evaluation so I can try and prepare myself.  Lets see if that works.

1 comment:

fight4faithfamilyandcystinosis said...

Oh, Tonya. Your writing is beautiful and heart-felt. I feel where you are...not exactly but trust me when I say I've felt many of your exact feelings. God has shown me (and I know He will you, too) that first of all...none of us "measure up." We should be measuring up to God's standards and sadly we all fall short. Secondly, and it rather reiterates my first point....Isabelle does not have a scale measure by man....her measuring stick is in her Heavenly Father's hands. I used to bawl my eyes out when I would see Joel next to his cousin that is only 5 weeks ahead. My heart hurt...it was heavy for days. And like you...Dr's appointments STILL make me ill. God graciously showed me and continues to show and remind me that HE has a plan. A very special plan for Joel and it has NOTHING (or actually everything) to do with a manmade chart! You hang in there, YOU'RE a fighter and so is your beautiful, smart, talented daughter.