Friday, January 13, 2012

Fear of the what if's

One of the scariest things about raising a child with special needs is the big looming monster of the future that scares the willies out of me.  Yes, the present can be difficult at times but the future... that is what grounds me most of the time.  It's the what if's... usually I refuse to think of those things.  I try my best to live for today and celebrate the past.  But, some weeks the what if's are inescapable.

This week I've been bombarded by what if's.  This past week, I've meet other mothers who share my same fears for the start of school.  I've talked within my support group about the what if's of planning for Kate's adulthood.  I've read blogs on the what if's of medical downturns; of kids who probably won't make it to see their 3rd birthday.  The what if's of parents who can't get the medical care that their child deserves.  I've listened to teenagers call each other names that I know will someday hurt my child.  It seems I can't escape it this week.  It's one of the downfalls of reaching out to others in the special needs world.  Most of the time you hear the joys of success stories and feel blessed to meet the families who beat the odds.  You learn from them.  But, sometimes weeks like this come along and it brings fear.  Those what if's surface and all of a sudden you feel troubled by the world around you and fearful of the future.

Part of this feeling comes from the fact that Kate has her first IEP coming up.  For those of you who aren't familiar with education... an IEP is her personalized education plan for her start to preschool.  It will determine her therapies, the support she'll get throughout the school day and it will set the tone for her entry to school.  I have complete faith that it will turn out fine.  I have been nothing short of impressed by the educators and therapists that we have had the pleasure of meeting and working with over the past 3 years.  But, there's that what if.  There are those stories of parents having to fight for their children who don't get what they need and it makes me a nervous wreck. 

Kate is going to start preschool in a month and a half.  My little Kate who can barely walk without stumbling, who talks baby talk and who is the size of an 18 month old.  How will she survive?  I know that she'll probably thrive there.  I know that she'll love it and they will love her but I'm fearful of so many what if's that come when a child who is very delayed has to try and keep up in the big, bad world without me and her Daddy. 

When my first daughter started preschool I was nothing but excited for her.  Ally is bright and was practically ready for Kindergarten at the time.  She was writing her letters at 3.  She knew all her colors and numbers up to 30.  She could make patterns and tell you the life cycle of a butterfly.  How is Kate supposed to compete with that? 
Yesterday I was going through all Ally's old artwork and found a preschool poem that her teacher gave me on her first day of school.  I remember reading it 3 years ago and laughing, thinking "why would parents worry about their kid going to preschool?". Well, now I understand.  I'm worried. 

People call me strong.  People say that I handle stress well.  For the most part, I'd agree, but I have my moments. As a mother of a child with special needs, you can't be immune to the feeling of fear forever.  You have to succumb to it at times.  So, as I enter a long weekend off work, my goal is  to live in the moment.  I'm going to remove myself from the what if's and focus on the joy of my daughter for who she is today.  It's healthy to remove yourself from the realities of the world and just be happy for who you're with and what you have.  My hope is that the beauty of today will calm the fear of the tomorrow.


  1. You are an inspiration, Sarah...
    My sister has an autistic granddaughter, who is 9 years old, and the older sister of a 5 year old, who is progressing at regular school. Margo has her struggles, but the best thing for her is her loving, accepting parents, and especially grandparents. Love is the key, and you SURE have that. It's heart-wrenching to read about your fears. I think they are perfectly normal, but your love will make YOU, your DAUGHTER, and your whole family stronger. You are inspiring to others, your blog is wonderful !

  2. also, Sarah, you can follow Margo's progress at my sister's blog.....

  3. Sarah!! This is the best post I have read in ages. You put into words exactly how I feel. God bless you girl!!!!

  4. I came here from project 52. I dont know the details of your daughters issues but can totally relate to this feeling My own daughter is now 8 and has special needs. She couldnt talk when she started pre school, knew no-one there and it scared me to death. But she loved it, it was so good for her and she has come on amazingly since then. She constantly amazes me with what she has achieved I hope your experiences will be just as positive Good luck Claire