Celebrations

Lately I've felt like everywhere I go I can't escape complaining and arguing.  Whether it's politics or work stress or just trying to fit everything into one day, differences in opinion surround us and it's so easy to become exhausted by it all.  Yesterday I was sitting at my work computer feeling a little stressed over all the grading I need to do and decided to escape a bit by changing my computer background.  I ended up chosing this picture that I recently took of Katie at a neighborhood park.

I immediately felt better.  Katie, whether she's with me in person or starring on a picture on my computer screen, is an instant mood lifter.  Her attitude is contagious.  She is pure love and joy.  She is sweet, polite and happy (99% of the time). 

When I took this photo, she wouldn't sit still for a posed picture, but that's ok because I actually prefer photos of my babies being themselves.  What strikes me the most about this picture is how far Katie has come.  When I look at it my heart swells with pride over the fact that she can run.  Just look at her face.  You can see the pure joy that she is having doing it, too!  Katie is overall delayed in pretty much every area of development and seeing her accomplish each little milestone that most families overlook in their own children, well it really puts your priorities into perspective.  I remember waiting over 6 months just for a smile.  I look back and remember feeling pain to see younger cousins pass her up with walking, talking, drawing, pretty much everything.  It's hard at times to see your child struggle but amazing things happen over time.  I've watched her never give up.  I've seen her want to do what the other kids are doing and today I'm seeing her acheive those milestones.  I can't be more proud of the fact that she is beginning to do these things and more.  She continues to make me proud day after day.

Kate teaches me every day what is most important in life.  It's not who won an election.  It's not if you get your paper work done on time or if your house looks perfect or if you have the latest technology... it's your family, your kids, your health.  Katie has blessed me with one of the greatest gifts I never asked for.  The daily reminder of what is important... the love of life.

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.