New Years Day 2011

Ok, the New Year has officially started, and I have a long list of goals swimming around in my head.  Most are writing based, and career and personal goals, and lots are financial.  Those I am determined to accomplish in the first few focused weeks of this year.

But there are family based ones, as well, and those seem to be based mostly on guilt.  I hate guilt.

Not that anyone actually “likes” guilt, or thrives on it, I’m sure.  But it overwhelms me when I let myself think about my kids.  And what a useless and draining emotion it is.  It truly adds nothing to my life, nothing useful to my children’s lives, yet there it is.  With me when I close my eyes at night, with me when I’m in the shower, with me when I sit at my desk and write.  Shooing them away so I can concentrate for 15 minutes, and listening to their pleas for attention in the background.

Being the parent to a child with a physical disability seems to only add to my guilt.  Am I doing enough for her, and I facilitating enough for her, making sure she participates in everything her brother and sister are doing?  And am I doing enough for them?

The answer is always a resounding “NO.”  Although everyone around me is always marveling at what I get my little girl involved in, and how many fun things she gets to do.  I always think that they just don’t see the day to day, the times when she is not doing everything every other kid is.  She plays so well sometimes quietly, that I let myself enjoy the peace.  The not carrying her or helping her walk or dance.  But then I see it in her eyes, watching her brother and sister flipping around jumping on a bed or dancing crazy to their new music, and she wants me to help her.  But there is laundry and dishes, and everything in the way.

Oh well, maybe that is the resolution of the hour.  Not feeling guilt, and giving each of them a little bit of time.  A little attention to what they want to do, be it the computer game, the dancing, the reading, and then move on.  The laundry should not ever cause guilt, it is not a growing, developing mind or self-esteem of a child.  Let it wait, I will tell myself.  If you only have so much focus, use it for what is truly important.  Forming a life, growing a child.

Ok, here is to 2011 and a new focus.  Short, sweet and centered.

Special Grandparent's Article In Chicago Special Parent Spring 2011

http://www.chicagoparent.com/magazines/special-parent/2011-spring/grandparents-to-special-needs-children-pulled-in-two-directions

First Day of Kindergarten

The Grand Plan

The Grand Plan:
I came up with this idea this summer, thinking about my special needs daughter and how we managed from day to day raising her with her challenges, and making a "normal" life for our other children.  Days with a handicaped child, with any special needs child, are up and down.  Some minutes you are rejoicing in how wonderful and amazing they are and reveling in their small accomplishments.  Those moments when I hear myself thinking " I've got this, no problem at all."  But other moments you are on the downward swing of a really fast pendulum.  My thoughts go to "How is this ever going to be ok, how can I change my reality?" 

But at least the swing keeps happening, and the sunny side will soon show itself.
So how do I get through this, I ask myself, day to day, with the fears the questions, the exhaustion on spirit and body?  I get through because of my freinds and my wonderful family.

My family cheers along with me every step of my children's lives, and they are there for me and my husband when we don't even realize we need them.  Grandmas, Grandpa, Aunts, Uncles and wonderfully special big and little cousins.

I have also had the incredible good fortune to have formed a circle of friends who I would be nothing without.  I have my preschool girls, my special needs freinds, and my new school friends.  I also have a group of women who I have carried with me throughout my entire life.  They know me inside and out, and seem to love me in spite of it.  I feel as if this tight circle around me will be there until the end - that these women will be My Friends for life, without question.

I tend to be a talker and farely freindly.  I always have this desire to find out "How do you do it?"  Like the person standing next to me will have an insight that I have missed, and it will better my life and my childrens.  And you know what, they do.  I have learned from people I have stood next to through countless therapies about gymnastics PT, horseback riding therapy and where to go and with what therapist, medications, clinical trials, and how to get a $3000 adaptive bike.  Everyone has their own piece of knowledge and they really do like to share.

I feel as if it is my duty in life, my mission I guess, to pay it forward.  To pass on information I get that helps me, helps my family, helps my daughter...to other parents facing the trials of raising a special person and their siblings.

So that is what I have set out to do with this blog.  My hope, is that other people will follow suit.  That people from everywhere, all over the world, will write me with their advice or ideas, their stories of "How they do it."  I would love to be the conduit to share these stories, to make life better for not only my child but for special needs kids all over the place.

So please, share with me your ideas.  What has worked for you, what has worked for your child, or your family.  It is a very small circle of us, and we can help and support each other. 
I am new to the world of blogging, and I welcome advice, criticisms (gently) and laughs at all times.
Patty