Guilt

Spring Break week and beyond feeling stressed out and terribly guilty, I can't think of a single emotion.
What a useless thing guilt is.  It wastes so much time and energy.
I feel like I should be providing a three-ring circus of fun for my kids this week, that it is my responsibility that they are having a constant good time with smiles on their faces.  Their friends all seem to be on a beach or a ski hill, or on a fun family activity.  We have gone to Target, out to lunch for hot dogs, to the doctor for check ups, and to therapy.  Yep, that's it!  So now the guilt.  But then I was talking to my dear friend and she was leaving town for three days with her sister.  My other wonderful friend had her husband pick up her three kids early one night for dinner out and a movie and she sat and read.  I would never even think f asking for this or leaving town for time to myself.  And why the hell not?  I have no idea.  Instead I spend every waking and sleeping minute with my kids until I start to resent them and feel irritated every time they ask me something.  I swear I would change if I had any idea how to do it, but I don't.

This morning I just want to move slow and have them stay in jammies and play without fighting.
I was just sitting here thinking about what I did with them for Spring Break when they were smaller, and I cannot remember a single thing.  That goes for when I was younger too.  So why is it so important.  Maybe in the back of my mind I think they are going to go back to school and find out everyone had fun and they were stuck with a crabby stressed out Mom.  But really, I doubt it.

My friend told me she thinks of it as her Spring Break too.  Her break from making lunches, shuttling everyone around, getting dressed, keeping the house picked up.  That made sense.  I not only wasted their whole break but mine as well.  So I start today, the Friday before they go back to school.  I am going to take it slow, if only just today, and try and regroup.

Patty

50 Years Ago

I was sitting in therapy yesterday watching my little girl and wondering what her life would have been like if she were not born today and not born in the area where we live.  Would she be walking at all, albeit with her walker?  Would she be in a regular kindergarten class and having play dates with her friends?
Would she have a walker, and $3000 braces on her legs and night splints and therapists?

It would be so interesting to look at how her life would be, how my life would be?

I wonder if she would have been more sidelined, and if I, as her parent, would have just gone with the flow.  Would I have said "ok, you have a disability and your life will not be as big as it is now?"
Or would I have fought the tide of people saying she could not do things or was not capable.  I like to think I was that strong, but maybe I wouldn't have been.  Those people and parents that did stand up and say "no" really had to have been amazing.  They were on a trip up stream and had no idea what the future holds.

But then again, maybe I am doing that, and I am being weak for her right now.  Maybe there are cutting edge treatments and therapies I haven't thought to find and maybe she could be doing even better.  Maybe I am going with the flow and doing what everyone else does.

Am I really looking far enough outside the box for her, and do I have one more ounce of time or energy to do that while I am raising my family.  I don't really know.
Oh crap, more to feel guilty about!

Shea in her Adlei Suit

Bearing Witness to the Hard Days

Somehow even after being in this game with my little girl for 6 years, it never gets easier.  I don't mean it never gets any easier, it has its days.  Marginally it has its ebbs and flows.  Some days I have tons of hope and feel like all is right with the world, and then there are days like today.

My daughter just got through with 5 weeks of serial casting.  She had new casts applied each week for 5 weeks, constantly tweaking and moving her foot to increase her range.  It was amazing.  She could actually get her heels down when she walked as soon as they were off.  And it was fairly quick, and she did handle it with strength and never complained.  I did.  She was heavy and not super mobile.  But she was a trooper.

Then the next week we started Adlei Therapy.  It is an intensive suit made from the cosmonauts that has a series of pulleys on it.  She wears it for an hour and a half and does some really hard therapy during her time.  I watched yesterday and today as her little face just looked completely taxed and exhausted.  It was tricky for her and her little legs with all those wires looked so small and so tired.  I watch.  I bear witness.  I cheer her on.  But days like today just beat me down.  I don't want to watch my child suffer.  I don't want to be the Mom and have to cheer her on when I want to cry and sweep her up and run.  By ten am I could have collapsed I was so exhausted, and it was solely emotional.

I wish I was stronger, and more like my daughter on days like this.
But here's to faking it in the face of our children!
Patty

The Uselessness of Guilt and Why I Still Have It

When you think about useless emotions, guilt and jealousy are my top two.
I'm pretty good on the jealousy front, but guilt still knocks me out time and again.
Last Sunday my son had a hockey game bright and early on Sunday morning.  My daughter wanted to come and I really did not want to have to carry her into the ice rink and get her walker and carry all of her things-and so I told her it was not going to be fin and none of her friends were going to be there.  A white lie, and I knew it.  So on arrival, when everyone of her friends and cousins were there and they were all running around having fun, I spent the game feeling like the world's worst Mom, once again.

My daughter is going through serial casting, which means some heavy bilateral casts from the knew down.  She is not super mobile as it is, and this just makes getting her out in the snow and muck that much harder.

My friends told me that I was being silly, and that kids can't go everywhere.  But I think I pride myself in making sure she never gets left behind because of her disability.  And that she can do whatever she sets her mind to.  But then I get tired by Sunday morning of the lifting and caring, and I want o drink my coffee and watch my son and be alone a bit.

So I guess this is an area I have to work on?  What does everyone else do with their guilt and their special needs child?

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.