Tuesday, October 22, 2013

If I Shared What's Really Going On In My Head ...

This post started out on Facebook:

"I found myself wondering today what people would think of me if I shared what's really going on in my head. Pretty sure my parents did a great job raising me: If you can't say anything nice, don't say anything at all.
Some days I wonder, where's the fun in THAT?"

Quoting myself.  Now that's fun.

After a busy weekend of activities for my twenty-four year old, youngest daughter who has Down syndrome, I found myself tiredworn-outexhaustedreadytodrop, a bit crabby and thinking about my life  (instead of hers). 

I know that she is the heart and soul of our family.  THE heart and soul.  Without her, my husband and I wouldn't be us.  Or would we?  Without her, the sun wouldn't shine as brightly.  Or would it?  Life would be boring.  Or maybe it wouldn't.

So as she reaches out to a milestone birthday just a little more than a month away with way more enthusiasm for it than I,  I find myself thinking.  Way.Too.Much.  I am freaking out.  Just a bit.  It's part of the maturation process, I am sure.

Where the hell did those twenty-four years go?  I swear, if one more person tells me what a great mother I am, I will weep.  For I fear that I am not.  That I never will be.  And I try every day to be.  I'll settle for good.  Great should be saved for mothers that aren't sitting with a cup of tea on that rare occasion when they have a moment to themselves, thinking, when am I going to get my life back?  

I've discovered that I don't like my friends so much anymore.  Yes, you read that correctly. It's because I am jealous.  I am jealous of their weekend plans with their husbands, sans adult children in tow.  I am jealous of their trips to the drug store, the grocery store, all on their own.  Jealous.  Of everything they can do, that I cannot.  

I am no longer the friend that you could call and say, 'hey, want to go to the mall for a while?'  Nope.  Can't do that.  I have to have someone stay with her.  Or I have to take her with me.  Don't get me wrong, I want to take her with me.  Most often I'm the one that wants to stay with her. In fact, I often prefer her company to that of others.  She's funny, witty, smart, clever, engaging, and entertaining. She doesn't have many complaints. She's a bright light in a long list of dark days.  She is an inspiration to me.  She is so much more than Down syndrome. She is also a child in a young woman's body;  it's not something you can overlook or forget.  

I yearn for an evening of appetizers and cocktails with adults.  In a bar.  With no time limit on when we get there or when we get home. (and maybe even a hangover in the morning) Without having to ask 'are you going to be home so I can go out?' or plan who will stay with her and what's on the agenda for the next morning.

I think it would be really nice if my friends took a serious look at me and just knew that sometimes I need help; that they could help me and that I would accept help. If only they would offer.  One time many years ago a friend told me she'd have my daughter stay over one Saturday night so that The Husband and I could go out for an evening or for a quick overnight stay out of town.  I was so appreciative of the offer.  But I would have appreciated it more if she'd actually, you know, followed through.  

Friends (and relatives) mean well.  They say nice things.  They tell me how great I am.  How "you do so much for her."  How she's so wonderful.  Did you know?  I am an inspiration.  Ha.

What I am is a sixty-year-old woman woman watching her friends send their children off into the adult world, dating their husbands anew, starting anew, traveling, retiring, attending college, downsizing, wintering in warmer climes.   I am happy for them.  But what about me?  

I promise, this isn't a pity party.  It is is a moment of darkness in an otherwise wonderfully funny, always interesting adventure growing up with a daughter who has Down syndrome.  We've grown together and because of that I am truly a better person than I ever could have been without her. I wouldn't want her to be any different or any other way. She has taught me so much.  She has been the inspiration of my days.  

Have I done enough for her?  Hell, I don't know.  I'll keep working on it. 

I'm sure my life will turn up again one of these days.  




2 comments:

Lisa :-] said...

First of all, I cannot express what you have done for me by posting this here. You truly are amazing, no matter what you think.

Secondly, I think maybe it might be time for you to think about, what...camp? Respite care? Not feeling guilty about setting Emily up with someone to care for her for a week, or a weekend, or a couple of days, so that you could have those few precious hours to yourself? Don't forget...they tell you on the airplane to put the mask on you own face first, so you can help others. So you could think of the "me" time as actually making yourself stronger and better for her.

I like to think if I was closer, I could find some way to help...

Cynthia said...

I have no advice, just tremendous respect. I do think Lisa has some great ideas.