Thursday, June 28, 2012

the decapitated doll

In a corner of our entryway lies a small plastic barbie-style tinkerbell doll, who happens to be decapitated.  In the course of an average day, I pass and notice this doll easily five to ten times, and every day, for some reason, I leave it there.  Now, I am not a stellar housekeeper, but I have my standards, and typically picking up toys at the end of the day and relocating them all to the playroom is one of them.  Owen is pretty good about picking up after himself when asked, though since he's related to Daniel, I suspect we'll always be working on tidiness...  :)  Evelyn, given her physical limitations, is pretty neat and tidy herself; and I suspect even if she were more physically able she would still be neat as a pin.  There are little things that just have to get done, like wiping down the kitchen counter tops and keeping dirty dishes washed or in the dishwasher, sweeping every day (too much dog and cat hair this time of year!) and spot cleaning bathrooms...blah blah blah.  I guess what I'm saying is that we don't live in a hovel, and I like for things to be in their place - but something keeps stopping me from picking up this poor decapitated doll.

And here's what I think it is: defiance.  defeat.   celebration?  In my life, and I suspect in many other mom's lives, there is this quiet pressure to be perfect.  Our homes should look like the pages of a pottery barn magazine, our children should be polite, well behaved and occasionally adorably precocious.  Our selves should be fit and strong of mind, body and spirit.  And our to-do lists should be checked off at the end of each day, or week.  Does anyone's life fit that description?  Mine certainly doesn't.  I was talking with another mom a couple of days ago; she is new to the world of special needs and one thing I wanted to tell her, because I have to tell myself over and over again is this:  You can never be everything.  You can never be enough.  The spiritual reason is that only God can complete us, only God is perfect and true and always there, always enough.  The simple truth is that we just can't do it all.  We can try, but if we look closely enough, we'll see that we fail every time.  There will always be a headless barbie doll in a corner somewhere; be it an actual, physical doll, or a long unused toilet in need of cleaning, a friendship in need of mending or a diet that needs starting.

People often tell Daniel and I that we are doing a great job with Evelyn.  We appreciate it, and we mostly believe it.  After all, we both work very hard, giving love, time, energy and money to keep her as healthy, happy and independent as possible.  But the truth is that it only takes a second to think of lots of ways that we've failed her.  Whether its not having her wear her AFOs (ankle-foot orthotics) as frequently as prescribed, missing a dose of medication now and then, or not speaking up when someone says something disparaging about 'children like ours' - we mess up.  The bottom line is that we can't help it; we aren't perfect - and that is such a nice thing to admit and accept.  It gives us permission (and Evelyn definitely benefits) to invite other people to share in her care, to share in her life experience.  Which means that having doctors, nurses, therapists, teachers, family, and friends - who all help us care for, teach and love Evelyn - is okay and actually a wonderful thing.  It gives me room to be Owen's mommy too, and to cook dinner and play with my children, to sweep up piles of dog hair every day and to paint my toenails when I finish this blog post.  It gives Daniel room to snuggle his daughter every night, wrestle with Owen before bed, go to work and do a very good job without worrying about us - it gives us breathing room.  The weight of perfection, especially in relation to our children (which is where it matters most) is off of our shoulders.

I avoid picking up that doll because to me it represents that pressure we feel to be perfect; I'm defying the pottery barn barometer and accepting defeat.  I'm also celebrating that defeat, because I know I'm a pretty good mommy/wife/person - and I'll always try to be better at all of those things - but I'm not setting the bar at perfection, and thank goodness for that.

So, the next time you're at our house, in addition to loving our little people, you're more than welcome to toss the headless barbie doll into the toy box where she belongs, because I'm not planning on picking her up anytime soon.  :)

Monday, June 4, 2012

on a rainy day

I have to apologize for not writing as frequently as I did earlier this spring.  We've had a lot of good days, and a lot of relaxing days.  These quiet, happy times in our life provide me with a lot of gratitude; particularly when compared with the tougher times we've faced this year.  In our community of friends who have a child with Aicardi Syndrome lives have been lost, and there have been many hospitalizations.  Each time another child struggles, we share in that pain, just a little, and sometimes a lot.  One beautiful girl in particular, Ava, went to heaven recently, just missing her sixth birthday.  I saw a lot of her spirit in Evelyn, and really loved her mom's outlook on life and parenting.  When Ava passed, there just wasn't anything I could blog about that didn't seem absurd in the face of such a huge loss.

It is still hard to think of what to write, because I feel somehow that it has to be worthy - if, hopefully many many years from now, I read this post to remember a time with Evelyn, will I be disappointed to have written about something trivial?  I think that's why I haven't had much to say - there isn't much I can say that compares with who my daughter really is, deep inside.  I can't begin to touch that, even if I try.  So, as with life, we will just keep living, and I will try to keep writing - because in enjoying the little things, I hope we are honoring the big things.

On that note, today we went to the library.  Don't take your two year old to the library.  Enough said.

Seriously though, it was a fun day.  We played, we watched movies, Evelyn had her toenails painted, Owen practiced gymnastics in his crib, mommy took a few tylenol....  :)

This weekend we are headed to a lovely house on the lake for a long weekend of peace and quiet and fishing from the dock in the backyard.  Owen will probably contract poison ivy, and Daniel will probably have to be pried from the hot tub every night.  Evelyn and I are plotting some outlet shopping...  I think it is going to be fun.

What we've been up to lately...