"...just a setting on the dryer"

The tiniest breeze brings the sorrow.

It arrives uninvited, unexpected, and doesn't even bother to knock. It settles in the creases, comfortable in this new home. But it is not the only guest. It lodges with laughter, fear, joy, guilt, acceptance, frustration, and gratitude.

It can be a rowdy crew.

Especially when they play tug of war or flip a moment, just like that, with the expert precision of an old time pizza chef twirly dough.

                                   **************************************

I sit on the ground between the kitchen and the living room reading A Different Kind of Perfect, a book of writings by parents of kids with special needs. In one of the essays, by Sharon Perera, an older cousin, twenty-something, dreams of an extended trip in Australia for Christmas. When he asks his nine year old cousin what she would want, she responds, "I'd wish that Joshie was normal like me."

I can't see the page through my sudden tears. I put the book down.

Mama? I hear from a small voice by my feet. And I look at my child, who's eyes rarely meet mine, as he stares right at me.  He stills the constant roaming, the unfocused jiggle of his eyes--one of the sources of my sadness--and says my name again, Mama?

Then the flip.

Elias lays his head down on my lap. Letting me know, for the first time ever in this way, that he understands.

I cry even harder.

But I am no longer sad.

                                   **************************************

As much as I cycle through the chronic grief of lost expectations, Elias does not stay stuck in one place. He does not spin but expands. And without the weight of perfection. Why does it burden me so? God knows I am far from perfect and my abilities have been shaped by time.

I wanted to be a Broadway actress as a child. I knew every line of every song in Annie, Chorus Line, and Grease. I made my parents sit through countless recitals. I sang and danced along with my records as they listened and applauded even though I can't carry a tune. I didn't inherit a single musical gene and though our family can dance, We Can Not Sing. Not me. NOT AT  ALL. I also can't spell or do math. I have mild scoliosis, bad varicose veins, and two wombs each half the normal size. 

We all have imperfections, limitations, and disabilities. I mean we do, don't we? Nod your head. Say yes.

I have spent so much wasted time trying to pretend that I don't, trying to be perfect. This is why the visible disabilities of others always scared me.

No false sense of protection from the collective fear of being exposed.

                                   **************************************
Elias stands at the front door with his walker. Walk out-tide. Walk Out-tide, he repeats. A new request. And though it is in the single digits (yes, in freakin' MARCH!!!!!) and the snow is unevenly shoveled on our front walk, we step outside into the increasing daylight.

And it doesn't matter. Not the walker. Not the uneven ground. Not the biting wind...

..Its just an imperfect Mama and her no-longer-a-baby boy.

So tell me, how imperfect are you? The short list. (I didn't even scratch the surface.) Just tell me one thing you can't do--so the perfectionist in me who believes I SHOULD be able to give my child a life without limitations can remember there is no such thing.

And that, as Angie so aptly wrote in a comment yesterday: "normal" is just a setting on the dryer.

And we all need assistance somewhere.

Comments

[JenniferB]

I can do 8 loads of laundry in a day, but I can't ever remember to take the last load out of the dryer. I can't patiently listen to my children tell me about their day without interrupting too much. I am almost 38 and have a prolapsed uterus and will have to have a hysterectomy next friday. I have a congenital heart defect, that was surgically repaired. My "girls" do not match each other. Most of the time I can remember many things really well, and then suddenly, I don't remember. I am overly sensitive in not always the best way. If we didn't all have our "humanity" issues -- like these -- we would be a dull, boring society and no one would ever find the joy in a sunrise, a baby's laugh, the first time your darling snuggles you to cheer you up. I don't always love my imperfections, but I am beginning to love myself anyway.

[Deidre]

You've been on a roll with the beautiful and thought provoking posts. I can't believe how big Elias is getting and he looks like he's standing up taller with his walker. YES, (nodding head enthusiastically) we all have disabilities. Anyways, here are just a few:
I can't spell, I can't grow anything to save my life, I am a horrible money manager, I'm fat, I can't play any type of sport that requires hand/foot eye coordination, I can't ski, can't skate, can't skate board, can't do cartwheels, I can't dance unless I'm drunk (even then I still can't dance, but I do anyways) I'm an introvert trying to be an extrovert, I have paralyzing phobias of heights, spiders, relationships, and being the victim of some huge catastrophe. I think I have undiagnosed adult ADD. I'm judgmental, and I ALWAYS put my foot in my mouth, always. I could go on and on. I guess we are all imperfect trying to pretend to be perfect in an imperfect world. Love to you and the men!

[jill]

the short list?!?!??? well, for starters I can't cook, were talking burnt toast here. Nor can I keep a clean house,spell, sing, keep a regular workout shecule, draw, paint, hang a picture on the wall, tile....we are reminded often of all the things we can't do...but EVERYDAY we are forced to look at the things we can and do do well. Like love our children.

[RAS]

Let's see...I am a good 80 pounds too big. And I'm lazy (the two may be related). Given the choice between using M's naptime to clean my house or surf the web, I'd say 60% of the time, I surf. I do manage to keep the "public areas" of my house in reasonable shape, but my bedroom looks like burglars tossed the place. I never remember to fold my laundry -- I just take clothes out of the wrinkled mess as I need them. Given the chance, I'd live on cheetos, mini eggs, and ice cream.

And there are days when I fear I'm not a good mother. Or at least, that I cannot possibly hope to be the mother that my kid deserves. But I keep working on it.

[amy]

Is there a short list?

I am forever not paying bills on time. I lose things constantly because I am unorganized and my house is cluttered. I either talk to little or too much. I can be really mean and say hurtful things to those I love - usually when I am hurting and want someone to feel as bad as I do. I drink too much coffee, watch too much tv and don't exercise enough.

[Kris H.]

My list could go on forever, but I am going to focus on the one that is bugging me the most at this moment...

I am so directionally declined it isn't even funny. Hubby says I could get lost in my own backyard...and some days he is probably right.

This can be a major challenge with two kids who always have somewhere new they need to be.

And God forbid I mapquest something and have one of the roads be closed!!! That will reduce me to tears in a second!

I am very fortunate that I have a husband who is very patient and understanding. If I have even one days notice of somewhere new I need to go, he will take me on a "dry run" the night before so that I have some idea of where I need to go. But even then I have been known to get lost!

[Kirsty]

I am impatient and intolerant with my children (and hate myself endlessly for my nagging and shouting), I totally failed at breastfeeding (no milk AT ALL) and still feel wretched even though my youngest is almost 3, I'm useless at every sport ever invented, I'm no good at money management, I'm cripplingly shy, I still feel utter despair when I think of my first daughter (who died in utero at 24 weeks for no known reason), even though it was almost 7 years ago. I feel unattractive and uninteresting, and cry way too much at all kinds of dumb things.
Christy, Elias is a beautiful little boy. He may be "different", but he's still perfect in his own way. You are lucky to have such a happy, positive, beautiful child.

[Sonja]

I'm actually fighting back tears - real ones, not just sniffles.
Here's my list:
I can't get anywhere on time. I can't accept help even from well-meaning people. When something makes me cry, I will be on the verge of tears for the rest of the day. I can't seem to find a job that gives me satisfaction.

[Beth_C]

Where to begin? I'm always comparing myself to others. I tend to be very impatient with my kids. My teeth are crooked even though I wore braces for two years and a retainer for 4 years. They are reverting back to their old position just like my orthodontist said they would. I have multiple sclerosis. I had a miscarriage in November and am trying to accept the fact that I may not be able to get pregnant again.

On the plus side, my kids and my husband don't seem to notice or care about any of my imperfections. Love is blind!

Thanks for another thought provoking post!

[Kyla]

Can't cook to save my life. When Josh works late, he calls in an order for pizza so we don't starve.
I can't understand HOW things work. I understand that they DO work, but when you get into the how of it my brain hurts and I can't make it come together.
I can't reverse directions. If I get a map/directions to a destination and then try to flip them to get back home, I always end up lost. Always.
I know there are more...but there's a short list. :)

Look at Elias go!!! He is so handsome, and he's standing GREAT with his walker!!

[Erin]

I can't get pregnant without assistance, and I can't carry a pregnancy to term -- my cervix is extremely screwed up. I could not produce enough milk to sustain even a 3 pound baby in the NICU, even though I took every conceivable medicine, herb, and used every pumping procedure/schedule/trick. I cannot maintain normal mental health without antidepresants, probably for the rest of my life.

Finally, I can't decide on the next step for building our family -- adoption? surrogacy? only have one child?

BUT, BUT, BUT -- I have an amazing family, I am a good listener and friend, I think I am a good mother, and I am extremely empathetic.

There you go . . .

[Bon]

great analogy, Christy...drawn from a great observation by Angie.

what i can't do...

*can't catch a ball unless it's thrown at me very very gently, as one would to a two-year old.
*can't shed this huge chip on my shoulder, no matter how i seem to try.
*can't carry a child to term.
*can't sing...you and i should get together and put on a tone-deaf rendition of Annie, since my mother and grandmother were subjected to the same torture, back in my childhood.

you're right, y'know. we're culturally conditioned to see some disabilities as "normal" and some not. an exercise like this would be great to do in schools and workplaces to encourage inclusivity.

[Melissa]

I never comment, but am a long time reader, so I'll give you my short list. 1. I was born with Strabismus in both eyes and my right one still turns in a lot. My eyelid on that eye is lazy too and I've learned to live with the stupid questions, "did you know that your eyes are crossed?" Um yes, I think I do. I also have no depth perception in my left eye, so I tend to drive in the left lane, because changing lanes scares the shit out of me. 2. I suck at all sports even though I come from an athletic family. I mean like really suck. 3. I spell check all of my comments and they are still probably wrong, becuase I am such a horrible speller. 4. I am directionally challenged, even though I've lived in the same area my whole life. 5. I cannot function without coffee. Seriously, I am a mean woman without it. 6. My kids think homemade food means going to the restaurant as opposed to the take out we eat every night. I don't cook. 7. I don't tell anyone that my daughter is a genius (or all the problems that entails), because I can't even explain it too myself and it scares me so much that I can't handle their questions and accusations that I am a liar. And for the sake of this....I am not a lier...she's five and is literally smarter than me...and see this is even harder...she's got a 165 IQ. It terrifies me, so I pretend it doesn't exist, outside of her school. And I'm sure that seems weird to you, but I don't know what to do with her half the time and the other half the time I m so amazed at her, but i wonder how I can keep her stimulated for the next 13 years of school and if not, what in the hell does it mean for her.

Oh and I haven't managed to give up reading blogs even though I took mine down in January and swore to everyone I had no time to keep doing this. And this is just my short list, good thing you didn't ask for it all. :)

Also, since I'm here...you're amazing. And that little precious boy is amazing and I love seeing how he's grown in the last year and I love those beautiful big blue eyes. I can't even begin to imagine what you're going through, but the other day you said something that has stuck with me. You talked about the things you can't do with Elias, kayaking, rock climbing....and I just want to tell you, you should put all of it and more back on your list. My mom has worked with kids who had disabilities to do all of those things. Yes it has to be done differently than you would think, but most of it can be done. Give it time, he's a strong boy, I'm sure he'll continue to surprise you.

[angie]

"Normal is just a setting on the dryer" is one of my favorite sayings....and it is SO true. There are so many things that I can't do....OR that make me different. I cannot ever be the organized person that I "think" that I should be, I cannot use chop sticks, I have freakishly straight red unmaneageable red hair, I'm horrible at math, and I do not know what to do when there is tension in a room....I just freeze:). Also, I question every single day if I am the parent that my child with special needs....needs. Am I doing the right things for her? Am I being the proper advocate for her? I know that no child comes with an instruction manual....but our kids are so unique that it is difficult to even find someone else who has gone through similar circumstances....therefore it is uncharted water. I sometimes just wish for brief glimpses into "similar"...not "normal....just "similar.

[Mary]

Hmmm, things I can't do. I can't shuffle cards--even though I've had six year olds patiently show me how. I'm terrified to climb a ladder, even though as a single parent, it sure would be helpful. At nearly 40, I still have to concentrate to tell left from right or read a face clock. I cannot add and subtract accurately. Even though I understand the broad concepts behind most math, my results are rarely precise.

But yeah, as your other commenters have said, there are things I do pretty well too and I try to remember to take joy in them.

And I wanted to say, as others have--sure looks like Elias is doing great with his walker--makes me smile to see him.

[Christy]

I am so deeply touched by everything you all shared and by our collective imperfect humanity.

I honestly can identify with something on everyone's list from leaving clothes in the dryer to putting my foot in my mouth to burning toast to a burglarized bedroom to drinking excess coffee to losing things to having to do a "dry run" with directions to being impatient with Elias to being horrible with money to crying easily and then being on the verge of tears for the rest of the day to comparing myself to others like how white and perfect some folks teeth are compared to mine to spell checking comments to using my fingers instead of chopsticks to not knowing what to do with tension in the room to having to pretend to write STILL to know my left from my right and to always questioning if i am doing enough for my special needs son....whew.

And instead of sitting here flattened by this pile of all that I cant do i feel like the weight of perfectionism has been lifted a little since i am in such good company.

Thank you my wonderfully imperfect readers who are holding me up in ways that you do not even know.

And yes, Elias is getting better with his walker, standing straighter, and even choosing to use it more.

[jess]

Imperfections? You, my perfect friend, want to know the imperfections of your imperfect friend? I can't even decide where to begin -- which is clearly the imperfection that can top the list at this moment.
Another amazing post. I miss you so much.

[paige]

Eesh. Where to start?

I am much too frank and "earthy" for my workplace (a Christian school). I can say the words "penis", "vagina","sex", "foreplay", etc. with a straight face, good eye contact and nary a twitch. I dislike, very intensely, euphemisms and nicknames for body parts.

I can understand written directions for an action (like directions or putting something together) only very rarely. If I watch someone do...whatever, I can figure it out immediately. Or if I have drawings and diagrams to look at. My best Tai Chi teacher, like my best riding coaches, was able to just place my body in correct positions. I have an excellent kinesthetic awareness and good muscle memory. But I suck at reading directions.

I am a fanatic about having the last word.

I am cynical and sarcastic and I have to work very hard to keep a filter on my thoughts and words so that I don't end up hurting someone I care about.

I don't hold grudges, but I get my feelings hurt very easily by people who's opinions matter to me.

My worst fault? I find it nearly impossible to ask for help.

[Patricia]

I can be nice to perfect strangers, but not my husband. I have bone spurs on my spine and even though I'm only 25, it hurts so bad I just want to lie in bed all day. I have trouble controlling my temper. Friday, I yelled at a group of guys at my university because they were being rude. I feel like a failure bc I only nursed my 2nd daughter for 6 mths. I also let my girls "cry it out" as babies and we went from being avid non-spankers to spankers in the last year. We are now non-spankers again, but I feel rotten for the time I didn't follow my heart in parenting and listened to other people's opinions of how I should parent. Feel better yet? :)

[Robin]

How come you always make me ache to stop what I am doing, gather my kids and snuggle with them, do nothing but love them?

[Becki]

I'm self-centered. Too often I think about my own boy's special needs and how hard they make life for me, if only because I'm hurting for him and his struggles, including the struggles I know are yet to come. I'm envious of mom to whose kids things come easily and naturally. I get impatient. I'm ungrateful. And my son? Wants to empty his WHOLE piggy bank because his school is having a fund drive for a children's hospital. In spite of his most imperfect mother, he may yet turn out okay.

[Heather]

I'm a perfectionist that is paralyzed by my inability to do everything perfectly. If I can't do it the way I want it done, I just can't (literally) do it. I have RA, a bipolar preteen daughter, two kids that are lost in the middle, and a young son with a rare brain disorder. I've only married 3 men (only!) and yet had no luck with any of them. I'm addicted to crime shows and novels. I'm overweight and yet I refuse to give up my Pepsi and chocolate.
Great pictures, kiddo!