Tuesday, August 24, 2010

A Silent Love

She tore off a slice of pizza and nudged it onto my plate. Had I not turned around before rolling my bowling ball down the lane, I wouldn't have known. I'd never have seen the small gesture, the slight, beckoning glance that conveyed "This is for you." I'd have missed it, which is pretty much par for the course with Mackenzie. Blink your eyes and an ocean of discussion can be lost.

Ever since I was old enough to learn that there were people in the world other than myself, I've been a communicator. Fuzzy 8mm movies show me on my first birthday, party hat dangling from my ear and diapers swishing against chubby thighs, jabbering to anyone who would listen. Italian and extroverted, the give and take of verbal discourse for me is like air. The movie Castaway is on my all time list of "movies I hate," due to the sheer loneliness of it. Give me a week or two with Wilson the soccer ball as my only friend, and I'd be looking for the closest cliff from which to hurl myself.

So, on Mackenzie's 18th birthday, as the bowling ball rolled down the lane and plopped into the gutter with a thud, I jumped and laughed, asking her what she thought of Mommy's lousy bowling. There was a semi-smile, but nothing else. Silence.

Diagnosed with tuberous sclerosis complex on her first birthday, Mackenzie is moderately mentally impaired, epileptic, and exhibits autistic behaviors. She can articulate in fragments but she's not much for conversation. Don't get me wrong--she's not a quiet kid. In fact, she'll laugh at her favorite shows on Nick, tell us to move when we dare to sit in her favorite chair, or exclaim "I did it!" when she mixes pancake batter or helps us walk the dogs. To determine if she's had a good time at camp, school, a party or just about anywhere, though, we need to call people who were there. Otherwise, it may go like this:

What did you do today, sweetheart?
[Nothing.]
What was your favorite thing about today, Mackenzie?
"I'm fine."
That's nice, but what did you do today? Did you see Aaron?
"I like Sponge Bob!"
Did you make food today?
"No."
Did you do any crafts?
"Yes."
What were they?
[Silence]
Come on, sweetie. Tell me what you did.
"BOSKEEEEEEE!" (Bosco is the name of one of our dogs...somehow his name has turned into a happy Mackenzie chant, to be repeated multiple times for reasons unknown to us.)

In stressful or unusual situations, she surprises us by belting it out like a talk show host. On one particularly memorable Halloween evening, she insisted on leaving a party due to the host's frightening decorations. She stationed herself next to our car and exclaimed, "I want to go home right now. Do you hear me? Right now! It's scaring me and I SAID I am going home! Right now!" I asked myself, where the heck did that come from?

Such occasions remind me that there is much more in Mackenzie's mind than any of us can understand or comprehend. I'm reminded that my daughter is a mystery...in many ways a gift to be opened, like those Russian nesting dolls, one by one. But slowly, excruciatingly slowly, over the months and years.

So on her August 16 birthday, we did the mother/daughter thing: First, the bowling, followed by lunch, then a mani-pedi, a shopping trip to Target and finally, a visit to Chilli's for a big hot fudge sundae. Perhaps ten sentences were exchanged the whole day. I found myself reaching for my iPhone--a communication fix of any kind, be it e-mail, Twitter, Facebook, anything--but I resisted. Despite her lack of verbal discourse, she is very aware of her surroundings. She deserves the respect of an attentive mother.

It was at Target, observing a number of other moms with their college-bound 18 year olds, that I succumbed to a moment of melancholy. They were stocking up on bedding and toiletries, disagreeing on purchases, laughing over comments too soft for me to overhear, calling out to each other and comparing pants, pajamas, and sweaters. The words blurred together and became a hum of sorts; the buzz of communication.

It's then that I allowed myself a little daydream--one I've had before--of Mackenzie and me in Heaven. You see, it's my hope that some day we'll get to catch up on everything we wanted to say on Earth. Since people with tuberous sclerosis complex don't always live full lives, in my daydream she is at the foot of my bed, as an angel, while I am dying. (For some reason I think I'm going to die in a bed, but that's besides the point.) As I pass over into my new life, she is bubbling over with excitement with all the things she can't wait to tell me. We hug and laugh, and she's healthy as a horse. It's then that she spills forth about what she loved during her life on Earth, what she hated, what she thought when we did this, that or the other. I ask her if I was a good mom or did I lose my patience too often, why did God allow her to suffer so, and she holds me and tells me to forget about all that, because we are going to have a wonderful time throughout eternity. There's a lot of joy in this daydream. Bright light, too.

"Can I have it?"
Holding a computer game and a package of Play Dough, she smiled. I'm back at Target, very much alive, and very much in the here and now.
"Of course you can have it," I replied. "It's your birthday, sweetheart."
"Am I silly, Mommy?"
"You're a sweetheart, Mackenzie."

We drove home, where I told my husband all about our mother/daughter day of fun while Mackenzie opened the Play Dough. I hugged our younger girls and learned all about their days, which they more than wanted to discuss.

It was the following evening, as I was opening the refrigerator door to pull out the milk, when I heard it. "Thank you, Mom." I turned around to see Mackenzie smiling at me. "For what?" "For yesterday." "Yesterday?" "Bowling. Pizza. Nails. Thank you." I stood there holding the milk, speechless. Yes, speechless. As if to punctuate the moment to ensure I understood her, she said "I had fun."

And so did I. My daughter has taught me more in 18 years than I could ever fit into a blog post, but one thing I never anticipated, one thing I didn't consider, is the value of a relationship where few words are spoken.

The gift of a silent love.


Happy birthday to me! Holding a present at Target.






21 comments:

  1. Beautiful post, MJ!

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  2. Simply beautiful. Thank you for sharing.

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  3. I sit here with tears in my eyes reading your beautiful post as my daughter sits watching her favorite Elmo show over and over again. I get so frustrated at times and feel like there isn't much for us to do since we can't communicate much. I totally see everything you mentioned and now I can allow myself to dream.....dreams do come true I guess but not always how we envision them....sometimes a bit different!
    Thanks for sharing this!
    Big hug to you and your beautiful Mackenzie!
    Elda LaRue.....Alexa's mom (7 yrs)

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  4. I read it and had to read it again....and yes it brought tears to my eyes! It is funny how stories such as this can put our priorities back in line and where they should be. I have a disability that I did not always have so I can really relate

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  5. Oh MJ, I just loved this. I love your dream. I've been that other mom in Target. I can't imagine the silence. I'm so happy you've found ways to understand Mackenzie and know she's happy. Love you.

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  6. MaryJane,
    You are VERY good, as a writer and a mom. Loved this.
    Scott Johnson

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  7. That is a wonderful reminder to be "present" more and really tune in. Thanks for sharing!

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  8. You made me cry!! Really lovely piece of work. Thank you.

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  9. MJ-

    Thank you for posting this. It was so eloquent and so very real for so many of us. Those daydreams catch me every once in a while too, and they are so bittersweet and yet so hopeful that I ache for them to actually happen one day.

    Cindy

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  10. I knew I shouldn't have read this at work...people around me don't understand why I am crying. They can never understand. I have the same dreams about my son. He's never spoken a word in 19 years, but he can tell us that he loves us with just his eyes and his smile!

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  11. Absolutely beautiful! You are a wonderful mom and Mackenzie is lucky to have you in her life. We are all lucky to have you in our lives :)

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  12. OMG, The lump in my throat is choking me! You are a great Mom, and a great communicator.

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  13. MJ.
    Our children are the most amazing teachers. They provide us with leadership lessons for life at home, at work and everywhere in between.

    I find that we can learn the most from those most different from ourselves, so what a wonderful gift to have a silent child with a talkative parent. You have so much to teach each other.

    My daughter has sensory integration issues (adoped from Russia) and is not "touchy or affectionate" and I was called "suction cups" as a kid. You get the picture...so with my smothering to kiss and hug her and her pushing me away, I have had the opportunity to also learn a few things.

    Thanks for sharing with such eloquence.

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  14. Beautiful, Mary Jane. You're both blessed.

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  15. wow!! i always say when we get to heaven we will all be healed.i cannot wait for the day that my beautiful abi can have a real conversation with me. at this point in her life its 1 or 2 words. i sometimes feeling envious of other parents with typically developed children.i had 3 of them so i do know what it feels like. but with abi she was my last and when she was born i had all these ideas of how we would be, but GOD had a different plan.i am blessed that he choose me as her mommy. but i can relate that i feel like i have missed out on the typical 5 and 1/2 yrs we have shared :(
    thanx for sharing your beautiful story
    may GOD bless you and your family

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  16. Simply Beautiful. A reminder to take from your child what he/she can give and cherish it.
    Thank You.

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  17. Wow ! I think a lot about how many things my daughter says when she dose not speak a word ! she just recently started saying mama and nana again ! I think every parent with a non-verbal child dreams dreams of there children talking and for me it gives me the strength to keep going ! Thank you so much for sharing this ! It's wonderful !

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  18. always enjoy your blogs, cccarol

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  19. MJ,

    Your tribute to Mackenzie is beautiful beyond words, she is indeed a special gift, and you are a special mom to cherish her the way you do. Happy 19th Birthday Mackenzie! You make us all want to be better people.

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  20. Yes, thanks so much for sharing. Beautifully written. Hugs to you both, and happy birthday to your angel!

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  21. Beautiful imagery to describe a beautiful blessing...#LovedIt

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