I’m putting up another post today from the Flywheel group. This one is from my wife, Ginny, and she writes about our daughter Lena. Many of you know that we brought Lena home from Ukraine two years ago. In those two years, life has been in a constant state of seeking rhythm.
- We have seen friends less.
- Seen fewer movies.
- Survived on less sleep than advised.
But received more in the way of learning love than we can articulate. We don’t write about Lena often because sometimes silence is the best way to acknowledge the holy. The time will come to partake, but the grapes are pressed before the wine is served. With that said, Ginny hints at another reason we hesitate to write about Lena.
If you want to go a bit deeper on this, I did a podcast this week for special needs families.
honesty: i love her and it’s hard (ginny mooney)
she planks out, standing tall and thin and gangly in the kitchen. all her joints tighten and she screams…in a way that you’ve probably never heard a seven year old scream. tears are falling, so she is crying, but i guess it’s more of a wail. she’s blazing mad. and in the past 2 years, i’ve learned the hard way that that kind of anger can be contagious. if i don’t want to catch it, i can’t act like her. if i act like her, how can i ever teach her.
i hold her at the elbows, not too tight because i don’t want to hurt her bony arms and she does bruise easy, but just tight enough to keep her from hurting herself because she can hit her head with more force than one would think possible of a girl her size and she sometimes bites her hand. i am squatting down right in front of her torso but my eyes are cast down. i see the drips of saliva pooling between us on the floor. it’s too hard for her to swallow and scream at the same time. i keep looking down and i keep holding her arms, preventing her from hurting herself, but giving her no attention. the focus of a world-class athlete, yet just a mom and her child with autism in the kitchen. just another day, really.
i asked a simple thing of lena. one that she is capable of. she didn’t want to shut the drawer that she had opened and thrown the contents onto the floor. she’s a tall 7 year old, but a lot like an exploring toddler. at this point if i don’t make her close the drawer, she will think it is okay to not listen to me. if she doesn’t learn to listen to me, then she won’t turn around when i am telling her to not run into a wall or the street or any other danger. and if she can’t do that, then she can’t walk around independently and that sweet, playful, fragile, bad-ass, fighter daughter of mine…well, she intensely wants to be independent to say the least.
i let her know she had to shut the drawer she opened, despite her protest. still, she didn’t want to shut the drawer. she’s a very smart girl who is non-verbal and when you don’t have words, you have actions. when you can’t shout “no!” like other kids can and when you’re brain doesn’t work like other kids and when you body doesn’t do the same things as other kids…you have actions. like hitting your head.
and you have screaming.
so i keep looking at the tile below. no attention or acknowledging of her unless she stops screaming. even through hazel asking a question from the next room, ignoring the sister screams; and anders trying to console lena, completely engaged in the sister screams, i focus on the grey kitchen tile. i seem calm and cool and if you took my blood pressure it would probably be through the roof.
it’s a scene you’d really have to believe to see. i later explain to anders, help him to see more of who lena is, how she works. help him to understand all the differences. as i talk to him, i talk to myself too. it’s just another day, ya know. i don’t talk much about the day to day with lena.
and i rarely say the honest truth.
it’s really hard.
i think that for a long time, i just couldn’t come out and say that. i knew it somewhere inside to be true, but i feared saying that out loud would negate the depth of love i have for her. as if saying it meant that i didn’t like or love her or cherish every detail of her. i also care too much what people think & that sounds like a martyr and oh, i am no martyr.
but i guess somewhere along the way i have begun to glimpse what truly is…the both/and of this life with a daughter with special needs. they say multiple disabilities because well, she can be lumped into any category you’d like. cognitive, behavioral, physical, visual.
a few hours after the kitchen screaming situation, i am giving lena a bath. she now knows how to lay herself back into the tub from a sitting position then back up. she goes down and up as she pleases, and oh the joy of that independence. i wish the world could see her smile in those moments. it’s glorious. and just like the screaming and all the layers of hard that comes with it, is really just for me… in that moment in the tub, i’m the only one seeing that smile.
that smile and those long blond waves.
she is spectacular. she is so gorgeous and wonderful, i can hardly breathe when i explain her to people. she is my daughter and i get to be her mom. i don’t deserve it, i know that full well.
i also know full well that nothing can touch the depths of love i have for her.
not even the reality of how difficult it all can be.
(Ginny keeps a blog about our family at www.orbitofthemooneys.blogspot.com, but she would never tell you and she probably hopes you don’t look at it….you can see why I am in love.)
Wow. Great post Ginny. Thank you for giving a peek into your world. It is amazing to experience the pendulum swing of emotions in parenting and you articulated it beautifully. Thank you.
You two are amazing! True pictures of how the Father loves us… even when we are difficult to love, He loves is with a depth that cannot be defined. Thank you for sharing and thank you for all of the lessons that you have taught me.
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