Sunday, May 4, 2014

A Dream for My Daughter With Down Syndrome

by The Stir Bloggers from The Stir:
I've debated posting this letter a million times. Mostly because I know I have readers who will not get this. Some readers won't because they love me and my family and Lily so much...they just don't ever want us to hurt. So to prevent that hurt -- or stop it -- they will say things like, "please just accept Lily for who she is. Just give her time, and trust that she is who God made her to be."
Some readers won't get this letter, because... they simply can't relate. As understanding as they might be, they will never ever know how it feels be the parent of a child with special needs. And believe me when I say, I don't blame them for not being able to relate. I'm in a club that I didn't choose to be in myself, although I wouldn't bargain my way out of it if I could.
I've learned too much, loved too much, grown in ways I didn't know I needed to, discovered little rooms...vast my heart that I never knew existed since having Lily. I cannot imagine, and I don'twant to ever imagine, life without Lily; this letter has absolutely nothing to do with a lack of love for her or a desire for her to be someone else. She's my Lily, and I truly believe that quote at the top of my blog...the one that says there was no mistake here. I believe it with all my heart.
But there are some days when I dream....
  Dearest Lily,

It's Wednesday afternoon and you are sleeping soundly in my bedroom. I can hear the purring of the sound machine, set to rain, as I type. Your older brother Josiah, newly married, came over to take all of your siblings to the park to play basketball. Mackenzie is running errands and Daddy is working on his sermon for tonight. And I just woke up from a dream...

I have this recurring dream, Lily, and I just have to write to you about it, in hopes of making it stop. I don't know why it comes, or why I always have it during afternoon naps. I never seem to have this dream at night; only when I doze off briefly with your brother Jackson, or with you tucked close by my side does it arrive. And I don't know how the same dream could play itself out so many times in my head, always with the same recurring theme and subsequent feeling when I wake up. You'd think that five or six or seventeen times was the limit for one dream...but it never seems to want to give up. It's always there, tucked away in a quiet and hidden corner of my mind ...obviously... ready to replay itself when I least expect it.
It always begins innocently with some scene from our family life: a meal around the dinner table, a vacation or an afternoon spent outside. In the dream your brothers and sisters are laughing and talking, and life seems so very normal. Everyone is as they are in real life...Tyler is his teenage self, his voice changing and his mannerisms those of a boy turning into a young man. Jonathan smiles and shares a joke with me, and Caleb puts in his two cents as well. Noah is grinning, his mouth a mixture of baby teeth and grown-up ones, his eyes twinkling blue. Abbi and Jackson are talking or playing, and Mackenzie and Jason and Josiah take their turns in the dream as well.

But when I turn to talk to you or play with you, there is a shift. A subtle change, and I don't recognize it at first- because it seems so very normal. So natural, because the Lily I'm talking to and playing with is exactly like my Lily right now -- only without Down syndrome.
She smiles exactly as you do, crinkles her nose and tilts her head to the side, and her beautiful blue eyes turn to half moons as she does. She turns her head to laugh at something one of her brothers says, and that same little belly laugh erupts from her lips, just as it does from yours every day. Her honey colored hair is pulled tightly into two matching pigtails, and little wisps have fallen out beneath, and nothing about this Lily would make me think she's an imposter....but she is.
Because when this Lily opens her mouth to talk, there is no hesitation or pause. Someone asks her what she wants, and although her voice has the same familiar tone and quality of my every-day-Lily, this one answers clearly and distinctly. I ask her a question again, not sure how it's possible that my Lily can voice her desires so clearly, and again this phantom Lily gives a reply, her words just as precise and intelligible as any of her siblings.

And yet in spite of this new-found skill, nobody in the dream seems impressed or astonished at what is happening before our eyes- this Lily talks and responds and takes part in our conversations as easily and naturally as any toddler would...her sentences are still simple, and her phrasing not quite right, typical of the words any two year old might use. But she speaks, and when she does, I feel like a whole new world has opened up between me and my daughter, and I hold her and look into her eyes and ask her dozens of questions, not believing this could be happening.
This Lily tells me what her sister is doing, points to her brother and calls him by name, smiles at her daddy and says I love you, reaches her hands out for me and calls me mama...this Lily is everything you are today...without the Down syndrome.

 She is gentle and sweet, coy and engaging, she is feisty and demanding, and she is just as loving and playful and beautiful as my real-life Lily. But she has no limits. Because when I set her down to play, her movements are fluid and sure, she runs and climbs and plays without any work or hesitation, her gait is sure, her motor skills organized and perfect, and just as when she opened her mouth to speak, I am amazed at what she can do. And yet no one around me is astonished, no one questions how these changes came to be.

And so I ask her the question that's been tugging at my lips this whole dream, because I want to know, really must know-   who are you?

"I'm Lily!" she laughs, and there isn't anyone in the world who could convince me she isn't.
And that's when I wake up.

And Lily, I wish I could say that there isn't part of me left behind in that dream, a tiny, maybe hidden piece of a mama's heart and hope for her daughter, that so desperately wishes for things to be different. Because no matter how much I love you, dearest Lily, no matter how fierce and protective that love, and no matter how proud and accepting and confident I am, and no matter how valuable and cherished and completely beautiful you are -- the real-life Lily, the one who really does have Down syndrome -- there is a dream that won't go away.

And there are people who just won't ever get this, Lily. Not because they don't want to, and not because they don't try. But until you've walked a mile in my shoes.... or been in this particular dream...
So here we are, sweetest Lily, and I know that in spite of my plea for people to recognize that do know you are a gift and that I wouldn't wish away the Down syndrome if I could because of all that I've learned and all the friendships and beauty your life has opened up to me, I know there will still be some who don't understand....what it means to be the mama of a child with special needs.

We hurt when our children struggle.

We cry when nobody is looking, because we're supposed to be strong.

We are fiercely protective of our children, because we don't want anybody to see them as different, and God help the person who makes us think they are.

We want acceptance for our kids, want them to be seen as they should- as perfect, as beautiful, as capable, as the person they are- the person, because in spite of our children's challenges, they are every bit as human and as worthy of life as any child....

And yet there are times when we dream.

There are times when we see a "typical" child alongside our chromosomally enhanced children, and reality shows us that there is more to a syndrome than a name.

There are moments when our friends or loved ones use words that make us cringe, when even physicians or professionals or those who should know better use stereotypes or outdated phrases to describe our children, and we have to decide whether to be bitter or better.

There are instances in this journey called special needs, temporary roadblocks so to speak, when we wonder if we're really cut out for this job, this hide of a rhinoceros and heart of a child role that we're required to play. We're not supermoms, and we don't consider ourselves saints for just loving our children - to imply that we are, hurts --  because loving our kids is as easy as breathing.

And yet at times we do feel stretched to saintly status and really wish that we could go back to "earthly" motherhood....those days when we didn't have to question everything we did, wondering if we're doing enough, getting our kids the help they need, exploring every option for giving them the tools they need to do well in life, and then wondering again just how much is too much. Back to the time when parenting - in comparison to this - was almost effortless, when we didn't watch milestones come and go and ask ourselves, "is it something I'm doing wrong? Or not doing at all? Or is this just because of special needs?" Oh, the luxury to know that those milestones are truly coming, and never have to question if our children will get there....and if they don't, to wonder if it was because of their diagnosis, or because we just weren't trying hard enough.

Because that little girl, darling Lily? The one who visits me in my dreams, looking hauntingly like you? She taunts me with her almond eyed smile, her perfect articulation and smooth movements and sharp mind. She mocks me with her charming grin, the tilt of her head and the surety in her voice as she answers my simple question: Who are you ?? 

And mostly she just makes me wonder: am I doing enough?

Am I trying enough, working enough, praying enough, investing enough, reading enough, asking enough questions, seeking enough help, saying enough, doing enough, being enough?

But that's when I stop and say ---

I cannot do this job, cannot be your mama, cannot live this way, wondering if I'm enough.

I have to trust that not only did God give me you, but that He gave you me, and that apparently He believed I was up for this...that I was enough.

I might drop the ball at times, dearest Lily, might miss something at times, might not read enough or try enough or ask enough...but I do love you more that life itself, and at the end of the day I choose to believe that is enough.

And if it takes a million dreams to make me wrestle through that question, so be it, because I've decided today that my love for you is....

Love always, 

Your Mama oxoxox

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