Friday, June 7, 2013

Finding it Hard to Believe

He's standing on a chair in order to reach the gluten free instant oatmeal he bought just last week. His lunch is packed, along with a big bag of chips for the party they will have after the class talent show. And then, he will ride the bus home,for the last time. Graduation was last year, but it wasn't high school's end. This was the year of work study, of living half in the high school life and half in his grown up life. It's time now, time for Jared to stand out from under the umbrella of yellow school bus, classroom, and cafeteria. He's ready, I think. He carefully measures the water for his oatmeal and presses buttons for a minute of cooking time.  And I watch, not sure what to feel. He joins the water with the oatmeal and pours himself some grape juice. This young man,  once my smiling toothless baby boy is on the brink of his new life. THIS is the feeling of transition, I'm guessing.  The last year told me it was a changing time, but THIS is the real thing...he stirs his oatmeal and sits to eat. I've done nothing for him this morning.  And years ago, I thought I would have to do everything for him....he eats. The bus is coming soon.

Wednesday, May 1, 2013

Maggie's Poem

      She Walks in Beauty
    She walks in beauty, like the night
        Of cloudless climes and starry skies;
    And all that's best of dark and bright
        Meet in her aspect and her eyes:
    Thus mellowed to that tender light
        Which heaven to gaudy day denies.
    One shade the more, one ray the less,
        Had half impaired the nameless grace
    Which waves in every raven tress,
        Or softly lightens o'er her face;
    Where thoughts serenely sweet express,
        How pure, how dear their dwelling-place.
    And on that cheek, and o'er that brow,
        So soft, so calm, yet eloquent,
    The smiles that win, the tints that glow,
        But tell of days in goodness spent,
    A mind at peace with all below,
        A heart whose love is innocent!

Lord Byron

Sunday, March 17, 2013

Growing up With Jared: Good Night Sweet Prince...

Growing up With Jared: Good Night Sweet Prince...:      I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind...

Good Night Sweet Prince...

     I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind has not been sharpened.  I'm guessing this because we recently found out that Jared has sleep apnea. Again, one more thing that happens to our children, one more thing they must face with grace, one more thing that makes it just a bit more of a nuisance to live, to exist day to day.  But, I have to say, this is something that can be fixed. When you have a child with special health concerns, it is a relief when the next thing is something that can indeed be fixed, not with surgery, but with a shoebox sized device, a mask, and a long tube, a tube that will help my son breathe when his body gets in the way of his air. And the mask is not huge, thank goodness. Jared is worried about it, the mask, the machine, the stigma, that now he seems to get.  The doctor told him it is private, this machine, that his door can close and that it is not something we need to discuss or tell anyone. Funny, Jared seems weary too, sometimes, sick of sharing with the world what makes him different. He gets it now. He looks to me for reassurance. "No one will see it, Jared; no one will know," I mimic the dr. (OK, except all of you who read this, but please don't say anything to Jared...)  "But what about when I get married? What then?" "Then it is that last thing you do at night before you go to sleep, the very last thing." I tell him this, but I'm selfishly angry too. Same old song: our kids have Down Syndrome, so let's give them a bunch of things to deal with; let's make it a whole package, that continues to surprise them as they grow.  But here's the thing: out kids are so damn resilient that they deal with the medications, the surgeries, the allergies, the...I could go on and on. They not only deal, but they wake up each day and go out into the world, ready to live, with a smile on their face and an eagerness to connect with everyone with whom they come into contact.
     So, when you see an individual this week with Down Syndrome, this week that will celebrate International Down Syndrome Awareness Day on Thursday, the 21st, take a minute to understand what it takes for some of these kids to get out of bed every day and face challenges every day and touch lives every day and love every day. And use that minute to balance yourself, to think about how we all might go through our days and rather than dragging our baggage, lifting it up high above our heads as if to tell the world, I got this; I can handle this, and I can see goodness over and over again.
    And tonight, when Jared and I go to the sleep center at the hospital and he gets his machine, my heart will soar because my child, my very tired child will finally rest.

Sunday, February 3, 2013

A Slice of the Pie

A Thank you Note

To Scott the Manager of  Great Northern Pizza here in town:
Thank you for opening your mind and your heart, for giving Jared his first job, with a schedule and a paycheck,  and for understanding that he needs to start slowly,  just one day a week and just an hour or two for now, but to look at Jared's face, you would think the world had been laid at his feet. I think it  has been. This is a milestone, another step toward independence. And when we go to your restaurant to fill out the forms, those "I have a new job" papers, Jared may not understand W2 or dependents (who ever does?), but he will know that he is valued and that some place needed him enough to pay him. I don't know if you understand how big this is, how important this step is for my son with Down Syndrome. I am aware that places exist in our world that are still wary of taking risks, of gambling with their business by creating opportunities for people with developmental disabilities, but you are not afraid, and for that, I am grateful. Scott, you and your business are modeling for our community what inclusion really means, not just paying lip service to the concept of acceptance, but really doing it.  Sometimes it is more difficult to find a fit for individuals who need extra help, who may not learn things as efficiently as those around them. Thank you for finding a place for our son.  Jared will work hard. You see, his spirit is filled when he is needed; his confidence will soar when he is accepted as an employee, as one of the crew,  not just as a young man with Down Syndrome. And sometimes when he falters or stumbles, I will be there, hiding out in the mall behind your restaurant, reading my book, half waiting for a call from you, but also hoping it doesn't come.