The Up Side of Down

The upside to Down is when you think you’ve fallen you’ve really just begun.

The upside to Down is the understanding that you’ve joined a whole new club.  One that is cooler and better than you could have ever imagined.
The upside to Down is smaller ears, smaller hands, and smaller eyelids.  Smaller everything.  And isn’t everything including shoes, cuter smaller?
Hobbs is my youngest son.  Born just 449 days ago.  He is what the text books call developmentally delayed. Special. Some older references would even say, “retarded.”  It’s not ok but I don’t think they meant it they way it feels.  Hobbs came with the magic number, trisomy 21 and that means he has Down Syndrome.
Somewhere, deep down, I guess I knew that this would happen.  I declined the genetic testing offered with both of my pregnancies.  I was afraid of what I might do if I did know, like for sure know.  Would I judge him?  Would I for a moment not love him?  Put this diagnosis in a box and label it ‘bad news.’  It was better for me not to go there, so we didn’t.
You just know some things as a Mom.  Sometime, we can predict the future and the fate of our children.  Before they fall backwards or grab the wrong thing off the table we’re there for them, easing their pain and avoiding the mess.  But with Hobbs still inside me, I couldn’t do any of that yet.
He was evicted on a short term lease contract at 37 weeks.  I remember with my first son Otto, who also came via cesarean, the sense of relief I felt when the doctor brought him out, despite the whole numbed from the waist down thing.  With Hobbs’s birth there was no sign of relief.  They pulled and yanked and sewed and stitched.  I cried and cried and cried holding hands with a stranger.  A nurse who after Hobbs was born asked me, ‘Why are still crying?  He’s here.  It’s over.’
It was far from over.  Have you ever been in a room full of machines, and teams of people, and a newborn baby, and a husband, and a Mom and heard nothing?  Silence.  That’s when you worry.  Go ahead and freak out at that point because something is definitely wrong.  It was belief that had me spinning, there still wasn’t any proof.
Until, there was.
Our doctor very gently began to describe Hobbs’s physical attributes:  the fold over his cute little ears, the one crease in the palm of his right hand, the beating in his heart.  It looked and sounded like Down Syndrome.  It felt as though someone turned off the oxygen in the room.  Everything I thought I knew about God, myself, our family, everything was in limbo.
There is a crossroad in grief.  A point in which you can turn into fear, what ifs and why Me’s?  I tried that path momentarily.  Would he ever go to school?  Have a job? Go to prom?  Get married?  Live with me FOREVER?  I mourned the loss of certain dreams I as mother had for Hobbs.  Then I realized those things aren’t necessarily promised to any of us.  We’re all living one day at a time.  We don’t get to know our life story.  Not on day 1 or 50 years from now.
“What do we do?”  These simple words fell out of my mouth.  A nurse, no a saint looked me striaght in the eyes and said, “You’re going to love your baby.”  After a quick look into my Husbands eyes, I knew she was right.  We were going to love our baby.
Meeting Hobbs was like meeting the dream I never dreamed.  Not because it wasn’t a good dream or a beautiful dream, I just didn’t know it was possible that I could live this dream.  That I could be ‘one of those’ families and be happy.  Weren’t these the kind of things that happened to the Mother Theresa’s and Emily Kingsley’s of the world?
When you focus your attention on what CAN be and leave the “cannot’s” and “never wills” behind a whole new world appears.  It looks a little wild at times and not like everyone else’s at all, but THAT is the upside to Down.
*This is the essay I shared for Listen To Your Mother. It was a dream come true.
(What little dream are you sitting on?)
There is NOTHING like some good ol’ story-telling.  After this experience I can say that I have a better understanding of my own Mother.  She did not inherit the taking photos gene.  Or the write down every mile stone moment gene I so longed for her to have… However she did acquire the gift of spoken word.  That woman along with my darling Grandpa and my two wildly entertaining Aunts can tell stories.  It feels like millions.  I’m pretty sure it’s at least 1,000.  The point is, I learned acceptance of what is.  I am at peace with the way we are.  With the way they are and most especially where I am.  I sit before my computer changed.  Softened.  Delighted and surprised.  I had NO idea just how fun this would be.  Fear gripped me to the very last moment as we took our own seats in the theatre.  At that instant I handed the results over to God then I enjoyed myself.  Being a listener, being one who shared.  It was all good.  I wore my Mom’s signature red lipstick and  it worked.  I felt brave and beautiful.  There will be a video of the entire night available in a few months.  I look forward to sharing  with you all the other women’s stories.  They will knock your socks off.  Hope to see you back here again very soon!
xo
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11 thoughts on “The Up Side of Down

  1. Mery,
    Glad you shared it so more could enjoy your prose. You do have a skill with taking a pen to paper and beautiful words emerge. I admire you – your bring sunshine to my world. You know I love my sunshine and I love you! Cindy

  2. As always you’ve touched a special place in my heart I didn’t know existed. I knew the moment you shared about Hobbs you were given a blessing and you would soon realize it, embrace it and really thrive. You were chosen long ago for this. Everything you’ve been through in life has led you to this moment. My heart swells every time you post a new pic. Every beautiful moment captured of your life and shared with those you love gives me hope that no matter what struggles your family may have, you will not only overcome them, but teach others along the way.
    You give hope to people like me who sometimes forget, what I see as a potential negative, will turn into a positive if I accept it, and embrace it as part of my journey. I love you Mery, and I can honestly say that today. No false love, no expectations, just something pure that flows from my heart. <3

  3. My darling Mery, your blogs never fail to humble and uplift me. What a blessed spirit you are. I feel so grateful to know you.

    1. Sandy- I am so glad whenever I see your name in my inbox. I instantly recall bouts of laughter and words of wisdom. Thank you for reading along, Sandy. Each time I drive up North from my house I think of your family naturally, I’m talking about Freya.

  4. In utter awe here! The depths of my heart brought tears to my eyes & a frog to my throat. I just want to reach out & hug you! I love how in sharing your story, it releases broken pieces of me that I can literally feel begin to mend. <3

    1. I’d pay top dollar for a round of hugs from you four. Really, I would. I don’t know if its possible to say thanks enough to all this love, support and encouragement I feel surrounding me… Maybe just by truly receiving the gift I can do it justice. I receive it! Love you sister

  5. I loved this post! I have always said that Ella is everything I never knew I wanted in a daughter. It really is like a little club that you never knew you wanted to be a part of and now 6 years into it I wouldn’t change a thing!

    1. You found me! I so want to get together and talk more. I feel like I could talk with you for HOURS. Watching Ella read her first book out loud brought me tears and renewed hope. Thank YOU!

      1. I still get brought to tears every time Ella reads me a book!!!! We definitely need to get together! It’s always so good for me when I talk to my friend whose daughter (who has DS) is older than Ella, it helps me! I found you on Facebook but there is no option to friend request you!!

  6. I cried, I died and I fell in Love on the upside of down………….Again….
    Sending Light and Love
    Rebecca

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