Posted in Autism, Down syndrome

Blog #48~Joy and Sorrow

Blog #48~Joy and Sorrow

Yesterday during the homily at mass the message began with the feeling of true sadness for those who witnessed Jesus dying on the cross.   Then just imagine days later what it must have felt like to see the rock pushed way from the tomb and find it empty.  But then Jesus reveals himself as having risen and bringing the great message of eternal life. What an array of emotions.  The depth in which we experience a range of feelings can be overwhelming. The homily message was this…..  Life is like that with the ebb and flow of joy and sorrow.

Rewind 19 years ago to the moment Nick was born.  “It’s a boy!  Does he have all his fingers and toes?”  He did and he was beautiful.  He was smaller than his brother and his hair was lighter. He was perfect. 🙂 We were elated!  Within ten minutes, they whisked him out of the room for further examination.  He was having breathing difficulties.  The room became silent.

Like a light switch the emotions flipped from joy to fear.  Time ticked away as I sat there deserted waiting to find out if my baby was okay.  Cold and alone under a bare sheet and thin blanket, I braced myself.  It seemed like forever until the doctors came back with Al.  Fear was replaced by sorrow.  I saw it all over their faces.  I could tell the news was not going to be good.  Two words:  Down syndrome.  These two words would change our lives forever.

I never saw Down syndrome as the end of the world. After a week in ICU, the breathing tube and monitors were unplugged and we were able to bring him home.   It was more like entering a different world.  Emily Pearl Kingsley wrote this poem about her experience.  She has a son who has Down syndrome.

“Welcome to Holland”
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. – Emily Pearl Kingsley

Baby Nick sleeps contently after his christening.  See how baggy his white jumper looks with his low muscle tone………

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Our trip to Holland, while unexpected was filled with joy and sprinkled with sorrow.  There were twinges of jealousy on occasion wishing my child could do the normal things that most children naturally did. But what was much more devastating was the second diagnosis of autism.  The trip to Holland took a bad turn to what resembled Siberia. This change in flight plans changed the game entirely.  For me, this is when sorrow took over.  This new world felt isolated.  My son didn’t fit in with the Down syndrome support group anymore.  The autism groups all seem to have children who were higher functioning both academically and stronger verbal skills.  I felt lost and found myself pulling inward.

Eventually, I plucked myself up, got out of the funk and sought support.  Little Friends Center for Autism helped me educate myself and offered trainings to help my son navigate his world better.  The National Association for Down Syndrome (NADS) offered a retreat for families with a dual diagnosis.  This is where we found parents who “got it.”  We all shared similar stories.  Some which we dared not to tell anyone else before as it would be too shocking.  We laughed and cried as we commiserated.  We found a new home.

Right now the days are filled with more joy than sorrow.  But like all of us there are times where I feel overwhelmed and sad.  I try to remember what saved me. Stay plugged in and ask for help. Always keep the faith that there will be better days ahead.  That’s what is in my noggin this week.

~Teresa

This smile brings me great joy…….. 🙂

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Author:

Teresa is the mother of two boys. Her youngest son, Nick is 23 years old and has special needs including Down syndrome, autism and verbal apraxia. She is a parent advocate, speaker and writer who is currently working on the memoir of raising her son, Nick. You can follow Nick world on our Facebook page and Pinterest @Down Syndrome With A Slice of Autism. Find Nick on Instagram@ #nickdsaustism, Twitter @tjunnerstall.

3 thoughts on “Blog #48~Joy and Sorrow

  1. Thanks for this post!! This is so me today. The autism was overwhelming and I was ready to throw in the towel, stop speech therapy because it isn’t doing anything – keep Max locked in his room forever. OK not really. But a really depressing day – attempted potty training – maybe I need to wait til summer 😉

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