Adventures of Ups and Down’s

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If a challenging quest is proposed to me, I usually embrace it. It’s especially appealing if it is full of unknown undertakings, guaranteed chaos, and involves terrain that most people would avoid at all cost. I believe that if I have the courage to say yes to unpredictable adventure, I will be given the strength to succeed, no matter how trying, and be all the wiser in the end. I was introduced to my unplanned expedition, in 2007, with one sentence. “Your son has Down’s Syndrome.”

I’m not going to lie. I didn’t heroically brave the news with enthusiasm and optimism. I was paralyzed with fear and panic, and immediately began to mourn the loss of my dreams. This was not what I had planned! I was twentythree years old, and I was suppose to go home with a perfect and healthy baby to meet his perfect and healthy older brother. I had pictured family travels around the world, mountain treks, and spontaneous jaunts. I hadn’t even met our son yet, but the words ‘Down’s Syndrome’ were enough to flip my world upside down.

Our little baby was intubated, covered in endless tubes, wires, and IV’s the first time I saw him. His floppy little body lay motionless, and his face showed little expression of life. The only reassuring sound was the beeping machines that gave him oxygen and kept him alive. We were told that he had congential heart defects, that he was deaf in one ear, and that he had suffered some degree of brain damage at birth. The journey was looking more bleak with every bit of news we received.

My boyfriend stood beside me like a rock. He showed only glimpses of vulnerability or fear, and to me, was the epitome of strength. Family and friends gave us words of wisdom and encouragement, and expressed to us how lucky our son was to have us as parents. Nurses told us how happy and loving individuals with Down’s Syndrome could be; they all smiled nervously at my silent reaction. I was furious that anybody would  have the audacity to say such things to me. They were not faced with my future, and I resented their attempts to support me. I suffered silently, thinking it was perhaps better for him to pass away peacefully in his sleep. I longed to have life go back to what it was before his birth. This thought resulted only in taunting guilt as I passed myself off as a terrible mother.

It wasn’t until our midwife sat with us, looked into my eyes, and saw through my brave smiling face, that I felt comforted. “Feel whatever it is you feel without shame or guilt,” she said. My dam broke. It was a relief to confess my thoughts, and fears, my disappointments and anxiety. After exhausting and expressing every emotion to it’s fullest, I was surprised to learn that my boyfriend had quietly been feeling the same way; I didn’t feel so alone. Perhaps I wouldn’t fail as a mother for this child who needed so much love and care.

When our son was five days old, I was able to hold him at last. The acceptance, curiosity, and exploration began as I rocked him back and forth, listened to his soft breath, touched his little fingers and toes and whispered sweet secrets in his ear. As I gazed into his eyes, I saw compassion, understanding and wisdom in him, that was lacking in me. We made our vows. I said yes to him, and he said yes to life. We named him Nash.

We set off together into the unknown. Nash hurtled through heart surgery and quickly learned to run, climb, ride a bike, and swim. We have traveled the world, have hiked into the mountains with him, and he is always up for a spontaneous jaunt. I am living my dream with an extra chromosome attached to it. When the going gets tough and I feel like I am losing the way, Nash never fails to get me back on the right track – the upside of Down’s.

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Adventures of Ups and Down’s

15 Responses

  1. Kaz – Thank You for sharing this. I can feel your pain in your words as well as your love. Thank you for your honesty…such beautiful words. Funny what life throws us. Deeper understanding and compassion for those who travel the unexpected road. Big love to you and your beautiful family.

    Jill Elliott April 5, 2014 at 1:17 am #
  2. Sweet Kaz,
    From the first time I met you as a little girl, and throughout the years, you’ve always been an amazing example of an “extraordinary human”… This piece touched my heart in its truth. Perfection is rarely recognizable at first sight.
    You have to open eyes and heart to find it. Cheers to your family for such loving acceptance of Nash’s perfection.

    Lori April 5, 2014 at 3:25 am #
    • Thanks so much Lori. I hope we cross paths one day soon. It’s been far too long!

      kazuko April 30, 2014 at 6:44 am #
  3. Thank you for sharing this story Kaz! I will never forget coming into the maternity ward and seeing you there in the room where the massage students met for our practicum. That day is embedded in my memory, being there for a brief time with you as you went through your grief. Thank you for letting me be there, allowing me to massage you. I had always wished I could have done more for you and your family during that time. Life is indeed a journey! Sending love and hugs to your family.

    Alaina Chapman April 5, 2014 at 6:22 pm #
    • Alaina! You were such an unexpected angel in that moment of need. A familiar face in complete mental chaos. I don’t know if I ever fully expressed how grateful I was for your presence and touch. Thank you.

      kazuko April 30, 2014 at 6:48 am #
  4. love will get you through it all, and you seem to have so much in you and around you, thank you for sharing.

    Rudi Thoni April 6, 2014 at 12:37 am #
    • To the man with sparkling eyes and the kindest smile: It is the small gestures of thoughtfulness, love and generosity from the unexpected souls that keep me going. I must thank you!

      kazuko April 30, 2014 at 6:59 am #
  5. Dear Kaz,
    For the brief time we got to spend together, I felt there was something special in you.The courage to write and share your feelings and experiences is so very inspiring. I hope we some day cross paths again. Live strong and stay true to yourself.Thanks so much for sharing.

    Sue Carmody April 6, 2014 at 2:58 pm #
    • Thanks so much Sue! I felt immediately drawn to you the first time we met. I wish you all the best. We miss you here in Squamish!

      kazuko April 30, 2014 at 7:01 am #
  6. I hope we get to meet Nash soon. He sounds awesome. Thanks for sharing your story. I am still not brave enough to write all the dark thoughts I had when my daughter was born but I’m thrilled to meet others on a similar journey.

    sally April 7, 2014 at 12:32 am #
    • Sally, thank you. It took me 6.5 years to open up to share anything at all. It’s never easy, but it is glorious as well. I wish you all the best on your journey. It’s all a big adventure.

      kazuko April 30, 2014 at 7:05 am #
  7. Kaz, this was so lovely. Nash is such a brilliant little being. I feel blessed that my daughter got to share a kindergarten classroom with him. I remember meeting him shortly after he was born over at the White’s. I remember thinking how brave you were back then, and still are. Life throws us all kinds of challenges but I believe we are only presented with challenges we can handle and will grow from. You are an amazing woman and Pascal an amazing man. You were meant to be Nash’s mom and dad! You are fantastic parents to both of your boys. Peace to you and your family.

    Heather Feeney April 7, 2014 at 1:44 am #
  8. Moved by your touching words, and love your for son. Although as individuals it is natural for us to have our worries and doubts its always nice to hear when someone can focus on the positive and be optimistic…as its much happier way to live. I love your blog, and I love hearing about how well you are doing and the “upside!” I’m so happy your sister shares these links! We may have aged but it is clear your heart is still as pure and honest as it was when we were growing up in Valemount.

    Dorothy Wakelin April 7, 2014 at 3:36 pm #
    • Thank you so much Dorothy. All the best to you and your sweet family.

      kazuko April 30, 2014 at 6:42 am #
  9. Ohhh… my dearest Amazonian sister. Thank you for opening your story and your heart. You are a blessing to the planet. Your simple and kind honesty is balm for the heart, and comfort to so many. We are lucky to have you Kazzy. xoxo

    carley Smith April 11, 2014 at 7:35 pm #