My sweetie

My sweetie
at school

Friday, 9 October 2015

Rough Landing

Landing In Afghanistan                                              
Someone once compared having a disabled child to landing in a different country than originally planned. The essay was about planning a vacation to Italy and landing in Holland. Your dreams and guidebooks were for Italy and all its treasures, and Holland, though beautiful, was not what you wanted. You had waited your whole life to see this ancient country with its art and monuments and passionate gesticulating people and your plans were inexplicably ruined. The plane landed in Holland.
You were planning your life with a normal child and your child was not what you expected and life would be different. Your heart would rip open beyond what you thought was possible. A country that you had no interest in going to but if you opened your eyes and accepted this new world its beauty would be revealed. I liked the analogy. It had been faxed to me by our hospital social worker when Lueza was an infant and it was clear that she had sustained a brain injury that wasn’t magically disappearing as I had hoped. The plasticity of the brain wasn’t working out. A catastrophic accident had occurred. There had been a cosmic mistake. God had chosen the wrong person for this test. I was too weak to cope. Because I was so weak and hysterical Lulu would have to be okay. This story kept me walking and talking when I longed to drop to the floor and writhe and rend my garments.
Holland was a gentle place in my mind. I had cycled through the Dutch countryside on a student trip in high school. I knew that they had a high percentage of home births. It was filled with Rembrandt and the sacred memory of Anne Frank. They could all speak English.
I wanted to write my version of this unexpected landing. We hadn’t arrived in Western Europe. There were no tulips. No English was spoken. It was on the other side of the planet from where we were hoping to go. Terrorists had stolen our plane. We had crash-landed in Afghanistan. Our baby had barely survived the landing. Her brain was exploding with seizures. Babies were dying. We donned paper robes and held our wire-covered baby who slept for 6 days flooded with Phenobarbital. She was nourished with my breast milk through a feeding tube in her nose. Her seizures became almost invisible. A little gray ashy color would spread around her mouth and let them know the brain was seizing. I thought Lueza was dying. Screaming brought nurses who explained that it was not death. Her brain was just convulsing and because she was so sedated with barbiturates all that showed was a lowering of oxygen in her face.
Holland couldn’t be this terrifying. Everything was too extreme here. Birth and near death. Baby rushed into territory of hospital with other doomed babies. Giant radioactive machines being wheeled around close to babies. Babies who were see-through and not quite finished. Eyes taped shut. Sporting hand-knit volunteer donated wool caps to maintain their body heat. Language being spoken that was incomprehensible. No guide books for Afghanistan. War was unending. You could die of exposure in the frozen mountains. A terrorist could blow you up. Only way in was through a warplane or a crash landing. But the people were famous for their hospitality. They would share their last cup of tea. The beauty of the land was extreme. People lived there and raised families. The love was fierce. Someday I thought, I would write my version of Lueza’s early days and how it was. It was hard to breathe when I remembered this time. 

28 comments:

  1. Beautifully written Jiody, as I type through tears.

    ReplyDelete
  2. Say it, Jody. Say everything you need to say. Today, apparently, you needed very much to share this piece of beauty, heartbreak and the deepest of loves. Thank you.

    ReplyDelete
  3. thank you, thank you, thank you!

    ReplyDelete
  4. Wow! Thank you for sharing your tremendous gift and your deepest sorrow. I am speechless. Just beautiful and touching...again...no words. Only love.♡

    ReplyDelete
    Replies
    1. Thank you so much for reading and taking the time to comment. I am very grateful.

      Delete
  5. Wow! Thank you for sharing your tremendous gift and your deepest sorrow. I am speechless. Just beautiful and touching...again...no words. Only love.♡

    ReplyDelete
    Replies
    1. Thank you so much for reading and taking the time to write to me.

      Delete
  6. Powerful words, raw emotions, beautifully expressed... I have often wondered what those early shocking must have been like for you and your family. From what I could tell - and from Dora's recent post - it seems that despite the many challenges and the pain, your family found a tremendous amount of beauty and love with Lueza and I know you miss her. BTW, at one point when we were going through a very challenging time with our daughter during her adolescence, the principal of the wonderful school full of kids with challenges similar to hers shared the same story with us about landing in a different country from the one you were planning to go to. I loved it then - it helped me reframe it -
    and I love being reminded of it. I found it a helpful way to think about being yanked around like that! I am glad to be reminded of it. Sending you love and gratitude.

    ReplyDelete
    Replies
    1. Thank you so much Ellen.
      Yes.
      Life with Lueza was a tremendous and joy-filled gift. Around the edges and at the beginning it was terrifying but she was everything to us.
      Thanks for reading~

      Delete
  7. The story still cuts to the bone, even as love leaks out all over.

    ReplyDelete
  8. What an amazing perspective you have. So brave to write it, and so important.

    ReplyDelete
    Replies
    1. Many many thanks for reading this and for writing to me.

      Delete
  9. You are no dummy when it comes to grief. You're an expert. And I always had problems with the Italy-Holland analogy. I felt like we'd landed in a distant planet where no had ever visited. No one could tell us a damn thing. Keep writing.

    ReplyDelete
    Replies
    1. Thanks Harriet.
      It's so good that we can share our stories with friends and strangers.

      Delete
  10. I love the analogy of your experience with Lueza's first days. It's so true that you can never be prepared for what is given to you. Thank you for sharing this ritting Jody~~~ With fond memories of Lu, xx Jude

    ReplyDelete
  11. Holland, Afghanistan, Somalia, wherever our girls took us was an interesting journey. I miss those little Dutch girls.

    ReplyDelete
    Replies
    1. Yes. These little Dutch girls were extraordinary. So loving and so loved.

      Delete
  12. Beautifully written and heartbreaking. I have an adopted son, disabled with severe adhd, impulse control disorder, and more than half his life addicted to drugs and rehabs and drugs again-it is wrenching all the time-excruciating most days, and I am still trying to cope with it 29 years later. thank God we both have our second children! They are both gifted, beautiful, intelligent and amazing! xoxo Stephany

    ReplyDelete
    Replies
    1. Thank you so much for reading + writing to me Stephany!!!
      Being a mother can be brutal. Sublime and brutal.

      Delete
  13. Thank you so much for sharing this. I am holding you iny heart.

    ReplyDelete
    Replies
    1. Thank you dear Julia for taking the time to write to me!!!! And thank you for reading…..

      Delete
  14. I found you through Elizabeth whose blog I follow religiously (and who first introduced me to medicinal cannabis which my daughter now receives.)

    Over the years, several well-intentioned friends have sent me that allegory about an unexpected landing in Holland. While I never told them this, I didn't like the story one iota. It didn't reassure, calm, encourage, appease me or whatever else it was meant to accomplish. Instead, I found it disturbing.

    It seemed to reproach me for complaining. And how ludicrous to think that the ordeal of raising a blind, epileptic, profoundly disabled child could be comparable to - spare us - a vacation in a country you didn't choose??

    But your eloquent substitution of Afghanistan for Holland transformed it and made it perfectly relevant.

    ReplyDelete
    Replies
    1. Thank you so much for reading this and taking the time to write me. Yes. What you are dealing with is chaotic and terrifying at times. We were there when Lu was a baby. It was terrifying. Sending you love and support~

      Delete