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A Mother in Medical Land

photo by Josh, Flickr creative commons

For a long time I didn’t want to have kids. I felt I was too selfish.

My husband and I loved exploring together. We lived for ourselves, best friends taking on the world. Then we thought it was “time” to have a baby.

When I saw the two lines indicating I was pregnant, I sat on the floor, tears streaming down my face, thinking “What have I done?” Our lives changed forever in many ways.

I anticipated what a baby would bring to our lives.

Preparing the baby’s room, picking colors. How would I carry the baby, in a carrier or a pram? What sort of car seat, what mothers’ group or play dates? I thought of watching my child meet milestones, learn to sit up, crawl and eat.

I didn’t anticipate being alone in the first weeks after my baby was born. I told myself it would be okay, that it’s not as bad as it seems. I would sit in my hospital room expressing milk next to a picture of my baby. She had tubes attached to her.

My baby was cared for by a stranger. All the decisions about basic care were removed from me. I didn’t even have the chance to change the first nappy or choose the first clothes. Instead, it was decisions on surgery, procedures to try, and treatments needed. An indefinite time frame. I would leave the hospital with tears in my eyes, most days struggling to survive. Our first cuddle was three days after my baby was born. My husband wasn’t there. This was all wrong.

I’m not just a mum, I’m a caretaker. I have spent weeks in the hospital fighting for the survival of my daughter. I’ve learned to talk the talk of doctors. Decipher their code.

One early morning I managed to catch the plastic surgeons (notorious for being a tad more arrogant than others) on their rounds. I asked one how skin heals and he said it was “magic,” with a mocking tone in his voice. I asked him again, “How does skin heal?” This time he was laughing. This doctor made me feel so little and stupid.

I mentioned this to a specialist nurse. Suddenly, it was the talk of the hospital, how this junior doctor healed with magic. I talked with the same doctor a few days later and from then on he answered my questions and took me seriously. He made a joke about our previous conversation. I smiled, but there was an unspoken understanding that he shouldn’t mess with a mum.

That was a turning point for me. I realized I had to step up and be heard and answered. I knew my child best. But it isn’t often that they reluctantly say, “Perhaps we should have listened to you.” It’s always a fight.

It can be a lonely place, being an advocate for your child.

If I don’t stand up for her, who will? I don’t want her to suffer just because I want to avoid conflict.

Her medical condition is extremely complex. Most of the consultants listen and it’s the lower-ranking doctors and staff who don’t. Because I stood up for her I once received a stern “talking to” as if I were a child. I’ve tried different tactics to help them understand and listen. I’ve dreamed (and had nightmares) about the confrontations. I think about various approaches I could have taken, but come back to the same conclusion: I was right in how I acted.

I didn’t expect being a mother to be so challenging.

Within this medical-land, there is still a little girl. A little girl growing slowly but beautifully. She’s learning to talk and has definite opinions on everything. She manages to communicate her message eventually. She loves hats, going on mini car adventures and is content wherever there’s water.

Sibling rivalry motivates her to be more involved in play, and seeing how she interacts with her younger brother is magic. She loves her independence and drives her toy car around the backyard. She zooms around squealing with laughter.

There are days when I cry. I wonder if I have the strength to continue. But I make it through another day, another hour, another minute, another second. Even with the struggles I wouldn’t wish her away. She has brought us joy, delight and growth.

I wish sometimes for a little more of the mum stuff and less of the caretaker stuff. When it comes down to it, though, it really doesn’t matter, as long as we have each other.

 

Becky Holland lives on the North Coast of NSW, Australia. She has two beautiful children, aged four years and six months. She writes to make sense of her world, and blogs about the journey she is on with her special-needs daughter. 

Photo: Josh

 

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Comments (8)

  1. Meredith

    dear Becky,
    I loved this post. My second child was unplanned, and I had to get my head around having her. I did, and it was a beautiful pregnancy full of hope and expectation. I had no idea I was on my way to being the parent of a special needs child, or the challenges and gifts that go along with that different journey of motherhood.
    I loved your essay. I feel much the same. I look forward to reading your blog. I will visit you there.
    Meredith

    Reply
    • Becky Holland

      Meredith, so glad you loved the post and thank you for sharing some of your journey.

  2. Kathy Radigan

    This is just beautiful. Although my story is different I have gained my voice through becoming a mother and advocate to my daughter who has significant special needs. Thank you for sharing your story.

    Reply
    • Becky Holland

      Thanks for your message and I am pleased you liked my story. It is amazing what strength we find within ourselves when we need it. 🙂

    • Becky Holland

      so pleased you enjoyed it. I loved reading yours!

  3. Linda Visman

    You are a brave, feisty and loving mother, Becky. Your beautiful daughter is lucky to have you fighting for her! 🙂

    Reply
    • Becky Holland

      Thanks for your encouargement, Linda. 🙂