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Special Needs

What It’s Like to Have a Kid in a Wheelchair

wheelchair

I used to think happiness was about having a home with my husband and having babies, and going on a vacation once a year. It all changed when my daughter was born, however. Yes, it was still all those things, but when she was born, she couldn’t breathe. She was immediately taken away from me for intensive medical care and surgery. I was alone. I was thrilled to have a baby girl, but I was couldn’t even hold her. I sat in my room hearing other babies cry, but I didn’t have one. It was all muddled up. I tried my best to embrace this different beginning to motherhood.

Night two, she was still alone with tubes attached not knowing anyone, and making no bond with anyone. I just sat by her side, holding her hand and telling her I carried her for nine months, that we would be together very soon we would be together. Her big blue eyes looked back at me with a puzzled look. Did she remember my voice? Little did I know, it was going to be a long six weeks until we left the confines of the hospital. I was trying to hold it together, but that night in my fitful sleep, the nurse came in with a baby saying, “I’m sorry I couldn’t get him to sleep.” Waking in a sleepy haze, I said, “My darling is it really you?” Only to realize the nurse said “boy,” my heart sank saying, “you have the wrong room.” I turned over with a heavy heart and tried to find sleep–a place of solace or torment?

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That was five years ago; now our little lady is in a motorized wheelchair. She is learning to drive it with interesting consequences for us all: running over toes, squashed toys, bruised knees, but she explores. She takes herself to the washing line, and touches her blankets and clothes. She gently rubs her face against the cool washing. She drives to the trees, and touches the leaves and then makes a mad dash to the leaves I just raked into a pile. The sound of dry leaves hits against the wheels of the chair, and pushes up under her feet. Before I know it, she is at the lavender bush pushing to move closer, so she can touch and experience everything. When she doesn’t have control of her wheelchair, she is watching film clips on her iPad, laughing and talking with delight as she recounts the day’s adventures.

I never thought I would see her have any independence, of not needing me for something. We have spent many days and weeks in the hospital. We would travel back and forth from the city, isolated from our family and friends and lives for medical treatment. Sometimes, it became easy to isolate ourselves rather than participate in life. It was easy to mourn the loss of milestones and missed connections, yet sometimes dwelling too long on them, but then this day, I saw my little lady explore her world. The look of joy and delight in her eyes. I realized I had been searching for happiness in the wrong the place.

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I had looked for material things and situations to make me happy. My happiness was longing to be free, and escape and explore a new kind of normal. Yes, it is hard and I struggle on a daily basis. Some days, I don’t know if I can make it through, or even find the next minute, but I do. I look around, and see my 5-year-old daughter with the biggest blue eyes and the most beautiful bouncy blond curls. And she’s doing her best to explore her world and make sense of it. She has many challenges, but she laughs and smiles, and she has a language all of her own that I try to understand; when I do, my world is a happy place. Happiness is when she can put her arm through her shirt or tell me she wants a drink. There is a bit of happiness in each day, I just have to look–and the more I look, the more there is.

Where do you find yours?

ruderman

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