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Rediscovering Love: My 6-year-old and her quadriplegic Dad

| Source: cnn.com
Spinal Cord Injury: ,

6-year-old and her quadriplegic dad(CNN) — Let me tell you about the amazing kid who lives in our house. She’s 6 and she is the most hysterical, sarcastic, intelligent, funny, sweet, naïve, confident, strong, independent, considerate person I have ever met. I have no idea how she got to be this way.

You see, my husband is a quadriplegic. I care for him, I work full-time, and there are days when I feel like our daughter gets very little of my attention.

Isabel was 6 months old when her dad was injured. During her first six months, he was just OK at changing diapers and he had no fashion sense when it came to dressing her. But he loved feeding her and playing with her and those two spent tons of time together.

Then, our lives changed. It was December 21, 2007, three days before Isabel’s first Christmas. At our annual Christmas party with our friends, around midnight, my husband decided to jump into the snow to make a snow angel. Why? Because he’s Ben. I remember looking at him, smiling and shaking my head. He looked at me, grinned and ran out into the snow — and never got up. He had broken his neck at the C4/C5 level and was paralyzed completely from the shoulders down.

I do not remember my daughter’s first Christmas. My parents and sisters spent it with her while I was in the hospital with my husband. I went from hugging and snuggling her before the accident to barely being able to look at her without crying. I couldn’t even hold her because the responsibility of being a “single parent” in the physical sense was so overwhelming, I shut down. Every single minute of the day, I begged someone to fix my husband.

I remember one night in the ICU, the nurses got a rocker for me from the NICU and made me sit with Isabel in Ben’s room. It was like they knew we needed time together, just the two of us. It felt very foreign to me for a very long time. I felt like her babysitter, not her mom. While I rocked her, I stared at her wondering how we were going to manage as a family and how unfair it was to her that we were putting her through so much.

My mom became Isabel’s surrogate parent for almost eight months because I needed to focus on my husband. She was the one who got up with our daughter when she cried, and brought her to visit in rehab.

Looking back, it still hurts to know how much time I missed with my daughter. I missed her first steps. I missed her first words. I missed so much. And it took years until I could let that all go, until I felt like her mom again. I’m finally realizing how hard it must have been on my husband. He was no longer able to hold her. To help her. To play with her. He had to watch from the sidelines while everyone else took care of his child.

As new parents, you expect things to be difficult. But when dealing with a spinal cord injury, difficult doesn’t begin to describe it. I went from caring for a 6-month-old with my husband to caring for a 6-month-old AND my husband.

I liked how things were before the injury. My strong, confident husband took charge and I followed. In a second, it changed. I had to be responsible for our family. I am always the first one up and the last one to bed. I am pushed to the limit physically, emotionally and mentally almost every single day. But it has made us stronger.

As we learned how to live our “new” life, things became easier. We developed a routine. We found our sense of humor again.

We worried about the relationship between Ben and Isabel. A lot. Every time she said that she didn’t like him or want him around, we worried that it was because of his injury. We made a big deal out of it. We stressed about it. We talked to her teachers about it. We talked to a counselor about it. We thought that our daughter wouldn’t connect with her dad because of his injury. It turns out we were wrong. Very wrong.

Isabel is your typical 6-year-old who just happens to have learned more about life than most ever do, one who will place her hands on my face and solemnly tell me, “Everything will be OK.” Our daughter loves her daddy. She knows he’s disabled. She knows he broke his neck. She knows there are limitations to what they can do together but trust me, they push the boundaries every single day.

Izzy puts clips in her dad's hair in 2010. "They love being silly together and for all his big talk about being in charge and her listening to him, he'll do whatever she wants," Hayes said.
Izzy puts clips in her dad’s hair in 2010. “They love being silly together and for all his big talk about being in charge and her listening to him, he’ll do whatever she wants,” Hayes said. View More Pictures Here

More than once, she’s come running to tell me that daddy got stuck in the mud or fell forward in his wheelchair or ran out of battery while on a walk. She’s come to me crying because she bumped her head or arm falling from her daddy’s chair when she was climbing on it, or riding in his lap, or jumping onto the couch from his chair. Too many times I’ve had to yell at both of them for chasing each other through the house; he in his chair and she on her scooter. Too many times I’ve had to tell them to STOP IT because they were about to get into trouble together.

She’s figured out the best way to crawl into his lap to watch a movie. She climbs onto the counter so she can give him a kiss at night. She turns off his chair when he’s in her room at night so he has to stay while she falls asleep. She puts clips in his hair and puts makeup on him to play dress up. She rolls her eyes when Ben tells a terrible joke and thinks it’s hilarious when she tries to tickle him, even though he cannot feel it.

Isabel doesn’t see Ben as a quadriplegic. She sees him as her father. She goes to him when she’s sad. She celebrates with him when she’s happy. His injury does not define their relationship. Their love for each other does.

Every day I get to see that love they share grow into something even bigger. She has taught me how to look past her dad’s disability to see him for who he really is: my husband. The man I married. The man I love.

That little kid has taught me more about love and life in her six years than anyone ever could. She taught us how to laugh again. How to have fun again. How to love each other again. She was the one who taught us that life was worth living. I cannot wait to see else what else she can teach us as she grows.

–Erin Hayes

Erin Hayes runs a website for caregivers of those with spinal injuries. She first shared a version of this story on CNN iReport. Follow her on Twitter @werocktheyroll.

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