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  • Approved for CNN

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    Posted December 12, 2013 by
    beihayes
    Location
    Auburn, Maine
    Assignment
    Assignment
    This iReport is part of an assignment:
    Confessions from imperfect parents

    More from beihayes

    The amazing kid who lives in our house

     

    CNN PRODUCER NOTE     beihayes runs a website for caregivers of those with spinal injuries, We Rock, They Roll. Her husband became a quadriplegic on December 21, 2007, when he jumped into the snow to do a snow angel. Their daughter was 6 months old. 'People should know what life is like for those living with a family member with a disability, and that those with a disability can still be amazing parents.' Read her story on CNN.com.
    - dsashin, CNN iReport producer

    Let me tell you about my daughter. She’s 6 and she is the most hysterical, sarcastic, intelligent, funny, sweet, naïve, confident, strong, independent, considerate person I have ever met. And I have NO IDEA how she got to be this way. None. I feel l am a subpar parent, at best. I work, full-time. I am going to school (part-time) to get my masters. I care for my husband, who is quadriplegic, who also works full-time. I care for our dog. And oh yea, I care for our daughter. There are days when I feel like she gets very little of my attention. But she knows how much I love her and that’s what matters most to me.

     

    She is different than most 6 year olds, in that she has a lot more responsibilities than most in life and can act and is sometimes treated like an adult. But trust me when I say, she can also be a “typical” kid. She has temper tantrums, attitude and the usual 6 year old problems. But the reality of it is that she is one fantastic little girl. And really, I HAVE NO IDEA HOW SHE GOT TO BE THIS FANTASTIC. Really, I don’t.

     

    Parenting is filled with guilt. And stress. And more guilt. And a lot more stress. And also lots and LOTS of good things but lots and lots of guilt. Throw on top of that a parent with a disability and another parent who is a caregiver and it’s the perfect storm of guilt.

     

    Our daughter was 6 months old when her dad was injured. And trust me, he was (and is) a FANTASTIC parent. He was (is) incredibly involved. He was just okay at changing diapers and refused to bathe her 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. She loved (and still loves) her daddy. They had a wonderful bond that, at times, I was jealous of as her mom…

     

    And then, as the story goes, our life changed. My husband was injured 3 days before her first Christmas. I do not remember her first Christmas. My parents and sisters spent it with her while I spent it in the hospital with my husband. I went from hugging and snuggling with her to barely being able to look at her without crying. I remember one night in the ICU, the nurses went upstairs to get a rocker for me from the NICU and made me sit and rock with the kid in the room. It was like they knew we needed time together, just the two of us. It felt very foreign to me and did for a very long time. I felt like her babysitter, not her mom.

     

    My husband and I went to Atlanta, to the Shepherd Center, for rehab without her, initially. My mom and sister flew down with her a few days later so we could get settled. But even then, my mom cared for her. My mom was the one that got up when she cried. My mom brought her to visit while I stayed with my husband. My mom became her surrogate mom for almost 8 months because I needed to focus on my husband.

     

    Looking back, it still hurts knowing 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. It also took years until I felt like her mom again. But now, 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.

     

    We worried about their relationship. 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 was going to not connect with her dad because of his injury. And turns out we were wrong. Very wrong.

     

    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. More than once, she’s come running into the house to tell me that daddy got stuck in the mud or fell forward in his chair or ran out of battery while on a walk. More than once, she’s come running to me crying because she bumped her head or arm or leg falling from her daddy’s chair because she was climbing on it. or riding in his lap. Or jumping onto the couch while he was standing since obviously she could get more air that way… 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.

     

    Her love for her dad knows no bounds. And he loves her back just as fiercely. And 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 6 years than anyone ever could. I cannot wait to see what else she teaches me as she grows.

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