This little light of mine

In all the craziness of this time of year; the wrap up at work, present buying, birthday and Christmas celebrations, wrapping, wrapping, and more wrapping it is easy to get swept up into the madness of the holidays. Every night has been filled with either baking goodies to give out or wrapping presents, after spending a day working and living the glamorous mum life.

But, other things have to get done too, and as the girls move from preschool to Junior Kindergarten, I have decisions to make. Raegan doesn’t need to register for school yet, but as I’d like Ella to be enrolled in a school program with therapeutic elements and reverse inclusion, her application is due sooner. So this week, I met with Ella’s teachers to complete the application and naturally this includes areas of strength for Ella and other areas of difficulties.

Ella’s teachers started by telling me how empathetic Ella is; how much she cares for the other kids and wants to include them; how she offers them a hand when they’re sad. They told me about how curious she is; always asking why something is the way it is. They told me how determined Ella is; how she will attempt to army crawl throughout the whole school just so she can be independent. As much as the idea is difficult and upsetting, one of the reasons I’d like Ella to be in a wheelchair is for her own independence; for her to be able to move around on her own.

Ella’s teacher described her body as not being as strong as her mind; something that is true, though difficult to hear nonetheless, how no matter how determined that girl is, her body has limitations that she tries to push through, often completely exhausting herself. Her list of goals for next year is really focused on building that strength for her to gain more independence, something most 4 year olds are really craving.

But it was when her teacher described Ella as a fighter – no matter what, fighting to use her right hand, fighting to sit up straight, fighting to walk a little further in her walker, or fighting to keep going despite it all – that I really flashed back to that tiny baby born too soon. I told them, then, that Ella has been a fighter since birth; literally fighting to survive, the tiniest baby I had ever seen demonstrating a strength and desire to live that I had never seen before, or since.

Because the simplest truth about Ella is that she is a fighter, but she’s also incredibly smart and bright, she’s happy and loving and longing to experience life. Ella is the brightest light on any dark day and I’m lucky to call her my daughter.

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2 thoughts on “This little light of mine

  1. Terrific piece! You are correct; the image of a child in a wheelchair is hard for most parents, but it gives children freedom. Freedom and speed, which they desire to keep up with classmates as they race down the hall or even across a room. As an OT, I can see parents cringe when equipment is suggested, and I try to encourage them to see what it can provide for their child. I am going to share your post with them. You are a wonderful warrior for your child!

    • Thank you so much! It is a slight twinge of grief, as you have to change your viewpoint of how life would be for your kids, but in the end, I truly believe that most parents just want what’s best for their kids, and will try to move heaven and earth to make it happen.

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