Simplistic Beauty in a Complicated World

by Donna Turenne

Message to Members: November is both National Epilepsy Awareness Month and National Diabetes Awareness Month. Donna's poem "One Mother to Another" is published in Chicken Soup for the Soul: Children with Special Needs. The following story is the "behind the poem". SoulSupporter has chosen a story about epilepsy for this section and a diabetes organization for The Power of Parents section.

As I looked for my young daughter (for the nth time) - I found her sitting in a circle with a group of people, seemingly enjoying what looked like a family picnic - although not ours. I could see her reaching over to the middle of the circle, and saying something to the effect of "pass the pop". Although cute and almost comical, it probably wasn't received as well by the people that were trying to have a nice personal family picnic in the park.

One big happy family. That's what she believed the world to be ... if only it was. I used to cringe and stress at some of these times, worrying about what others would think. Ultimately worrying about my daughter's dignity as a person. It seemed that a lot of times, before giving a moment a chance to even happen, I was one step ahead, monitoring her every movement. If I saw that there was a chance of her embarrassing herself, I would be right on it ... pulling her away from the situation, or explaining to others that my daughter had Epilepsy. Sometimes if it felt appropriate I would go into further detail about the struggles she has been through).

I soon learned that no matter what I said - people would form their own opinions. People had their own comfort levels and some just didn't get it. After all, it is difficult to make someone see something that you see everyday, but cannot explain. I learned through time that I had to stop allowing myself to make excuses and paint my daughter's world into a better picture for others to see or relate to. I had to free myself from the chained feelings of trying to constantly comfort others from our reality.

I remember being in the hospital with our daughter during a very uncertain time. We didn't know what to expect - and everything looked very bleak in our eyes. Our daughter was constantly seizing day in and day out to the point that she couldn't walk, talk or eat. This is a child that was always getting into everything. The little monkey that liked to climb, and run and jump. My Mom and Dad kept in constant touch with me by phone while in hospital, and to me it was a safe place to be. I was able to tell them our fears, and worries and I had their full support.

Then, they told me they were coming to visit. I was actually worried that they wouldn't take it very well. They had never seen her seizure before. What would they think of her? I remember telling them - in a defensive kind of way, that "she doesn't normally do this", as they watched her twitching away. It was as though - I was trying to assure them that our daughter was still a 'normal' child. I was actually uncomfortable watching my parents feel uncomfortable around my child. How bad is that? How could I even be thinking of such a thing? Most important, I felt as though my daughter's dignity was being violated, and so by attempting to minimize what they were seeing - was in a sense a form of denying how bad it really was. I couldn't bare the thought of our daughter regressing to the point of being irreversibly disabled. I couldn't bare the thought of her slipping away. I feared that she would be looked at differently, something other than our little "Cammie". I can't really explain it - why I would feel that way. Perhaps on some level, the issues of "stigma's and misconceptions" re: Epilepsy and Seizures is all rolled into one big pile of emotion. Convulsing in front of others is definitely not the most esteem building experience for anyone, and I guess I was taking that feeling on for my daughter.

This feeling or need to protect my child from judging eyes continues, and probably always will, but the degree to which it plays a role in our day-to-day life varies. In the earlier years, I was practically joined to her hip-and would rarely allow her to go on play dates or to birthday parties without me being there also.

I can't be too hard on myself, because at the time, I thought it was necessary. I needed to be there, partly because of her seizures, and partly because I felt I needed to intervene if she was socially 'not up to par' - (she had, as a result of the constant seizures, significant learning problems, which put her at a lower age level than her peers). Often, I was always worried about her "standing out" and that people wouldn't understand her. But, often it was my voice that I heard out loud - refocusing Camille, or explaining to others when I felt she was not "playing right". It was in fact, ME that made her stand out most.

The defining moment for me - when I was actually able to pinpoint a time that I realized how ignorant people could be (which ultimately changed me as a person) was when I was out at a swimming lesson with our daughter. I remember talking to a few mothers sitting around watching their children. We got on topic about how it would be nice to see more instructors per child. One mother said, "Yes, that's for sure, as some of the kids take away from the others. They take up so much time. Like that kid"... she said, as she pointed to one child in particular. She actually went out of her way to ensure we knew which one she was talking about. Bending forward from her seat, with her arm outstretched, she continued to point, and said, "You see that kid there ... the one with the yellow bathing suit ... that's the one." As I'm looking in the direction of where she is pointing, along with the other Mothers, I realized...that it was my kid, the one in the yellow bathing suit.

I was devastated and angry. But that was literally the defining moment. I was later very proud of myself, because it was at that moment that I threw all "comfort serving" feelings out the window, and gave it to that lady in a way that I'm sure she'll never stick her foot in her mouth again. I wasn't rude, but I was very firm in my stand; first in claiming that child in the yellow bathing suit as my OWN, and reminding her that that child in the yellow bathing suit had just as much right as any other child to be there learning to swim. Yes, I did throw in an explanation of how far she's come, and how much she struggled, and nearly lost her life ... but then, that seemed an appropriate time as ever. I wanted to scream on a mountaintop that day. I wanted to yell at the top of my lungs and tell the world what a wonderful daughter I had, and that if anyone had a problem with her, I would take them all on myself. I came home, sat down with pencil in hand - and wrote a poem that quite literally flowed as quickly and easily as I have ever known before.

I also broke down and sobbed as long and hard as I had ever known before. As much as I wanted to throttle that Mother (and all the other one's who stand in judgement) - I thank her now, for being there at that particular time in my life. It was her, that set me free - and I have never really looked back. I now fully accept my daughter for who she is. It is not to say that there have not been struggles along the way, but I have let her venture out more to experience her world in a way that she needs to do. She needs to be herself, and people need to recognize and accept her for who she is and without me trying to intervene and change her. I will still always be there I hope, to help protect her in different ways, but hopefully even more, I will teach her to stand up for herself. I have let more people in to our life - that ultimately help Camille in ways that I could not. She is a beautiful person to know. To look through her eyes, one is able to see a simplistic beauty in a complicated world.

One Mother - To Another

See the little girl, who stands out most
and has troubles following suit,
who forgets a lot, and talks out of turn
and to others doesn't seem very cute.


"She's disruptive"... "Doesn't listen",
"Shouldn't be with all the rest",
You see it ... we hear it,
"She holds your son back from his best."


We see your looks of disapproval
through eyes that have never seen,
the struggles that we face each day,
the place where she has been.


We hear you talk, ... those things you say
though you fail to really listen,
to the voice who's words seem disregarded
"Our star", who to us, does glisten.


She comes home after school, to laugh and play
with her sister and baby brother,
she's tucked in at night, with a hug and a kiss
just the same, as any other.


She wakes each morn, with a yawn and a stretch
and wonders of each new day,
what things she'll see, what things she'll do
in her world ... in her own way.


She puts her shoes on - one at a time
and kisses me goodbye,
to stand in "the group" next to your little one,
Who draws away - her wondering why.


She's young right now, and sees the 'good'
although in time, that's bound to change
she may hear those words, and see those looks
that will make her 'feel' - but strange.


If I could make a wish tonight
I'd wish to make it right,
not for a different, or shinier star,
just that our's would forever, "feel" bright.


To that little girl, who stands out most
and has troubles following suit,
who forgets a lot, and talks out of turn
"We love you, ... You're You, ... and You are cute!"

Biography Biography: Donna Turenne is, first and foremost, a mother of three beautiful children (Camille, Caslyn, and Landon). Married to the love of her life, Donald, she is a practicing registered nurse in Chilliwack, British Columbia. Her stories are inspired by her family's strength and God's love expressed in living with a child with special needs.