It was my turn to share in group today. Of course I had already forgotten her baha and the book to share. It wasn’t exactly my morning. We share a book and a topic once every 6 weeks or so and although I didn’t have half of the lineup ready, I did have my topic.
My topic I borrowed from my online friend Brooke. I don’t mean that to sound weird… I just haven’t met her yet. Brooke emailed me to share her story and her blog and I seriously hope some day we get to meet. The Conley Chronicles details her journey with her beautiful son Reid, who has Down Syndrome as well as her adorable daughter, Elle. I love her writing. It’s fresh. It’s honest. It speaks to me. Recently she had a post on “walking the line.” So Brooke, I stole your topic.
Walking the line isn’t in reference to Johnny Cash or how to maintain your own sanity while caring for your screaming/teething baby. Both good topics. It’s how to balance being your child’s advocate while not focusing completely on your child’s syndrome. I had not focused much energy on this myself but I realize that it’s something that has crossed my mind. And it’s important to talk about.
What I want to do is to stand in front of her as a shield from this judgey, complicated, physical world. I want folks to know that she has TCS and to celebrate it yet I don’t want them to see her as the TCS girl. This is line we’ll walk.
So I introduced this topic in group and cried for a solid hour. Clearly, I have tapped into something that I’m scared of. Scared of giving her the confidence to be anything and everything she wants to be. Confidence to stand up to anyone that does judge, doesn’t understand, or who doesn’t give her a chance. Parents in general want this for their kids. We…have an added twist.
Friends will email that I have to be strong and confident for her. Yes… I know that. I will set an example. That’s not it. I do not want her whole life to be about her hearing aid. To be about her craniofacial differences or what she wants to change about herself.
How do I advocate for her and children like her without constantly pointing out that she has a rare syndrome? The question of a lifetime for me. The conflict lies with the outside world. I want to tell people that she has this thing called TCS, but I don’t’ want them to notice it. I want special treatment for her special needs but I don’t want anyone else to say or think that she has “special needs.” In school, she’ll wear her baha and softband until she gets her implant. Either way there will be a little box on her head yelling to other kids….there is something different here. Even now, going to play dates or kids clubs or the park… I have this bizarre combination of feelings. I am proud of what she has, proud of her hearing aid. I just don’t want anyone else to point it out to me. I don’t want it to be what they notice. Because I do not want her to be treated differently, or me treated differently for that matter. Just like Brooke, I too realize that I cannot have it both ways. I will be her advocate no matter what. I’ll have to explain and defend and fight when necessary. I will do it with all of her best interests at heart and while celebrating her.
There it is. So…we are going to keep advocating and celebrating. Celebrating her detecting sounds, rolling over…and rolling over again, sitting (with a little help from her hands) and knowing her name. Celebrations push all of this other stuff out of the way. That’s what living in the moment really is.
Anyway, I’m sure I’ll revisit this especially when she’s older. Two comments today helped me move on for now. One: take one day at a time. Duh…I know this and so easily forget it. Sold. Two: go out this weekend one night and get drunk with your husband. Definitely sold!
Have a good night y’all!