Stories from the Field
And the rest is…. ‘history’
By Vicki Hunting, Co-President, Iowa Hands & Voices
It was Thursday, April 22, 2004…my daughter Stephanie had been home from school that day with a stomach ache and fever. Late in the afternoon, she seemed to get worse so I took her in to the after hours clinic to see a doctor. After some test results came back, the doctor suggested that we head to the hospital to be checked out/monitored for appendicitis! At the hospital we went through the usual check in/triage process, and explained about her profound hearing loss, and cochlear implant, etc. When it was time to go back to a room and as the triage nurse was passing us off to the Pediatric nurse, I heard her say, “…I’m glad you got this one…”. All I could think was, “Hmm, how do they know Stephanie here already?”
As the nurse was getting us settled in our room, she was asking us about Stephanie’s hearing loss, if she knew sign language, etc. and then told us that her son was profoundly deaf and had a cochlear implant as well! So that explained the comment the triage nurse made to our nurse, who was Cami (Geilenfeldt) Wright! Throughout the night (and it was a long one of tests and drinking yucky stuff), we got to talking with Cami and she told us about a few parents that were trying to put together a support group for parents who had kids who were deaf or hard of hearing (d/hh.) There was going to be an organizational meeting in a couple of weeks with Leeanne Seaver from Hands & Voices (based in Colorado) and could I attend? No, I wasn’t able to attend that meeting, but did attend the next one and have been attending ever since!
Interestingly, the week before all this happened with Stephanie, a good family friend at our church (who is a hard of hearing adult) handed me a piece of paper with an e-mail address on it for Mike & Arlys Jorgensen…she told me that they were involved with some parents trying to start a support group for families who have kids who are d/hh…the rest as they say is ‘history’, coincidence? I think not! Iowa Hands & Voices started in the spring of 2004 with Cami as the Director, Mike as the President, Lisa VanSant as Secretary and me as Treasurer!! I’m happy to say that we are all still involved in this awesome organization!
The Ties that Bind
By Shelley Cates, Indiana Hands & Voices
Chances are, if you are reading this, you are either a parent of a deaf or hard of hearing child or work with someone who is. I hesitate to call our community a “family” because so many groups today call themselves “family” -- groups that I am included in, but I don’t really feel a family kinship with. The term “family,” has been co-opted to the point that it rarely evokes the feeling of faithfulness and belonging that it really ought to.
But in Hands & Voices, we really are a family in the true sense of the word. The experience of parenting a child with a hearing loss -- or being a part of the team parents turn to -- is so unique. All families have challenges, it’s true, but none are quite like the hurdles we face that surround that most basic human need, communication. The choice of modality is a “Sophie’s Choice” in that it will shape the person your child will become at a very deep and fundamental level. As the person responsible for making that choice, you recognize that you will be giving up one future for your child in favor of another. That is an identification we all share, regardless of the modality we end up choosing, and it is an experience we alone go through.
You can choose your friends, but you can’t choose your family. We can all relate to the old adage. I’m lucky that I come from a family with relatively little dysfunction. Family dramas are few and far between, but I have definitely had to just overcome differences with one family member or another, simply because they are family. You can’t just walk away and write them off, you know you are going to see them at the next reunion or holiday, so you may as well find some common ground.
This is also true of our larger family here, among families of children who are deaf or hard of hearing. There may be some you would have chosen as friends anyway, regardless of this unique commonality. Other friendships are born of convenience: you find yourself on the same side of the conference table or you decide to carpool to save time and money. In the long run, when you look back the chemistry that you had with some -- or lack thereof with others -- doesn’t really matter that much because of your common experience. That’s what makes you a family.
When I decided to write this article, the question that was asked was this, “How did you become involved in Hands & Voices?” I’m getting around to answering the question, but I thought it was important to define my feelings about the larger community in order to answer it adequately. One of the moms in my immediate social circle has two deaf daughters, and I have always looked up to her for guidance because she is so successful, particularly as a parent of deaf children. It isn’t that we agree on the obvious issues, I just see her children as well-adjusted, happy and confident, and that is what I want for my child, so I try to emulate her level of commitment and involvement, and bounce things off her whenever I have the opportunity.
The odd thing is that she was involved in Hands & Voices for some time before I finally tested the waters myself. She talked about Hands & Voices at parent meetings at school, she brought in flyers and sent e-mails about upcoming events, but I felt like I would be intruding on her personal space by joining ‘her’ club. It’s a silly reason for me to have turned her invitation down again and again, and I’m really glad that I got over myself and got around to joining.
Now, I find myself asking people if they’ve signed up yet, if they plan to attend our picnic, or to come to a meeting with me, and I’m getting a fair amount of reasonable excuses, so far, none as silly as mine. I hope that people know how genuine my desire to have them join me is... I’m not asking because I just want a warm body in a chair, and I’m not passing out 15 flyers because I have 15 to pass out, I really want you to join me. We’re family, and there’s a lot we can accomplish together. ~