Just to let everyone know right up front, we are doing just fine. SJ is great, we are still learning to sign and speech therapy is underway. I just wanted to be transparent about the reality of all the complicated aspects of this process.
The moment I knew there was potential hearing loss for SJ I started researching. I've tried to learn all about the deaf community through videos, websites, reading material, and talking to anyone I could find that was involved in the world of hearing loss. I learned that they have their own culture, defined as a group of people that share a language, values, rules for behavior, and traditions. I read a lot of fascinating and encouraging things that made me want to delve deeper into this culture, but some of the articles I read made me feel like, as a hearing person, I was an unwanted trespasser. I didn't understand why some deaf communities seemed so exclusive and defensive. Then I learned about
the oppression that started taking place in the 1800's when deaf people were forced to learn ways of oral communication and they had to fight to preserve their language, which was almost completely wiped away by the idea that deafness was a burden that needed to be removed from society. At this time it was also believed that no deaf person should intermarry in order to try to eradicate the problem. I also learned how up until recently, including in my mothers generation, many deaf people have been misdiagnosed as mentally challenged and therefor isolated from the opportunity to communicate or become social. It's no wonder some deaf people feel like they have to fight against the hearing world to preserve their identity.
When I was told that my daughter had severe to profound hearing loss, I didn't know where that placed her on the hearing loss spectrum. I tried to look up information, but my results were inconclusive therefor I announced to the world that SJ was hard of hearing and not deaf. Since then her team of experts, doctors, therapists etc. have said otherwise. SJ is deaf and I just didn't know what to call it.
I read one article that said;
In hearing culture, the terms used to describe deaf people have to do with their hearing loss. The term "hard of hearing" is better than "deaf." Hard of Hearing people are generally regarded as being easier to communicate with and fit in better with hearing people. In Deaf culture, though, the terms are quite the opposite. There is one label for people who are part of Deaf culture...Deaf.
Not to be defensive, but I did not use the term hard of hearing because I thought it was better. I am not ashamed to have a deaf daughter, misinformed maybe, but the only reason I didn't call SJ deaf is because no one told me! I was afraid to offend the deaf community. I feared that by labeling SJ deaf we could potentially get kicked out of a party that we were never actually invited to. When you learn about deaf culture you learn about deaf pride, which is a beautiful thing, but it can be intimidating when it's new to you.
As a mother of a deaf two year old I am responsible for the decisions in her life at this time. The more I have learned about this whole hearing loss process the more I feel like I am in-between two worlds. I am trying VERY hard to embrace ASL, but it never fails that I am breaking rules about sign names, and grammar, and the idea that maybe the cochlear implant is not from the devil.
The ironic thing is, I've always wanted to adopt. For me personally my heart has ached for the many minority babies in America that need a home. I have always felt like we would some day be a biracial family, I have even referenced this in
previous blog posts. I never imagined though that I would have a biological child that was a minority and who could identify with a culture and a history completely different than my own. It's one thing to adopt a child of another ethnicity, but wouldn't it be strange if you a birthed a baby and the Doctor said "It's a boy... and he's Hungarian! Now here is a book of rules on Hungarian culture and this is how you need to raise him." That's kind of what it feels like. Different, but I don't know what else to compare it to.
Now I could write another 5 paragraphs of disclaimers because I worry that all of this could be taken the wrong way, but instead let me just end with the true nature of my heart. Community and culture are vital to our makeup, but so is individuality. God has given me the gift of motherhood, and as long as he continues to bless me with children whether they be biological, adopted, black, white, deaf, or Hungarian my husband and I will joyful take up the challenge to raise them to be men and women of honor and integrity. There are good days and bad days, but this truth is deeply rooted in my heart.
