Not much has changed I guess because I still find myself wanting to find other people "like me". They don't have to have a large family or cute curly brown hair or freckles or always see the world through rose colored glasses. They don't have to share my faith or my love of the color blue. They don't even have to be the kind of people who get all swoony when they watch shows like Glee or The Bachelor or go to a Blake Shelton concert. The people I'm looking for to be "like me" are other hearing parents who are working their rears off to make the right choices for their Deaf/hard of hearing children. With technology and the ability to detect hearing loss so much earlier, it seems to be a growing club. The trick is finding the parents who are willing to speak out about it, to share their joys and woes, their triumphs, and their steps back.
When I started this blog the day we learned about Liam's hearing loss, I thought it was to help other people in my shoes. I thought I would be some sort of "inspiration" and source of hope to them. I'd already walked the path with CJ, so I thought I might have some good insights to offer. I also thought only maybe one or two people would read it because, really, who cares about what some strange woman behind a computer screen has to say??
What I didn't realize at the time was that my blog would bring people who are like me to me. Every time I'd get a new follower, I'd click on them to learn whatever I could about them from their info. page. If they had a blog, I'd find it and add it to my read list. Eventually I started getting the occasional comment here and there. If it wasn't someone I knew, I'd do the same thing I do with my followers list. Slowly, gradually, little by little, I noticed something. The people posting here or following here are like me. There are more people like me than I knew. I'm not some island somewhere with thousands of ships floating by. I'm one of many.
I think one of the greatest points in which I realized this was a few months ago at the Walk For Hearing in our area. Another mom came up to me and asked, "Do you blog?" I said yes and she proudly said, "I follow your blog". For just a minute, I felt like I was not only the only one like me, but I might even be some sort of celebrity among people like me. Don't worry. It didn't go to my head. I quickly came back to earth and realized that the only people I'm really a celebrity to are my kids, and they are pretty sure I'm usually a celebrity failure. Recently that same mom who came up to me has been feeling attacked for her choice to implant her child as well as give her ASL. Here she is. She and her sweet husband are parents just like Byron and me just trying to do what's best for her child in a world where there is no "right" answer for children like her daughter. They make a decision, one that was anything but easy. They follow their hearts. They share their experiences. They get attacked for it for one reason or another by people who have never met them nor their child nor truly walked in their shoes. And, once again, those parents are left feeling alone like there are no others like them. Interestingly, though, more and more parents are stepping up and sharing who they are and that they, too, have felt alone on their path and is if no one out there was "like them" and that they are just looking for others with whom they could share.
Allow my to introduce myself. My name is Aimee. If you are a parent of a child with special needs, especially a special need that doesn't necessarily have any right answer, I'm like you. If you have children with hearing loss and have taught them sign language despite oralists insisting it was the wrong choice, I'm like you. If you have implanted your hearing impaired child despite the Deaf community begging you not to because it will ruin your child and break his spirit, I'm like you. If you have held your child tightly and cried because you feel at a loss for how to reach them and make the right choices for them, I'm like you. If you've mourned the loss of your child's hearing, I'm like you. If you have ever found yourself angry and frustrated and heartbroken and hopeful and ready to take on the world all at the same time, I'm like you. If you've ever sat through your child's IFSP or IEP meeting and cried because you're just sure there's more that can be done, but you don't know what it is, I'm like you. If you sat in that same IFSP or IEP meeting and felt more full of pride at hearing your child's accomplishment than ever before, I'm like you. If you've ever rejoiced because your child uttered a word, any word, I'm like you. If you have ever lost sleep at night just wondering what more you can do and questioning every single choice you've ever made on behalf of your child, I'm like you. I'm like you. I'm like you, and I'm not afraid to stand with you.
In the end, it makes no difference which path we choose for our children. The specific choices we make for our kids may be the only thing about us that is really all the different anyway. In so many ways, we are alike. Short, tall, hearing, Deaf, sighted, blind, autistic, "typical"...none of that matters. We are all human. And in that sense, we are all like each other. And we need each other.
Oh, I love this. The worries, the tears, the utter joys - we do need each other!
ReplyDeleteSo beautiful Aimee. LOVED this post. I keep meaning to share your blog with my little support group of parents Hear My Dreams (do visit the website). I don't know if you remember, but you were one of the first people with whom I spoke when my first daughter was diagnosed with hearing loss. It was so nice to realize there are others out there who understand. I think for our family with 2 daughters with hearing loss, the biggest struggle has been people taking us seriously because their losses are ONLY mild-moderate. For us, it can be a fight to be noticed and understood. It is so hard to explain that no, our daughters are not Deaf, but hard of hearing and they still need support. There are different challenges on all levels of the continuum. It has taken me a long time to figure out we we fit with all of these... kind of a work in progress.
ReplyDeleteI remember the conversation like it was yesterday. I also remember when your second one was born and you were fighting with the same worries and fears.
ReplyDeleteWe have some kids at Liam's school who's parents feel like they struggle to fit in because they're "not Deaf enough". The worries and fears those parents feel are no less valid than those of a parent who's child is profoundly Deaf. They matter. They need to be acknowledged, heard, and responded to. Don't let anyone sell you short. Raising children who are hard of hearing is no less of a challenge than raising a child who is profoundly Deaf. It's a boat we share together.
Thank you so much for this. I cried reading it. I believe that no one can understand the time and energy we pour into our kids except another parent.
ReplyDeletePeople have accused me (and of course other parents) of only caring about myself, and of making the decisions I did, simply for my convenience. I then know that that is a person that is not really looking for meaningful dialogue. They do not wish to actually discuss the issues in deaf education, or understand where parents are coming from, but only wish to vent their anger.
Thanks again for being there for parents.
Aimee, I just came across your blog through someone else's and I remember seeing you at Moog! My daughter, Sophie, goes there (toddler room 1 on M,W,F). I'm not around very much due to my work schedule, but you may have seen my husband, Jared - he's VERY tall.
ReplyDeleteAnyway, I'm so happy to have found your blog and I will try to catch up on your story when I get a minute. I started to blog about Sophie about a year ago and I'm glad I did. It has put me in contact with so many parents and also helped sort through my feelings.
This was a great post, by the way! :)
- Emily
Emily-
ReplyDeleteI know just who you are!!! Sophie is stinking adorable!! SO glad you found the blog. Sometimes I think I'm just writing and putting it out there into the cyber world where it gets lost in oblivion somewhere.