*Disclaimer* This is really a personal post about how I feel. You can skip it if you want. I will forewarn that my emotions are a little raw right now. Also, I reserve the right to delete any comments I feel are being disrespectful. My blog, my rules :)
I don't talk very much about Jillian's hearing loss. I mention it from time to time, but it's never in big detail. This is partially due to the fact that she is doing really well overall. The other reason is a little harder to talk about.
Honestly, I don't really belong to a group.
Hear me out on this.
I do have some incredible friends that I care about deeply, and I know they feel the same way. However, none of them have children with hearing loss. Even if they had hearing loss, they wouldn't completely understand where I come from unless it was the same type Jillian has.
There are some very nice people that I interact with through Jillian's hearing clinic and class. They are good parents that have a bit more understanding about my child's hearing. However, we are almost always the only family who's child does not have any type of hardware in the room. While they are nice to us, we are sometimes left out of conversations. Because of this, we really don't belong with them either.
One of the hardest parts is dealing with extended family. While they love and adore us all, they don't get it. With no family history of hearing loss until old age, they don't understand that this is something we deal with every single day. The worst question I've heard on more than one occasion from the same relatives is "Is it permanent?" Yes, yes it is. It's called hearing loss not hearing missing-but-we-may-find-it-later.
This is something that she lives with every day. This is something that will impact her life every day. And even if you can't tell she has any kind of loss because she is talking well and can respond to sounds, it doesn't mean we're making it up.
When Jillian was diagnosed at 1 month and 5 days old with unilateral hearing loss, we have had a drastic change in our home. All the habits we have, the games we play, and other subtle things we do all have a purpose. They all have something to do with encouraging her to listen and speak. We suddenly had speech therapy appointments, otologist check ups, and booth tests every 3 months to monitor her loss to make sure her hearing doesn't decline at all.
Ironically, I took ASL as my foreign language in college. I thought I could brush up on it, and that it would be helpful. However, Jillian's hearing clinic strongly encourages verbalization instead of sign language. If a child needs signs to communicate, that's one thing. However, it's so beneficial to encourage speech, especially if your child has a type of hearing loss. I actually get a little upset if people are teaching baby signs because they think it'll be fun or easier to find out what baby wants. The only reason it even bothers me is because I have a child with hearing loss. Otherwise, it really wouldn't make a difference to me.
After a rough morning of feeling left out/judged by the parents of children with more severe hearing loss, my mom brought up a good point to me. I need to evaluate the benefits that Jillian gets from participating in these things as opposed to how often my feelings get hurt. While I'm sure today was exacerbated by the fact that I'm popping a baby out any day, it still would have hurt me. However, Jillian has done very well thanks to the programs and activities we do outside of just her speech therapy every other week. Her progress has encouraged me as a parent so much, and I couldn't bear to take that from her.
While I wish there were more parents that are in the same boat as we are, I feel like this is an opportunity for me. As a mother, I am putting the needs of my child first by setting aside my pride so that she can benefit from the programs. As a human being, I am learning to pick my battles and not let hurt feelings define who I am, how I feel, and my overall attitude. As a parent, I am paving the way for other parents who's children have this type of loss who need as much encouragement as possible some days.
Having someone who has gone through the same situation you are can be very important. It validates your feelings, hopefully relieves your fears, and makes you feel less alone. Even though I am still searching for that connection myself, I still hope to be that connection for someone else someday.
Hearing loss, no matter what it looks like, is a big, life-altering deal for the entire family. We live with it every day together.