Lizzie's Story

When my little Lizzie was diagnosed as having a bilateral sensineural hearing loss (being born profoundly deaf in both ears) I was pretty shocked, and somewhat in denial. I didn't understand anything that was going on around me, all I knew was I had this perfect little girl and all these professionals were coming down on me and telling me she was flawed because she didn't speak like her peers. I got angry. And that anger carried us through everytime someone tried to show sympathy, pity, or stupidity to what we were like. I gave her every chance to hear, we used hearing aids and the cochlear implant. Neither worked for her, and after 5 years with the implant I stopped forcing her. Because your kid will need you to be their strength, their shield, until their old enough to be their own, like all kids. Except this kid is going to have a bunch of people trying to change, alter, and label them their whole life. I accepted my daughter the way she was, I didn't see her as flawed, and I still don't. I see her as different. Like all of us. And that's exactly how I've explained it to her. We all have things we're not great at, for her, it's hearing, but that's okay, because she's great at dancing, drawing, playing pretend, and cooking! There are lots of people who can't cook, but we don't label them as "non-cookers" as a group. You need to try to wrap your mind around that for your child as well and stop labeling them as "deaf". It's quite rude to label someone by the one thing they cannot do, rather than all the things they can do. So, rather than refer to my daughter as "deaf" when I introduce her to new people, I simply inform them that she speaks ASL, so they don't feel bad if she doesn't respond to them speaking. I know this can be difficult because "deaf" is the diagnosis, but it's only what you let it become. In our home we have 3 hearing children, 1 deaf child, and 2 hearing adults and we all speak american sign language. Somedays it is hard for the hearing children. Somedays it is hard for the deaf child. Almost all days it is a challenge for Daddy and I. Every day is rewarding and fullfilling for all of us when we accept each other the way we all are.

You might feel alone right now. You might be sitting there thinking, "Uhm..yeah! That's because I am!" I know that spot, I was there. When Lizzie was diagnosed her father couldn't handle the news, and he slowly slipped further and further out of her life. As a toddler and a small girl, poor Lizzie would sometimes go even months without seeing her father. We felt pretty alone. We were put into a local support group that connects special parents with kids who have similiar conditions so that you can just have someone to talk to, someone who's been there, done that. A woman from the service called to get specifics on Lizzie's conditions to match me up with a more experienced Mama, and told me it usually takes a few days to find a match. After I gave her all of Lizzie's information she made a sound that told me this was going to take longer than a few days. A week later I received a call from her again, with an apology. In all of the greater Phoenix area, there are no children like Lizzie. What does that mean specifically? Well, it means I was the only person in my entire community attempting to raise a child who was profoundly deaf, epileptic, had periventriculargluclomalaysa, had cerebral palsy, and had a cyst on the brain. This was the epitome of feeling alone in my role. Not that it helped any, but I was also a single mom of this child with little to no help from her father, and no daycare would touch her with a 20 foot pole. Life was hard. What they did manage to find was a mom of a girl who had epilepsy, and was autistic, so she spoke in sign language. The Mom called me a few days later, and it was a wonderful conversation. She managed to get across to me how learning with epilepsy is like watching a movie that is constantly cutting out the sound and picture. It is strange, but often times for Lizzie, and she reported for her daughter too, after a seizure certain information would be lost, they would "unlearn" things they already knew and had to learn them again. I thought it was more like constantly rewinding and skipping a movie, but you get the idea. The information is not all there and available to you. That makes things very difficult to understand.

But, the important thing is that I was not alone. I had this small child looking up to me for support and guidance. From the moment she was born my daughter has meant the world to me, and I would do anything for her. The challenges of learning a new language and adapting to her lifestyle are trivial compared to all the joy and beauty she brings me in this world. And everytime I saw her feeling alone, I felt like a part of me was just totally crushed on the inside. I didn't know how to make her not feel alone. I was doing everything I could, learning sign language, participating in the local groups, and doing all our therapies. But you could tell she often felt isolated and different from me. This was unavoidable. The only thing I could do as a mother was keep showing her my love through it and pointing out all our similarities, until she worked through the feelings of being deaf with a hearing mother.

When Lizzie was 3 I met my husband, Mike, and his 2 daughters Pearce and Avery. I wouldn't say it was love at first sight, lol, but we did really hit it off. I had tried to date a few times after Lizzie's dad left and having a child makes that very difficult. When I met Mike I didn't want him to meet Lizzie. Not because she was deaf or anything, but just because I didn't know him! I didn't know if this was going to work out yet or not, and I didn't want to bring my child around someone I wasn't serious about. After a few months of dating we arranged a play date for the children. They were 3, 3, and 5 at the time. After about 9 months Mike asked Lizzie and I to move in with him and his girls, and we've been carving out our happily ever after since. But..a lot has happened along the way. I didn't feel alone anymore, but I also had help in making sure Lizzie didn't feel alone.

Lizzie's 1st grade teacher was one of the nicest women I had ever met in my life. She was a blessing, she was a god send. I felt so embarassed signing like a child to her, but she was just so thrilled to see a parent that spoke sign language and could communicate with their child and the teacher that it really just knocked all my nervousness out. I love signing with her! Because our family was so eager and trying so hard to learn her teacher helped us out a lot. She took videos in the class every week of lizzie signing her vocab and emailed them to us, as well as staying in constant (almost daily) communication about lizzies progress and school work.

Towards the end of the year she broke down and confided something in me, teacher to parent. Now, you have to understand this is coming from a woman who is so strong she will not allow a translator to speak on her behalf, nor has she changed herself through implantation. She broke down and actually cried as she told me what it was like going deaf at age 14 after being a hearing child, and having the world around her slowly fade away into silence. She looked up at me and told me that she was 52 now, and no one in her family, not even her mother spoke sign language to this day. She told me that most teenagers feel like they have no one to talk to, but these kids...most of them REALLY won't have anyone to talk to, no dramatics involved! She made us aware of how many deaf children did not have a parent who could sign, and then thanked us(us being me and lizzie's step dad, Mike). She told us that Lizzie may get cranky and fed up sometimes when we're coaching and lecturing her, but every kid does. The important thing, she said, is that 5, 10, and 15 years down the road Lizzie will realize and come to appreciate how fortunate she is to have a familiy that has learned to sign with her and support her in every way possible. It is only when a parent chooses NOT to sign that the child is truly stuck in silence and suffering.

This woman also developed a lot of our attitude towards life and deafness in general. Being deaf became no more different than having brown hair, or light skin, or freckles in her classroom. It was just a thing, not a defining characteristic of one's personality or character. Her kindergarten teacher, wonderful man, gave us our attitude towards the implant. It's a device. It's neat. It doesn't work for everyone. We fall into that group and no longer use our cochlear implant. We prefer being deaf to using the cochlear implant.

Last summer when Lizzie turned 9 the only thing she really wanted for her birthday was to color her hair. Her older sister Pearce had been using temporary color on the weekends, but it was now summer and there was no school. After talking it over with both her Dad's we agreed to let her do some pink chunks for a month in the summer as a birthday gift. Lizzie was elated! She felt soooo beautiful!

....and then came the stares and the snide remarks from..FAMILY! (Not Mike or I's of course, but her birth father's family..) Oh we were such bad parents for letting her change her physical appearance in this temporary way. I was beside myself with fury. Really?! These were the same people who applauded us for cracking into her head against our better judgement and letting them implant her with this device to try and change her when she was perfectly fine to begin with...and they're upset that she made a change to her appearence that she wanted? That is not the kind of people you need or want around your child. Change for me, but not for you. I made sure everyone who had something to say knew that's exactly how I felt about it, and those who scoffed immediatly bit their tongues. This kind of crud...you're always going to have to deal with people like this. Don't let them get you down, and more importantly, don't let them get your beautiful babies down! That being said...grudges don't do anybody good, so speak your peace and let go of the hurt feelings. :)

Of course, it's hard to cover all the things we've gone through in the last 10 years, but these are some of the life-changing moments that shaped our attitudes and hearts and set us on the path we're on now. You never know where the road a head may take you, so keep your head up, and sign on!