I thought it might be a good idea to trace progress every month or so and sort of sum things up from a high level.
Two months ago we learned that Alex had SOME type of hearing loss. Even though we were given indications that it might only be mild / moderate (which is safely within the realm of just needing small hearing aids), we were still heartbroken because it meant that Alex would have to use some type of assistive technology. It absolutely sent us into a depression that I think any loving parent would experience if they were told that their child would have special needs or have difficulty doing certain things that other children wouldn’t experience. It was incredibly tough to swallow, but we were encouraged with what hearing aids could do, how small they were, etc.
A month ago we learned the extent of that loss, which actually turned out to be severe / profound. Alex was deaf. I’m not sure if the level of depression this new info sent us into was as bad as hearing about the initial loss, but it was certainly awful. That’s when I started the blog, because I felt that some sort of outlet might be a little bit therapeutic and to also perhaps give back to the folks who had written things on the internet that made us feel better in some way, be it from their encouraging results or just to reinforce that we weren’t alone and that life would go on.
I logged into my blogging dashboard today to look at articles that I had begun but never finished, all of them from the first week or two that I started writing. One of them was a list of things that triggered depressive attacks and another one for triggers that made me feel angry. A lot of dark things were written there that make me wince now. I didn’t delete them yet because I think they’re still of interest because it was what I was genuinely feeling at the time, but I’m not sure what to do with them at the moment either.
Anyhow – I bring that up because it might provide a better picture of where I was a month ago vs. where I am today. I think Shannon parallels me here because we obviously talk about it a lot and generally share the same feelings about it, but I don’t want to speak too much for her.
So today, I think we’re generally doing much better. One of the many things that I was both angry and guilty about was that the grief I was feeling was keeping me from enjoying my kids. I can happily report that that really isn’t the case anymore. We still have our sad days, but we’re slowly… slowly… inching ourselves back up to something that feels almost normal. It’s tough to know what “normal” really is anymore, but I think that has more to do with the fact that we’re still acclimating to having two kids vs. having a child with a disability.
We can watch TV shows where the topic of hearing comes up without it making us so sad that we have to turn it off. We can watch Taylor play with toys and not instantly become sad when they play sound. We can listen to Christmas music without being absorbed by the fact that Alex can’t hear it. Shannon and I went to see a movie and it felt like a fun day date rather than a thinly-veiled attempt at feeling normal. I can listen to Taylor babble on and on and only smile and laugh at it instead of being consumed with the thought that Alex will never be able to do that.
I feel that we’ve made a lot of good progress in getting Alex the help he needs to start overcoming the limitations inherent with deafness, so the feeling of floating aimlessly in the ether has somewhat subsided. The Facebook group that we joined that’s based around parents of kids with cochlear implants has been a fantastic resource and a potential glimpse at what we MAY be dealing with. The experiences there are very real, and very encouraging. All of the specialists whom we’ve met with recently have generally been great people who we feel are ready to go to bat for our son. We’re close to to getting Alex hearing aids which we hope he’ll benefit from. We’re watching Alex’s physical development and seeing great gains in just the past week, where we’ve been emphasizing neck strength, tummy time, etc. There’s progress being made, and maybe even a sense that we’re building momentum.
I have high hopes for Alex’s future that are starting to become high confidences. All techno-hype aside, I’m genuinely feeling that the strong support system that he already has with his family is becoming stronger with the early intervention / therapy / audiologists that are being brought in. It brings genuine comfort to the situation. I’ve also tried to focus on all of the ways that our family is already blessed and that Alex’s condition is just a challenge that’s going to built both his character as well as our own, which takes some of the sting out of the feeling of victimization that we’ve felt for the past two months.
There are still mountains to climb. The genetic testing that’s coming up is scaring me for fear that Alex has more challenges coming that we don’t know about yet. Our hopes are clearly on the cochlear / oral route to the point where it’ll be a major disappointment if Alex isn’t eligible. From what we’ve seen / read / heard, though, not being eligible is pretty rare, and I feel at this point that I owe it to my family to be strong, and allowing myself to have that hope is the best way to enable that.
With a little bit of luck, we’ve seen the worst of it and will be trending upward. Our little boy is going to kick some ass, and we’re going to kick ass to make sure he gets the opportunity.
I’m glad you guys are feeling better. I’m sure it was perfectly normal to feel awful, but now it seems like you guys are getting back on your feet. Keep it up!
I’m honestly not sure quite how I came across this, but I’m fascinated by being able to read a parent’s perspective! I’m hard of hearing myself….and an early intervention SLP specializing in deaf/hoh to boot….but there’s so much that parents don’t share with therapists. I’ve loved reading your perspective so far!
As someone who has a lot of personal and professional experience in this area, I’m so glad to hear that you’re feeling more positive about things. It’s a tough hand to be dealt, but with a bit of work, I’m sure your little guy will go on to do amazing things!
Thanks, Katie. I think we’re totally cool with work, especially because I don’t think it’s going to feel like “work,” it’s going to feel like we’re giving something to Alex. Bring the work!