Moving forward can be scary. When we move forward that means we leave behind what is comfortable and we venture towards that which is unfamiliar to us. Our entire journey with our son Gideon feels like the never-ending uncertainty of moving forward.
Last Thursday, after fasting and being sleep deprived, we took a very mad Gideon to Dallas Ear for another ABR (Auditory Brainstem Response….that’s fancy talk for a sedated hearing test). As always the doctors, nurses, and staff took very good care of our little man.
Unfortunately, the test results came back only slightly better than his April ABR (that is due to the fact that Gideon had fluid in both ears back in April). So as it stands now, our son is still severely deaf in his left ear and profoundly deaf in his right ear. This news was not shocking to us, because we’ve always known that many children with PBD lose more of their hearing (and vision) over time.
Aside from that crappy fact, the good news is that Gideon is now considered a candidate for a cochlear implant (CI). There are still a few hoops to jump through, but if everything is anatomically correct inside G’s head, we can move forward with the CI process.
While I am excited by this possibility of moving forward, I’m also a little uneasy. If I can be so honest, I have to admit that if Gideon had his vision, I’m not sure I’d be considering this route for my son right now. If deafness was the only challenge he faced, I think I would want Gideon to be able to make the CI decision for himself. But the unfortunate & sad truth is that my son cannot see & his life expectancy is short.
So what’s a parent like me to do? I’ve gotten lots of feedback from both sides. We have met several families who have been so pleased with the decision to go the CI route and the kids seem just as happy with their ability to hear. I’ve also heard from the deaf community, many of which make a great argument that there is not anything wrong with being deaf and I agree! Deafness does not stop people from living happy, productive, and fulfilling lives. My cousin and his wife are living proof of that of that truth and very much an inspiration to everyone they meet.
At the end of the day, our situation is simply unique. And no matter what we decide, moving forward is scary. Kevin and I have the daunting task to decide what is best for our terminal son. As I finish typing this out, tears are still wet on my face and truthfully I don’t want to make decisions like these…this part of life sucks. But I also don’t want my son to live his shortened life in both silence and darkness.
Since he can’t see my face, I want him to at least hear my voice.
Thank you all for your continued prayers as we journey down this road with our son. We are trusting in the Lord and in His timing for everything as we move forward.
