Tuesday, October 30

Happy Halloween!

I am so excited for Halloween and so happy that it is finally here! I think it is because I have the cutest little witch and pirate to take trick-or-treating tomorrow night. I have decorated the house this year like never before. We have pumpkins, ghosts and spiders adorning all of the tables and mantles in our house. We have carved pumpkins, baked pumpkin seeds and we even have put up ghost lights on our porch. Drew and his sister make make every day more enjoyable, but especially holidays.

I have been looking forward to Halloween for some time. Really since last year. You see, Halloween Day last year was the low point in our journey to "turn on" Drew's ears. You might think that D Day would be the low point, but really the days immediately following the diagnosis were worse. They were filled with so many unanswered questions. The uncertainly surrounding Drew's future made for some very long and difficult days. October 26th was awful, but the not knowing was even worse. How profound was Drew's hearing loss? What could be done? Would he go to school with his hearing peers? The list of questions went on and on and the uncertainty was unbearable.

Why was Halloween day, in particular, so hard? First, I found out that the audiologist that did Drew's test knew he had a profound hearing loss and did not tell me. After researching hearing loss, intervention and amplification over the weekend following Drew's test, I decided to call the audiologist. I had several questions for her on the testing she had run, results and amplification. I asked her, "Do you think Drew will benefit from hearing aids?" Her answer, "No, he will need a cochlear implant." How did she know he would need a cochlear implant if she didn't know the level of his loss? I requested the paperwork from his tests (she had not provided them to me on the 26th) and on the top of the paper she had written, "V Wave absent at 90db bilaterally". She knew he was deaf and did not tell me.

After finding out that a cochlear implant was likely in Drew's future, I decided to contact the insurance company to get information about our insurance plan. The representative from our insurance company told me that we had no (that's right, zero) coverage for hearing related issues. This included all diagnostic testing, hearing aids, cochlear implants and therapy for hearing related issues. When we learned of Drew's hearing loss I did not think that things could get any worse. But here I was learning that my insurance company would not cover the intervention that Drew needed. How would we pay for all of this ourselves? Luckily follow up calling in the days that followed revealed that we did in fact have coverage, so this fear was quickly dismissed.

It was cold and misting rain on Halloween day last year, which only added to my depression. I barely brought myself to cook dinner and once that was done I couldn't bring myself to do anything else. That included taking the kids trick-or-treating. Halloween was the one time throughout everything that I did not do what I should have for my children. I know that they will not remember the fact that they did no go trick-or-treating when they were so young, but I will remember.

I think that I have done a really good job handling all of the ups and downs surrounding Drew's hearing loss. From day one I jumped into finding out as much as I possibly could about hearing loss and intervention. I accepted the diagnosis and realized that Drew is going to have a great life. But there are days that were difficult and the anniversary of those days bring on a flood of new emotions. I am so happy with where we are at in this journey, but I remember what it was like at this time last year. It's a weird feeling to be so happy with where you are but remember how badly you felt just a year ago. At that time I could not have imagined how far we would come in just one year. I am confident that with time these memories will fall farther into the abyss of 'things not worth remembering' and the new ones of Drew hearing will be in the forefront of our minds.


Mom to Toes said...

I agree! You have definitely done a great job of handling these ups and downs. I love that you are sharing these days with us.

Insurance coverage misinformation that so many people get shortly after diagnosis is one of the most frustrating things about the early days of these journeys. I am glad that you mentioned it in this post.

I have helped several "new comers" navigate the insurance maze in regard to testing and speech therapy. It never occurred to me to post about it.

Another one of those brain fog moments. ;)

Anonymous said...

Have a fantastic time trick-or-treating tomorrow night!

Christian's Mommy said...

Thank you so much for sharing these moments. As a new Mom both new to parenthood and HL, it really helps to hear other family's experiences. Drew is GORGEOUS.


Anonymous said...

Have a great time Trick or Treating tonight. Avery will have a blast and Drew will too! I am so looking forward to seeing Drew this weekend and to hear all of his new words. All of your posts are so nicely written. Thank you for sharing your journey. It puts a lot of other things into perspective.
Love to all,