At the beginning of the COVID shut down we had a phonecall with Oscar’s Ear Nose and Throat Doctor and she felt as though he may be a candidate for ear tubes. After putting together all of Oscar’s audiology tests, she thought that it was worthwhile trying tubes. Now I know that this may not seem like a big deal, but for us it is. Oscar has a lot of challenges, none of which have a “cure”, but to me ear tubes means that we have a chance at “curing” part of his hearing loss.
Oscar’s hearing loss is considered “mixed” because part of his loss is referred to as “sensorineural” meaning that it involves the brain, but the majority of his hearing loss is a “conductive” loss meaning that there is some dysfunction with how sound enters his ears. Tubes wouldn’t solve the sensorineural portion of his hearing loss, but could solve the conductive portion.
Because of the COVID pandemic, operating room times have been reduced and naturally reserved for those with more serious or urgent needs. Needless to say, I was surprised to get a call from The Hospital For Sick Children wanting to book Oscar’s procedure for this October! I think that I had put this in the back of my mind because I really wasn’t expecting to hear anything until after the COVID pandemic was better controlled.
I was overwhelmed by the phonecall and was eager to share the news. My husband was at work so I called my mom. As soon as I started to tell her I could feel my eyes welling up and I just burst into tears. A while ago I had told my social worker about another experience when I burst into tears. I remember her saying that this was actually a good thing because I am now recognizing my feelings and having an appropriate response. Anyways, I burst into tears.
Why? Because I am hoping for something that will permanently help him? Also the fear of hope, what if this procedure does nothing? Hope is scary for me. I have never been offered anything else to be hopeful for. Neurology will now say how well Oscar is doing but follows that with how “worrisome” his diagnosis is and that we still need to be “diligent”. I have heard the word “promising” a lot. But what does “promising” mean? They are never specific. “Promising” that Oscar can have some sort of a “typical” life? “Promising” that Oscar seems to have avoided the more severe end of his genetic diagnosis? “Promising” isn’t a concrete answer, I am hoping that ear tubes are.
After almost 2 years of treatments and therapies focussed on managing Oscar’s symptoms and delays now there is hope for a fix, at least for a portion of his hearing loss. How could this impact Oscar? It means that he will have better access to sound whenever he is without his hearing aid for example whenever he is around water. I think that this may have a huge safety implication, especially if he has cognitive delays and doesn’t understand potential dangers, at least he could hear better. Even if not for the safety part, it would increase his experience and maybe his cognition if he were able to hear more noises and conversations associated with bath time or a day at the beach.
Hope… it is scary. I do think that I like to keep hope at arms length. It is easier, that way you don’t get let down. I think that once you have gone through the “acceptance” phase of grief, and you have truly accepted your child’s diagnosis and their developmental curve and then someone says “we may have a treatment that could solve one of his problems” you start thinking of what life could be like if this problem were fixed…But I had already thought of what my child’s future was going to be and that abruptly changed. I have finally come to terms with the fact that Oscar’s future isn’t so clear. And I am “okay” with that, but now I am thinking again of what his life could be like if he didn’t have to worry about hearing….
It may seem like I am being overdramatic, but in Oscar’s little world this is important. I know that other parents and families have so many other more urgent and serious medical procedures that they are holding out hope for for their children. Even though I don’t know you, I know that you are out there and I think about you often.