Disclaimer: This post has nothing to do with the book series / movie series “Fifty Shades of Grey”. But I bet I piqued your curiosity!
It often seems as though the older I get, the more I realize that life is not lived in the black and white that I used to imagine. Life, at least in my experience, is often lived in the shades of grey, the places in between, the fuzzy, messy jumble that comprises the middle. This has been clear in so many aspects of my life, but rings true again and again when it comes to Jake and his care.
When we were brand new on this journey through the world of Down syndrome, we clung to the black and white. We thrived off the “when…then…” mentality that was often mistakenly portrayed to us by medical professionals who were trying to provide us with the hope that we so desperately craved in those early days.
We found out when Jake was just a wee babe of 5 months old that he had substantial fluid build-up in his ears, and that as a result, he had some temporary hearing loss. The “when…then…” statement went like this: “when we can put tubes in Jake’s ears, they will drain the fluid out, and then he will be able to hear at a normal level”.
Sounded easy enough to us newbies. We clung to that statement for dear life. It was black and white. When he gets tubes, he will be able to hear. It seemed so reasonable, so simple, so comforting.
Now, four years later, here’s what we’ve learned:
– It took four years and five tries just to get the first set of tubes into his ears, as they were so incredibly tiny that the tubes were too big
– The tubes, once in, are not a surefire answer. There is the possibility they will not stay in. There is the possibility they will only last for a couple of months and then fall out. There is even the possibility that they won’t do the job properly (since Jake’s ears are still super tiny) and that fluid will remain
– Even if the tubes do their job perfectly, it is possible, because of the tiny nature of Jake’s ears, that he will always have some sort of hearing deficit. That he will always require hearing aids.
So much grey. So many unanswered questions.
In the midst of the uncertainty, however, we celebrate the small victories.
A few weeks ago, after four long years of waiting, Jake finally got his first set of tubes!!
And wanna hear the even more exciting news? So far, they seem to be working. It looks as though Jake’s hearing has improved!
Anecdotally, and through a very preliminary (albeit slightly inconclusive) hearing test, it has been proven several times over that Jake can hear better. He responds to requests when I whisper instructions to him (he never used to do this). He even heard me whisper a command and followed through with it when he couldn’t see my face, and therefore was not able to see that my lips were moving. In a follow-up hearing test last week at the Children’s Hospital, the Audiologist said that when she did the test with voice recognition, he scored in the normal range for hearing! (the test was inconclusive, however, because he wouldn’t cooperate for the non-verbal part of the test, which measures frequencies, pitches and technical noises).
We are elated, we are overjoyed, we could not be happier! Our baby boy is hearing better, and this brings us so much joy.
In the midst of the excitement, however, we are pulled back into the grey…until there is solid, concrete, evidence that spans a much longer length of time, and proves that Jake’s hearing is completely within the normal range once and for all, we still have hearing aids. We still have regular ENT appointments. We will likely need more tubes down the road.
It’s not black and white. But we are smack dab in the middle of the grey, throwing a huge party and celebrating the victories!