The cost of better hearing.

I'm clearly in the wrong profession.

The audiologist gives me some price points.. $700, $1000, $1500.. per ear. PER EAR. How many ears does my kid have again?

Yikes.

Then he breaks it down. The $700 model, with the APSEA discount, would actually be $522. PER EAR.

And then ear moulds. $46 each. FORTY SIX. PER EAR. And while he's growing they'll be replaced every few months.

I'm clearly in the wrong profession. Who knew little pieces of plastic could cost so much. I should go in to making those for a living.

The audiologist calls me later. There's another option, less bells and whistles (which are useless and wouldn't be used anyways). This one is $382 per ear. We'll take it.

Decisions. Decisions.

The audiologist shows me this and tells me to pick a color. 

Since the one thing I was certain of is that we wanted Phonak brand I'm okay with my choices. 

My requirements beyond the brand  are straight forward: something durable. These are going to be used by a baby. It will be wet. It will be dropped. It will be well used. It will be... abused.

Bells and whistles? Not needed.

Model? No clue. 

But I like to ask questions, so I start asking about prices. And that's when he finally gives me some details and model choices.  Since John isn't with me I say I will call later and let him know.

We settle on the Phonak Bolero M13 Q 30. There's not as many bells and whistles. Features that wouldn't be used anyways. Still, they're $382 each. Sadly, none of the colours the audiologist showed me are in this basic model. boo. 

Ear Impressions.

First ear impressions were done today. And I was flying solo.

The process is like this: they stick a super small piece of foam on a string into the ear canal. It's basically like an ear tampon. Anyway, they stick that into the ear, push it in using a special tool, check that it's in far enough and the squeeze in the impression goo. Once that's in it has to set for about seven minutes or so - meanwhile keeping baby's hand out of it - and then it can be removed.

Since I knew that the audiologist I'm not a fan of wanted to try for some frequencies again today I kept O hungry and sleep deprived. Since he was pretty chill when we got there I decided to save the bottle and let him try. I tucked O's arms into the moby wrap I was wearing him in and snuggled him close while the audiologist started.

Annnnd then a major meltdown happened, because who likes having stuff shoved into their ear?

Luckily my hungry little one settled right down for his bottle and the first round of goo inserted.

Then we waited. And the audiologist complained that he didn't think it was in far enough. And we waited some more. And he complained some more about thinking he would need to redo it. And his assistant told him to think happy thoughts. And we waited some more. And the finally it came out and... It was good!

Time for ear number two. I had saved some of the bottle so as soon as the meltdown started I gave him the bottle and he settled. Tampon inserted. Goo inserted. 

Sleeping while the goo sets.

Wait. Complain. Wait. Remove.

And he wasn't happy with it. Insert another tampon. Try to settle the baby. Adjust the tampon. Insert the goo. Wait. Wait. Remove. This time it was good.

Thankfully.

We then go to repeat the Tymps test. Right ear was good, left ear showed some possible fluid.

Since at this point O was still sleeping the audiologist brought us to a third room and again started to try testing a few frequencies he wanted to "be sure of".

All of the electrode things were attached.  The ear pieces inserted.

But my sweet boy had other plans. About 20 minutes in he woke up with a big smile, and that was it.

Our SLP came in to chat at this point and that was it.

The takeaway from this appointment: always bring a moby wrap.

Normal.

I just want so badly for my son to be normal.

But that's such an arbitrary word. What is normal?

This hearing loss, and its challenges, and its triumphs will be normal for O. And by extension normal for us. He won't know any other reality because this will be his reality. He's too young to remember a life before, before hearing aids and audiologists, before speech language therapy and regular hearing tests. This will be normal. It will become normal. For him. For us.

And I will try to bring that normal to the people we meet. To the strangers we encounter. To our families. To our friends.

Angry. Upset. Frustrated. Hurt.

Angry. Upset. Frustrated. Hurt.

These are all feelings that I'm feeling right now. Are they fair to the people I'm feeling them towards? Not at all. But I feel them none the less.

I'm angry at the people who get pregnant by accident, and have a perfectly healthy child.

I'm frustrated by the people who neglect themselves and their bodies while pregnant, and have a perfectly healthy child.

I'm upset that I did my best to do all of the right things, the wise choices, the best I could possibly do... and it wasn't good enough. Somewhere along the way something happened. A missing puzzle piece, and that hurts.

It hurts that I spend my nights wondering. Thinking. Blaming. Did that glass of wine I had when I was about two weeks pregnant cause O's hearing loss? Did I eat too much fish? Not enough fish? Did I take my prenatal vitamins every day? Did I have enough folic acid? Did the fact my water broke first and I was in labour for 22 hours cause this? Was it his brief stay in the NICU? Is it because I couldn't breastfeed? on, and on, and on.

There are so many what if's, maybe's, should have's.

And it makes me angry. Angry that we may never know where this blip came from.

I love my son, more than words can say. I don't love him any less because of this. It is in no way his fault. But I think maybe, if truth be told, I love myself and my body a little less right now. And that makes me angry too.

Scared.

You can put many other labels on what I'm feeling if you'd like. Worry. Anxiousness. Concern. It all boils down to fear.

I would be lying if I said I wasn't scared.

Scared of what the future holds for O. Scared about how his peers will treat him. Scared about how adults who don't know him will respond. Scared about the possibility that family will treat him differently. Scared that I will treat him differently. Scared about the challenges he will face. Scared because I can't fix this for him. Scared that people will treat me differently. Scared that people will think it was something I did, something my husband did.

How can I not worry about what the future holds for my sweet little boy.

Shell Shock.

The audiologist just gave us the news that no parent wants to hear: our child has moderate-severe hearing loss in both ears.

The next few minutes, or were they hours, pass in a blur of information.

He will need hearing aids. Is an excellent candidate for hearing aids. Likely won't have 'deaf speech' if we get treatment started as soon as possible. Will need hours of speech therapy. Someone from a foundation will be calling. We will need a speech language pathologist. It could worsen. It might not worsen. We will be referred to an ENT [ear nose throat specialist]. The audiologists do the fittings for hearing aids.

I am in shell shock.

I know deep down inside of me that this is happening. But part of me is in denial. Another part of me is thankful that this is the only issue. I know that he is here with us. He is happy. He appears to be otherwise healthy. We are lucky. We can do this.

But still I am in shell shock. Denial.

The cute little outfit I just had to show our SLP

The one good thing I remember from the time following his diagnosis is the speech language pathologist we had already worked with. Whom I had passed in the hall minutes before, quickly stopping to show her how big O had gotten and his cute little skeleton outfit, and had given the thumbs down to when she asked how the testing was going because I still couldn't speak it. She came in the room, and took our case.

Stole it might be a better word.

I'm pretty sure the audiologist I'm not a fan of was planning to have us work with a different SLP. But she came in and said, in no uncertain terms, she was going to be working with O.

I might still have been shell shocked at that point. But next time I see her I will be letter her know how grateful I am for that.

As I had spent the morning venting on twitter about the lack of bedside manner from the audiologist I took a quick minute to post an update. There was an outpouring of support, of DM's, of kind words. They helped alleviate the shell shock.

Little by little I started to come around. We can do this and we will do this because we must do this. We will do everything and anything we can to see to it O has every available opportunity. That he knows how loved he is, and how awesome he is, and how normal he is.