I'm furious.
Not because of something that happened today, yesterday, last week, or last month. Not even something that happened last year.
I was in full nesting mode this evening, clearing out my desk, making labels, and getting everything in order to prepare for our little girl's arrival. I went to go place Christian's updated audiogram from Hopkins in his medical binder, and I started flipping through the pages. This binder is our bible. It's thick, and holds every single medical record I have on file for this kid that has to do with his hearing loss. It's meticulously organized and labeled. It comes to every appointment with us. All the contents are even scanned onto an archived drive for "just in case" moments.
At first, I was glancing at how much he progressed from going unaided, to aided, to implanted. Then, I flipped through our CI candidacy section, re-reading speech-language evaluations, genetic testing results, and even the psychological evaluation.
Then, I flipped to the only tab in the binder that isn't labeled, yet I know exactly what's in there.
The first document in that section is the red note that was given to us after Christian's newborn hearing screen. You see, at our hospital if your child passes the hearing screen, you get a green note with a smiley bear, which details the OAEs that they did, and a signature. If your child "refers" (come on, just call it what it is, it's failed), you get a red note, also with a smiley bear, that details the OAEs, and which ear(s) were tested. Our red note said that we referred on the right ear, but passed on the left...and then has a note on it "Unable to acquire OAEs in right ear, due to fluid in ears from C-Section delivery".
The second document in this section is a packet of information from the first ENT's office we went to to get Christian evaluated. A note from the ENT on the front to our pediatrician says "Normal hearing per attached OAEs. Possible eustachian tube dysfunction due to fluid in ears from C-Section". Yes, this was the well-respected doctor at one of DC's largest ENT practices who looked me, the brand-new Mom, in the eye and said "Christian can hear perfectly, look at how responsive he is".
The third, fourth, and fifth documents in this section are all from our very reputable Children's Hospital, all of which show no responses on his OAE, but yet in the notes section all have varying forms of "Needs more testing, refer to X audiologist".
Now I ask myself why didn't I ask more questions? Why did they piece together OAEs and DPOAEs at this office? Why did they assume that his hearing loss was due to fluid from a C-Section delivery? Were all of these doctors in disbelief?
Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?
Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.
So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will.
I'm prepared to possibly get another red note with a smiley bear in 2 short weeks when our daughter is born. And if we do get that red note, I'm going to cry. I'm going to be sad. Then, I'll make the calls I need to make, put our action plan in place, and make sure that we never, ever, have to go through what we went through with Christian once again.
As a parent, you want your child's life to be better and EASIER than yours. A hearing loss, no matter what level, makes a child's life hard. Then again, having a Deaf child is all I know. I don't know what life is like without pilot caps, ear molds, or topstick wig tape. I don't know what life is like without modeling language the way that I do, constantly narrating my life. I don't know what life is like without sign language. I don't know what life is like without running to the Dry-n-Store first thing in the morning to get all of the equipment ready to turn on my kid's ears. I don't know what life is like without having a Deaf child.
Just when I think I've gotten through the grief, it appears again. I'm sure my pregnancy hormones have something to do with it. When I think I've got things under control, it sneaks up on me. I guess I should just come to terms with the fact that a part of me will always be angry, and that same part of me will always be heartbroken for my sweet son who doesn't know what life is like without his magic ears.
10 comments:
Your post takes me back 2.5 yrs...we went through kind of the same thing with Thomas and our first few audiologists/ENT's. Thomas had his first professional hearing test at 4 days old...from that time and for the next few months we were told "he has near normal hearing from his right ear"...at the next appointment "he has near normal hearing in his left ear"..WHAT THE HECK? We could tell that they were uneasy testing Thomas and after seeing all their audi's and two ENT's my dear hubby asked them how many babies they have tested/dealt with.."You're the first" we were told.."OK..see ya later" we said. We understood that they had to learn but our son was not going to be their guinea pig.
You know the feelings that a Mom feels as you are putting your child through all of this testing..its an emotional roller coaster! We were meeting with the
2nd audi and seeing how upset I was (it took nothing to make me cry...just looking at Thomas and thinking of him not hearing me would start my tears) she says "Hellen Keller was deaf and blind...she was once asked if she could choose one over the other which would she choose~ she said she would rather be blind than deaf" WHAT THE HECK? I looked at Jim and I couldnt stop crying ~ I took Thomas and walked out.
This ENT office is right down the hall from the boy's pediatrician...there are many times I passed their door and I have wanted to go back in and give them a piece of my mind for putting us through what they did...I haven't ~ yet!!!
Sorry to go on and on...just think of how fantastic Christian is doing now. You guys are doing an amazing job as not only being parents but narrators, therapists and authors (this blog)!!!
OK..I am done now!!! lol
I know the feeling. You know us, we have 4 boys, the third and fourth are deaf. But the 4th... we insisted on full hearing tests. We scheduled an ABR, but they mistakenly assumed we meant OAE and so when we went in the weren't "set up" to perform one. Of course, the results were unclear. And the extremely young, very inexperienced audi said that it was good, he is probably fine. PROBABLY?!? Kevin went ranting around the entire practice explaining why we should not have to wait 3 days or even 1 hour for the full ABR which would be definitive. They didn't care.
When we returned, and when a more experienced audi, he failed the ABR. And the man was very sorry that his coworkers had been so unready for the situation. It was like they didn't believe it just because most kids they see are fine and failing the screening doesn't mean profound deafness.
From my experience, OAEs are not a very good test. As you and I can both attest, the results are not definitive. I always recommend ABRs to parents, and now the ASSR as well, if the amount of residual hearing is in question. By the ASSR we knew that our 4th son had NO residual hearing, which assisted in the surgeon's decision to implant early. There was no point to belaboring the hearing aid trial once we knew there was no benefit.
The wounds will scab over, and you won't notice them as much in a few years. The scars can be reopened by unexpected things, though, so make sure you have balm with you-- the balm of other parents who relate and can cry a little with you.
And to think, two years ago you didn't know how to read these tests, about the science behind CIs, how to converse in ASL, or where to buy non-fleece lined jackets. But you gathered yourself and did what you had to do to make your son flourish the way he has. And for that you will alway impress me.
Beautiful post.
Love and hugs.
Beautiful post. My son was diagnosed a lot sooner, without any denial by anyone, but I too remember getting the "referred" paper. (What a ridiculous term.) Every now and then I take it out of Ben's accordion file and relive those early days.
Good luck with the last two weeks, and welcome to your new baby! Red paper or not, she'll bring you endless joy.
I can empathize with you. I was also told (after my son failed three newborn hearing screens in a row) that he only "referred" because he had fluid from a c/s and there was NOTHING to worry about. Grr.
Christian is doing SO amazing and you are such an incredible mom. I am amazed by you!!!
Hang in there.
I continue to love to read your blog so much. Your post made me think back on our past year too, and to that day, after 3 failed newborn screens, and one failed "he's too little for results" ABR, a snowy day 2 days before Valentine's Day that he told us that he had "severe-profound hearing loss." She wouldn't say deaf, so neither would I for awhile. It was like it was a bad word. I also had to smile about the binder. It was a gift from a friend of a special needs child. It has been a life-saver! I also take it to all of his appointments, and it keeps me sane, being able to pull out documents at will.
You are amazing, and your son is doing so well! Congratulations. You're truly a great role-model to us newbies.
Christina,
There was no newborn hearing screening when Jordan was born. You had a heads up. Be damn thankful for that...and relax your hormonal self *smile* Not long now!!!
Love,
Jodi
Christina,
I'm in tears. I wish I was close to give you a huge hug right now! Even though we both have a deaf little boy (and very cute ones at that!), a big difference of our children is that Christian is your first child and Aiden is my third (and probably last). You have been MY strength throughout so much of our journey. If I ever felt down and out, I would seek out Christian and watch videos posted and he always provided me so much hope, and still does today!
I just want to remind you of what a wonderful mother, therapist and all those other roles, you are to your precious little boy. But not only that, but what a wonderful person you are to so many people, like me, who have felt so lost. You have helped us find our way. You have let us know, through your sweet baby, that everything is going to be okay.
I wonder too, if the grief will ever go away. Just tonight I looked at my husband with tears and said, "I can't believe he's deaf" ... out of nowhere. I wish I knew it would go away and I try to have faith that it will.
This little girl will teach you just as many lessons as Christian. And you are going to be such a great mommy to them both! You rock!
Hugs, Tammy
As a mom of 4 red noters (actually only 3, because they didn't even catch Delaney-LOL), you are SO prepared. It never catches you off guard like it does w/ your first. You will never be reassured by the 'experts' like you were the first time- you will never be as trusting. It's both good and bad. Congratulations on your new addition :) How totally, completely exciting and life changing for all of you.
-Melissa
My daughter Abby passed her newborn screen but was speech delayed and started therapy at 12 months. At some point we started questioning how much she could hear, so we went to the ENT that our pedi recommended, and he deducted that she had fuid in her ears. We got tubes put in her ears at 18 months, and after passing and failing various follow up booth tests, Abby's ENT finally sat me down and said, "do you think she can hear?" and I was like... well I know she can hear some things, but... I don't know. And he said, well, just keep an eye on her and we'll do another test in a few months. NO ABR, No nothing.
MEANWHILE, I had another baby who did not pass his newborn screen. We quickly did an ABR and was referred to a wonderful new ENT. We moved Abby over to him, did an ABR and discovered she had moderate to profound hearing loss.
Now both kids have hearing aids, a great ENT and Audi, and we're happy. But like you, I get upset sometimes thinking about all the frustration we went through and all that time we wasted.
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