MAPping

Maps. Remember those? Pictures on paper laying out the route towards a destination. Canada and I once became acquainted that way. A sense of accomplishment in the use of a map.

Now, options. Are more options equitable to better? A personalized option to select the gender and accent of whom can mechanically verbalize your wrong turn.

Or, perhaps you opt to view the screen on mute as we unmindfully drive to our destinations, multitasking, catching up on voicemails, phone calls or the latest podcasts. Whatever happened to being mindful of the experience? Mindful of the map? MAPping.

MAPping. A term most certainly on an island. For sure, a foreign language. At times I sit and wonder all of the terms important to others that may never cross my path. Why aren’t there more hours in a day? I’d like to learn the terms crucial to your child’s existence. Teach me. But in terms of MAPping…. I S’pose there’s an app for that. Like everything else.

Funny. The irony in my former use of Map my run. Map my ride.

Map my daughter’s cochlear implant.

MAPping is a term used by audiologists in a session where they connect the cochlear implant to a computer to continue programming sound, adjusting input of the electrodes which are implanted in the cochlea. This process is done while the magnet is connected to the skull, sending electrical currents through ear, to identify the levels of sound, pitch, volume, softest sounds the device can detect, comfortable loudness that Valentina can tolerate.

Valentina can only demonstrate what she hears by gestures and nonverbal responses. Quite the challenge, leading to so many questions in terms of what she can actually hear. She can’t tell us! We don’t know. This device is less than 40yrs old. Longitudinal studies don’t exist in the minds of us who studied psychology. Years of data. Research. Nada. Impossible to know if I’m helping or harming the most beautiful creature I have ever or will ever create and nurture. What a mind fuck.

Post surgery in August ’18 and since activation the end of September 2018, we have attended 7 Mapping sessions with our audiologist in Boston, the most recent 4/11/19. 7 months. 5 months of Pre-K and speech.

4/12/19 marked 1yr post diagnosis.

The past 7 months have led to amazing progress, however tonight I am reflecting on 19 days post the last MAPping.

Since that date, Valentina has heard so many sounds that she clearly has never heard, recognized and has begun to connect the dots. But with this has lead to both excitement and concern.

“Tweet tweet”. My V heard the birds the morning after her MAPping, before I heard them. Or, perhaps, I had taken for granted. Their song and Valentina’s ears were there to remind me the words.

I cried that morning.

She heard the birds. She said their sound. She said they were birds. She said “outside”. She looked at the window, covered in white sheers, and pointed. Unpromted. We were late that morning. Like every morning and every day. Sometimes being mindful of the moment means you lose track of time. I would rather be late and embrace sharing in hearing the birds; smelling the roses. Time is only as good as the person using it wisely.

But the “Tweets” turned into, “Trucks”. “Mommy, did you hear that?”, as we drove home from daycare the next night, windows down and trucks passing on by. “Beep”, went the horn of the angry driver that cut off another angry driver on our way home that night. The “beep” was more like a 3 second burst of an anger outburst on a horn being held downwardly in an aggressive manner.

Valentina held her hand over her ears and said, “Mommy, beeeeeeeeeeeeeep….so loud, mommy, what is that?” At that moment I wondered how many times I had held down my horn and had scared a child with new hearing ears learning how to tolerate sound. Yes, that was my thought. Do you ever think that? No, probably not, but perhaps that’s why I’m writing.

I wondered if people contemplate how their response to anger impacts others around them.

The universe has a funny way of answering questions. Pay mind.

The following day, a patient seeking treatment for anger management sat on my couch discussing the awareness they have discovered of others. How their anger outburst impact others around them.

In my practice, I have begun to equate anger with anxiety. Anxiety can manifest into many things, one being anger outbursts. I would like to believe people don’t intend to be walking volcanoes, however have not learned how to disperse their lava or even how to feel the heat. It was then I thought of the ‘A-Hole or Angel’ blaring the horn the previous day, scaring my daughter, leading me to teach her that sound is not a scary sound, but one to cause her to have caution. Her reaction was appropriate. Without his aggression, she may not have known a horn blaring may mean danger. That blaring horn was helpful. That blaring horn and my daughters reaction reminded me my child has not heard that before. Angel. Final determination.

That was scary. But I was more focused on whether or not she was in pain. Was it too loud? Why had she reacted with so much emotion? Was her implant turned on too loud? Am I causing harm to my child?

Who has to think of this on their way home from work?

In session, my mind trailed for a moment in reflection. I was thankful for anger. I was thankful for the ability to understand anxiety and for the ability for my patient to trust in me. Teaching me while I taught. Reminding me that every single sound, emotion and experience is crucial to our growth.

No Rain, No Rainbow.

CRASH!… goes the vase a few days later as we are preparing dinner. Valentina jumps on my leg and begs me to cradle her in my arms as I am trying to bathe her, cook pasta, complete her homework, unpack and repack her lunch, write out spring photos, respond to messages and pay bills. Laundry was somewhere hanging in that mix.

“Mommy, ut oh!, I’m sorry. Broken!” Oh my goodness! She responds, conceptualized, verbalized! Thank you, vase! Thank you wind that blew you over. Thank you absent mind that forgot to add water causing you to be too light to withstand the wind. Vacuum. Oh that Vacuum. Plug it in, and Valentina runs out of my arms onto the couch curled in a ball begging me to stop. “Mommy, too loud” as she looks at me with scared eyes. But there was the glass and there was my girl and there were her ears.

“No, mommy, no bath….no mommy, no hot dog, no mommy not tired, no mommy stop. stop talking to me. stop asking about my day… ” Typical 3.5yr old, right? No! Exactly why this is unexplainable. Mirrors one, but has only heard for 7 or so months trying to make sense of sound. Would you hold your 7month old to that standard? Her vocabulary rose in 7months from a 12mo old to 18-24 month old.

She’s 42 months old.

“Mommy, not working, as she points to her hearing aid…for the 3rd time, taking it out and cleaning out the wax….”All better, I fixed it”, says my V. Yes, baby, mommy fixed it. “No I fixed it”, she says.

Valentina, did you practice the letter “N” at school, “No mommy”. Hmm. No. That starts with N. Ugh. She will be 4 and can not tell me about her day.

Sometimes, I feel like the patience I give to her takes every ounce of every particle of my being when I want to burst into tears and just want to have a conversation with my child.

As the past two weeks have progressed, her sleep has regressed and she has begun to increasingly exclaim “No”. “No, mommy, not the black sweater, the white one. Not the dress, the shirt. No, I’m not putting my shoes on. Mommy, help with my jacket, but give me water at the same time…and did you hear that mommy?… Mommy, answer me, repeat me, but why haven’t you zipped up my jacket fast enough? Mommy, too loud, mommy stop that…”

“Mommy, did you hear that?…” as she is jumping up and down and a candle holder lighthouse door is opening and closing, making the faintest sound.

Hear what?! Put your foot in your PJs!

“Mommy!… that!” As she jumps again, throwing off her pjs and running to the candle holder opening and shutting the door 15xs. “Yes, Valentina, I hear that”, at 7pm… Valentina, it is time for dinner and bedttime. “OK, Mommy.”… three minutes later, sirens, “Mommy, did you hear that?, Fire!… as she runs to every window…

Three loads of laundry, lunch to be packed, bills to be paid, texts to respond to… and now my child is on the floor crying because she wants ice cream, not a bath but gets interrupted by the neighbor putting the key in their door. “Mommy, what is that?”….

So I rant in this blog. Because that is the way the past two weeks of mothering my child has felt. One big rant of me trying to balance being a mom.

Trying to figure out if her latest MAPping was made too loud. Conversing with audiology and school. Navigating through what to encourage and what to discourage. I work somewhere in between.

A tough balance in attempting to redirect V, while trying to support her newfound sounds. Trying hard to manage a schedule and time, while being mindful of the moment. Emailing providers, attending speech therapy and praying this device is not harming my child. Trying to manage everyone’s discomfort to my child’s discomfort. Trying to help them make sense of what I can barely make sense of. Trying to help my child make sense of a world that will never make sense, even with the greatest of GPS’s and most colorful MAPs.

#mapping #audiology #cochlearimplant #advancedbionics #phonak #hearingloss #enlargedvestibularaqueduct #singlemom #toddler #parenting #blogger #learning #journey #sound #deaf #asl #map #cochlear #mommytomyv #bostonchildrenshospital #speechtherapy #birds #sound #patience #mommyblogger #mindfulness #educate #angermanagement #beep

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