Hearing Birthday 09-20-2018

9/20/2018 Following Initial Activation. Valentina passed this painting many times. Today, she stopped, noticed the I Love You sign and seemed to want to hold hands… touched my heart.

Seventeen Months.

Seventeen months ago, if you had asked me to celebrate your child’s “Hearing Birthday”, I may have looked at you with confused eyes and an inability to understand the importance of such date. Even more confusing if I was also asked to recognize TWO Hearing Birthdays, the first 05/21/2018, the day my child received her first set of hearing aids.

But today, 17 months post diagnosis, I sit in solitude starting at my screen trying my best to sort out how to celebrate such a day for my child. Perhaps, like every other milestone in her almost 4 years of existence, this celebration occurs in the privacy of our own home, with her mommy to be the one showing her how to celebrate such an important day in both of our lives.

Deafness creates a silent world. Both literally as well as figuratively. To the outside world, my daughter can now “hear”. “Look at how far she has come.” The outside world is so far removed from the ins and outs of daily life and our daily hurdles. It has become quite clear the impossibilities to attempt to explain. An explanation makes little difference. Live in our world 24/7 for 30 days.

Initial activation and Mapping session. 9/20/2018

Often, I sit and wonder how parallel it feels to treat patients struggling with their mental health, whom go about their days as if everything is A-ok. Perhaps that is life and we just don’t speak to one another with enough transparency. Such a shame.

But, in relation to my daughter and similarly to mental illness, you may not visibly see the struggles. Things today compared to two years ago may seem as though life and our world has moved in a direction high above where we may have been. There’s truth to that, as equal a fallacy.

Just last night, I woke to my daughter at midnight in my bedroom using her stool to attempt to reach hear hearing aid and implant. Was this because she wanted to hear at midnight? Did she want to hear how her mommy may react to her being awake? Did she want to tell me something and need to know she could hear my response? Needless to say, after I finally snuggled her back to sleep, I lay awake.

Our Audiologist at Boston Children’s Rocks!! V was never quite a fan on Deaf Melody!

Her Hearing Birthday on 9-20 signifies three weeks following surgery and the day her implant was activated. What is activation? Activation is the first day of the lifelong times she will be hooked up to a computer with her ear processor attached to a monitor to assess her response to sound.

Every frequency from low to high was tested and her mapping and activation was dependent upon my 2yr old sitting still, with a wire connected from her head, plugged into a computer. It was dependent on our ability as a team to keep her engaged in every game possible to gauge her reaction to sound. The goal; to keep the volume the lowest possible amongst all frequencies to ensure she is responding to sound on all frequencies. This took preparation and continues to for every mapping and appointment we have had since that date. Each one more important that the previous, as every tweak in her programming may impact her ability to hear sound and aquire access to hear words, sounds and noise to produce spoken language.

There have been mappings where I was sure her implant may have been programmed too loudly. But quickly I realized, no, this was her 1st time ever hearing a “loud”noice. An airplane, chainsaw, lawnmower. She’d react in a way I hadn’t ever been exposed to. So we both learned to adapt and name each sound. Teaching her loud sounds are loud for both of us.

Mappings where is seemed clear she was not able to access sounds crisply to produce clear words. Still unsure how many years of “approximations” I may endure in reading on her IEPs.

Valentina not only is required to learn what a sound is, distinguish between sounds, what a word is, the meaning of a word, phrase, direction, sentence…, but is also then asked to learn how to produce the word with her voice. This requires constant correction, repeating and postive reinforcement to help guide her in knowing it is ok to not sound correct or on point the first 100 tries. We repeat words, phrases, sounds, explain noises every minute of every day we are together.

In reflection, the celebration of her “Hearing Birthday” is bittersweet. I sit tonight in reflection, recognizing I again am the only one in this universe that remembers this date. I again am the only on in her world who knows just how freaking difficult every single day can be to try to help guide her to learn how to speak. And so, I sit tonight, on the eve of her Hearing Birthday as I begin an online ASL class. That is my gift to my daughter. We will be bilingual. We need to be bilingual.

We began learning ASL back in May 2018…

Valentina is incredible in terms of her resiliency and ability to cognitively understand, retain and repeat what she learns. That is not by accident.

You think you’re exhausted at the end of a day? Putting my exhaustion aside, when I feel exhausted I read another journal regarding “listening fatigue” in deaf toddlers with implants. Her hearing birthday marks the start of a lifelong marathon. Thank goodness we have been blessed with the environment to be in a controlled quiet setting, conducive for hearing, listening and repeating sounds. Thank goodness we continues to live in our quiet world.

One of a few sedations… A reminder of the emotional battle and how strong she is.

For, there are many nights I sit in silence, wondering how on earth silence has become a blessing. There are many nights while giving her a bath, I am reminded she is screaming because she tells me she can not hear me. It is in those moments the tears are fought back. It is in those moments I wish so deeply she had others who celebrated in her progress. In our progress. But then I remember, all that really matters is that I have a daughter who knows her mommy greets her with a smile. A mommy who wonders how the energy will be produced to endure another sleepless night.

I suppose her hearing birthday is a celebration of our journey. Our love. A mother and daughter’s bond that truly is like no other. The pride we each hold in our hearts while speaking of one another is a celebration. Beyond her ability to hear, that is a blessing that will never be replaced, nor needs to be shared with anyone.

To my beautiful Valentina, on your Hearing Birthday, I pray for many things. I pray that you will alway keep your full shining smile and bright spunky spirit. I pray that this world will never let you down, but if it does, I pray I instill in you the strength to overcome. I pray you never expect from anyone and accept how to do things on your own two feet with your own hands, knowing your mom will be by your side from now until my dying day. I pray that you never lose your stubborn, do it yourself, independent little attitude and I pray that my attempts to never quiet that spirit brings you to higher things in life.

3wks following diagnosis we ran a 5k to support the deaf community.

Someone dear to me has parents whom are deaf. His words were as follows. “I often wonder what they may have been if they didn’t lose their hearing in this hearing world. I often wonder what and who they may have become if they could hear.” How interesting a thought to ponder. My take away?… You, my sweet child are you and wouldn’t be you otherwise. You are kinder than most people I have met in my lifetime. You are also brave, fierce and are going to be who you will be to help this world understand layers of greatness.

You have made me go insane on a daily basis..ha. However, you also have found a way each and every single day to remind me just how beautiful your little soul is.

“Mommy, I so happy to see you. Mommy I love you. We both Love. Mommy, hold my hand. Mommy, that’s my mommy. Mommy, I sorry. Mommy you make me happy. Mommy I have fun.”

For every internal mental breakdown, being your mommy is hard. Being your mommy is also easy. Because, well, you’re Valentina. Every single day you remind me the environment you are raised in is healthy, happy and positive. I thank God for you and I thank God to have ginven me the strength to get us to a safe place in which you have thrived.

May we together move forward in our second year on your hearing escapade and tackle each milestone and hurdle with the grace of your sweet voice.

I love you

9 thoughts on “Hearing Birthday 09-20-2018

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  1. Thank you for sharing this part of your journey with V. I think you are both courageous as you pursue a life of untold possibilities. I walked a different sort of journey with my daughter, and I thank God for bringing us through. God bless you both! ♥

    Liked by 1 person

    1. Thank you so much for taking the time to read our blog, as well as for your kind words. It means so much you shared you can relate with our journey. You and your daughter certainly must also carry great courage and love. Bless you both as well 💛🤗

      Liked by 1 person

    1. Thank you so much for reading part of our journey. Truth be told, we definitely take for granted what we may not experience/ understand. I may never have taken the time to learn about hearing loss, speech etc…had this not been my daughter. I’ve learned to try to be mindful of all different disabilities and am more conscious and can empathize when I see another mom gracefully struggling to care for her own child. 💛🤗

      Liked by 1 person

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