Deafness, Gigi

Re-implanting, the Guilt that Comes with Another Try.

On Friday I made a call to the surgery scheduler for the Otolaryngology Clinic at our local children’s hospital.  We have made the decision to try to implant Gigi’s left cochlea again.  She called back today.  We are on the schedule for re-insertion of a left-sided cochlear implant on March 16th.

Yes, after everything Gigi went through, after nearly dying, we’re going to try again.

I understand what a controversial decision this is.  I know what it must look like to someone who is on the outside looking in.  I’ve typed this 18 times, some of the first drafts of this post were defensive and so angry, some were apologetic, others were just sad.

I’m all of those things.  I don’t know that I’m making a choice that honors what Gigi will want in the future. Our goal for Gigi has always been bilingual and bicultural, but that is OUR goal for Gigi.  I don’t know what she will want.  All I can do is study the research.  So much research.  Research about literacy.  Research about social isolation.  Research about family relationships between hearing and Deaf siblings.  I have found it and read it all.

I’ve made the best choice I can for a child who is caught between two worlds.

The hearing world has no idea why this is such a controversy.  You’d want to “fix” your kid if something was “wrong” with them wouldn’t you?  The Deaf community wonders why I adopted this child in the first place if I view her as someone who needs fixing?

These are valid questions.

My answer lies somewhere in the middle.  I don’t think of Gigi’s deafness as a disability.  Much like I don’t view Bowen’s Dwarfism as a disability in the broadest sense of the word.  Her deafness, his Dwarfism, neither will have an effect on either child’s life expectancy.  But, the world wasn’t made for either people who can’t hear, or people of short stature.  They struggle so badly.  Both of them have, and will continue to, be viewed as less than.  I am only looking to give them tools to help level the playing field.

A cochlear implant is to Gigi what rods in Bo’s legs are to him.  Bo has curving in his legs.  He will move easier in this world if we, when it is needed, straighten the bending in his legs.  I am not looking to lengthen Bowen’s limbs (yes, that is a thing).  I am merely looking to help him walk easier in the world.

If I can give Gigi some access to sound, this will help her walk easier in the world.

Isn’t that what every mom wants for her baby?

–FullPlateMom, who will delete all negative comments or references to “cultural genocide.”

Deafness, Gigi, Tess

Full Circle

One week ago, Gigi, our Deaf 4 year old, had a Cochlear Implant (CI) inserted on the left side of her head.  I didn’t write about it here because this decision comes with some controversy.  The Deaf community often feel this is an attempt to “cure” your child’s deafness.  It was not.  That is all I need to say about our choice.

Our Deaf daughter’s deafness needs no “cure” and a CI certainly isn’t one anyway.

I took this picture of her at our Murder Mystery NYE Party.

She looks fabulous, right?

Her left eye is a little swollen and red though.  By the next morning, it was totally red and bruised, like someone had punched her.  We called her doctor, he said he wasn’t too concerned.  A monitor goes over her eye in surgery.  He thought maybe that had bruised her?

Then she began to complain of a severe headache.

Hmmm…I was told this was okay?  But it didn’t seem that way?  So, I made the decision to make the 90 minute drive to the large children’s hospital we had chosen to put the CI in.  Tess had an appointment there the next say anyway.  FullPlateDad and I decided Tess, Gigi and I could get this bruising checked and then spend one of our last night’s of winter break in a hotel, go to her appointment the next day and come back after a fun girl’s night out.

They took one look at Gigi and rushed her to the Operating Room.

She was bleeding from her implant site into the space between her scalp and her skull.  The surgical team removed A LOT of blood.  Over 100cc, hence the headache.  We were told we would stay the night and then likely go home.  This wouldn’t occur again, she should be fine.  The implant seemed fine.

At about 2am, while we were sleeping with Gigi in her hospital room, Gigi woke me by banging her hand on the side rail of her bed.  She looked exceptionally pale, so I went to check on her.  She told me “Feel sick” and then “Want water.”  I turned to get it for her and when I turned back, her eyes were unfocused and her whole body was clenched.  I called her name, momentarily forgetting…Deaf.  Then I began to lightly apply pressure to her sternum to get her to focus on me.  Her eyes rolled back into her head.  I pushed the button for the nurse.  She stood there for a moment and simply watched Gigi seize.

Gigi has severe Congenital Heart Disease.  We can’t just watch her seize.  I knew a seizure was going to lead to larger issues.

So, I called the Rapid Response Team myself.

I explained the situation, and Gigi’s history, to the 18 people who now stood in her room.  “She’s either bleeding into her brain now or she has an overwhelming infection.  Either way, time is of the essence.”  I told them.  “You choose, CT or lab draw, but…let’s go!”

They seemed skeptical.

They moved though.  They moved with the skill of a group of people who have danced together before, but are learning new choreography.  They chose CT, so we rushed her there.  Turns out, that was a good choice.  Gigi was bleeding into her head again.

I looked at the little pull out bed where just 20 minutes ago I had been sleeping, not soundly, but well.  A little face peeked out at me from under the blanket we had brought from home, thinking we would use it at our girls night at the hotel.

“Mom, is my Gigi sick?”

“She is, love.”

“They’ll fix her.”

She said it with total conviction.  She wasn’t trying to convince herself.  She KNEW IT.

Faith like a child.

A nurse with a man bun came to get me from CT.  That’s all I remember about him, man bun.  He said his name, I’m sure, but it didn’t register.  There was a problem.  Gigi wouldn’t be coming back to this room.  Grab everything you can, we need you in the PICU.  I grabbed my shoes, and slung Tess onto my hip, leaving everything else behind, and we RAN.

I was greeted by one very crowded room and an ICU attending who was obviously running a code.

“Very concerned.”  “Blood pressure 40/20 in CT.”  “Cutting a central line.”  “Epinephrine drip.”  “Call your husband.”

I did.

I told FPD that, once again, there had been a change in the dance.

The nurses who weren’t busy with their own patients took Tess to the nurses station to color Gigi pictures.  As she walked down the hall, she turned back to me.

“I know my Gigi’s going to be okay, Mom. You found the BEST doctor and hospitals for me. Now they’re going to save Gigi. I know they will. Tell her to FIGHT, mom. Tell her like you told me.”

I didn’t even get to say anything.  I was ushered into the room and asked to help.  Gigi was awake and scared.  They needed me to explain to her that they were going to poke her now to give her medicine to make her feel better.

I didn’t though.  None of that was as important in that moment as what Tess had told me to tell her.  Tess, the one who had named her sister before we even knew who she was.  Tess, the one who insisted that this was HER Gigi and that we needed to go and get her from China.  Tess, the one who wouldn’t even consider the possibility of losing her now.

Tess, the one with faith like a child.

As I stood over Gigi, her blood pressure falling to almost nothing, people cutting lines into her, but her eyes still looking up me, I simply signed to her.

“Tess told me, FIGHT, you MUST!!!”

Swear to God, Gigi nodded.

They kicked me out then.

Gigi made it.

After another harrowing trip to the OR, some damage to her heart from the lack of blood flow, and a surprise diagnosis of a clotting disorder, they removed Gigi’s CI and she is in the Operating Room as I type having her first stage of heart repair.

Her heart just couldn’t wait any longer to be fixed.

Our hearts can’t wait to kiss her face again.

This is a dangerous surgery.  Not the repair in and of itself, that should be okay, but Gigi’s blood doesn’t clot normally, and she is going into this feeling fragile.

Again, we ask her to fight.  Fight, Gigi.  FIGHT.

–FullPlateMom, who needs her tiny precious Gigi to just keep swimming and warrior on.

 

 

Deafness, Gigi

One Year of ASL

One year ago today, Gigi landed in the U.S. and met her brothers and sisters.  For those of you who haven’t met Gigi, she is Deaf and blind in her left eye.  Prior to coming to our family, Gigi had no language at all.  We introduced her to American Sign Language (ASL).

On this day, one year ago, our kids jumped right into the long, crazy journey of giving Gigi language via signing.  Gigi’s native language is now ASL.  She can tell you all about it now.  ‘Sign, please.’  She’ll ask you to do it now, when she’s not understanding what is happening around her.

In our home, equal access, always.

Because of this quest for equal access, we have had to change up some of our holiday traditions in fantastic ways.  In our home, there is a tradition of reading The Polar Express at Christmas time.  This month, the kids were gifted the movie.  They’re watching it right now.  It was time to create equal access for Gigi by signing the book first, so that she understood the story.  I am not skilled enough to interpret this book her.  So, we turned to the internet.  ASL Nook has many, many wonderful Christmas stories in ASL.

This is Gigi now, with one year of language.  She is watching the story signed to her, looking at the matching book in front of her, and signing right along.


Now she’s watching the movie with her sisters.  We have a couch, right behind them.  It’s empty.  They always choose to sit with Gigi on the big bean bag pillow we got her so she could move closer to the screen for a better view.

I credit all of Gigi’s siblings with where she is today, cuddling with the sisters she loves so much, wearing the shirt she wore when she came home.  We really do rise by lifting others.  Gigi has lifted us higher than we could have ever imagined.  Thank you, Gigi.

–FullPlateMom, who is so grateful for the gift of ASL, and large families.

Advocacy, Deafness, Gigi

An Everyday Fight

This is my daughter, Gigi, for those of you who aren’t familiar.  She is Deaf and has sight in only her right eye.  The vision she does have in that eye appears to be central only.  She misses things in her peripheral visual fields.  She falls sometimes because of it.  She missed out on learning any sort of language, due to her deafness and institutionalization in China, until she came to us nearly 10 months ago.  She has a Congenital Heart Defect that falls into the severe category.  This is likely what you’d see if you read through the short summary at the beginning of her medical chart.

Here’s what I know to be true.  At last count, this tiny dynamo knows how to sign over 25o things.  She puts those 250 signs into combinations of three, and just last week four, sign combinations.  She understands 98% of what is signed to her.  She has started school in the local public school and is able to come home and tell me what she did during the day.  She tells me about her friends, because just in the last month, she learned what that word truly means in a classroom full of kids who accepted her as simply one of them.  She’s a kid who loves to play, nothing more, nothing less.  She is the sister of ten doting siblings (well, not Cate, but let’s not spoil the moment).  She is kind.  She is compassionate.  She has a laugh that can light the sky.

When I describe her, she becomes undeniably worthy, right?  You’d have to be an inhuman monster to decide she isn’t worthy of what she has been given over the last almost ten months that she has been part of a family.  Our humanity is defined in the way we care for people like my daughter, people who have been given such a rough start to life that the odds seem insurmountably stacked against them.  Deaf AND visually impaired? No language? A broken heart? No family?  We become human when we care for her.  We become human when we cry about her life mattering despite her label of ‘disabled’ and ‘orphan’.  We become human in the moments that we spend celebrating her entrance into forever with a family who will fight for her.

Because, I do.  I fight every day.  When she came home, I fought to get her hearing loss correctly diagnosed, because the label ‘retarded’ had been attached to her file.  I fought to learn a foreign language so that she could tell me her wants, her needs, her thoughts, and someday, her dreams.  I fought to get her tiny broken heart properly monitored, and I’m sure I’ll have to fight to have it repaired.  I fight for interpreters.  I fight IEPs.  I fight those who judge, underestimate and belittle.  Every day I fight against the people who are supposed to be helping her.

Earlier this week, the children’s hospital she was being seen at tried to take back her hearing aids.  Not because her state-sponsored insurance plan doesn’t cover them, but because they were upset we’re seeking the second opinion we’re legally allowed to have for her.  We have now waited nine months for a Cochlear Implant for her that seems light years away.  We have fought through denials of therapies that could have really helped our girl.  She’s been seen at three world class medical centers and getting her records from one to the other has been a colossal time suck for me, as her mother.

Today, as I was being told that the MRI of her brain we have scheduled for tomorrow, the one that involves Cardiac anesthesia, and is combined with a dental exam, eye exam and vaccinations, is being cancelled because insurance approval couldn’t be secured.  It was suggested to me that this was due to her health insurance, a plan that is supplied to her because she has legally been declared disabled.  Maybe if I had a private policy this would be easier?  In other words, if I paid more.

That, right there, is the reason I will never fault anyone for not wanting to parent a child with special needs.  We do it all the time.  We fight.  We advocate.  We adore our kids.  But, what I experienced today is par for the course.  If her life matters as much as any other child’s.  If we are pro-life.  If we are pro-adoption.  If we are going to tell women they should continue to parent their children, even when they have major long term needs, then we need to do better.

My daughter deserves quality health care, no matter how much money we have.

–FullPlateMom, who doesn’t understand why this needs to be so difficult.

 

Deafness, FPD, Gigi

Emerging.

There is a point in every single one of our adoptions that our children begin to emerge as people.  It’s an odd feeling during these few months at home, almost like a fog.  We operate in a constant state of haziness.  We’re strangers when our children arrive.  They don’t know us, we don’t know them, and lots of times, they don’t know themselves.

Gigi didn’t know herself.  I know she didn’t.  I often try to put myself in her place during those years she spent in an institution.  Locked inside herself, no way to communicate.  I think in English.  I have a constant internal monologue going.  Don’t we all?  “Oh, man, the laundry.  I forgot to change it over to the dryer.  The kids school supplies, I need to find time to buy them.  Tuesday? Yeah, I think that’s free.  Put it in the Google Calendar before you forget and they go to school with empty backpacks.  Everyone will assume their backpacks are empty because you’re too poor to buy the supplies.  How are you going to pay for those?  You owe Bowen tooth fairy money too.  Damn.”  Yes, my inner monologue comes with negativity and curse words.

Joe (aka FullPlateDad) once told me that he felt truly bilingual (he is an interpreter) when he began to think in the language he was attempting to master.  Joe’s inner monologue occurs in Spanish.  That made me wonder, in what language did Gigi think?  She had no language.  So, what did her inner monologue sound like?  What does it sound like now?

Gigi on the TrainI can almost see the wheels turning in her head.  We were riding the train at the zoo in this picture.  A few seconds later the train began to move and she looked up at me.  Her face registered pure excitement.  Then her hands began to fly.  “Train! It’s going!”

She was thrilled.

And she was able to tell me all about it.

The fog is lifting.  I am beginning to see her emerge.

And, she is beautiful.  

Someday, a very long time from now, when all this is done and I’m old and gray, I know I’m going to look back at these moments, the moments when the fog lifted, as some of the most amazing moments of my life.

I am so profoundly lucky to get to witness this.

–FullPlateMom, who can’t wait to see who she becomes when she’s finally truly done becoming exactly who she is.

Deafness, Gigi

I Just Want to Talk to my Daughter: The Choice to Implant Gigi.

When Gigi arrived home, she arrived into our home where we were ready to sign.  We had practiced, taken college courses, we were ready.  For a very long time now, we have been trying to figure out what the status of Gigi’s vision is and will be in the future.  We sent her through a very painful procedure on Monday to try to get more answers.  We wanted to know, without a doubt, whether or not she’ll be able to see well enough to sign, for now, and for the future.

We didn’t get the answers we had hoped for.  We had hoped the retina of her right eye was perfect.  That would rule out progressive vision loss in that eye.  It’s only 70% of normal.  They can’t tell us if that 70% is permanent or if someday Gigi will be blind.  It’s hard to have gone through Monday’s procedure to feel no like we are no closer to answers than we were before.

We have talked about the controversy of a Cochlear Implant before.  She won’t be totally deaf, but she won’t be hearing either.  We debated if this was something we wanted to choose FOR her.  This week, we made that choice.  It was ours and ours alone.  We won’t apologize for it.  In the next 10-12 weeks it’s our hope that Gigi will have surgery for a unilateral Cochlear Implant scheduled.  We will only implant her left side at first.  Our hope is to give her some sound awareness for emergencies (car horns, sirens, alarms, etc), but to maybe give her some access that will help her with literacy.  If we need to teach her to read braille, this will help her.

It is not our goal to have Gigi learn to speak unless SHE tells us she would like to.  So, we won’t be working with Speech Therapy outside of what is offered in school.  For our hearing friends who find my having to interpret for her “a barrier”, well, sorry.

When Gigi came home, the clip below, from a VERY old movie (this came out my freshman year in high school), depicts very accurately what Gigi’s first few weeks at home were like.  Can you imagine?  People in China assumed she was “retarded.”  Her adoption file said as much.  This was a little girl locked inside herself.  A little girl who now tells us so much, and without ever actually saying a thing.

This mother, in this clip, summarizes very well how I felt when she came home.  We are NEVER going back there.

I want to know what she thinks.  

I want to know what she feels.  

I don’t care what it costs.  

I don’t care what the stupid doctor says is right or wrong.  

I want to talk to my daughter.  

Using ALL the tools available to me, both American Sign Language and a Cochlear Implant, together, give me the best chance of ALWAYS having that.

-FullPlateMom, who knows that so many things in life aren’t either/or, lots of times, they’re both.

 

Deafness, Gigi, Tess

No, I Didn’t Sign On For This.

Yesterday, I sat in the Pediatric Geneticist’s office at our local children’s hospital.  I listened to the Geneticist tell me what his opinion was for the future of Gigi’s vision and I thought to myself…

I didn’t sign on for this.

We’re riding a rollercoaster with Gigi’s health.  We’re dipping back down into one of those 90 mile an hour wicked curves.  It is possible that Gigi is going blind.  We were told maybe, then we were told no, then last night, I was told ‘possibly’ all over again.  Up and down.  Up and down.

I didn’t sign on for this.

I thought it as I sat there.  I signed on to learn a foreign language for her.  I signed on for the possibility of future heart surgeries.  I did NOT sign on for deaf/blind.  No one ever mentioned that possibility to me.  It was never discussed in the medical reviews we did.  I didn’t know what Usher’s Syndrome even was before she came.  And yes, I am a pediatric Advanced Practice Nurse.

This was not the way this was supposed to go.

How did know one in China know? I wondered.  If this is really happening to her, and they’d had her since birth, they MUST have noticed her vision worsening.  Why not say that in her file?  Were they afraid I wouldn’t take her?  What the hell?  Whose fault is this? Who can I blame this on?  Because this sucks.  It’s painful, and life changing, and horrible.  And, I’m pissed.

And, I felt this way with Tess.

I did not sign on to bring home a child who was dying.  What will this do to my other kids? What about them? There were supposed to be countless options for her heart.  Nowhere in her file did it say lung damage.  They probably wanted to put the burden of caring for her on me.  They probably lied to me so I would have to deal with all this pain.

All of these things, all of these horrible things thought in the first 30 seconds of hearing life altering news.

I’m going to forgive myself for them all.

Because, I absolutely DID sign on for this.  

It’s my girls that did not.  

No one told Gigi that we would unlock her world with an amazing visual language that she might lose.  No one told her that to figure out if she is going blind it would involve poking, and prodding, and painful tests. No one told her that she would need at least two, if not more, open heart surgeries to correct the defects that plague her heart.  No one asked her about any of this.

They asked me.

China asked me, will you come?  And I said yes.  I said yes to ALL OF IT.  Even what wasn’t known.  And, I know better to think that any of this was purposely withheld from me.  Was it investigated completely?  No.  But, here, in the U.S., where she is my sole focus for medical care at each and every appointment, where we have specialists galore who has unlimited resources, they still can’t figure her out.  She was not the sole focus in an orphanage of 400 children.  She couldn’t be.  They did what they could.  Then, they asked me to pick up the torch and run.

I am going to forgive myself the selfish, mean spirited thoughts that come with the shock.  I am going to give myself the grace to have a sad day.  Then, I’m going to hug my babies close and jump back into the frey where I will fight on for her.

–FullPlateMom, who absolutely DID sign on for this.