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.

 

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