Being an Ordinary Parent to an Extraordinary Child

Last week’s post was a tribute to the wonderful woman who was my Mother.  This week, I am writing about my own experience as a mother to the wonderful woman who is my daughter.  This is a long post so I hope you will indulge me.

I am writing this in a hospital room.  Deanna has been here for two days.  She’s had an MRI and an EEG and they’ve taken multiple vials of blood.  After all this, they are still not sure what is wrong.

Her symptoms point to a condition in its own right – Dystonia – but this can also be a symptom of other conditions, notably Parkinson’s.  So far, the Parkinson medication is not working, but these things take time.

An effective treatment can’t get here soon enough for me.  There is nothing worse than watching your child suffer.  I have had to watch her suffer far too much in her nearly 21 years.

A week ago this past Wednesday, Deanna was in the ER because she was experiencing what looked like a seizure.  This led me to take the next day off in order to take her to a see several physicians.

The first one was a neurologist, a new specialty to add to her entourage.  The neurologist was stumped and proceeded to order up some tests in order to determine a diagnosis.  After enduring the glacially slow authorization from the insurance company, she wasn’t able to have the MRI because she had an episode during the intake process and could not hold still.  Thus, the hospital.

The second doctor is one with which we are very familiar – Deanna’s nephrologist (kidney specialist).  My daughter was born with a single kidney.  She has chronic hypertension, for which she takes medication in order to keep it under control.  The problem she is currently experiencing is raising her blood pressure, so we wanted to make sure it wasn’t something to be concerned with.  In this case, it was a fairly routine visit.

Appointment concluded, we dropped in on my son, who works just down the street from the doctor’s office.  While visiting with him, his little sister had her worst episode up to that point – right leg shaking violently and her foot banging on the floor while her arms hinged shut and her fingers and neck contorted.  It was not easy to watch, but that was all we could do. It lasted about a minute – maybe a minute and a half.  Felt like forever.

As I drove back home, I said to her “Well, the good news is that this is not life-threatening.  If you were in danger, they would have put you in the hospital.  But I know it hurts and it is frustrating and scary not having control of your body.”

And my daughter, in her halting speech (also affected by whatever this is that she is suffering from) said to me “I am not afraid”.

My daughter has an uncommonly strong spirit, one I have always guarded.   If what I saw happening to her were happening to me, I’d be plenty scared myself.

Deanna -confronted with medical mysteries and challenges all her life – has always faced them with strength, determination, and even a sense of humor.  And a presence of mind that is often startling.

Earlier in the day, at the neurologist’s office, she had to use the bathroom.  She was having difficulty getting the words out – even though in her mind, she could “hear” herself speaking just fine.  When the words couldn’t come, she called on a skill she learned in high school – American Sign Language.  As soon as she held up her left hand and I saw her sign the letter “t”, I knew she needed something.  She later explained that in addition to being a “t” it’s also the sign for “toilet” – live and learn.

I accompanied her to the bathroom, thinking she’d need help getting her jeans – belted across hips – off and back on.  Silly me – despite her contorted fingers, she unbuckled her belt, unbuttoned her button and unzipped her zipper without any help from me.  When she was done, she put herself back together again unaided.  I was feeling rather useless.

I don’t know why.  It’s happened before.

She was 5 years old when we discovered she had a single kidney.  When she went to the pediatrician for her check-up and vaccinations for Kindergarten, a urinalysis revealed a UTI (urinary tract infection).  After a week of antibiotics, the infection persisted – so off to the hospital for tests.

About a week later, my husband called me at work and left a Voice Mail.  He’d gotten the test results.

I love my husband, but he is deliberate, methodical and detail-oriented where I am direct, blunt and concise.  I prefer the Reader’s Digest version – he always gives me “War and Peace.”  After listening to him describe, in excruciating detail, Deanna’s condition – kidney valve reflux – his final sentence shocked me to the core.

“And by the way, she’s only got one kidney.  Guess you’ll be calling me back!”

Our daughter had surgery a few months later to move the tube that transports urine from the kidney to her bladder.  Reflux is when the valve is not working correctly, allowing urine to splash back up into the kidney from the bladder.

Where most people have two kidneys, our daughter had just one, and it had been working overtime for 5 years trying to keep her system clean.   With this surgery, we thought everything was fine.  Deanna repeated Kindergarten because of developmental delays (which we attributed to her physical issues) and went on to first grade.

Then she began experiencing what sounded like migraine headaches.  So we chased migraines.  For the next four years!  Deanna began to miss school, and she although her appetite was not affected, she became clinically anorexic because often, she could not keep her food down.

But she never stopped making the attempt to attend school, and she never let her headaches prevent her from playing with her friends or doing anything a kid her age would normally do.  Even when she got Bell’s palsy in May of 2001, which paralyzed the left side of her face for three months, she continued to live the life of an average 11-year-old girl.

When she entered 5th grade in the fall of 2001, we had concerns that she was falling behind.  In order to get her Special Ed services, she needed an evaluation.  Part of that consisted of physical tests (hearing, eyes, etc).  I had noticed over the summer that she was holding her books very close to her eyes, so I’d already made an appointment with the eye doctor.

At that appointment, the eye doctor could not get a reading and asked that we come back so he could dilate her pupils and take a closer look.  In the meantime, the school nurse called and we had an extensive conversation about Deanna’s medical history.

Two days later, I got a call from the school nurse.  Deanna’s blood pressure was 250 over 180 and she needed to be in the ER immediately.  This woman, the nurse at my daughter’s elementary school, was the first medical professional that looked at Deanna as a whole person.  She was suspicious and acted on her hunch – and thank God, because Deanna was close to a stroke or heart attack.

After getting past the triage nurse – who insisted on talking to “the patient” and then sent us to the waiting room where we sat for over an hour – we spent all afternoon in our local hospital ER.  When their efforts to lower her pressure went nowhere, we were referred to Children’s Hospital LA, where – on the morning after she was admitted – the chief nephrologist told me that Bell’s palsy was a primary indicator of malignant hypertension.

I wanted to kill someone.

Instead, I observed the other patients and found gratitude.  Deanna’s first roommate was an infant whose life was already over.  Born with complications, the inserting of a shunt had caused extreme brain damage.  This baby, 6 months old, would be on dialysis for the rest of his life.  His parent’s lives consisted of working in shifts so that he was never alone in the hospital.

Deanna spent 4 days in the hospital.  It took 2 days just to get her blood pressure down to normal.  Her second roommate was a 16-year-old who had been rushed to the hospital because a donor kidney for a transplant had become available.  This young girl had been there before – the whole staff knew her.  She’d been celebrating her 16th birthday when she got the news.

Then her father, and a priest, arrived.  There was joy and sorrow.   The joy was getting a kidney.  The sorrow? The donor was her mother – who had just been killed in a car accident.  I could not begin to imagine the emotional state of her father – a man who was going to see his child have possibly life-threatening, yet life-saving surgery – and discussing a funeral with his priest.

I thanked God many times during those 4 days – and many times since – that Deanna didn’t have anything more horrible than high blood pressure, controllable with medication.  She had some heart damage and hypertensive retinopathy due to the length of time her condition went undiagnosed, but all that healed within a year of getting her blood pressure under control.

Last week, when I returned home from a day of visiting doctors with yet another mystery illness, I got there in time to tune into my favorite television show, “The Vampire Diaries” and during the episode, the following line was spoken:

“It’s no easy task being an ordinary parent to an extraordinary child.”

I cried.  I’d spent the day with a daughter who showed extreme grace under pressure, and I felt so inadequate.  I was doing everything I knew how to do and nothing made a bit of difference.  My child was still suffering, but looking at her most of the time, it would be hard to tell.

So I’m writing this from yet another hospital room.  Deanna is so familiar with these places and routines, no one needs to tell her how to operate the bed, and she doesn’t mind when people come in at all hours of the day and night to check her vital signs.  She is gracious and in great spirits.  She’s bonded with a wonderful nurse here and after the last episode, gave her an enormous hug.  The nurse – Amy – beamed.  It is hard to resist my daughter’s prodigious charm.

Last night, she had two episodes, one lasting 6 minutes, the other 8.  The muscles in her legs, arms, hands, neck, head, torso, and tongue contract and cause her to move in odd ways that look like a seizure.   Her limbs flailing wildly, Deanna is completely bound by what her body is doing and unable to control it – but conscious through it all.  When it is over, it’s as if she’s run 5 miles at top speed.  I write this as she is sleeping – the one time I can be sure – so far – that no episodes will disturb her.

I do not know why my precious child has had so much suffering in her life.  I do know that her joyful spirit makes my job as her mother much easier.  I have always said that if you must have a child with chronic or serious illnesses, Deanna is the child you would want.

So now, we do what we’ve done so often in the past.  We wait.  For the right connection to the right medical specialist who can give an exact diagnosis and offer up some treatment that will provide our girl with relief.

I am not great at waiting.  Patience is not my strong suit.  I believe Deanna is my gift from God – a living lesson in the art of patience – and grace.

About bonniejpreston

Life is an adventure. Make every day count. Enrich the lives of those you meet along the way. Don't show up at the end with a wish list. Invest in your health - the dividends paid are priceless. Listen at least twice as much as you talk. Enjoy the journey. Namaste
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