9 Second Nisha – Chapter 4

9 Second Nisha – Chapter 4

Chapter 4

It’s been a while since I’ve written another chapter.  At least a month.  This story isn’t the easiest to live again and I keep contemplating even continuing.  I’ve been asked by three close family members, people who haven’t even read the story so far, “Why are you writing this?”

If they’d read the first chapter, where it explains my reason, it would be clear.  But would it?  I reread this in its entirety every time I add another chapter, so I remember what I’ve said already, and I realized at 3:50am today, it may not be completely clear.  My reason for documenting this, or telling her story.

This story isn’t really about Nisha.  I can’t tell her story.  I don’t live in her head or heart and I don’t feel things like she does.  The only person who can tell Nisha’s story is Nisha.  I don’t feel the seizures and emotion she’s got wound up in her body afterword.  There’s no way for me to put her world into words.  Not effectively.  She would be highly disrespected if I tried to speak for her anyway.  I know this because I’ve talked to her about this project of mine.  I had to explain what I was doing and let her know I had a story to tell.  Basically, I wanted to make sure she was comfortable with me doing this, writing mostly about her journey without telling her side of the story.

This project for me is about all of the family members who are in the lives of people with disabilities.  The moms and dads, the brothers and sisters, the grandparents, and anyone else who is directly involved.  Raising a baby with a disability makes everyday things more complex.  And I feel it’s important we have a voice.  It’s not always all about the person with the disability.  They have a team of people involved in their world on a daily basis who is also living this life.  Every. Single. Day.

It’s not all bad, don’t get me wrong.  In our family, ever-changing family, we’ve had a ton of successes and beautiful memories.  But there are times when we want to pull our hair out and scream to the world, “This isn’t fair!”  We carry on, just like the person with disabilities does yanno, living this life, and making the absolute best of it.  There are times when everything seems completely normal to the outsider, and then there are times when we are confined to a hospital room, or we are the biggest supporter of someone who just can’t quite seem to make all the puzzle pieces fit.

It’s like packing for a vacation and when you go to close your suitcase, everything doesn’t quite fit in there like you intended.  You’ve got to make adjustments; maybe something isn’t as important as you thought it was to bring, so it gets removed.  Something else might need to be folded just a tad differently so it will fit.  And with each vacation you learn what’s really important, and what can be left behind.  The parts that are imperative and the parts that once seemed like you couldn’t live without, but as time passes some are of less and less importance.

You learn about the emotional rollercoaster that is now your life and how to accept it.  There are ups and downs and good days and bad days, but you keep pushing because you’ve got someone depending on you.  It’s a journey.  It’s our story.

That’s why I’m writing this epic life I was given.  I can’t answer the grand question we all have, “Why me?”  But I can say I’ve never been given anything so far that I couldn’t handle.  God promised me that one and I’m holding Him to it.  And so far, my success rate is at 100%.  I haven’t given up and I’m still going strong.  The years have changed me though, there’s no denying that much.  That’s just like anyone else though, right?

People are basically beings molded by experiences.  We carry a little bit of each experience with us everywhere we go.  The great thing about it though is we have the power to choose our attitude.  We don’t get to control birth defects and diagnoses.  But we do get to control how we let it affect our lives.  It’s not always a piece of cake and sometimes I have to step away from a situation for a minute to gather my senses before I self-combust, but I get through each and every lump this life gives me.

I hope that clears up why this is important to me.  Shall we get back to the story?

Moving right along.

Toddler life was a breeze.  I was probably scared to death and constantly worrying about my future of my baby girl, but looking back now, that time was pretty much the easiest time in our lives.  I didn’t have any definitive answers to anything, but daily existence was simple.  Nisha was just like any other kiddo.  Most days.  We learned to take precautions and there were some extra rules for her, but she was too young to know she wasn’t just like all the other kids.

From the years 2 to 4, Nisha just had a series of neurologist visits added to her regular well-child checks and immunization appointments.  If she got a cold or an ear infection, we went to the doctor, like normal.  Now, when she was running a fever, things were a little more tense for me because I always feared it would cause more seizures.  At this point she was having several a month, but nothing we couldn’t handle.  Nothing that her Depakote wasn’t controlling for the most part.  As her body grew and weight increased, so did her Depakote dose.  Of course we were aiming to be seizure-free, but if she had breakthrough here and there it wasn’t the end of the world.

And here’s the kicker – there’s no magic number that we were given, yanno.  Like, if she has 4 seizures this week, make an appointment because that’s too many.

She walked and talked and learned to dress herself and brush her teeth and tie her shoes.  All on schedule, if not ahead of the curve.  She would play with her Little Tykes kitchen and make pretend blueberry pancakes for hours on end, serving up her plastic food on her cute little kitchen plates to anyone who would take it.  And then make you order more food so she could go back and cook again.

But, when she wanted to go outside and play, she needed to be supervised at all times.  Not because she was a little kid and they are sometimes evil to each other, but for safety.  When she got a bike, we also got all of the safety gear.  Helmet, knee pads, elbow pads; the works.  Sure, she had training wheels, but if she had a seizure on that sucker and we couldn’t get to her fast enough, she could topple over and crack her skull.  And frankly, her brain is already short-circuiting.  We didn’t want to take the chances of jolting anything else in there.

When she was in preschool, she was in a half day program at a public school.  That was a cake walk.  Of course, this was also our first real experience at having to stop the train and tell these people “our daughter has epilepsy”.  It gets easier with time.  I’ve said it hundreds of times by now.  I’ve noticed over the years, either I’m more calloused and don’t pay so much attention to their initial facial expression, or epilepsy isn’t really carrying the stigma like it did 20 years ago.  Either way, it’s part of our life and we have to be upfront with people.  Safety first!

For first grade, she went to a private Christian school.  Her memaw, Terry’s mom, was a preacher and she got us a heck of a discount.  We took full advantage.  In our minds this was going to be a place where she could feel safe and we could feel comfortable handing over our baby.  These were God-fearing people who would take whatever measure necessary to make sure she got the same education, without judgment, and just a little extra caution for when she had a seizure.  Right?  It was a small school and in our minds, that meant they were equipped to take on the challenge.

Pffft.

During her 1st grade year there are two things that happened.  First, I wish I would have caught on to her learning disability that year.  I ignored it and refused to believe there was anything else other than epilepsy going on.  She was struggling to learn to read, but she was also struggling in math.  So, my solution was to buy Hooked on Phonics for her and work with her until she got it.  In my defense, she was brilliant in every other aspect of life and more advanced than other kids her age regarding her milestones.  Everything was super easy with her regarding learning new skills up to this point.  She was speaking in full sentences by the time she was two.  Sentences anyone could understand.  Perfectly articulated sentences.  She knew her ABCs and 123s and everything.

When I worked with her on her spelling lists she would completely shut down.  It’s like the light in her eyes would go out and her brain said, “Go away, I refuse to spell.”  Quite literally actually.  She could get through the first and second run of words, writing them down and practicing spelling… then we would work specifically on the ones she got wrong.  Sometimes it would be just a couple and other times it would feel like she got the whole dang list wrong.  But we tackled them one by one.  If we did this for more than 20 minutes, her brain exited the lesson and her eyes glossed over.  She was dunzo.  Elvis had left the building.  It didn’t matter if I begged, pleaded, bribed or threatened to make her go to bed early.  Nothing pulled her back out.  Nothing but time.  Try again later.

I didn’t think much about it.  I just thought she was having trouble learning to read and spell.  I figured with enough help we would eventually hop this hurdle and keep moving right along.  What I wish I would have realized was the budding learning disorder, and the strength to address it.

During her time at the Christian school she was hospitalized.  I worked for the OU Health Sciences Center at their Family Medicine Clinic.  I was doing transcription for them and it was awesome.  I had doctors basically at my fingertip reach if I needed to get Nisha in for anything.  Well, anything family medicine docs could handle I mean.

The second big event this school year was when one evening Nisha started having breakthrough seizures and I couldn’t get them under control.  I remember sitting on the living room floor holding my limp and exhausted baby girl in my arms and staring at the clock on the wall anticipating the next seizure that would possess her body.  When they reached 10 minutes apart, I called the oncall doc at work.  He told me to give her another dose of her medicine and see if that helped in 30 minutes, but at any point, if I felt I couldn’t handle the seizures, take her to the hospital as a direct admit.

I did what he said and the seizure frequency increased.  I called him back 45 minutes later when she was having seizures every 3-5 minutes.  My voice was shaking and I was scared.  This was the first real bad attack of seizures I’d experienced and I couldn’t fix my baby.  I told him I was going to the hospital.

He did whatever he had to on his end and by the time I got there, the arrangements had been made.  I skipped the ER and they took us straight to the Pediatric Unit.

Side note – If you’re wondering where Terry is while I’m schlepping our little girl to the hospital, I honestly don’t remember.   I think we were split up.  By this time he was working for a different company, way closer to home, but we were having some problems.  I don’t need to get into the details, nosey rosey, but from this point forward Terry and I began our cycle of on-again off-again love that lasted for several years.  So where was Terry?  Not sure, but I know this… if he could have been there, he would have.

At the hospital one of the people (I’m not sure if it was a nurse or a doctor actually, things were moving pretty fast) observed Nisha’s seizures and called for a cardiology consult.  Ok, time to freak out yet?  What the heck?  Cardiology?  I’m a medical transcriptionist.   I know there’s nothing neurological about the heart.  So I was super confused and even more concerned.

The Health Sciences Center is a learning hospital so there are a billion and one residents coming in who you tell your story to first, then the attending doctor comes in and you have to repeat everything you’ve just said.  It gets annoying, but if you look at the other side of the coin, this is a school.  There are many people ever-hovering and assessing this kid.  That means I’ve got all sorts of brain power directed right at my baby and ideas and potential solutions.  It also means these people better have access to all the new treatments and modalities, because it’s a school and all.  Yeah, I have to repeat myself (which is a huge source of irritation for me in general), but if I’ve got the hook-up with better equipment and any number of doctors within reach at all times, I’ll tell my story 37 times a day.

Remember when I said her seizures change all the time?  That’s why cardiology was consulted.  Nisha’s newest seizure was quite different than the previous psycho-baby laugh seizure.  Her head and eyes still cut to the left, but now, right before her seizure took control over her body he eyes would get super wide and big, almost like she was scared, and then she would hold her breath and drop to the ground.  Half of her body would shake and the other side would be stiff as a board.  It was the wide-eyes and scared look that got cardiology on the case.  They felt it could be something to do with her heart that’s causing the seizures.  They thought they heard a Wenckebach rhythm.  (I don’t know how I can’t remember what I had for dinner yesterday but I’ll never forget Wenckebach.)  It’s basically a 2nd degree AV (atrioventricular) block but it sounded really important and life-altering at the time.

The cardiologist ordered a 24-hour Holter monitor for her during that hospital stay.  Nisha thought it was the coolest thing ever.  It’s basically a 24-hour EKG, but for a kid it looks like you’re carrying around a little purse.  Sure, they wrapped her up so she couldn’t swing the monitor around and her torso was covered in mesh holding the unit to her side, but she didn’t care.  She had a fancy purse and she wanted to show everyone!  She would take off out of her room and go straight to the nurses station, “See my purse? Look at my new purse!”

They got her seizures under control within the first day in the hospital, which was great.  They added the Holter and we knew we would be there another day.  What I didn’t anticipate was being told on Friday that we had to then stay the weekend because her doctor, the pediatric neurologist, wouldn’t be in town until Monday and she wanted to see Nisha before she was discharged.  Yeah.  Fun weekend.  Bleh.

The rest of the hospital stay was uneventful.  Well, if you can count trying to entertain a small child in a small room for 5 days uneventful.  We did go to their indoor playroom on our floor times several a day and they even had a floor where there was a huge play center that basically looked like an indoor playground.  She slept a lot the first 24 hours because her body was completely spent.  She would only wake up right before a seizure, but as they started backing off from every 5 minutes to every hour, she was able to get a little better rest.  And then they slowed to every few hours until finally she was only having a couple a day.

I honestly don’t know how her tiny body handled all this mess.  It mentally broke me just watching her.  I felt helpless.  I didn’t know how to make it better and I depended 100% on the knowledge the doctors deemed worthy to share with me.  It felt horrible to be in the dark all the time, but on top of that I still had a little girl who depended on me for everything, and I couldn’t fix the biggest problem in her life.

Nisha was a trooper.  I think it’s because she was in and out of the hospitals and doctors’ offices since before she could walk.  This was life.  She didn’t know anything different.  She was an incredibly outgoing child and loved talking to the nurses and doctors.  They were her “friends” and if any of them were black, she’d tell people they were her cousins.  Nisha is a beautiful mix of black and white, and for a very long time she thought she was related to all black people.  It was hilarious, to say the least.  Her life was that of a normal child, but also consisted of daily medication, breakthrough seizures and being stuck by needles almost every time she went to the doctor.

She was discharged, as expected, Monday morning after we talked to Dr. Parke.  Her medicine was adjusted a bit and she added another pill, along with a rescue medicine, liquid lorazepam I think, just in case we got in another situation where the seizures were coming on that fast.  It was dumb because they recommended I keep it in my fridge.  We didn’t run off to France every summer or anything, but what if we were somewhere for several hours and we didn’t have access to a fridge or ice chest?  We are just supposed to go without her rescue medicine?

Anyway, I was thankful to have it nonetheless.  The frequency of that last bout of seizures really wore us out, mentally and physically.  I can’t really compare what my body went through to what Nisha must have dealt with, and I hate when I think I’m sounding selfish, but this is about the parental units and their story, right?  Emotionally I was a wreck, but I kept it under wraps.  I didn’t know what else to do.  It’s not like I had much of a choice.  Either handle it or break, and I didn’t have time to break.  I had a baby girl that needed me way too much.

That’s basically the entire premise of my existence in learning how to live with Nisha and making sure she had what she needed.   I didn’t have time to break, so I put my big girl panties on and pushed forward like I knew what I was doing.  But underneath, I was a scared mess of a young mom who didn’t have a clue just how much more life was going to try and throw at us.

 

Have I not commanded you? Be strong and courageous.

Do not be frightened, and do not be dismayed,

for the Lord your God is with you wherever you go.” Joshua 1:9

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