Life in fear

Living with grief is a never a choice.  And so it is something that you learn to live with.  There are many versions of grief and types of grief.  There are different things to grieve.  Sometimes just change can make you feel symptoms of grief.  

But there is no argument losing someone is the toughest grief anyone will ever endure.    Saying good-bye, how you said good-bye, where and when you said it.  All moments that are etched into your memory forever.  Thoughts that are sometimes at the forefront, sometimes farther back.  Nonetheless, thought of every single day.  

These are things I know from my own experience.  Losing Chase was the hardest thing I ever went through.  The terror of the events that happened.  The pain I felt and then seeing my family in pain.  It doesn't get harder than that.  

But time does change grief.  It lessens the sharpness of the pain.  It even numbs it to the point that it's part of who you are and you almost can't imagine living without it.  Though you would give anything to.  

Though I have felt completely sane and mentally stable, I will say that I have never ever stopped worrying that I would lose one of my other kiddos.  I check on their breathing no matter what age they are.  I don't have anxiety attacks, but occasionally I do panic if I don't hear from them.  The youngest one, yes, I do check his breathing much more often.  

It's because I can't get the image out of my head.   I never will.  

What death looks like. 

Last spring, Emma, now a junior in college, had a first-time seizure at her apartment and her roommates helped her calling 911 and then calling me.   WIth a very clean bill of health, this came as a shock.  But as we learned, there is no predicting this sort of thing because it's something she was born with.  Her genetics left her to abnormal brain activity, only to be seen at the age of 20, sitting in her apartment, diligently studying for final exams at her kitchen table, when all of a sudden she fell to the floor, convulsing.  

We were very thankful that there was nothing fatal going on in her brain or heart, but being told that the seizure was basically a fluke of abnormal brain activity and probably won't happen again, didn't give me, personally, much comfort.  Two and a half months later, while living at home and working from home, she had a second seizure at her desk.  She was on medication but had forgotten to take it.  I was home and found her on the floor seizing and a split second, my life felt once again like that moment Chase was being taken by emergency c-section.  Scared out of my mind what was going on and what was going to happen, I held her and Owen tried calling 911 but not before her seizure stopped and she came to.  

We knew it was because of the missed dosage, so there wasn't to do other than take the medicine loyally.  

That was the plan, until another two and a half months later when another seizure happened after another missed dose.  There are other factors that influenced this behavior that I won't go into because I'm writing this blog post about my own personal fear, not Emma's mistakes.  

Though I don't feel overwhelmed with this fear, I sometimes think I really am.  Almost like a sugar addiction that I think I can easily stop, but really I can't.  (cough-cough). After helping her this last time, and now that she's living back at school, I am finding it much harder to live with this fear.  I've told myself (and her) that I won't text her much.  Because the act of not getting a return text from her might just send me into a panic.  And every time she calls me, when I pick up the phone I expect to hear her frightened, frail little voice, crying into the phone telling me she just had another one.  

Or worse yet, her stopping mid-sentence and having one while on the phone with me.  Because most of the time I am talking to her she is multi-tasking so she's typing a million words a minute on her laptop, finishing an email or some homework that's due.  

And with this fear comes the images that are burned into my brain.  Some that I've already seen and some that I'm afraid to see, but I've imagined them all.  I heard on a podcast once that maybe I'm imagining the worst so that when something bad actually does happen, I'll be prepared to deal with it.  

I don't like that way of thinking at all.  

And since this condition of Emma's is genetic, now my brain travels to my other three living children.  What would it be like to find them having a seizure out of nowhere and where and when will it happen?  Every time I hear a crash or bang in the house, my first thought goes there.  

My fear continues to grow.  

They don't consume me.  I still enjoy my kids and being with them and watching them grow and parenting them.  But what they don't know is that these thoughts are there all. the. time.  I can't stop them.  I pray and ask God to take care of them.  But I guess I don't have enough faith because I can't stop myself.  

And I don't know that I ever will be able.

I am still standing...

The cycle of grief is perpetual.  I knew that.  I knew that there would be hard times and less hard times.  And as from the very start of this cycle I was thrown into, I knew about the paranoia.  I felt it in my core.  The paranoia that something bad would happen again.  But, like grief, that feeling cycles as well.

Living in paranoia is a choice.  Though sometimes that seems very unfair to say.  I hope and pray every night that my kids stay healthy and that I'm thankful for that thus far.  But the moments I think about what COULD happen, silently creep in until they become very real again.

On April 24th, I received the call from Emma's roommate.  I knew it as soon as I saw her name on my phone, which was right next to me while I was working at my desk.  And I knew it was something bad.  I knew it right away.   And she said, "Mrs. Pearson, I think Emma has had a seizure.  I called 911 and the firetruck is here and we are waiting for the ambulance.  She is okay right now she's just very confused...."

I grabbed a few things and new where the boys were and Karly and they were all okay so I got in my car and started out to Boulder while still on the phone, getting as much info as I could from her.  The EMTs had arrived and were checking on her.

I had just texted Emma something mindless about 30 minutes prior and she responded she was getting ready for another online meeting. She was perfectly fine.  And now, I'm shaking, hyperventilating, panicking, crying and scared out of my mind.  How could things change so drastically in just an instant?   I knew how.  I knew it all too well.

Emma had a first time seizure that apparently is genetic as her dad had had one in his teens as well.  Never to have one again.  And the neurologist informed us this was likely the case with Emma as it is fairly common--one in ten have a seizure once in there life and then never again.  There is a 30% chance she will have another one at which time she will go on anti-seizure meds and a 70% chance she won't ever have another one.   We were assured, as much as a specialized doctor of the brain can do this, that Emma will be fine.  As a recommended precaution, however, she was scheduled for an EEG test in a couple weeks, as soon as COVID allowed for the office to open.

The results of this test, however, were abnormal.  It was deemed her sodium blockers in her brain do not behave in the way that they should and that this is just the way she was born, according to the doctor.  This is why she had the seizure, which was probably a result of some extra stress and the sleep deprivation that comes from the last weeks of sophomore year of college.   She had a 70% chance of having another seizure--the doctor sent in her prescription and  she started medication that day.  And we were ensured, again, as much as the neurologist can assure a mom who lives in a cycle of grief, that with the medication, she will likely not have another seizure as long as she takes her medicine twice every day....for the rest of her life.

Emma moved home.  She completed her finals and even started her summer internship from her home office.  Her lifelong dream of studying dolphins in Greece was granted her this summer but cancelled due to COVID-19 and I cannot even imagine how that would have gone in her state had it not been cancelled.  There was more that needed to happen and she wasn't prepared.

This time with her has been so very endearing for me.  I have experienced so much joy with her and I struggle to find words to describe this feeling.  We had such a hard time her junior and senior year of high school and she grew experientially her freshman year.  She was well on her way in her journey with her plans all set and I settled in as her biggest fan, sitting in the shadows watching all she accomplished.

But plans change or such is life.  And this spring I became a bigger part of her life again.  We've hung out more times than I can count and had more conversations than I'll ever remember, but I will never forget this time we've gotten to spend together.  I am so very grateful for that.  So grateful.  However, my wave of grief is building.  I can feel it gathering it's energy.

Two days ago Emma had another seizure.  She was in her office space, working at her computer and Owen heard a crash upstairs and looked at me as I walked out of his bedroom from putting away clothes.  His look at me was so startled, I said, "what?"  And he said,  "What was that?"   I heard noises coming from Emmas room.  I told myself she was reacting to a phone call or email or something and probably throwing a pillow across the room or something, but I still rushed to the door.

I opened the door and did not see her walking across the room as I expected.  Instead, I found her laying on the floor by her desk, seizing.   I felt my blood freeze in my veins and I stopped breathing.  This was my first experience seeing someone having a seizure.   And it being one of my own kids, I felt a fear that I have felt before, but hoped never to again.  From the information Emma's roommate had given me from the first seizure, it was much like I imagined.  And my panic mixed with my innate sense to hold her and care for her and do anything to protect her from hurting herself any worse.

The image of my daughter helpless on the floor is something I cannot unsee.  I cannot help but think of it every single day, several times.  I sleep with her when I can't get the horrible thoughts out of my head at night.  I check on her several times if she's not in the same room or I leave the house.   And I hold my breathe when I walk in the house so I can hear her if she is doing it again and when I don't, I go find her.  If she walks away from me, out of sight, for too long, I worry.   And then there is the future....my worry can get overwhelming sometimes.

I have been here before.  In fact, I have had feelings very similar for all of my kids at one point in their life.   When Reese was a baby, I slept with him in the hospital for three nights while he fought RSV and pneumonia.  I remember vividly watching his chest rise and fall with each breath through the night and calling the doctor in when I thought he was breathing too rapidly.  When Owen was four years old he had his emergency appendectomy and there was a point in his recovery as the morphine wore off that he was in so much pain I thought he had stopped breathing and I screamed from our room for help from the staff.  Karly, thankfully, never had as severe hospital experiences, though she was our ER frequent visitor over the years.  And of course, Chase.  My current experience with Emma has brought back so many memories of Chase in the hospital and I find myself staring off into space at a red light wishing I had done things differently.

The strongest, most prevalent feeling after losing Chase was that I wished I had just held him.  Picked him up out of his isolette and held him close to me and physically loved on him, somehow medically fixing all his problems and making him better.  Because that's what moms do.

When Emma was on the floor in her room, that's what I did.  I held her and kept her as safe as I could and, as scared as I was, I felt like I was doing something.   In a seizure, nothing is normal and it feels like death is just lurking around the corner.  It's suffocating.  Like a home birth--so many things can go wrong, or maybe nothing will go wrong.  A seizure happens and then it's over and despite the slow, confusing recovery period, everything is alright.  But it doesn't feel like it.   And the comparison between Emma's and Chase's experience is haunting.

I am still standing, though.  I am still here.  I grieve, panic, live in a state of paranoia most days, check on ALL of my kids to make sure they are breathing--and they are ages 9-20 years of age.  And I still do this.  I see morbid pictures in my mind to prepare myself for the worst -- so if my world is going to fall out from under me again, at least I was ready for it and the horrible traumatic events.

Emma's seizure disorder is genetic, which means that any of my kids could have it.  I'm tired of being told how low the odds are that something bad will happen because it seems like they keep happening and my world will explode at any little moment.   I feel like I try to prepare myself for that every day.   And I think of this danger every time I leave one of my kids alone at home.  It has changed my life.  What if it happens to one of them and I'm not home?

I'm still standing, but it doesn't feel like I'm very stable.  Some days my legs feel like collapsing.  Some days are fine and I keep my mind busy or constantly try to think positive, and pray lots.  I'm still standing, but I'm bracing for the next wave to crash.