Wednesday, September 30, 2020

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.

Monday, July 20, 2020

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 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.

Sunday, March 27, 2016

Right Before My Eyes

Not yet edited.....

I caught myself today.  Well, I"m trying to catch myself.  From falling all the way down.  I keep tripping myself up all the time in this journey of parenthood and wondering where I"m going wrong.  But today, this Easter day, I nearly crashed.  Or maybe I did and I just pulled myself up out of it.  I still feel like I've failed.  I just KNOW it.  I'm not in denial.  I'm not faking it.  I just don't know how exactly I'm going to get out of it.

My kids are old enough now that it's really tough .... to please.  To get the wow factor out of them.  To impress them and get that wonderful feeling every parent when they used to see you as the King or Queen who provides for them, protects them, and  brings them all their happiness.  When a kiss used to fix all their mishaps or imperfections.  Those days were the easy days.  I wish I had known that then.  Maybe I would have relaxed a bit, or enjoyed it even more, if that was even possible.  I loved those days.  I thought I enjoyed them as they were happening, I really did.  I took pictures, I took video, I laughed, cried, walked and talked with them.  It was wonderful.  But I blinked and they became teenagers.  Well, two of them are at least and I'm wondering where time went.  Did I form them into the young people I hoped and dreamed they would be.  Are they gracious and thankful, polite and courteous, loyal and respectful, helpful of anyone that needed help....Those are the questions I am asking.  And though I doubt myself all the time because that is my nature, I am almost always comforted at the end of a challenging time that they are the kids I laid the foundation for.  Yet I am beginning to see the paradox in parenthood of our generation clearer every day.

We want the best for our kids and always will, just like our parents did.  We want to give them more than our parents gave us or could give us.  But it seems somewhere along the way, our striving for perfection became self-fulfilling.  I'm constantly trying to do a better job than I did yesterday or last year or last kid or last birthday or last holiday.  It's exhausting.  Somewhere along the way it became so very physical and materialistic and about things, not feelings.

I did it this Easter.  I have been thinking/stewing about it for two weeks and in my denial of how quickly the days were passing, soon it was the weekend and the next day was Easter.  My sister had come to visit and it seemed like it would be much easier or more comforting or funner or perhaps enabling (lol) to do the Easter rush with her.  It was.  All of that.  And we even shared a bottle of wine and watched a movie during easter bunny preparations until the wee hours of the morning.  But I never stopped wondering if what I had bought for my kids for their baskets was good enough or equal or appropriate or sentimental enough.....or just enough.  Given the snow covered ground this weekend, we had no choice but to hide easter eggs inside the house this year.  For 9 kids.  Four of them 16 or older.  Owen is 5 and it's really fun at his age because he's still at the age that anything will make him smile.  He is so lucky to not have any expectations.  He is just happy to get something.  I don't think he cared what it was.  But the older kids have expectations because they get stuff every holiday, every year and lots of it.  And the older they get it seems the more expensive it gets.

And then I see myself and wonder how did I let this happen.  Why do I feel like I need to do this and have to try and do better this time than I did last time.  Because the harder it gets, the more I don't feel like I'm try to outdo myself, but rather keep up with myself.  I fear more doing less than I did last year....because I'm tired, because it's too expensive or I just don't get it all planned out well enough.   And I don't have help.  Patric helps by providing the money to let me do their baskets, but the rest of it is on me.....fitting it into the budget (or not and then stressing about that) and then the time to prepare and each year I feel like I fall short.  And this year I got to do this and share the stress with my sister ;-) but staying up all night did not do me any favors.  I was short on sleep and when the kids woke up to find the eggs, I was about half way into my necessary sleep time.  I was exhausted.  And when the kids walked around our small house searching for nearly 100 eggs, the comments from the hard-to-please crew started landing on my ears about how easy it was to find their eggs and baskets and the lack of thankfulness or gratefulness just started to get to me.  The exhaustion setting in and lack of patience taking over as I worked on our holiday meal continuously all morning.  It got to me.  It caused me to crash.  As I was waiting for rolls to rise, I found myself in bed. trying to hide under covers and fall asleep for some peace and quiet as half of our crowd went to church.  My mind racing trying to figure out where I had gone wrong.  Why I felt like my kids were so demanding and inconsiderate of the effort and care and love that I put into this holiday for them.  I was trying to hide from it.  And I realized this....but I also realized I don't know what to do.  I feel myself in this rat race and I need to get out of it.  I want my kids to appreciate the things we give them.  I want them to be respectful and courteous.  I know they are all of these things.  But I want them to see the difference between needing things and wanting things and whats most important.  I want them to be helpful when they are guests and leave things they borrow in better condition than they found them.  I want them to be able to cook for themselves the basics and offer to cook for others and clean up after them.   I know these are things that my kids are capable of even though they may not do it all the time.  I want to have as much faith and confidence in my parenting as I do in them that  this is how I have raised them and am raising them and that when not under my watch, they continue to behave this way.

It's a constant work in progress.  It's a constant battle and a constant act of living by example which I am not the best at either.  I just want to instill in my kids that things have value and that they value them appropriately and intelligently.  These are things I'm not perfect at.  But I am trying and will not give up.  I will continue to tell them the things I want them to know and believe and trust.  And how much I, and most importantly God, love and value them.  These are the things I can do.   And I will try.

Sunday, April 19, 2015

Happy 6th Birthday, Chase Allen Pearson

We celebrated you on Tuesday and I have to be honest, we were quite sad.  There is never going to be much happiness in celebrating your birthdays and there's nothing anyone can do about it.  We drove up to the mountains and bought the most perfect balloons six balloons.  We each wrote you a message and we found the most perfect place to let them go.  But it was hard.  It's always hard letting go and I feel like I have an eternity of it with you.  The wind carried the balloons and it was hard to tell where they went before they were lost in the blue and white colors of the sky.  Reese was sure his balloon got held up by a treetop and popped and it absolutely crushed him.  His heart broke…for you…for him…for his balloon.  It was out of my control again and all I can do is watch, and love with all my heart, the kids that I CAN hold in my arms.  We miss you Chase.  Our hearts ache every day because you aren't here with us.  But we hold you in our hearts and will never stop remembering and loving you.  And we continue on only because we all know that we will see  you again someday.  And we will hold you and hug and kiss you and there will be so much love.  More than any of us can even fathom.  Here are a few pictures of our day celebrating you.  I hope you got our messages and maybe you can somehow let Reese know that.  And hopefully you had a cupcake with us, too.  Happy birthday sweet boy.


Thursday, April 16, 2015

What 6 years feels like

If you would have asked me what it feels like to have a six year old before Chase was born, I would have told  you, that it is such a long time.  Six years old is so big and I want them to be 2 again!  But Chase came and my perspective is completely different.  Most likely due to circumstances, but six years seems like yesterday.  I remember it clearly.

Chase's birthday was yesterday.  He turned six years old in Heaven's arms.  Not mine.  And it has been hard.  I had been thinking about this day for the past week.  My pregnancy with Chase kept popping into my head.  Him moving inside of me.  That I had read that his DNA is still in me.  That I was such baby for not being able to carry him longer.  That he was born five days before Reese's birthday and he should have been born five days after.  Still, my life would have been crazy planning two parties so close together, but it should have been the other way around.  Patric and I were fighting on Easter and it reminded me of the big fight we had on Easter the days before Chase came.  Deciding to tell Emma about the Easter Bunny because I needed help.  I was such a big baby.  And I went to bed the Monday night thinking about the night before Chase was born.  Crying myself to sleep because I was taking God's work into my own hands asking for an induction so I wouldn't have to endure 12 more days of the discomfort.  Why couldn't I have just rode it out?  Hugging Owen a little tighter as my tears and fatigue set in, I finally slept.

I looked at the clock Tuesday morning and saw 7:21am.   I felt a punch in the gut as I thought of 7:21pm that day six years ago and the madness that ensued.  I remember what seems like every little detail of the horror that unfolded.  Why didn't we just demand a c-section earlier?  I knew somewhere inside of me that all that blood I lost all day long was not right.  I knew it wasn't.  Why didn't I call him on it?  And when the baby's heart beat was lost, the fear in the doctor's voice as he said we were going into surgery.  NOW.  Those details, the little ones, that I so often block from my mind as they try to resurface.  I was trying to recall every single one.  I wanted to let everything come back.  It felt like yesterday and I could see it in my mind all so clearly.  The out-of-body feeling that haunted me so heavily after Chase was born...I let it come back.  The feeling of floating around the room hearing the voices...then the cosmic blackout.  And re-awakening.   Knowing/feeling not pregnant anymore. Wanting to know....was it a boy or girl?  Where is the baby?  How is he?  And seeing him the first time.  When they wheeled his isolette into my room so I could see him before they life-flighted him off.  Those eyes that looked at me and my voice that sounded so comforting, even to me, when I spoke to my child for the very first time.  He was mine.  But what happened?

I'm shaking even as I type these words.  But I remember being in a state of shock for the next several days.  Not knowing how I was even living under all the stress and worry and fear.   And so many more little details that happened over the  next few weeks continue to haunt me...but I feel like stopping here.

Because I'm realizing again that I'm on my own right now.  This journey is a lonely one.  No one who has not lost a child knows your life or how your thoughts are controlled.  The new normal that six years ago, I thought would eventually grow old.  But it doesn't.

Several  years ago, way before I had kids, I had a friend where I worked who became very close to Patric and I.  She was almost like our adopted mom in some ways.  She had lost her son to a drowning accident when he was 2 years old.  I remember her saying it the first time and thinking how horrible it would be to lose a child.  I don't remember her talking about it much at all but I do distinctly remember her telling me that even then, it was like it had happened just yesterday.  And her eyes welled up with tears that she struggled to keep in.  Of course I didn't know what to say to her and I don't remember it coming up again.   But I have thought about her a lot since I lost Chase.  We don't keep in touch anymore but as I am now six years out, I know that these memories will never fade.  I still think about Chase every singe day if not the first thing when I wake up, then he is the last thing I think about as I fall asleep.  And several times in between.  That will never change, for the rest of my life.

I guess what I was reminded of this year was that this journey is solo.  And by that I mean for me and my husband and my kids.  Only we celebrate Chase and think of him as much and deeply as we do.  No one else does, even in mine and Patric's own families.  My community of BLM's support me every year and give me comfort because they are on the journey too.  But no one else does.  At a point of my life when my relationships with my own siblings and parents have become distant and broken, I am reminded of this again.  That I am in a club I was not invited to.  A place that I can never leave.