Thursday, April 30, 2020

Another 30 days

My new least favorite days have become the last one of the current month and the tomorrow that follows.  It represents another month that is finishing without Sonzee being here with us and the new one that is beginning without her to ever be part of.  Today marks the end of the 2nd full month of 2020 that she was not part of.  Tomorrow marks the start of the 3rd month that she never got to see.  On Sunday it will mark 3 full months, 90 days, 1/4 of an entire year that she was not here.  Just typing the words suck all the air out of my lungs and fills me with an immense amount of suffocating weight.

It seems unfathomable that the world has continued to go on without her presence. It is almost impossible for me to grasp that the laws of life even allow parents to outlive a child, how can such a situation be allowed to occur?  How is it that I have woken up every single day since February 4 and she hasn't?  How is it that she has been somewhere else being taken care of by someone other than her parents, other than me, for yet again another 30 days?

Today marks the 30th day of April where there were was not one single picture of her taken.  Tomorrow will begin another month on the calendar that in the future won't be able to provide any throwbacks during the year 2020.  I wish the milestones that occurred after death could be celebratory instead of overshadowed with harsh realities.  I wish I could say that the closing out of April taught me something more than the knowledge that it is possible to continue to live without her.  I wish I could say that May will teach me something different, but it won't.  It will just be another 31 days of survival.

The Mighty Contributor

Tuesday, April 28, 2020

The hallway

The hallway is finally empty.  It wasn't exactly planned in advance for it to happen today, but this morning I received a message saying the items could be picked up today.  It was supposed to be for TPN specific items but then I asked if I could just send everything off to which the texter happily obliged.  She "gets it", her niece passed away last year and she wanted to be as helpful as possible in easing this process.  

Once all the items were loaded into her car the conversation of Sonzee's wheelchair came up and in the end, she gladly took it away as well.  I much prefer these items going off to help others who are in need, it is the closest we could get to organ donation since CDKL5 essentially ruled that possibility out.  It is a shame on many levels because that girl had one hell of a heart, but then again, without CDKL5 the consideration would most probably not even be on the table, and this blog post, as well as her entire story, wouldn't even be written. 

In the end, the hallway is now empty.  The seat in the car that once held her car seat is empty.  Her ppod, stroller, and rifton sitting in our master bedroom are empty.  The spaces in this house that were once filled with so much equipment I would go insane trying to keep it organized are now representative of an even bigger void that we will have to live with.  In the end, our hallway is now empty; almost poetically to match our hearts.

"No one said this would ever be easy, my love" -Olivia Holt

The Mighty Contributor

Monday, April 27, 2020

12 weeks

Dear Sonzee,

In 1.5 hours it will have been 12 weeks since you were physically here with me.  Mrs. Gayle came by yesterday with a box of 4 heart shaped red infused glass rocks.  She made them herself.  I was inside when I saw her bring the box over to aba and I quickly ran outside to see what was inside.  I was glad she was back by the car because my eyes filled with happy tears.  She included a note to do what I wanted with them, so for today I brought you one.  The other 3 are still in the box by my desk,  but at least 2 more will eventually make their way over to you at the right times.

This last week has been filled with so many different emotions towards your absence. It was the first week I was the recipient of some of those “did they really just say that” statements.  You know the ones that make Ema’s head cock to the side and say “mmhhhmm”.  I wasn’t so to speak offended because I honestly haven’t been able to stop laughing over the fact that they were actually said.  But no, I am not over the loss of you yet and losing a parent is entirely different than losing a child.  I honestly am still surprised with myself that I am still able to be shocked by people, you would think that after 36 years I wouldn’t be.

I learned this week that hummingbirds favorite color is red and now I am actually contemplating planting flowers that would attract them to the house.  I know that has to be making you laugh hysterically at the mere thought, because no my ability of keeping flowers and plants alive has not changed in the past 12 weeks.  I also have zero desire to deal with the bugs that inevitably would visit the plants; if only there were away to just get the butterflies and hummingbirds without the insects and bumblebees.  Who knows though, maybe tending to some pretty flowers are what I need to put use of all of the time I used to spend on your care?  Maybe it will make me feel like I haven’t completely lost my purpose?  Or at the very least maybe it’ll just be a good hobby for me?

We hit our first days of 100 over the weekend.  In case you forgot, it’s really really hot.  I ordered myself one of those huge floppy hats to start to wear when I see you because as it is over the last 11 weeks my face has taken a brutal hit with the sun exposure..  I invested in some higher spf sunscreen as well, and wish the cemetery offered covered tents, but since they don’t, I am considering a portable umbrella with a spray mister to bring.  I switched from coming in the afternoon to more mid-morning, and at least there is a breeze, albeit warm. As long as we are here I’ll be visiting you daily, and honestly the heat and sun are more bearable than living without you and since I feel the closest to you at the cemetery, that’s where I’ll be.

Looking at pictures of you over the last 5 years have been making me miss you more.  I find myself saying how I wish I could go back to those days.  I wonder multiple times throughout each day what you would be doing at those specific moments.  I wonder how you would have enjoyed your school zoom class.  I wonder if you would still insist on nurse Paige taking your for a walk even though it’s a gazillion degrees outside.  How would your seizures be? Would they have finally started to settle down now that you would officially be 5?  Would you have been able to sit independently?  So many questions I won’t ever have the answers to.

As always I will end my letter with hoping you are having fun and staying safe while letting you know we all miss you such a huge amount there are no words that could adequately convey it! Until next time.

Love always,

The Mighty Contributor

Sunday, April 26, 2020


I’ve been sent spinning twice in 24 hours.  Both times it was as if I was standing in a dark hole while a circle of light spun around me taking me back in time.  Both times it lasted for a split second.  Both times I stopped breathing.  Both times I had to remind myself she was gone.  Both times felt like a smack in the face.

On Friday I came home from visiting Sonzee to Sam telling me to go to her room.  I washed my hands and stood in the kitchen longer than he wanted me to and prompted me again.  I detoured to her little brothers room to put something away and her older sister stood in the hallway facing Sonzee’s room, hands cupped over her mouth saying “oh my g-d Ema, you’re going to love this”.  Intrigued I walked now quicker into her room to find baby brother asleep in her bed.  Big sister then promptly says “but isn’t it unsafe, Ema?”  I removed the railing from the side of her bed about 6 weeks ago, there was no reason anymore for it and it hurt to see it there, but now her 2 year old brother lay in her spot.  Turns out he put himself there to read a book before nap time and Sam had gone to the kitchen to grab his milk and he fell asleep without him knowing.  About 2 hours later he was waking up in a cranky mood so I climbed into bed next to him.  I closed my eyes and for a split second I was back to the last 2.5 weeks of her life.  The same spot, next to a warm tiny body, except I opened my eyes and it wasn’t hers. Dagger to my heart.

On Saturday evening we went for a family walk and stopped outside my sisters house.  We talk through her front window which is tall and wide enough for both our families to see one another.  My niece excitedly runs to the window wearing an all too familiar nightgown.  I bought the nightgown last summer in NY for all of us girls.  “Matchy, matchy” with Ema and her girls. Except now pretty much all of Sonzee’s clothing is being worn by my niece.  So I see her in the nightgown and my heart skips a beat, “Wait! How does she have that nightgown that’s Sonzee’s” I turn my head around quickly behind me in a panic, as if we forgot her on our walk.

How did my mind forget?  What was it thinking? (I guess it wasn’t). Should I just be thankful this is the first time in almost 3 months it’s happened?? Should I expect it to occur more? Why all of a sudden now? My heart is already in the tiniest pieces and then these milliseconds of panic mixed with the idea she’s here break those pieces even more when I realize it’s just a trick my mind is responsible for.  Maybe this is the price to pay for “being in my grief”.  For allowing myself to begin to acknowledge the reality I have been trying to hide and escape from.  Maybe this is just all part of the process of the journey, I just wish it wasn’t as blind as the journey of her life was.

Wednesday, April 22, 2020


The first time I went back to see Sonzee after she passed it was 7 days after we buried her and the day before her 5th birthday.  I went into the office to ask if there were any samples of things I could look at to just get ideas for what we might want for her headstone.  I am pretty sure I caught them off guard because they normally don’t even discuss the process until a couple of months after the burial.  They didn’t specifically have anything for me to take home, but I set up a time to come back and go through books and take a walk around.  By the end of the week I had ordered everything I wanted, but we didn’t have to have the inscriptions ready.

I didn’t know what I wanted to see written on her headstone, and Sam was hardly on board with me placing the order of the items in any case so we were definitely not discussing what would be written on them.  Fast forward to now, 11 weeks after she has passed and 10 weeks since I started the process of this project.  I have walked the rows of the cemetery countless times and googled numerous headstones. This ranks up there with the importance of choosing a name for your child and worst thing to have to do as a parent.  This only gets written once and it’s for forever, making it such a hefty responsibility.

Over the last few days I’ve been writing everything in my mind, and even attempted to draw the stone outline and the words on paper.  I am trying to make sure I do her proper justice and include her essence.  It is such a difficult concept to grasp, writing words to go on your now would be 5 year olds headstone. I don’t want it too juvenile, but at the same time she was 4.  I don’t want to leave something off that was important to her, but she never could communicate verbally for us to know if we hit the mark with our understanding of her likes and dislikes.  Sam and I are both inspired and pulled towards different quotes; it’s hard to honor all 3 of us, and at the root of it all is just an anger and sadness that this is even part of our journey at all.

Monday, April 20, 2020

11 weeks

Dear Sonzee,

Today at 1:08pm marked 11 weeks.  Every week seems harder to process just how much time has gone by since you were last here with us.  Boy has it been one of those Mondays, and one of those days in general where I feel like I am on the verge of tears or they are already escaping my eyes.  It has been a complete, and I suppose even mix of highs and lows since 7am this morning.  Your siblings went back to school today following their two-week spring break.  I am not quite sure what the three weeks before that were, but I am thankful they are back to at least being occupied throughout the day with some sense of structure.  The structure and routine are nice, but I feel like my head spends more time spinning around between what each of them needs and the things I am doing for work.  Although, to be honest, my work input feels minimal these days, but the report writing seems to be perfectly timed for when your siblings need me.

I went to visit you today, you're "still in the ground" as I report to Aba when he asks how you are doing.  Your grave has a copious amount of colorful rocks.  So many people have been visiting you and bringing you rocks or sending me rocks to place by you, it fills me with such happiness and warmth that you are so loved and meaningful to others, but its an indescribable pain to not be able to actually put them in your hand or try to get you to look at them.  I wonder which one would be your favorite.  I really love them all, but each one evokes a different emotion when I hold it before placing it in its spot.

Yesterday I attempted to do some fun pictures of your siblings on the inflatable obstacle course we are renting in the backyard.  Auntie A is attempting to touch them up, but my iPhone camera isn't exactly the best and photography isn't exactly my strength, but I think some of them came out cute.  It was challenging to take the pictures without you, but the most difficult part is figuring out what to do with them.  I can't bring myself to put up a picture without you in it, the thought alone rips my already broken heart further apart.  It's these parts of the journey that feel impossible.  Getting up and performing actions of life throughout the day are easy in comparison.  There is an ability to be creative and not focus on your absence, but events and moments on cameras document and remind me of the unavoidable and undeniable obvious facts.

I am unsure if it has been you visiting us lately, but we have been having an abundance of hummingbirds flying around the house.  I had no idea until the later part of last week that they held any significance for heaven.   I have been wanting to honor you somehow by putting something outside in the front at home so I was on Etsy typing in various keywords and voila, hummingbirds and visitors from heaven popped up.  As of this afternoon, there is now a beautiful glass wind chime in red, black, and blue with a hummingbird hanging under the front entrance.  I also have a garden flag that I had customized with your name on its way.  It still doesn't feel complete, but maybe that is just the ever-growing void and emptiness that I now carry without you here.

Your older siblings are currently rollerskating and playing hockey out front while Noam is running around stealing sticks and hitting pucks into the net.  Aba has been busy at the warehouse with 3D prints so he isn't here right now, and I am sitting on the swing thinking how you would have loved the breeze this evening and I would be having to yell at Tzvi to not hit you with pucks and balls.  I can see you sitting next to me in your Rifton or laying on the seat with me and just hanging out for a few more minutes before we would have to take you in so the mosquitos wouldn't get an easy feast.  These moments rank up there in the worst part category, if only that list would stop growing.

Tomorrow brings us another day closer to another day further from you.  Another day for me to learn something new about navigating this still relatively new world of grief.  Another day of trying to figure out my place as your mother.  Another day of wondering what you have been up to since you left us here.  Another day of hoping and praying you are safe, healthy, having fun, and free from all of your suffering and pain you endured while here.  Tomorrow will just simply be another day of me just trying to stay above water and missing you immensely.  Until tomorrow.

Love always,

The Mighty Contributor

Sunday, April 19, 2020

Not okay

The first time I remember reading this quote was when I was a teenager.  It is one of those quotes that attempt to offer some sort of comfort in various situations, and for many of those situations, it does work because there is a motivation to keep going until it really is okay.  But, I am learning that it just isn't always the case.  There are some times when it's the end and it's not okay and there are some times when it's not the end and it's still not okay, but to quote a book I am reading, sometimes "it is okay to not be okay".

There seems to be some sort of emphasis on things needing to be okay.  A need for life to constantly be rainbows and butterflies, or to at least try and put a positive spin on things or else you are failing or doing life wrong.  If you don't attempt to see the good in the bad than it's a problem, you aren't feeling blessed,  or you are being ungrateful.  If you cannot or do not make lemons out of lemonade than it's your negative attitude that is the issue.  There are plenty of horrible situations, that are excruciatingly painful, that are just not okay, and there should be no reason they are trivialized. 

It can be dark and scary to be sucked deep down into the depths of not okay.  It can even feel cold, lonely, smothering, and suffocating while you are there.  Sometimes not okay is just part of the journey and there are going to be times where there is not going to be an end.  On the longer journeys to nowhere, while you continue to wait for the nonexistent magic wand that will make everything okay, try to find someone to reassure you that it's okay that everything is not okay, and if is not okay, it doesn't mean you failed.

The Mighty Contributor

Thursday, April 16, 2020

April 16

Thursday, April 16, we meet again.  Who knew that 5 years from the day we first met I would be honoring you alone, missing the crucial piece that gave you whatever meaning it is you now have.  You are a day that I honestly don't think about for an entire year after you pass, but a day that I dread as you creep slowly towards me on the calendar.  I wonder if there will ever be a time I am at peace over what it is you actually represent.  I wonder if you will ever hold a bigger purpose than to just be another horrible, nagging reminder of all the pain that you brought with you that day in a small square office off of the 101 and 51st Avenue.  I wonder if I will ever forgive you for now being another day that I can no longer spin into something positive because allowing you into our lives ultimately allowed you to take her away.

April 16, you have always been a double-edged sword for me.  I have always tried honor and give recognition to what you have become, a date of vital significance, but one I wish didn't exist.  You will always be a date that I pay homage to the fact that you brought us an answer, albeit one we never wanted and one that at one point we didn't think could even exist.  You will always be a date that changed the course that our family was taking, and maybe one day I will realize it was for the best, it was something we could handle, and it was what was meant to be.  Somehow I don't think any of those sentiments will heal my heart, and they don't offer an ounce of cushion for the havoc that we all have endured over the past 5 years.

It has been 2 months and 13 days since she was taken away from me. 2 months and 13 days since I last got to feel her in my arms and since I last gave her a kiss.  It has been 2 months and 13 days since we became a physical family of 6; two boys, two living girls, and a daughter who died.  It was 2 months and 13 days ago that the fear that was always attached to the string of letters that was printed on the piece of paper no longer was fear but real and tangible.  But if I am honest with you, it was on our first encounter, 5 years ago that you essentially stole her from me.  In exchange for a measly piece of paper you took every dream I had for her, every dream I had for her and her siblings, every dream I had for our family, and every dream I stopped making that day.  If I loathe any day of the year, it is today, April 16, and while I am unsure if that is fair given you were just the messenger, I don't know if you can ever really be forgiven.

The Mighty Contributor

Monday, April 13, 2020

10 weeks

Dear Sonzee,

Today marks 10 weeks since you were last here.  We are already halfway through Passover and almost halfway through April in general.  All of your siblings stayed up for the entire Sedar both nights.  It was really mind-boggling to me that it was still just as late as every other year even with it only being us.  To be honest, I was not really feeling all of the laughter and holiday spirit the first night, but by night two I managed to get myself into character and read in silly voices and it was fun.  We finally remembered to wear the face masks for the 10 plagues, and since you know how dark humor runs deep in our house, Laeya thanked you for taking the position of death of a firstborn.  We did remind her that she wasn't the firstborn son, but, she was thankful nonetheless.

I have been reading in many books and have been told by other bereaved parents to do something a little different for holidays since it will be challenging enough to not have you around in general.  I decided that I would start by buying myself a bouquet of flowers, once I got onto the website, I decided to just go all out and buy the biggest one that had the most variety of colors and said "Sonzee".  The one I chose has various types of flowers and a multitude of bright colors.  I hope you would approve of them.  I placed them on the center of the table when they came and was proud of myself for "changing it up", but then when I looked over at them during the Sedar I couldn't help but get tears.  I swallowed them up pretty quickly, but as usual, I didn't expect that to happen.

This whole grief journey is almost more of a roller coaster than living life with CDKL5.  At least, for the most part, the ups and downs came in waves that were slow building to start but then turned into Tsunamis.  This is more like a series of 10 feet waves that pound the shore and then vanish into calm seas where you question if the waves were really even there.  My heart and mind change by the second.  I used to be able to take things day by day, but it seems now they are literally broken down into just minutes.  I can get two people checking in on me within 5 minutes and my desire to reply or the words I want to say can be vastly different.  I tend to stick to the emoji kiss in the majority of my "not up for talking" moments, because it sums it up.  I am appreciative for the check-in, I know they want me to know they are thinking of me, but my heart isn't in a place to reply with words.

Your little brother, the king, slept too late yesterday for us all to make our weekly family visit together to see you, so Tzviki and Meena came.  They borrowed two rocks from your basket, but don't worry, they are all painted for me to return to you today.  I am going to bring some clear acrylic spray paint to cover all of the rocks already painted because I am afraid the sun is going to wear them down over time, and that thought alone is making me anxious.  I am sorry I haven't painted any new rocks this past week, I was getting worried if I continued, I would use up all of the room this year, and well, we have decades to go.

Noam has been calling out to Laeya shortly after aba or I have read him his 193837 night time stories.  She climbs into his bed and they talk.  You would be flabbergasted by his speech these days, there are times throughout the day where I do a double-take wondering if it was really him who just spoke to me.  He has become the cutest, most yummy, insanely adorable two-year-old.  Aba has been a bit bummed lately because he has not been requesting the "Dondee book", I have reassured him he has his own form of grief as well.  During one of Laeya's and his evening chats, Laeya came out to inform us that he couldn't go to sleep because he was missing Sonzee.  I sort of gave aba the "aha. I told you" eyes, complete with a head nod, but deep down I was holding on by a thread to not cry.  I am so thankful they all have each other.  You should know that you are going to be the glue that keeps them so closely bound together for the rest of their lives.

Laeya told us you were in one of her dreams last week.  She said you were a superhero, complete with the cape and all and you came to save the day between a little rift that was occurring.  I think it is fitting since she wrote that essay where she considers you her superhero.  Aba was a little jealous you haven't visited him, but I told him that he and I just aren't ready yet.  I don't know if that helps him at all, but it makes it a bit better for me.  I was told that you will come when you know we are ready for you.  I do wonder what ready means though I am doing my best to trust you will know best in this situation, just like how you always trusted me when you were alive.

I have been doing a lot of daydreaming of wherever it is you are.  I have been trying to figure out how it works in Gan Eden with social circles.  Did a flood of people come to surround you when you first arrived?  Since then who have you met?  Where you waiting to meet the famous Charlotte because of her impact on you?  She was the one who inspired us to try medical marijuana for your seizures.  Did you meet Anniston who had a different genetic mutation that caused Krabbe but whose story Ema followed for years albeit her different struggles from yours?  Were you able to meet up with Harper yesterday to celebrate what would have been her 10th birthday?  I know Miss Penny and I wish so badly you girls could have met when you were both alive, I still find it challenging to believe you are both gone.

I would love to know who you have met over the last 10 weeks?  I wonder if there a waiting period before you get to see certain people or do certain things?  I guess I will have to settle for waiting for all of these answers, but until then, please continue staying safe, and remind yourself that we are carrying on down here no matter how difficult the days and that we love and miss you greatly!

Love always,

The Mighty Contributor

Wednesday, April 8, 2020

World of grief

This past week has honestly been a really tough one.  Maybe it's because as of writing this blog it has been 9 weeks, 1 day, 11 hours, 36 minutes (and counting) since she was here.  Maybe it is because I have virtually sat in on two circle times with kiddos who are Sonzee's age and who go to her school.  Maybe it is because in less than 24 hours we will be celebrating our first of many big holidays without her here.  Maybe it is because this week alone two other families were forced to say goodbye to their daughters.  Maybe it is because it was challenging enough to live a life in the world of medically complex, but it is nearly impossible to live in a life without it.  Maybe it is because Sonzee's sister is also having a tough week and I hardly know how to manage my own grief, it breaks me, even more, to make sure I am there for her how she needs me.  Maybe it is just because life gives you lemons.

I wish the multiple vats of lemonade I made this week (to rid it from our house for Passover) made a slight bit of difference.  But truthfully, there is really an insignificant amount of lemonade that can be made out of having to bury your 4-year-old and then live the rest of your life with the constant reminder that you did.  There are no sufficient answers to so many why questions and the answers really don't matter in any case.  There is only so much that can be done to help the confusion, pain, and understanding to a 10, 8, 6, and 2-year old sibling.  After all, what they should have only known was the amazing joys and typical challenges that having four additional siblings meant.  There should be three little girls in matching outfits fighting over headbands and socks.  There should be another doting sister dragging around the 2-year-old.  There should be another girl part of the club not allowed in her oldest brother's room.  There shouldn't be a huge piece of the puzzle missing causing the completion of each of their individual puzzles impossible.

I wish there was an end to this grieving process, that there was a class I could enroll in and upon completion, I would graduate out of mourning.  I wish one day I would wake up and feel completely whole again, yet every book I have read has prepared me for the fact that this is a journey in and of itself, a marathon if you will, one that isn't going to end but one that will continue to evolve and change throughout the years.  Sadly, I know what that means, and in 7 days from this post, it will have been 5 years since we began Sonya's Story: A journey with CDKL5, a marathon that has proven itself impossible to finish.  Despite the many medals we might have accrued, despite the number of water breaks that were taken, despite the small celebrations and minute victories along the way, and even without her here to be with us physically, we will always be living a life intertwined with CDKL5, and so too will our family forever be living in a world of grief. 

The Mighty Contributor

Monday, April 6, 2020


If we had been quarantined in a world that still had Sonzee I would be participating in family handprints with cute little sayings about being stuck together.  I would be trying to find a photographer to stand on the street in front of our house and take pictures of our family being us in the driveway.  I would be figuring out every unique opportunity that was around and succeed in making it happen.  However, quarantine was late, or was it Sonzee was gone too early and now the thought of making permanent memories in her absence crushes my already broken heart more than I thought was possible.

That's the thing I am learning about this grieving journey.  Some days can still get worse, it is actually possible to have an already broken heart shattered into smaller pieces.  I assume the struggle between parenting Sonzee's siblings while honoring her absence is going to feel insurmountable at times and at other times doable.  I assume there is going to be a constant give and take and an alternating sacrifice between which side will be honored.  I assume I will eventually find a way to compromise in a way that still leaves my heart yearning for what could have been, but comforted by the way it all came together.

I cannot stomach leaving her handprint out of our family, but I don't have her here to add it in.  It hurts to have a family picture without her face distantly looking off.  There is already excruciating pain to have to accept that she isn't here, but then to have it be in my face while looking at an image or on paper seems like it will be a punch to my gut every time.  I know there are various ways to incorporate her into every project, but it hurts that she isn't here to be involved, and it hurts to have to settle.

The Mighty Contributor

Friday, April 3, 2020


Rock painted by big sister Meena in honor of it being 2 months

April 3.  The date that has been marked in my mind for months.  It is officially 4 months since Sam lost his dad and 2 months since we lost Sonzee.  They say everything happens in three's, so to say we have been nervous about the approach of today's date is probably an inadequate understatement.  Despite the trepidation of waiting to close out today without losing someone we care about, in general, today is weighing heavily on my heart.  The air is seriously so hard to breathe when I actually focus on the fact that it has been two complete months since she was last in my arms.  It becomes even more difficult when I consider that it isn't supposed to be this way.  None of my dreams ever included becoming a special needs mom and then having to bury the child who earned me that title.

Many still feel awkward asking me how I am doing, some ask as if nothing has even happened.  There have been moments when I really have been doing okay.  There have been moments when it has taken everything within me to embrace my inner Golden Globe performance in order to function.  I wish I knew in advance which conversations would be no big deal and which would result in tears either flowing or attempted to be hidden.  It would be nice if I had a magic 8 ball to give me some morning guidance as to how the day would unfold.  More often then not, I am still just finding my footing in this quicksand.

It has become increasingly more difficult to hide from it all.  All of the kids are home but her presence is gone.  I spend a good portion of my days keeping my mind preoccupied with projects, helping the kids with their classwork, and working myself.  If I stick to the mental hamster wheel I won't get pulled into the abyss of grief; but randomly throughout the day, the glimpses of grief are unavoidable.  It's sneaky, creative, and always when I am least expecting.  Moments that follow a seemingly innocent memory or thought of calmness are the worst.  I sometimes find myself wondering if there is a way to go back to a time where she was physically here, but then I quickly remind myself that it wouldn't be best for her.  It is a sound argument that logic cannot deny, so it buys me time until the next sneaky approach.

Many moments are spent reminding myself she was only 4 but she did in fact live.  Many times are spent wondering if it would have been better for her to have lived another 5, 10, or 15+ years only for us to end up in this same position.  I sometimes even wonder what if she never had a CDKL5 mutation, would we have lost her at 4 regardless?  Does it even make sense to hypothetically wonder if one way is worse?  I don't think there can be a worse when it comes to being a grieving parent, it is not a role anyone volunteers for, it's right up there with a Hunger Games assignment.  It's just a random fluke of a horrible lottery where you pray the odds won't ever be in your favor so you don't have to celebrate the milestone of counting the days of your life you are now spending without your child.

The Mighty Contributor

Wednesday, April 1, 2020

Miss her.

I miss her, but yesterday I saw at least 4 posts on my newsfeed that referenced a child recovering from a seizure.  My heart broke.  I don't miss the memories that those types of status updates bring flooding back into my mind.  I don't miss the pit in my stomach every day knowing with confidence that she was going to have multiple seizures during the day.  I don't miss knowing that there was nothing at all I could do to prevent them from occurring, and trust me, we tried just about every typical and outlandish option there was available.  But, gosh, do I miss her.

I don't miss the sleepless nights running into her room multiple times to try to offer her comfort when the seizures would attack her during her sleep.  I don't miss not being able to get into a deep sleep out of fear that I might miss her seizing and she would seize alone, or worse, suffocate or choke during one. I don't miss having to make sure all the sides of her bed were padded so she wouldn't break a bone when her limbs would flail outward during all the uncontrolled movements.  But, gosh, do I miss her.

I don't miss trying to "time" her morning seizures or play "beat the clock" so that swim or school wasn't a wasted attempt.  I don't miss trying to unload her from the car only to have to wait 20 minutes for her to finish seizing in a parking lot so we didn't harm her while taking her out.  I don't miss having to reschedule therapy multiple times a week because she seized right before her therapists walked into the house.  I don't miss that she sometimes spent 20 hours of her day either seizing or sleeping the seizure off.  But, gosh, do I miss her.

I don't miss that her little body isn't being subjected to multiple episodes of involuntary, uncontrollable movements that caused her to be in pain and at times fracture her bones.  I don't miss the amount of Motrin and Tylenol we had to give her due to the suspected headaches that her seizures would cause her.  I don't miss that I never ever have to witness her seizing ever again and I am beyond thankful I never have to write a post about her enduring or sleeping off another seizure ever again, but gosh, do I miss her.

The Mighty Contributor