Telling guilt

During our last grief support group, we were asked if we could say something to our guilt what would we say.  I couldn't really think of my answer on the spot because so many thoughts flooded my mind like they were part of some giant tsunami.  Guilt in regards to Sonzee has so many dimensions that it is even hard to pinpoint which guilt I would be referencing.  Part of me wondered if this was one of those times that I was supposed to say what I thought someone wanted to hear?  I don't remember if I ever ended up giving an answer on Monday, but yesterday when I was watching the throwback video the question popped back into my mind.  My answer at that moment was I would tell guilt that I did one hell of a job making that little girl have the best life she could possibly have.  The words bring tears running down my cheeks because even though I know to my core that it's the truth, the shadow of guilt literally taunts me as it says "but it wasn't good enough".

There is always this constant war going on within my brain.  Guilt continuously pops into all of my memories and attempts to convince me that situations that were completely out of my control were somehow meant for me to control.  There are times when I almost cave into listening to it, but looking at the physical proof of pictures and videos brings me back to the truth.  I can see that we at least always tried our best.  At the very least we gave it our all, and we gave her whatever our best was for that day.  There is no such thing as being a perfect parent, and there were times I was exhausted and I am sure she could tell, but today I would still tell guilt it has no place.

The definition of guilt as a noun is the feeling of having done wrong or failed in an obligation.  I will forever wish her life was different.  I will forever have hoped that she didn't have to endure what she did for 4 years 11 months and 22 days.  I will forever dream that her siblings didn't have to learn about medical complexities, hospitalizations, childhood death, and grieving.  I will forever wonder if there was some way we could have made her life easier or better for her.  But overall, today, based on the evidence I continue to come across, I am confident we didn't fail her in any manner.  So today I will tell guilt,  "today is not your day, and tomorrow isn't looking good for you either."

22 weeks

Dear Sonzee,

It's been another week down, and an eternity of them to go.  This last week was a pretty rough one, I am sure you could gather as much from my letters.  It was the first week I broke down in the kitchen and your siblings were excitedly telling one another "Ema is crying".  We can blame it on aba because he saw me struggling to hold on to the invisible thread and he got up to give me a hug and that was all it took for me to completely lose it.  I know it is okay for them to see me fall apart every once and a while, but I really dislike any time it happens. 

The one good thing about time passing by is that aba and I are discussing things related to our grief a little bit more, and it appears for once we might actually be on the same page.  In all honesty, it doesn't really help all that much.  All the pages suck.  They all involve some sort of attempt at trying to justify that you are in a better place while soaking up all the amazing moments with your siblings and yet ultimately fighting the incredible pain of missing you all at once.  It's another tough picture to paint adequately.  It's something no one should have to fathom much less endure, and anyone who gets it sadly is living it.

Your entire life was such a struggle for you, you faced so many challenges and you were in some amount of pain probably close to always.  It isn't a life that we would have chosen for you, nor is it one we would wish upon any person.  Yet it was the life we came to know and learn to live with and some days you even put on a smile.  It was so hard for us to watch you go through everything you had to, and I don't believe those who would try to tell me you didn't know any different. I am sure you were exhausted seizing all the time, not being able to eat by mouth, and not being able to tell us about anything you wanted.  I can only imagine the amazing things you are up to now that you are finally free.  I am sure my heart would be beaming if I could sneak a peek through some tiny window into your new world.  This hope of you being the 5-year-old you never could have been here, is what aba and I remind ourselves is what is for the best.   It's our only consolation prize.

Laeya told us over the weekend that you have come to visit her a couple of times.  She said you are "a complete girly girl".  I asked her if your hair was done, and she said "it's always up in the cute pigtails with the bows like nurse Paige gave you".  She said your voice sounds like a mixture of Noam's and Meena's...I wish I could hear it because I cannot really hear it in my mind.  She said you have been hanging around with saba and that you and Harper have had some playdates.  She said she knows you have at least one other friend, but she can't remember if you told her the name or if she just forgot, but you were going to see her later on that day.  I am glad she sees you in her dreams because I know how hard your absence has been for her. 

As always I hope you are staying safe and know how much you are missed and loved.  Until next week.

Love always,
Ema 

5 Months

Dear Sonzee,

Today marks not one, not two, not three, not four, but 5 official months since we last cuddled.  As usual, writing that first sentence brings tears to the forefront of my eyes and a huge lump into my throat.  This month has brought about some changes in this whole grieving journey, I wonder if you noticed them yourself?  I think some might call it growth, from my perspective, and for me, it is honestly just a significant amount of sorrow that I didn't know could even be added to the experience.  If I take a step back and focus on you than I can see the whole potential growth concept.  I hope my actions will further allow you to move forward in your journey.  Don't get overly excited, because you didn't turn 18 yet, so my freedom for you is only being given in tiny tiny increments.

Man, this parenting thing has gotten really complicated these past 5 months.  I am so confused about where I stand as your mom and what that actually means.  I have no idea what any of my actions mean for you.  I have no idea if anything I do even impacts you at all.  Do you hear my thoughts or are you able to read my words?  If you can and do, I wonder if these letters to you make you feel guilty at all or keep you from doing anything out of fear of breaking my heart more?  I pray that isn't the case, but at the same time, I won't ever be able to let you go enough to stop them.  My only hope is that eventually, we can both find a balance respective to each of our new lives.

During this last month, your siblings all finished the school year.  They have yet to finish the workbooks I got them for supplemental work back in March, but maybe by your 6th-month post, they will have completed them.  Noam has started to bring everything plus the kitchen sink into his crib at night to go to sleep.  Your book has been a staple there as well.  He is really into Llama Llama lately but still gives some time to the Pete the Cat books.  He is talking up a storm and still picking on Meena, which is honestly just so funny (although, not so much for her), but we really cannot figure out why he goes after her.  Maybe it is because she is so chill it makes her quite the easy target?!

Tzviki and Noam are becoming pretty close pals.  It has been really neat to watch their relationship unfold.  It is filled with hockey sticks, wrestling, ball throwing, and just random shenanigans that are really not safe.  Tzvi and the girls have been spending a lot of time building lego communities and when it's cooler in the evening will go ride bikes or scooters out front.  Tzvi would play hockey all day out in the heat, but I am just not up for that during the 100+ temperatures.  He has still been pretty quiet about you being gone, but he is a sensitive little guy, so I know he is internalizing it all.

Laeya and Meena have continued including you in their games with the Sonzee Bears.  They are both getting on me to get the books made of you and each of them, I have Laeya's in the shopping cart and just need to buy it, Meena's I need to start.  Everyone has been helping with their plants, but it is really not going so great.  The milkweeds are doing fabulous, but we have lost all the flower buds on the Kangaroo Paws.  I am attempting to get new ones to grow.  The stems are still tall and not droopy, so I know they are alive...they just aren't as easy as was suggested.

I hope this last month has brought you new happy times and positive lessons.  I hope you are continuing to make friends and that you are meeting nice people.  I hope you have explored more of wherever you are and spend your days doing whatever it is that makes you happy.

You are missed and loved immensely and I find it hard to believe the next monthly letter I will write will be in honor of half of a year without you being here.  I think it is going to take the next month to process that fact alone.  Until then my little bear. 

Love always,
Ema

Another month

Today is day #1 of July 2020.  This changing of the month didn't seem to come at me as quickly as others.  Maybe I was more prepared? Maybe I am just getting used to it?  Maybe I just feel removed from the concept of time?  I can't figure it out, and honestly, I don't know if I even care to try.  I will just accept it for what it is.  Another 30 days has passed, and another 31 to go until I am right back into this cycle of having lived another month without her here.  On Friday she will be given her 5-month glow in the dark rock, just another tangible reminder.

This July is going to be so different than how we have spent July's in years past.  I suppose it is how it is supposed to be, but I am not an incredible fan of all of this change.  There has already been so much unpredictability with this entire year and every moment since February 3, so I am really hoping for some peace and calmness to be blanketed over me.  Our option b for July is also already seeing some kinks, so part of me says if there wasn't covid19, people could come and find me on the couch permanently for the next 31+ days with some tea, wine, and ice cream.

For now, I will bid a complete farewell to the first CDKL5 Awareness month that we endured without our little bear present.  I will go into the front yard and remove the awareness yard sign and tuck it in its place, ready for its debut in June 2021.  I will attempt to prepare myself for another month of new Sonzee-less family experiences and memories, and I will give myself a quick pep-talk while trying to reassure myself it will just be another month.

21 Weeks

My Dearest Sonzee Bear,

How are you doing my love?  Another week has gone by and by the time of my next letter to you, another month as well.  The months passing hurt more than the individual weeks.  Maybe it is because that means 4ish of them have come and gone without you being here?  Maybe it is because seeing a new month makes it in my face more real that you are gone?  Each week I can feel myself believe that simple yet obvious fact a little more.  By little, I mean nonmeasurable to the naked eye, but internally I know it has occurred.

I found myself watching two different movies this week at night after the house was asleep, both around the concept of grief.  I am not sure why I considered it to be the best of ideas, but in the end, besides finding myself hysterically crying at 1:30am on the couch, I think I needed to watch them?  I am not sure I am as strong as the characters, but the messages resonated and I have been playing them in my mind on a loop. 

I feel like I am stuck in this space of trying to move forward without you, while not feeling this suffocating guilt and feeling that that would mean I am leaving you behind.  At the same time, I actually wonder if my being stuck is preventing you from being able to move forward yourself?  I truly want your soul to be able to do what it needs to do now without it being me who holds you back.  There were no clear cut answers when you were here, and there are certainly less with you gone.

Wednesday will represent the second July 1 since the summer of 2014 that we will not be in NY.  The first was the year you were born because we were so afraid of being in the middle of nowhere so soon after your epilepsy diagnosis and now the first summer after your death.  In a sense that almost seems fitting, but the reason for not going this year was made more by forces greater than our control vs our desires.  Although to be 100% honest I am not sure I am ready to be that far away from you for so long just yet, so maybe you played a roll in the way this summer is playing out?

For the first time I am doing ESY at FBC this summer (over zoom) and we begin officially on Tuesday.  I am overall excited, but a little nervous because instead of tagging onto circle times like how it was during spring, this is me being front and center with each kiddo.  I am sure by next week I will feel better about it.  Whether fall classes will be online or in-person have yet to be determined at this point, and I am unsure where my opinion lies.  For different reasons than everyone else my biggest fear for returning to the main campus is whether I can actually walk into the building and walk down your hallway and walk into any classroom you have ever been in or the room has shared a bathroom entry with.  I honestly don't know how in person would work at west valley either because I am afraid the reminders of it all staring me in the face and surrounding my day might cause me to break down multiple times a day.   For now, I will just focus on taking each virtual ESY day as they come and just wait and see the options we are given for the fall and how I am feeling when a decision needs to be made.

As always, I hope you are staying safe and healthy.  I hope you are having the most fun possible and that you aren't missing us all too much.  I hope you feel safe and comforted and that you know how much you are loved and missed.

Love always,
Ema