Thursday, September 24, 2020

Happy 5th Birthday Corrinne

Dear Corrinne, 

Today is such a special day, it is your 5th birthday.  So many of Sonzee's friends have turned 5 since she has passed, but for some reason, today, your birthday is the one hitting me the hardest.  Maybe it is because you were the only friend we had come share in her mock 5th birthday party?  Maybe it is because of the parallels in yours and Sonzee's journey?  Maybe it is because I haven't let myself fully grieve over Sonzee never officially turning 5 and I was so afraid for your family that they would end up like us and today would be happening in a completely different manner?  Maybe it is because I personally feel so invested in you turning 5 that I am a mixture of relieved, ecstatic, and beyond grateful that you have made it to this milestone?  Maybe it is because I know that you being at Bear Pines somehow means Sonzee is celebrating with you and it feels like life is coming full circle?

You are such a special girl to so many.  We have been so blessed to have you and your family in our lives for 4ish years.  Your mother is one of the few people in this world that I can and have shared my darkest fears and feelings with and who has been there to help me feel almost normal the last 7.5 months.  She is for sure your fiercest advocate and a primary reason you are able to celebrate in all of your glory the amazingness that is today.  Sonzee was so blessed to have met you in FBC's Friday group, it was because of your story that we finally took a tour at Ryan House.  You and Sonzee shared a knack of making your (same) GI doctor experience firsts with your insane dysmotility...but you, my friend, continue to just travel along with a divalicious smile, painted nails, beautiful sassiness, and a requirement to travel with a mini fridge.

I am just so thankful that you honored us by accepting the invitation to Bear Pines for your special day. I hope it is your best birthday ever, I don't doubt for a second that you will be and have been spoiled beyond comprehension, and rightly so.  I hope you know how much your life has mattered to ours.  On your 5th birthday, we wish you a year of few hospitalizations, no new diagnoses, calmness, health, happiness, and amazing memories to be made with your friends and family.
   

Love, 
Sonzee's Family


The Mighty Contributor

Tuesday, September 22, 2020

Avoidance

During our last grief group, the question was asked, "how are you managing your grief?".  These questions don't always yield a cookie cutter answer, I suppose that is the exact point of why they are asked.  Some people volunteered to share their responses, I had been thinking about my response wondering how exactly to frame it.   I wondered if my answer was going to be right. Knowing that whatever my answer would be, is the only right, but yet not convinced.  Then it became my turn.  I mentioned how I blog, I had forgotten or rather at the time didn't realize that me posting my daily throwbacks was also something I had been doing as a method, and then I said what I consider the biggest way I have been managing my grief...by avoidance.

I can think back to all of the amazing grief support books I engulfed myself in immediately after she passed.  I can see the words written stating how letting yourself fall into the grief eventually gets easier.  How it is better to allow yourself to allow the grief to happen when it presents itself because if not it can eventually be more challenging to push it down, and then you are hit by a tsunami rather than 6 foot waves.  I remember thinking about how I will make sure to feel it always and to deal with it as it comes.  It is comparable to all of those things you tell yourself you either will or won't do when you first become a parent.  If I had said openly to anyone on this journey that my intention was to never let grief suck me in I am sure they would smile and nod and think to themselves, "ya okay".  I can now remember every time I have reminded myself over the last 7.5 months of these facts when I force myself to swallow the grief up and close my eyes in my best attempts to squash it.  I can see the words written on the page every time I tell myself nope, not now, don't cry, later, now isn't the time.  Avoiding has become my "management".  It is honestly so much easier to act like everything is fine than acknowledging the reality.  Trust me when I say, the pain is far too horrible to let it take over at any point.  No, I don't want to deal with it.  Yes, it is easier to lie and pretend everything is fine.  

It becomes this endless grief version of "if I give myself a cookie".  If I admit that she is gone, then I have to admit that it hurts.  If I admit it hurts that means I have to allow myself to cry.  If I allow myself to cry that means I have to admit that this pain and the reality is real.  If I admit that this pain and the reality of it all is real, then I had to admit that she isn't coming back and that this is going to be forever.  If I admit this is forever, it is too much so she can't be gone, there is nothing to mourn because she isn't not here and therefore I don't have to cry and I don't have to feel this horrible pain.  To admit to myself at only 7.5 months into this journey that it is going to be like this forever is way too much to accept.  So for now, I acknowledge we are no longer a physical party of 7, and I acknowledge that I am not an active member of the special needs party, but as far as really managing my grief...avoidance of the realness of the situation feels much much easier.

The Mighty Contributor

Monday, September 21, 2020

33 Weeks

Dear Sonzee, 

For weeks, essentially since right after you passed I type in "countdown timer" to make sure I am writing the accurate heading.  You would think since it is just the following week I wouldn't need that confirmation, but each time I type 02/03/2020, 1:08pm, and check the box that I want the countdown to include weeks, days, hours, and minutes.  It almost mimics a pregnancy countdown, except there isn't going to be an end at 40 weeks.  

This weekend we celebrated Rosh Hashana.  I ordered a beautiful flower bouquet in your honor and it sat with us at the table.  I moved it to the counter now in front of your yahrzeit candle holder that still remains on the counter.  I had some flowers from our last Shabbat at Bear Pines in there last week, but they finally needed to be purged.  I ordered a bunch of 24-hour votive candles inside red holders and they came today.  I will use those moving forward for all of the times we light a candle in your honor.  I hope Saba likes red because he will get one by default.

I started to order winter clothing for your siblings.  Bubbie and pop-pop got them their jackets and what not with their help.  It is really exciting to be preparing for an additional season to just "Phoenix".  I did have to google clothing for winter.  I know it is technically early, but our Bear Pines neighbor told aba that sometimes it can start to snow in late October.  It is still so crazy to me that we live less than two hours away and the weather is that much different, but as a comparable it is currently 54 there and 84 in Phoenix.  The warmest day there is Thursday this week with a high of 80, otherwise, all the highs are in the 70s and the lows in the 40s.  We all have the same fall break this year, so we will be heading back.

Auntie A has purchased some fun new work items and we will soon be having some custom mugs and what not for Bear Pines.  I love her desire to play because it keeps benefitting Bear Pines.  I am wondering if I should just leave a card with her etsy info randomly around the house to send some subtle messages to guests.  She has really helped everything in my mind come out perfectly. 

Anyway, I cannot believe it is another week without you here.  Remember you are loved and missed.
Until next time.

Love always, 
Ema

The Mighty Contributor

Wednesday, September 16, 2020

32 weeks and 2 days

Dear Sonzee, 

I am sorry I am late writing to you.  I feel like this past week was one of those filled with so much chaos but yet in the end, there was an overwhelming sense of peace.  Bear Pines is officially open for business.  I say it with italics because we have our first guests staying next week, but the website is not 100% ready for sharing.  Aba and I spent 5 hours together finishing everything up this past Sunday.  The painting portion hadn't even been started, so Aba is going to drive up before Rosh Hashana starts to see it in person and bring back the 3 loads of bedding laundry I ran out of time doing that I brought back to Phoenix.  (I am really pushing hard here for a new washing machine...he hasn't exactly taken the bait yet, but I sense it could be on the horizon).

It feels amazing to have checked off essentially all of the items on the inspection report.  We also took down the eyesore of a shed in the backyard and it will be converted into a playhouse for your siblings.  It is close to 500 square feet, so it is almost a mini house itself.  I will be purchasing a matching wind chime for their porch in your honor.  I mentioned to a friend I would most likely cry when everything was all finished, and as I took a look around Sunday I did just that.  There are just so many emotions.  I know you are with me when we are there.  You influenced literally every nook and cranny, and yet this house wouldn't be ours if you were still here.  It is so difficult to put into words everything that is my mind regarding that simple fact.

I am on week 6 of direct therapy this week and during the entire virtual school year, not one kiddo on my caseload had seized during a session, until yesterday.  Just about every single child I saw yesterday, did.  I don't know what to make of it.  I mean essentially absolutely nothing because it had nothing to do with me, but I did joke with Auntie A that since I was in your bedroom for all my virtual sessions, you wanted to ensure I remembered how that was you all the time.  I didn't even know how to feel...my heart breaks for every single parent, and all of the kids.  I wanted to scream through the screen how I can relate to whatever they are feeling, I still have this need to say "ME, OVER HERE, I GET IT, MY DAUGHTER DID THIS ALL THE TIME.  I LIVED THIS LIFE, I WAS ONCE IN YOUR COMMUNITY."  Instead, I just stare blank-faced, wondering if at some point I will have to suddenly turn off my screen because it reminds me too much of that life, the one I am for all intents and purposes, not really part of anymore.

On that note, I emailed one of your doctors today to say I missed her.  Weird huh?  I had composed an email so many times, but always deleted it, today I finally pressed send.  It's so hard to have not only lost you but lost so much of the life we lived for close to 5 years.  Close to 5 years that were literally an entire lifetime for you, but for us just a small but yet large portion.  These doctors were intimately attached to us and knew us on levels that some of our friends won't ever.  To have lost our frequent visits feels like adding salt to an open wound.  It seems I am still trying to figure out my place, I think that is going to be an always, forever, and from now on sort of a deal.  I received a reply within an hour (I am honestly not one bit surprised), shared it with aba, but I can't reply.  I tell myself it's because it feels almost awkward to reply so quickly, but I think the reality is that I am stringing it out so the conversation lasts another day?  

Someone asked on Facebook last night about doing the clay hand molding.  I was so excited to share our experience, I even included the 39-second video pop-pop took for the comedy.  Of course, that resulted in me watching those 39 seconds on repeat for over an hour.  It was just 4 days shy of us officially having to say goodbye, but looking back at it, it was such a fantastic experience and will always be such a great memory.  The screaming, the laughing, your siblings being absolutely ridiculous, you being a fairly decent sport considering, your entire life and our life with you captured perfectly in 39 seconds.  Although, I do wish pop-pop kept the camera rolling...there were definitely some gems of verbal exchanges that occurred only after it was shut off...but I am so grateful for what he did record.

Anyway my love.  My heart misses you beyond words.  I hope you can feel that and the love from down here wherever you may be.  I hope wherever you are is treating you better than we ever could. Until next week.

Love always, 
Ema

 

The Mighty Contributor

Friday, September 11, 2020

What's there to say

I have been part of the CDKL5 support group for over 5 years.  For many years I was extremely active, sharing our experience with Sonzee and Sonzee specific related information with no problems.  The older she grew and the more involved she became I found participating to be extremely emotionally draining.  I always hesitated because those who were new members would eventually find their footing and until they did, they didn't necessarily want to see a 3 or 4-year-old potential version of their child in Sonzee.  Maybe that was my personal take because children presenting like Sonzee don't necessarily reek the hope the newly diagnosed parents are seeking.  And now...220 days since she passed away, I represent everything they fear, so what's there to say?

This week a new mom introduced herself and I am assuming my 30-day snooze needs to be reset because I saw it.  This week for the first time in months I scrolled down the comments and read everyone introducing themselves and their child.  Then for the first time in I don't know how long I clicked into the comment space, but then I sat there, rereading the introduction of the mother, reading all of the comments, tears filling my eyes and left wondering, what's there to say? 

What is there to say besides, I once had a daughter who went through all of the same exact challenges as your child and despite the hope you have, the reality is, at some point, they might finally be at peace, but that means you are part of the other CDKL5 group of bereaved parents?  There is no way to share her journey without stating the obvious fact, she isn't here any longer. Who wants to hear that?  Because I don't even want to say it.  

Really, what's there to say?

The Mighty Contributor

Wednesday, September 9, 2020

31 weeks 2 days

Dear Sonze, 

It's been less than a week since I last wrote to you, but I didn't want the week to slip by.  It's funny, even though it is never that long between my letters to you, I find my mind fills with thousands of thoughts I have to sort through that are all related to you.  This week one of your friends is having a challenging time.  It seems whenever this has happened since you have been gone my brain and my heart have such a difficult time.  I can't seem to figure out how it makes me feel or what I should be feeling.  I can't figure out what I am thinking, I can't make any sense of any of it and I don't even know how to try and start to.  Then it starts to feel like every CDKL5 sibling of yours is having a rough time and both my mind and heart go into shutdown mode.  It becomes too much.

The further into this journey of navigating life without you, the more obvious it becomes that time is not going to change any of this.  It is just going to be something that passes by and something that makes things more confusing.  Supposedly the benefit to time is that I will learn to adjust in terms of compartmentalizing or simply figuring out various ways to live with the grief, whatever that means?!  I am still waiting for someone further on this journey to tell me that pain stops, that the overall hole all throughout me will become filled, and that the challenges of life without you will disappear.  (sidenote: I probably wouldn't believe them if they said those things anyway, but I will wait)

Someone shared with me a Facebook post about family pictures from their friend who has sadly also lost a child.  I wanted to just post it myself and say "this".  I was hoping this person was behind me on the journey so I could maybe hope that the fact that our feelings are exactly the same wouldn't make me feel slightly defeated.  Sadly for me, this mom is further along, so while it feels reassuring to know my feelings are similar to others in the same position, it wasn't uplifting to know that the feelings I have most likely won't go away.

This week I mentioned to one of your friend's mom's that I have zero knowledge of 5-year-old Sonzee seizures.  The statement struck me after I said it.  Firstly, how was it that you didn't even live 5 years when at times it felt so long?  How is it that I gained so much knowledge in just 4 years 11 months and 22 days?  How is it that life goes on for everyone your age and you will forever remain "8 days shy of 5"? How is it I still have so many tears?

Despite it all, I still wouldn't take you back to have you seize "just" one second more or to have to be hooked up to a plethora of tubes or to have to take mega doses of multiple medications or to be limited by and in your body.  Your body is where it needs to be, it's just indescribably painful that that place isn't with your siblings, aba, or myself.  We love and miss you beyond words.  Maybe we can meet in the space between?  

Love always, 
Ema

PS: It is supposed to be 33 tomorrow with a high of 58 and Ema does not have her puffy jacket everyone makes fun of her for wearing in the 70s so if you could be gentle with your breezes that would be much appreciated.

The Mighty Contributor

Thursday, September 3, 2020

7 Months



Dear Sonzee, 

Yesterday marked 2 years since we gathered with friends and family and saw your swim spa lifted 100s of feet into the air by a monstrous crane that blocked our entire street in order to place it in our backyard.  The spa still remains, but 7 months ago you left it for only us to use.  I haven't entered it yet once.  I tell myself maybe I will take up swimming laps, sit in it to relax, or maybe go inside to be with your siblings when they go, but I just can't, I am unsure if I ever will.  Aba made sure to take you in as much as possible during your last week, I wonder if I should've let him take you just one more time?

When I think back to those last few weeks with you, it was such a balance of fighting against time but letting you rest and being as comfortable as possible.  I think we did a good job? I am relieved 7 months later there is no doubt in my mind we did what was best for you.  What doesn't feel any better at all is that we had to make any of the choices we ever had to for you and that you aren't here with us.  I wish I could explain how much I truly do believe that you are in a better place, but simultaneously wish you had a different mission that didn't require you to suffer and then leave us so quickly.

7 months.  In just 2 weeks we enter into a new year on the Jewish calendar.  One you won't have even been in for a second.  That is a challenging concept to process.  It seems more difficult to swallow than entering into a new month.  We are filling out a 1/8 of a page memorial text for you and saba for the Yizkor book.  It was difficult to figure out what to say. I will admit Aba and I made some jokes in the process.  We couldn't exactly write "hope you're doing well", or "we are so proud of you", so we stuck with "In memory of".  I am honestly relieved corona will keep me from going to shul because I am still not ready to even just sit in the back and listen to that service, but I do need to refresh my red candle stash.  

Don't forget you are forever loved and incredibly missed.  Whenever I am ready, I hope you know where you can find me.  I miss you beyond words little bear.

Love always, 
Ema


The Mighty Contributor

Monday, August 31, 2020

30 Weeks

Dear Sonzee, 

It's been 30 Monday's since our last snuggle.  I still cannot figure out how so much time has passed but yet it feels like it was all yesterday.  This week your siblings asked each other and aba and I what our favorite two memories were of you.  I could tell aba was as frozen as I was with the question and I was thankful I was able to give a quick response without completely falling apart.  It really makes me so happy they bring you up and are comfortable sharing their feelings about you, but it is still hard for me to always manage to keep the tears at bay.  There are times when I have no problem talking about you in an upbeat happy manner, and then other times where it's hard to form any thoughts without the tears and the lump in my throat. 

I have found myself lately staring at the sky trying to see if I can find some sign from you in the clouds.  I keep wondering if I stare long enough I will be able to make myself think you are sending me some sort of message.  All the while I think of how insane it is that I am actually doing what I am doing, because what am I actually expecting to see?  Honestly, I keep trying to find signs of you all over...I think my mind thinks that if I do then it means you are closer to me?

So many of your CDKL5 siblings are getting older, their families are faced with all the emotions that come with life with a special needs teen or adult.  Something we won't ever have to experience.  Something we won't ever have any knowledge of since you left us so much earlier.  I have started to integrate more into the bereaved mom support groups.  Reading the posts still but never having commented, liked, or mentioned your story.  I am not exactly ready for that just yet, there are more times than not that I see a fellow bereaved mom write a post that I am like "yes, that", or "yes, you are not alone".  I just don't think I can bring myself to admit I belong in that group.  I am feeling less and less like I belong in the special needs groups.  I still keep myself in them but typically they are muted and if they pop up, I hardly comment.  

Today happens to be 12 years since Aba and I got married.  When I think back to that day when we were essentially two kids with no cares in the world but a blank canvas, I never thought that I would find us listing our accomplishments and adding buried a child.  It makes me really wonder what will have occurred in another 12 years when we should have been celebrating your sweet 16.  It almost makes things worse knowing and actually seeing that there is always going to be something of yours that should've been but wasn't. 

We brought you a special rock from Flagstaff that sparkles, and one of Tzvi's friends painted you two pretty rocks that are now placed by you.  Auntie A is working on your 7-month glow rock and MoMo asked to paint you his own as well.  We gave the final approval for your stone, bench, and candle holder.  They look perfect on paper so while I won't ever be ready to see them physically standing, I am looking forward to having a bench to sit with you and to see them in person.  Any time over the next 2-3 months we should be receiving the call that are ready to be unveiled.

I hope you are doing well and know you are loved and missed.  Please come and visit someone I know so I can hear how amazing you are doing.  

Love always, 
Ema


The Mighty Contributor

Friday, August 28, 2020

Floating

I constantly find myself floating between two worlds, a world that included Sonzee as an active member of our family and a world that no longer does.  I think floating is the best word to describe my feelings because it describes an act that is noncommital, unsettled, and indicates fluctuation and variability. I am not fully part of either world, but I am also not far from either at any given moment.  I hover in between both because it seems impossible to leave the world of her being a physical member behind and to fully accept the world where she isn't here. Will I ever be ready? Do I even have to be? 

A significant part of being in this floating position is feeling confused and a sense of guilt or injustice depending on which way I go. I can't stay fully in the past, it is physically possible and isn't really healthy emotionally.  I can't allow myself to move completely forward either because she needs to come. There are times when seemingly straight forward questions, such as "how many children live in your house?" lend themselves to more complicated answers. I don't know what the right answer is.  The question itself is innocent, direct, and written in an almost creative manner.  It is written to yield a numerical value, a value that is the absolute current truth, but yet when writing it, it leaves out so much.  The answer feels like a lie to write down on the paper because it wasn't always the truth.  

Math is direct, it is black and white, one plus one will always equal two.  But, thankfully in math, you always need to "show your work". You have to explain how you got the answer because even if you know how you got to the answer, not everyone else does.  The answer might end up being more than the simple question that was asked required, but life isn't always simple. 

Maybe floating serves a purpose? Maybe it is some sort of mental balance? Maybe it is where I will always find myself to honor life with her and life since she physically left.  Maybe it is exactly where I need to be? 


The Mighty Contributor

Tuesday, August 25, 2020

29 weeks and 1 day

Dear Sonzee, 

I am having one of those periods where I feel like I am being consumed by my missing you.  It's the time where the tears aren't far from falling or just fall on their own and it is more difficult to swallow them and pretend like I am not actually a bereaved mother.  I actually commented in one of the "special needs moms" groups I have been unable to leave but typically have on mute and I wrote about you had given me a plethora of experience in the area the poster had stated but that you had died.  It was met with a fellow bereaved mother who buried her little girl, also at the age of 4 just shy of turning 5...12 years ago.  She also had seizures.  I went out of my comfort zone and sent her a private message.  I supposed you are bringing her into my life for a reason, so I will embrace it.

Last week a few of "my kiddos" at work received some of your items we had just sitting around collecting dust.  I decided I am going to compile a book of pictures of everyone who is able to benefit from your things, I just decided as I am writing this that I will call it "Sonzee's Stuff".  It will be another one of those double edged swords, but ultimately knowing we are able to help others keeps it possible.  I am working on a couple of other projects in your honor, and I am so proud of your story and the continued chapters that are still being written without your physical presence.  

I haven't made it "Facebook official" yet, but your brother is retiring in his red, white, and blue hockey team for a team with two different colors.  I am waiting for all of his gear to be ordered or for him to at least sport a team shirt beforehand.  I keep wondering what you would think about no more red hat or comfy red boots?  I mean lets be honest, you only used the boots as projectiles anyway, so maybe you wouldn't have minded to trade them in for a different pair?  I am nervous for the day it comes to fill out the extra items form because I always made sure you had your own set of items, and made your sisters share.  I won't need an additional blanket, an extra shirt, sweatshirt, or beanie just for you.  Crazy the things my mind tries to prepare itself for.

The finishing touches are almost all complete here at Bear Pines.  I think once the final picture is hung and the interior is complete I am just going to sit on the floor and cry.  It's just such an overwhelming feeling to know this entire house is based off of you and your essence.  Anyone who stays here and knows you will be able to pick up on all the little bits of Sonzee inspiration.  I might be setting myself up for disappointment, but I can imagine those who knew and loved you having to hold back a tear or two themselves when they walk through the door.  It's such a crazy thing to feel you here.  So much so I haven't physically been to your grave in over a week and I am doing okay.  (Auntie A and Uncle Mathias checked on you after the storm last week and Facetimed me while they were there, they appreciated your extra special breeze...and Auntie A was better prepared this time.)

I finally gave in and allowed your sisters to watch Descendants.  It was not at all what I anticipated, but to be honest I never even looked into what it actually was and thought it was meant for older kids. I am somehow forgetting the whole aging process and that if you should be 5.5 than your sisters can't still be.  It was a really good movie honestly, and so naturally it led me to listen to some of the music from all 3 movies, and so I will leave you with this.

And you can find me in the space between
Where two worlds come to meet
I'll never be out of reach
'Cause you're a part of me so you can find me in the space between
You'll never be alone
No matter where you go
We can meet in the space between
Love always, 
Ema 


The Mighty Contributor


Friday, August 21, 2020

Knowing the why

There are just some days and weeks where this journey of grief is more challenging than others.  I wish I knew what made that the case.  I wish I knew why there are times I am seemingly fine and other times where I feel like I am a dam about to break.  A little over 6 months in and I am getting better at recognizing when one of these levee failures is on the brink, but I have yet to master the art of being okay enough with it to just go with its flow.

I still struggle with fighting the inevitable until I have zero say in the matter and the tears come out despite my best efforts. All the emotions are just too much to handle and then every aspect of my life feels the weight.  For some reason, rainy days seem to make things worse...maybe because they resemble tears and I know it's time for me to just give in to the grief?

I can name the little bits of life that are contributing to the soon to be unavoidable tear-fest.  I suppose I should be thankful I am able to keep myself from breaking down after every little thing the moment it has occurred.  I suppose it is healthy and it is one of those necessary evils, but I do wish I knew the real why. Like why after a certain amount of time looking at her pictures and videos, it is just simply too much?  Or why there are certain comments, especially the innocent ones, that take my breath away or pierce into my heart like a dagger?   And why I have to rationalize that she really is in a better place. 

But then I also wonder, would knowing the why really make a difference?  

The Mighty Contributor

Monday, August 17, 2020

28 Weeks

Dear Sonzee, 

The day has almost passed me by without me even realizing I had not written you your weekly letter.  When your 6 months fell on a Monday it threw me off completely with the weekly count. I have to admit that things have been so crazy I had to go back and adjust one of my previous letters to you because I had the wrong week listed.  Between going and forth between Phoenix and Flagstaff so often, my starting virtual FBC, trying to figure out what we want to do with the school year with your siblings, and Tzviki's hockey schedule it has been one hot mess in my brain. 

Tzvi tried out for a few different travel hockey teams and to be honest his choice isn't exactly the one Aba and I are sure of, but we are torn on if we just let it play out or if we should make the choice for him?  In the end, while drastically different than any choice we were ever faced with for you, it is still a balancing act of making sure we follow his best interest but make sure his happiness is the top priority.  This hockey life is honestly no joke.  In addition to making his team choice is also the effect it will have on us coming back and forth to Bear Pines.  Honestly, I am just not sure I am going to be on board with any team this year because of the weekend requirements at his age level.  

This past Friday marked the final payment for your gravestone.  I remember when we first spoke to the office about the payments now seemed so far away.  I sometimes wish time would slow down, but really the only time that would be nice to freeze and have on repeat is during your first 6-8 months of life. Those videos are my most favorite to see in google photos, and they bring me back to this ignorantly blissful time before all the complications of life with CDKL5 really came into focus.

Overall work has been going well.  I am loving getting to virtually see familiar faces from last year and get to meet some new kiddos.  The most challenging times are the ones that just come out of nowhere and bring me back to a specific time with you. Like last week when we received a message from a parent canceling our session due to a seizure.  The moment it came through my heart stopped and my immediate thought was I wondered how many times I had written that same message to therapists and your teachers.  My next thought was how even though I wrote to the parent I completely understood, she doesn't know how much I really do.  There are other times during sessions where I see siblings doting and I smile thinking about all the times yours did the same.  I have only had to turn off my camera once over a situation that made tears come to my eyes, I don't think anyone even noticed so I think I am doing as good as can be.

While I have yet to see you in my dreams, I have been told by more people that they have gotten to see you.  Apparently, you are just doing amazing, swimming, and in general giving off an amazingly happy and independent vibe.  It brings me such happiness to hear.  Aba thinks I need to be more open to seeing you, I am just not sure if I could handle you leaving me, so as I am sure you gather, I am hesitant.  When we are both ready I am sure I will get to see everything for myself.  

On the whole, everything here is status quo.  We miss you incredibly and hope you feel that and our love wherever you may be. Until next week.

Love always, 
Ema

The Mighty Contributor

Thursday, August 13, 2020

Double Edged Sword

I have a lot of friends on Facebook who have had children in sync with ours.  With a few of them it was almost a running joke when one of us would announce her pregnancy, the other would be right behind.  In general, there is at least one other friend of mine who has a child the same age.  Yesterday the back to school signs were taking off in full force on my feed, some were from Monday just showing up, some were from Tuesday, and some from yesterday.  I saw two of my familiar family's only to be utterly confused. The first sign said "First day of Kindergarten", I thought hmmm...I swore we had kids together...but going through my list of kiddos nothing clicked.  I continued to scroll and the next set of signs read going into third grade and going into Kindergarten.  My mind said  I swear we had kids at the same time, why can I not figure it out?  I zoomed into the picture to get a better look at the child, hoping that would nudge my memory.  I was confused, I squinted and said in my mind, Meena (our soon to be 2nd grader) is going into 2nd, right?  Blankness in my mind...and then BAM, I knew it...I DO, rather I should? have a kindergartner also...Sonzee was going to be in Kindergarten this year.

I just put a rock on her grave announcing this specific missed milestone, her aunt even made a "back to school" sign, and I took a picture with it, but clearly, that wasn't enough for my brain.  How did I forget?  Did I even really forget, or is it simply the fact that she isn't part of our daily routine anymore so it's not in the forefront of my mind? I spent so much time during her life trying to disassociate Sonzee from any of the typical children on my newsfeed that staring at a typical 4/5-year-old didn't even register to me they were the same age.  I used to be distracted by caring for her that it essentially softened the blow so to speak when the fact that the children I was looking at were in fact her age.  Now, even that is gone.  Now it is left solely up to my mind reminding me not only what developmental stage she had yet to master, but also of what age she would be at.

One of the most challenging aspects of processing her death continues to be thinking of her beyond that sassy 4 years 11 month and 22 day year-old little girl.  I suppose seeing the children around her continue to grow up and celebrate another year of achievements and milestones will be my constant reminder of what could have been in both her life with CDKL5 and the life we never knew of her, and as it has been on this entire mothering journey, it will continue to be a double edged sword.


The Mighty Contributor

Tuesday, August 11, 2020

Sway Fun


Sway Fun-Inclusive playground activity

Since we have closed on Bear Pines we have been in Flagstaff more than Phoenix.  I mean when you compare 118-degree highs to 85 it really isn't that difficult to make the choice.  Despite my working virtually, the kids do not go back to school for at least another 10 days, so it has been nice to have a change of scenery.  We typically stay in the neighborhood where the house is, they have a small park and some wildlife areas, but the kids beg us to go to a park about 18 minutes away because it has a skateboard area with ramps as well as a huge climbing structure and zip line swings.  We have obliged twice.  The first time I hung with Sonzee's little brother in the little kid play area, he tends to just climb up and down steps 1000 times and never slide down the actual slide.  The second time, we all went to the area that had the "fun" activities, and the little man managed to still find a smaller slide with 5 steps to continue his routine (it should be noted he FINALLY slid down).  It was within 1 minute of stepping onto the mulch that this "sway fun" came into view.

My initial reaction was to be excited, I mean it isn't very often that a park has anything that can even be confused with maybe being "accessible" and here this was staring me in the face.  I also noted that one of the ziplines was a seat with a top harness bar contraption, so that too could house a differently-abled child (but not Sonzee).  Noting the ramp, I immediately said, "oh wow, something for Sonzee".  The kids ran up to it and I actually told them to get off because it wasn't meant for them, it was meant for Sonzee or a child who was in a wheelchair.  I don't know why, but something about them being on it when she wasn't there to be with them made me say it.  I could envision her and I just chilling in there while her siblings ran all around, in fact just staring at it I could see her bright pink wheelchair facing out to ensure her view wouldn't be blocked by the structure itself.  I could see her sitting with her leg crossed over and her playing with her hands and pushing her pacifier out of her mouth, but then reality snapped me back.

She isn't here, and if she were, we wouldn't be in Flagstaff, none of this would be happening, and so it seems I am just left with a dream. A dream where it all could be possible, whatever that even means.  Instead, I sat at the park with my two boys and two girls and to any of the other families sitting around on their chairs smiling at Sam racing the kids we were just a perfect family out at the park.  Maybe they even wondered or thought about how we must have waited between our middle daughter and having our youngest son because clearly there is different age gap than with the older kids.  They have no idea there is and always will be a missing piece to the perceived perfection.  They have no idea that me not being able to take my eyes off of the Sway Fun had nothing to do with them sitting inside it, but rather the little girl who wasn't.

The Mighty Contributor

Monday, August 10, 2020

27 weeks

Dear Sonzee, 

Hi baby girl!  It's been another week since we were together.  As time seems to get further away, the length between my weekly posts is also starting to feel like forever, yet the same 7 days go by.  I am sitting on the porch at Bear Pines drinking my coffee attempting to warm up.  It is a little contradictory considering it's in the 60s and I chose to sit outside to warm up, I get that, but it's relatively quiet out here and there is a family of hummingbirds that fly between our house and the neighbors and I am hoping to see them. Yesterday one went right up to your wind chime.  I am considering joining the ranks of the natives here and putting up some bird feeders and whatnot, but the bugs, eek.  Speaking of that, I have gotten less afraid of the small spiders and can deal with the moths, albeit their annoyance, but last night before bed a not so little spider decided to just galavant across the carpet upstairs, we both froze, I called for aba, and naturally, he had to go.  We have a very clear understanding that if they stay outside the house they can live a very fulfilling life, but if they enter into mine...well let's be honest, I am not going to assist them on their earthly mission. 

Today begins the official first day of me providing teletherapy for the school year.  I am excited but definitely nervous.  It's all-new teachers for me to get to know and half of my caseload is also different.  I suppose that isn't completely different from if we were in person, but virtual adds a different set of nerves for me.  I am sure in a few weeks things will settle down and the schedule won't feel as chaotic and things will come together.  Right now I just feel overwhelmed with it all.  Charlotte's mommy asked me yesterday about how it was going and I gave her the thumbs up drowning gif and said "similar to living life with CDKL5".

Yesterday we went to the park and there was an area that should've been for you.  I am going to need to write a separate post about it when time permits, but the whole experience was surreal.  Pretty much sums up life without you here in general I guess.  

Meena and Tzviki painted you some new rocks before we headed back up here, I didn't bring them to you before we left because I had brought you some others, so just know there are more coming your way.  

I am sorry this is short, I will be back. I hope you are continuing to be at peace, and know we love and miss you.

Love always,
Ema

The Mighty Contributor

Monday, August 3, 2020

6 months

Oh my little bear, 

This post seems just as difficult to write as it was to speak at your funeral, something I did with two of my best friends holding me on each side, 6 months ago tomorrow.  Today is hard.  Today marks half of a year without you being sassy, kicking your brother, or hanging out with your siblings.  Today marks 6 months that you haven't been in any pictures or cuddled by aba, myself, or nurse Paige.  Today marks 182 days since I last saw you. Today marks 26 weeks since I gave you your last kiss and placed you on a gurney that was loaded into the back of a car and couldn't even watch leave the driveway.  I wish I could say that today marks something other than another first in life without you here, but that is not the case.

The last 6 months have been filled with so much missing you I am not even sure you could fully comprehend it.  At the same time, it has been filled with so many moments of happiness that you are no longer suffering here.  I am close to 100% sure that you have been in a far better place over the last 182 days. Something I am reminded of when I see your CDKL5 siblings in hospitals, sick, or recovering from seizures.  I do not miss you having to endure any of that.  I do not feel at all sad that your past 26 weeks have been spent in complete peace.  It has been 26 weeks without sticking you with a needle, your first 6 months ever without one single seizure, and 182 days with not one ounce of pain.  However, I would be lying if I didn't tell you that I have spent close the entire last 6 months wishing that you were here as a healthy, not ever having a mutated CDKL5 gene, Sonzee.

Since today marks your first 6 months in Gan Eden, besides the standard glow rock to be placed by your grave, there will be a new tradition of placing a soapstone character every 6 months, and today's, of course, is a bear.  Today also marks what would have been your first day of Kindergarten, and in addition to a painted rock, Auntie A made you your back to school sign that says "First Day of Kindergarten in Gan Eden".  I hope you are wearing a cute outfit and someone does your hair as cute as nurse Paige would have.

These last 6 months have been filled with such bittersweetness that I know will continue for the rest of my life.  We have done so many things in your honor since you've been gone because that is all we are left with, but yet we wouldn't trade your peace for our comfort for even a second.  We won't ever be at peace with that fact that you aren't here with us in a broad sense, but there is no way we would ever have you come back, even for a day, to have to endure what you did.  My heart will continue to be shattered until we meet again, but I have faith that you have spent the last 4676 hours making up for your 4 years 11 months and 22 days, and for that, may you have an eternity more. 

Love always, 
Ema


The Mighty Contributor

Friday, July 31, 2020

Difficult roads...

Dear Sonzee, 

Another 31 days is wrapping up meaning another month is coming to an end.  This one, in particular, was our most eventful since you left us. We finally closed on the house 9 days ago, Bear Pines is slowly coming together.  The most incredible part is seeing my vision become reality.  Aba and I joked last night this is a place we would love to airbnb, and we hope all who visit here will feel the same way.  I added touches inspired by you all throughout.  Currently, I am upstairs on the outside porch writing this letter while sitting at a bistro set placed on top of a rug that is beige with a red design all over it, and drinking my coffee from the ceramic cup that has the red ring around the top.  They are honestly pretty crummy substitutes for you, but since they are the best I get, they are absolutely perfect.

This past week finished off multiple meetings for the new school year at FBC.  I am going back to West Valley for the 3rd year and took the two classrooms at East Valley.  The decision was made for me to not go back into central, and it was the correct one confirmed the second I looked at classroom assignments and didn't realize I was holding my breath until I saw Ms. Susan and Ms. Erin in the classrooms that were once mine.  I know I will miss seeing the faces of everyone who works on that campus, but I don't think I could walk the same halls you once did in your gait trainer, or have the constant reminder of your absence seeing the classroom you most probably would have been in.  I know the staff misses you greatly, they check in with me often and have made that very clear.  They always have been the best.

Yesterday we saw the initial mockup of your headstone, it turned out beautiful, but needs a couple of small fixes.  I am excited to see the final draft and then one day in the next few months it'll just show up.  I anticipate that day will be filled with mixed emotions.  Tomorrow begins a new month that will present us with some firsts. On Monday it is going to be a double whammy as it would have been your first day of school, Kindergarten no less, and it also marks 6 months since you have been gone.  Tuesday I am slated to do a live zoom as a Chabad FSU alumnus about your story, and I am really nervous about that.  

While today marks the final day of another month of 2020 you missed out on, it was also filled with new beginnings.  It breaks my heart that you aren't here to share them with us, but I know wherever you are, it is better for you.  So like this quote that now hangs in the coffee nook of Bear Pines says, 

Love always, 
Ema

The Mighty Contributor

Monday, July 27, 2020

25 Weeks

Dear Sonzee,

I simply cannot believe we are just one week away from you being gone for 6 full months.  It seems as if an entire lifetime has occurred during that time, one where you aren't physically present in but yet you somehow manage to fill all the space around me. 

During this last week, we finally closed and moved into Bear Pines.  We took a family picture on the front porch and we held your place with one of your Sonzee Bears.  It isn't the same, but at least there is a place holder.  The house is slowly coming together, but I feel like it will never be complete.  It took me two full days before we got the front porch set up perfectly with patio furniture, the new address sign, and your windchime.  I finally drank my first cup of coffee sitting outside on Saturday morning.  My heart misses you terribly, but when I am outside I just think of that quote from "A walk to remember"; "our love is like the wind, I can't see it, but I know it's there" and every time, I start to hear the rustling of the leaves in the tall trees and there is an extra gust of wind that surrounds me. 

This whole moving forward thing isn't getting any easier, but it is definitely getting different.  We celebrated Tzviki's birthday yesterday.  I made him a hockey cake and aba and I continued to build furniture and organize.  Your siblings spent the day both inside and outside.  Noam is roaming around like the king that he is, and getting bossier if you can even imagine that.  I want to do something special to honor your 6 months, and while talking to Auntie A today, she helped me figure it out, so now I just hope it gets delivered in time for me to bring it to you next week.

Today begins on-line meetings for the new school year at FBC.  My mind is still a mess about everything.  Right now it is scheduled to start virtually in a week, but if it changes to in-person in 3 weeks I cannot figure out if I would want to go in?  Your siblings' school has yet to determine their course of action either, and I am also torn on whether to send them.  Everyone likes to point out children dying from covid19 is rare, to which I reply that you were rare and statistically about .002%.  Someone has to be the statistic and you were one, so they really mean nothing to me.  I am really just hoping everything stays virtual, but that is selfish ema talking.

I hope you are continuing to play with your friends and make new ones and do whatever it is that you want.  Remember you are loved and missed greatly!  Stay healthy and be well.

Love always,
Ema

The Mighty Contributor

Wednesday, July 22, 2020

Control


The last few days I have felt similar to a prepubescent hormonal girl who feels like her world is falling apart and that no one understands her.  While she has no idea why she is feeling the way she is, I know for me, the culprit is grief, which is now the replacement for the previous 5 letter string of characters that wrecked so much havoc on our lives.  Unfortunately, and similar to CDKL5, knowing that my grief is "the why" doesn't at all help with gaining any sort of reprieve from it or any control over it. It is so hard.

I have read enough books about grief and talked to enough fellow grievers to know the best course of action is to just sit with the grief, but honestly, it isn't as easy as it sounds.  Sitting with grief means there has to be a relinquishing of what little control I have fooled myself into thinking I have left. It means allowing myself to feel these tumultuous waves of pain, of anger, of sadness, of I don't even know what.  It means I have to allow myself to realize all of my feelings are normal, even the ones that I am deeming irrational because they all do have a purpose and because they are my feelings, they are all valid. 

I feel like I have been reluctantly dragged to a get-together and now I have to make the best of it by striking up a conversation with someone in the room.  It is awkward, the desire to be there is null and there is the now added component of pretending to be interested in small talk.  The difference between grief and attending the get together is that more often than not, you can look back on attending the event and realize it wasn't so bad after all.  When it comes to grief, there is no looking back on it, there is no escape from it, and there is no excitement over allowing it into your life.  The only positive that comes from sitting with grief is that each time you sit with it, you have managed to successfully survive another tsunami, but that is hardly a consolation when you know the cycle is neverending. 

The Mighty Contributor

Monday, July 20, 2020

24 weeks

Dear Sonzee,

24 weeks. I don't get it.  Time has never appeared to pass by so quickly, even your time here on earth seems like it went by not as fast.  It is just the time with you actually here seems to be getting harder and harder to see.  I feel as if I am sitting on a plane and watching you shrink as the plane moves higher and higher...I fear that you will soon be completely out of my sight.  That thought is scary and suffocating and yet in some ways, it is unavoidable.

Last Wednesday night we went to a drive-in movie event put on by Hospice of the Valley, they played the Disney movie, Onward.  We already watched that accidentally near the beginning of quarantine when Disney did an early release.  I had heard people say it was amazing, so I just pressed play without even reading the synopsis.  It was a parenting fail in terms of Laeya, and I definitely was not prepared for it.  This round, it was aba who had not seen it, but he at least knew what it was about.  I think it was toughest for him due to Saba.  Overall, despite it not being one of my favorite Disney movies, I think it provided a good storyline for us.  Your sisters brought their Sonzee bears all dressed up in your newborn outfits along with your feeding bags and Laeya even threw in your phone (that we haven't turned on since it died). 

As a whole, I am still feeling lost.  I know it has become apparent to your siblings because Laeya mentioned how I don't spend all my time giving you meds, taking care of you, or working on something related to your care and I just sit at my desk "bored".  It is an accurate statement.  I have all this time, and I don't know what to really do with it.  I try filling the void with different things every day, but everything pales in comparison to just having you here.  Yet, as much as this is horribly painful, I wouldn't even ask you to come back so you could be the one having to suffer.

The one thing everyone seems in agreement with here is they are loving my "grief directed cooking".  I have been doing my best to make different "fancy" dinners, and since I do have the time now, I find easy recipes and just dive right in.  The majority of them have been huge hits, the ones that weren't I knew I was gambling on from the start, but I made them eat it anyway and just bribed them with some dessert.

This week is already the last week of the extended school year, I can't believe it was four weeks long.  FBC's school year is planning on virtually starting two weeks from today.  I feel like summer shouldn't be over yet, without being in NY it doesn't even seem like it ever began.  I hope wherever you are, you are having fun dancing around and doing everything to your heart's content. You are greatly missed and always loved.

Love always,
Ema

The Mighty Contributor

Friday, July 17, 2020

"Normal"

When Sonzee died covid19 was just beginning to infiltrate the United States.  Besides my mother mentioning in passing there was a bad virus in China, I honestly didn't give it a second thought.  By the time we celebrated her 30 days after she passed, restrictions were beginning to be put in place.  I never officially went back to work in the true sense of the word, because by the time I decided I might give it a try, schools closed and life went virtual (inner sigh of relief).  It was an adjustment on many levels being home with the kids and them being in school online, but ultimately, it allowed for a complete change of pace, so it removed a lot of the new I would have had to face post-Sonzee.

In April I couldn't even imagine that summer camps would not open and that we would not be returning to NY like we typically have.  I was a little skeptical about us going away for 3 months, but Sam and I always said after Sonzee died we would need a complete change, so I was looking forward to it nonetheless.  By early May it was clear that our trip to Israel was not going to be happening and by the 2nd week of June, we knew our summer was going to take place in Arizona.  As disappointing as that initially sounded, I felt another sigh of relief.  Life has essentially morphed its way into this entirely new adventure.  One filled with being with my children 24/7, working off a computer in Sonzee's bedroom, trying to keep the kids from fighting all day, and swimming in this vast ocean of grief.  While there is a part of me that wants my children's lives to return to normal, that would also mean my life would have to resemble some sort of normal as well. 

Normal would now involve a school pick-up and drop-off at only one school.  Normal would now mean that I return to work in a school where I will no longer also be a parent of a child who attends.  Normal would now mean that I will be driving around multiple times a day without Nurse Paige in the passenger seat.  Normal means no random hospitalizations or doctors' appointments occurring that cause scheduling conflicts or interfere with playdates.  Normal means life would actually be moving forward.  For my work, the tentative anticipatory date of normal is August 17, which is a month from today.  There is something so terrifying, painful, and sad about a countdown that would officially represent the beginning of life without Sonzee, and from where I am sitting, I am just not ready.

The Mighty Contributor

Wednesday, July 15, 2020

What I wish I knew before I became THE grieving mom

Within the first few weeks after Sonzee passed away I wanted to apologize to all the bereaved moms that were checking in on me for me not being there in the same manner after their child had passed.  My only comparison is joining a sorority and after you receive your bid and you are swarmed by this large mass of people who are there to guide you, support you, and love you in a way you can't even understand at that moment.  There is something about joining this type of club that causes others and your relationship with others who aren't grieving their child to change.  In my experience it is no fault to anyone specifically, it is mainly due to the overall awkwardness of the situation, the insecurities and potential fear of saying the wrong thing, not wanting to say anything that might be a trigger, and simply just being unsure of what to say at all.  I, myself, 100% guilty of being that person and so last night after I received a text, I decided to create a list of some of the things I wish I knew before I became THE grieving mom. 

**I will add that grief is extremely personal and a never-ending journey, therefore what "I wish I knew before" might not be what all others who are grieving feel.  Please use this as a reference, but understand that grief is not black and white.**

1. Don't be so afraid of saying something wrong, that you say nothing.  You may fumble your words or stumble with your thoughts.  You may have written the text 5 times already, erasing it every time because it just doesn't feel right.  You have absolutely no idea what will happen after the words leave your mouth so you decide to just keep your thoughts to yourself.  Nothing you think you might say will make a difference anyway, so the days pass and you say nothing.  Time goes on and now you feel like it's too late to reach out, so you continue to say nothing.  Please reach out.  Send an emoji if you can't find the right words.  Don't be afraid.  You may not receive a response immediately, please don't take it personally.  The fact that you took the step to show you care means more than you'll ever know.

2. Don't be afraid of saying something that will be a triggerLife after the loss of a child IS one big gigantic trigger.  Whether you say something about a specific topic or not, I assure you our child is always on our mind, 100% of the time.  Your words aren't a reminder, because our minds are on a looped reel regardless.  By bringing up a potential trigger you are allowing us to share our experiences of our child and by letting us know that you are thinking of him/her we know he/she hasn't been forgotten. 

3. Don't be afraid to ask me to relive an experience.  You know there are some situations that you need first-hand experience knowledge, and you want to reach out to the bereaved mom, but you worry about bringing it up out of fear that she doesn't want to discuss it.  Sometimes that might be the case.  Give her the right of first refusal.  For me, the life of a special needs parent has always been about sharing our experiences.  I like many other special needs parents, are well versed in many areas of medical complexities and just because our child is gone doesn't mean we have lost all of those years of knowledge and experiences.  Sometimes we just need an excuse to talk about our child.  Sometimes, even if it brings back negative memories we still would rather relive it than fear declining and never being asked to share again.

4. Keep reaching out.  Friendships are of course reciprocal, but after losing a child a lot of us are barely hanging on.  There are days filled with tears, anger, and various other uncontrollable emotions.  Sometimes we want to talk until you regret reaching out in the first place, but other times your efforts might feel unnoticed or ignored, but I assure you they are noted and appreciated so don't stop in your efforts.

5. Grief is messy and ugly.  There is nothing organized about grief.  There is no way to put a positive spin on burying your child.  Your role is never to be able to rid us of the pain, the emotions, the challenges, or the complete chaos we have found ourselves in.  You cannot change the situation, you cannot make it alright.  When we are sad, cry along with us and when we laugh, know for that moment we are genuinely happy.  When we are angry, allow us to feel that anger deeply.  Never share platitudes that negate what we are experiencing.  Grief is individual.  Grief is hard.  Grief is at times extremely lonely and suffocating.  Grief is simply our new way of continuing on our parenting journey.  Your role is simply to love us and support us along the way and trust me, we need you.

The Mighty Contributor

Monday, July 13, 2020

23 weeks

Dear Sonzee Bear,

My groundhog week begins again.  It will be 23 weeks this afternoon at 1:08pm AZ time.  This week has been filled with much of the same with a slight twist of additional tears.  The further away our last time together becomes, the harder it is for me to try and understand everything related to your life and your death.  In just 5 days it will be 6 months from the day aba called hospice and had you admitted.  I have spent much of these last 6 months analyzing the 6 months prior to that day, which brings us to a year ago now in New York.  Last summer is when my gut knew you were starting to slip away from us.  It was such a battle for me to try and convince everyone else to really look and listen to you.  Ultimately, the only two differences would have been you knowing the hospice team a few months longer, and maybe fewer fights between aba and I?

Speaking of aba, he woke me up one night this past week to tell me he saw you.  You held his hand and walked with him to where your friends were.  You then left him to go and play with them.  He said it felt so real he couldn't even understand it.  He couldn't stop saying how happy you were.  My heart was filled with such joy.  I knew the minute he said you let go of his hand and walked away to your friends that I am still not ready for you to visit me.  I love that you are aware of that but still chose to let us know you are truly ok and so radiantly happy.  It's all we have ever wanted for you.

This weekend we had record-setting temperatures.  It is absolutely ridiculous here.  We didn't need this type of reminder to know why we choose to flee this city every summer.  It is horrible.  I literally drive to check on your rocks and hop back in the car because it is way too hot to stay longer than 5 minutes in the sun.  Sometimes you throw us a heated breeze, Laeya and I always make a comment when it happens, it makes us smile, and we always look up at the sky and thank you. 

Your siblings and aba have been splashing like maniacs in your spa.   Aba says it is his happy place. They are treating it like a pool, temp, toys, jumping, and all.  It is really insane to be out there because I get soaked sitting nearby.  I have been able to walk up the steps and be out there while they are inside for a bit without crying, so that's a plus.  I have taken to watching way too many "tasty" food videos and spend their pool time making various dinners.  I have also perfected my at-home coffee beverages and smoothies.  Nurse Paige wouldn't even know who I am anymore because I have only been to a Starbucks twice since March and it was only when we drove out of town.  Winning!

As always I will finish off by telling you how much you are missed and loved.  Laeya says she is having a bit of an issue figuring out the dynamic of siblings without you here, I am in that boat for every dynamic.  I will continue to hope and wish you are having a great time.  No matter how incredibly hard it is for me to be here without you, I am pretty content with aba's account that my wishes and hopes are coming true so may they only continue, and may you only find further happiness for yourself. 

Love always,
Ema


The Mighty Contributor

Friday, July 10, 2020

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."


The Mighty Contributor

Monday, July 6, 2020

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 


The Mighty Contributor

Friday, July 3, 2020

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

The Mighty Contributor

Wednesday, July 1, 2020

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.


The Mighty Contributor

Monday, June 29, 2020

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

The Mighty Contributor

Thursday, June 25, 2020

Confusion

Sam and I have been attending a virtual grief support group for bereaved parents on Monday's every 2 weeks.  I personally find it therapeutic and a safer place to say the thoughts aloud that I might sensor around others who (thankfully) haven't lost a child.  There are just some things you cannot relate to or comprehend unless you have joined this group.  At the end of the group this week we were all asked to use one word to describe where felt we were in the process.  I have a difficult enough time trying to identify with one word as a description on a good day, and of course the minute the question was asked every single word left my internal dictionary.  I started by saying that it really varies depending on the hour, but overall, the word I chose was confusion.  I don't really feel that word does my emotions justice, but I cannot find a better word to explain the myriad of thoughts that consume me.

We spent her life on auto-pilot essentially, trying to find everything and anything to ease her symptoms and make her quality of life even just an ounce better.  We didn't dwell on the situation, in fact, I feel like at times we even embraced it.  My internal motto her entire life was that I didn't have to spend the time worrying about her death or what would happen after because one day it would happen and after that point, I would have all the time in the world to look back and relive it all.  It was one hell of a ride, so many emotions and feelings along the way placed on this virtual back burner.  Now here we are, a week shy of the 5 months marking of her death and that motto couldn't be unfolding more accurately.  We hustled, we made it all work, we balanced it all like it was a profession and then it just stopped.  Our 4 years 11 months and 22 days of making lemonade out of lemons was obliterated in an instant and now there is a calmness in our house that makes absolutely no sense.

I can't figure out how to even make sense of the situation much less any of my thoughts.  Is there even a way to do that?  Life for the rest of us continues to go on, but a hugely significant piece has permanently disappeared.  There are no more fights, emails, or lengthy phone calls between insurance companies, doctors' offices, and pharmacies over medications and procedures that "aren't medically necessary".  There are no more meetings, evaluations, service plans, or any amount of time needing to spend on those items.  No more hours are being spent organizing supplies, ensuring the appropriate supplies are en route or approved.  There are no more appointments, random hospitalizations, or even scheduled ones.  No nurses are opening my garage and letting themselves into the house or sitting next to me in the car listening to all my thoughts and becoming part of our family.  There are no daily medication times, no alarms signaling reminders, no extra precautions that are needing to be taken to go anywhere or do anything.  We aren't limited to when or where we can go anywhere having to consider its location to a large children's hospital.  There are no more sleepless nights due to the fears of seizures or pain disturbing her night. It all stopped, in an instant, and now there is just this deafening silence that is filled with constant replays of a life we no longer live leaving all the emotions once ignored to finally be addressed...and so there is...confusion.




The Mighty Contributor