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, 

The Mighty Contributor

Friday, August 28, 2020


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, 

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, 

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,

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 23 days, and for that, may you have an eternity more. 

Love always, 

The Mighty Contributor