86 weeks

Dear Sonzee, 

Today at 1:08pm, 86 weeks will have passed since we last were together.  How has it been that many Mondays since you were here.  Why does part of life seem so normal, and the other part seems like I am living on an alternate universe?!  Sometimes saying the weeks make it seem so far away, and then this weekend I told someone almost 20 months and they responded with a huge sigh and said, "that just happened, it is so fresh".  I never know what the time frame will mean to another person, it is more interesting to me than anything else.  But also, in the split second it takes for a reaction to occur I find myself holding my breath afraid of what they might say.  In this case I felt a quick sense of relief and then in my mind realized how recent it really was despite how long it feels.

This weekend someone asked how many kids we have.  I paused and decided to phrase my answer in a way that I had secretly hoped would be overlooked, but that kind of backfired.  I said, "I have 4 here". In my mind it was an honest answer, and I assumed the "here" part would be unnoticed.  Instead, it was followed up with, "here? are there children somewhere else?".  Which resulted in laughter from everyone around including myself and aba, but then I felt so badly when I had to interrupt the happy mood with, "well, umm, actually, we have 4 children here, we had 5 children, we had another daughter, but she died".  I really dislike how the mood shifts from cheery and festive to morbid in a matter of seconds.  We spoke about you for a bit, which is always nice, we told them how Bear Pines is completely in your honor and inspired by you.  Then someone asked what was on aba's socks and we said, "oh, so the daughter that died, it's her", and then aba explained how he wears you every weekend because it is how he keeps you around with us.  

Tonight, is Corr's celebration of life.  We sadly will not be able to go because of the beginning of last days of Sukkot, but hopefully you are able to stop by.  I hope you girls found each other and are having a blast living your new lives together.  Miss Brittany and I miss you both ridiculously! 

Your siblings finished one week of their 2 weeklong fall break.  It has been a bit insane, except I really cannot comment so much because I have been working and will be besides the days I have taken off for the holiday's until they go back to school.  Then it will be my fall break and they will be back in school.  We finished our first full week in the new Airbnb, minus this weekend because we went to Bear Pines.  Tzvi’s hockey games start soon, and we sadly will not be able to go away for the weekends as much as I would like, but we do have a trip planned to Chicago for one of his tournaments and I am pretty excited about that.

Anyway, my love.  We miss you beyond words and hope you are safe and doing well.  

Until next time.

Love always, 

Ema

Weather pattern

I was recently asked if I could describe my grief as a weather pattern what would it be.  The idea gave me pause and a good inner chuckle.  I considered my answer while a myriad of thoughts was flooding my mind. 

 Maybe a tsunami?  Does that count as a weather pattern?  I don't think so. Maybe those times that low- and high-pressure systems come together? A thunderstorm with atrocious thunder and lightning, but then all of a sudden it is over?  A sun shower on an otherwise beautiful day? A lightning storm? An Arizona Monsoon, where it comes in quickly and leaves just as fast?  How do I answer this question? 

 I began to speak but as I always feel when it comes to trying to put my grief into words, I stumbled over my words.  I feel like I am in a state of confusion. I feel like my weather pattern is all over the place, but the trickiest part is that I am not even aware of what it may be or could be until it is actually happening.  I feel lost in a horrible storm and wish someone would join me in it, but I want to be in the storm by myself, so I don't really want anyone around.  I want to ignore the way the rain comes out of nowhere and how loud the thunder is and how scary the lightning is. I wish I could have a personal meteorologist, someone to give me some warning over what potentially could be on the horizon and how long it may last.  Maybe then I could give warnings to others so they would know the right thing to do.  

 The truth is unless you truly live with the grief of losing a child it is hard to conceptualize the complexity of the inner turmoil.  The panic of the world forgetting your child, the guilt over not wanting to think about your child, the fear over someone overstepping but the sadness of them not taking any steps at all or not enough.  For me personally, the weather pattern is not quite known, but one thing is for certain, it is always, always, unpredictable. 

85 weeks

Dear Sonzee, 

Today marks 85 weeks.  I feel like it is one of those numbers that should earn me a medal of some sort.  How this many weeks has gone by is so baffling. My brain cannot even compute what you might have been up to all of this time.  What I would give to not have to imagine but to be able to truly know.  I am slowly clawing my way out of the deeper folds of grief I have come to find myself in.  It is a slow process and I had my turn of experiencing that these cycles of grief are sporadic, disorderly, unpredictable, and yet extremely repetative.  It all sucks.

This week I was asked on two different occasions how many children I have.  The first time I responded that it dependended on  what context the question was being asked, it was clarified to mean "live births", so that allowed my answer to include you.  The second time I did my typical stutter, and then said well, I had 5, I now physically have 4, but I had a daughter who died.  The person then clarified and said, "so you have 5". Then we spent 30 minutes talking about you but how life has changed since you left us.  The person mentioned how incredible I was for being able to talk about you.  Truth is she just caught me in a "good moment".  I do have those times where I can talk about you and not even flinch.  Those moments confuse me, but I am grateful for them.

On Thursday we had Yom Kippur.  The Yarhtzeit candle holder and red memorial lights I had purchased for you are packed away in storage so I ended up buying a 50 hour candle that had a quote on the jar about missing you and it smelled really pretty.  I bought two, with two different fragrances. They might be my new go to.  I didn't go to shul for Yizkor, I am happy I completed the fast, but I did feel really guilty I didn't get to go.  I know I have another chance over Sukkot.

We moved to a new rental.  We have this one currently for 6 weeks, but we are hoping to be able to extend it so we don't have to keep moving.  We learned it will be 6 months before the house is ready.  That gives us time to really figure out what your message is to us.  But, really we cannot keep moving.  Your siblings have been amazing, but it breaks my heart when I think about the chaos and heartache they have experienced for the last close to 2 years.  They need some stability and for things in their lives to just level out.  They have all at different times asked why bad things keep happening.  I try to reframe it to be that they aren't exactly all bad things, but if I am fair, in their eyes, nothing has been overly positive.  They are honestly doing incredible, but I can see where they each are cracking a bit and I am trying to help keep them together.

I still have not been to your grave.  I am sorry.  Someone told me I will get through this part and be back to it soon, it is just part of the process.  I am waiting for it.  I know I am slowly getting there because I have thoughts in my mind where I consider going vs not even entertaining the idea.  I just wish this would get easier...but I know that won't ever be the case.  Maybe if I knew you were able to be the you that you weren't able to be here with us, then it would be enough? 

Anyway baby girl. Please stay safe and healthy.  Please visit us. Keep sending your signs.  You are missed and loved!!

Until next time.

Love always, 

Ema

84 weeks

Dear Sonzee, 

The clock keeps ticking, the days keep passing, I find myself 1/2 way through September and 84 weeks away from life with you.  I still don't really understand how life continues, and despite how complicated a simple 3-word phrase really is, it just does. This "life after Sonzee" is unreal at times, confusing, and really hard for my brain to process at times.  

We spent our 2nd Rosh Hashana without you.  I wrangled your siblings together for a picture, but I hardly even wanted to do that, I just knew I should.  This Hebrew year we will be celebrating Laeya's Bat-Mitzvah.  I cannot believe she will be 12.  I cannot believe you would be turning 7 just a few weeks later.  Instead 5 days after we celebrate her milestone, we will be honoring the second anniversary on the Hebrew calendar of your death.  

Noam woke up sick Saturday morning.  My immediate thought was one of panic, and then within 3 seconds I realized, rather, I reminded myself you aren't here so I have no reason to worry.  He will be over it quickly and even if your siblings caught it, it's essentially nothing.  He was over it within 24 hours, and I have no you to worry about, so life will just continue and it will take me longer to get over the panic it momentarily brought into my mind.  The ease of these parts of life breaks my heart, the PTSD from life with you is permanent, and so it will be days before my fight or flight response settles and the anxiety of the mini panic subsides.  The grief of not having you just adds another level of heaviness to it all.

We booked tickets for Tzvi's hockey tournament coming up in Chicago.  Another reminder of how our life is so very different.  There was no call to Ryan House, no checking with nurse Paige's schedule, no feelings of potential guilt over us debating if we would take you with us.  It was as simple as picking a flight and me requesting the days off from work.  The guilt of life without you is extremely heavy.  It counteracts all the smiles.  

We received the lists from the company dealing with the house and water damage.  They labeled items "total loss" and had pictures.  I found myself crying in a parking lot over your clothing wardrobe.  I don't understand why that had to be damaged.  We had recently moved it out of the playroom and into Laeya's room so she could have a piece of you.  It's gone.  It was listed under "total loss", but we asked them to save it and I am not understanding why it wasn't.  Box 121 included items from Noam's closet, including your last package of diapers.  It was listed as "total loss".  It shouldn't have been.  They never were wet.  They were high on a shelf.  They have no monetary value, I want the package of diapers back.  Your bedroom doors were taken down, I have never erased them.  They have all of your last medication times and amounts written with nurse Paige's, Auntie A's, and my handwriting.  Your last doctor appointments are still there.  The doors were in the pile of "total loss".  Part of me wants them to be taken away like your bed, without me being aware, without me knowing.  The other part wants to cling onto them for dear life because it's all I have left of life with you.  

I feel like all of this entails some messages from you.  I am trying to figure out what specifically they are.  I am gathering it has to do with forcing myself to deal with your absence.  I also think it is you trying to tell us we have to move forward.  Both of those things I do understand are necessary, at least logic-brain says so, but grief brain, not so much.

Anyway, little girl.  I miss you beyond words.  I hope you are doing well. I hope you know how loved and missed you are.

Stay safe. Be healthy. 

Until next time.

Love always, 

Ema

83 weeks and 2 days

Dear Sonzee, 

I really do not understand how these weeks continue to fly by.  Between work and activities with your siblings, I can hardly remember much of the specifics.  Tzvi had his first scrimmage last Tuesday and then had his pre-season seeding tournament.  I wore my new purple glitter boots and my new Hockey mom sweatshirt.  His team had 2 wins and 2 losses over the weekend which isn't a bad way to go into the season. I am going to need to ask you to please spread your juju to him and help him with his shots.  He just needs a confidence boost and then he will be good to go.

Meena went back to gymnastics last week and after a day got moved up a level.  She is slated to compete in a year, which gives me ample time to try and figure out how to balance competitive hockey and gymnastics along with whatever Noam and Laeya are doing.  I swear I need to clone myself.

Work is a bit of a juggle lately since I changed my status from part-time to full-time. I was finally getting into a rhythm and then the holidays appeared, so now I just feel a bit overwhelmed trying to make sure I stay on top of everything and get everything done on time.  October will be a breath of fresh air when it finally arrives. 

Last Friday pop-pop gave us a bit of a scare but thankfully has recovered.  We spent another Shabbat spread all over Phoenix and it is feeling a bit insane not being together and having to always find a place for us all.  Everyone is being so amazing with housing your siblings as well as us, but it would be nice if could find a more semi-permanent solution instead of being nomads.  I will save my update on the house and Rosh Hashana for next week since this theoretically shouldn't include anything since Monday.

Anyway, little girl.  We miss you.  We love you. 

Stay safe. Be healthy. Have fun.

Until next time.

Love always, 

Ema

1 year 7 months

Dear Sonzee, 

Another month has come and gone.  This one, not one of the easier ones for sure.  I am sorry I haven't been able to visit your grave.  I will go today though to bring your new rock.  I have so many I need to make for all of the upcoming holidays, and obviously, one to represent the flood of the house.  The house alone has really tipped my scale of coping with you being gone.  Aba warned me about going into the house the other day, I wasn't planning on going, I didn't end up going.  I really do not think I will be able to ever walk by your room again.  I keep saying that I know you are not there and that all your stuff is with us, but it is just so hard.  Even if they replace the walls, it won't ever be the same.  We won't ever have your bed in there, we won't ever have that uncomfortable red chair in there, and you won't ever be there.

You haven't been there now for 19 entire months.  I realized this month that had we never had Noam, Meena would have lost her title of big sister.  Obviously, she would have always been your big sister, but she wouldn't be an "active" big sister,  She would have become the youngest, the entire order of the house would have shifted.  Another concept I am going to have to prepare for because time continues to fly by at record speed and before I know it, I will be staring at my screen and writing to you on the day that Noam turns 4 and then a year later when he outnumbers your days here with us.  In just 2 months and 25 days, he will also be 4.  I really do not know how I will be able to process that since you will forever remain 4 years old to me.  The thought of your younger brother turning your age and then aging you makes this even worse.  It is just another horror of life after burying you.

Noam asked (again) where you were.  I reminded him you were buried in the ground.  He gave me a chuckle as we drove to school and he said, "Ema, you are driving over Sonzee".  I reminded him that you were safe in a grave next to the street and in a place, no one could drive over.  His journey with your absence is fascinating to me because of his age and comprehension of the concept of your absence.  I know he misses you a lot.

This month brought me more tears than I think I have cried over the last 19 months.  I feel like this month brought me back to square one of my grief and if it is even possible into a darker part that I never experienced.  It has definitely been the most challenging.  That is the worst part of grief.  Thinking it can't get worse and realizing how false that statement is.  Similar to life with CDKL5. It can get worse, it does get worse, and it will get worse.  I am still waiting for it to all become more manageable. I suppose I will even continue to hope that it is still possible.  Until then I will just be thankful you left me in the hands of some amazing supports.  

Anyway baby girl.  19 months of missing your sassy smirks and beautiful blue eyes.  19 months of missing your snuggles and your curly hair.  19 months of missing seeing you in your Rifton chair by the big window as I drove away or came home.  19 months of missing your nurses and all of your equipment in the house.  19 months of not accessing your port or hooking you up to your TPN/Lipids.  19 months of no feeding tube changes, doctor appointments, and dropping you off at school.  19 months of incomplete family photos and missing your presence in our home.  19 months and counting of missing you forever.

We love you Sonzee bear!

Stay well, stay healthy, and stay safe.

Be free.

Until

next time.

Love always,

Ema