89 weeks

Dear Sonzee,

Today will mark 89 complete weeks without you here. This time 89 weeks ago you were being held in my arms…in a few more hours it would be the last time I got to feel your weight, hold you, kiss you, and tell you in person “I love you.” I wonder if you even heard me?

This last week went by so quickly and as I sit here trying to recall everything that happened I always wish I had started to write this during the week so I wouldn’t forget what I wanted to tell you.  

The big highlights of this passed week were really that Tzvi had his first league game.  It was the 2nd time I’ve sat in that rink on the north side for a game since you weren’t with me.  Since you didn’t require us asking for the key to use the wheelchair elevator so you could sit in the stands.  It was the first time that nurse Paige sat and watched a game without keeping an eye on you.  It was amazing for her to be there with us, embracing the tram spirit with her purple and black, getting to see your brothers first official goal of the season, but it wasn’t the same without you.  You weren’t kicking off your boots, she wasn’t swiping your VNS magnet, she wasn’t trying to adjust a soft purple blanket fighting with you to not kick it off.  She just sat next to me and we talked like our only focus was on the hockey game. 

It brings me so much comfort that she’s still in our lives, but I know it’s not just me who misses all those things I just listed.

On a similar note to your absence, after you died I made it my mission to make dinner for Corrinne’s  family every time she was admitted to PCH.  It was just all I could do to sort of remain in the old world and knowing how nice it is to eat a home cooked meal and not pay $182736 for Starbucks coffee became my mission to ensure if I knew, her family got coffee and dinner.  Then, she went to be wherever you are and life without you girls changed us all drastically and even random coffee drops couldn’t occur because there was no way to know who would be home, so dinner making essentially stopped. Until last night, when your CDKL5 sister Charlotte was back in the hospital.  I had tried to make dinner the first time, but it didn’t happen. Yesterday I just told her mom it would be coming, and I made dinner, coffees, and might have even thrown in a couple of beverages that the hospital doesn’t sell.  That hospital life sucks! The least I can do is bring food and coffee knowing what I know about that life and the suckiness it brings. 

My heart misses you terribly and while I would never wish to enter those rooms on the 8th floor ever again, sometimes my heart wishes you were here to have that option. My barista level of coffee making is 100% attributed to you!  

Anyway baby girl!  I love and miss you! I hope you are staying safe and having a blast with all of your friends! Thanks for showing your brother some love yesterday and helping him with his first goal.  Thanks for bringing Nurse Paige and so many others into my life.  

Until next time.

Love always,

Ema

88 weeks

Dear Sonzee, 

Another week has come and gone, marking 88 weeks since you left.  This last week was my fall break and despite being off of work for a week I still feel like I didn't get all I wanted to be accomplished.  I did finally manage to get over to auntie a's new place and organize Mo and Ziva's playroom, bedroom, and kitchen.  I still need to tackle her closet, but you know how Auntie A is, she has to be coaxed into allowing me to do my thing...eventually she always comes around.

Corrinne's mommy and I finally got our nails done.  It has been since summer since we have gone so that was nice we were able to catch up and to do some self-care.  I am trying to be better in general in that department.

Bear Pines has been doing really well. We have been pleasantly surprised at how full we have been.  We initially thought with it being off-season we would hardly have guests, but it is quite the opposite.  Someone wrote on the comment card they were sorry for your death.  It makes me smile that people actually read the wind chime that has your birth and death dates and or the information we put in the binder about you.

Yesterday was the first relaxed Sunday we have had in a while. It was nice to not have anywhere to really be besides Tzvi going to hockey.  Starting next week begins the craziness of games.  I can't wait to go and watch him, but also, nurse Paige is going to come and watch since we will be in her neck of the woods.  I cannot wait to start seeing her on a more consistent basis, or at least whenever she will be able to join us.  I have gotten used to her not coming in the house at 7am and not being there when I get home.  It helps we aren't at our house.

We had grief group Thursday night and the last photographer to take pictures of us as a complete family was taking pictures for hospice of the valley.  I mentioned how he took our pictures and we chatted about it for a bit.  I haven't fully looked at those images, but I have taken a quick peek now and then.  I wish we had dressed up, although at the time I wanted it to be real.  

Anyway baby girl.  

I miss you! Hope you are doing well!

Until next time.

Love always, 

Ema

87 weeks

Dear Sonzee, 

 Today closed out 87 weeks of your absence. This last week we finished the last days of Sukkot and your siblings finished their fall break. Ema's started today (wahoo!), but more on that next week. We spent our first full holiday at a different shul in a different community. To say we have been having a wonderful time here would be an understatement.  It brings me such joy to have your siblings' friends walk over to either play at the house or pick up the one they came for. To add to that, ema is also thoroughly enjoying being within walking distance of her closest friends. It has been most challenging for aba, but he is not the biggest fan of any type of change.

 We celebrated our first Simchas Torah without you. That was a bit tough, at least for aba and me. Some of your siblings reflected on your absence. I remember when aba was afraid to take you to the party the first time. He said you would not like it. I asked him how he could know if he did not try, and he humored me and took you with your siblings. The main difference between anyone humoring me when it came to you, was that it always resulted in my being right. (I will give myself that shameless brag). It makes me smile ear to ear to think about you in your wheelchair with your father pushing you around during hakafot dancing with everyone. There was even a year a friend of Meena's broke your wheelchair sitting on it with you. Small price to pay for us to make sure you were not slighted any experiences. You LOVED this holiday. You LOVED to be out there with everyone. You LOVED the attention. Last year, because of corona aba and I were relieved to not have to experience our first Simchas Torah without you because it did not happen in the same way it had while you were alive. This year...for me, I was able to avoid the first night because only aba went back to our usual stomping grounds. It was not easy for him. For me, the change made the blow softer. I teared up myself on the second night watching when aba put Meena and Noam on his shoulders, and when I watched him walk around empty-handed, no wheelchair within his grip.

 Being in this new environment has led us to new experiences.  I am sure that was your intention in whatever hand you played in flooding out the only home you ever knew. It is an amazing opportunity for us to give your siblings, for them to be near their school friends, and within walking distance of their school. It is a step in moving forward for sure, but there are times when I feel like I am a heavy weight stuck mid-step. Like when people who do not know us because even though we have lived in Phoenix for 13 years, we have not lived here, where we are, for 13 years, and I have to answer basic "how many children do you have?" questions.  There are conversations that occur in passing about our 13 years here in Phoenix, I will admit with an apology, I sometimes leave you out of the story. There have been times where I have met some amazing new to me people and I talk about you non-stop and let them know about "Sonya's Story" and how my blogging began because of you. I am still finding my way through this mirky grief water that is for certain, and another week under my belt has not changed that.

 Anyway, baby girl. I miss you, love you, and hope you are having fun, playing hard, and staying safe.

 Until next time.

 Love always, 

Ema

1 year 8 months

Dear Sonzee,

Today, in 18 minutes it will have been one year and 8 months, an entire 20 months without you.  How ironic that 18 represents life and I am writing this letter to you, and as each minute passes by your life only gets further from me.  Today, for the first time in exactly 2 months I am sitting at your grave.  I am sorry it took this long for me to be able to muster the ability to get in the car and drive to “see you”, to see your stone, to be able to see your name clearly etched staring back at me while I sit on your “hooray for Sonzee” bench. 

I painted you some rocks today baby girl.  I also got to see some new ones I haven’t seen from others who visit you.  My heart hurts looking at the rocks that have begun to fade and the ones with wording scratched off. There’s a part of me that wants to fix them, and there’s a part of me that says I shouldn’t. They represent the time that continues to pass, the weather that presents itself, the life that is continuing to go on without you here.  But it really breaks my heart. 

Thank you for the wind.  It made me smile through the tears I allowed myself to shed in front of you, the ones that I have tried to not have, the ones that make this all so real. 

This month has had its fair share of ups and downs when it comes to my grief.  I still haven’t figured out how to live with it as much as I thought I might at this point.  I still sometimes pause and remind myself you really did exist.  There are times when I am asked how many kids I have and with an unnoticeable twitch I say 5 and then if they ask if they are all at the same school I say yes.  It isn’t a lie, it just doesn’t hold the entire truth. 

This month I realized even more so that people just don’t understand that because you aren’t here physically doesn’t mean your siblings don’t need support anymore.  There are organizations that popped in during your life and then left us high and dry after you left.  It’s a shame that’s how they work.  Maybe it is an oversight, maybe they don’t really understand that during your life your siblings didn’t need the extra attention as much as they definitely need it now? Maybe they feel because you were the reason they were introduced to our family and you aren’t here that they don’t need to continue with us.  Whatever the reason, they should understand that grieving siblings shouldn’t be an afterthought.  It makes me angry, but it’s not worth my energy and we also do not need their assistance…but dropping us is wrong and just weighs on my grief.  After all, at one point you made our family “high priority” so it’s a slap that you are gone and that makes us not even a thought.

I don’t know what to say that in 4 months it will mark 2 years without you.  It’s hard to write, it’s hard to read, it’s hard to understand.  

Anyway baby girl.  Another month without you means that it is another month that you are perfectly whole and amazing. It’s another month you weren’t confined to your locked body.  It’s another month that you were able to truly be free and be YOU.  Another month means that you are able to do everything you couldn’t here.  Those are the thoughts that bring me a sliver of peace. They are what help ease the heartache.  They aren’t a complete fix, but they provide a cushion for the blows.

Please stay safe and healthy. Please continue with your signs and when you feel it’s right, please come and see me!

I love you baby girl!

Until next time.

Love always, 

Ema 

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