69 weeks

Dear Sonzee, 

Today is the last day of May and it also happens to mark the 69th Monday you have been away from us.  This last week was the first official week of summer break for me.  I find myself forgetting what it is that I did the first 3 days, but it was an attempt to get some things done around the house, copious amounts of laundry, and chauffeuring. I find it hard to believe we leave for the summer in less than 3 weeks and there is still so much for me to do. 

On Thursday, aba and I snuck away by ourselves with Mr. Dustin and Mrs. Penny.  I don't think it will ever make sense why it took you and Harper's lives and deaths for us to be part of one another lives, but here we are.  It is such a unique bond we have, and honestly, we had one of our best times away together.  I don't think I have laughed so much since you died, and there was no guilt around them.  In our true Mrs. Penny and ema fashion, we had a lot of dark humor and it was nice to be able to truly feel like myself around her and Mr. Dustin.

Your siblings were able to stay at home and not be sent out to various friends because savta came to watch them with cousin Jessica and her friend.  Everyone had a great time, and Meena even mastered her back handspring (although she has yet to do it for me in person since we came home, but I have a video of proof). Jessica left yesterday and Savta will be leaving tomorrow.  

Not quite sure how time continues to move on by but every week I find it more challenging to process your absence and the distance that seems to build from the last time you were in my arms.  I eagerly await a visit from you in my dreams. I hope you are doing well, having a great time, and staying safe wherever you are.

I miss you so much!

Until next time!

Love always, 

Ema

68 weeks

Dear Sonzee, 

We have almost finished with another Monday again.  Not quite sure how the days continue to fly by.  I also do not understand how I have so much to do and still no time to manage to get it all done.  This last week has been filled with more after-school activities than I can even process.  Between Meena and her gymnastics and Tzvi and his hockey, I. am. spent.  That is not even including the regularly scheduled ninja for Laeya and Noam and all of their swim classes.  On top of it all, I am trying to do the makeup sessions, which is just so much.  

Thursday was the last day of FBC for the summer.  I managed to survive two preschool graduations (not without tears).  The first one drove me into my office to have a good cry alone and the second one I was able to hide behind the camera I was holding for the online kiddos.  (That was Miss Tara's idea thinking if I was distracted with a job it might help, and it did until my mind had a moment to think, and bam).  Thankfully I have mastered my ability to swallow the tears just as quickly as they occur so few if any people actually noticed.  I did myself a favor and skipped the 3rd one that would have been on your campus.  I never attended preschool graduation there before, this year was not going to be my first. 

Your brother had hockey tryouts for the 2021-2022 season that will begin in August.  What an emotional experience it always is, but this year felt more intense. He earned himself a spot on one of the best 10U teams in the valley. We are so proud, and the boots this year will be purple sequin (if I can find them).  You would have rocked them.  Also, this is the team with the purple blankets!  You would have looked adorable covered in that as well.  My only concern for myself is that his home ice is the place with the wheelchair elevator lift you and your sisters used to ride.  It was the one we used to have to wait for the key to open it up.  I have been there since and found myself staring in that direction in a daydream.  I find myself torn thinking of how maybe one day it won't bother me while simultaneously scared for that day to come.

Meena turned 8 yesterday!  We went to a place that had trampolines, scooters, and all these parkour types of activities.  Meena had her friends, Tzvi and Laeya were with Momo, and Ziva and Noam were both trying to find their place, and I said how they needed a (mobile) Sonzee to bridge the gap.  The three of you would have probably been quite the trio.  Although, honestly I do wonder if maybe you and Mo would have actually been closer than Mo and Meena and if the dynamic would have somehow been altered in general.  We won't ever know, but I do wonder.  

Anyway my love, sorry this letter is being sent so late in the day.

I love and miss you and hope you are doing well, having fun, and staying healthy!

Until next time.

Love always, 

Ema

67 weeks

Dear Sonzee, 

It is mind-boggling it has been 67 weeks (and one day).  I am sorry I am a day late, it was Shavuot and time got away from me Sunday so I couldn't pre-write my letter to you.  I am unsure if I am more astonished 67 Mondays have passed without you here or that I have written you 67 unanswered letters.  This last week Meena decided to try out for the competition team at gymnastics.  She made it on to the developmental team.  She is not exactly thrilled that she is with younger kiddos, but I remind her she literally started her journey 7 weeks ago (this week) and they have been practicing for years.  They told her she is advanced on the floor and beam, but that her bar skills need improvement due to lack of strength. So, naturally, I have downloaded conditioning charts and I am fairly certain in no time she will be moving on through the developmental team groups.  In fact, while at Bear Pines this weekend she taught herself a back handspring and backflip on the trampoline.  (If you could spot her every time she tries these you know I would be forever grateful).

On Sunday we all came to visit you with Tzvi's hockey trophy. I am sure you knew because we felt your winds.  We took our family picture with your gravestone and gave an extra shoutout for all of your help this season helping your brother and his team with this achievement.  If it isn't too much this week is his tryout for next season, we are really uncertain which of 3 teams will be his best fit, so we will see what gets taken off the table on its own before it becomes his choice.  These things are always so stressful for me.  I know whatever happens will be what is best and meant to be, but it is just so hard watching your siblings feel disappointed.

This Sunday started "birthday week" for Meena.  I don't understand how she will be 8. I still remember dragging her all around town to all of your therapies watching Frozen a dozen and one times when she was hardly 2.  I miss that I would have an 11, 9, 8, 6, and 3.5 years old.  I don't know how you are 6, so everyone else aging is really challenging for me.  On the same note, Tzvi started his "Ten weeks until ten".  His first gift was a 4 pack of hockey stick holders for his bedroom.  He is going to have a hockey room transformation.  I don't really understand all of this aging business, to be honest.

We leave for NY in a month and 2 days.  I may bring Mermie with me, even though I know it isn't a replacement for you.  It just feels like I am always leaving something somewhere when it is just the fact that you are not with us.  Today was Yizkor again.  I was caught off guard when I remembered Sunday night.  I am sorry I didn't have my red candle for you.  I won't make that mistake again, but thankfully Morah Zupnick had a pretty holder for a white candle for you.  Maybe it was because I was caught off guard but the last 36 hours I felt like I fought back tears more than I had this last week.  So many conversations brought lumps into my throat.  Ones I have had plenty of times, but for some reason or another were harder to have.  It is so random how grief happens.  I think that is something I accept but am still surprised by.  Maybe grief finds it comical to change things up, to make sure we don't get too complacent and that we remain on our toes?  Who knows?

Anyway my love. I hope you are being safe and having a blast!

Until next time.

Love always, 

Ema

66 weeks

Dear Sonzee, 

Another week down, but an eternity to go.  This past week, I finally found the time to decorate some more rocks for you, and finally added them to your home.  I won't lie, I find it increasingly irritating now when I walk the rows and see how many people are "flattering" me by painting their loved ones' rocks.  My personal feeling at this point is if it isn't for a child, no adult requires painted rocks.  Maybe that's harsh? Maybe it's unfair? Either way, I don't particularly care, I just want everyone to remove the painted rocks that were only painted after seeing all of yours. I get it, I know it is a great idea, but it was my thing for you and now it just feels like it is everywhere and it takes away the special meaning it had for you, for us. I can admit I am bitter and annoyed, but I won't apologize for it. 

We have started to pack for camp.  I know it is 6 weeks away, but I wanted to make sure we had everything all together and organized.  It is the first time since you have been gone that I am actually preparing for something more than an hour before.  I don't know how that makes me feel.  I know I am so excited for your siblings but also a little nervous for them. For myself, I am really on edge.  Naturally, when it came time to prepare for summer it was the routine thing to just rent the same place we have always stayed in, the one you lived in every summer of your life except the one when you were first born because we were afraid to be too far from a children's hospital.  Now the reality that I will be staring at the walls, and looking around the house at all the places you did various things, is setting in.  Summer is our time together, no nurses, just Sonzee and ema days (and for a few years we shared it with Noam).  This summer everyone will be in camp, and it would be back to just us, so now, it will be just me.  I am calling it the "summer of Randi", but really it is going to be more the summer of feeling and being lost.  I can think of all the intentions I have, similar to the ones I used to have for you during the summer, that I most likely won't achieve.  Maybe that is for the best? I mean I haven't really had any time to really grieve alone or figure out life since right after you died the school closed, and your siblings came home, then I went back to work virtually and even worked ESY last year so never had an actual break. I am dreading the unknown, but my life with you prepared me for that, so maybe I will find myself better off than I imagine? 

Yesterday was mother's day.  Year #2 of being tough.  My heart was breaking as I opened everyone's custom gifts for me because it meant I wouldn't have one from you, but somehow you and your twin girl knew what I needed and found a way to make it happen.  I am fairly certain I gave Niagra Falls a run for its money, but I am just still speechless.  I feel it just solidified to me that you and Laeya's bond is unbreakable, and for that, I am beyond thankful. 

Did I mention last week that Nurse Paige came over for breakfast? We all loved seeing her. We weren't sure if Noam would remember her, but she asked her where you were.  You and nurse Paige were one and the same to him, really to all of us.  A girl and her shadow.  It was almost like old times, except her reason for walking through the door wasn't around so she had to settle for the rest of us.  Don't worry, I made her a couple of my signature coffees and an awesome breakfast sandwich.  I look forward to her coming back.

Anyway my love.  Missing you as always. Stay healthy and safe.

Until next time.

Love always, 

Ema

65 weeks (15 months)

Dear Sonzee, 

Today is a double whammy day.  It not only marks another week that has gone by but another month that has come and gone without you here.  Who would have thought that the pain in my heart could grow?  It is similar to when someone becomes a new parent and doesn't quite understand how they can now love someone so much and the love towards them only grows.  15 months in and my heart feels like each day it shatters a little more and it hurts a little more. I won't be so naive to think it will ever get better, but it fascinates me nonetheless that it can continue to do all those things.  It almost places a value on the amount of love...it really is infinite to an exponential form, which isn't at all making this journey any easier knowing that will translate into emotions of grief.

This month of May wraps up another school year for your friends at FBC.  I am planning on attending two of the graduations, we will see how well my powers of out-of-body experience work.  I know I would never be required to attend, but I want to be there. I just don't know if my desire to celebrate their achievements will win out on my ability to watch other children do what you weren't able to do.  While we never did find out what your school placement for this year would have been, the assumption is you would have stayed at FBC or participated in the program in some way half the day while also attending PHA.  So, it completely takes my breath away that in another 17 days you would be finishing up Kindergarten.  Sometimes I have to try really hard to remind myself that you were going to be a first-grader this fall.  I wonder if there will ever be a time your age won't confuse me.  I still wonder how you have been gone only 15 months and you have aged 2 years.  You were 4 when we said our goodbyes and you would be 6 right now...my brain fails to register that without an immense amount of effort.

Last night we had a camp meeting for your older siblings.  It left me in quite a tizzy being all sorts of overwhelmed with the reality that I will not have them around for an entire month and there will be no visiting day.  A quick email today had them reaching out to me by phone to try and comfort me.  Who knew that my brain would take a summer overnight experience and equate it to your absence?!  I have learned there is just no reasoning with grief so I am thankful for those who hold my hand and walk with me through it.  While there will be no way for me to give them hugs, there will be a way to speak to them whenever I need to. I wish HaShem could work something like that out for me and you.  65 weeks and I swear I feel like you are only going further up into heaven, further out of reach, further out of my familiarity.  I wonder if I were to see you if I would even know you.  Would I walk by you? What would you look like now?  I feel like the parts of you I once knew don't even exist in the world you are part of now.  

I hope wherever you are that you are surrounded by comfort and maybe even more love than you had here if that is even possible.  I hope you at least come and check on us and smile and then go on your way.  Maybe you were the hummingbird lingering outside of bubbie and pop-pop's today. (PS: They got a little puppy, his name is Maximilian, he is currently 3lbs. You would have loved his snuggles and he would have never known what was coming when you would've inevitably kicked him off of you.)

Anyway my love.  Nothing is the same here.  15 months feels like forever, and 65 Mondays seem incomprehensible.  

Until next time.

Love always and forever, 

Ema

When it's dark...

Tonight was the big kids camp meeting for summer COVID19 protocols and guidelines.  The meeting itself lasted an hour, but the immense feeling of anxiety and fear are still going for over four.  Maybe it is because today is the 2nd day into a new month, and history states new months are my downfall.  Maybe it is because today is officially bereaved mother's day.  Maybe it is because tomorrow marks 15 months, the 65th Monday since she was last here.  Maybe it is what would have happened during the same meeting if Sonzee hadn't died and it was going to be year one for her two oldest siblings to be going away from me for a month and her one older one for 8 days. Regardless, here I am.

The meeting explained all the testing and conservative procedures that will be occurring.  I honestly don't mind them, they seem fair and appropriate, and will hopefully result in a minimal to no corona exposure experience for all of the thousands of kids that will be attending.  What actually began the tailspin in my mind were the words "no visiting day".  I anticipated this would be the case. I assumed they would want to limit the exposure of the virus into the camp, but hearing the words made my eyes begin to fill with tears. But why?!  I sat listening to the guidelines continue to be spoken and continued to take notes while simultaneously texting a friend to explain everything I was being told.

Almost an hour from the moment I wrote the first text my brain shed some insight into my panic.  It isn't the corona protocol, it isn't even really the no visiting day.  It is the fact that my children are going away and I can't talk to them and they can't talk to me, and my brain told me not to worry because 12 days in I would be rewarded with a hug.  Instead, now it will be an entire month...and I have to remind my brain that this time it isn't because they are joining their sister (heaven forbid).  As of tomorrow, 65 Monday's ago I kissed and said goodbye to Sonzee and that was the last time I saw her, the last time I could hold her and talk to her.  While the rational part of my brain knows it will be seeing pictures of her siblings daily and it knows they will be having a fantastic summer experience, the grief-stricken bereaved mother of theirs is trying to separate out the reasons for their absence and emphasize it isn't permanent, and they will be coming home.  It isn't something that is even easy to make sense to someone who hasn't buried a child.  I can't 100% say it makes any sense, but in grief, rational doesn't exactly have a track record of a first-place win.  

When the idea of sleep away camp first entered my mind I had five living children.  The tears that filled my eyes were a mixture of excitement and remembrance of my childhood summers away from home.  Then Sonzee died, corona happened, and this journey began on quite the detour with splashes of a previous life mixed in with life after.  Every day I try my best to pretend that the loss of a child isn't living through trauma.  I try to remind myself that nothing is up to me, it is all out of my control, and like the quote sitting on my desk staring me in the face, I feel like the only thing I can do is "when it's dark look for the stars" because otherwise, the black sky is just all too much.

64 weeks

Dear Sonzee, 

The immediate words that want to write themselves onto this page are it's been another week.  Yet, for this week I want to start with, How has it been so long? How does it keep getting longer? How does time on the clock continue to move on creating the absence of seconds, minutes, hours, days, weeks, months, and eventually years? How is the world still spinning without you here?

Some moments almost feel normal now.  Scrolling through Facebook seeing your CDKL5 siblings and schoolmates who are still here brings me a momentary pause as I swallow the fact that it isn't my life anymore. I am a stranger to that world now.  I can't relate to that group except to tell a story where it starts with, "I once had a medically complex child".  To be honest I can count the number of times I have said that in the last year, I apologize for that.  It is a mixture of a lack of energy and it is just really hard to bring you up.  

Last week I was out and someone, a stranger asked me about my necklaces.  I paused for a moment too long, sighed a deep breath, and said, "well this is going to get awkward".  I mentioned that I had a daughter but she passed away, and naturally her reply was "oh I am so sorry".  My mouth said "it's ok", but my mind screamed, "no it's not but don't say anything aloud, just swallow it down and don't talk anymore".  She continued to talk.  Some days I yearn to be asked about you, some days I beg for the conversation to continue.  It wasn't one of those days.  It was a day I just wanted to go about my day and not have to explain that I walk around with a fingerprint of my dead 4-year-old and her birthstone around my neck along with a hummingbird and a quote, and one of my favorite pictures of you etched into silver.  

Later that day I went off to Bear Pines by myself. I almost feel bad I left aba to deal with your 2 sick sisters, but truly I needed a mental health escape, and they were coming up for the weekend anyway.  While I was driving I started to think of titles of books I have never written related to you.  It took me only a few hours to figure out that it was time to begin to fulfill a childhood dream of mine to become an author and have you be the muse. We will see where it goes and how long it takes.

The weather at Bear Pines was perfect. It was windy and chilly, but not too cold.  Your wind chimes didn't stop singing.  I am waiting for the leaves to start to grow back on the trees in front of the house.  I finally hung 2 more sets of rope lights in the backyard and we folded the hockey rink tarp in a better way for storage and took down the broken ninja course.  We are starting to have more renters booked, which is exciting and nerve-wracking at the same time for me. It makes me smile that you inspired an amazing place for families to be able to escape to together and relax, I just sometimes wish that I could've had you and Bear Pines.

Anyway, my love, if you could send the powers of health to our house that would be great.  Noam has been down for the count for the last 2 days now, and aba, Tzvi, and I would like to stay spared.

I hope you are staying healthy and happy.

Until next time.

Love always, 

Ema

63 weeks and 1 day

Dear Sonzee, 

Another week.  Another 8 days to add to the time I haven't been able to hold you or give you a kiss.  Another 192 hours.  When I thought about what I was going to originally write for the 63-week post I anticipated being in Florida pretending life was vastly different than what it has turned out to be. I thought about the figurative reset button being pushed and how when I left in the middle of the week I would be refreshed and ready to go back to normal.  Instead, the reality and my plan (as usual) were on different pages and I am writing to you while sitting on the blanket that we received a year ago at our orientation for grief group, that I placed on top of your hot black granite bench so my butt doesn't burn.

The plus side is that on a good day your absence feels like I have forgotten something (really important), being out of state only adds to that, so it is at least a bit better from that perspective that I am here.  On the reality side of it all, I am really still completely disappointed and saddened that I didn't get my much-anticipated break and bonding with Elle.  It has made me realize that there really is no escaping this new normal.  There really is no way to escape or reset anything.  Your absence just follows me all around and the sadness while shelved for little bits of time can't actually ever vanish.  Not even with the best of intentions.  (PS: It really really sucks!)

I feel like I will be in some forever funk.  I am trying to distract myself, but I keep failing.  Maybe the point in all of this is to realize I just have to give in to it all and deal with it, whatever that even means.  Maybe I just need to accept the reality?  I never could accept your CDKL5 diagnosis, so I am holding out very little hope that I will miraculously figure out a way to accept your death.

Aba and I can't seem to allow any of your siblings to claim your room, so it still is yours.  We have however finally given in to giving Laeya and Meena their own rooms by moving Laeya into what was formerly known as the guest room.  Funny enough, that room and its ADA-compliant bathroom were intended for you, but we realized quickly after creating the plans and living with your seizures that running across the house all night long wasn't going to work and so what became your room was created.  I think it will be perfect when they are both set up, but I am a little blah about the change.  I just liked that we had this extra room for guests (although we all know it has hardly been occupied).

We are going to Bear Pines again this weekend.  Trying to get all the weekends we can before all of the bookings and our summer in NY.  The end of the school year is sneaking up on me and before I know it, it is going to be June and we will be on our way to our first summer in VV without you.  It is going to be a challenge, I won't even pretend it won't be, but for now, I am doing what I do best and putting off any of those thoughts that might provoke my anxiety more than it already is.

I hope you were able to meet Brucie as she crossed over the rainbow bridge.  I hope you guys are back to snuggling and that she makes you miss homeless than you might have been.  I hope you are a comfort to her as well.  Bianca has taken up her space in bed and still goes into your room and lays on your bed on all the clothing I have yet to send out to get made into a quilt.  We did have one quilt made, but so many people offered to make and we have so much of your clothing that I am having one made for each of us along with pillows.  

Anyway my love.  

Until next time.

Love and miss you always!!!

Be healthy and happy!

Love always, 

Ema

Escape

Sometimes things don't go as planned, well, let's be honest, sometimes life doesn't go as planned.  There is that Woody Allen quote saying if you want to make G-d laugh, tell him your plans. For me, I would say that is the theme of the last 6 years of my life.  I am sure to G-d there is a reason, it probably makes perfect sense to him, but for me, I feel like I am left unsuccessfully trying to sort out the pieces of a million-piece puzzle while he sits back with a large cup of coffee feet kicked up on a table and laughing as I attempt to make the pieces fit together.

The last 14.5 months in our house have been tough. I know it is similar for many, but really the loss of Sonzee made the COVID19 isolation component a walk in the park for me because nothing is worse than grieving your child.  In some ways, it was a huge benefit, a great excuse to hide away and not have to face any sort of reality.  Buying Bear Pines was one of those let's try and change something up consolations.  A false trick that seems to occur in the minds of many bereaved parents.  The ridiculous thought that purchasing a couch, a house, or going on a vacation will make us somehow feel better over the loss of our kid.  My mind has even gone as far as tricking me into thinking a change of scenery or tackling various projects will also somehow cushion the reality. 14.5 months in and an unplanned schedule change makes the obvious even more obvious.  There is no escaping reality and there simply is no escaping grief.  No amount of physical distance can actually distance the looming reality of grief.

Grief is that unwanted passenger in your I want to have a moment of silence in the car. Grief is the replacement of the 1000 item to-do list related to the person who isn't around. Grief is the voice in the back of your mind reminding you of a person impossible to forget, but yet, somehow, that fear is one in the forefront of your thoughts.  Grief is the reality that despite the attempt to change your location or surround yourself by your life from the past in an attempt to pause the present, sometimes life just doesn't go as you planned.  Sometimes your attempt to run away is derailed and you're forced to stare your reality in the face, and maybe, just maybe, G-d isn't sitting there laughing while he is holding his cup of coffee.  Maybe he is actually sitting there nodding his head as you figure out that the entire purpose is the realization that your feelings of derailment from your plan is just simply the way to get you back on track to what is actually the real plan.

62 weeks

Dear Sonzee, 

Another week has gone by,  Today marks 12 days into the month of April.  I have to ask why time seems to be picking up pace?  I am left to wonder if it felt this fast when you were alive because I feel like I can't remember.  They say grief can affect your memory, I sometimes have a challenge placing the blame on grief, but it is either that or early-onset dementia, and for now, grief seems to be a lesser evil of the two.  The thought of experiencing memory loss that would erase what few years I had with you makes me panic, so despite it being so awful, grief it is.

We finally got up to Bear Pines over the weekend.  It was beyond beautiful weather, still cold, and required warm blankets in the morning to sit outside. We took down the ice rink that turned out to be quite a failure but also a learning experience.  We are unsure the tarp is going to be usable next winter, but we shall see.  We uncovered the trampoline and got the net and everything all set up.  Everyone was jumping all weekend, even ema, that was probably funny if you saw me trying to do tricks.  Sadly the ninja course also met its demise since we never got it down before the snow began to fall, oops. Live and learn they say, and considering it was aba and my first home ownership during a real winter I have to say we did well overall.  The leaves on the trees are still absent in the front of the house, but the birds and squirrels were out and about more than the last time we were there, and as always the weekend was just what I needed.  We hung your wind chime in the backyard and now it feels like you are fully surrounding us there with the other wind chime on the porch.  

Yesterday was Laeya's first friend's bat-mitzvah.  Talk about feeling aged.  Her parents were the first friends' aba and I made in Phoenix.  I met this little girl as a brand new baby before we even knew we were pregnant with Laeya, and I still see her as this little baby, not the grown-up beautiful 12-year-old girl she has become.  I watched Laeya from a bench on the side take her first photo booth picture with 2 other friends and wanted to cry thinking about how in 9 months we will be celebrating her (without you there).  I sent the picture to Miss Jenn and all I could see when I looked at it was her and me circa 1996/1997 and it's just insane.  I can't lie, looking 9 months into the future, I feel like it is going to be a challenge to celebrate your sister while also honoring your absence, I am not looking forward to the struggle, but maybe beginning the planning so far in advance might soften the blow?

This week I am going on my first solo vacation in almost 2 years.  I have gone away very little since becoming a mom, but every time Elle or I have a baby you know that we travel to each other.  The last time I flew to her, you accompanied me.  It was the day after that trip that you and I took up residence at PCH for close to a month because we learned just how severe your GI issues really were.  I am so excited to be going on this trip, but in the back of my mind, I am panicking over how I am going to handle all of the emotions during it.  I guess that is just going to be a recurring theme in my life from now, happiness tinged with panic, sadness, and a hell of a lot of missing you and wishing things were just different.  

Anyway my love.  Be well. Be safe.  Be happy.

Until next time.

Love always, 

Ema