77 weeks

Dear Sonzee, 

Today marked 77 weeks.  It is our last Monday in NY and it is also Tzvi's 10th birthday.  This last week was jam-packed and a funfilled one as we picked up Laeya and Tzvi from camp and then dropped off Meena for her 9 days of sleepaway camp trialing.  A week ago Miss Malka and I went to Woodbury without you but brought you with us in conversation.  It was mixed tears and laughter.  We really missed your wheelchair because we had nowhere to put our bags.  We talked about the time your foot accidentally got stuck in the door.  In hindsight in that 2018 year, we wonder how often we accidentally fractured your legs before we learned that your bones were so brittle that they could break with a simple tap. We are so sorry about that.

We picked up Laeya and Tzvi on Tuesday.  Both absolutely loved the camp experience, unfortunately, Tzvi didn't exactly love the specific camp.  It's ok, we found a new one for him to try next summer.  Laeya is already excited to go back to see her summer friends, she can't wait.  We gave her saba's old iPhone 5s to use the cloud to talk to her friends.  We will be happier when we go back to Phoenix time and she isn't on it so much, but it is nice for her to have this group of girls that she is loving to talk to.  

We took Meena to her sleep-away camp trial.  She is having a blast. She called us Friday to say "good Shabbas" and that she was having so much fun.  The camp doctor called us yesterday to let us know she hurt her foot, but I saw in the pictures that she didn't exactly take her advice to rest her foot and stay off of it, evident by her rock climbing.  What do we do with that one?!  We pick her up at the end of this week.

We finished off the week heading to uncle's and Hay-Hay's and went to American Dream Mall to celebrate Tzvi.  It was bitter-sweet as it is another age you won't ever turn and we had no accommodations that were needed to be made for our day today.  I had to put the big girl panties on to make it through the day without the tears...which I did quite well if I may say so myself, but my heart was constantly aching and the tears blended in well with the water park atmosphere. 

 

We have one more week left in NY.  I don't think any of us are really ready to go home, but we are excited to be going to Dallas to see the Howard's, and ema does need to get back to work. 

Anyway, my love...missing you as always...so much!

Have a great week!  

Until next time.

Love always, 

Ema

76 weeks

Dear Sonzee, 

Today will be the completion of 76 weeks without you.  It is the 5th Monday in New York without you, almost seems surreal.  This last week your New York family painted you rocks for me to bring home to you.  We simultaneously packed Shabbas boxes for hospitals in the Tri-state area.  I wish during all those shabbas' we spent in the hospital together we had been given these boxes.  The only time we ever had anything like these boxes was when we were in CHOP together.  

This week was a bit more challenging for me for a couple of reasons.  The first was that I have been really missing you and so many people here park illegally in the handicapped parking spaces and it just strikes a chord.  I have been unable to say anything to anyone since you have died, but it doesn't change the anger that builds up inside of me.  This week I managed to open the parking mobility app, and stared someone down so hard through their window they never exited their vehicle but she did look like she was searching for her placard and couldn't find it.  I won't allow myself to talk to anyone because I have created a dialogue in my mind that would inevitably boil down to the person asking me if I need the spot and me bringing up the fact that my reason for the spot is no longer alive, them not caring, and me falling apart in front of people who don't matter.  So, while I want to slit their tires and wish them the need to actually require the use of the spot, I just continue to keep it inside.  

In addition to the parking issue, I have felt so somber because while the world continues to care solely about Covid, everyone seems to continue to forget about RSV, the flu, and other colds that can also kill various populations.  If it isn't corona, no one cares, and it makes me horribly angry and sad!  The last summer you spent here we spent 2 weeks driving around to various hospitals to find out you had adenovirus, you know, the other fancy name for "allergies" that no one cares about.  That's what started your downfall.  Or rather, it let me know your body was beginning to fail.  It really breaks my heart that people just. don't. care.  The world feels everyone should protect the most vulnerable, but only on their terms, and only when it is them who is vulnerable.  Remember how many things we missed out on because I had to make sure you were protected as much as possible?  The world never went out of its way for the small percentage of you and all the rest of the rare.  (PS: they still don't, unless of course, it is covid-19 and then they expect everyone to protect them (insert ema's eye roll)).

This was the last full week without Laeya and Tzvi.  Aba and I are SO excited to pick them up Tuesday.  It doesn't help my heart that I get to pick them up, but haven't been able to bring you back to me.  Hard to believe their month of summer is already over.  Hard to believe summer, in general, is almost over.  I am still torn on wanting time to slow down because that means it will be longer until we meet again, but also not wanting it to keep flying by because that means it is further from the last time I last held you, looked you in your eyes, and got to tell you I loved you while I gave you a kiss.  

This week I walked into a store and was looking at charms when I was caught off guard by the one that had 3 hearts with "big sister", "middle sister", and "little sister".  Sometimes I wish I had a brown bag with me to breathe into when I get punched in the gut.  Instead, I snapped a picture and sent it to Mrs. Zupnick along with the gif of someone being punched in the stomach by a wrestler.  Maybe one day I will buy it and either keep your heart on my necklace or bring it to your grave for you?  I also saw a mother/daughter necklace and it had only 2 daughter parts and that made me feel sick because I would need three, but could theoretically get that one.  Needless to say, I left them all on their shelves.

Anyway my love.  I guess that is all for this week. I love you and miss you lots!  Continue to be safe and happy and free!  

Until next time.

Love always, 

Ema

75 weeks

Dear Sonzee, 

It's crazy that it has been 75 weeks.  75 Mondays that you haven't experienced.  75 Mondays I have experienced without you. Somewhere along the way, I have even stopped picturing what we would potentially be doing together.  Instead, my mind wanders to what you might be doing with your independence and complete freedom.  The problem with that is that my mind I am sure limits your potential because you probably have no restrictions and can do literally anything and everything, including things my mind cannot even comprehend.  

This week Meena and Noam continued to enjoy day camp.  Meena won an award and Noam has all the counselors wrapped around his finger.  He is like the little "big kid on campus", everywhere he goes they all call after him, he eats up all the attention.  Laeya is loving camp, we got to speak to her for a little and Tzvi didn't complain but mentioned we should find a hockey camp for next summer.  You know how difficult is it to keep him excited about anything other than hockey for lengthy periods of time, such a pain.  They both have colds, but that is definitely par for the course.

We haven't made it over to Kelder's Farm yet, we were supposed to go yesterday, but the weather was not on our side.  To be honest, I keep seeing the pictures pop up and I am torn on going this year in general.  It will be with either you and Meena missing or you, Laeya, and Tzvi, and honestly...maybe it means we should just stay away?  

I have been doing some reading and have started to needlepoint. I am making Tzvi his talis and tefillin bag, figured a little less than 3 years gives me ample time.  I have been on a roll, but have a feeling wherever I finish off this summer is where I will pick back up next summer.  I actually look forward to working on it a little bit each day, so that is good.  

So many people have continued to seek me out to talk about you.  The only slightly awkward time was when one of Meena's friends asked about my necklace after looking at the charms and I explained Meena had a sister who died, and she looked confused and said she thought she heard me say you died, and I had to say that I did say that.  Noam mentioned he wanted you to come home the other day.  That is the 2nd time in the last 6 months he has said something about wanting you to come home.  I hate having to break his little heart by reminding him that you can't come home because you died.  

A few times, aba and I have talked to people who haven't known us and the conversation quickly turns to kids.  Thankfully the phrasing of the question keeps the conversation light and doesn't require us to explain every detail of our lives.  The topic quickly turns to blanket statements about camp and then they ask who is at camp.  It isn't that I don't want to bring you up, it is just I am in this weird place where I don't necessarily feel it is everyone's right to know about you.  The initial reaction from strangers is always "I am sorry", or some other platitudes and I don't feel like telling them "it's fine" because it is not, it is better to just avoid the entire situation. I did joke with aba that at one point I might just throw out that you are in camp heaven and see how much of a double-take people do.  I mean, it could be fun. "I have 2 kids in day camp, 1 in camp heaven, and 2 in Moshava".  

Anyway my love. I hope you had a great week and do again this week.  Love and miss you!

Until next time.

Love always, 

Ema

74 weeks

Dear Sonzee, 

Hi again! Another Monday about to be in the books.  It is funny when people ask me about the length of time it has been since you died, or say in a question form, "oh, it's been a year and a half or so?" I reply to the answer in weeks and mention that's how I count the time.  I do wonder if at some point I will round off to the nearest month, start to include the word year, or answer differently, but for now, there is some comfort in the weekly count.  Maybe it is because it is a big enough number to communicate how long it has been, but small enough that it feels like it hasn't been so long.  Counting in weeks also requires a second or two of time if someone wants to do the real math of how much time has really gone by.  People know it is more than a year, but it still falls within the realm of it being not long ago.  It is all a mind game at this point, so I really have no good answer to the why.

Meena and Noam have been in camp for a week now.  They both seem to be having a good time.  Meena is now in G3 and Noam in the Camp House.  Meena was once in his room, so it makes me smile that he is following in her path.  I will always wish we could have found a summer camp for you.  Nothing ever panned out, and sometimes it makes me angry that no camp had the skill sets to take you, but I am thankful you and I got to shop until we dropped and spend our time hanging out.  I think back to the camp who told us that you were too complex, but maybe next year. I wonder what they expected to change in a year as if some miracle was going to occur that would remove your seizures and make you walk. I mean, that supposedly is the hope that many of the CDKL5 community pray for but as a camp, I think that was a little bit off the mark as words of rejection.  The truth is, we probably weren't even going to send you unless we buttered up Nurse Paige to spend the summer with us, but I wanted to be the one to reject them.  And also, we never got to see the next year, so there is the really angry part of me that wants to call them up and tell them it was their fault that you never got to experience a camp setting and now you never will.  The small bit of rationale ema that remains knows not to be mad at them because if they couldn't care for you I am grateful they were able to admit it.

Laeya and Tzvi appear to be having a great time.  Your brother has a knack for avoiding as many pictures as possible.  Aba and I have developed some mad skills being able to find him in the background regardless of his attempts.  He also hasn't sent us any messages complaining, which we all know he would if he needed to.  Your sister is all smiles, all the time, and I am just so happy for her and this experience.  I LOVE that she is having such a great time with her summer friends.  In a pre-covid world, we would be visiting them in a week, but due to the closed-off campus, we are not going to be able to.  After their 4th corona test, the camp announced last week they are 100% corona free so they removed their mask mandates while around other bunks and are back to a more "normal" camp experience. That makes me even happier for their experience.  

Uncle and Hay-Hay came to spend July 4th with us.  Remember when Uncle would sing your beat-bo and bow-wow songs and when he would lay on the floor next to you?  We instead introduced him to the chicken nugget and chicken wing songs, he will be sure to thank us when those pop into his head during a work meeting.  It was a semi-tough day yesterday, so naturally, besides Meena and Noam wearing some red, white, and blue, there was no matching outfitting going on or anything.  Facebook memories made me smile but also broke my heart.  I hope you matched your friends with outfits and wore a cute bow or headband!

Anyway my love.  Missing you like crazy!

Until next time.

Love, 

Ema

1 year 5 months

Dear Sonzee, 

It has been another month (and one day really), and tomorrow marks the 74th week.  I don't really like it when the milestone week and month dates are so close together.  In a sense, it makes things more challenging for me.  I think it is because it requires a lot of reflection of my emotions within a short period of time and that is really draining and horribly painful for me.  The weekly posts are rough as it is, but to reflect on another month that I had to balance life without you is something that just becomes progressively difficult. 

This month reiterated how year 2 continues to be more challenging than year 1.  This month solidified the accuracy of my "fantasy fears" as I was right at just how painful revisiting a life without you that we once had with you can be.  This month I can really see how much of me was taken with the end of your life.  The shell of me still remains, there are still remnants of a person I once was, but the new me is nowhere near the same.  I am okay with that, I just wish everyone else truly could accept that things won't ever be the same.  

Auntie A painted you your monthly rock this time.  She placed it next to the others and also gave you the July 4th rock I painted before we left.  I have a month left to decide what soapstone animal will be placed on the top of your book.  It is hard to believe next month will mark another 6 month period that will have passed.  It will be an entire 18 months.  It takes me back to a time I asked the designer of an Etsy store to customize an "18 months" shirt for you because we never knew how many milestone dates and birthdays we would get with you and I wanted to celebrate it in case you didn't celebrate your 2nd birthday.  We only ended up with 4 true birthdays...I am thankful I celebrated the 1/2 one as well.

This month taught me that I can decipher between your siblings' being away and your absence.  It may sound crazy, but a month ago the idea of not being able to communicate with them in our typical manner sent me into a tailspin.  It was similar to reading all the parenting books before Laeya was born, it made me confused and anxious because I couldn't understand a breastfeeding schedule when I didn't have a child to apply the practice with.  It has been 11 days and I can survive with modern-day technology bringing me pictures and videos, one-way emails, and staff who are able and willing to keep me updated if needed.  If only there was some system in place for you and me.  Instead, I have purchased every book under the sun to try and make sure I am to receiving signs from you.  I feel like I need as much assistance in this area as I can have.  I am guessing this will be a lifelong struggle for me.

Well, baby girl, I am off to write your next letter.  I hope this month was easier for you than for me!  I pray you to continue to be free of pain and revel in your freedom!  Stay safe and have fun!

Until next time.

Love always,

Ema

73 weeks

Dear Sonzee, 

At 1:08pm (PST) another week has gone by.  This time it finishes with you being joined by another CDKL5 sister.  Being that I removed myself from the CDKL5 support page a year ago, it was Harper's mommy who sent me a text about the situation when she first heard about what was happening.  The eery similarities that fall within the realm of death of you all make me a good portion of sick.  This time, it didn't follow the way your end of life unfolded, but instead another sister of yours.  I wish someone would do research on the deaths already, but I am just not strong enough for the battle that would take.  Sadly, in time, research will cover that as well; you know after enough of you have left this world.

When she first sent me the text, my response was that I didn't have the strength to reach out.  After a few days, I put on the big girl panties and did what I could.  Her mom told me last night she appreciated what I did this week despite how hard it must have been...one day (soon) she will know exactly how it went down.  That makes me even sicker than I already feel.  I hope you and the rest of your CDKL5 siblings were there to greet her!  I hope you have taken her under your wing.  I imagine even if you all do your own thing on a normal day, on days like today you come together like a huge camp reunion to show each other the ropes.  I know it softens my anger and helps me rest a bit at ease thinking 73 weeks ago the same was done for you.

This week has utterly sucked.  There is zero sugar-coating how it feels to be back in TH49 without you.  I initially breathed a sigh of relief not seeing the blankets we used to lay on the floor for you to roll on.  The ones I wondered if anyone else ever used or if I was the first and last one to wash them each year.  Then I went upstairs to the room you used to share with Meena, the one we don't need to use this year, and there they were...organized neatly on shelves staring me in the face.  I walked out of the room and closed the door.  I keep that door closed all the time.

So many people have mentioned you.  There is a part of me who wishes they wouldn't.  I can see it in their eyes from 10 feet away as they make their approach that you are on their minds.  They have a look on their face that makes me want to run away.  Instead, I embrace them and the words come out of their mouths.  They mention your name.  They do make me smile.  I would most certainly HATE if they didn't mention you, but there is ZERO winning. I can't always stomach a conversation about you but I wouldn't be able to survive without having conversations about you.  The truth is that people don't know what to do or say, and neither do I.  This life after you is really hard, even 73 weeks later.

Laeya and Tzvi appear to be having a great time in camp.  I made the mistake of not sending them with trunks of food nor Tzvi's hockey stick...live and learn.  Oops!  The camp of course took it upon itself to make sure your brother now has snacks available at his whim in his bunk.  Every video and picture of them makes me smile and reassures me that they are having the best summer.  We took Noam on his first official train ride yesterday while visiting Aunt Ronit.  He couldn't get enough so we told him we would do it again and go into the city.  He and Meena started camp today.

Anyway, baby girl, we miss you beyond words!  Stay healthy and safe!

Until next time.

Love always,

Ema

72 weeks

Dear Sonzee, 

We have finished up another week filled with your absence.  Yesterday, which officially marked 72 weeks, we landed in NY and drove up to VV.  I anticipated the experience being all around upsetting, and as I also warned myself, it ended up being worse than predicted.  The ease of flying with 4 mobile children, not requiring the assistance of TSA Cares or any additional help, not having any additional stares, not having the stress of getting on the plane first to be the last ones set up and buckled...it was the worst type of slap in my face.  Laeya mentioned more than once how it was the first time she could remember not skipping the lines and not going on the additional assistance lane to get through airport security.  She continued to bring you up during the flight, saying how she envisioned you and your friends flying with us up in the clouds.  The good mom in me let her keep talking out her grief...the post-Sonzee bereaved mom was screaming in my head for her to stop talking because I didn't want to hear all my thoughts being spoken aloud.  I didn't want to be crying at the airport or on the plane.  Life is just an extra dose of hard. 

In preparation for our flight, the week was spent packing Meena, Noam, Aba, and me.  I also ended up getting a new phone before we left Sunday, and despite the sales guy saying "now the hardest part, picking the color", it was actually the easiest decision choosing it to be red in honor of you.  I bought Apple Care and it supposedly is difficult to break, so for now I will just keep it uncovered and have the red visible 24/7.  The alternative is to get a 3rd phone case made up of our last all 7 of us favorite family pictures circa summer 2018.  

Meena had a quick tryout for the competition team for gymnastics on Friday.  She can go on the team, but, unfortunately, the gym we went to cannot make accommodations for her missing the Saturday practices, so when we return in August, we will find another.

We went to see you Sunday before we left.  Aba took a picture for fathers day with you and everyone else.  A lot of people have asked to go and visit you while we are away, hopefully, some do.  Auntie A is making you your 1-year 5-month rock and she will place the July 4th rock I left for her to give you next week. I got Aba a new pair of red socks with your picture from you for fathers day and he was very happy to receive them.

Anyway my love.  We leave in a bit to drive to Pennsylvania to stay the night before dropping Laeya and Tzvi at camp.  This house is sure to feel an extra dose of empty besides the obvious of you and your belongings not taking up every square inch.  Remember to be sure to keep an eye on them!

Love you and miss you!

Until next time.

Love always,

Ema

71 weeks

Dear Sonzee, 

Today is another Monday you won't be part of, and it has been 71 since we last cuddled.  Next Monday I will be sitting in what has become our NY home, or maybe outside staring at the trees where I used to sit to blog while we are away for the summer.  I am trying to prepare for all that is to come next week but knowing my history, it won't matter because something I haven't prepared for will happen.  

This past Friday your siblings finally finished school for the year.  It is hard to believe next year Laeya will be in 6th grade.  I try not to think about you going into 1st.  My mind has challenges with the image because sometimes I create a completely fictitious one that involves you completely healthy and unlike the Sonzee we all knew and loved.  

Last Thursday was grief group.  The activity this week was to write a letter "from you" to myself (and aba's self).  I have done that a handful of times since you have been gone and it is always my biggest struggle.  I stared at everyone writing for the first 5-10 minutes, nothing could be written, but I finally found a use for those little tissue packs they have in our individual baggies.  I eventually managed to get some words on the page, but I felt like it was such a blah letter.  Aba and I don't typically talk about our groups with one another, but on Friday he asked me if we also wrote a letter, and then he showed me his.  His was far better than mine and I was a mess a few lines in.  

I found glitter/sequin boots on Alibaba for Tzvi's hockey team.  It was such a daunting task to be able to find the exact colors I wanted, it was literally a multiple hours endeavor of searching.  I hope when they arrive (if they arrive), they are what I am anticipating.  We got his tournament schedule.  There are 7, but we know we are missing one because we will be (G-d willing) in Israel. Yup, we are actually scheduled to go, sans you and nurse Paige.  That is sure to be a tough trip since it will be our first "complete" family trip, and it was supposed to include you.  Who am I kidding, life is tough regardless of any specific plans.

Please help us all remain healthy this summer, especially this week and throughout camp for your siblings.  Know we miss you a LOT!  

Until next time, 

Love always, 

Ema

70 weeks

Dear Sonzee, 

I am not quite sure how I just typed "70 weeks" as the heading to my letter to you.  How have I written you on 70 Mondays? The lump in my throat feels huge and the tears are already fighting with me.  This part of life just doesn't make sense, probably because it focuses on your death.  A concept that is honestly still challenging for my brain to wrap itself around.  Children aren't supposed to be buried by their parents.  You should have still been here these past 70 weeks.  Then again, you should have been born with a healthy CDKL5 gene also, so I suppose that discussion is literally for another life.

This last week was spent packing your siblings for camp. I had a minor breakdown while packing Laeya as I realized I won't ever pack for you again.  I packed some of her items into your large medical supply baggies, but not the ones that were still labeled with your information. Those I put back inside the largest bag and left them be.  I won't remove your labels and I won't use the bags ever, but they won't ever be thrown out.  Well, not by me or willingly at least.  Some of your stuff will always remain, and that is just how it will be.

Laeya is a little nervous about how to mention you to all her potential camp friends.  She asked me yesterday what would be the best way to mention you died.  I think she is worried it can be too intense, but also I think she worries about not mentioning you.  She wants to bring her Sonzee Bear, but she is worried about something happening to it.  We will have to figure something out for her.  I know you won't be too far from her while she is there, I hope she will feel your presence.  Who am I kidding, she would feel it before me. 

I have found myself so torn lately on this whole grief thing.  Part of me wants to lean into the fact that this was G-d's plan, and the other part of me is just so angry that this could be part of any plan.  It almost feels like I would be cheating if I attempted to accept the whole "plan" idea, but then part of me wonders if I did accept that if I would actually believe it if it would make me feel any better, and if so, for how long?  It is just so hard.  It all sucks. There is no way around the suck.

I am working on two projects that are inspired by you.  One of them is expanding the PEMU PJ closet that we started.  I am really excited about the direction that is heading.  We have a matching donor that will match up to $4500 and we are at $736 but have some time to go.  Regardless, we would be getting $1472 if it ended tomorrow and that is still amazing.  The other project will be announced within the next 2 months and I am really excited! I would much rather you here, but you are making such a difference in your death, and I will continue to ensure that remains the case.

Anyway my love.

I hope you are staying healthy and having a great time.  Be safe and remember you are loved and missed!

Until next time.

Love always,

Ema

When?

This last week I had a conversation where I mentioned that someone had lost a child.  The question was asked about the age of the child and I responded with I wasn’t sure but it was years ago.  The reply to that statement was along the lines of  “oh, well it’s been so long, whatever” I repeated the words in my mind while no less than 100 of my own thoughts filed in. “What?!”, “Did I just hear that correctly?”, “Did anyone else hear this?”, “Did they forget who they are talking to?”, “Did they forget Sonzee?”, “Is 1 year and 4 months also too long?”, “When is my time up?”

The conversation moved onto something else because there was no amount of time to say anything that was circling in my mind aloud, also, what would have been the point?! But days later and the conversation is still fresh in my mind.   I remember being told at the beginning of this grief journey I had 18 months before people will expect me to be over it. I remember feeling relieved every time I mentioned Sonzee died and I was met with a platitude vs hearing the words “you’re not over it yet?”, Or a similar knife cut phrase.  But technically there are only 4 months left on my timer and then I guess the compassion runs out. What then? 

How do you make someone understand that burying a child is something you NEVER will ever get over? Can someone who has not buried their child actually fully grasp that? Is it worth explaining that burying your child is NOT the same as burying a pet, a parent, a grandparent, a sibling and while maybe people can move on from those deaths, parents do not ever move on. (That is not to say any of those listed above should be moved on from either, it’s just to emphasize the loss of a child is not even on a comparable wavelength).

The worst part of hearing the words “oh, well it’s been so long, whatever”, was the reality that everyone else continues to move on.  Life continues to move on.  We look like we have moved on.  We go out and Sonzee is not with us. We act like life is normal.  There is no stark reminder that we once had 5 kids in tow.  She is for all intents and purposes easy to forget.  Maybe it’s our fault for not bringing her up in that moment? Would the statement have been said if they remembered that in a few decades I’ll be in the same boat of “it’s been so long, whatever”? I guess I would like to think if they remembered  that they would not have said that or else that means they truly believe those words, and if that is the case, I have to ask when is my time up?