Coming to a head

Dear Sonzee, 

Hi baby girl! How are you? I am sitting on the porch facing the lake in VV, for another summer without you. I was (as usual) holding everything together. Keeping myself (physically and emotionally) occupied to prevent the whispers of grief that I have kept at bay in that locked space. While I know 2 things can exist, I can enjoy my summer and I can miss you; I can continue to live life without you, and I can also miss you so terribly I want to be with you. The 2 existing things are coming to a head. 

Last weekend (as you probably know because Gan Eden surely got more crowded) a flash flood went through a river in Texas, where a lot of summer camps were located. The impact was deadly with an entire bunk of 8/9 year old girls and their counselors swept away; some of their bodies still have yet to be located. While the news of the reality of that situation was spreading across the US, your sisters were participating in a camp marathon where they chose to run in honor of you. Again 2 truths existing together colliding in my heart and head. 

Any loss of a child sits heavy beyond belief in my core. I know what these parents are feeling, the panic, absence, anger, confusion, intense pain, all with the added challenge that those who have never experience their child's death are saying how they are heartbroken (and while that may be true, they have no idea). They get to wake up to their children. They have them still, here. They are heartbroken at the potential of their loss, but they are unable to truly grasp the new reality of these newly bereaved parents. The ones I will soon see popping up in the online bereaved mom/parent support groups. The ones who now know the pain of everything they have always been subconsciously afraid of experiencing. 

The black hole of grief has opened up and swallowed me. I dislike this hole, despite the fact that my therapist would tell me (and after 5 years I know) that 2 things can exist, I can sit in the hole, I can give the grief time to sit with me, AND I can climb out of the hole. (For the record, I prefer to stay out of the hole and not even entertain it, because as your brother Tzvi would say, "why would I want to think about it when it's too painful") After 5 years I have almost mastered the ability of skipping over the holes, or so I have thought. Because always, when I think I have, and it has been a decent amount of time since the last "oops I feel into the hole I was avoiding moment", I inevitably find myself back at the bottom of the Alice in Wonderland hole. I guess maybe I believe my therapist a bit more about 2 things being able to exist. I can sit here in this horrible pitch-black hole filled with your absence and excruciating pain, AND I know that I will be able to survive the depths of what I have fallen into. 

I just wish these 2 things didn't have to co-exist.

 

Five years

Dear Sonzee, 

It officially happened. You have been absent from our physical presence for more than 5 years. I still cannot wrap my head around this. It seems impossible, yet at the same time it makes perfect sense. After all, so much has happened since you left us. There is truth to the whole concept of life stands still after your child dies, but it seems to only affect the parents, because for everyone else, life just continues. There was a definite divide of life before your death and life since. Life since seems to go by at the speed of light but yet in a slow motion form. It really doesn't make sense when I try to assign the motion words. Maybe if you could imagine the blurred images of a slow motion movie but the background is going a million miles a minute with streaks of light. 

Somehow we ended up 5 years post your death. I just cannot comprehend it. I thought I had this whole grief thing figured out somewhere between year 3-4, but Mrs. Penny reassured me after my last mini break down that that won't even come into the discussion until maybe year 8. Life wiithout you has certainly changed, but it is not any easier. I have just managed to figure out how (althought sometimes I doubt it) to wake up every day and plaster a happy smile across my face and act like I am just the jolliest human around. I probably fool 90% of the people I come in contact with that my life is perfect. That I am lucky, because I have 2 boys and 2 girls. That we are fortunate because we can afford to have our kids in all of these extracurricular activities. That aba and I have this perfect marriage that didn't almost fall apart because of having a child with complex needs who physically up and left us. That we get to travel and take amazing family pictures. But, anyone who actually knows us knows that all of these statements couldn't be further from the truth, but 5 years post your death and we have a certain rhythm that makes us look like "we've got this" (we don't).

Year 5 brought less people (thankfully) sending the once a year text saying they were thinking about me. In fact, the same people who reached out to me today reach out to me constantly through the year. It makes me feel less angry to be honest. Morah Zupnick texted me, "Sending you lots of love and protection from the stupid idiots who are going to text you when they haven't in a year". Maybe year 5 finally has weeded those people out. The ones who I know mean well, but yet frustrate me because why only think about me today? Why not realize I am feeling the same horrific pain and loss during every. other. single, day. of. the. damn. year????? Today is just an in our face reminder of the obvious fact that you are physically missing from our lives. Whether today happened or not we would still feel your absence, and we do. A LOT. The same will hold true for Thursday when we have to do this dreaded day again for the 8 of Shvat, but even worse because people will undoubtedly send me birthday wishes as well for my hebrew birthday (as if that's what I want to think about on that day!!!??). I can't say these thoughts directly to people, but hopefully they read this and feel less insulted at my stance? Hopefully they can appreciate the mixture of emotions that I struggle with on the daily. The ones where I put my feelings aside to make others feel less awkward or better about their wishful attempts of being sincere. I know, it's both an issme and a personal problem, but I am working on it.

This whole year 5 of your absence has finished out with a lot of change that I am not ready to share just yet, but it added a nice extra knife twist to your absence. It no doubt came from you, but it isn't 100% easy for me to accept just yet, but like all else, in time it will be. 

I hope you like all of your new rocks and the new setup of your stepping stones. Hard to even fathom that next week you will be turning ten. I am working on your present currently and I hope you like all of the changes and organizing I have done with your space. You are so very missed baby girl. I know you visited Nurse paige, and if you are ever so inclined, I'd love to have a glimpse of your new life. Or you could just let me know a little about it, like who your friends are, any drama you have experienced, the milestones you have achieved. I would take whatever it is you could share with me. 

But until then and until next time. 

I love you baby girl!

Love always, 

Ema

Sonzee "turns" 9

Dear Sonzee, 

The first sentence that comes into my mind is, I can't believe today (would've, could've, should've) been your 9th birthday. That is how most of my current thoughts start when it comes to you because really, I can't believe how much time has passed since you were born and since you have died. This was the 5th birthday we celebrated without you here. The last age you were was 4. I have so many unanswered questions about who you even are. It is difficult to honor someone when you don't know them, and it is even doubly hard when they were someone you once knew better than yourself. I still have to ask myself, how is this even real?

Today I woke up and started my day looking at February 11 in 2015, 2016, 2017, 2018, and 2019. I skipped 2019, 2020, 2021, 2022, and 2023. I came across a not-at-the-forefront-of-my-mind gem that was aba feeding you frosting from 2 cupcakes for you to indicate your preference. That 2nd birthday of yours was miserable. You cried in 100% of the pictures taken, and babysitter Paige did a family shoot for us with our cute matching outfits. You really could have cared less, and that you did. You clearly were bothered by the seizures and pain. 

It is funny, how aba reminded me how much I hated your birthdays during your life. I can promise, I hate them even more now in your death. There was just something so painful about reliving your birth and those first few weeks afterward every year while watching you suffer and miss every age-appropriate milestone. And now, well now you miss everything. I, however, do not miss watching you suffer, but I do miss not knowing the little girl you would be. Let's be honest though, it was a challenge to know who you were when you were alive too. It's not ideal either way.

Noam, Tzviki, aba, and I went to your grave and gave you your birthday rocks. Your sisters didn't want to come. I was torn in my mind over whether I should force them to or not. On the one hand, if they don't want to go maybe it's because it makes them sad, or maybe their grief is indicating they want to honor you a different way. On the other hand, what if it is just them wanting to put something else above you, and then I feel that isn't fair. I am all for variations in grieving, but it hurts my heart too much to have them just pretend today isn't a family day or that it isn't an important day. After visiting you we felt we should go to Starbucks and I bought myself a pretty tumbler as "your gift". Then we drove all around Scottsdale picking up your siblings from their previous night's sleepovers.

We were supposed to go watch a show, but it was canceled last minute, so I spent the afternoon getting addresses together for Tzvi's bar mitzvah save the date invitation that have to go out (once they come, after I fix the incorrect date (and aba thinks I have it all together, HA!)) We then went to bubbies and pop-pop made pizza's and bubbie made pasta and a wonderful red birthday cake for you with the perfect bear center! I couldn't have asked for a better way to celebrate your birthday, well except if you were here. 

Anyway baby girl. I hope wherever you are everyone made you feel special and that you had a spectacular day. I have no idea what I will have to plan to honor you turning double digits, so it's a good thing I have 365 days to figure that out. 

I love you and miss you beyond words!

Until next time. 

Love always,

Ema

Four years

Dear Sonzee, 

Today at 1:08pm marked 4 years since you left this world. So much has happened in that amount of time, but it doesn't really involve much healing of the hole in my heart. Shifts of emotions sure, and moving forward in numerous ways have occurred, but there is still no sense of peace in your absence. I have however become a master of masking emotions and to quote the Book of Mormon, I can "turn it off, like a light switch, just go click".  I am not sure it counts as moving forward in the intended sense, but it counts as something I suppose?

Four years ago today I gave you one last kiss and carried you out of the house for the last time. I laid you on a gurney and was shocked at how cold it was outside for a February day. I hadn't been outside in weeks and was caught off guard. I flinched at the chill and grabbed a blanket so you wouldn't be cold, and then considered how insane that must have sounded to others. As if temperature mattered to your body any longer. I couldn't stop the mothering though, it was bad enough I was sending you by yourself in the back of a hearse, the least I could do was give you a blanket to ensure you were warm. 

Today I looked at the clock at 1:34 and noted to myself what I was doing at this time 4 years ago. Pacing around a counter, organizing things around the house, feeling confused and unsure of what I was supposed to be doing, while Nurse Paige sat on the couch writing notes. It didn't make sense to me that life was going on around me, just like today it didn't make sense we had just gone back to Morah Zupnick's house for lunch after celebrating a bar mitzvah. I wasn't in the mood for celebrating today, but I sucked it up and played the part. Few people knew what today is anyway, and apparently, because it isn't your yahrtzeit it doesn't count as the day you died (insert me rolling my eyes and wondering why it is I am an observant Jew sometimes). 

It wasn't until this year that I started to feel the whole grief should expire concept from other people. It seems as if life is always moving on around me and there isn't time to wallow in my grief either. I feel torn between focusing on you being gone and focusing on our current day-to-day family life. In the semi-quoted words by Nora McInery, "I want to give you and your memory my best and I want to give my living family my best, and sometimes I think my best is gone and what is left is whomever I am now". Whomever that actually is I have no idea. I wish I did, but I am still lost, even four years later. I just excel at acting like the new me has been found. 

Bubbie and Pop Pop brought Max over for some doggy therapy tonight. It was perfect for my after-shower tears that I had managed to suppress all day long. Now I have some hot tea and a new set of tears to help finish off the night. Your twin girl (who always manages to say and do the right things at the right times) told me that she is sorry that you died and how she notices in my face when I am thinking of you and she is thinking of you too and she wanted me to know that she does miss you a lot. It really was at a perfect time because it was right after I finished writing the sentence above about grief expiring and my next thought was how sometimes it feels like I am the only one who still grieves you. I know people grieve you, and I know they do it their way, and that is fine, but the further away the time has gotten, the more alone the grief feels. I don't like that part of the journey. I don't like how time since death somehow translates to others that it is less hurt and less pain. Or maybe it is just people just don't think it hurts as much? Maybe they think that time has healed the wound? I don't know, but whatever it is, I wish it wasn't. I wish people offered the same check-ins and assistance they did right after you died because honestly, every grieving set of parents still needs support even (yes shockingly) years later. 

In a week and 1 day, you will be turning 9 in heaven. I don't know how to even comprehend you as a 9-year-old when I last saw you as a 4-year-old. From preschool to 3rd grade, that seems unreal(well I guess in a sense it isn't real). I wonder what you would look like now and if your baby face would be gone. Would you have lost teeth? How many windows would there be looking into your mouth? Would your eyes have changed officially to grey and started their journey to green like your older sisters and how your brothers are starting to? 

What have you been up to over this year? Have you made new friends? Do you have a best friend? What are your favorite things to do? Do you get to swim? Do you see Saba and Coach Ed? The one question I really want to know is, When will you feel I am ready to ever see you? 

I am sorry my letters have been lacking over this past year. It seems to be my way of avoiding the reality of your death and absence and on top of that excuse, it is exhausting to grieve.  I am already exhausted from working and having an active life to expend any additional amount of energy on focusing on you not being here just isn't something I am capable of doing daily. I wish I could be, but I just can't. I am sorry. 

I miss you more than words could ever explain. I wish you were here. I wish you were born healthy and able to still be here with our family physically. 

I love you!

Love always and forever.

Until next time. 

Ema

8 Shvat/January 18, 2024

Dear Sonzee,

I have spent the last year trying to figure out how to celebrate your sisters 14th birthday and honor your Hebrew death date anniversary. The timer has ran out and I’m still stuck. I know how the fake the smiles and be physically present at your grave in the morning while singing happy birthday over a cake at dinner, but the honest truth and reality is that it doesn’t make sense. There is that saying that you can be a jack of all trades and master of none; that about sums it up. 

How? Why? I don’t understand. 

Is there a right or wrong way to do either? Do you get the “shaft” because you aren’t physically here? Is that fair? Will you “not know?” Is that even a reason that makes a difference? I’ll know. Do I pretend that all that today is, is the day your oldest sister was born? Does that really give justice to your life and death? Do I honor you another day? I mean inevitably I will. If it were up to me I’d pretend today wasn’t your yahrzeit, but in the Jewish faith, today is the actual day that matters. Lucky me, I get to do this all again in just a few more weeks.

Either way today sucks.  Today on the secular calendar in 2020 you spiked a fever. A fever that didn’t indicate anything other than your organs were beginning to fail and your life was soon to be over. It is a fact that tainted your oldest sister’s milestone 10th birthday. I was honestly frustrated with you, or rather the situation. It was obviously out of your control, but my emotions are hardly ever rational.  

I suppose it is completely fitting that you and your sister were known as “twin girls”. What other people could be as intertwined to represent the cycle of life than you both. To have your souls and spirits tied together on so many future dates that only twins would experience together. 

I would ask you to visit your sister to wish her a happy birthday, but I am sure you have already. I’m sure I’m still the only one who has yet to have a visit from you over the last 4 years. My body still feels a tremendous void with your absence. 

I will save my other thoughts for the Feb 3 date because it gives me a bit more time to “pretend” we aren’t at 4 years without you yet.

Today, on your Hebrew deathaversary I will continue to pray that you are at peace and wish that you have been experiencing everything you weren’t able to while physically here with me. I will give you some more beautifully painted rocks and visit you with everyone who is closest to our family and you. I will head to work and surround myself with children who have so many of your characteristics and keep you in my life in a completely different way than anyone or thing could. I will wipe the tears from my eyes and go on with my day with a smile for your sister and gratitude that today 14 years ago I was afforded the opportunity to become a mother to such a resilient and amazing 5lb 5ounce little girl who never had a choice over the circumstance of her childhood. I will thank hashem for using our family for the benefits only he sees, while continuing to ask you for your Sonzee bear strength to continue putting one foot in front of the other while I continue on I struggle through life after you. 

I love you little bear! 

Love always and forever,

Ema 

202 weeks and 1 day

Dear Sonzee, 

It has been 5 Mondays and 1 day since my last letter to you. It has been 202 weeks and 1 day since you were last on this earth. I feel like in the last 14 weeks so much of my coping with grief has changed maybe that is why there have been fewer letters? If I am honest, that isn't entirely true, it also has to do with me working full time and your siblings' extracurricular schedules. There remains not enough time in the day. I still wonder how I managed everyone and you. I mean I know it was in huge thanks to Nurse Paige. We never would have been able to do anything of what we did without her. I miss her a lot too.

Over the last 5 weeks and 1 day I have been immersed in work and activities which has allowed me to compartmentalize my grief. In a week we will be on our first actual family vacation that doesn't involve hockey or gymnastics, so I am hoping and planning to continue pushing off the wallowing and self-pity until our return. Then the next 6ish weeks will be left to being extra depressed over all the dates of yours to come. 

This year you planned a whopper of having your yahrtzeit fall on Laeya's 14th English birthday and my 40th Hebrew birthday. I give you a standing ovation for that talent. You always knew how to blend the positive and negative and merge happy and sad together. Well done little bear. In 13 days we will start another year without you. They have all been horrible, but this year to come will eventually turn the clock to your death being longer than your life. I am not ready for that. So I will sip my wine, swallow my tears, and smack back on my happy face until I am sort of ready to deal with that thought because I like avoidance far better.

In other news, Aba got a new car this week! He is very excited. I wanted it to be red for you, but we went with a pretty blue. I am going to get your name on the license plate, so this way you will have a place in the car. Maybe SONZBR or SNZBEAR? I have to think about it. Anyway little bear. I miss you so much. I still wish you would come and visit me. 202 weeks and 1 day is long enough already! Come see me in my dreams!

Love you!

Until next time. 

Love always, 

Ema

Ride the waves. Crash. Repeat

Dear Sonzee, 

It has been 9 Mondays since I last wrote you a letter, but just 5 Mondays since I last wrote a blog. Maybe I should clarify, since I last wrote a blog out of my mind, one that I felt I needed to get out of my mind or the words would could continue to crash around all muddled. I suppose it is only fitting for the situation I find myself in. 

For weeks I have been experiencing all sorts of new "life after you" situations that didn't seem to phase me. Maybe it was less that they didn't phase me, but more that I didn't quite know how to handle them? I felt that maybe this was just part of the whole time is passing me by concept. Maybe, just maybe, this is what everyone refers to as "moving forward". Dare I say that it felt almost like hope. That alone should have told me better. Life was moving forward at lightning speed, you were coming along for the ride right along with me, I felt it. I knew it. I wrote to you so many times in my mind, but in the end, I didn't need to get the words out for anyone else, they were just there, for me, for you. I felt like that was progress, maybe it still is? was?

Your siblings have kept us beyond active in this everyday hustle and bustle of the life you left behind. I enjoy the speed because it makes time easier to handle. I have found myself talking about you to anyone who will listen, and maybe even some who wish I wouldn't. I have thought to myself how much easier the talking about you part has been during year 3+. I shared that and some other positives with Corrinne's mom recently. She too is living in a universe unlike the one she and I ever knew together. Maybe we are both avoiding the alternative reality? Maybe it is the only way to cope? Either way, it seemed celebratory.

Halloween at FBC came and went, your sister's first gymnastics season is about to be in the books, with the remnants of medals and new equipment in our house to prepare for her next one. Your oldest brother has had a few tournaments come and go, I am almost finished needlepointing Tzviki's tallis bag, and our house is experiencing cold/flu/virus "PCH restriction" season with little concern except for how it might affect the outcome of your siblings and their sporting events. An inner chuckle and nod to this "life after you" (still feels new reality) is what I offer, but really a solid 10 minutes of hysterical laughter would probably be better suited.  In the words of Cher from Clueless, "As if".  

I took pumpkins home from school a few weeks ago for your siblings to decorate, one for each of us. It took a conversation with Meena who was arguing over Noam painting two for me to realize that I brought home only 6. When I said the words, "I brought one home for each of us, I brought 6 home", I immediately realized the mistake. Except it wasn't a mistake and I wasn't even upset. I didn't know how to process any of it. The realization of what I did, the fact that it felt okay. How was I supposed to feel? I guess as I did? You wouldn't have been able to decorate the damn pumpkin anyway. I am sure whatever one you have by your house in heaven is far more glamorous. I felt it was another moment on this journey where I was moving forward. I didn't need the pumpkin as a representation of you. I didn't need to stare at a pumpkin that you couldn't and wouldn't decorate. I didn't need to have a pumpkin to somehow subconsciously attempt to make you be here, to be real. It was a step, I think? 

Has everything been a step these last two months? Was any progress made? Or, was it simply that I have gotten so good at my ability to compartmentalize and avoid that I managed to ride the waves for 9 complete weeks feeling like I was invincible? None of my avoidance or compartmentalizing makes the pain in my heart any less, it just makes it so much easier to pretend that it is the case. The insane part is that I even fooled myself this time. I really felt like things were okay. Maybe they were? Maybe they are? 

Most of the things I have come to do since you physically left me were things I did to cope with your absence. Sitting by your grave for hours, writing you letters, painting rocks, buying you keychains for states you won't ever go to, buying bears or items that are red, posting pictures, telling stories, every single related to you, it was and is just for me. I understand that. That is why it makes so much sense it is always changing.  I know deep down things were and are actually okay. It is all part of the journey. It won't make sense despite my best efforts because life after your death hardly does on its own. It's why as much as it hurts to ride the waves, crash, and repeat, it is what I will continue to do over and over again, for me to deal, with a life without you. 

Until next time baby girl. 

Love always and forever, 

Ema

4 weeks

Dear Sonzee, 

It has been 4 weeks since I last wrote you a letter. I am honestly a bit surprised because it feels like I missed so many more than just 4. Weeks 186, 187, and 188. Technically I could get away with writing you one during week 189 because that started just yesterday. 

These last 4 weeks have been avoided on purpose. I am entering the time of year where I'd rather not deal with your absence. Truth be told even though I don't send you the letters that write themselves in my mind, it is impossible to avoid your absence.  That is felt more and more every single day, but when I sit down to put my words onto this electronic paper, the tears fill my eyes and the weight on my chest becomes heavier. The breaths are hard to come by and it feels like someone has placed a 30-pound weight (well honestly it could even be 5lbs because we know I am not the strongest person) on my chest. The pain becomes difficult to ignore. It is the same pain that is always present, but I have mastered pushing it down and not feeling it. That is a benefit of it being 3.5 years since you physically left. 

The last 4 weeks included another CDKL5 child dying. A fact that I have tried hard to also ignore, because knowing another parent is on this journey makes me sick to my core. Me transporting back to the beginning is unavoidable when a CDKL5 death happens, so the avoidance of everything becomes two-fold.  

Today there was a meeting at work and the mom and I have followed our children's online journeys for some time now, so I said how it was nice to finally meet in person. She replied that she stalks me to read my journals, and I mentioned how I haven't written one in a while. I felt like I needed to share an excuse. I doubt she needed one. I am sure it was just for me to justify my actions aloud. It isn't an excuse per say either, it is more of facts. An excuse would be me saying that I don't have the time, or that your siblings have me busy, or work, or an endless list of reasons; because the reality is that I am making a conscious choice to not write to you. A sad reality, but the reality of life after your death, because it is easier to avoid than to confront the grief.

Over these last 4 weeks I did manage to visit your grave and clean it up while placing new rocks and items for you. I have recently come to understand that the grave really is meant for the grieving and not for the deceased. I used to go for hours when you first died to feel closer to you, and now I know that you aren't ever far from me so I dont need to go to feel your presence or to be a good mom. I know you are with me and I know that if you need me you will find a way to make that clear to me. Growth? I think yes. Painful? Yes because it means it's been that much time that has passed for me to learn another #lifeafterSonzee fact. 

Another #lifeafterSonzee fact, September begins my deeper grief depression. It signifies the start of the end of your life, or rather when I started to search for answers I would never find. It was the season I started to document all of your changes to build my case to prove something wasn't right, to attempt to prove that my gut was right and that something was going wrong inside of you. The easy thing to do would be to remind myself that it wouldn't matter if someone agreed or if I proved my gut earlier; but my body and heart wouldn't listen to my mind in any case, even if I told myself that until I was blue in the face. This is just how it is; this is just how it will be, and that is okay. This is just how it has to be.

Over the last 4 weeks I have been asked if I am still sad over your death. I have been asked if I am not happy knowing that you are peace. Yes, to it all. I am and will forever be sad over your death, and the only solace is that you are at peace, but it won't change the fact that children aren't supposed to die before their parents, healthy or not. That isn't how life is supposed to work. I will give g-d an out on the whole CDKL5 diagnosis and special needs, but I can't accept the whole death part. That part is pretty much unforgiveable, despite the whole G-d has a plan I don't know concept. There is no plan involving your death that I will ever be understanding of, even if in the end it makes any sort of sense. 

The last 4 weeks had one of your siblings ask who was going to make your bedroom when Mashiach (Mesiah) comes, one of your siblings tell me that a bridge was built and gotten over in regard to your death (and then eventually corrected to admit that wasn't the case), and a sibling ask to read their Sonzee and Me book to sleep at night. I won't say which siblings or if they were all different, but everyone is on their own #lifeafterSonzee journey, and I just get to be there to support them without my feelings interfering. I don't know what it is like to lose a sibling, and I make that very clear to them. I also tell them whatever they feel is ok and right. 

The last 4 weeks have had me spend more time at FBC. I tend to keep you a secret while I work. Not because of another reason besides that it isn't necessary to share. However, there are times when I feel it helps a parent or a nurse understand that I have the best intentions of any possible person when it comes to assisting with communication because I have been a parent and caregiver to a child with significant needs who also sent their child to school with a 1:1 nurse. It sometimes serves a significant purpose to share about your life and death. Thank you for everything you taught me and continued to teach me.

Anyway Babygirl. I know this doesn't make up for the last 4 weeks, but I hope you can forgive me for being in the place I am in terms of grieving your loss. I miss you beyond words. My heart wishes beyond words you'd come visit me in my dreams. 

Until next time.

Love always, 

Ema

185 weeks

Dear Sonzee, 

We are back in Phoenix after our typical summer in New York. Summer hasn't been the same since you left.  This summer I worked virtually for a significant part of it, and it was only while I was driving back home that it dawned on me that it was my subconscious attempt to avoid you not being there physically with me. With Noam at camp all day and your siblings at sleepaway, it would have been just you and I taking on some crazy adventures...I don't really care to do anything without you there, not when that was our escape (Or attempt at one at least).

I drove 3 days straight with 2 nights in hotels to get home in record time. It was exhausting, but I just wanted to be home. The worst part about summer is the drive home. Noam and I dropped your sisters in Memphis to stay at friends for 5 days. They flew home yesterday, for the first time on flights by themselves. Laeya was old enough to not need to be an unaccompanied minor, and because Meena was between 8-12, she could go with Laeya. It worked out beautifully. I set them up with my Starbucks app and airline app and they were good to go.

Saturday night Aba and I went to a murder mystery dinner party. It was such a great time with great people. We were celebrating 2 friends' birthdays and it was great fun. I won the "Merry Maid" award (because I was a suspect as a maid). I also happened to win "dead last" in the guess for the murderer. The best part was how confident I was in that guess. My biggest fears of the night were having a character that required an accent and losing....both happened, and I handled it by laughing. (It didn't hurt that I had some yummy sangria).

I went to work Friday and got a lot done, but there never seems to be enough hours in the day when it comes to getting work completed. At least it was productive and it's always nice to be in the office with everyone. Thank you for bringing FBC into my life.

Anyway little girl, I love you!  Have fun and be safe.

Until next time.

Love always, 

Ema

184 weeks

Dear Sonzee, 

This week was our last week in NY. It started with Meena and Noam being in camp, with Tzvi hanging out at home, and ended with Laeya and aba coming back from their 2-week trip to Israel and France. I have been working a lot supervising via TEAMS and working on ieps that are upcoming. The weirdest thing is how NY won't start school until a month after Phoenix has. It's really surreal to watch kids go to day camp, while you are working on a computer while kids are attending school.

The days were feeling crazy while I worked and aba was away with Laeya. I joke, but it must be nice to be able to just travel for 2 weeks while the other parent is holding down the fort and working. Your siblings and I did have a good time, but Tzvi has pretty much lost his privileges of being able to stay home after camp. He will be in sleep-away camp or day camp, but not lounge around "camp".

Work has been keeping me busy and it feels challenging to keep up with everything, but it is working out. I am so thankful that I am allowed to work in this manner, so I will do what I can to make it work, but it isn't easy.  Sometimes I wish I was physically in the building to work on an AAC device or to see the kiddos in person, and not via a computer.

I went for the first time in years to the Emunah fundraising event that Ms. Malka always co-chairs. I ended up buying way to much as usual, and this is why I should not attend in the future. 

Anyway baby girl.

I love and miss you!

Until next time.

Love always, 

Ema

3 years 6 months 5 hours and 27 minutes (AZ time)

Dear Sonzee,

 

I am sitting here in the VV pool area for night swim with 2 of your siblings. The other one is galavanting around Israel (and soon France) with your father. Uncle and Hay-Hay are back at the house while Isla fights going to sleep. There have been so many times I’ve wondered how you would fit into this equation. Would we still be coming to VV? I tell myself yes, we were always encouraged to leave the hectic chaos of hospital and sickness life to give you and your siblings the best quality of life, but I wonder if that could have continued as you got older. Would you have finally grown? Would you have become mobile and required more supervision than we could offer you here? Would you have eventually been accepted into camp HASC??? What would our lives have looked like over the last 3.5 years? What would they look like now?

I struggle to comprehend life with you here still. I don’t know if it’s for any other reason besides it being just too difficult. I still, after 3.5 years, don’t like to accept the pain of grief and your death. I still, after all of this time still don’t like to think of you not here with us. It still takes my breath away. It still makes me panic. It still is just too hard. I know, I know, it is likely to continue. I get that. Well, I try at least. I get it about as much as I understand why you had a mutation on your CDKL5 gene, and why you were so affected by your mutation. I get it about as well as I understood AP physics…(for those who know me, that should explain my understanding). 

Life continues to move on, and so so quickly. I watch your brothers play together, and it makes me smile that they have each other. Their age difference is starting to become less apparent as they play around. Where would you have fit? The thought makes me broken, almost as broken as I am now, but that wasn’t even possible to comprehend while you were alive. I mean in ways it was as I expected, in others, nowhere near. 

Your siblings continue to grow up. You won’t. You don’t. You haven’t. You’re still stuck in my mind as a 4 year old. I still hate that we celebrated you turning 5. You never got to in real life, just the pretend life we tried to have for you. Your siblings continue to drive me crazy and each other. You hardly did that. Your siblings more often than not act as if their lives are normal.  I wonder how much of that is a facade and how much is real. I am afraid to know the answer to either of those questioning thoughts. 

I have kept myself busy this summer working. Something I didn’t and haven’t done any other summer. There’s a part of me I think doing it to ignore your absence since everyone is at camp. There is a part of me doing it to surround myself as much as possible in a world you once encompassed. It’s a double edged sword though. I love working in a place you spent a good portion of your life. I sometimes HATE when your name pops up in directories when I least expect it. I remain torn on if that’s a message from you or stupidity from the systems that for some reason haven’t erased you from them. But one day I am sure they will and I wonder if I’ll notice and it’ll hurt me more, or if I won’t even notice? Which will be better?

There is so much more we have been able to do over the last 3.5 years since you left us. A part of me wonders if you left us for that purpose? Did you feel like you were holding us back? I can’t say you didn’t, but I will say I didn’t mind. I mean there were some hospitalizations that were untimely, and you knew how to steal attention from your siblings. There were definitely other ways you could have gotten aba and i to spend alone time with you, but you preferred it to involve lots of tubing and medical interventions. I don’t miss those. I do miss the people. I miss being around people who got that life, because so few get the one I’m living now. That’s been a challenge. 

I feel like you are lucky because minus my fear that you aren’t healed and that you miss us, I know you are amongst some amazing souls. I am dreading the distance from your death getting longer than your life, but I know that amount of time will be here sooner than I’d like. How will it be that in just 6 months it will have been 4 years from your death and you were 4 when you died. I will get smacked with that timeline and then your 10th birthday all within a week of one another. 

I wish 3.5 years ago I would have known that I would feel essentially the same but yet some times worse. I wish the peace I felt 3.5 years ago was still surrounding me knowing and believing you are in a better place. I wish the comfort I felt at you no longer suffering would continue to bring me comfort now…it doesn’t, although I try to argue with myself that it does. There is little I can tell myself of your death that brings me calmness. I am happy your siblings get to live a more consistent life and that they get to have more experiences, but I’m not sure it is worth the expense of your life? I could again justify it to be the case…but I think they were living fine lives with you here.

Anyway baby girl. I miss you beyond words. Your loss is still felt by so many and your ema is still broken without you. There is still a huge void in our lives in case you ever doubt that and I pray that you really are flying freely and getting to do everything your earthly body didn’t allow. 

If you visit, please don’t bring any water, we are all good with the houses we own…but I’d love to eventually see you in my dreams because 3.5 years and 5 hours and 27 minutes has been long enough. 

Until next time.

Love always,

Ema   

182 weeks and 1 day

Dear Sonzee, 

Another week has passed, and in 2 days it will have been 3.5 years.  I traveled to Phoenix this past week for back-to-school training at FBC. I really enjoyed being back in the building. Amber and I saw your heart canvas on the floor and we both nearly lost our marbles. Joy (she is basically the new Jaime) assured us it is going to be a new focal point on a wall with student artwork, or at least off the floor. It was accidentally knocked off the wall and then a janitor threw it out causing Joy to dumpster dive until she found it. (Luckily, because Amber and I would have been broken). This year I am really excited about what is in store and cannot wait to get back to school. 

When I wasn't at work or being fed by Morah Alyssa and bubbie, I was doing projects around the house that aba doesn't know about and I am excited to see how long it takes for him to notice. I flew back to NY on Thursday night via the red-eye. Aba and Laeya left for Israel before I got back and they are going to France before they come home, she is one lucky girl that sister of yours. 

Meena had a rough start back to VV day camp after coming back from sleep away. Tzvi is enjoying lounging around. We ended up switching their phones from Troomi to Bark and everyone seems to be a bit happier. 

On Sunday we did Tzvi's annual birthday trip to the American Dream Mall and the water park. Uncle and I splurged on the skybox and it was a great day of water park fun and food. We left with your baby cousin Isla in toe, and she is camping out with us until the end of this week.

Anyway baby girl. I miss you!

Until next time.

Love always, 

Ema

181 weeks

Hey Sonzee bear!

The Zupnick's are going back to Phoenix tomorrow. They have been so fun to share the house with. We have spent a lot of time eating, as Morah Zupnick makes sure to prepare food all the time. She is a fantastic cook and is doing no favors to my already expanding waistline. 

This last week we have done some more clothing shopping and I have been working virtually. 

The weather has been on and off raining and hot due to humidity. I wonder how it is for you? 

It seems that your siblings are having fun at their camps and Noam is having fun at home. He has been sharing his space with Nosson and it has been really funny watching them interact. They are acting like brothers now and it is pretty comical, including the fighting, which can get physical (and hysterical) to watch. 

VV continues to not be the same without you, but I am getting along the best I can. Things are just different.

Anyway, babygirl. Stay safe!  I love you!

Until next time.

Love always, 

Ema

180 weeks and 1 day

Dear Sonzee, 

Today is 180 weeks and 1 day since I last saw you. I calculated the numbers and it equals 3 years, 5 months, and 15 days, or 41 months and 15 days, or 1261 actual days. Time continues to pass, and life continues to go on. I feel so much further from you, yet I know spiritually you are close by. It isn't the same, but it cushions the blow a bit. It is like putting on some sort of safety equipment and then getting hit. Some protection is offered, but a hit still hurts, and the body still bruises. That is about where I am at this point in the journey.

There are still words I cannot find this far into the journey. There is still difficulty expressing the thoughts and feelings of your loss. This last week there have been days when your physical presence felt like another lifetime. So much continues to happen since you left.  All your siblings finished their 3rd week of camp and the Zupnick's headed home after being here for the last two weeks. It was such a fun time having them here, well for the adults, Noam and Nosson acted like brothers (which was really funny).

This last week we went to the waterpark at American Dream. I saw someone pushing a water wheelchair. I never noticed they had that the last few times we went. I wonder if by now you would have learned how to sit and could have sat in it without support or a seat belt. I wonder if you would have liked to be in the wave pool? I know the slides wouldn't have been your preference at all, but the hot tubs I know you would have loved.

We did some shopping this last week and ate a lot of yummy food. Your older brother is actually loving sleepaway camp this year. Your older sisters are smiling and seem happy at theirs. Meena hurt her wrist, but thankfully it isn't broken. The only other contact from your sisters is to send more money or specific items. Your brother got a pie in the face on his Hebrew birthday and is enjoying the sports and friends. He is trying to get us to get him an iPhone, but I think Aba and I are figuring out alternatives to that idea. Noam has been watching Monster's Inc on repeat as usual again this summer. He got new shoes this week from Bubby, along with a toy since she felt he wasn't being spoiled enough like your other siblings.

I worked last week remotely, I am so thankful I have the ability to do that so we can still enjoy summer here in NY. I wish you were here, but then I am reminded of your awful last summer here and the thought makes me exhausted. There has been a lot going on in my mind, but I will save it for another post. 

Hope you have a great week ahead little bear! Love you lots!

Until next time.

Love always,

Ema

179 weeks

Dear Sonzee, 

This last week the Zupnick's came to VV and are staying with us. Temima was dropped off at Camp Simcha and Nosson has been going to camp with Noam. Baby Meir and Baby Isla got to hang out on the 4th of July and it has been so fun having everyone in the house. We had a great time with uncle, Hay-Hay, and Isla visiting over the 4th. 

We have gone to Rita's twice now, and Noam is loving his cotton candy custard with fruity pebbles. There are some awesome new stores in Monticello this year for clothing. The girls and I have been getting our shopping in. It isn't the same without you here to store all the bags under, or have you as our shopping companion that is for sure.

Everyone seems to be adjusting to camp well. No bad news from Tzvi and the reports have been positive. Your sisters have written some letters, Meena wasn't thrilled over her bunk, but she is adjusting and appears to be having a great time based on the pictures she has been tagged in.

I had off of work this week because of the 4th of July, and that was nice. Aba finally put together the rockets that Tzvi won during a raffle years ago. We went to the baseball field and launched them and it was really awesome. We were all surprised at how far they went into the sky. It was a rainy day yesterday, so we also went swimming indoors.

The fire works during the 4th of July were insane as they were launched literally in our backyard by the lake. I was a scaredy cat and watched from indoors because they were so loud watching from the deck.  This week has been filled with friends and fun. Wish you could be here!

Until next time. 

Love you and miss you!

-Ema

177 weeks

Dear Sonzee, 

This week finished our first full week in New York, and Laeya, Noam, and my 2nd week away. Aba, Tzviki, and Meena came in yesterday, but not after a diverted flight that ended up making their travel over 9 hours. We finally got back up to VV around midnight and went to sleep around 2:30 after everyone was finally settled. 

This week I worked about 20 hours and Laeya and Noam hung around the house and played on their electronics or scootered. Most people were not yet up at VV because school didn't end until Thursday. Morah Lakie and her family arrived on Wednesday night, so I help situate them, we ate dinner together, and then they took a bit to get acclimated. 

Friday night we had Seri's family and the Blech's over for shabbas dinner, and then shabbas day we went to the Blech's house and hung out. We did lots of walking and relaxing. 

Anyway my love. 

Until next time. 

Love always, 

Ema

Summer 2023

Dear Sonzee,

We finished our drive to Uncle's on Friday and spent shabbas in New Jersey. Yesterday we officially arrived home for summer. The one you never got to see, but the one that would have worked so much better for our family when you were here. (Minus the staircase up, but nothing is perfect). Today starts day 1 of summer. 

Summer is one of those sneak up on me quietly in a dark alley at midnight sort of experiences. (Or what I imagine that would feel like because I'd rather never be in that situation) The drive was filled with hours alone with my thoughts paired with songs that would take me back to either your life or death. Driving on the backroads of Oklahoma listening to Taylor Swift sing "Wildest dreams" took me back to your infancy and the blog post I wrote in September of 2015 as a guest blogger. I still have those dreams of what life could've been had it not been filled with what it was for you.

More songs continued to stream while your brother and sister were otherwise occupied by naps or playing with electronics. "From where you are" came on during day 2 of our drive and reminded me of its music video with cars driving down a long road. My mind drifted and this sadness cloud began to hover over me. Just a bit before I was so excited for summer, and to be back at VV, and then all of a sudden the cloud opened on me. 

Summers were for you and I. It was our time together, no nurse, your older siblings were in camp and Noam was just a baby. You were our shopping bag holder when Malka and I went to Woodbury Commons. You drove your car along Townhouse Road. You were a staple on our walks. VV isn't the same since you have been gone. The main blessing was relocating to the lake. The first summer without you in TH 49 was difficult. The lake is a place you haven't ever been. I don't see you on the floor or around the space. There are no blankets you ever laid on, I can't place you in any of the rooms. You exist only in my thoughts, which is both a blessing and a curse. This summer I will be working during the days virtually, which will help fill the void of your absence, but it makes what was once my break from reality, a stark reminder of what my current reality is. 

I am looking forward to this summer with excitement and a heavyweight within my chest of all the adventures you and I will miss out on together. I know you are still very much remembered by everyone here and your spirit definitely fills the air, but it doesn't change the fact that we are embarking on yet another summer without having to worry about your tubes being pulled out, allergies that show up on PCR tests, and needing to ensure we have your medical one form for when we inevitably had to the hospital runs. 

I know you will come to visit us with cool summer breezes, and I will be waiting on the porch with a cup of coffee in hand to enjoy them. Be safe and have a fun summer, my love. 

Until next time.

Love always, 

Ema

Week 176

Dear Sonzee, 

This week finished our first week of being away. We had a lot of fun driving to New York and staying at uncles for the weekend. This last week we managed to travel a new route since we were going to Uncle's and not upstate. We got to drive through West Virginia, which is beautiful, and I found you a red bear keychain to bring to you when I go back home. 

We drove through Arizona, New Mexico, the top of Texas, Oklahoma, Missouri, Indiana, Illinois, Ohio, Pennsylvania, West Virginia, New York, and New Jersey.  We stopped to stand in 3 states at once, and I signed your name on the wooden area. We also got to see a Stone hedge replica in Missouri, and a leaning water tower. Your brother and sister were good sports and mainly watched DVDs or played on their electronics. We had yummy food that bubbie planned for us to bring to eat in the hotels, and we even got to stay in a Homewood suites, which thrilled Noam because he is obsessed with those Louis the duck books that we got when we stayed there in 2019. 

We drove up to VV yesterday and unpacked the house. It is year #2 at the Lakehouse and I love it! So much room, such a beautiful view. 

I miss you lots!

Until next time.

Love always, 

Ema

Recap of weeks 174 and 175

Dear Sonzee, 

We just completed day 2 of our drive to New York. We went a similar route to the one we did with you back in 2017. We passed by one of the fun spots where we spray painted the cars that were sticking out of the ground and Noam asked if he had been there. I told him no, but you had. Then I thought to myself it might be unfair that I won't ever take him, but also it falls under my rules of never repeating things unless we really have to. So today led us to a playground right before we entered into Oklahoma, and the brittle leaning water tower. We did have 2 Starbuck's stops and 2 gas stops as well. 

Aba is at home with Meena and Tziki. Meena is going to gymnastics 4 days a week until she flies to NY for camp. She got her roundoff-back handspring-back tuck, and it is beautiful. I am in aw of her strength and abilities. She is just so talented. I still can't believe she started 2 years ago. Tzvi and aba got back from Florida last Wednesday, the day after Laeya and I got home from New York. They went to watch a Stanley cup final game for the Panthers. It was an incredible game, and the only one they won during the last series. Vegas went on to win the cup, but Tzvi will have that forever experience. 

Last week was spent mainly finishing up the packing for camp and our roadtrip. Your siblings finished school for summer officially on Friday. I have been virtually working here and there to answer emails as we rev up for ESY to start next week. I am looking forward to summer relaxing paired with working, but I do feel like it is going to make summer feel like it is flying by. 

Anyway my love. I wanted to just send a quick update on things. I have another letter writing itself in my mind that might have to wait until tomorrow to get on paper. 

Be safe, have fun, and I miss you!

Unitl next time. 

Love always, 

Ema

June 1 1:52am (173 weeks and 2.5 days 44 min)

Dear Sonzee, 

I haven't written you a weekly letter for the last 3 weeks. The intention was initially there, and then after Shaina died everything went out the window. It's been a while since I have gone back to this place. The dark whirlwind of grief hole. The one that makes it impossible for me to fall asleep at night. The one that keeps the tears only a blink away. The one where it feels like I left something behind, and that leaves an enormous weight on my chest. It is the place where I want to be a hermit and not be around many people and keep to myself. It makes me exhausted in the way of not wanting to do anything more than the basics of life. I have worked so hard to get passed this place and to where I was 3 weeks ago...but it took less than a second (literally) to erase it all. 

Work finished up for me last week right before Shavuot. It was a nice holiday, I went and said Yizkor for you. On the first day, there was some drama at the shul because of a suspicious box. It ended after the bomb squad had to give the green light for things to continue. We had a mini block party at the house. I was thankful I had made 4 pitchers of cold brew prior to the start of the holiday!

We celebrated Meena's birthday during the last 3 weeks as you know, she turned 10, 2 times an age you never got to be. Tzvi had hockey tryouts and made peewee silver with most of his friends from last season. It is sad one of Tzvi's friends is no longer on the team, I am upset that his mom won't be on the bleachers with me.  I know I will see her around, but it isn't the same.  

We did an impromptu street cleanup Monday. We had to get our 2nd one in asap since we were due already. I asked Aba Sunday if we should go (it was 7am), and he said he wanted to wait until Monday because he wasn't in the right mindset because it was hot because we would go earlier Monday. The only thing accomplished was the mindset because we went at 9am and it was hot. Ms. Tara came with us and was a great help. Ms. Tara, Noam, Meena, and I finished from 7th-16th street in an hour and 20 minutes, and Aba, Tzvi, and Laeya did 16th-7th in the same time. It worked out nicely, and we got a lot of garbage. I do not understand why it is so hard to throw away cigarettes, but then I guess we wouldn't have any garbage to pick up. 

On Tuesday I flew to New Jersey. I have gotten to hang out with Uncle, Hay-Hay, and baby Isla (who as of this moment is officially a one-year-old). She never got to meet you and it still breaks my heart. I went to Meena's friend Sophia's brother's wedding tonight in New York. It was a beautiful affair, and I loved spending time with some of my VV friends. There was a girl in a wheelchair there and I wonder what her diagnosis is. I couldn't stop smiling watching her be pushed around in her wheelchair and dance with everyone. My heart broke when I saw her dancing with Sophia's brother, and while she isn't his sibling, it dawned on me that you won't be at any of your siblings' weddings. Aba said that you would be there in spirit dancing more freely than you could have ever been. It was an attempt to be positive about the reality. I kept in tears, but they were filling up my eyes, and they are coming out now. You missed Laeya's bat mitzvah, and you will miss the others, but I had not even considered weddings yet, and watching this girl dance with everyone pierced my soul. I hate when things like this sneak up on me. 

I hate that I have worked so hard to be where I was and it now seems like I have to start back over again. Why is grief so stinking hard?!  Why is it 1027392 tiny Sonzee-steps forward but an immediate catapult back? Maybe it is better that it all happens at once so when I eventually crawl back out of this Alice in Wonderland hole I won't (hopefully) fall right back down again. Maybe we can get a lot of the hard stuff out of the way now so I can have another 3+ years to build back up to before I fall back down? 

Sometimes your death mirrors your life spectacularly. I remember during your life someone once asked me why I was afraid to have hope or think positively about your future...and I remember the answer being because I was hoping it would make the fall less intense/less harsh/less far. In hindsight, I am unsure if it made anything any easier to cope with, but I won't know because I never had fictional dreams of a life I knew in my soul you wouldn't ever live. Sometimes I feel like it is the same with your death. Except I have allowed myself to get hopeful and to get comfortable in where I am at, so the fall down is extremely harsh. It feels like I am right back at the beginning and it sucks! 

Anyway baby girl. I am going to go attempt to get some sleep. I miss you lots! 

Until next time. 

Love always. 

Ema