2025

It is 5:59pm on Wednesday, December 31, 2025. Another year about to be finished that Sonzee never lived. Oh, how my heart still hurts the same as it did back in 2021, after the first year that came and went without her physically present. If only that could change somehow. Just a little something to remove the sharpness would be nice.

2025 was a year that I wrote my fewest blog posts to date, capping it off at a whopping 5. It isn't that I didn't have anything to write, it is more that the redundancy makes me hesitate. The knowledge gained over the years means I am acutely aware of what sitting down to honor my feelings will do. The same pit in my stomach, the same heaviness settling in my chest, the same tears that will flood my eyes, the same pain that I try so hard to keep at bay to continue to be able to function, in similar words of Sonzee's older brother, "it hurts to [write] about her, why would I want to do that?" Fair point sir. 

2025 finished with my 801st blog post being written. I suppose I could celebrate that.

2025 brought another travel hockey season and a pause but restart in competitive gymnastics for Sonzee's siblings. To watch them do what they love but face the challenges they deal with while doing so breaks my heart. There is a plan to it all, sure, but I wish they didn't have to struggle or be dealt with anything negative after all they have had to deal with in their short lives. Sonzee's oldest sister took up band and is playing the guitar. Her little brother is still figuring out if he wants to play ice hockey or soccer. 

2025 brought ant colonies and 2 chickens into the Zaila household. A new renovation (that is still not fully completed), but maybe by the next new years eve blog it will be. 

2025 brought the acceptance of Sonzee's twin girl being accepted to a study abroad program for this spring semester, starting in just 19 days. The concept of going from 5 kids to 4 kids to 3 kids actively living in the house for such a lengthy amount of time has not fully been processed. 

2025 was the year I visited Sonzee the least but spoke to her the most. It was the year she was given the least number of painted rocks, but the year I thought about painting them but not doing them the most. (The thought for sure counts more.) It was the year I still struggled to accurately communicate how many children I have but decided on using -ish if I cared to talk more about her. 

2025 was the year Sonzee turned 10 but will forever be 4 years 11 months and 24 days. 

2025 was the year that Sonzee's death outlived her life. I often wonder how I have to live longer experiencing grieving her than I did at her living her life with her. That won't ever make sense. 

Since I don't have any positive way to finish 2025, I will repost an excerpt from my 2024 New Year's Eve post.

In 2024, I accepted that there’s no "fixing" grief. I came to terms with this in the same way I had to accept that a cure would never make Sonzee an active participant in her own life. I accept grief for what it is: permanent, ever-changing, and woven into the fabric of my existence. I accept that it will influence everything I do, every day. I accept that others, even family members, may never fully grasp the depth of grief’s impact. And I accept that there will always be a void—one that nothing can fill. It’s larger than everything else, and though it sometimes shrinks, it is never gone. It can swell at any moment, without warning, and consume everything. I accept grief, but I don’t like it.

If happy ever did exist...

Hi baby girl. 

How are you doing? What have you been up to? I can almost hear you teasing me, “You know how death is, Ema, I’m really busy.” I know I don’t need a reason to write to you, but you probably already know there is one. My brain has been stuck on repeat these past two weeks, and yesterday it all came crashing down. So, I decided it was time to write you a letter.

When you were born, you spent eight days in the NICU. While I was there, I received a gift package filled with thoughtful items from a mom who had lived the NICU life herself, someone deeply woven into the special needs community.

A few weeks later, when we were admitted to the PEMU room at PCH for monitoring, we had our first visitor. It was her, the same mom who sent that package. She came in with so much warmth and understanding. I remember getting up to use the bathroom, and she held you close so I could take that short break without panicking. Just before leaving, she held you near her face and whispered, “Do something, or cut this shit.” And no sooner had she walked out before the door even closed, I pulled the seizure alarm cord for the first time. That was when we finally had confirmation.

In the weeks that followed, I remember so many phone calls and texts with her, her optimism ringing through my fear. “At least it’s seizures,” she’d say. “You can treat seizures.” She was the one who understood, who always had words when I couldn’t find my own.

And then, the day you left me, I left that world. Partly by choice, partly because those still living that life don’t really want someone like me in it. I became the mirror no one wants to look into...the living reminder of what could happen. And for me, they became the reminder of everything I lost. It’s mutual, really. Too painful for both sides.

Five years, eight months, and twenty-five days after your journey began, she has now joined mine. My heart feels shattered for her, for us, for me, all over again.

Because this is what happens, every single time.

People who haven’t lived this life say how sad it is. They say they “can’t imagine,” because truly, they don’t want to, it’s too much to even picture. They’ll grieve for a bit; they’ll be sad for a while… and then life will go back to normal for them. Their children are still alive. Their homes are still full.

But for us, the ones who carry this forever, there is no going back. We cry in the shower. We hide our tears from the others. We wake up every day under the weight on our chest. We argue silently with ourselves about whether to help another parent, knowing the emotional toll it takes. We debate medication just to get through the day. We live life divided into “before” and “after.”

We try to figure out how to live again. How to find meaning. How to feel anything that resembles whole. We take family photos that include a grave. We'll make every song relate to you in some way. We list your age as if you’re still here, just to avoid awkward silence. We don't always mention that we are part of a secret club and sometimes that leads to horrible guilt, but the alternative requires energy we just don't always have. We imagine what you might be doing in a place no living person can ever understand. And every time another child dies, we lose you all over again.

So, here I am. Back in the hole I was just attempting to crawl out of after a challenging 3 weeks, sitting with you to hopefully allow you to help pull me back out. I still don't know how it works, but please go look for Avi and show him the ropes. He's a lot older than you, but you have more experience in his new world. Tomorrow he'll become a close neighbor to you. Aba will go and see you; I am sorry I just can't go sit under that pavilion. I love you baby girl!

"If "Happy Ever After" did exist
I would still be holding you like this                                                All those fairy tales are full of shit"

Until next time. 

Love always and forever, 

Ema

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.

 

2 boys and 2 girls

We never learned the gender for our children prior to their birth. With Sonzee being the 4th Sam had actually wanted to know, but because for the previous 3 he didn't want us to find out, I decided we should stick with our pattern. We already had a girl, then a boy, and then a girl, in my mind of course baby #4 would be a boy. How could it not be? Me an (at the time) very much type A person, there would be no doubt, no question, we would have 2 boys and 2 girls. The perfect family. Afterall, we were evening out the odd number of children, so there wasn't a way we could have an odd number of girls to an odd number of a boy. 3 weeks prior to baby #4's arrival I had a panic attack. We have a boy's room and a girl's room, BUT, what. if. baby. #4. is. a. girl? How would that work? You can't have 3 girls in one room. It didn't make sense. And then....Sonzee was born. A "healthy baby girl" as Sam would write on our social media announcement. I cringed. I asked him why on earth he'd write that. Was he challenging Hashem?? 4 (very long) weeks later, we would learn she had epilepsy, so I guess he was. Within 2 months my perfect image of what our perfect family was going to be, was no longer (but hey, she did have blue eyes so there was always that). 

This year for Passover we traveled to Florida. We took a day trip to Key Largo today to go on Jet skis. Our initial plan was 3 jetskis, Sam with our oldest boy, the 2 girls together, and me with our youngest. Then (as most of my planning goes these day) Hashem said, nah, let's do 2 jetskis, all 6 people can fit on 3, so we will do one for the boys and one for the girls. And so we did. Almost 2 hours into our ride and on the return after so much laughter, speed, and smiles we were idling under a bridge and a nearby boat (aptly named: "This is the Way") and a person on the boat waved to me and as I waved back my inner dialogue took over. 

"Oh wow, 2 jetskis, one that has the boys with the father and one with the girls with the mother, that's even, that's perfect, what a perfect family, 2 and 2"

"But no, there is another, she just isn't on the jetski's, because she is dead, and even if she were alive, she wouldn't be on the jetskis, in fact, would we even be on this trip? What would we have done? What would we have done for the last 5 years? Not all of these #lifeexperiences" 

The heavy hit of grief smacking me in the face, almost cringeworthy to say it was similar to the wind and saltwater doing that simultaneously. Ironic I was on a jetski in an ocean with waves when the grief hit. Another memory a video about grief related to waves. Eventually the grief settles, similar to the waves, but you really don't know when, or how high the waves will be. You know after 5+ years there will be more waves, but you also know they aren't as insurmountable as they once felt, there is a break between them where you can actually breathe, and you can actually see the beauty that is all around you. You know, or rather I'd say you can acknowledge that even though you are no longer whole, you are no longer that unit of perfection that wasn't but was, you still have the perfect family; 2 living boys and 2 living girls, and from the view of others, and in reality, it is actually perfect, but it's always going to be missing the 3rd jetski. 

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

2024

My hands hover over the keyboard, my mind empty of thoughts. I'm stuck, at a loss for words. This feels fitting because, since I started this blog in 2015, 2024 is the first year I've written only seven entries. The more I try to focus on finding words, the more tears fill my eyes, and that familiar discomfort in my chest grows.

Maybe it’s because there are no new words to share, no brilliance to offer, and nothing more I can say to myself that hasn’t already been said a million times since she died.

2024 marks another year that Sonzee never started and will never finish. There were no new milestones to celebrate, no fresh photos to share, no new moments to commemorate. We did, however, honor her with street cleanups and the completion of a new playground in her name.

2024 also brought more painted rocks for Sonzee, some of which have faded after four years, the paint and messages worn away. The cemetery continues to grow, with more people and more rocks scattered around. I wonder, when new visitors walk among the graves, if they know the rocks originated because of our little Sonzee Bear.

This year, Sonzee received more keychains and gifts from our family travels—perhaps the most since she left us. Keeping the top of her gravestone orderly has become more difficult, but I do it anyway.

2024 hasn’t made it any easier to answer questions about how many children I have. With confidence, I say “five,” but it’s the details that bring hesitation and inner conflict.

This past year, I’ve allowed myself to sit with my grief more often, though I still tend to suppress it, to my own detriment. I’ve felt more sadness, more emptiness, and more silence in my mind because of Sonzee’s absence. But I’m still uncertain what to do with all of it.

In 2024, I accepted that there’s no "fixing" grief. I came to terms with this in the same way I had to accept that a cure would never make Sonzee an active participant in her own life. I accept grief for what it is: permanent, ever-changing, and woven into the fabric of my existence. I accept that it will influence everything I do, every day. I accept that others, even family members, may never fully grasp the depth of grief’s impact. And I accept that there will always be a void—one that nothing can fill. It’s larger than everything else, and though it sometimes shrinks, it is never gone. It can swell at any moment, without warning, and consume everything. I accept grief, but I don’t like it.

2024 was the last year Sonzee should have been in single digits. It marked the beginning of “10 Weeks Until 10,” and I started leaving painted stepping stones at her grave. I hope, wherever she is, she’s able to step on them.

2024 is also the last year she lived longer than she will be gone. A concept my mind struggles to accept.

2024 was simply 4 years 10 months and 29 days without our little bear.

Grief Depression

Last week, we celebrated our fifth Rosh Hashana without Sonzee. Sitting by the window the first morning, my brain started to write like it used to. Three days later, I hope to remember what I need to get out of my mind. 

I spoke to someone last week who mentioned they were comfortable enough with me to make a comment that when someone is depressed they just want to give them a list of things to do because that will occupy their time and they won't have time to be depressed. Ha! I thought to myself if you only knew what the true weight of depression feels like. I cannot speak for typical depression, however, I can speak volumes for grief depression. That is if there is even a distinction between the two? I honestly do not know.

It has been 4 years 8 months and 3 days that I have been living with grief depression. I am unsure if that makes me an expert or not, but I feel like it gives me some merit. It has been 3 years 2 months and 3 days since the unspoken time limit of my grief should have ended. (You get a solid 18 months to actively, openly, and without fear of judgment truly grieve your child, after that, the timer on the invisible clock beeps, and the grief and depression of your dead child disappear, as simple as saying "grief and depression be gone!") JUST KDDING, they don't actually disappear, (SURPRISE!) we bereaved parents just become pros at keeping it bottled up, safe for only specific people, or only letting it out accidentally when the emotions become too overwhelming to suppress. 

The truth is, my days are beyond busy. Between working full time, taking care of a home, and working the evening taxi driving shift for the 4 remaining children I have to their various after-school activities you would wonder how I could actually have time to add grief depression to my list. I assure you, like 1000 pounds of bricks sitting on your chest it is there. Suffocating its recipient to the core, making it beyond difficult to literally put one foot in front of the other. There is no real choice in the matter. Can you imagine telling your boss that you aren't coming to work because the weight of a collapsed skyscraper is sitting on your chest not allowing you to move? Do you think your living children would understand if you said, "Sorry honey, no gymnastics today, your dead sister has tied me down to the chair and I am unable to get up to drive you". Grief depression at its lightest is a 5lb bag of flour sitting on your chest. You shift it around in your arms for yourself to make it appear easier to carry, but the reality is, it is not. In the words of a favorite princess, "conceal, don't feel", becomes a daily mantra. 

Life continues to go on and quickly at that. There is little time to wallow in the grief depression, and sometimes wallowing is even too exhausting, but if you wanted to know where I will be for the next week of my fall break, it will be basking in the depression of my grief on my couch playing FarmVille and allowing the weight of the fact that I buried my almost 5-year-old little girl 4 years 8 months and 3 days ago sit right smack dab on the center of my heart, because grief depression is heavy and sometimes you need to relearn how to carry on with it because it moves itself right on back to the very top of the to do list. 

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

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 

2023

As tonight turns into tomorrow, the 3rd full year will be complete without Sonzee physically with us. It has been 4 years since she was last alive at some point in a year. Tonight, 5 years ago was the last New Years eve Sonzee was alive. My last paragraph of my 2019 post leaves me, still, hollowed to my core, as it has done in other yearly recaps starting in 2020.

It is hard to say whether 2019 was Sonzee's worst year, she has had so many rough times during each of her years, I cannot say one full year was actually the worst, but I can say this year was certainly not her best.  I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best.

2023 was the year that I wrote my fewest blog posts. 46 (counting this one) to be exact. It was a year I learned the truth of that fancy saying I would say is my mother's most famous quote, "less is more". I wrote fewer letters to Sonzee on her blog this year than ever in her life and death, but more were written in my head. I shared less about my feelings and less about my grief, but the emotions of my grief were the largest they have ever been. I visited her grave less this year but felt her closer to me more than I have since she died. 

In 2023 I learned that although I have a lot of her items, the tangible items I have bring me less comfort than they once did. This year I truly learned she is with me more often than I want to give her credit for (or rather give myself credit for believing). I learned that signs are always there if I let go of the fear of others' opinions because I need to remember unless you have buried a child, you really do not get it. Clouds in the shapes of hearts and rays of light in a picture might be crazy for others to believe are my dead daughter, but it doesn't matter, because in 2023, I realized if it helps me that is what matters. 

2023 was a year I spoke about her less, but when I did, I didn't feel my 2022 or earlier need to justify her death. She was 4, she was my 3rd daughter, she was my 4th child, she died, and that is horrific. I learned that I don't need to soften anyone else's blow or ease their discomfort by stating that she had a genetic disorder. It isn't any less tragic because she never was typical, I don't know why I ever felt the need to make her death sound any less awful than what it is. 

2023 was the year that I was able to talk about her more with less tears. The tears still come, the pain is still present, but a lot of the time, talking about her over the last year just made me happy. 2023 was a year I was still presented with challenges when asked how many children I have. Sam seems to find it so easy to simply say, "Four kids here physically, and 1 in heaven". Huh, so simple, yet still for me, so complicated. 

In 2023 I became less angry about her loss and sadder about her absence. Avoidance was a significant part of 2023 because the pain is still present. I am still not ready to fully allow myself to grieve when it hits me, and I only sit with it for a little before I tell myself another day. Less is more is certainly true when it comes to grief. The less you allow yourself to do it, the more it returns. Maybe I'll learn how to accept the grief in 2024?

In 2023 I spoke to Sonzee's epileptologist and 2 of her 1:1 nurses, and many others who were part of Sonzee's life, honoring the message I read to her the day she was buried. In 2023 I introduced Sonzee to people who now bring her up to me and feel comfortable talking about her. 

To finish off my last letter of 2023, I will quote myself from the same letter referenced above. 

While I wish I wasn’t writing you a letter I am unsure you can even hear, my words will never be able to fully express how extremely grateful I am that you are no longer going to have to experience a millisecond of discomfort again, and that is what is going to be my forever comfort and allow me to put one foot in front of the other, because knowing you will now forever be at peace is worth every ounce of pain that will come my way.

As we close out 2023 and enter into a year that will become the last year of her death that will be less than the number of years that Sonzee was alive, I hope and pray that I will find a way to cope with this challenging reality. But I will continue to be indebted to Hashem, that she is living freely among many of her friends and will never experience any level of discomfort again...and so for that, I will gladly continue to take all the pain that comes my way as I struggle to live without my little bear.

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

Expired

When Sonzee first died a close friend of mine whose daughter had already died told me “Randi, you’ve got 18 months before you aren’t allowed to grieve anymore”. We joked we should write a book about our time limit and things we should advise other bereaved parents to do during that allotted time. I think we chatted about it two times and that was it.

Through all my reading of grief books and online and in person grief groups I had heard there would be or it was at least referenced, that people would expect grief to end by a certain date. For 2 years on the grief journey I thought how I had been lucky I hadn’t really experienced any of the “negative”’comments, thoughts or insinuations. There were brief glimpses of idiocy presented to me, like the day after Sonzee died when someone told me I’d get over her death because her sister in laws cousins friend had lost a son to cancer and she had moved on so I shouldn’t worry; I’d get over it. I turned that into a joke during shiva with my closest friends with either them asking me if I was over it yet or me saying we shouldn’t worry because in a few hours I would be good to go.

A sprinkle of comments here and there would occur, but always during the first 2 years at least one person would ask me how I was doing and insinuate they were wanting to know how I was “truly” doing. Truly wanting to know how was I coping with the death of one of my children. Albeit an awkward question to answer, at least it was asked.

By the start of year 3 on this grief journey that question was no longer asked by those who are not true friends. Attending events seeing people I haven’t seen since Sonzee’s death or around that time, no one asked. Maybe they didn’t care? Maybe they didn’t want to “make me think about it” (ha! We can discuss that in another post). OR maybe, it’s simply that they didn’t even think about it anymore. 

It’s been 3 years 8 months and 17 days. I was asked one time during the last 8 months how I was really doing, and it was followed up with a “but aren’t you happy she is in a better place?” A statement that has nothing to do with how the death of one of my daughters still, “even” after 3 years 8 months and 17 days feels the same if not worse than it did on day 1. 

I realize every day how much life goes on. I get it. She died, people felt badly and then resumed their lives. People mourned her loss and maybe even a few still think about her, and maybe some even wonder how I am truly doing, but don’t bother to ask. It’s not fine, but at the same time it is, because I am here to explain, she may have died. Her life may have expired, my pain has not and it won’t ever. That’s ok because grief is just how I will continue to love her. I don’t need anyone to call and ask me how I am doing, I don’t need to have to dodge the uncomfortableness of others when I might bring her up. I am just here to tell you, grief is forever, so a true check in on all your bereaved parents shouldn’t expire.

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

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

"You look happy"

“Your pics look like your happy again a lot, and your family is happy”.

I had to tiptoe my reply gently as this was a newly bereaved parent. I know what they were searching for. I spent Sonzee’s entire life with parents of newly diagnosed children seeking some sort of hope that maybe their child would be the one to defy the odds while living with a CDKL5 mutation. I didn’t want to crush their dreams early on in their journey, I knew deep down after time went by as their child’s skills or lack there of were more obvious, they would learn the reality, (plus there was a (slim) chance I might be wrong).  When the medical interventions became more profound it would be more difficult for them to convince themselves otherwise, better let them figure things out on their own. Not every child with a CDKL5 mutation is affected as severely as Sonzee was, not every 4-year-old with a CDKL5 mutation dies, it just happened to be our reality. So, I didn’t need to throw negativity into their face.  As such is the same with newly bereaved parents. They come seeking some sort of hope, some sort of comfort that life will go on, something, anything that says this won’t be as awful as I imagine, forever, right?!

Don’t be confused by a smile and being happy. There are happy moments, and the smiles when they happen can actually be real, but there is always a dark cloud hovering close by. The happiness and smiles are momentary, almost as if reality has halted and for a split second I am living in the moment, a happy one. A moment that will fade all too quickly as soon as the recesses of my mind remind me that I buried a child. Almost 3.5 years later there are more happy days than sad ones, but some days it is still hard to breathe. There are times when the happiness gets smacked out of me like the wind being knocked out of your lungs after a big hit, and I find myself gasping for air. Happiness exists, yes, it does, I can give you that. But will you ever be as happy as you once were as you stood wrangling all of your children after whispering threats in their ears to smile for the family pictures? No. Will you ever be as happy as you were sitting at your children’s school events when all of your children were alive and you were brought to tears by extreme happiness and amazement that your child completed a milestone? No. Will you ever be as happy as you were at your major life milestones when you were a complete family? No.

You will smile again. You will laugh. You will celebrate all the milestones that are yet to come, and you will for those seconds actually be happy. But then the shadow of what your deceased child won’t be celebrating, or the reminder that the last time you celebrated “event xyz” it was for your deceased child will pop into your mind and the happiness becomes muddled. The happiness is split. At least for me it is. I get happy, but there is a max to it. I enjoy life as much as I can, I smile when I am happy, and when I laugh it is genuine, but the realty is, I buried my little girl, there is a max to my happiness. Everything is harder and simple things are difficult.

Are we as a family happy? Yes, our family of 6 smiles and laughs and has an amazing time. We appreciate all of the moments that come our way. But don’t let the smiles and the pictures fool you, because the reality is, we are supposed to be a family of 7, so we are missing the piece that makes us irrefutably happy. 

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

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