Lost

Dear Sonzee,

Hi baby girl. It’s been awhile since I’ve written you a letter and I don’t know if I should apologize or not? I’d say not because I haven’t felt like I needed to write to you, and let’s be honest, the letters are more for me than they are to you. But then maybe I should? Maybe I wouldn’t be in the predicament I am finding myself in had I just spent the last year sending you letters like I used to do? I guess hindsight remains 20/20 even after you’re gone.

This week I took a test to be board certified in assistive technology. The test was heavily concentrated on content meant more for a PT and OT. I have been studying for months, but I didn’t pass. I sat in booth #11 and thought it was so fitting because of you. I left after the test with a feeling of uncertainty and Aba told me to check my email because I probably passed and why wait. I didn’t. 574 is what I got and I needed a 600. I wasn’t upset though. Instead I felt lost. Why did I even take the test? What was the point? Aba had asked me will it give me a raise? Nope. He asked if it would give me a promotion? Also, nope. Why do it? I don’t know honestly because all it would do would give me an additional 3 letters added onto my already 8 letter professional signature. 

I don’t know why I took it, but now that I’m invested in the journey, I will retake it in 6 months or so again when I am able to, just because? But why? I don’t know. 

I don’t know a lot of things lately. 

We close on the sale of bear pines on Monday. My heart is broken. I know we never used it much recently, I know it served its amazing purpose after you died, but selling it makes me feel even more lost. I feel like you’re so far away. Nothing makes that better, except things. Things that were put in place to make it feel as if you were near and I feel like it’s all slipping away from me. 

Today at shul there was a speech about silver linings. While the rabbi spoke my mind fought with itself. “I am the queen of silver linings”, “I can look positively at all the crap thrown my way”, “but there is no silver lining when you are given a medically complex kid and watch that kid suffer and then watch them die- slowly- for years- and then officially over a 2 week period.” Screw silver linings. Just once, I want a person to not tell a story about a friend or a person they know who buried a kid and they looked at the silver lining and depression be gone. IT DOESNT WORK LIKE THAT! Ya you aren’t suffering, great that’s the silver lining I have. Your life nor your death saved anyone because kids are still being born with CDKL5 mutations! What silver lining is there that is actually a silver lining that makes any actual difference???? Give me one person who has buried their kid and says - “you know what; the world and our family is better off without them”. 

There is maybe some rationalization so you don’t kill yourself since one of your purposes of life have been taken away. There is maybe some attempt at the internal conflict resolution that plays out in your mind. Maybe some attempt at justification of the loss. But, a silver lining??? That is said by other people who want to try and take a horrific situation and make themselves feel better about it. That isn’t said by the mother or father of the child they birthed and buried, because no matter what story we tell ourselves over the death…it’s lies, because we spend the rest of our lives- or at least for me. 4.5 years of them, simply lost as I struggle to comprehend what stupid potential silver lining is left in understanding why I will have to honor your 5th year away from me in 3 months and 1 day and why you will “turn” 10 in a grave in 3 months and 9 days.

I wish you would come visit me already! Maybe it’s you in the rain tonight (please don’t flood our home!)

I love you little bear!

Until next time.

Love always,

Ema 

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. 

Stranger in my old home

I got off at the Thomas road exit from SR 51, turned right and turned left to enter a place that once was my second home. I couldn’t understand how I was staring at a new building that I never even saw the ground breaking of or a rent-a-gate around. An entirely new garage fabricated in what has felt like overnight replacing a building I attended meetings at while sitting on an advisory committee. When did it get taken down? When did they start and finish this beautiful new garage? We parked. I “knew” the front entrance would be closed at 8pm, but then again, maybe not? What else has changed?

As we walked to the emergency room entrance, the one built after Sonzee was born, the one that made our emergency visits a breeze, to the right I noticed another new building. What is it? I don’t even know. I didn’t see that come to life either. We entered the double doors and I told them we were checking in for a sleep study. We’ve done this before, I know where it is, or so I thought. “Go straight and turn right into the imaging area, they’ll check you in there”. My confidence returned as we walked. Sonzee’s oldest sister recounted waiting by the pharmacy (we saw this one built) and various other memories. When the tech came I “knew where we were headed”, we had plenty of EEGs in the sleep study area, it was the first place Sonzee had her first EEG, the one we learned we wanted to be “normal”, the one that “was”. But, then we headed towards the elevators. Why? What? Where are we going? Instant panic, please not the 8th floor. He pressed 3, some relief filled my body, but then I had to say, “oh it’s no longer in the east building?” It apparently moved a year ago. “Oh”. Another slap in my face. No big deal. We exited the elevators. To the right I know well. There’s a laundry room and a “garden”, but it’s not really a garden. It’s a place where the breeze blows and you can get your sick child some fresh air, IF they’re not on restrictions. We turned left. Ok. But wait. I’ve been here before, why? 2018, aka the year the Zaila Family celebrated Christmas, despite also celebrating Chanukah. Julie our incredible child life specialist didn’t care that we’d celebrated Chanukah, we were to also celebrate Christmas, and that we did. Bikes and toys galore, blankets, everything you can think of, shopped for right there in that open space with floor to ceiling shelves in its own remote toy store. I remember the tears I felt when I walked in and how overwhelming it all was. Now, there are rooms, large rooms, with new fancy parent beds in the new sleep lab. We walked into room 3 and a bear waited on the bed. Fitting. 

The night was uneventful unlike plenty of others I’ve spent as a “resident” at 1919 E Thomas Road. Her sister donned Sonzee’s special bear EEG hat as she slept with her new bear and her “Sonzee bear”  In the morning as we left my eyes lingered towards the garden. A part of me wanted to go there, but I fought the urge, turned right and we went onto the elevator. As we got off on the 1st floor at 6am the “resident” moms in their pjs and hospital socks and shoes were heading to Starbucks, a life I once lived and knew all too well, but it’s one that now remains in my mind. We turned left and headed out the double doors and walked to the car in the old but once “new “parking garage as I watched the doctors and nurses and staff enter the now really new garage, the one I assume is for them because of the code box but something I won’t ever officially know. 

It’s been almost 5 years since the last time I took the elevator up to the 8th floor. It’s been a couple of years since I closed the door to a spot on an advisory committee because I needed to help myself move forward. It may (and in some ways hopefully be) the last time I ever take those elevators of PCH, but my heart breaks as I have officially become a stranger in a place that once was once my old home.   

 

Moving forward

There are days that you experience during your life that you remember so vividly it is as if you could relive them in your mind. They are typically the best days of your life or sadly the worst, but there are those days that are not quite so simple to categorize. The ones that tug at your heart because they represent both a beginning and an end of a period, or an experience. Those moments, similar to the best and the worst also find a way to settle into your mind and sit forever in a crevice. The emotions that come with them are a blend of happy and sad, panic and calmness, a burst of tears and a deep breath, complete opposites like the crashing of a wave and then the receding water back into the ocean, an earthquake that comes lasting for less than a minute and then ends, or a breeze in the wind that slowly fades away.

I've learned over the 4 years 2 months and 4 days that grief is a constant battle of finding the balance of my inner ocean. For the most part, I do my best to keep the crashing waves subtle, but there are days on this journey when the crash is impossible to ignore. There are days when the balance feels insurmountable. Those questionable days become just as significant as the celebrations of her life and the honoring throughout and since her death. These days in a sense aren't negative, but it is difficult to call them positive. They are what others would call moving forward, and yes, in a sense that would be correct. But something that I have also learned on this journey is that when they tell you you won't move on, that you will move forward, that doesn't mean it will be easy and it doesn't mean it won't hurt like you just buried your child all over again. 

I remember the first day I had a conversation within my mind over not going to visit the cemetery for the first time after Sonzee died. I watched the clock tick by knowing as time passed so would my opportunity to sit by her grave. I knew when the clock read the time I needed to leave by to beat the gates closing that if I didn't get up and go I would miss my chance. I sat there and reminded myself that I wasn't going for her, I was going for me, and I was truly "ok" not going and the sadness was the fact that I was ready to not go. I remember the pain that swirled in my chest and the overwhelming sadness that swallowed me whole, the intense guilt that it brought along with it. I did it though, I watched the clock strike 4pm, and I was okay, life was moving forward. 

I remember the first sibling/cousin picture that happened that I "forgot" to put a "stand-in" for Sonzee. I remember reminding myself right after it happened that it meant it was okay, it was part of the process, I was moving forward. I felt panic, sadness, and tears, again with the guilt, and the realization that it was okay, life was moving forward. 

I remember the first time I stopped writing Sonzee weekly letters. Like visiting the cemetery, they too were more for me than her. I found a new way to communicate with her, I didn't need to send her a letter on a blog. The guilt settled in strongly paired with so many other emotions. But, like the other events, I was okay, life was moving forward.

In May of 2020 in the throws of COVID, 3 months after we buried our Sonzee Bear we ventured to Flagstaff, and like much of the things we have done in our marriage, we threw a random dart and did something crazy, we purchased a house in Kachina Village. That home became our Bear Pines, our home away from home, our family retreat, a place Sonzee's baby brother labeled "other home". That home was more than just a house, it was the place that held my sanity together and brought us so many insane memories. It was a place that filled a void and gave so many others a sense of peace to venture to. But, like so many experiences since our Sonzee left us, it has served its purpose. Our family as a whole is ready to move forward. There is hockey and gymnastics and adventures that remove our ability to go up north for the weekend. I know that life continues moving forward, I know that selling Bear Pines is the right thing to do, it is time, and we will be okay because life is moving forward. 

The pit in my stomach and the tears streaming down my face are not because I am sad that we are selling, it is because I know I am ready and it breaks my heart. It's how I felt when we sold 19th street, allowed the insurance company to throw away her wet furniture after the flood, and painted over her medication door. Moving forward is so hard. It is filled with tremendous guilt, questions over how she will be honored now, and fear that eventually, I will leave her completely behind. The tears, the sadness, the red eyes, and the horrid ugly crying is because moving forward is so freaking scary, and I miss her so damn much. But deep down I know, like every time before, it will be okay...because life will continue to move forward. 

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 

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.

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