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. 

Sonzee "turns" 10

Dear Sonzee, Somewhere, somehow you are now double digits. I wonder if you would have figured out sitting independently or have taken your first independent steps by now. I wonder if you’d be tiny like your sisters or maybe you were given the genes your brother is excitedly anticipating getting? Would you have spent the last 5 years struggling with your feeds or would you have “grown out” of that? Maybe your seizures would have calmed down too and we could have learned more about who the real you actually was; not just the Sonzee on way too many medications. I wonder what you have been up to for the last 5 years. How have you celebrated your birthday in Gan Edan? Do you have new friends? Are you still friends with the kids we knew who joined you or were there for you first? Are you actually free? Do you know that you are? I wonder if you know how difficult it is for me to honor this day, because it’s not normal for a parent to celebrate the birthday of their dead kid. It’s not normal that you aren’t here to celebrate your own birth! Its not normal to decorate a grave. It’s not normal that your last physical birthday was when you turned 4. It’s not normal this day is even still on the calendar. In many ways this day is worse than all of the other days that surround you because today should be about YOU. It should be about all of the growth you’ve made during your LIFE. It should be about the last year of all of things YOU have done. But instead, it’s just another year of your grave collecting rocks (that I may not be able to even paint anymore before cemetery owners are stupid- but that’s for another day), another year of wondering about you, another year “reminding” me that I have no control in this life and that’s just the way it goes. So, wherever you are baby girl - do whatever makes you happy, and if you could ever come and see me, I’d really really love it! Happy 10th birthday Sonzee…you are beyond loved and missed….

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.

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