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.

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.