6 years

Dear Sonzee, 

Today marks 6 years since I last held you. Since I last gave you kisses. Since I last snuggled you. Since I last wrapped you in a blanket. Since I last carried you through the hallways in our old house. Since I last saw your siblings give you a kiss or a hug. I would say I can't imagine how time has gone by. But similar to when people say they can't imagine anything related to a medically complex kid and them dying, I will correct myself immediately and say, I can imagine, I just don't want to. I don't want to process that life has continued on for the last 6 years without you. It has to be impossible that 313 Monday's have gone by without you being here, but the reality is real and it is beyond cruel.

I have found myself confused when I see girls your age and realize had you not had a mutation on your CDKL5 gene, you would be in 5th grade, a year away from your Bat-Mitzvah. It's a challenging concept to wrap my head around. Momentarily I find myself back in the land of what if. Forget, what if you had never died. What if you had been born with all of your genes functioning properly? What would that life had looked like? Maybe one day I will get to see a peak into that life and realize the one we did get to live with you was actually the better one? I can only hope at least. 

This year I am on the verge of being numb to the redundancy of my feelings and allowing myself to sit in the depths of the sadness. It doesn't help that your twin girl is living her best life 7500 miles away from home. On one hand, ever since you died the absence that is created when your siblings go away doesn't even light a candle to the absence that your actual loss brings. On the other hand, the house is missing the arguments between all of your siblings, her daily routine, her bedroom light being left on (well actually, Tzvi went in to use the bathroom the other day and left that on, so maybe it does get some use), her presence, her friends coming and going, her constant requests to be driven here and there or to go out shopping. We went from being a group of 7, to 6, now to 5. Although I pray it won't remain that way, but life has shown me that anything can happen and I am not naive to think it can't. 

Over the last 6 years I have learned a lot about myself. Most recently I learned I love walking around carrying live chickens and I love taking care of foster kittens. The reality is that I am just trying to fill the monstrous void you left. It's the void of you yourself paired with the confusion of what on earth can actually make me even momentarily happy since you left. There is a significant void that nothing can fill, but it's definitely not for a lack of trying. 

So many times during the last 6 years I have found myself thankful for you not being here. I mean I am thankful for you first and foremost. No more seizures. No more failed GI system. No more broken bones. No more pain. No more being stuck inside your body. I am thankful in general. Not that I doubted it, but there is still no cure for CDKL5, so I am thankful we weren't sitting here filled with false hope waiting. I remember the first year after you died, I was torn between utter fear there would be a cure and doubt there ever will be one. 6 years later, I just sit here feeling broken for every family that will eventually live this side of the journey, but also relieved that the fear of when for you/us has come and gone. Now, it just is life. No wondering when. No wondering what life will look like. Not wondering what the future would look like for you in a world where aba and I had died first. Not wondering how extra difficult your siblings' lives could have been, or what they might have missed out on, or what I as their parent would have missed. I am thankful that as your mother I am now the one who has to suffer from your absence. If I am honest though, I think your suffering was far greater. For me it is just a permanent pain that despite my feelings 6 years ago, I have actually managed to learn to live with. It is ever present, constant, nagging, and never ending, but so are my thoughts about you. 

I hope you know how much you are truly missed. Sometimes I wonder. Sometimes I read the letters "from you" that your twin girl has written me on mothers' days or my birthdays throughout the years and pray they are somehow your words being written through her. I truly hope you really do visit even though I don't see you. I hope you really are at peace wherever you may be. I hope you know how much I wish I could twirl your hair and give you one last kiss. I hope one day I get to give you another cuddle, but until then I hope you have someone to give you hugs for me. I hope you are settled wherever you are. I hope the last 6 years have treated you better than your earthly life was able to. 

I love you little bear. I miss you.

Until next time.

Love always, 

Ema

Sometimes I wish the world could know just who you are to me
But some days I feel selfish like you're a secret I should keep....

....I wish to you the greatest things and all your greatest dreams

Even if that means they take you far away from me

 

2025

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

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

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

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

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

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

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

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

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

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

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

If happy ever did exist...

Hi baby girl. 

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

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

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

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

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

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

Because this is what happens, every single time.

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

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

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

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

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

Until next time. 

Love always and forever, 

Ema

Coming to a head

Dear Sonzee, 

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

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

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

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

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

 

2 boys and 2 girls

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

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

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

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

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