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