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.