2:07am

Dear Sonzee, 

Yesterday when your siblings came home from school they excitedly put on rollerblades and went skating. Your little brother just got his first pair on Wednesday, so it was day two for him. They all kept rollerblading into the house which was making me insane and sent them all back outside. I was filling out camp forms and I swear your twin girl had just been told for the umpteenth time to get back outside when I heard her screaming for aba. I ran outside as I heard aba scream back "what happened". I don't know what I expected or thought, but I know a flash of panic over your brother being hit by a car came into my mind. I got outside and aba was rolling Laeya down the street supporting her underarms and saying she broke her arm. I know I asked, "why can't she skate?" The answer was "I don't know". I swear it felt like it all happened in 30 seconds or less despite how much happened. 

A few phone calls later and our support system was fully in place. Meena was going to her gymnastics private and someone else was going to pick her up, Noam was off to one of his besties, aba was off to hockey with Tzvi and I was on Laeya to PCH urgent care duty. Morah Zupnick and I were playing the game of beating the urgent care posted times. We won. They said 30 min when we got there and we were seen within 15 minutes and were sent on our way to the PCH ER within an hour. It was between the time they explained her wrist fracture and displacement and us waiting for them to call the hospital to let them know we were on our way that I realized I was going to have to walk through the sliding doors at 1919 E Thomas Road. 

I don't remember the exact date of the last time I walked through those doors. I don't even remember what month it was. Like riding a bike, I drove to the familiar exit and I made a right, a left, and a right to find a parking spot right in front of the ER. She was assigned an orange folder, that was always what you got. I know there are more urgent cases besides a displaced fractured wrist, but they felt because of our time at urgent care we should have a "fast pass" to triage. We were in a room within an hour. I visited the same Starbucks I had visited so many times at night before it closed, but the coffee tasted gross. It didn't matter, another coffee was soon to be on its way to me, also with a hot chocolate for your sister when she would wake up from the sedation. 

The halls look the same. It is hard to believe it's been 3.5-4 years since I was there. It is hard to believe I didn't know anyone, and no one knew about you. I am not a frequent flyer anymore. (Well, except for the ortho department). The tv channels are the same, the movies were also. We watched inside out and Laeya had her amazing laugh. She, much like you had horrible veins and it took a blown vein and multiple people to get an iv into her hand. I referenced you a few times, but I didn't want to make this about you, or me. I put on my Sonzee bear brave face. Your sister was a rockstar the entire time. 

For the procedure, they moved us to one of the trauma bays, you know, just in case. I had a mild inner panic attack over the rare complications. I wanted to vomit with the number of times the doctor said it was unlikely. (so was CDKL5). I didn't say that aloud, but my inner thoughts screamed it too many times. I couldn't sit still, but with your sister finally calm and her blood pressure finally normal I was outwardly composed. Thankfully you never were in the trauma bay she was taken to. After they gave her the sedation they took me to the waiting room. I reminded myself she was going to be okay. I played in my mind the potential chaos that could occur while being afraid of hearing a code being called. (It turns out she only paused her breathing for a few quick seconds and with oxygen her levels rose right back up)

The worst part of the night was after they set her arm and had to do an x-ray. I was standing against the wall in the hallway when a hysterical woman walked by, followed by a few other members of her family. Staring straight. Holding a box. I recognized the cries. I recognized the lost look. I saw the father a few steps behind. He held a blanket, smelled the drops of blood and walked to the sliding doors. I took a few breaths, forcing myself to not run to any of them to wrap my arms around them and cry with them. I wanted to scream that I understood their cries. I remained still. I walked back into the room when I was allowed and paced some more. I did my usual make small talk and asked the nurse how often that happens. She said, "not often, about two times a month." I thought to myself, two times too many. Your sister asked what I was talking about, and I didn't answer. She said, oh you can't say. The nurse then said, "something that hopefully you or mother never have to know". I said, "well, I had a daughter, she had a sister, it didn't happen here, but on hospice...and I really wanted to go and hug that mom". The nurse spoke her sympathies to me and I swallowed my tears and emotions. Your sister was adorable and funny. The nurses and doctors loved her. 

I won't ask why it all had to happen last night. I will try not to wonder why out of the two times a month, one of those had to be the same exact time that I was in the hospital. I am too emotionally exhausted to wonder what the purpose of last night's events was. I thank you for watching over your sister and giving me an ounce of your strength to keep myself together for her. I miss you. I love you. 

Until next time. 

Love always,

Ema

158 and 159 weeks

Dear Sonzee, 

It has been 9 days since my last letter to you. It seems like so much longer. I am so sorry. I hope you know that the lack of letters is by no means representative of the number of times you are thought about every minute. It would be impossible to write you so much, and, you would most certainly roll your eyes and be annoyed if I did. 

The last two weeks have been filled with your siblings' hockey and gymnastics, a lot of work, your birthday, and my slow return to normalcy after the last 6 weeks. The latter is the main reason it has taken me a bit to write you a letter.

After both your Hebrew and English birthdays my body collapsed. It was as if all of the emotions of the last 6 weeks were finally able to be released. It has taken me about a week to mentally get back on track. I wish I could find a way to make this situation make sense. It is just after 6 weeks of being stuck in the grief trenches, the sky begins to lighten, the clouds begin to part, the sunlight begins to peak through, and eventually, the normalcy of what has become our new life returns. 

The typical grief remains. It isn't as intense all at once, it goes back to just coming in waves and spurts. It goes back to catching me off guard and bringing mood swings at a more steady rate. It returns me to an average level of being able to "tolerate stupid" and manage to parent. 

Meena has mastered some amazing tricks at gymnastics. On the floor she can do a running front flip, and a round-off quadruple back handspring. On the beam, she can do a cartwheel and some other fancy-named things. She is really working hard on getting her Kip on the bars. She is hoping she can get it before official team placements happen next month. I hope for her sake she gets it. She is amazing to watch and we are just so impressed with her talent. It is hard to believe she started not even 2 years ago. 

This weekend Tzvi had his President's Day tournament. He and I spent the majority of it in Peoria. His team is not only on the younger side, but they are also on the tinier side. They did amazing not giving up, even when us parents wanted them to. They played an elite team whose program has sent about 15-20 kids to the NHL. Tzvi's coach said to remember their names; I think we all will. They were impressive to watch, but the boys were very much out of their league. We thought that maybe Tzvi would pay a bit more attention in school now that he has had a taste of what talent goes to the NHL, but instead, he said he will just work harder. Okay!?

Tonight was the first class of a pilot program for ASU and Hospice of the Valley called Resilient Parenting for Bereaved Families. I was asked to explain your death, my biggest challenge since, and something that has helped me to cope. I started with a deep breath and mentioned how I don't like to relive your death, I don't like to talk about your last weekend, but I did it, and I allowed myself to cry. I mentioned that the minute you left us was actually peaceful in and of itself. I said it is so hard to pick the biggest challenge, but I settled on it is how I am not naive to think your siblings can't die also. I said that the New Song grief group and friends have helped me to cope, but despite feeling like a failure for needing more help, I admitted that after the first 18 months on this grief journey, I realized it was okay to need the help of medication and for the last year and a half since I started to take it, it has made life manageable, it has allowed me to function, it's what helps me to cope without you here.

Anyway, my love. We are just a week away from it becoming a new month. The amount of time since you have been here just continues to grow and become difficult to comprehend. The weight in my chest is heavier to hold. The hole in my heart is bigger. The love for you is still exponential. 

I hope you are having a great time wherever you are. Thank you for all of your recent visits. I don't doubt your presence. 

Until next time baby girl!

Love always, 

Ema 

   

Sonzee "turns" 8

Dear Sonzee, 

Today, 8 years ago you came quickly into our lives, but 3 years and 8 days ago you slowly left. Making it your 4th birthday we have had to celebrate without you here. It doesn't make sense to celebrate a day when the reason, you, is missing, yet here we are, again. The truth is, this year was the easiest. All of your many signs over the last few weeks have been a significant help with that.

A bit over a year ago a friend of mine realized her father shared the same yahrzeit as you, the 8 of Shvat. She came with us to say kaddish at your grave. While she was there she also noticed that you and her father also shared an English birthday. Aba says the chances of that are about 1 in 40,000. We know how well you understand rare.

On Thursday this week, this friend invited us for Shabbas lunch today. At the time neither of us was thinking about the date. On Thursday night, before leaving for hockey with Tzvi aba asked me if I wanted to celebrate your birthday with a cake. As usual, when aba asks me about plans to honor one of your dates I snapped. Why would I want to have a cake? We have never had a cake, why start this year? He gave reasons why, but I continued to be annoyed. The conversation ended.

Yesterday morning I received a text. It read that my friend's children and she were going to be making a cake for her father, would I like her to add your name to the cake because birthdays can be so hard. I paused. I had forgotten that you and her father shared your birthdays. I immediately smiled and said yes, that would be amazing. It's funny how that came together. I knew that it was meant to be after that text, after all, I am sure you were involved in this orchestration. 

8 years ago you came into this world and everything we ever knew about life and parenting went out the window. Usually, on a person's birthday, they make a wish, they get gifts, and they are celebrated. For 4 years your wishes were your secret only. For 4 years the gifts you got weren't anything you could have asked for. For 4 years you were celebrated the best way we knew how. For 4 years I wished that you would no longer suffer, that you would find peace, and that you would be able to be free. For 4 years you gave me the gift of your life. For 4 years you let us celebrate you with hugs, kisses, and love, the only way we knew how. For the last 4 years, you have made my wish come true. For the last 4 years, you have given me the gift of believing in faith, in signs, and a new beginning of trust in Hashem. For the last 4 years, you have given me the ability to continue to celebrate you.

Thank you for choosing us to be your parents, for allowing us the greatest opportunity of trusting us to help you complete your earthly mission, and for helping me to see that you are never really as far away as it some days feels. 

I hope your actual wishes can be spoken, be heard, and have come true, and I pray when the time is meant to be, that I am given the gift of seeing you live them, so we can celebrate together.

Happy 8th birthday baby girl!

Until next time.

Love always, 

Ema

157 weeks and almost one day

Dear Sonzee, 

These last 2 weeks have been pretty rough, to say the least. I knew they would be, but knowing doesn't seem to make a difference. There is no way to actually prepare. There is nothing that I can do to make it less rough. Maybe that will come in time? I can only hope. 

Over the last 2 weeks, we have honored both your Hebrew and English dates of death. In 4 more days it would have been your 8th birthday. I am looking forward to the completion of all of these dates. The rest of the days of the year are hard enough without all of these days piled on top. Maybe it would be better if they were spread out some, but they aren't and so I try to give ample warning these aren't ideal weeks for me to deal with the mundane, but it seems people just don't get that I become a ticking time bomb. 

Maybe I shouldn't become a loose cannon, and maybe it isn't an excuse, but then again maybe I shouldn't have had to bury you, so I guess that is a moot point. I know it doesn't give me a free pass at everything, and it doesn't make me entitled...but I feel it gives some justification.

This last week while we were in Vegas at the hockey tournament a kid purposefully lunged toward one of Tzvi's teammates and it resulted in a concussion. It was a trigger for me. A child potentially dying due to playing a sport they love by some little piece of work who wasn't taught the potential of his actions makes me sick, angry, upset, disgusted, and so incredibly sad. It is something I have been unable to rebound from. The worst part, this kid's teammates' parents laughed while our player was on the ice not moving. This kid didn't even look back, he didn't even check on the kid, he simply had zero regards for what he did. It is just a damn game. It isn't worth potentially killing someone.

I shared the video of the hit, wrote a post to educate others, and stated that I had hoped his parents took the time to educate their son and I lost 2 "friends". Those two people said I shouldn't have posted the video. One or both of those people said I was reported to the Arizona Amateur Hockey Association. I am happy they did because doing so will bring awareness of that intentional hit. It also helped me to weed out people I do not need in my life. I also sent my own email about the video and the post to AAHA and I know I did nothing wrong. I did not shame this team, parent, or child. If I had wanted to do that I could have mentioned the name of the kid, team, jersey number, and all the little details that occurred, but I didn't. I stand by the post. I stand by my feelings. There is no place in a sport for that sort of behavior. There is no reason to potentially kill a child. The thought of these friends of mine having to bury their son after playing a hockey game is something that I just cannot shake. It shakes me to my core. There is nothing worse than having you gone. I wish no other parent has to join this club, but if they do, it better not be due to an extracurricular activity. 

I took a "mental health" day today and came to be with you. It feels like it has been so long since I have done that. I remember doing this every day after I got up from Shiva for the longest time. Then life continued and I came less and less. Then it became too hard to come. Now I don't do it enough. These grief emotions just get too much to handle at times.  A friend dropped off a Starbucks drink and I brought it with me. I am sitting on this cold granite bench wrapped in the blanket I picked out during our first grief group. I sprayed all of the rocks with a water protectant. I brought my markers to paint you some more. I wish any of this helped. I wish this journey wasn't so damn hard! I wish something would make this all better...but without you back that isn't possible, so I am left to do my best to keep it all together, and honestly...I feel like I am failing.

Love you, little girl!! I hope you are planning something amazing for your birthday with all of your friends. 

Until next time.

Love always, 

Ema

3 Years

Dear Sonzee,

On Friday I honored your 3 year deathaversary while Tzvi and I were in Vegas for a hockey tournament. I received so many texts and Elle sent beautiful flowers. The moms on Tzvi’s team gave me hugs and overall it was a good day.

Tzvi lost both of his games (I am sure you know) because he scored the only goal during the morning game and I was so overwhelmed with emotions I started to cry. It obviously wasn’t about his goal, it was about you, but every emotion melted together and turned into me being a basket case on the top row of the bleachers. Thankfully everyone let it go. 

It’s hard to believe it’s been 3 years in time, but really it feels so much longer when it comes to this journey. 3 years ago Covid was just becoming a thing, but not really yet, and certainly not in the United States. Since then, so many deaths have occurred due to it, schools spent years closed or offering remote online classes, the world shut down, reopened and now…it’s essentially back to normal. Except, you’re still gone.

The last three years I’ve experienced so many emotions and I wish I was done having all the feelings, but I don’t, and it’s frustrating! It feels never ending…because, it is. Which is something I realized somewhere along year 2-3. Year one I was in denial. Year 2 I woke up and realized it was real. Year 3 I realized that this is permanent. 

3 years. When someone asks me now how long ago you died I wonder what people will say in response to 3 years. Will they reply that it is still fresh? Do I fall in that category anymore? Will they say oh, wow, that was so long ago?! (Is 3 years really that long ago?) How will I reply? How will any of the responses make me feel? I. STILL. DONT. KNOW.

3 years has taught me that I can’t make everyone else’s journey mine. I can’t carry any more and that’s ok. I have to let others live their stories and I can’t bear their weight. It becomes far too heavy and it makes the small ability I have to cope with my grief and your loss almost impossible. So I am thankful I have learned that it’s ok to let others challenges go. I cant change their course and I can’t make their pain go away or not occur. 

3 years has me wondering more about what you’re up to and where you really are. It makes me question how life would be if you were here and how it would be if you had never had a mutation on your CDKL5 gene. 3 years has made me miss you more than I can even describe. It brings tears to my eyes to even think about. 

Our family still misses your presence and brings you up often. Noam still talks about you and everyone else does as well. We all wish you were here and we all still grieve your absence in our own individual ways. We all wish you are happy wherever you are and pain free. We all appreciate your visit at the cemetery last Monday. 

I wish every day I could see you and kiss your sweet soft cheeks and give you cuddles and squeezes. I wish I could snuggle with you one more night and tuck you in. I wish every day you’d be here, with us, to make us be the complete family of 7 that we should be!

But, I also wish that you continue on your current journey, pain free, not suffering, being the amazing Sonzee you could be and that you continue to enjoy every single minute.

Love always,

Until next time.

Ema

February 1, 2023

Dear Sonzee,

Three years ago today was the last time you physically entered into a new month.  Every year since when we finish January and enter into February on top of reliving those days as if they are now, I am reminded of January being the last full month you lived and February being the last partial month you lived. You would think those facts would get easier to stomach with the distance in time. They don't. But, thankfully for the other 10 months of the year, the fact hides away in the recesses of my mind.  March is also a finicky month because it was the first full month we lived through without you. As aba said to me this week, so "January is hard for you, and so is February, and then March, April, May...is any month a good month?" The short answer is no. My question back to him was "How are they so easy for you?!"  I wish I could say on the brink of your English deathaversary that your father and I see eye to eye on a part of your journey, but that wouldn't be the truth. Our grief journeys parallel your life journey...I suppose it is okay, our differences sometimes complement one another?!

Since the 8 of Shvat pretty much everyone I am close with has been so amazing. Sunday night the doorbell rang and someone brought over a beautiful bouquet of pink roses. Aba also brought me a Sonzee-esque bouquet Sunday. Ironic that I used to hate flowers, and now they bring me some comfort. East Valley wrote me notes and I had beautiful sunflowers sitting on my desk when I got in to work from being at your grave. Morah Zupnick gave me a beautiful bracelet that has everyone's favorite picture of you in it when you hold it up and look inside. It is the picture we blew up and had at your funeral. The one that is by your Rifton chair in your kitchen corner. It is also the one Kole's mom got etched into the silver necklace I wear every day. The Howard's sent me cheesecake. So many texts and calls and messages of love. It doesn't remove any pain, but it helps to know I am not alone. 

I am a month into this whole #grief365challenge. Some days I post pictures from 2020 and sometimes I just can't. These next two days I relive the regret of not having any more pictures taken of you. The regret that will haunt me for the rest of my life. The only "I wish I had" I have on my list when it comes to your death. No regrets except no pictures and not letting Tzvi sleep in your bed with you one last time. I know I can't change the past. I can't fix those regrets. Not focusing on it doesn't change the reality, I know this, but. I suppose for the complex life you lived and all of the choices we had to make, to only have these as my regrets is a plus. For that I am thankful, but it doesn't change the ache I have to see myself holding you or giving you your last kiss, or one day maybe being able to share what images remain only in my mind. I will thank g-d for them still being so clear to this day.  

Tomorrow Tzvi and I head to Vegas for his hockey tournament. I hope you come to visit, maybe help them out a bit, but really come to say "hi", especially Friday. Maybe another obvious visit like Monday? I would try not to be greedy, but since you gave a mouse a cookie. At the very least I would settle for strength not to be on edge and to be at peace Friday. Maybe you can share that bear strength of yours for the next few days!?

Anyway, little bear. I love you beyond words. I miss you even more. I appreciate every apparent and non-apparent sign you have sent my way over the last almost 3 years...please don't ever stop.

Until next time.

Love always, 

Ema