2022

Two years ago today was the day Sonzee's stone was unveiled for the first time. It was the day I last read a letter to her out loud, it was this letter. Two years ago today was the last day of the last year she was ever part of.  As the clock changes from tonight to tomorrow, from 2022 to 2023, it will complete the 2nd full year without her ever physically being part of it. Tomorrow will be the start of the 3rd. In less than a month, 3 full years will have passed without her here. I wish the time passing by would get easier to process, and easier to manage, but it hasn't. 

2021 was a year filled with many firsts, but firsts in the land of grief I have realized only give way to the 2nds (and eventually the 3rd's), and the main difference between them I have learned is that the denial and the fog have vanished. It is still difficult to comprehend that this was the 2nd complete year I never stepped off the elevator at PCH and resided in any rooms on the 8th floor. It doesn't quite make sense that I haven't made the "please don't kill my daughter" cookies in over 2 years and brought them to Interventional Radiology on the 4th floor. I no longer would know the residents or interns, so many changes in just 2 years, but some things still remain the exact same.

2022 was the year I finished serving on the PCH ambulatory/inpatient outpatient PFAC, a position I took right before she died. After completing my 3rd term I realize it was time that I left that part of my life in the past. I no longer know the ins and outs of PCH. I no longer frequent any of the departments in the same manner. 2022 was the year I stated to accept that I no longer fit in that world. 

2022 was the first year I went more than days, weeks, and even at times, months from visiting Sonzee's grave. It became a place that honestly saddens me more than brings me the peace it once brought. It was the first year coloring her rocks happened at an infrequent rate, and somewhere along the way, even the monthly rocks stopped being made. 

2022 was the year that our family started to settle into newness, but for me, with a constant nagging at the back of my mind of how it would have been different with Sonzee here. It was also the year that I wish she would have visited me more. (Although I have no real idea how much she actually has been around) It was the year we settled into our new home, one that Sonzee never knew or lived in.  It is a home that would never have worked had she been alive still. I have often found myself wondering if there would have ever been a way to make it work, would we have ever decided to leave our first home had she never died? 

2022 was the year that I started to truly comprehend that grief is going to last forever. There is no getting over it. There is no moving on. Honestly, there is hardly any moving forward, but yet there is, at a significantly slow turtle pace. 2022 was still a tough year emotionally and physically.

In 2022 I found the most represented stage of grief was anger. I am still angry with her initial diagnosis, and I am certainly still angry she isn't here. I am at peace knowing or rather, assuming, that she is free from the pain, suffering, and horribly challenging life she was forced to live. Despite her assumed new found freedom, I am still upset and angry that this was the hand of cards our family was dealt. 

2022 didn't help me answer the question of how many children I have, nor did it help me to be ok actively parenting 4 rather than the 5 children I should be. I wish I could say that 2022 was the year I was ok with families of 5 or more children, but to be honest, I am still envious of what they have.

2022 was the year that allowed myelf to experience grief in all of its glory. It was the year I started to admit to others that sometimes medication is needed to be able to function after the loss of a child. It is the year I started to be less ashamed that I need that type of help. I hope acknowledging this myself will be a source of comfort and strength in others needing the same validation. 

This year was horribly painful in the world of grief. It was a long year that flew by quicker than I would have liked but yet not fast enough so that I can see Sonzee again. I have no idea what the nex year will bring in terms of grief and life after Sonzee. I wish I could end with some amazing quote that was inspirational, but all I have got is the words from Cord Overstreet...

I swear to love you all my life

Hold on, I still need you

I don't wanna let go

I know I'm not that strong

 

151 weeks and 1 day

Dear Sonzee, 

There are 4 more days left of 2022. It is hard to comprehend, but I will wait to share my thoughts on that in my end-of-the-year blog. For tonight, I will write my last weekly blog of 2022. This week was filled with the completion of Chanukah. The start of winter break for me as well as your siblings.  This week I went to watch aba play hockey which is something I have not done in years.  I have to be honest, it was one of the slowest games I have had to sit through in a long time.  Think back to the few Titans' games you watched circa his first year playing travel hockey when he was just a mite. (You might have even seized through a majority of them because they were oh-so-eventful).  Really aba was good, but he was playing with men who were significantly older. I give them mad props for playing club hockey at their age, but I won't be there to cheer anyone again any time soon. 

This week we took your siblings to the world's biggest bounce house. It was fun, but it was one of those one-time sorts of deals, (we won't be doing it again). This week your siblings also got their first phones. They aren't thrilled because they can literally only make phone calls and text and they have no social media, internet, or games.  We got them primarily because they have GPS and they all walk to school now, and not typically together. I will have more peace of mind knowing I can track them and that they have a way to call if g-d forbid something should happen. Additionally, with Meena's new gymnastics schedule and Tzvi always at hockey practice, it is good for them to have a way to get a hold of us. (Like for those times aba drives away with Tzvi's hockey gear, but without him). 

I have been looking at your pictures this last week. Overall they make me smile. Sometimes they even transport me back to that actual time or day.  I never wish I didn't take as many videos or pictures as I did. In fact, I wish I was as good at it with your siblings.  Still, the only regret of my life is not having any of me with you right after you died. As we get closer to the exact date I know it will be something that loudly haunts me since it sits quietly nagging me throughout the year as it is.  The one positive is that my primary advice to anyone who enters into hospice is to take as many pictures and videos as possible.  They don't have to ever look at them but they will have them just in case they want to. It eliminates the potential regret.

This week for 2 days of my break, before your siblings began theirs, it was the first time since you died that I had no real reason to get out of bed. I stayed in bed in the morning on both days. By day 2 aba asked me if I was just enjoying my break and staying in bed because I could or if I was depressed. I admitted the truth (while attempting to hide the tears that filled my eyes). It was a little bit of column A and column B. I then asked him how he could not be. We are almost done with 3 complete years without you here and I still feel like it is day #1 all over again. I have mastered my ability to hide it the majority of the time. I force myself on the regular to play the part of typical I have not buried a child after living close to 5 years as a special needs parent mom, but now with Noam being old enough to do things on his own, and with us living so close to school, I have to admit, it was nice to allow myself to not get out of bed.  It is only because of your siblings and working that I am even able to fake things as much as I do.  Anyway, if you ever doubt that I am over you not being here, or think that I have moved on, don't worry little bear, it hasn't happened and it won't ever happen.

Until next time.

Love always, 

Ema

150 weeks

Dear Sonzee, 

Today marked 150 weeks. We are just 6 weeks away from the 8th of Shvat and only 6 weeks and 4 days until your English deathaversary. I dislike this time of year. Today was the first day of Channukah and the second night. This is the worst holiday for me without you. I waited until the very last minute (think right before candles were lit) Sunday to finally buy the Channuka pajamas. Chanukah was the very last holiday you had with us. We took the very last holiday cousin picture. The last one where you would all would wear matching pajamas. This was the first season that I decorated as much as I used to. It had only been Thanksgiving and now Channukah, but I think it all caught up with me. All my attempts at subconsciously bringing back normal. Sometimes I want to slap myself in the face for attempting the impossible, for being so dumb. It can't ever work. Unless you miraculously appear (healthy and whole). (*But side note, please don't just do that, it might cause me to have a heart attack, so a warning would be nice).

This last week we had Tzvi's hockey holiday party. It was so much fun. I absolutely love the families on his team. I wish it could stay this way every year, but that isn't how this sport works. This last week Meena was officially placed on Team for gymnastics after winter break. She will be going into training level 4. The idea would be for her to compete in the fall in level 4, but if she doesn't have it mastered the fallback will be level 3. She and I were both shocked at the placement. I am in awe of her talent and her dedication. I have to make a phone call to her summer bestie's mom to discuss what this means...just know it's coming if you're reading this.  But she and Tzvi will now both have to come back from New York earlier than Noam, Laeya, and I. When I said to her that we had to discuss summer, she immediately said, "what, that I have to come home in August?" When I said yes, she told me that she knew that and she was ok with it. So now I will officially be a gymnastics mom and a hockey mom. I just pray the travel/competition weekends don't overlap (much).

This last week your oldest sister aced her math test! She has been working so hard to do that. We are so proud of her! In less than a month, she will be a teenager. (Deep down her birthday is a double edge sword for me. It was the day you officially started to die). Even though deep down I know it was months prior, that was the day she turned 10 and you spiked a 103+ fever. The day before, on the 17th I received your 5th birthday shirt along with Laeya's 10th. I reluctantly bought yours despite my dream/premonition that I bought you the shirt and you died. That dream haunted me for months, but what were the odds that it was more than a dream? We had just met with palliative care and social work on the 15th and they struggled to believe my gut, so I started to doubt it, I started to really believe you would live to turn 5, so I bought that dumb pink shirt with the glitter purple 5 and it arrived on the 17th and sat on my desk and taunted me for the rest of your life.

I don't really understand how it is about to be 3 complete years without you. I don't understand how you would be turning 8. I don't understand any of it. I still don't understand why you weren't born with a complete CDKL5 gene and why you were so affected by your simple mutation. One little spelling error that completely derailed everything; your life, our lives, everything. I have always tried to never question why you or why us...but I simply just don't understand and I guess I am not religious enough to be ok with not having the answers, at least not this week...probably not in my lifetime if I am honest. 

Missing you just gets harder. The pain gets worse. Time heals nothing, it just gives you the opportunity to learn about your audience in better ways. It gives you the ability to read the room a bit more, and figure out who can and cannot handle a loss of a child that isn't theirs but that is too hard or awkward for them to talk about. Time gives the ability to understand that there are just some things that others are (thankfully) never able to comprehend, and no matter what they won't ever be able to relate to me. Time has taught me that society has unspoken lengths of time that grieving is "allowed" and that supports are given. Sooner, rather than later, the once awkward question of "how are you" is no longer asked. Time allows everyone to move forward even though I am forever stuck without you.

I wish so much I could peek into wherever you are. Please come and visit! I miss you lots and love you more!  

I hope you are having a wonderful Channukah!

Until next time baby girl!

Love always, 

Ema

148 weeks and 149 weeks 2 days and 10 hours

Dear Sonzee, 

So many weeks this year have flown by extra quickly. Every Monday I tell myself I need to write to you and then time just moves on. Over the last close to 2 months or so I started to work out. It isn't anything super exciting, some walks and workout sessions. Still, it comes after work all day, chauffeuring your siblings all over the valley for their activities, and cooking dinner. After all of that, the amount of energy it takes to will me to the computer and then delve into the emotion of grief is just way too heavy and I find myself saying "I will do it tomorrow".

Well, "tomorrow" in this case turned into close to 2 weeks. To be honest, I would have pushed it off again, but there is the whole guilt component, and tonight that weighed a bit more. So I will force myself to face your absence tonight by writing the letter you deserve.

This week Laeya, Noam, and aba were finally all healthy and recovered from their bouts with (what we assume) was the flu. Noam was able to return to school on Friday last week after being out for a week. Aba was out the week prior to Noam's start and Laeya had it the week before, just 2 days before aba got taken down. Tzvi we aren't sure about him, because after his tournament he had one symptom, but after keeping him home from school for a day he was good to go. Meena and I are the only ones who seemed to have missed that boat-but I am cautiously optimistic about how long we will be able to hold out.  It is literally everywhere. It is now this week at FBC and luckily I hop between campuses, so far I seem to be at the opposite one when the kiddos show up with fevers and are sent home. 

2 Sundays ago Tzvi had his last league game for 2022. They won! It was a great game. Nurse Paige came. Every time she comes, Tzvi scores, so she needs to start coming to every game!  I love seeing her. I miss seeing her every day though. I am just happy she is still in our lives. 

Last week we were excepted to host street cleanups on a mile stretch on Bethany Home Road between 7th and 16th streets and after the first cleanup they will put up a sign in your honor!  I am so excited for that to happen. I am just waiting on Auntie A to make the flyer to post! (*hint*hint* Auntie A). I am thinking about pairing it with a PEMU pajama drive.  I have done next to no fundraising this year. In fact, I sort of just let the non-profit component of your organization take a back seat.  Again, this whole needing energy thing.

Meena made Channukah artwork and I found it in her lunchbox folded up. She didn't have your name. It makes me so sad that you are missing from the artwork, but it is her journey with grief and if she leaves you out of it, that is her decision. At dinner, she saw it on the door taped up and asked how it got there. I told her I put it up, and then Tzvi mentioned how she didn't have your name. She said, "ya I did it on purpose because she isn't here". Then Tzvi said, "but she is your sister still". I then said she could do what she wants.  I just always secretly love when Tzvi says things like he did because he doesn't speak about his feelings regarding you often. He once said it was just too painful and hard so why would he want to. It is a valid point. I am not upset with Meena at all, it just makes me sad that this is how it is. But, she did paint you more rocks that I need to remember to bring to you!

Anyway my love. I miss you a lot!  Sorry that I am so behind with my letters!  

Until next time.

Love always, 

Ema

147 weeks and 4 days

Dear Sonzee,

Today is 147 weeks and 4 days (at 1:08pm AZ time). On Monday, which also was 147 weeks your baby brother turned 5. It was just like every other day since you left- filled with tears and smiles…more smiles though than tears, and a mixture of thoughts. I managed to pull myself together enough (or maybe it was the circumstances) to set up for his birthday party and host it in the backyard. He and his friends had a blast! I chuckled when I saw he wore his Rawr I am 4 shirt. Next year I will be able to buy him the 6 shirt (I should be, I hope- since my struggles have been about the 5th birthday). 

Last weekend your brother had another hockey tournament. They didn’t go 0-4 or 4-0…and for once they actually did a dead even balance of 2-2. It’s a struggle this season for sure, but honestly, it’s just a game and some years the team he is on is strong and other times it just is what it is. It’s all about having fun in the end and for your oldest brother, he truly loves being on the ice no matter what team he is on. 

Last week Uncle, Hay-Hay, and baby Isla spent the week in Phoenix. For some reason I’m seriously obsessed with baby Isla, I don’t know why. Maybe it is because she’s a squishy adorable baby? Maybe it is because in some way she reminds me of you? Maybe it’s because I LOVE babies? Whatever the reason, I am just thankful I don’t have an ounce of resentment over her being healthy- which sounds horrible to say- but I was nervous before she was born how I would feel. In the end, I cannot see her enough! I cannot wait for the summer in NY so I can hang with her close to weekly again!!! She’s the yummiest, and she just turned 6 months old and is sitting like a champ! She used a lot of your stuff while she was here last week and that made me smile! 

Savta has also been here since last week. She relocated Noam to our bedroom- but then aba got sick (probably the “allergies” that he gave you the summer of 2019 that didn’t help your downward trajectory and turned out to be adenovirus) so he moved with me into Meena’s room. Now Noam has fallen and I cleaned the sheets on both of Meena’s beds and her and I pray we don’t get taken down next! This one is a dousy for sure!

Today, for the first time in forever, I have sat at your grave for going on close to 2 hours. Painting rocks and now writing you this letter. I did this every day for 6 months straight after you died. Then would do it often through the first year until the site of your stone broke me enough that I couldn’t come back to sit with you. I needed a reset today and since I didn’t want to be in the house with the sick boys I said to myself, oh I can drink my coffee outside and then said- wait, I can paint rocks, and write a letter to Sonzee while sitting on her bench! So here I am and I couldn’t be happier with my decision! I made you a bunch of new rocks. 3 hockey sister ones to represent the seasons you haven’t gotten to wear sparkly boots or a hockey sister sweatshirt, and a thanksgiving one. I have more I need to do for you, but that took a lot of energy for today. 

It’s weird what causes me to be drained in terms of grief. Sometimes it is just thinking about you, sometimes it is visiting you and sometimes it’s just random. I can’t explain the fatigue it causes, but it makes me feel like I could sleep for years on end. Grief on the body sucks! 

Anyway baby girl! I hope you are staying healthy and doing well. Come and visit when you can! 

I love and miss you lots!

Until next time.

Love always,

Ema