8 Shvat

Dear Sonzee, 

Aba just came home from leading minyan at shul, and I just lit your candle(s). I bought one yummy one that smells of mango because I am just not a fan of apple burning and that is what every red candle is. About a month ago HopeKids had an event for bereaved mothers where I made a candle for you, it smells of wine and I cannot remember what else. I intended to pick it up before today, but that didn't happen. They haven't even called to remind me, so I can guess someone warned them that bereaved moms avoid a lot of things. So today I walked to CVS, smelled all the candles, and picked the one that made me feel the happiest.  Then after I got home and saw the 2 yahrtzeit candle holders sitting empty I had a mild panic attack and proceeded to Instacart 4 more candles. They arrived in perfect time and so now 3 candles and 2 battery small candles are flickering by the picture window in the kitchen with pictures of you.

These double anniversary dates suck the air out of my entire body, and the ability to hold back tears becomes a daunting task to manage over a 5 day period. My ability to care about anything is close to non-existent and I want to take people by the shoulders when they focus on the benign minuscule dumb things they consider important and tell them they clearly need something major to happen in their lives if they think XY&Z is that important.  I pray for all of the hockey teams we play Friday, I am not sure coffee and lollipops are going to keep me in check should someone actually say something dumb about 11-year-olds playing hockey and commenting on the refereeing...PERSPECTIVE is what I want to shout!

Today marks 3 years on the Hebrew calendar. 3 years ago on this Hebrew date, you decided it was the day for you to go to Gan Eden. I remember I chuckled when I saw how it was also my Hebrew birthday, you would be sassy like that. I am just thankful that you didn't choose Laeya's, that was my fear the entire time you were in Hospice care. Maybe it was your way of bringing this birthday onto my mind since I never focused on it all that much? I have now known when it has fallen for the last 3 years, so kudos to you, but other than that, it is really just your day.

What have you been up to for the last 3 years? Do you focus on this date more than the English one? Do you celebrate with a joyous celebration? Do you ignore this date altogether? I wish I knew. I wish I had some insight. It is hard to believe I haven't been part of your day-to-day life for the last 3 years. I would ask how that can even make sense, but I know the answer, it doesn't. A mother shouldn't be without her child for any amount of time. A mother should know what is going on, especially since you are only 7. 

In case you are wondering, my heart is still just as broken since you left. Actually, that is not entirely true, it is more broken now that I fully understand that it won't ever heal itself. The years will continue to go by, but my heart and really the ability to fully live life left with you 3 years ago. I hope you are flying free and living it up wherever you are! I hope you are at peace and free of pain and all the suffering you had to endure here. I hope you know you are thought about every second of every day and that you are still forever loved here. I hope you know just how much you are missed!

Anyway, my love, I miss you and love you! Please come and visit!

Until next time.

Love always, 

Ema

155 weeks

Dear Sonzee,

Today is the last Monday before your 3 year Jewish deathaversary. The Friday after will be your English date, which means that next weeks letter will be summarizing the last week of the 3rd year without you here. I will try to focus on today, the 155th Monday since you were last in my arms.

This last week was one of those jumbled crazy couldn’t get my act together sort of weeks. That tends to happen after a shortened work week when we don’t have school or work on a Monday, which was exactly what last week was. We drove back from Tzvi’s hockey tournament Monday after his last game. They came in 3rd place but no medals were given out. I got him a shirt and a sweatshirt though so he didn’t leave empty handed. He scored 2 times last weekend and got some assists. He also had 2 penalties (in one game) and one of them was actually related to his hockey play and the other was because he was angry that another player threw him into the goal net and then skated off so he retaliated. I don’t ever know if I should support his ability to defend and stand up for himself or tell him that makes no sense. But alas, he is 11 and it doesn’t matter what I tell him.

Tuesday-Thursday was back to the usual grind, insane evening sports and activity schedule for your siblings and Laeya turned 13 on Wednesday. I got new yard signs for the front so I don’t have to keep paying Card my yard and she loved it. It’s insane she is a teenager. It’s insane she turned 10 when you started to die. 

Shabbas I was just so blah and exhausted from life and grief that I sat on the couch and slept or read all day. At night I ended up doing some needle point while I watched the girls play Nintendo and aba and tzvi went to a Suns game. I was surprised with how much I slept and rested that I still was able to go to sleep at a normal hour. 

Sunday we all got up to take Noam to his last little howlers practice. Tzvi had a game initially slotted but it was moved to another date because the team was in a tournament. We then went to the Fitchew’s (they were the ones who came to help clean your street) and Mr, Richard taught us about gun safety and we got to go shooting. For me it was like skydiving, I’ve done it, but I have no desire to do it again, unlike everyone else in the house who wants their own gun.

Anyway baby girl. That leads me to today. I miss you a lot and wish I could see you!

Come and visit.

Until next time,

Love always,

Ema 

Dear Sonzee: January 18, 2020

Dear Sonzee, 

3 years ago today was Shabbat. You had spiked a fever and aba and I spent the day doing what we did quite often when it came to your care during that period, arguing over the plan.  The initial plan we followed when you first got your central line and ran a fever over 100.4 was a fast (4 min 21 seconds) ride to PCH ED. The secondary developed plan initiated by myself was no more hospitals. It wasn't a decision that was implemented lightly and while it was something that aba was not fully on board with, when you didn't need to go to the ED, he didn't argue the plan. But then January 18, 2020, happened.

The night before when you spiked your fever I casually ignored it. I figured aba wouldn't notice anyway, he isn't the one who usually identifies fevers until I mention something and then he attacks with the thermometer. I personally never need one. When he said you were hot I said it didn't matter because I was not taking you to the hospital.  There were multiple reasons for that, the first being that deep down I knew you weren't sick. The second reason was that I knew if I took you to the hospital they were going to do numerous tests, cause you discomfort, make you upset, and possibly kill you (or speed it up knowing what we know now). The third was because it was your sister's 10th birthday and due to the above I wasn't going to miss her special day. 

When you woke up with a fever Saturday the argument continued, except the one thing that aba always did was say that he felt should be done, but he wasn't the one who was going to be taking you. If he really wanted you to go, he would have taken you on Shabbat, but since he wasn't doing that, deep down I knew I could stand my ground. So standing my ground I did, but it would get more difficult the more signs you began to show that something was definitely not right. 

That night we kept you away from her surprise sleepover party just in case you had something contagious. We had told all of her friends that you had a fever in case their parents didn't want them to be exposed. Tonight I wouldn't share any of the pictures I took of you because I knew if it were me I wouldn't want those pictures posted. 

While I do believe that you were thankful for my choices on your behalf, there are random moments where I doubt myself and think about "what if". I remind myself your poor little body was exhausted and you were just a shell of the little girl you had been. My only goal for your life was for you to not suffer...I hope you have finally found your peace.

Until next time.

Love always, 

Ema

January 17, 2020

 January 17, 2020....

The 17th was the night Sonzee felt hot... It was Shabbat and I didn’t want to know what her temperature was... I figured we could ignore it... if we knew with her central line that it was above 100.4 then there would be the guilt that “we had” to go to the hospital... but we also knew we weren’t going to do any extreme interventions....we also had history on our side of her not actually being septic with her central line and we knew she had been potentially exposed to the flu at school so the hospital wouldn’t have done anything except tons of tests to confirm or deny that theory....  

We went with the preliminary diagnosis of the flu ourselves... except we would figure out within 48 hours no other flu like symptoms would ever present.....

January 17, 2021-2023

I should’ve known things were really off... but then again, I did. I had known for months. It was why I kept taking pictures and videos - to “prove” to someone, anyone, that she wasn’t herself.  

Again, what good would it have done to have someone agree with me? They would have suggested taking her to the hospital... I had already decided NO... Sam was not exactly on board but we always agreed on our hardline and we knew in certain situations it would come to crossing that line, so it was best to avoid that hard line if we knew it was on the horizon. So the official beginning of her end was on our doorsteps.

The next 17 days would be the worst days of our lives. I sometimes wonder how our marriage survived her life and her death and especially those 17 days…I sometimes wonder that about myself as well. I would spend the next week fiercely advocating on her behalf like I had her entire life, but in a completely different manner…it’s something I am proud of myself over to this day. I have zero regrets, and in the end, anyone who “doubted” me then, has praised me since…but the most important thing is that we honored her wishes, we did what was best for her, and I know deep down in my soul, we did exactly what she wanted.

153 weeks

Dear Sonzee, 

Today marks 153 weeks. In three more weeks, it will mark 3 full years of Mondays (and will be your Hebrew deathaversary) since you left my arms. I cannot figure out if this year is more manageable than last year, or the year before. The jury is still out because grief has been different each of the years, but more of that in 3 weeks.

This last week I have been making sure to sit with my grief a bit each day and write about my feelings. I have completed 9 days out of my lofty goal of 365. Truthfully, there is so much I could say and the emotions vary from second to second. I don't know my exact purpose, but I hope it gives others a little insight into grief. I hope it helps other grievers to take a moment and honor their grief as well. For me, I don't know what I expect for it to do, but maybe acknowledging my grief will remove my constant desire to hide it from others because I don't want them to see how difficult it is, or because deep down I am afraid of where the acknowledgment will take me. Who knows, maybe after acknowledging my feelings about your death, I will be ready for you to visit me!?

This last week Meena had her first week of being on the Team. The adjustment for this competitive gymnastics/hockey life has been real let me tell you. Her official schedule is 4 hours MWF, because of Shabbat we sent her to right before candle lighting. It was rough in the Zaila house last week that is for sure. Between your brother's late hockey nights and her gymnastics, it is a bit insane. So far tonight things are turning out better, no tears, but none of your big siblings are asleep and it is 10:30pm). The little man was sent to bubbies so he has been asleep for over 3 hours and at least he gets to go to sleep at a normal bedtime one time a week. 

Anyway baby girl. I miss you a lot. I love you more. I wish I could see what you are up to.

Until next time.

Love always, 

Ema

We head to California in 3 days for the hockey tournament, hope you come to visit. 

Exhaustion: Day #5 of 365 days of acknowledging my grief

Today is the 5th day of January in 2023. 3 years ago on January 5 2020 I was exhausted. Sam was out of town with our son in Florida to honor the one month marking from his dad dieing. I was parenting the other 4 essentially alone except for the amazing nurse Paige. Our oldest was graduating from the little howlers hockey program and she had her final games at the same rink the Coyotes played. Sonzee's nurse was there during the daytime hours, but at night (as usual) I was on "Sonzee duty". 

On the 5th of January in 2020, it had been 4 years 9 months and a few weeks that I had been on "Sonzee duty". Watching your child seize multiple times a day is emotionally exhausting. Taking care of medical needs of a medically fragile 4 year old that was being fed through her intestines and a central line is exhausting. Parenting children (and 5 of them) is exhausting. Cooking and taking care of the house; it is all exhausting. 

On January 24, 2020 hospice formally admitted Sonzee into their care. It was more of a moral support, access to periodic nursing visits and medication sort of deal. The actual care of her I maintained, like I had for her entire life so far. Watching your child die is exhausting on the emotional, mental, and physical levels. Trying to make arrangements on top of that is even more exhausting. Managing round the clock care and not wanting to spend too much time asleep is exhausting.

Despite all of the exhaustion I faced in my life, on February 3, 2020 a new form of exhaustion took over. One that I hope the majority of you reading this never have to try to understand. It isn't one that is fixable with caffeine or sleep. It isn't one that is fixable by sitting down, taking a rest, or any other assistive measure. Grief exhuaustion is a type of exhaustion that is difficult to even explain. It is soul sucking. It is physically and emotionally draining. It is a lingering cloud above you that is constantly raining around you and causes you to drown at the same time. It is a black hole that doesn't have the slightest light to even attempt to work your way out of. It is the worst possible combination of sadness and heaviness that there is, impossible to manage, and much like CDKL5 or any other rare disease, it is impossible to cure.

January 4, 2020: Day #4 of 365 days of acknowledging my grief

The last January 4th of her life. I am unsure what to even say about those words. 

Today was one of those days in grief where I was able to talk about her literally all day, even look at pictures of the last few weeks of her life, and not flinch. That doesn't say or mean much because 4 minutes from now I could be a puddle of tears from writing this post or looking at the picture above. That is fun part of living with grief. 

This evening I was asked the ages of the kids, I honestly couldn't even figure out her age. In less than a month it will be 3 years since her death, and her birthday being a week after makes it the 4th birthday (we will honor without her here), meaning she should be turning 8. But in my mind, she will always be 4. A lot of bereaved moms refer to their child as their "forever age", I have never been a fan of doing that. As her 8th birthday and 4th without me inches closer, it's a punch to my gut that it doesn't matter how many years pass by, she will forever and always be forever 4. Stating that fact makes her absence and death more difficult to process. Probably the subconscious reason I have never been a fan of the saying.  

God, keep my head above water
Don't let me drown, it gets harder

152 weeks and 1 day (2 years 11 months)

Dear Sonzee, 

Yesterday was 152 weeks; today is 2 years and 11 months since you left us. This last week was winter break for your siblings and me. We opted to stay home since we have so much travel headed our way with hockey over the next month. Ironically (not sure that is even the correct word) the tournament we will be headed to next week (on my English birthday) is the location of the first tournament we went to 2.5 weeks after you died. I remember how awkward it was for people, and for us. I questioned if we should have gone, but ultimately the answer was to keep your siblings' lives as normal as possible. We got to see Mimi and her family, something I am unsure if we can work out again this trip, but I hope we can make something happen.

The tournament after happens to be on your deathaversary, but we can discuss that as it comes closer. For next weekend I am hoping it goes easily. I can still remember the rink and the park nearby. I can remember the days and images of the weekend. Your siblings loved playing at the park. I remember feeling numb to everything, and now the numbness has disappeared.

This last week over the break we did a lot of hanging out at home. Meena had a break from gymnastics, but Tzvi despite not having his team practices was naturally at the rink. It was amazing for me to sleep in every morning and truly relax. Saturday night was new years eve and aba and I spent it going to friends and losing in poker while eating pizza. Sunday night bubbie and pop-pop took 3 of your siblings and Auntie A took one and aba and I had our first night in forever where we could go out to dinner and watch movies we wanted to. (They were a bust, to be honest, but we tried). 

We managed to raise over $1,000 to purchase more PEMU pajamas and I am so excited! My dream is to be able to mention the "PEMU PJ closet" on the special needs support groups and have families be able to pick up pajamas before they go (which has happened twice already by word of mouth). 

Anyway babygirl, I love and miss you!!

Hope you have an amazing new year wherever you are!!

Until next time. 

Love always, 

Ema

January 3, 2019: Day 3 of 365 days of acknowledging my grief

Today I spent the day at my sister's apartment helping her organize it. My philosophy was that you cannot manage your life if your house isn't organized. Maybe that is what I tell myself to attempt some sort of control over life. I should really grasp the reality of me having no control at this point in my life, but alas, it doesn't change my attempts at it. My brain clearly forgets that despite my organizational skills I had zero control over evading Sonzee's death. I guess I at least get an A for the attempt.

While I was organizing she had music playing and this one song came on that I had never heard and the words called out to me. The second time it came on I mentioned something to her and she asked if I wanted it to be turned off, I said no. I knew immediately it was going to be added to my "Sonzee blogging" playlist.   

January 3, 2019: A peacefully sleeping Sonzee. I wonder if I counted all of my pictures how many of them are from when she was asleep compared to her being awake. I wonder if this was just a peaceful Sonze sleep or if she was post-ictal entering a deep sleep until she would be woken by another vicious seizure. I know I could go back in time and find a Facebook post to pair with the picture, but I am not sure I would want to know. Sometimes it is better on this journey to just look at the picture and focus on nothing but her. Just focus on how I loved to take pictures of her asleep, she was always so peaceful. I hope wherever she is, she is forever resting in this manner. It would be too painful to consider an alternative.

Since you've been gone I've had to find

Different ways to grieve

There's days that I don't even want it on my mind

But tonight I'm weak 

So, I'm gonna pull out pictures, ones with you in 'em
Laugh and cry a little while reminiscing
By myself
I can't help
That all I think about is
How you were taken way too soon
It ain't the same here without you
I gotta say, missing you comes in waves
And tonight I'm drowning

January 2, 2020: Day 2 of 365 days of acknowledging my grief

January 2, 2020:

This was the last January 2 she ever lived. Here she was sleeping. As she had been doing so much more during her last 6 months. Another picture that was taken for "evidence". As if all of the mounting evidence did anything different. Over the years all they do is confirm the gut feeling I had, at the time, they offered me little support 

13 days from this picture her palliative care doctor (whom we loved) would sit in a room with a social worker, our beloved nurse Paige and both Sam and I, and tell us that she would switch Sonzee's status to hospice BUT she didn't think that she was going to be on deaths doorstep within the next 6 months. I left feeling mentally/emotionally defeated because my gut was convinced during her entire life she wasn't living to turn five but decided I would give in and order the (damn) pink birthday shirt with the purple glitter 5.

15 days from this picture the shirt would be placed on my desk.

16 days from this picture she would spike a fever on her biggest sister's 10th birthday. 

18 days from this picture I would question if her fever was actually due to a virus or cold.

19 days from this picture we ruled out the flu and my brain flipped a switch and I realized she was actively dying. 

22 days from this picture she would be admitted to hospice. 

24 days from this picture I'd have nurse Paige put the stupid "5" shirt on her for a makeshift birthday celebration that I had been convinced to throw for her because deep down everyone knew she wasn't making it to her actual birthday. 

31 days from this picture she would breathe her last breath. 

And I wish you, were here
So far away from where you are
These miles have torn us worlds apart
And I miss you
Yeah, I miss you
And I wish you, were here

January 1, 2019: Day 1 of 365 days of acknowledging my grief

January 1, 2019:

There are no pictures of Sonzee during her very last January 1st, which would have been in 2020. I am sure it has to do with how sick she was looking. The main reasons I took pictures (what ended up being) the last 6 months of her life were simply to attempt to prove to whoever would listen to me that she wasn't looking healthy. I ask myself daily what good knowing any earlier would have done, we could never prevent the inevitable, she was dying at some point during our lives, and I knew this.

There is a video on January 1, 2020, where her youngest brother is putting on her grandfather's shoes at my parents' house.  Sonzee is in the background, in her pjs, rolling around on the floor. It isn't a video focused on her so there are no closeups of her face, just her doing her thing.

Her very last January 1st when she was healthy she spent doing what she loved, swimming (in a bathtub-most probably because it was too cold outside to carry her back from her swim spa). I am so happy I have pictures of her content. Her best quality of life was definitely between December 2018 and June 2019, and I am thankful I have so many videos and pictures that capture her contentness.