55 weeks

Dear Sonzee, 

Here we meet again. Another week, another Monday without you here. I will admit that although nothing has changed as far as you being gone over the past month, it has been a bit of a relief to not have any significant days surrounding you this last week.  I feel as if I can go back to breathing.  It certainly isn't the way it once was, but it is certainly much improved from the way it had been with all of your anniversary and birthday dates.  I am starting to slowly emerge from the really deep pit onto a little ledge in the pit.  It isn't much of an improvement, but it feels significant for my ability to function so there is that.

Today marks the final Monday of 2021. It also marks another round of 19 days of February you haven't been part of for 2 years.  There is just so much you have missed and are missing here, and meanwhile, I am missing watching all of your firsts. This whole arrangement honestly sucks.  I have been trying to read inspirational religious books to somehow attempt to make sense or cushion the whole concept that there is some significant reason this all had to occur that I am just not privy to yet.  It isn't exactly working.  Maybe it is my fault that my belief isn't where it should be or needs to be because I can't be okay with that, but at the same time, it isn't for a lack of trying.  I just can't blindly accept that as a satisfactory answer.  Maybe one day?  Maybe the same day I get to see you again and all the blanks are filled in?

This week at swim it was the first time Noam was so excited to go in the pool.  He kept asking if it was his turn the entire time Meena and Tzvi were swimming. On that note, yes, Tzvi is back to swimming.  Everyone else was swimming on the same night and with no hockey at that time I said, "in you go".  Meena and Tzvi are actually in the same class, they seem to enjoy swimming together.  Well, I think he is enjoying nagging Meena the entire time, but regardless, for me, it is 1 less hour I have to hear it.

I am unsure if you noticed, but I set up a couple of new baskets for you so the rocks aren't all over the place.  I can't completely figure out how exactly I want it, so I feel like it will be this ever-changing process, but the baskets make it feel less cluttery.  There was apparently an issue with your bench that required it to be sent back to the monument company, but Mr. Ira assured me it should be back and fixed by the end of this week.  I am really interested in knowing what exactly the issue was, but I am not sure he will give me that information. I am sure it is to prevent me from getting upset, and he is fixing whatever it is, so I am just eager to see it (but I really hope it isn't an issue with being able to hold me up while I sit...please don't laugh too hard if it is and I cause it to break in half).  Your yahrtzeit block is finally up and the correct red-colored candle holder is now in place.  I verified it Thursday since the first time it was blue.

Anyway my little bear.  I miss you a lot, as Noam would say when I ask him how much I love him, "too much". To which I will reply the same, "it can't ever be too much".  Be safe, and have fun.  Come and visit me!

Until next week.

Love always, 

Ema

54 weeks

Dear Sonzee, 

The weeks are flying by in a manner that feels quicker than record time, I feel like there are just seconds now between my letters to you.  This week we remembered your birthday. I am still at a loss for the best word to describe what February 11 has now become.  We didn't celebrate it, we didn't honor it, we just thought about you and what the day once was, so remembered seems to be the most fitting word.  

Meena went away for her birthday weekend with bubbie and poppop finally.  They went to Great Wolf Lodge and had a great time.  I am glad she wasn't phased that the last time we all were there, so were you.  I wonder if she really even thought about that.  I am torn on if that hurts me or not.  On the one hand, I am so thankful your siblings can move forward, on the other, I hate that they are.  I know to suggest they are isn't exactly the fairest statement to make, because I know you are always with them, but still, it seems so much easier for them.  (As it really should be, but yet it sucks).

Aba has given me the freedom to reorganize the kitchen, so it took me until today to realize the labels on the bottom right shelf of the fridge both still say "Sonzee TPN/Lipids" and "Sonzee Medications/Nurse Paige".  My heart hurt when I read the words and realized why nothing has found its permanent home on that shelf in over a year.  I am fairly certain, like all of your containers being used in Bear Pines, the wording won't ever be erased. (I chuckle when I think what someone will say when/if they flip the instant coffee holder around to see it say "alcohol wipes", or when they read the container drawers that have your TPN storage information written on the front but not the actual contents of what is now being held.) Grief is just weird like that.  I think I would cry for hours if the labels were ever removed, it's bad enough you are already gone.

On that note, I feel like I am starting to truly understand the feelings those in the grief group stated a year ago about feeling like their child would be forgotten.  I didn't understand what they meant.  I remember during one of the meetings I said I didn't have a fear of that happening, but it's funny how 54 weeks can grant you a different perspective.  You won't ever be forgotten, that is impossible, but the brain sometimes works in quirky ways, as does the world.  Your physical presence is gone, so much of you has left our house, it is us who keeps your essence here, but we go out as a family of 6, and you aren't there.  Your seat is absent from the car.  All these physical reminders, gone, and so sometimes I want to wear a shirt that says "There should be another", "Family of 7", "Mom of 3 girls and 2 boys".  I want to make an announcement that you were here so everyone who doesn't know will know, and so I don't have those moments where I get smacked in the face regarding your absence.  

Tzvi had a hockey tournament this weekend. PS: Thanks for helping him score that goal! I know it was you, and I am sure if anyone realized I was crying in a hockey rink over my kid scoring a goal they would have said "umm, alrighty then".  It's in those moments specifically I want everyone to know that I am an emotional mess because I buried you.  Similar to the moment some little (I will leave out the adjective I want to use) kid slammed his body into your brother and sent him flying into the boards and I jumped up and screamed HEY so loudly every single person in the rink looked at me.  It's as if I wait for these games to let bereaved momma bear out...I am torn on whether it's a continued blessing or a failed mission I haven't been thrown out yet by the refs. I behaved, I waited until the other team's parents walked out of the rink to give me time to calm myself because I was legitimately about to go off on them.  I guess year two is starting out with that whole anger stage of grief.

Anyway, my love, it is getting close to midnight.  I miss you so incredibly much it sucks! I hope you are having a great time wherever you are.  We all miss and love you!

Until next week.

Love always, 

Ema

Sonzee "turns" 6

Dear Sonzee Bear, 

Another birthday we didn't get to celebrate together, it seems wrong to have a day on the calendar in honor of the birth of you when you are no longer here.  Aba made a statement about how he didn't want to celebrate today because a birthday is the celebration of life, and now there is nothing to celebrate.  Valid (horrifically painful) point.  Man, this sucks.  I wish I could say this year was easier than last year, but it isn't, it is far worse.  I hope it was the exact opposite for you.

I wore my usual birthday outfit in honor of you despite the circumstances.  Had I actually ventured out into public and had a conversation about the balloon leggings, I am sure it would have been fantastic to mention I was wearing them in honor of my dead daughter. I spent this morning with Corrinne's mommy.  We spent the time literally sitting on you, drinking our Starbucks in some beautiful Phoenix weather.  It was the perfect way to spend your day.  I can imagine you had an extravagant party considering so many of your friends are with you for this one.  I hope they made you feel beyond special.  I hope you ate cake and ice cream and ran around in a beautiful wonderland with your curly pigtails and no doubt, a cute outfit.  You have probably another year until you would be too old to wear the pigtails without rolling your eyes at me.

Besides decorating your grave, I am sorry we didn't do anything to celebrate you.  No one here even mentioned cake or cupcakes in your honor.  I mean, to be honest, besides that horrible keto cupcake I made for your first birthday, you never had more than a lick or bite of food anyway, so what would have been the point?! Meena made a sign for you and hung it on the front window.  Today she finally got her "Sonzee and I" book.  Now all of your siblings have a book of you and them individually.  

I spent some time today, as much as I could before it was just simply way too difficult, looking at your birthday pictures.  I realized that for 4 years we were distracted with the reality of what today really was.  You were here, so the focus became on celebrating you, and now you are not, so the focus went back to the day we first met. You were able to meet your siblings one by one, and I have some of the sweetest pictures of them standing on stools to be able to touch you, but it wasn't the first meeting I had envisioned.  There was a picture of the lab results the NICU team wrote on paper, at the time I didn't understand any of it, but it makes me chuckle now that I can talk medical slang like it's my job.  It was such an emotionally draining day, but it turned out to be the most accurate foreshadowing of your life.  Me with you in a hospital, scared and unsure of what was going on and going to come for a lengthy period of time, and aba at home with your siblings.  

Oh, my little girl, I wish there was some compromise I could make with g-d to be able to peak through a window into your world.  I trust you are beyond amazing.  I trust you are free and your soul has elevated to the highest place possible, and maybe even beyond because of your incredibleness. But I am just so lost without knowing the specifics.  You can go ahead and laugh at how my gut isn't enough for me anymore and I need the proof.  

I wish you another incredible year full of comfort and peace, and I selfishly wish that you would find a way to help me find just a little of that for myself without you being here.

Happiest of what would have been your sparkly, shining, glitzy 6th birthday my love.

Love always, 

Ema

53 weeks

Dear Sonzee, 

We are officially one week into year number two without you.  I think year one for me was better because one week into year one I spent in denial and that lasted for probably an additional 20 weeks more, maybe even more.  Year two, there is no more denial, it is just a fact that you are gone.  There is no way to cushion that reality.

Last week completed the second honoring of the day you left us, this time on the English calendar.  It was a pretty rough day for both aba and me.  I anticipated it to be as awful as it was, but aba didn't, so that was something he had to deal with on top of the day itself.  

I couldn't find a name to describe your anniversary that felt right.  Some people refer to it as the name of the child who passed combined with anniversary (ie: Sonzeeversary) or "angelversary".  I don't know. Neither really fits for me.  I just continue to call it the day you died.  So many people reached out to us last week.  We have so many bouquets of flowers, we were brought dinner, I was given some relaxation items and Mrs. Tanzer even made me her amazing sangria.  I ended up making it into work and survived the day.  I am pretty sure I was meant to go because of the conversation I ended up having with Ms. Barb while I sat outside and tried not to completely fall apart. 

Laeya finally convinced aba to get her a kitten. She has been having such a tough time with you gone and she has wanted a kitten for so long.  This little 4lbs of cuteness has turned out to be exactly what she needs.  She is the perfect cuddle companion, and now along with her fuzzy and Sonzee bear, she fits right into her lap for nighttime snuggles.  The only "challenge" is girlfriend cries for her mommy all day long, so as soon as Laeya gets home from school, little Bindi is beyond excited.  Brucie and Bianca have zero desire to engage with a kitten, but you would probably find it funny watching her try to hang with them.  Their body language is similar to how you were when you didn't want to be bothered, they just turn away and get comfortable.

Everyone is painting you special rocks for your birthday this coming week.  I still don't quite understand how you died 4 and will be turning 6 and it's only been a year.  Glittery/sparkly/shiny is the theme, so your rocks will be done accordingly and we have 6 pinwheels that Laeya and I put together to place on your grave along with a birthday sign (or two).

Anyway my love.  I miss you SO much!

Until next time!

Love always, 

Ema

Beautifully Horrific

It wasn't until Sonzee that I gave death much thought.  Even the thought I gave was nothing more than simply the potential that it might occur.  However, at some point early on, within the first year of her life, when people asked me if there was a life expectancy, I would matter of factly reply there is little information specifically, but we know we will most likely be burying our child.  Maybe some would cringe if they knew I said that?  Maybe some would even argue that fact?  Maybe they could have been right?  But, maybe I said because it was simply a protective mechanism my brain set in place to attempt to cushion the looming possibility? Regardless, I would say in our case it has proven to be an accurate statement.

Spending days, weeks, and close to entire months in the hospital at a time let us know that Sonzee was truly not a fan of that environment.  It can be argued that no one ever is, but in our case, it was so clear we vowed that no matter what, we would never let her die in the hospital.  When she was a year and a half old we did our first family stay at Ryan House, which happens to partner with Hospice of the Valley, and that is the only place we considered outside of our home that we would let her go to die.

I had never imagined the specifics of her death, even in the life we lived, there is no way to possibly imagine what death might look like, but I did envision peace and comfort regardless of location.  I had always assumed it would feel awkward to let her die in our house and then continue to live in the same space.  I thought it could potentially feel...morbid.  I had those heebie jeebie vibes over the thought of passing by a space that was filled with death.  Then, the unimaginable became our reality, and it didn't seem so scary, it felt right.

The 11 days Sonzee spent on hospice were truly a gift despite the reality of the situation.  We were able to make sure we did what we could in a short amount of time so there would be as few regrets as possible.  I asked anyone who lived through a similar journey or who worked at hospice of the valley to tell me everything they did so I could ensure we did it.  In the end, we did the best we could to ensure we could look back and not have too many sentences that could start with I wish. 

Whether the decision for hospice is because it is in the best interest of quality of life and or to eliminate the suffering.  Whether the decision is one that is made on behalf of a loved one or the loved one themselves makes that decision.  Whether the decision is one made due to circumstance.  Regardless of whatever the reason may be that a loved one ends up on hospice, it should be made very clear it is not giving up, it is not killing, and it is never a choice that is made out of anything other than immense love. It is the most difficult, painful, beautifully horrific experience that a family can encounter, and it should never be spoken about as anything other than that.