Thursday, November 26, 2020

Thanksgiving 2020

 

My Dear Sonzee, 

A year ago, two years ago, three years ago, four years ago, and five years ago you were dressed in a Thanksgiving day outfit.  Today, not one of us is wearing anything specifically for Thanksgiving, but I did paint a themed rock for you.  Today is one of those days where everyone will say how they are thankful for their families and whatever else is a blessing and perfect in their lives.  Today is one of those days where many people will feel this emptiness within their hearts and do their best to focus on what they have or what is good in their lives, but it won't make a difference.  Today is just one of those days that I have been dreading.  Luckily for me, your brother's Hebrew birthday also happens to fall today, so while I feel utterly unprepared, it at least replaces the emphasis of the day.  I have to admit, as far as birthdays are concerned, I have really slacked in that department as well.   

As usual, I made plans, Hashem through a curveball, and although I figured out a way to work around it, I didn't hit a home run.  Luckily your little brother is a chill kid who just wants to eat candy and know what items have been sitting in the packages on the counter for him, so I think I got a free pass.  If I am honest, his birthday is a slight distraction, but really, today sucks without you here!  I honestly wasn't sure, but I feared it would be awful and it turns out it is exactly that.  I miss you not being here to wear a special turkey outfit with your sisters.  I miss the cute hair accessory I would have gotten for you.  I am just really done with this whole you never coming back situation and missing LIFE here with us.  I tried to buy your sisters' matching dresses, but in the end, I just couldn't do it.  I couldn't plan a themed menu.  I couldn't plan anything related to today.  Instead, I bought an air fryer and decided to completely ignore anything related to the day specifically.  Your father insisted on getting Turkey legs, so while I am cooking a Turkey soup, there won't be any other indicator today is Thanksgiving. 

I guess this whole dealing with grief thing means I need to acknowledge where I am at on the journey, and where I am at today is beyond 100% thankful for COVID19 making all of the normal plans impossible to happen.  I won't lie, thankful doesn't even begin to describe how I feel about the fact that I don't have to put on a fake smile and pretend it's such a fantastic day.  I didn't even send myself flowers for today, because I am refusing to even acknowledge today is anything more than just the last Thursday of November of 2020.  While I am thankful for your brothers and sisters and all that we have, the reality is that I am just not ready to give that more weight than the fact that I shouldn't have to rationalize a positive to make up for the fact that you aren't here.  

But, my love, wherever you are today, please know that what I am beyond thankful for is the fact that you will NOT be seizing today.  You will NOT experience any pain today.  So I will do my best to try to remind myself that you are in a better place, I just wish that both worlds could come together because, my baby girl, you should be here, I wish somehow you could be here.

Until next time.

Love always,
Ema

The Mighty Contributor

Monday, November 23, 2020

42 Weeks

Dear Sonzee, 

Hey baby girl. I can't believe it has only been one week since I last wrote to you because so much has happened, I am honestly not even sure where to start.

To begin with, we got back the first family photos that we took without you at Bear Pines.  They are absolutely amazing, except that we had to have a stand-in for you.  They were the best stand-ins we could find, but nothing will ever be able to replace you, so it was as good of an attempt as can be. They are honestly perfect for the situation, but I can't look at them all at once or for too long without the tears coming to the surface.   It's a shame you couldn't have been part of the red buffalo plaid theme because you would have totally rocked it!  Nurse Paige would have done your hair to the nines and you would have loved the cold breeze. I considered changing my cover picture on Facebook, but couldn't.  I thought if I left you and me as my actual profile picture it could work, but I am just not ready with that idea. 

We are starting to rent out Bear Pines more often now, it gives me such joy to be able to share its essence with those who want to experience it.  There is definitely something so magical about it, although I might just be biased.  After our most recent guests, I have some other items I want to incorporate and fix up a little bit, but overall it has come together perfectly.  The ice rink was delivered at the beginning of last week, so I am excited to get back up there and get that all setup.  We initially had planned on going up for Thanksgiving because I wanted a change in scenery, but then all of our quarantining efforts were essentially voided when aba's employee came to work with COVID19, and now it is in our house.  The irony of the fact that we have been probably the most careful, cautious, and quarantined family for the last 9+ months has not failed to be seen.  The good news is that when we are all done with this, we will enter back into the world. 

The weirdest thing is it happened exactly a year to the date of Saba's passing on the Hebrew calendar as if to say that we all need to move on already and that you and he are fine.  At least that is how aba and I are taking it.  I have been so afraid to move forward without you I have been using COVID19 as my crutch and excuse, but the sad reality is, we all need to do it...and I know that it's what is best for your siblings and for myself as well, no matter how horribly painful it is.  The truth is, you aren't here in this house, we don't have to protect you anymore.  In fact, you are free, you don't need any protection, and it's time for your siblings to live their lives.  Our first order of business after our quarantine and when we are completely free of symptoms will be to visit friends out of state.  I went on Amazon and I ordered the girls and I gold sequin boots for hockey games, along with sun devil face masks and beanies.  I am not even going to lie and say this is going to be easy at all, but we need to begin to move forward.  We will send your siblings to school but I do plan to stay virtual so I can actually have the time I need to deal with all of the emotions of grief that I have not been dealing with.  These next 10 weeks and into year 2 is probably going to be significantly harder than the current one...but it is what it is.

Speaking of your siblings, your eldest sister is having a tough time lately missing you.  Maybe you could pop in to see her or send her a sign or something.  She is more like me with this whole grief thing.  It is just tough.  Like she said, it went from losing you to coronavirus restrictions and it's just a lot.  She carries the weight of the world on her little 10-year-old shoulders and I wish she would cut herself some slack.  I am most excited for her to be able to get back to seeing most of her friends in school.  She really needs it.

We made our first luminary for you through Hospice of the Valley and watched your picture on the televised light up a life special on channel 7.  You were literally the 2nd to the last group of pictures because of the alphabet.  Auntie A and I were laughing at how I had never wanted to marry anyone lower than T and here we were.  M's took 20 minutes, it was insane.  Anyway, we all decorated the luminary and lit it up.  We now have it to add for the nights we light candles in your honor.

Anyway, my love, I think that was a lot for this week.  Remember I love and miss you incredibly!  I hope, but deep down know, you are doing amazing things!  

Until next time.

Love always, 
Ema




The Mighty Contributor

Monday, November 16, 2020

41 weeks

Dear Sonzee, 

Another week has flown by, but what a week it has been.  I don't even know where to start.  Last Monday we completed our first family pictures minus the physical you.  It was mentally more challenging than I anticipated (and trust me I was pretty sure it was going to be awful, so I wasn't too far off).  Yet, I managed to make it through them.  Mrs. Nonni did such an amazing job incorporating you in them, and I am just now excited to see them.  The problem is that I am excited to see them, but I am already swallowing the lump in my throat as I consider the thought of having pictures without you in them.  I don't know if I will be able to do more than look at them?  I don't know if I will be able to actually put them up anywhere or change any pictures that actually have you in them, but I guess that will be something to deal with when I get them back.

Last week we had family grief group.  Aba and Tzvi were in Phoenix and unable to attend due to hockey, but the girls and I participated.  It was a really good session.  We made a chain of paper with each of our emotions and messages etc. individually written and then connected together.  As open as we are in the house about your absence and death and everything your siblings have had to deal with I am always surprised when something they do or say takes me by surprise, which is exactly what happened when it came to writing down emotions we have felt in grief.  Your oldest sister put that she is feeling scared.  I honestly never thought any of them would feel scared because we had always told them that you dying was a sad reality we would most probably be facing.  I figured that because you had a CDKL5 mutation and none of us did, that she wouldn't generalize death outward.  It turns out though, she is still scared about another one of us dying too.  Me too baby girl! Me too!

This Friday on the Jewish calendar it will be a year since Saba died.  We are going to be back in Phoenix and will do a special Shabbat dinner in his honor.  While it feels like time won't slow down when it comes to your death, for me, it feels like the closure of Saba's year took a lot longer.  It means that your year is just about the corner.  Something I am pointedly aware of but wish it wasn't the case.  

In 10 days we are celebrating Noam turning 3.  You two would be the best of friends, I know it.  He LOVES to look at videos of you.  He knows exactly who you are.  He talks about you all the time, and as I have mentioned previously he really misses kicking you and you kicking him in the car.  There was another little squabble last week when we drove up here because he was tormenting Meena.  She just doesn't care for the foot to her face like you did.  

It took about a week but basically, all the snow is melted here in Bear Pines.  There are a couple patches on the roof, but they will probably be gone tomorrow.  Now the pine needles have to get removed...again.  Your father and his need for "good old nature", has me over the pine needle situation.  We will now be having a company remove them because nothing is more disappointing them spending 8 hours raking and making piles and making the yard look so pretty to return 3 days later too....the same exact amount of pine needles all over the place.  So, I am quitting.  We had the dead tree branches cut down and there was a dead tree that sadly had to be removed.  I was worried it would make the backyard look like it was missing something, but it actually looks great, and I think we are going to carve our initials into the little stump they left.

A family of a newly diagnosed little girl reached out to your Facebook page the other day.  She was also 8 weeks old.  You used to hold that youngest age of diagnosis spot.  She messaged me to ask what your current skills were.  I had to read the message a few times to properly process it.  I didn't understand how she missed that you died, but channeling back into my earlier days I am sure she was just grasping for something, anything.  My heart hurt for so many reasons. The first is that I had to be the one she reached out to as her first intro into CDKL5.  I don't know what "hope" there is when you are told that the child you are hoping will give you something positive to look for with your child is no longer alive.  My heart broke to tell her that.  My heart broke because I was once in her position. My heart broke because after so many back and forth conversations I just couldn't do it anymore.  I lasted longer than I initially thought I would, but eventually, I placed her into the hands of those who would be better to serve her needs and I closed the messages.

At least in your death I am finding a way to be true to myself and doing what I can and not more.  It is yet again another skill not mastered, but I know there has been a lot of improvement.

Anyway, my little bear.  I have rambled enough.  I miss you so much and love you even more.

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, November 9, 2020

40 weeks

Dear Sonzee, 

I have learned a lot since you came into my world and then left it.  Early on at the beginning of our journey together it was evident that I had no control.  No matter what my type A personality tried to convey, reality would essentially slap me in the face, and so eventually, slowly, but surely, I learned to let things go.  I italicize learned because anyone who knows me even a little bit will tell you that while this trait has improved, it is nowhere near perfect, however, for anything on the smaller scale of significance I can take a deep breath and quickly move on.  That is why yesterday when our (dreaded) family pictures required being postponed to today after I was already on the verge of an emotional breakdown I didn't get angry, I just decided to put your siblings in their clothing, Aba in his, me in mine, and took some pictures with the snow falling, regardless of my less than professional photographer status.  (Don't worry, I have since done 7 loads of laundry and we saved your mermie and bear for today, using only the special rock I painted with yesterdays date).  I am unsure how it will go today, on a Monday, the same day of the week that 40 weeks ago we had to say goodbye on mixed in with my work schedule, but hey...we have made a lot of challenging things work, so I am not overly worried.

Your sisters, Noam, and I came to Bear Pines this past Friday after the snowflakes appeared on my weather app.  I was worried about driving Saturday night in the rain/snow on already wet roads in the dark, Tzvi and aba were staying back in Phoenix until after his game Sunday morning, and I wanted to make sure we were here for that first of the snowfall.  It turned out to be the best idea because your siblings have been playing their little hearts out in the snow.  Tomorrow the snow won't be falling much anymore, but they will have a good amount to play with on their day off from school.  I was pretty impressed after we took pictures and they got changed into their play clothing that they stayed out for hours yesterday, Noam too.  They absolutely loved it, as did I...aba...not so much.  You know how he is about the cold.

You know politics isn't really ema's thing, but I feel I should share that this week the United States has gotten a new President and Vice-President-elect.  While I am not going to discuss my opinion of that in this letter to you, I will say that despite anyone's political party allegiance everyone should be able to appreciate how absolutely incredible it will be that we will have the first female vice president in January.  We have never limited any dreams of your siblings and we tried to fulfill ones that you might have had, and so to see this potential as something actually tangible for your sisters if they ever wished to embark on such a political journey is just an amazingly beautiful concept.

FBC is going back virtual due to Covid19 cases being on the rise in Maricopa County again.  My caseload will shift upwards a bit, but otherwise, because I haven't stopped providing virtual therapy, nothing else has changed for me.  Aba and I just continue to figure out the logistics of everything.  I almost considered sending your siblings back to school after Thanksgiving, and have been thinking maybe January, but now I continue to be unsure.  The ability to relocate every other week or whenever we can seems to be working right now for the majority of us, and so I am not personally in a rush.  I know aba doesn't care for the back and forth multiple times a week due to Tzvi and hockey, but otherwise, we are all fine.

Anyway my baby girl.  I must end another letter to you again and hope you receive my messages of love and sentiments.  I have no idea how the length of an entire pregnancy (although 1-4 weeks longer than any of mine) has passed and yet I have no little Sonzee to kiss on, hug, cuddle, or physically love. I am waiting for you to meet me in my dreams! (Although I thank you for the other signs you have sent my way).

Love always, 
Ema 


The Mighty Contributor


Tuesday, November 3, 2020

9 Months


My Dearest Sonzee Bear, 

Today marks 9 months since you were last here.  Your 9-month rock will be placed later on today.  It is overwhelming insanity that this much time has passed by, but much like life while you were here, I can remember every moment as if it just occurred.  Only 3 short months are remaining until it will have been an entire year.  The mere thought of that makes me gasp.  How? What? I don't really understand.  If I was asked to rank the last 9 months of my grief, I would have to say this month has been the most challenging for me, yet the most productive.  I think the two go hand in hand.  The productivity is definitely due to me trying to find a way to channel all of my emotions. The sad part, despite being thrilled with all that has come to fruition, in all honesty, it doesn't change the pain from you not being here or soften the blow or even attempt to heal the hole that is still ever-present at my core.

This month I have at least come to accept that my grief is extremely heavy and all-encompassing, but avoiding it isn't helpful.  While I acknowledge where I am at, I am still not exactly ready to dive into it with completely open arms.  I will just take a page from your book and focus on small little Sonzee-stones.  Eventually, slowly but surely, on my own time, just not right now.  I am giving myself points for the revelation itself, the rest will have to wait.

I can't figure out exactly what shifted, but your siblings have been wanting to participate in their grief groups this month.  Laeya mentioned she has been feeling nostalgic for you, and so the timing couldn't have been better that her photo book of you and her arrived.  This caused Noam to want to look at the book he has of you and him, and in general, he asks to watch videos of you regularly.  Meena and Tzvi have both been asking me about their photo books.  They are both on my need to get done list.  As a family unit, there is nothing that could be more true than everyone grieves individually.  The challenge is there are 6 of us, and none of us are amazing at articulating our emotions.  Half the time it's the hindsight that makes it apparent it was grief-related.  There is not really a guidebook and we are all just trying to do our best sorting it all out, it just feels a little chaotic to me. 

Bear Pines has gotten multiple bookings and we have been getting all the final touches in order.  I replaced all of the Co2 monitors and smoke detectors this week, ordered a few more items for the coffee bar to add variety, the heat upstairs and downstairs works perfectly, we are only shy 3 new sets of cordless blinds, and I am excited for the rain and snow to begin to fall more regularly so restrictions can be lifted and we can begin to roast some marshmallows outside in the bear & pine tree fire pit.  On that note, this weekend calls for snow, and it just so happens we are doing our first set of official family photos since we last did them with you.  If it really ends up snowing I will be so excited!  Don't worry, you will be with us every step of the way, and I will make sure to have tissues nearby for when I inevitably cannot take the fact that you are physically missing.

On that note, guess what?! Uncle FINALLY got married!! I know, Auntie A and I are still a little shocked ourselves!  We couldn't go because it was in New York and we were not getting on an airplane during this pandemic, but we watched over zoom.  We had your bear and mermie as your picture place holder.  Laeya felt it was best to use Aba and my Sonzee bear because they were your last pair of pajama's worn and they were polka-dotted just like our outfits, so it was meant to be.  It was the first of many family occasions we will have to get used to celebrating minus your attendance.  It feels like a punch to the gut and it makes it really difficult to fully enjoy the experience, BUT we all survived, we all smiled, and we all thought and spoke about you the entire time. 

The last thing I wanted to share with you about this month is that we launched your PEMU pajama closet at PCH!  We are starting out small with just 25 pajamas and will then grow.  At max capacity they are willing to put 100 in the closet, so we are all going to see how the initial introduction goes and move from there.  I started a fundraiser on Facebook and have already to the moment raised over $800 to purchase pajamas.  I am really excited! This will certainly cover the first batch and anything else raised will go towards our second batch.  I finally feel like Sonya's Story has found its niche, other than supporting all the organizations that helped you on your journey, this so perfect. I am just disappointed it wasn't thought of sooner.

I hope you are having an incredible time wherever you are.  Remember that you are loved and missed and always thought of!  Please consider visiting me!  I miss you incredibly!!

Love always, 
Ema

PS: "They say you are in a better place
and I sure would be too if I could see your face"



The Mighty Contributor