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

Friday, October 30, 2020

Shifted

I debated between a glass of wine and a decaf coffee.  While inside the house is warm, it is 36 degrees outside and a cup of something warm seemed to be a better fit.  I walked into the kitchen and opened the cabinet.  The mugs we have for after our meat meals are black on the outside with a primary color on the inside.  I tilt each cup down until I find the red, today it only took 4 tries.  There are little representations of her all around me.  I wonder if that is why that in a place she has never been inside of, I feel closest to her when I am here, at Bear Pines.

We don't have anything of hers specifically here, but there is something about being here that makes reality nonexistent and my ability to cope with her loss easier.  There are bears and red accents all around, there is a warmth inside that I know is from her influence, but without the specific memories and flashback of her physical presence because she hasn't ever been here.  I can't go into her bedroom in Phoenix, but I have found this place to be my mental compromise and escape, a place where I can feel closer to her, but the reality of her life and death isn't right in my face.  Gosh, this whole grief journey is really complicated.

I put together the NBA Jam arcade game in the game room today.  Her sisters were in there laughing while playing on it, having what sounded to be a great time and the song "I see the light" from Tangled was playing on Alexa,.  Then there was some tsunami of a perfect storm around me because it was the first time in almost 9 months their laughter brought me to tears.  I had never understood why I was previously told statements such as, it is okay to laugh, it is okay to smile, it is okay to have a good time.  It was the first time their happiness felt unfair, out of place, unjust, and it was yet another surprise wall slam on this grief journey.  While I wonder if it is considered a new low to be using a Swiffer vacuum and finding yourself in tears I am sure there are going to be more of these lows.  At least while I am here, attempting to escape the reality of grief, even when it finds a way to seep in, there is always something related to the house's namesake in nearby view that helps to fill my lungs with air and help me moving forward.

And the world has somehow shifted
All at once, everything is different

  

The Mighty Contributor

Monday, October 26, 2020

38 Weeks

Dear Sonzee, 

Close to 40ish weeks ago we formally placed you into hospice care.  38 weeks ago I gave you the last kiss on your cheek you ever received from anyone.  Between the next two weeks or so, mothers will be giving their babies they have been dreaming of over this same time period their very first kisses they will ever receive.  The only word I can think of is insanity, I am sure there are others more appropriate, but they might sound a bit bitter, which isn't really how I am feeling.  I would say hurt, heartbroken, confused, and out of place would be more appropriate, but yet even they still don't do the emotions justice.  They also really don't fully explain much to anyone not in this club, which also seems unfair in and of itself.

The further time goes on, the more I feel myself unravel a bit more.  I feel like the world just keeps moving at whatever normal speed was or really is, but I want to scream STOP!  It's NOT normal to have to live without you.  Life shouldn't be continuing on without you here with us.  We shouldn't be a party of 6...we ARE a party of 7.  I feel like the world doesn't get it, and let's be honest, people don't, but also at the same time they shouldn't, it's just me who wishes they would?  

It's weird how while you were here with us we really couldn't sweat the small stuff or the mundane parts of life because the challenges we faced were really traumatic and literally life and death.  But, now you are gone, and we have faced death, and honestly, even the challenges we once faced feel smaller than the reality and concept of you being dead, so I care even less about what the majority of the world might consider a code red.  (I still hold my stance that everyone's challenges are individualized to them and so my challenges don't make someone else's less, they might be huge for them, so I am not diminishing that at all, they just aren't anything that if I was faced with would affect me the same.) 

Your sisters, little brother, and I stayed at Bear Pines an extra night because what was initially a huge chance at possible snowfall has been decreased to possibly an in the middle of the night snow shower, so we are here and I will wake them up to hopefully see the first snowfall of the season.  They have an eye drs appointment in Phoenix in the morning, so we will be up early anyway to drive back, but honestly, it matters more for them to get this experience, so I will do what I can!  They were so excited pulling out all of their winter clothing.  It is currently 44 but feels like 30.  I have every weather map up I can find to give me some hope we might all see a snowflake.  The last time we saw one, you were with us here and we took you sledding.

Tzvi scored his very first goal in squirts today!  It was a beautiful shot, he even tripped and fell and still made it in!  I was so proud of him!  He is really becoming a solid little player!  He is even playing with a mask on which I know isn't exactly easy for him.  His team won 10-3, it was really something to see.

Anyway baby girl, I love and miss you a lot!  I hope to see you in my dreams soon, whether I am ready or not...it's been too long! 

Until next time.

Love always, 
Ema




The Mighty Contributor

Friday, October 23, 2020

Can't...

Throughout Sonzee's entire life I felt like we were walking a tightrope, and not one that you see in the circus, the ones that set world records for people being able to successfully navigate to the other side.  I suppose it would be up to individual opinion as to whether her death was the other side or if I missed a step and fell off the rope.  I guess it also depends if the rope was hers or mine? Either way, like we are all engrained to do,  I have to pick myself up and keep on moving.  If her death was me falling off, then I have to get back up and continue on the same rope.  If her death was me making it to the other side, I have to keep moving forward, so the journey continues on an extension of that rope.  Except...I can't.
 
I can't isn't exactly honest, nor is it really fair to say, it is more of an "I can't" blended with an "I don't want to".  My new journey means it won't ever be what it was.  I get that, I do.  I understand there is no going back and there is no physical her that will be in my present or future.  Whether I walk along the rope or stay where I am at, that fact is never changing, I understand that.  But, if I take a step, even a small one, even one that she would've taken in her gait trainer, then it means it's a step further away from her, further away from the life we once lived, further away from life with Sonzee.

I talk to friends, I scroll through Facebook, I see varying opinions on COVID19 and remaining at home vs going back to normal.  I am stuck.  Our life was a quarantine for the 4 years 11 months and 22 days she spent with us.  That is our normal.  That is what I know to be life.  That is where I have always felt safe.  It's how and where we were able to keep her relatively safe.  Since 2015 we have followed Phoenix Children's Hospital restrictions in our house, and no one comes in or out from late fall to close to summer.  A medically complex sign hung on our front door, shoe coverings (and at times masks) were given to those coming inside, and hand sanitizer pumps attached to the walls are front and center. The life of quarantine is a familiar one.  It was all because of her, and the thought of leaving that because theoretically, we now can, makes this rope even more of a challenge than the one I once thought to be the most delicately woven thin impossible rope to maneuver.  

The Mighty Contributor

Monday, October 19, 2020

37 weeks

Hey Sonzee girl,

The weather isn’t awful and I am able to sit on the sidewalk in front of you today at 2pm without burning. The tree closest to the street is actually providing you some shade.  I feel like that hasn’t always been the case? Or maybe it's just the time of day?  There seems to be a consistent breeze today...it isn’t overwhelmingly hot either...I know your welcome breeze will be here shortly. Ahhh here it is.

I am essentially a day early writing this post, but for some reason I felt like writing by your side, so I will just post it tomorrow.  (Today) marks 37 weeks.  It doesn’t make sense to me that we are coming close to 9 months.  I could’ve birthed a baby in this amount of time, but yet I’m just marking another amount of time that has passed without you here.  It’s still. So. Hard. 

Bear Pines has been filling up with guests and it makes my heart so happy.  It’s still not completely 100%, but it’s getting really close.  I’m hopeful that when I pop back up this week the facia will be all painted and hung and the house will be all completed on the outside.  The idea was a fresh coat of paint and it turned into a bit more than that. Oops! There is a teensy snag on your siblings playhouse...hopefully we get it sorted out quickly or we will have to remove it and start from scratch on a smaller scale.  But, we will be having the ice rink!!! I am so excited! I hope it all comes together. 

Speaking of ice, Tzvi played his first game as a Jr. Sun Devil today! We didn’t all go like we usually do...but we watched on the computer and Tzvi went out at first shift! My heart swelled with pride! I honestly wasn’t sure if or how long of playing time he would even get, but he did great! No scores today, but he had some really beautiful passes.  There’s a part of me that is thankful we aren’t in person...to have to go back to a rink we have taken you into and not have you be there is something I am still just not ready for.  I can picture the last time I changed your diaper in that parking lot last year, and where I placed your wheelchair during the game.  There was a stroller in the view of the camera during the game and I was glad when it moved out of view. 

We did 3 year old pictures of boss baby yeisterday.  He wore a tuxedo and used your pink car...it’s totally perfect for him because he can pull it off.  He is getting an orange mustang for his birthday...you guys would have had the best races! He’s been looking at your book a lot recently and he’ll point and say Sonzee...Noam...and smile.  There was one of you in your car and him in the little tikes car being pushed.  Tzvi asked when I’ll make his book with you...I NEED to make that a priority! I often wonder how I managed to get things done during your lifetime considering I can’t find the time now to get anything done? It’s quite confusing for me!

Anyway my love,  I miss you so incredibly much! I wish there could be a countdown until I knew I would see you again...but I know that’s not how this all works.  Instead I will just keep counting the weeks since you were here and telling you what is going on.

Love you so much!!

Until next time.

Love always,
Ema 


Wednesday, October 14, 2020

Marked complete

Every once and a while I go into the backend of Sonya's Story business page and scroll through the posts I have yet to react to the comments of or mark as completed.  It is usually in the middle of the night when my ability to sleep is far enough away that I am just starting to be aware of the burn in my eyes.  The type A person in me hates to see the red notification alert and the number of how many items remain.  Inevitably I get antsy with scrolling by date, mainly because it makes me feel like the task is insurmountable when it takes me 20 minutes to get through whatever the current month is, tonight it happens to be October.  I then decided to start to type letters and have smaller lists to mark complete, but didn't give the letters I typed much though and began with Jan.

I worked through some from January 2018 (I know, I am really behind), then 2019 (I had forgotten how bad that month was), and then naturally, because it was January, stumbled across my post about hospice.  If I could explain the feeling that consumes my body when it comes to certain flashbacks, it would still most probably not do it justice.  It's an immediate chill complete with this prickling sensation that overtakes me, it then strikes really hard at my chest and travels up into my head and leaves me feeling like I was punched in the chest but mixed with this coldness that penetrates my core as if I was damp and sitting in 40 degrees outside.  The waves of chills continue for a bit; and all the while I continue to read through the hundreds of comments I never could previously stomach.  That is a mixture of heartache and appreciation.

Gosh, this journey has been so unfair.  She was never even given a fair chance, it makes so frustrated for her, so sad for everyone who loves her, and just heartbroken in general.  I am grateful and thankful for how her living journey ended, I couldn't have dreamed up a better scenario...except for one where it never needed to even be a consideration of a dream.

The Mighty Contributor

Tuesday, October 13, 2020

36 weeks

Dear Sonzee,  We survived our first Simchas Torah without you.  I know if we had ever asked you, that would have been your most favorite holiday.  I remember how initially aba didn't want to take you to dance around the Torah when you were an infant because "you wouldn't like it", but I made him anyway.  I told him there was no way he could know when he hadn't even offered you the opportunity, so with me standing from the woman's section, I watched eagerly as he pushed you around with everyone dancing with you.  Meena and her friends always climbing into the stroller to sit practically on you, every other year someone broke the footrest or the front portion of whatever stroller or wheelchair we sent you.  You absolutely LOVED it.  I was SO beyond thankful things weren't back to enough normal here in Phoenix (for me at least) to have to go watch that dancing without you being there.  Aba wore you on his socks, did you notice yours are red? (I am going to get him some more of you) This weekend was tough, I won't lie, but I suppose there have been and will continue to be worse days.  Aba danced with your siblings around the counter and I had to really hide the tears in my eyes as I watched Noam hold onto Meena.  I wondered if you had been here if he would have pushed you or if you would have been pushed by aba?  I can sometimes picture you participating as if you are here, not sure if that is better or worse.  It certainly makes pretending I am ok near impossible, but I am pretty smooth at this point at getting passed the moments unnoticed.   The issue though is then in talking to Auntie A thinking I am fine and then being unable to get through the story without the tears.  I went to tell her our across the street neighbors had their 2nd grandchild.  I saw them get out of the car and I could tell with all of the items being taken out there was going to be a newborn baby to follow.  I started to daydream back to the times of Laeya and Tzvi and I was thinking about how we used to be like that, parents of two.  Ziva was over playing with your siblings and they were all running up and down the driveway being silly and laughing.  As I stared my mind said, yes I am sure her looking over here will be like yup, 5 is insane...and then as if I was slapped awake from a dream Ziva ran by me with one of her infectious smiles and red cheeks from running down the driveway and I realized "oh, wait".  That pretty much sucked the life out of me.   So many moments like that have been occurring lately.  Apparently, aba has felt a bit similar.  Maybe it is just how this goes?  We are halfway through October and despite knowing the cemetery will call me when your monument arrives I hold my breath every time I drive up to you.  I am half-filled with excitement over potentially seeing it and relief when I see that it isn't up.  Aba and I want to do something "biggish" for the unveiling, COVID19 style that is. I am thinking of a zoom debut?  I also have started to think about what we will do to honor your one year anniversary.  The time seems to be sneaking by so quickly, I feel now would be a good time to start really figuring out what we want to do.  I wonder what things will be like in spring regarding Corona.  That will certainly play a role. I miss you beyond words!  We love and miss you so so much! Love always, Ema http://dlvr.it/RjX7Bl http://dlvr.it/RjXZTJ
http://dlvr.it/RjXxlb

36 weeks

Dear Sonzee,  We survived our first Simchas Torah without you.  I know if we had ever asked you, that would have been your most favorite holiday.  I remember how initially aba didn't want to take you to dance around the Torah when you were an infant because "you wouldn't like it", but I made him anyway.  I told him there was no way he could know when he hadn't even offered you the opportunity, so with me standing from the woman's section, I watched eagerly as he pushed you around with everyone dancing with you.  Meena and her friends always climbing into the stroller to sit practically on you, every other year someone broke the footrest or the front portion of whatever stroller or wheelchair we sent you.  You absolutely LOVED it.  I was SO beyond thankful things weren't back to enough normal here in Phoenix (for me at least) to have to go watch that dancing without you being there.  Aba wore you on his socks, did you notice yours are red? (I am going to get him some more of you) This weekend was tough, I won't lie, but I suppose there have been and will continue to be worse days.  Aba danced with your siblings around the counter and I had to really hide the tears in my eyes as I watched Noam hold onto Meena.  I wondered if you had been here if he would have pushed you or if you would have been pushed by aba?  I can sometimes picture you participating as if you are here, not sure if that is better or worse.  It certainly makes pretending I am ok near impossible, but I am pretty smooth at this point at getting passed the moments unnoticed.   The issue though is then in talking to Auntie A thinking I am fine and then being unable to get through the story without the tears.  I went to tell her our across the street neighbors had their 2nd grandchild.  I saw them get out of the car and I could tell with all of the items being taken out there was going to be a newborn baby to follow.  I started to daydream back to the times of Laeya and Tzvi and I was thinking about how we used to be like that, parents of two.  Ziva was over playing with your siblings and they were all running up and down the driveway being silly and laughing.  As I stared my mind said, yes I am sure her looking over here will be like yup, 5 is insane...and then as if I was slapped awake from a dream Ziva ran by me with one of her infectious smiles and red cheeks from running down the driveway and I realized "oh, wait".  That pretty much sucked the life out of me.   So many moments like that have been occurring lately.  Apparently, aba has felt a bit similar.  Maybe it is just how this goes?  We are halfway through October and despite knowing the cemetery will call me when your monument arrives I hold my breath every time I drive up to you.  I am half-filled with excitement over potentially seeing it and relief when I see that it isn't up.  Aba and I want to do something "biggish" for the unveiling, COVID19 style that is. I am thinking of a zoom debut?  I also have started to think about what we will do to honor your one year anniversary.  The time seems to be sneaking by so quickly, I feel now would be a good time to start really figuring out what we want to do.  I wonder what things will be like in spring regarding Corona.  That will certainly play a role. I miss you beyond words!  We love and miss you so so much! Love always, Ema http://dlvr.it/RjX7Bl
http://dlvr.it/RjXZTJ

36 weeks

Dear Sonzee,  We survived our first Simchas Torah without you.  I know if we had ever asked you, that would have been your most favorite holiday.  I remember how initially aba didn't want to take you to dance around the Torah when you were an infant because "you wouldn't like it", but I made him anyway.  I told him there was no way he could know when he hadn't even offered you the opportunity, so with me standing from the woman's section, I watched eagerly as he pushed you around with everyone dancing with you.  Meena and her friends always climbing into the stroller to sit practically on you, every other year someone broke the footrest or the front portion of whatever stroller or wheelchair we sent you.  You absolutely LOVED it.  I was SO beyond thankful things weren't back to enough normal here in Phoenix (for me at least) to have to go watch that dancing without you being there.  Aba wore you on his socks, did you notice yours are red? (I am going to get him some more of you) This weekend was tough, I won't lie, but I suppose there have been and will continue to be worse days.  Aba danced with your siblings around the counter and I had to really hide the tears in my eyes as I watched Noam hold onto Meena.  I wondered if you had been here if he would have pushed you or if you would have been pushed by aba?  I can sometimes picture you participating as if you are here, not sure if that is better or worse.  It certainly makes pretending I am ok near impossible, but I am pretty smooth at this point at getting passed the moments unnoticed.   The issue though is then in talking to Auntie A thinking I am fine and then being unable to get through the story without the tears.  I went to tell her our across the street neighbors had their 2nd grandchild.  I saw them get out of the car and I could tell with all of the items being taken out there was going to be a newborn baby to follow.  I started to daydream back to the times of Laeya and Tzvi and I was thinking about how we used to be like that, parents of two.  Ziva was over playing with your siblings and they were all running up and down the driveway being silly and laughing.  As I stared my mind said, yes I am sure her looking over here will be like yup, 5 is insane...and then as if I was slapped awake from a dream Ziva ran by me with one of her infectious smiles and red cheeks from running down the driveway and I realized "oh, wait".  That pretty much sucked the life out of me.   So many moments like that have been occurring lately.  Apparently, aba has felt a bit similar.  Maybe it is just how this goes?  We are halfway through October and despite knowing the cemetery will call me when your monument arrives I hold my breath every time I drive up to you.  I am half-filled with excitement over potentially seeing it and relief when I see that it isn't up.  Aba and I want to do something "biggish" for the unveiling, COVID19 style that is. I am thinking of a zoom debut?  I also have started to think about what we will do to honor your one year anniversary.  The time seems to be sneaking by so quickly, I feel now would be a good time to start really figuring out what we want to do.  I wonder what things will be like in spring regarding Corona.  That will certainly play a role. I miss you beyond words!  We love and miss you so so much! Love always, Ema
http://dlvr.it/RjX7Bl

36 weeks

Dear Sonzee, 

We survived our first Simchas Torah without you.  I know if we had ever asked you, that would have been your most favorite holiday.  I remember how initially aba didn't want to take you to dance around the Torah when you were an infant because "you wouldn't like it", but I made him anyway.  I told him there was no way he could know when he hadn't even offered you the opportunity, so with me standing from the woman's section, I watched eagerly as he pushed you around with everyone dancing with you.  Meena and her friends always climbing into the stroller to sit practically on you, every other year someone broke the footrest or the front portion of whatever stroller or wheelchair we sent you.  You absolutely LOVED it.  I was SO beyond thankful things weren't back to enough normal here in Phoenix (for me at least) to have to go watch that dancing without you being there.  Aba wore you on his socks, did you notice yours are red? (I am going to get him some more of you)

This weekend was tough, I won't lie, but I suppose there have been and will continue to be worse days.  Aba danced with your siblings around the counter and I had to really hide the tears in my eyes as I watched Noam hold onto Meena.  I wondered if you had been here if he would have pushed you or if you would have been pushed by aba?  I can sometimes picture you participating as if you are here, not sure if that is better or worse.  It certainly makes pretending I am ok near impossible, but I am pretty smooth at this point at getting passed the moments unnoticed.  

The issue though is then in talking to Auntie A thinking I am fine and then being unable to get through the story without the tears.  I went to tell her our across the street neighbors had their 2nd grandchild.  I saw them get out of the car and I could tell with all of the items being taken out there was going to be a newborn baby to follow.  I started to daydream back to the times of Laeya and Tzvi and I was thinking about how we used to be like that, parents of two.  Ziva was over playing with your siblings and they were all running up and down the driveway being silly and laughing.  As I stared my mind said, yes I am sure her looking over here will be like yup, 5 is insane...and then as if I was slapped awake from a dream Ziva ran by me with one of her infectious smiles and red cheeks from running down the driveway and I realized "oh, wait".  That pretty much sucked the life out of me.  

So many moments like that have been occurring lately.  Apparently, aba has felt a bit similar.  Maybe it is just how this goes?  We are halfway through October and despite knowing the cemetery will call me when your monument arrives I hold my breath every time I drive up to you.  I am half-filled with excitement over potentially seeing it and relief when I see that it isn't up.  Aba and I want to do something "biggish" for the unveiling, COVID19 style that is. I am thinking of a zoom debut?  I also have started to think about what we will do to honor your one year anniversary.  The time seems to be sneaking by so quickly, I feel now would be a good time to start really figuring out what we want to do.  I wonder what things will be like in spring regarding Corona.  That will certainly play a role.

I miss you beyond words!  We love and miss you so so much!

Love always, 
Ema


The Mighty Contributor

Thursday, October 8, 2020

35 weeks 2 days 21.5 hours

Dear Sonzee, 

I am sorry it has taken me a bit to write you another letter.  I can't really say that it is because I didn't have the time, it isn't the actual time, it is more that for some reason it was just too difficult to find the time from the emotional standpoint.  I find sometimes that my avoidance behaviors tend to win out more often than not, so again, I apologize.

This week is fall break and we are up at Bear Pines.  I know you know because a few minutes after walking outside I am greeted with what I have come to know and appreciate as one of your signature "Sonzee breezes".  It was one of those things I initially chalked up to nothing and then over time, I leaned into the craziness.  It seems fitting that our nonverbal communication has extended beyond your little lifetime. and for the most part, there is a huge comfort knowing you are around me, but it can also randomly make the tears just pour out.

Bear Pines is almost all finished being painted.  We really channeled our inner Sonzee with the color, I was worried about it coming together, but it really is perfect.  The weather is getting cooler and I personally am really excited.  I found a company online that provides outside ice rinks, and you know how aba and Tzviki have always wanted a rink in our yard, well, this winter I am hoping it becomes a reality.  I also strung some porch lights, I think that is the term.  Aba has been nagging me to get rope lights, and so I did, and they look awesome!  As a gift to all who trip on stairs, I also bought myself the gift of motion lights for the stairs on the front porch.  I have been having a blast integrating everything with Alexa, I can even have it unlock the front door.  

Laeya has been trying to get the squirrels to come from Mr. Vince's house to ours, but it has been hard to compete with his array of nut bins.  She was finally successful this time.  Noam went outside and scared tiny tail away, but there will be a red picnic table arriving this weekend so we will be upping our game.  The squirrels have been jumping from Mr. Vince's trees onto our roof then into the trees to get to the front of our house, it is so neat to watch them.  This morning, one made a pit stop onto the porch while I was sitting there writing this letter.  I think Noam might have played a role in that little chase, he made it successfully into the tree when he realized I was on the couch.

I guess it's time for me to remind you that we miss and love you!

Until next time.

Love always, 
Ema

The Mighty Contributor

Saturday, October 3, 2020

8 Months




Dear Sonzee Bear, 

It is surreal it has been 8 entire months since you died.  Aba said the other night how it can't believe how it was only 8 months ago because it feels like a lifetime ago.  I added in, but yet yesterday.  It is honestly so difficult to explain how time warps itself even more than the intangible concept it already is.  It is much easier to use it as a measure of telling someone the time of day vs trying to use it as a way to explain the gaps in time, both forward and back.  A lifetime seems accurate in terms of how much our lives have shifted since you were here but all those times are so engrained in my mind I can vividly remember them as if they all were just yesterday.

This week a friend of your's mom called and we talked for over an hour, tears were shared on both sides for different but yet similar reasons.  My heart literally understands and feels the pain of confusion in trying to make sure she is doing her absolute best, tinged with the always present lingering doubt of wondering if this is some sign that means she should alter the extreme interventions.  That feeling as a parent doesn't wane.  There is always doubt over whether too little or too much is done.  I said to her the words someone said to me, that I now to truly know is the truth since I have been living it for the last 8 months.  No matter what choice is made at the time, you will over-analyze each and every one forever, wondering if it was the right one, so make the choice in your gut .  There is hardly any solace in the day to day and even after the lifetime that has passed there isn't always a constant state of peace. 

I felt like within the last few days death has surrounded me.  Children your age going onto hospice, a high profile mom losing her baby.  I am honestly not even able to process other losses yet.  I don't know how to describe it besides numb,  Maybe it is to protect myself from going too far back into an emotion I haven't yet fully allowed myself to accept and deal with?  I am not sure, but there is a part of me that wants to just reach out and wrap my arms around these people and offer some sort of support, but yet there is a part of me that simply, just cant.  I feel drained and exhausted over the prospect.  I wonder if that will change?  I know from others I am close to who's children died before you, that its normal to get dragged deeper into grief from other children dying or on that road.

My heart is really heavy this month.  The whole wacky concept of time is playing with my mind and emotions.  We are so close to 9 months, which means a year is around the corner, which is just something so challenging to grasp.  Luckily my mind gets overwhelmed when I start down that rabbit hole and it literally shuts off so I don't have to even consider processing it, but then the current time period smacks me in the face.  So for today and the next 28 days I will focus on it only being 8 months and all the special things we will continue to do in your honor, until another month has gone by,

Love always, 
Ema  


The Mighty Contributor

Tuesday, September 29, 2020

34 Weeks 1 day

Dear Sonzee, 

The last week has been another tough one. Yesterday was Yom Kippur and the book of life was sealed.  I can't figure out how it makes me feel to know last year you weren't written in it.  Your cause of death determined and your fate essentially written in stone.  I distinctly remember praying that if you were not inscribed into the book of life that you be taken peacefully.  I am grateful that at least that request was honored to its fullest potential possible.  Besides the fear of the unknown, one of my biggest fears was you suffering in your death.  Thankfully you never did, or at least never appeared to, so I hope that was the case.

Both your sisters decided to compete for number one injured last week.  Laeya fractured her hand, and Meena somehow removed a chunk from her eye.  We see the specialist for Laeya's hand tomorrow, and Dr. Cassidy squeezed us in the same day to take a look at Meena's eye (more proof there is a g-d-hehe).  He made a comment about how it didn't need stitches and I honestly for a moment chuckled and thought he was kidding until I realized he doesn't joke, eek and phew.  She is on eye meds for a week and then drops for the entire month of October.  During Meena and Noam's spring appointment Aba let Dr. Cassidy know you left us, but it was the first time I have stepped foot into that office since you last went.  I ran into a parent of a kiddo I worked with last year at FBC west, she and then Miss. Monique both came over to talk to me.  The more I slowly begin to venture out, the more I will have to remind myself people haven't seen me yet in person to give their condolences.  It's one of those moments where it makes me swell with joy that you meant so much to people and they haven't forgotten you and want to let me know that, paired with can I hide behind sunglasses in a corner and not draw any attention to myself.

34 weeks.  How has that even happened?  I had been thinking the last couple of days how your siblings haven't mentioned too much about you.  Noam did scream for us to bring him his "Sonzee and Me" book the other night, but the other three are pretty quiet.  Then yesterday Noam did one of his bite down on dumbo while he shakes his body moves that he thinks is funny and cute and Laeya looked like she had seen a ghost and told him to stop doing it.  He of course being Bossy Baby thought he was being super cute, so did it again, to which she said "stop, you are reminding me of when Sonzee had a seizure and it scares me".  I knew immediately what he was doing, so I told him sternly to stop because he has done it in front of me a few times and I also DON'T LIKE IT ONE BIT.  Maybe in another lifetime it would like a cute 2 year old just squeezing his hands and body, but if any of us never again see a human shake it would still be too soon. 

I officially booked our first family pictures that won't have you physically in them.  I think the we are doing the next best thing to having you in them.  I am almost getting excited to have them taken and to see them.  I haven't decided if I will put them throughout the house, but baby steps.

Anyway my love.  I can't believe this weekend it will officially be 8 months since you were last here.  We miss you beyond words.  We love you SO much!

Love always, 
Ema

The Mighty Contributor

Thursday, September 24, 2020

Happy 5th Birthday Corrinne

Dear Corrinne, 

Today is such a special day, it is your 5th birthday.  So many of Sonzee's friends have turned 5 since she has passed, but for some reason, today, your birthday is the one hitting me the hardest.  Maybe it is because you were the only friend we had come share in her mock 5th birthday party?  Maybe it is because of the parallels in yours and Sonzee's journey?  Maybe it is because I haven't let myself fully grieve over Sonzee never officially turning 5 and I was so afraid for your family that they would end up like us and today would be happening in a completely different manner?  Maybe it is because I personally feel so invested in you turning 5 that I am a mixture of relieved, ecstatic, and beyond grateful that you have made it to this milestone?  Maybe it is because I know that you being at Bear Pines somehow means Sonzee is celebrating with you and it feels like life is coming full circle?

You are such a special girl to so many.  We have been so blessed to have you and your family in our lives for 4ish years.  Your mother is one of the few people in this world that I can and have shared my darkest fears and feelings with and who has been there to help me feel almost normal the last 7.5 months.  She is for sure your fiercest advocate and a primary reason you are able to celebrate in all of your glory the amazingness that is today.  Sonzee was so blessed to have met you in FBC's Friday group, it was because of your story that we finally took a tour at Ryan House.  You and Sonzee shared a knack of making your (same) GI doctor experience firsts with your insane dysmotility...but you, my friend, continue to just travel along with a divalicious smile, painted nails, beautiful sassiness, and a requirement to travel with a mini fridge.

I am just so thankful that you honored us by accepting the invitation to Bear Pines for your special day. I hope it is your best birthday ever, I don't doubt for a second that you will be and have been spoiled beyond comprehension, and rightly so.  I hope you know how much your life has mattered to ours.  On your 5th birthday, we wish you a year of few hospitalizations, no new diagnoses, calmness, health, happiness, and amazing memories to be made with your friends and family.
   

Love, 
Sonzee's Family


The Mighty Contributor

Tuesday, September 22, 2020

Avoidance

During our last grief group, the question was asked, "how are you managing your grief?".  These questions don't always yield a cookie cutter answer, I suppose that is the exact point of why they are asked.  Some people volunteered to share their responses, I had been thinking about my response wondering how exactly to frame it.   I wondered if my answer was going to be right. Knowing that whatever my answer would be, is the only right, but yet not convinced.  Then it became my turn.  I mentioned how I blog, I had forgotten or rather at the time didn't realize that me posting my daily throwbacks was also something I had been doing as a method, and then I said what I consider the biggest way I have been managing my grief...by avoidance.

I can think back to all of the amazing grief support books I engulfed myself in immediately after she passed.  I can see the words written stating how letting yourself fall into the grief eventually gets easier.  How it is better to allow yourself to allow the grief to happen when it presents itself because if not it can eventually be more challenging to push it down, and then you are hit by a tsunami rather than 6 foot waves.  I remember thinking about how I will make sure to feel it always and to deal with it as it comes.  It is comparable to all of those things you tell yourself you either will or won't do when you first become a parent.  If I had said openly to anyone on this journey that my intention was to never let grief suck me in I am sure they would smile and nod and think to themselves, "ya okay".  I can now remember every time I have reminded myself over the last 7.5 months of these facts when I force myself to swallow the grief up and close my eyes in my best attempts to squash it.  I can see the words written on the page every time I tell myself nope, not now, don't cry, later, now isn't the time.  Avoiding has become my "management".  It is honestly so much easier to act like everything is fine than acknowledging the reality.  Trust me when I say, the pain is far too horrible to let it take over at any point.  No, I don't want to deal with it.  Yes, it is easier to lie and pretend everything is fine.  

It becomes this endless grief version of "if I give myself a cookie".  If I admit that she is gone, then I have to admit that it hurts.  If I admit it hurts that means I have to allow myself to cry.  If I allow myself to cry that means I have to admit that this pain and the reality is real.  If I admit that this pain and the reality of it all is real, then I had to admit that she isn't coming back and that this is going to be forever.  If I admit this is forever, it is too much so she can't be gone, there is nothing to mourn because she isn't not here and therefore I don't have to cry and I don't have to feel this horrible pain.  To admit to myself at only 7.5 months into this journey that it is going to be like this forever is way too much to accept.  So for now, I acknowledge we are no longer a physical party of 7, and I acknowledge that I am not an active member of the special needs party, but as far as really managing my grief...avoidance of the realness of the situation feels much much easier.

The Mighty Contributor

Monday, September 21, 2020

33 Weeks

Dear Sonzee, 

For weeks, essentially since right after you passed I type in "countdown timer" to make sure I am writing the accurate heading.  You would think since it is just the following week I wouldn't need that confirmation, but each time I type 02/03/2020, 1:08pm, and check the box that I want the countdown to include weeks, days, hours, and minutes.  It almost mimics a pregnancy countdown, except there isn't going to be an end at 40 weeks.  

This weekend we celebrated Rosh Hashana.  I ordered a beautiful flower bouquet in your honor and it sat with us at the table.  I moved it to the counter now in front of your yahrzeit candle holder that still remains on the counter.  I had some flowers from our last Shabbat at Bear Pines in there last week, but they finally needed to be purged.  I ordered a bunch of 24-hour votive candles inside red holders and they came today.  I will use those moving forward for all of the times we light a candle in your honor.  I hope Saba likes red because he will get one by default.

I started to order winter clothing for your siblings.  Bubbie and pop-pop got them their jackets and what not with their help.  It is really exciting to be preparing for an additional season to just "Phoenix".  I did have to google clothing for winter.  I know it is technically early, but our Bear Pines neighbor told aba that sometimes it can start to snow in late October.  It is still so crazy to me that we live less than two hours away and the weather is that much different, but as a comparable it is currently 54 there and 84 in Phoenix.  The warmest day there is Thursday this week with a high of 80, otherwise, all the highs are in the 70s and the lows in the 40s.  We all have the same fall break this year, so we will be heading back.

Auntie A has purchased some fun new work items and we will soon be having some custom mugs and what not for Bear Pines.  I love her desire to play because it keeps benefitting Bear Pines.  I am wondering if I should just leave a card with her etsy info randomly around the house to send some subtle messages to guests.  She has really helped everything in my mind come out perfectly. 

Anyway, I cannot believe it is another week without you here.  Remember you are loved and missed.
Until next time.

Love always, 
Ema

The Mighty Contributor

Wednesday, September 16, 2020

32 weeks and 2 days

Dear Sonzee, 

I am sorry I am late writing to you.  I feel like this past week was one of those filled with so much chaos but yet in the end, there was an overwhelming sense of peace.  Bear Pines is officially open for business.  I say it with italics because we have our first guests staying next week, but the website is not 100% ready for sharing.  Aba and I spent 5 hours together finishing everything up this past Sunday.  The painting portion hadn't even been started, so Aba is going to drive up before Rosh Hashana starts to see it in person and bring back the 3 loads of bedding laundry I ran out of time doing that I brought back to Phoenix.  (I am really pushing hard here for a new washing machine...he hasn't exactly taken the bait yet, but I sense it could be on the horizon).

It feels amazing to have checked off essentially all of the items on the inspection report.  We also took down the eyesore of a shed in the backyard and it will be converted into a playhouse for your siblings.  It is close to 500 square feet, so it is almost a mini house itself.  I will be purchasing a matching wind chime for their porch in your honor.  I mentioned to a friend I would most likely cry when everything was all finished, and as I took a look around Sunday I did just that.  There are just so many emotions.  I know you are with me when we are there.  You influenced literally every nook and cranny, and yet this house wouldn't be ours if you were still here.  It is so difficult to put into words everything that is my mind regarding that simple fact.

I am on week 6 of direct therapy this week and during the entire virtual school year, not one kiddo on my caseload had seized during a session, until yesterday.  Just about every single child I saw yesterday, did.  I don't know what to make of it.  I mean essentially absolutely nothing because it had nothing to do with me, but I did joke with Auntie A that since I was in your bedroom for all my virtual sessions, you wanted to ensure I remembered how that was you all the time.  I didn't even know how to feel...my heart breaks for every single parent, and all of the kids.  I wanted to scream through the screen how I can relate to whatever they are feeling, I still have this need to say "ME, OVER HERE, I GET IT, MY DAUGHTER DID THIS ALL THE TIME.  I LIVED THIS LIFE, I WAS ONCE IN YOUR COMMUNITY."  Instead, I just stare blank-faced, wondering if at some point I will have to suddenly turn off my screen because it reminds me too much of that life, the one I am for all intents and purposes, not really part of anymore.

On that note, I emailed one of your doctors today to say I missed her.  Weird huh?  I had composed an email so many times, but always deleted it, today I finally pressed send.  It's so hard to have not only lost you but lost so much of the life we lived for close to 5 years.  Close to 5 years that were literally an entire lifetime for you, but for us just a small but yet large portion.  These doctors were intimately attached to us and knew us on levels that some of our friends won't ever.  To have lost our frequent visits feels like adding salt to an open wound.  It seems I am still trying to figure out my place, I think that is going to be an always, forever, and from now on sort of a deal.  I received a reply within an hour (I am honestly not one bit surprised), shared it with aba, but I can't reply.  I tell myself it's because it feels almost awkward to reply so quickly, but I think the reality is that I am stringing it out so the conversation lasts another day?  

Someone asked on Facebook last night about doing the clay hand molding.  I was so excited to share our experience, I even included the 39-second video pop-pop took for the comedy.  Of course, that resulted in me watching those 39 seconds on repeat for over an hour.  It was just 4 days shy of us officially having to say goodbye, but looking back at it, it was such a fantastic experience and will always be such a great memory.  The screaming, the laughing, your siblings being absolutely ridiculous, you being a fairly decent sport considering, your entire life and our life with you captured perfectly in 39 seconds.  Although, I do wish pop-pop kept the camera rolling...there were definitely some gems of verbal exchanges that occurred only after it was shut off...but I am so grateful for what he did record.

Anyway my love.  My heart misses you beyond words.  I hope you can feel that and the love from down here wherever you may be.  I hope wherever you are is treating you better than we ever could. Until next week.

Love always, 
Ema

 

The Mighty Contributor

Friday, September 11, 2020

What's there to say

I have been part of the CDKL5 support group for over 5 years.  For many years I was extremely active, sharing our experience with Sonzee and Sonzee specific related information with no problems.  The older she grew and the more involved she became I found participating to be extremely emotionally draining.  I always hesitated because those who were new members would eventually find their footing and until they did, they didn't necessarily want to see a 3 or 4-year-old potential version of their child in Sonzee.  Maybe that was my personal take because children presenting like Sonzee don't necessarily reek the hope the newly diagnosed parents are seeking.  And now...220 days since she passed away, I represent everything they fear, so what's there to say?

This week a new mom introduced herself and I am assuming my 30-day snooze needs to be reset because I saw it.  This week for the first time in months I scrolled down the comments and read everyone introducing themselves and their child.  Then for the first time in I don't know how long I clicked into the comment space, but then I sat there, rereading the introduction of the mother, reading all of the comments, tears filling my eyes and left wondering, what's there to say? 

What is there to say besides, I once had a daughter who went through all of the same exact challenges as your child and despite the hope you have, the reality is, at some point, they might finally be at peace, but that means you are part of the other CDKL5 group of bereaved parents?  There is no way to share her journey without stating the obvious fact, she isn't here any longer. Who wants to hear that?  Because I don't even want to say it.  

Really, what's there to say?

The Mighty Contributor

Wednesday, September 9, 2020

31 weeks 2 days

Dear Sonze, 

It's been less than a week since I last wrote to you, but I didn't want the week to slip by.  It's funny, even though it is never that long between my letters to you, I find my mind fills with thousands of thoughts I have to sort through that are all related to you.  This week one of your friends is having a challenging time.  It seems whenever this has happened since you have been gone my brain and my heart have such a difficult time.  I can't seem to figure out how it makes me feel or what I should be feeling.  I can't figure out what I am thinking, I can't make any sense of any of it and I don't even know how to try and start to.  Then it starts to feel like every CDKL5 sibling of yours is having a rough time and both my mind and heart go into shutdown mode.  It becomes too much.

The further into this journey of navigating life without you, the more obvious it becomes that time is not going to change any of this.  It is just going to be something that passes by and something that makes things more confusing.  Supposedly the benefit to time is that I will learn to adjust in terms of compartmentalizing or simply figuring out various ways to live with the grief, whatever that means?!  I am still waiting for someone further on this journey to tell me that pain stops, that the overall hole all throughout me will become filled, and that the challenges of life without you will disappear.  (sidenote: I probably wouldn't believe them if they said those things anyway, but I will wait)

Someone shared with me a Facebook post about family pictures from their friend who has sadly also lost a child.  I wanted to just post it myself and say "this".  I was hoping this person was behind me on the journey so I could maybe hope that the fact that our feelings are exactly the same wouldn't make me feel slightly defeated.  Sadly for me, this mom is further along, so while it feels reassuring to know my feelings are similar to others in the same position, it wasn't uplifting to know that the feelings I have most likely won't go away.

This week I mentioned to one of your friend's mom's that I have zero knowledge of 5-year-old Sonzee seizures.  The statement struck me after I said it.  Firstly, how was it that you didn't even live 5 years when at times it felt so long?  How is it that I gained so much knowledge in just 4 years 11 months and 22 days?  How is it that life goes on for everyone your age and you will forever remain "8 days shy of 5"? How is it I still have so many tears?

Despite it all, I still wouldn't take you back to have you seize "just" one second more or to have to be hooked up to a plethora of tubes or to have to take mega doses of multiple medications or to be limited by and in your body.  Your body is where it needs to be, it's just indescribably painful that that place isn't with your siblings, aba, or myself.  We love and miss you beyond words.  Maybe we can meet in the space between?  

Love always, 
Ema

PS: It is supposed to be 33 tomorrow with a high of 58 and Ema does not have her puffy jacket everyone makes fun of her for wearing in the 70s so if you could be gentle with your breezes that would be much appreciated.

The Mighty Contributor

Thursday, September 3, 2020

7 Months



Dear Sonzee, 

Yesterday marked 2 years since we gathered with friends and family and saw your swim spa lifted 100s of feet into the air by a monstrous crane that blocked our entire street in order to place it in our backyard.  The spa still remains, but 7 months ago you left it for only us to use.  I haven't entered it yet once.  I tell myself maybe I will take up swimming laps, sit in it to relax, or maybe go inside to be with your siblings when they go, but I just can't, I am unsure if I ever will.  Aba made sure to take you in as much as possible during your last week, I wonder if I should've let him take you just one more time?

When I think back to those last few weeks with you, it was such a balance of fighting against time but letting you rest and being as comfortable as possible.  I think we did a good job? I am relieved 7 months later there is no doubt in my mind we did what was best for you.  What doesn't feel any better at all is that we had to make any of the choices we ever had to for you and that you aren't here with us.  I wish I could explain how much I truly do believe that you are in a better place, but simultaneously wish you had a different mission that didn't require you to suffer and then leave us so quickly.

7 months.  In just 2 weeks we enter into a new year on the Jewish calendar.  One you won't have even been in for a second.  That is a challenging concept to process.  It seems more difficult to swallow than entering into a new month.  We are filling out a 1/8 of a page memorial text for you and saba for the Yizkor book.  It was difficult to figure out what to say. I will admit Aba and I made some jokes in the process.  We couldn't exactly write "hope you're doing well", or "we are so proud of you", so we stuck with "In memory of".  I am honestly relieved corona will keep me from going to shul because I am still not ready to even just sit in the back and listen to that service, but I do need to refresh my red candle stash.  

Don't forget you are forever loved and incredibly missed.  Whenever I am ready, I hope you know where you can find me.  I miss you beyond words little bear.

Love always, 
Ema


The Mighty Contributor

Monday, August 31, 2020

30 Weeks

Dear Sonzee, 

It's been 30 Monday's since our last snuggle.  I still cannot figure out how so much time has passed but yet it feels like it was all yesterday.  This week your siblings asked each other and aba and I what our favorite two memories were of you.  I could tell aba was as frozen as I was with the question and I was thankful I was able to give a quick response without completely falling apart.  It really makes me so happy they bring you up and are comfortable sharing their feelings about you, but it is still hard for me to always manage to keep the tears at bay.  There are times when I have no problem talking about you in an upbeat happy manner, and then other times where it's hard to form any thoughts without the tears and the lump in my throat. 

I have found myself lately staring at the sky trying to see if I can find some sign from you in the clouds.  I keep wondering if I stare long enough I will be able to make myself think you are sending me some sort of message.  All the while I think of how insane it is that I am actually doing what I am doing, because what am I actually expecting to see?  Honestly, I keep trying to find signs of you all over...I think my mind thinks that if I do then it means you are closer to me?

So many of your CDKL5 siblings are getting older, their families are faced with all the emotions that come with life with a special needs teen or adult.  Something we won't ever have to experience.  Something we won't ever have any knowledge of since you left us so much earlier.  I have started to integrate more into the bereaved mom support groups.  Reading the posts still but never having commented, liked, or mentioned your story.  I am not exactly ready for that just yet, there are more times than not that I see a fellow bereaved mom write a post that I am like "yes, that", or "yes, you are not alone".  I just don't think I can bring myself to admit I belong in that group.  I am feeling less and less like I belong in the special needs groups.  I still keep myself in them but typically they are muted and if they pop up, I hardly comment.  

Today happens to be 12 years since Aba and I got married.  When I think back to that day when we were essentially two kids with no cares in the world but a blank canvas, I never thought that I would find us listing our accomplishments and adding buried a child.  It makes me really wonder what will have occurred in another 12 years when we should have been celebrating your sweet 16.  It almost makes things worse knowing and actually seeing that there is always going to be something of yours that should've been but wasn't. 

We brought you a special rock from Flagstaff that sparkles, and one of Tzvi's friends painted you two pretty rocks that are now placed by you.  Auntie A is working on your 7-month glow rock and MoMo asked to paint you his own as well.  We gave the final approval for your stone, bench, and candle holder.  They look perfect on paper so while I won't ever be ready to see them physically standing, I am looking forward to having a bench to sit with you and to see them in person.  Any time over the next 2-3 months we should be receiving the call that are ready to be unveiled.

I hope you are doing well and know you are loved and missed.  Please come and visit someone I know so I can hear how amazing you are doing.  

Love always, 
Ema


The Mighty Contributor

Friday, August 28, 2020

Floating

I constantly find myself floating between two worlds, a world that included Sonzee as an active member of our family and a world that no longer does.  I think floating is the best word to describe my feelings because it describes an act that is noncommital, unsettled, and indicates fluctuation and variability. I am not fully part of either world, but I am also not far from either at any given moment.  I hover in between both because it seems impossible to leave the world of her being a physical member behind and to fully accept the world where she isn't here. Will I ever be ready? Do I even have to be? 

A significant part of being in this floating position is feeling confused and a sense of guilt or injustice depending on which way I go. I can't stay fully in the past, it is physically possible and isn't really healthy emotionally.  I can't allow myself to move completely forward either because she needs to come. There are times when seemingly straight forward questions, such as "how many children live in your house?" lend themselves to more complicated answers. I don't know what the right answer is.  The question itself is innocent, direct, and written in an almost creative manner.  It is written to yield a numerical value, a value that is the absolute current truth, but yet when writing it, it leaves out so much.  The answer feels like a lie to write down on the paper because it wasn't always the truth.  

Math is direct, it is black and white, one plus one will always equal two.  But, thankfully in math, you always need to "show your work". You have to explain how you got the answer because even if you know how you got to the answer, not everyone else does.  The answer might end up being more than the simple question that was asked required, but life isn't always simple. 

Maybe floating serves a purpose? Maybe it is some sort of mental balance? Maybe it is where I will always find myself to honor life with her and life since she physically left.  Maybe it is exactly where I need to be? 


The Mighty Contributor

Tuesday, August 25, 2020

29 weeks and 1 day

Dear Sonzee, 

I am having one of those periods where I feel like I am being consumed by my missing you.  It's the time where the tears aren't far from falling or just fall on their own and it is more difficult to swallow them and pretend like I am not actually a bereaved mother.  I actually commented in one of the "special needs moms" groups I have been unable to leave but typically have on mute and I wrote about you had given me a plethora of experience in the area the poster had stated but that you had died.  It was met with a fellow bereaved mother who buried her little girl, also at the age of 4 just shy of turning 5...12 years ago.  She also had seizures.  I went out of my comfort zone and sent her a private message.  I supposed you are bringing her into my life for a reason, so I will embrace it.

Last week a few of "my kiddos" at work received some of your items we had just sitting around collecting dust.  I decided I am going to compile a book of pictures of everyone who is able to benefit from your things, I just decided as I am writing this that I will call it "Sonzee's Stuff".  It will be another one of those double edged swords, but ultimately knowing we are able to help others keeps it possible.  I am working on a couple of other projects in your honor, and I am so proud of your story and the continued chapters that are still being written without your physical presence.  

I haven't made it "Facebook official" yet, but your brother is retiring in his red, white, and blue hockey team for a team with two different colors.  I am waiting for all of his gear to be ordered or for him to at least sport a team shirt beforehand.  I keep wondering what you would think about no more red hat or comfy red boots?  I mean lets be honest, you only used the boots as projectiles anyway, so maybe you wouldn't have minded to trade them in for a different pair?  I am nervous for the day it comes to fill out the extra items form because I always made sure you had your own set of items, and made your sisters share.  I won't need an additional blanket, an extra shirt, sweatshirt, or beanie just for you.  Crazy the things my mind tries to prepare itself for.

The finishing touches are almost all complete here at Bear Pines.  I think once the final picture is hung and the interior is complete I am just going to sit on the floor and cry.  It's just such an overwhelming feeling to know this entire house is based off of you and your essence.  Anyone who stays here and knows you will be able to pick up on all the little bits of Sonzee inspiration.  I might be setting myself up for disappointment, but I can imagine those who knew and loved you having to hold back a tear or two themselves when they walk through the door.  It's such a crazy thing to feel you here.  So much so I haven't physically been to your grave in over a week and I am doing okay.  (Auntie A and Uncle Mathias checked on you after the storm last week and Facetimed me while they were there, they appreciated your extra special breeze...and Auntie A was better prepared this time.)

I finally gave in and allowed your sisters to watch Descendants.  It was not at all what I anticipated, but to be honest I never even looked into what it actually was and thought it was meant for older kids. I am somehow forgetting the whole aging process and that if you should be 5.5 than your sisters can't still be.  It was a really good movie honestly, and so naturally it led me to listen to some of the music from all 3 movies, and so I will leave you with this.

And you can find me in the space between
Where two worlds come to meet
I'll never be out of reach
'Cause you're a part of me so you can find me in the space between
You'll never be alone
No matter where you go
We can meet in the space between
Love always, 
Ema 


The Mighty Contributor