2020

A year ago I sat at my desk trying to find a way to convey my deepest rooted fears and feelings in my yearly recap without saying too much.  My heart felt this impending fear that 2020 was going to be Sonzee's last year.  I couldn't quite articulate my feelings without feeling like I sounded insane or as if I was premediating something not even humanly fathomable, but I can still feel the uneasy emptiness that consumed me as I wrote these words

I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best."

Rereading those words I take a deep breath and try to swallow the lump permanently stuck in my throat.  I try to use my magical powers to push the pain and heaviness that now permanently sits on my chest to the space that I am still trying to create within so I can learn how to live with it.

2020 was the year that definitely began with uncertainty.  I spent the first 17 days burying the pit that sat in the bottom of my stomach.  Sonzee went to her usual beginning of the month TPN appointment and we even visited with her palliative care dr and the community palliative care social worker.  We had gotten to the point where Sam and I required that buffer so we wouldn't end up in an all-out brawl over the vastly differently viewed same situation we were both in.  A day after her visit she had her routine GJ tube change where I received a call a classmate had been diagnosed with the flu.  I shrugged, nothing we could do now. 2 days later and 18 days into 2020 Sonzee spiked a fever.  Her sister's 10th birthday was now tainted with the potential of it being canceled.  3 days later, with a fluid retaining Sonzee,  and a negative flu swab (done to confirm my real fears) it was evident (to me and I am fairly certain nurse Paige) CDKL5 was going to win.

2020 was the year I learned far more than I could have ever wanted, thought of, or knew was possible about watching someone die.  2020 was the year I learned that the movies aren't accurate in their depiction of death and hospice.  After 5 times and 10 years of calling out birth times, 2020 was the year I called a time of death for my 4th child.  It was also the year I became a mom of 4 live children and 1 child in heaven.  

2020 became a year that my discussions changed from "I have a child who has special needs" to "Well, actually I have 5 children, but one of them passed away and she had special needs".  It was a year I spent trying to figure out how to parent a child no longer here while trying to figure out how to keep her spirit alive and continue to parent the children still left in my care.  

2020 was filled with more tears than I thought could be humanly possible to have.  It was also a year with so much love and support from those in our community both near and far that that fact alone brings me an overwhelming abundance of happy tears. 2020 was also the year that I learned you can actually run out of tears, but that becomes short-lived and they will inevitably find their way back into your eyes.

2020 the world shut down for a virus that kills less than the percentage of the likelihood of having a Sonzee, and I admittedly spent a large portion of my time struggling with that fact.  To escape the reality we bought a house in 2020 for ourselves in honor of Sonzee.  It is a place like a cemetery in that I know her spirit is there, but there are no active memories of her presence, so it's a dual-edged sword.

There was definitely laughter and smiles throughout the year and many positive gains all because of our Sonzee bear.  In 2020 Sonzee's outdoor classroom was created in her honor, as well as Sonzee's PEMU PJ closet gave out its first pairs of pajamas at Phoenix Children's Hospital.  Our relationships with our close friends became even closer as we now share a closer bond due to the loss of our little girls.  On the same token, because of Sonzee's death, I was able to share my expertise with a close friend of mine as she went through the same heartbreaking experience, making things come essentially full circle. 

I am unsure how to celebrate the end of the last year Sonzee ever lived.  I am even less sure of how to welcome a brand new year that she won't ever be part of, but one thing is for sure.  While 2020 was the ending of volume 1 of Sonya's Story it is only the beginning of the amazingly beautiful legacy that one little nonverbal, immobile, and a medically complex little girl started all on her own after living just 4 years 11 months and 23 days of one hell of a roller coaster of a life.

Monument Dedication Letter to Sonzee

Dear Sonzee,

The last time I wrote you a letter and read it aloud to you here it was 47 weeks 1 day and between 18-20 hours ago.  A lot has happened since that day and yet nothing at all.  Time has both flown by and stood solidly still.  I might have broken some unspoken religious rules by visiting you as often as I have over the last 46 weeks, but in the beginning, it was a way to make sure I was still physically taking care of you and since then the emotions and reasoning behind my visits have constantly morphed.  To be honest, in the beginning, it was a little “easier” and then the further the “last time I saw you” got, the more difficult it has been.  In October I started to be filled with a mixture of excitement and utter panic over the potential delivery of your monument.  It wasn’t until I found myself in the office nonchalantly asking if anyone knew when it would be arriving and finding out it was coming “tomorrow” that I realized the panic was really a mixture of panic, pain, sadness, finality or rather reality.

 

The chief purpose of dedicating a headstone is to mark the final resting place of a loved one to honor his or her life and to serve as a focal point for people’s memories.  Well my little girl, I hope and pray that this monument has honored your life to the fullest.  We chose a book, because well it was just obvious. Volume one, which is represented here, officially started on February 11, 2015 and ended on February 3, 2020.  Your 4 years 11 months and 23 days were filled with more than these granite markings could ever share, but the essence can be found on the cover, in the stone pages, and when delivered within the yahrtzeit stone and bench.  You will always be Sonya Ahava the daughter of Shmuel Baruch and Reena Tzipporah.  You are more famously known as “Sonzee” and as the yahrtzeit candle plaque will also state, Chooper and Sonzee Bear; we also included a bear and your mermie etched by your names to make sure we captured all of your aliases.  The bench that will be placed at the front will honor the impact that the Foundation for Blind Children had on your favorite song, Hooray for Sonzee with a set of pompoms and when I eventually sit here rereading all the words in front of me, I will undoubtedly start to sing (maybe I will even bring the gold pompom and embarrass both of us?!).

Your names mean wisdom and love, which are perfectly depicted with a tree surrounded with hearts. 

 

Aba and I had the most difficult time finding the right Sonzee quotes.  The one in English

“Tell me the facts and I’ll learn. Tell me the truth and I’ll believe. But tell me a story and it will live in my heart forever” seemed to really capture you and your entire story.  So many people have learned about CDKL5 and about the inaccurate stigmas paired with developmental disabilities because of you.  So many people believed in your journey, and because of your story, you will live forever in so many people’s hearts.

In June of 2015 Rabbi Oirechman and Chanie sent us a book, “Dignified Differences”, which included motivational and religious quotes paired with stories about children with special needs.  The inspiration of the book was about a little girl named Zlata Esther, aka Zlatie who was diagnosed with Autism.  I read the book in 2015 and put it above my desk.  When it came time to find a Hebrew quote because aba really wanted one, an image from the book popped into my mind, it was Zlatie’s tomb.  The inscription was from song of songs (4) and when aba and I read it we knew well one of the reasons we were gifted this book years before.

כלך יפה רעיתי ומום אין בך Which translates into "My beloved, you are entirely beautiful, and there is no blemish in you."

 While this monument is a horrible consolation for your absence, we are confident that anyone walking these rows who stops to read about you will have a small glimpse into the special little girl you were and always will be.  They won’t know about your sassy and at times ornery behavior, but they will know that your 4 years 11 months and 23 days were spent fulfilling such an incredible purpose that it didn’t require the average life time to accomplish.  They might not understand that you completed your mission without ever saying a word or without ever taking your first steps, but they will know you were absolutely perfect and maybe one day I will be okay with the understanding that you were as special as you were that we had to give you back, but until then and probably even after, you’ll find me here, arranging your rocks and eventually sitting on your bench singing “hooray for Sonzee”.

 

47 weeks

Dear Sonzee, 

Today marks the 47th week since I last saw your face and it is also the last week of 2020.  There is a part of me (much like the rest of the world, but for different reasons) that is ready to close the door and open an entirely different window in 2021, but there is still very much a part of me that wants to find a dark corner of a hidden basement and just stay.  This past week has been one of the more challenging ones since we said goodbye to you, but I am sure for you it was one of your best since Corrinne is now with you.  

During your time on hospice, we were told it was time to make arrangements for the cemetery.  You know that I couldn't leave you nor was I at all able to walk into an office and choose the space you would be spending eternity in.  I gave Auntie A and Aba one rule, which was to find a space next to a child who was under 8.  I am not sure others can understand that need, but I couldn't have you alone.  It was scary enough for me to send you off knowing I couldn't hear all about your days or who you were spending your time with.  It was meant to be when there was a place with a little girl, Charlotte Avery, who was actually born around the exact time as one of your bigger sister's, but who sadly passed away as an infant.  I felt at the most peace I could be knowing she would surely be there to help you adjust.  But when I looked at your potential Gan Edan class roster, there wasn't anyone you really knew.  (I wonder if you were scared about that, or if it didn't matter).  For me, it has been really scary.  While I never wanted any of your friends from your class to join you, in the last 6 months you now have two from Miss Amber's room 4 at FBC and I would be lying if I didn't say or admit that each one brings me a bit more comfort in knowing you aren't alone.  

Miss Brittany and I thank you for the magic you pulled off yesterday with your guidance.  I am sure you were there to greet Corrinne and I hope today you both are catching up on lost time and causing the ruckus that we know you are.  We joked yesterday that you and her were going to be the ones to cause trouble and poor Mayzie was going to go along with it but probably tell you both the ideas weren't the best.  Sometimes I find myself wondering how these words and thoughts are even my normal because it makes less than zero sense that I am conjuring up dreams of what you, a 5, and 6-year-old are doing in heaven.

On the topic of your friends, we decided this year to bring gifts to some of your closest friends for Christmas/Chanukah.  Each of your siblings chose which friend they wanted to "adopt" and then we brought it to them.  We had to do a last-minute adjustment to Corrinne's gift, but having the knowledge of life on hospice and living life after, I am glad I made the choice that I did.  Aba and I also embraced a similar concept and so we bought your siblings the one gift they haven't stopped talking about over the year for their Chanukah present, but they had no idea we were even giving them anything.  It was amazing, and they know you are the inspiration behind them receiving it, so it will be the newest tradition in your honor.

We got some amazing new bedding for Bear Pines.  Can you believe they had bear and pine tree quilts in black, red, and grey?! I couldn't believe it myself.  I had wanted to stay strictly with white, but couldn't pass them up.  Plus the place smells like bleach and cleaning sprays after each cleaning so I don't have any concerns that our guests think it might not be clean.  We are waiting on the new washer/dryer set and then we will finally have the house complete-ish (shh, aba thinks we are finished with upgrades after those are installed).  I have plans to (eventually) do some new interior paint, but it can wait.

Anyway, my love, I hope you are having a blast with all of your friends.  We love and miss you!

Until next time.

Love always, 

Ema

Breathe

I should be finishing up my ridiculously overdue work, but my mind just can't focus.  My heart is winning this tug of war with my brain and there is really no point in trying to convince either otherwise.  There is just so much pain weighing on my chest.  It is a combination of heartbroken for myself and heartbroken for one of my closest friends who is inevitably going to understand this post in a completely different manner within the short weeks to come.  There is nothing uplifting, positive, or really even hopeful to share with someone about to face something so absolutely tragic, but as she mentioned to me that she felt like she wouldn't ever breathe again, but finished her sentence with  "but, clearly you are proof that you do".  Since the superhuman in me seems to have gone on vacation, I admitted that sometimes it is really as impossibly hard as one can imagine.

The truth is if you haven't or don't have a child who has a terminal diagnosis you really can't imagine, because your brain is extremely fascinating in that manner, and it just doesn't allow you to even try and comprehend something so outlandish.  If you do, well you almost can imagine it, but that thought makes you physically sick, so you lie to yourself and say you can't imagine, mainly because it is too painful to consider, but also because even though you have a decent idea after living through what you already have, there is a part of you that truly just cannot fathom what imagining really means.  Again, it is one of the brain's greatest gifts, relish in it, because one day you won't have to imagine.

There is no amount of preparation that can help you come to terms with the reality that your child is dying.  There is no amount of comfort care that makes it at all feel comfortable.  There are no easy decisions.  There are doubts, there are fears, there is internal bias, there is judgment, and there is sheer and utter panic. After living one hell of a roller coaster your only exit is to go and ride something similar to the Tower of Terror.  There is nothing that comforts the reality of it and the concept of hope, if there is even a shred of life left in that word, changes drastically.  It becomes hope for being able to survive, hope for being able to get up each day, hope to be able to fake it through the days, and hope to simply be able to breathe.

46 weeks

Dear Sonzee, 

These last 7 days have felt like some weird extended eternity.  They started out amazing as we finished up with our trip at Harper's, but finished off with the hole in my heart growing.  I managed to convince aba to drive straight back to Phoenix, which took us 17 hours, but in my mind was completely worth it.  I didn't end up sleeping like everyone else when we got home, so I cleaned the house and attempted to do the sheets I had waiting for Bear Pines since we have so many upcoming guests.  Naturally, the washing machine died so I packed up everything and headed to Flagstaff.  Aba made me promise to stay and sleep before driving home since at this point I had not slept in close to two days.  I reluctantly obliged while driving there, but then the washing machine in Flagstaff also broke, so staying overnight happened by default anyway.  We have a new machine coming to Phoenix tomorrow, and Flagstaff will be getting a new washer/dryer combo shortly.

I saw your monument before driving to Flagstaff.  It is as amazing in person as it was when I designed it on paper, but to see it in the flesh is still something I am having a challenge doing.  I spent the entire time crying while rearranging all of your rocks.  I had planned how the rocks would be placed for months, but to see it in person is a lot.  We are waiting for your bench and the yahrtzeit candle, hopefully, they will both be in soon.  

I found out that your bestie will be joining you shortly wherever it is you hang these days and one of ema's close friend's mom passed away this weekend.  I found myself standing under the pavilion at Mt. Sanai today doing my damndest to not have flashbacks of the few parts I remember.  Luckily for me, I was in charge of the zoom guests, so I was preoccupied holding my phone the entire time.  You know how I hate to cry in public, so I would roll my eyes up and then would catch sight of the same fan I stared at for however long it was I did on February 4.  I am thankful I still have minimal recollection of the details of that day.

My heart is this indescribable broken that truly cannot be comprehended unless someone's child has died, and yet, it still manages to break even more.  I cannot tell you how happy I am that you are no longer locked in your body and suffering and that soon the friends of yours that are still facing similar challenges eventually won't be either, but it is a horrible consolation for us parents.  I hate watching what was once our parent to parent Friday morning group social time with you and your friends and their moms/dads transition into this alternative club sans you and your friends.  It was one thing to fear becoming the next but I have learned it is far worse knowing friends of mine will be the next.  My heart nor my brain is capable of processing any more of your friends joining you.  It just isn't right and I wish it would stop!

On a positive ending, your brother had two hockey games yesterday.  One was an actual league game and he scored his second goal of the season!  It was amazing to be there to see it in person and he was so proud of himself as were we!  I had just jokingly texted Mrs. Zupnick saying that I was dressed in my gold sequin boots and completely decked out in all things Jr. Sun Devils so he owed me a goal.  Who knew a request could be so simple?!  

Anyway, my love, I cannot believe in 10 days it will be the last day of 2020 and the last day of the last year you spent any time here on earth.  On the same note, it will be just 3 weeks from your Hebrew anniversary date, which we are even more connected with because it is also my Hebrew birthday, and it will also be a day shy of 5 weeks from your English anniversary date.  

I miss you beyond words and hope you are doing well!  I love you lots!

Until next time, 

Love always, 

Ema 

45 weeks

Dear Sonzee, 

We are just 7 weeks from it being 52 Mondays' since I last held you in my arms.  Today at 1:08pm will be 45 weeks from the day your soul left your physical body.  This week we are back at Harper, Lily, and Seth's house.  Your siblings are having a great time, and aba and I are thoroughly enjoying our time with Mrs. Penny and Mr. Dustin.  The whole situation is surreal.  Harper left them before you even turned one before we ever met them in person and before we ever came to Dallas for the first time.  We have essentially only known Harper's family without Harper, but yet it is so surreal to be in a house that has suffered the same loss.  We once entered knowing we would be them one day, and now we enter with an understanding of the pain that (thankfully) the majority of parents don't need to know.  I felt some relief in seeing the family pictures on display are the ones that include Harper, I know they have taken pictures since, but I also know the challenge of being able to look at those.

Your brother's hockey team did awesomely.  They made it to the semi-finals, and then ironically played one of their challenging opponents from Arizona and lost.  It was disappointing, but yet comical that we came to Dallas to play an Arizona team.  That team went on to win the entire tournament, so I would say their win was justified.  Tzvi's game is improving and allowing him to hang out with his teammates goofing around, and not have any fear over corona has been a huge relief.  It was really great for him, and I loved being back in the rink cheering him on.  This year it is gold sequin boots, and everyone commented on them!  Your sisters watched from the live stream, so they didn't get to wear theirs, but they are ready for when we get back to Phoenix.  You would have loved yours, and the maroon beanie with the pompom on top.

Bear Pines sort of took on a life of its own this month and I am really excited about all of the upcoming stays.  I think I even got aba to agree to a new larger washing machine.  Miss Penny's is amazing and HUGE and I really need (want) that bad boy hooked up in the laundry room.  We will see how that goes, but I am seeing the clouds part and the angels singing as it is being installed in my mind.  There were a couple little bits of snowfall last week, but nothing heavy on the forecast for at least the next 10 days.  I keep watching for snowflakes on the weather app.  I need to get some things done before the snow really settles in for winter, but the worst case would be doing it during the snowfall.

Aba and I took a deep breath before we went out of town last week to the cemetery to see if your monument was installed.  In a collective sigh, it was not, and then I received the email it was the next day.  The debate now is, do I really want to see it before the unveiling.  I am really torn.  It is really a challenging decision.  I have a few rocks I need to paint for the next time I go and visit you.  I also have to make sure I order the little animal figurine to mark the year.  Time really is sneaky that is for sure.

Anyway my love. 

I hope you are doing well.  I hope you know how missed and loved you are.

Love always, 

Ema 

Monument

A week and one day after Sonzee died was the date of her 5th birthday.  Our period of morning finished with a walk around the block and me needing to decorate her gravesite like it was her bedroom door.  It had to be ready for her on the morning of her birthday.  I had not really known what I was going to do, I mean it isn't something I ever really planned in my mind.  I didn't even know what I would give her, and then our friends took my need for thought away and sent us rocks and paint pens.  We each painted a rock for her 5th birthday, and it was those paint pens sitting in my car that became the inspiration for all the painted rocks that have been placed since.  

On her birthday we told the school the kids would be late, and we drove to the cemetery to eat cupcakes and place her birthday rocks.  I had never walked into the office, Sam and my sister took care of all the arrangements before her death.  I remembered my sister telling me the office staff wouldn't call to discuss the monument until a month had gone by at the earliest.  Sam was not in the right mind to discuss any details, so I walked inside the office myself.  I remember the awkward feelings that were in the room, you could seriously feel the heartbreak in everyone there.  I asked about what I could look at to get started on her monument and they all looked dumbfounded.  They reminded me that I had plenty of time, and I said I understood that but.

So I took the pamphlet of some artwork and the advice to walk around the cemetery and take a look at the inscriptions, stones, and colors.  I remember I asked if the monument had to be the standard type.  I was relieved when I finally found out it could be different.  I knew the moment I settled on the shape and type and the color.  Of course, I picked the one that would take the longest, but since it was March when I placed the order it was perfect, it should arrive in time for her anniversary.  Sam and I were not on the same page, but we never really were the entire parenting journey with her, so this wasn't any different.  The main difference was that I was adamant I didn't care anymore about listening to anyone else over her or her needs, I was buying this stone and every single option provided and that was it, cost wasn't an option.

The truth and horrible reality is the simple but yet incredibly challenging fact that this is the last physical gift I will ever give her.  I don't get to buy her birthday presents or random things that remind me of her so she has to have them.  I didn't get to buy her a Kindergarten graduation gift.  She won't be having a Bat-Mitzah, a sweet 16, a middle, high school, or college graduation party.  She won't be getting engaged or married.  From now on there are only going to be celebrations in her honor, so this tiny plot of land has to do justice in honoring her 4 years 11 months, and 23 days of life.  I am confident it really is as perfect as it possibly could be.   I know like we always did, we made the best choices for her.  I am honestly really proud of the way the proof looked, but I am really scared to see the stone in person.

The date, December 31, 2020, for her unveiling was chosen to represent this chapter of her journey being officially closed.  It was chosen in hopes that 2021 will be the first step towards moving forward, but honestly, I am really unsure how I am going to handle the finality of this entire year.  What I am even more fearful of is closing out another aspect of my parenting journey in relation to her.  

44 Weeks

Dear Sonzee, 

Hey, there baby girl.  Hope you are doing well.  This week has been a lot, to say the least.  For the first time essentially since your celebration in March I left the house to go someplace other than to see you or to Bear Pines.  I took your oldest brother to hockey practice and he was so excited.  Reverting back to a life I had almost forgotten but one I quickly picked back up into, the day was insane with some work meetings, getting dinner together, going to see you (where I found out your monument was coming in Friday-more on that later), and your brother being so excited for me to take him.  I decided why not make it into a "date" and we could grab Starbucks on the way, except the Starbucks near our house was closed, and by habit, I knew the "new" on by PCH would be easy to get into with traffic and it would be quick.  I have only used the Thomas Exit one time since the last time I took you to PCH, for some reason the minute I turned right I knew this was a horrible idea, but I stuck with it.  We ordered our drinks and I got your brother those chocolate Madeline cookies he loves.  I was doing "ok", staring PCH straight in the phase as I went to turn left, BUT then in front of the Christmas tree walking away was Santa and Mrs. Claus, and I couldn't hold back the tears any longer.  (For all of you who are acutely aware we are religious Jewish, the explanation occurs now.)

Remember in 2018 when you spent December in the hospital?  Remember how they were so amazing and despite knowing we were Jewish and don't celebrate Christmas, the hospital insisted we get toys for you and your siblings?  Remember that polaroid picture of you with Santa and Mrs. Claus that aba rolled his eyes at me for allowing to happen, but I didn't want to be rude, and hey, why not?!  Ya, so that image immediately popped into my head and it was too much.  You would think I would have been done, but no.  I managed to suck it all back inside, after all, the eyes are the only part of my face visible these days, and I did not have my red removing eye drops with me (lesson learned).  We got to the rink with the perfect time to spare so we could have our little date, except, the last time I was at that rink was for a game you were present at.  I changed your diaper on the floor of the car in the space directly in front of where I happened to park the car.  That pretty much did me in for this outing.  I texted a close friend and wondered how on earth I was going to suck it up enough to walk inside and meet people who I have never said hi to.  She had already joked with me after Starbucks and Santa to go home, but inside I went.  Luckily (and not to brag) I am a master of breathing in the tears and sadness and slapping on the fake smile (thanks for assisting in my mastery of this skill.), and I survived my first outing since Corona started and since I last celebrated you.

Going back to your monument.  Earlier in the day Thursday at the cemetery I was initially told your stone would be arriving within the month.  While I was there a proof came in for saba's plaque and then I was told it would actually be arriving Friday.  That was a lot for me to process (and will have it's own dedicated post).  I don't know if I have it in me to see it before we do the unveiling or if I should go so I don't completely fall apart at the unveiling?  I am unsure one will prevent the other?  This is really challenging.  We are going away this week for Tzvi's hockey, so I might use it as my excuse as to why not to go see it.  The irony that going to arrange your rocks and wondering when the monument would come has been replaced with me wanting to avoid the cemetery like the plague because I know it is there.  Oh, and about your rocks.  I am SO sorry that others have caught onto the paintings and are doing similar.  I remind myself imitation is a form of flattery, but honestly, I half-jokingly told the staff not to encourage others when they say how they are "totally going to do that" when they walk by and see them.  There are two other plots now who have embraced coloring every rock that gets place...it makes me want to scream, no matter how irrational it might be. Sigh.

Laeya and I went to Bear Pines to switch out decor and get things together for our next guests this week.  I placed a new winter snowman that also has a ruler to measure snowfall by the trees on the front left side of the house.  Laeya was thinking of names and decided it was a girl and her name would be Snowzee and it is absolutely perfect.  The last thing that I need to do is set up the ice rink, but the 10-day forecast shows absolutely no snow, so I am not entirely in a rush.  My plan would be before our next guests, but the last time I had a plan, Hashem (as usual) laughed and changed them, so. 

This week was the first time I had a dream about you since you died, and there were two.  I didn't like either of them to be perfectly honest, and it took Auntie A interpreting them for me to not panic that they were of you now.  Thankfully Auntie is like the dream whisperer because I was losing my mind.  What I will say is that in both of them there was either equipment of yours that represented you being there, or you were in a hospital bed with tubes and IVs and seizing.  Since I saw your face both Auntie A and Aba said there is no way that it is me having a view into your current world.  Every time someone has told me of a time they have seen you since you died they never see your face and you are happy and you are walking and you aren't sick or seizing.  I am so scared to think that my dreams are your current reality, but Auntie did a good job of making me consider that everything that happened has a deeper meaning.  Then aba told me that he also had a dream with you seizing and in a hospital setting with people taking care of you, but that it was definitely a dream based off of mine because when he saw you the other time, he felt it to his core and this was just the recesses of his mind.  

I guess I have no choice but to have faith that Gan Edan is filled with you running around with your friends, being a typical little girl, and being free.  The alternative of you being in some strange distant place requiring full care without me there to be doing that makes me physically ill, so I am going to attribute everything to the way this week panned out and hope I get to see the current you at some point soon.

I miss you SO much.  I love you. Be safe!

Until next time

Love always, 

Ema 

  

10 Months

Dear Sonzee, 

Today is my last monthly letter to you in the year 2020.  Today I will place the last monthly rock of 2020.  Today will be the last month of 2020 that you haven't been here and in just another month it will be the first year that you won't ever be physically part of.  I wish it didn't take sitting down to paint your rock for this all to become so obvious.  These next few months are going to feel insurmountable.  I am acutely aware of what accepting my grief is going to mean.  I am painfully aware of all of these lasts and firsts that are going to be exhausting and beyond difficult to process.  I am also not naive enough to think I can actually prepare for what is to come, nor that I am even fully aware of just how horrible it is going to be.  I know that our entire journey with you was filled with much of the same uncertainty and emotions, and I managed to sort my way through that forest, so I will just continue attempting the same.

This last month your baby brother turned 3.  He misses you, we are all aware of that. He loves the book of you both.  He loves to watch videos of you and he loves to look at your pictures.  Last night I opened the door to your room to find the glow rock paint box and almost hurt myself stepping onto his magnetic tiles and the Playmobil toys.  I hadn't realized he was playing in there while I was working today.  We cut his hair and he lost your shared curls.  He looks super cute, it's so much easier to not have to brush it, but I do miss seeing your curls on his head.  I feel like he looks completely different now.

This month I learned more about your oldest sister's grief and I am working on ways to best help her.  To start we are going to take her to see a friend who "gets it".  I think that is going to be some of the best medicine for her.  I won't lie, seeing her mother will be such a huge bonus for me as well.  I am really feeling lost and it would be nice to be lost amongst the company of those who have been there and are in a lot of the same ways still swimming in it, but who have close to your entire lifetime of managing it to date.  

Someone asked me this week if I was set up for Chanukah, and it was at that moment that I realized I haven't done a thing for it.  I intended to take out the decorations, but now that we will be away, I am a bit relieved it can go in the avoid pile.  I know, I am already failing miserably at not running from facing life without you, but, maybe accepting my grief is also accepting I am just not ready to do any holidays without you?  Aba asked me after your brother's haircutting on Thanksgiving if every event would feel like it did without you from now on, and then he mentioned how much it sucked, I nodded in agreement.  Luckily for us, we have some amazing friends who sent us a huge basket of literally all things Chanukah, and it has been on the counter for a week, so I think that can technically count as decorating?!  

This month I started working a bit more, picking up a couple of extra classrooms and kiddos.  It has been really awesome overall, but by the end of each day, I am beyond exhausted and done.  It is in a way really awesome to still see some of your friends and the kiddos who would have potentially been in your class.  It is also nice to be in that life even in a virtual setting, even though it doesn't involve me doing much.  It feels so familiar and it brings a smile to my face when I provide an opportunity that I know will help another family communicate better with their kiddo.  It is usually because of your inspiration.  You have no idea how much you did for my education.  To think there was a point in my career where I was frozen in fear meeting a non-verbal child with your quality of complexities and I had zero ideas of what I was doing, it makes me feel even more fortunate for my time with you.  (Although, I do wish it could have been longer, luckily for me in the land of being an SLP my caseload will forever be primarily the ages of your life)

Not much to report on Meena or Tzvi.  They both keep asking me for their picture books with you and them respectively.  I really need to add that to my list of "needs to get done asap".  If only I could have a couple more hours in the day I could get so much more done.  It really does make me wonder how I was so talented when you were here.  Or maybe I was just doing that much less outside of your care?  I am unsure, the jury will remain out.

Anyway my love.  I miss you more than words can express.  I hope you are enjoying your first winter in Gan Eden and that things are well.  

Until next time.

Love always, 

Ema

 

43 Weeks

Dear Sonzee, 

Another week, and soon another month will have flown by.  Tomorrow begins the first day of the last month of 2020.  I really don't have the words to adequately convey my emotions over this entire span of time that has and continues to go by without you. I sometimes find myself stopping short and daydreaming over what life would look like with you here.  I have conversations in my mind, with myself, based off of essential nothingness, and fictitious arguments with others who are still living the life of medically complex.  I sometimes find myself feeling a bit less than because my stint as a special needs mom was only 4 years 11 months and 23 days.  I promise it felt longer.  Sometimes I find myself wondering though if those who are still living that life, the ones who started before me and who will continue after me if that makes them understand more? If that makes them more of a special needs mom than me? I suppose it doesn't matter, but it still makes me confused as to where I fit.  I won't ever not be a special needs mom, I won't ever be just a regular mom, and honestly, it really sucks to be part of the bereaved mom group.

Recently I feel like so many people I know are joining this special needs mommy life.  It hurts my soul in a way I just cannot explain.  There is just this crushing feeling that encompasses my body, and then I have to remind myself their journies aren't mine to live.  Their experiences won't be ours, their stories aren't yours, and although I want to with all my being, I cannot fix their situation any more than I could yours.  It is so hard to sit back though and know the potential pain they might endure.  It just isn't fair.  No one should know anything over the journey you or we experienced, and no one should have to live and understand any part of life after.  I wish I could escape the negative parts of life.  I miss the days of ignorance and I miss the days where people I knew lived in their everything is all magical unicorns, rainbows, and blissful lives.  When did the world become so tainted?  Or is it just ours because we entered into the land of rare?  Rare isn't feeling so rare lately.

I made an ornament in your honor.  Considering I have never made an ornament minus assisting in Mr. Gabe's classroom last year, I think I did a pretty good job.  It is going to hang on a tree at Phoenix Children's Hospital.  I used a fairy mermaid set to fill out some blue rock water and put in a mermaid in the "water", with your name across the back of the ornament.  I am pretty pleased with how it turned out.  I know it isn't exactly what aba would want, but honestly, any opportunity to make something in your honor and have it for others to see is just something I am needing to do.  Maybe it is because it makes you real?  Maybe it is because it means you existed?  Don't ask me to analyze the psyche behind it all, all I can say is I now own 19 additional plastic ornament bulbs for the next 19 years of tree decorating in your honor.

Your baby brother turned 3 over the weekend.  He had his first haircut.  He had your curls, while it is significantly better for him to see and it doesn't look like a hot mess, I miss those curls.  You hold the record for not getting your hair cut the longest.  While I am happy I have your curls in a shadow box in your room, I wouldn't have ever cut your hair if you weren't going to leave us.  You had the best twirls.  Nurse Paige always did a fantastic job making them extra boingy, and you looked so cute.

Well, my love, I will end this note here.  I will be back on Thursday to honor your 10 months.

Until next time.

Love always, 

Ema

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

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

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

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 

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"

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

  

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

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 23 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.  

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 

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.

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
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