Thursday, December 31, 2020

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 22 days of one hell of a roller coaster of a life.


The Mighty Contributor

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 22 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 22 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”.

 

The Mighty Contributor

Monday, December 28, 2020

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

The Mighty Contributor

Wednesday, December 23, 2020

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 meansAgain, 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.



The Mighty Contributor

Monday, December 21, 2020

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 



The Mighty Contributor

Monday, December 14, 2020

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 

The Mighty Contributor

Wednesday, December 9, 2020

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 22 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.  

The Mighty Contributor

Monday, December 7, 2020

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 
  

The Mighty Contributor

Thursday, December 3, 2020

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
 

The Mighty Contributor