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