95 weeks

Dear Sonzee, 

Today marks 95 weeks.  That is a lot of weeks.  I am definitely feeling the distance between us and the life we lived with you here.  I will admit I feel like I am allowing myself to feel your spiritual presence more, but sometimes I wonder how much of that might be made up.  I guess I won't ever know, so maybe even if it is simply pretending, that is okay.

This last week was brutal.  I failed to acknowledge just how awful each holiday season will be without you.  I anticipate the challenge, but then actually living it in some ways is worse.  The only way I know to describe it is having one of those days where you are just angry over everything and nothing but you can't figure out why or what's causing your feelings.  In my case, I know deep down it is grief...I just wish I could keep it locked away deep down for the sake of myself and everyone around me.

I feel like I was not actually present anywhere I went the last week, including work.  My body was physically there, but mentally it has been on a distant planet.  I am having such a challenge focusing and wanting to do much of anything, it has just been really hard.

Thanksgiving did not help at all.  It was a fine day, I actually brought you a bunch of rocks, but not having you around really stinks. I was already off-kilter because of Thanksgiving and then Tzvi had his hockey tournament with 6am puck drops.  For 95 weeks I have essentially waited for someone to push me so far over the ledge I blurt out that you died and they should really get a grasp on what matters in life, and it happened.  I don't know what I expected to feel when it eventually happened in a heated manner, but I can tell you that crying in a parking lot in Gilbert into the arms of another hockey mom is not what I envisioned, but that's exactly how it played out.

I found myself unable to shake the sadness and anger and wound up sitting back on your bench after going home for a second and then leaving in my slippers.  I guess it was needed.  Your sister happened to have left her phone on the back ledge of your stone the day before, so I am guessing you knew what was going to happen and that I would be returning.

By Shabbas I felt better, but not overly thrilled knowing that it would be your brother's 4th birthday on Sunday.  Seriously, who planned all these things into one weekend?  I had little desire to do anything and the birthday box is still in the garage at "Phoenix house".  I decorated his door, put together his nerf scooter, and called it a day.  I felt guilty.  I felt like I needed to smack myself and pull myself together because it isn't fair to him, so I eventually did.  I texted a friend from grief group and being that she's been in this position before, she told me that his actual birthday wouldn't be as awful as the day before.  I trusted her and when I woke up on Sunday, she was 100% correct.

It is still a challenge for me to comprehend that he is now 4.  It makes me question where time has gone despite knowing that 95 weeks have passed.  Despite knowing that you would be turning 7 in 2 months. Despite how obvious it is that life is moving forward without you here.  I am trying my best to follow the path that I know you are laying out for all of us, but know that there is a huge part of me that wants to embrace my inner toddler and just throw myself on the floor in a full-blown tantrum because I just don't want to move forward.

We went to "Phoenix house" and packed up the playroom, the final room to be emptied so we can have it repainted.  Your bedroom doors are freshly painted and no longer contain the very last medicines or times we gave them to you on them.  They no longer list your last appointments or the last time we had your tubes changed.  They are just white, with no evidence of the purpose they once served.  I am a mixture of numbness and wanting to cry.  I suppose that describes me on a typical day in general.

Anyway baby girl. I hope you had a great Thanksgiving in Gan Eden.  I hope you are being smart and safe and doing everything you want to do!  I hope you know how missed and loved you are!

Until next time.

Love always, 

Ema

94 weeks 10 hours and 23 minutes

Dear Sonzee, 

I met another Monday without you here.  Somehow it came, and then it went, like the 93 others before.  Just like last week and the one before, I still wonder how time continues to pass me by.  I wonder how we have almost completed our second set of holidays without you here.  I wonder how next week I will be making another monthly rock.  I wonder how any of this has happened.

This week someone joined two of the CDKL5 support groups I am still an admin of.  One of them is the one that Miss Penny started, Life after CDKL5.  The person stated they were an aunt of a newly diagnosed child.  They also joined the Extended family CDKL5 group that I began to keep the peace in the parent group.  I sent her a message after I deleted her request and explained the group was only for those who have buried a child who had been diagnosed with CDKL5.  She casually replied she was not aware children diagnosed with CDKL5 could die and she just wanted to support her niece. (Must be nice to live in that bubble, although I popped it rather quickly when I mentioned that unfortunately yes they do and you died almost 2 years ago).  There are definitely parts of your old ema that left with you.  Like the part that feels the need to coddle anyone in the world of CDKL5 or the part that gives a care about taking any sense of naivety away from someone in an unrealistic lala land of CDKL5 rainbows and butterflies. Hashem help me to those who mention the word hope and cure in relation to CDKL5.  I can't tell you how many people I have snoozed or simply removed off of my friends' list lately.  

Sorry, I have completely digressed. 

This week we had a birthday party for Noam.  He will be four in just 6 days.  I don't know how I am going to deal with that.  I mean I do, because I have to, just like every other day since your death.  But you are still 4, you will always be 4, forever, but your brother will now also be 4, and (G-d willing) he will one day be 5...but you won't.  Mrs. Zupnick did most of the planning and pretty much everything (except I did make Auntie A do the invitation). It was a joint party with Nosson.  It was so cute because he has spent the last 6 months asking about his birthday and he isn't really processing it is about to finally be here.  He will spend the actual day at your brother's hockey tournament (maybe you could help him with a championship win this weekend?!) and then it will be the first night of Chanukah.

This week there were sadly a whole bunch of new parents in grief group.  It is always bitter-sweet to have new parents come.  Horrible for the circumstances, nice to have others who get life now.  We went yesterday to the park and made disposable boats and sent them off in your honor with flower petals inside.  We were given a new blanket, it is red, black, and white, and perfect for your honor.  We made a circle and then they read your name off a card, a woman next to me wore a "White Cane Walk 2021" shirt from FBC and reached out to my arm when your name was read, I wish I could place who she was and who her child was.

Your sisters received their scans for their expanders that will be placed next week.  They keep complaining about the lack of candy they will be able to have.  As with many other topics, I tell them to file it under personal problem. Instead, the Moonzie bear continues to "forget" that she can't eat the candy and she has lost two spacers already and had to have them replaced.  She is driving me completely crazy with that! It is going to be a lengthy 10 months with her for sure. 

Anyway my love. I miss you so much!  I hope you are safe and well.  I hope you will come and visit me soon!

Until next time.

Love always, 

Ema

93 weeks and 1.75 days

Dear Sonzee, 

I am sorry I missed writing to you on Monday.  It just seems like time is completely impossible to hold onto.  This last week was another that flew by.  On Thursday your siblings as well as myself had off of work/school and all day I thought it was Sunday and didn't understand how I was going to be writing another weekly letter.  Then I realized it felt so quick because it had not actually been an entire week since my last letter to you. 

This last week I have just felt completely blah and not really wanting to do much of anything, including going to work.  Since it isn't an option to just stay home, I force myself to show up, but while I am there physically, mentally I have no idea where exactly I am.  I suppose this is one of those times it is good that I am working and that I have a reason to leave the house because if not I am pretty sure wallowing in self-pity and sleeping all day would be my only agenda items. Some mornings though I think to myself this is exactly what I was afraid of happening if/when I went back to work, so maybe it wasn't a good idea?  Maybe I should quit so I can just be blah on my own without it negatively impacting anyone or the environment?  Grief sucks!  I hope you aren't experiencing any of the same feelings.  I hope you are only happy as I can only imagine you to be.

Your brother has been playing some great hockey these days, scoring and getting assists.  Some games are better than others, and we are very proud of him!  He is still loving the game, and he has a great team, so despite late nights, early mornings, and lengthy drives he couldn't be happier.  He has another tournament coming up over Thanksgiving weekend, if you aren't busy, come on by!

We celebrate Noam turning 4 in a couple of weeks.  This one is going to be tough.  I am still not ready to accept he will be the same age as you.  I cannot process that you should be 6, that you would be turning 7 in less than 3 months.  In a year and a couple of weeks he will be older than you, that will be incredible for him, but horrific for me.  I am trying to do my best to celebrate all of your siblings' birthdays, but full disclosure, it isn't easy.

On that topic, for the first time since you have been gone, I actually decorated for a holiday.  I took out our Chanukah decorations and set them up around the apartment.  I have the handprint menorah Miss Amber had you make.  I have your "A Hannukah Bear for Sonya" story and bear on display with your siblings' books and bears.  I still have the cards Nurse Teri gave to everyone.  I am trying to make myself want to be back to my old holiday/birthday fun self.  I am trying to follow my old adage of "fake it til you make it", the jury as always is still out, but I am giving it whatever best I have.

Before I end my letter, I want you to know that I am really sorry that I haven't gone to your grave.  It is up there with my lack of desire to do anything.  The guilt mixes with the fact that I know I don't need to be there to be with you, I just want/need to get you all of your rocks!  

Anyway my love.  I love you! Be safe! Come visit!

Until next time.

Love always, 

Ema

92 weeks and 1 day

Dear Sonzee, 

Hard to believe we have completed 2 weeks into the 90 week category and there are just 8 left until we will be in triple digits.  I would ask how that has happened, but the short and simple answer is, life. The 4 letter word that represents so much and yet doesn't physically involve you anymore.  A concept still beyond difficult for me to grasp.

This last week brought us to your brother's hockey tournament in Chicago.  Something that once would have taken a lot of diligent planning and mixed emotions on your involvement but that ended up happening without much consideration.  It was as simple as booking flights, booking the hotel, and me just taking off of work.  The most challenging part was figuring out food, but even that turned out to be simple and hardly took much effort.  

I mentioned you more often than I have ever to this group of people.  It still feels awkward to bring you up sometimes, and sometimes I mention your name as if they would know who you are and then I wonder if I should say more or just keep on going with the current conversation and let it go unless questions are asked.  I wonder if the second guessing, overanalyzing, and sheer awkwardness of your life and death will ever become easier, or at least less complicated in my mind?

Your brother played really well this weekend, although there was no championship win for his team.  They won one game and lost three, but played some amazingly talented teams.  We set the bar high for your brother with our motivation for him, but in true Tzvi fashion, he pretty much came out accomplishing it all.  We wanted him to play more aggressive and said to get one penalty over his four games, he managed to get two.  We told him to aim for scoring one goal, he managed to score three (although one unfairly didn't count because the ref decided to blow the whistle as he shot it in).  We told him to aim for two assisted goals, he came up slightly short on that and only had one, but he did score an extra goal himself that could have been assisted had he passed it, so that is sort of a toss up.  Overall, he had fun, and he played really well, we are really proud of him.  I wish he could have snagged a hat trick, but there will be more games to come.

I need to get to making all the rocks I owe you.  I am sorry I am so behind!

Anyway little girl.  I miss you.  I love you.  

Until next time.

Love always,

Ema 

1 year 9 months

Dear Sonzee,

 Today completes another month that has gone by.  An entire 21 months, just 3 shy of completing another year.  This month was another relatively tough one.  It still has not gotten any easier, in fact, some days and things are just so much more challenging. 

This month I found myself able to speak out on matters that I once would never have held back on, but have since you have been gone.  It was the first time I was able to speak out against illegal handicap parking.  Something so simple, but something that I have shied away from as a protective mechanism.  I didn’t speak to the people directly, but I did ask the owners of the area to address it and they sent out an email.  To be honest, it did little to stop all the entitled people who feel dropping their child off at gymnastics warrants the use of a space designed to be used by those needing to be closer to an entrance.  However, have no fear, my next stop is calling the local police department and asking if they have the resources to come and sit in the parking lot during pick-up and drop-off times.  I am just really trying to do my best to not start altercations, which I know is where this is headed.

This month I hardly was able to look at your pictures, and I haven’t been to your grave in an entire month.  I managed to be able to sit there the last time for over 2 hours, so at least once I got there it wasn’t as horrible.  They fixed your bench, it looks amazing.  I also have to apologize because I didn’t make it there today either.  I didn’t paint your rock yet either, but I will.  I know whether I avoid these things or not doesn’t change the reality that you are still gone, but attempting to pretend is something I have gotten fairly good at.

This month the anger came back full force.  Maybe it never really left, but I just find myself really frustrated over you not being here, over you having had to suffer, over it feeling like so many people have moved on from you being here, over organizations dropping us when at one point they used us for whatever benefit they could gain from having us promote them, over life moving on and forward, over life being normal, just angry over it all. It’s just all so hard.

This month was just another on this never-ending grief journey, but also another month that you were free, not suffering, and able to be comfortable.  Our roles have switched, and I wouldn’t have it any other way, except if I could have had you here with me without that horrible CDKL5 mutation, but I suppose that’s a discussion for an entirely different life.

 Anyway baby girl.  Have fun. Be safe.  Come and visit.  You are loved and missed beyond measure.

Until next time.

Love always!

 Ema

91 weeks

Dear Sonzee, 

This has been one of those long weeks.  It isn't long in terms of how quickly it went by, but in grief it was lengthy.  It feels like it has been an eternity since last week's letter to you.  This week I found out that your tile was created and placed at Ryan House.  To be honest, I have not even posted about it or shared the picture of the tile that Corrinne's mommy so kindly sent to me.  I can't bring myself to go and see it myself.  It is right up there with avoiding your grave. I am so sorry.  I hope I can eventually bring myself to go.  Ironically when we toured Ryan House in 2016 I remember thinking how amazing that memorial garden was, and I knew one day you would have a tile placed on the wall and I pictured myself sitting out there.  Fast forward to reality and I haven't been able to attend the virtual breakfasts they have had since your death or drive near the building.  A place that just two years ago last week you had what was unknown to all of us, your final stay there.  A place that once brought our entire family peace and comfort, and now, I cant stomach its existence.

This week we began apartment living.  I am just going to put it out there, I am not an apartment living sort of gal.  It certainly has perks and privileges (like the cold brew on tap), but otherwise, I am thankful we know we have an end in sight and it won't be permanent.  Our first Shabbat there was really amazing, to be honest, there are so many religious families.  We ended up sitting downstairs outdoors and bringing our food down for a potluck.  In the process I realized we have no one under our unit despite being on the third floor, and that we are directly over the 3 floor high ceilings of the lobby.  Winning!  The plus is now I can stop yelling at your siblings for jumping around, the negative is they now know no one is under them so they remind me when I tell them to stop jumping around. I probably should have kept that knowledge to myself, but you know how I get when I am super excited.

Tzvi had his first tournament this weekend.  I will say overall the team improved from game one to game four, it was just heartbreaking they didn't snag a win.  They played well, but they played against some amazing teams.  This week we head to Chicago for another tournament and we are all really excited, except I am fighting with the emotional component of how easy planning and executing it all has been without you here.

Anyway baby girl.  I hope you have a great week.  Stay safe and healthy!  Come and visit, please!  I miss you greatly!

Until next time.

Love always, 

Ema

90 weeks

Dear Sonzee,

This last week has been one of the more challenging ones over the last 90.  I would just like to take a moment to reflect on that number.  90 weeks.  It sends chills down my spine.  My brain cannot compute how time, really life, continues to move, and so quickly.  

This week was one of those weeks where despite how much my heart aches and how much I miss you, I realize you are with us and orchestrating so much of what continues to happen with us and for us.  I will be honest, knowing you are "with" us in a different manner than physical does little for compensation, but it does help to feel your support, or rather your guidance. 

On Tuesday we found ourselves finally settling for the damages of the flood.  It led to a conversation with aba Wednesday morning before I started to work that left me ugly crying in the office, only for a coworker to walk in to see me.  I am sure that was also planned by you as she was the absolute perfect person for the moment.  She encouraged me to cry and listened as I attempted to talk through the tears about how challenging I am finding the prospect of losing your swim spa.  I know I don't ever want to go back into our "Phoenix" house.  I can't live in a house that has nothing of your room, and I don't want to.  Your swim spa though is more of a challenge for me to accept not being able to take.  After I paused, with tears in her eyes she began to tell me about her son and how he died.  My heart instantly knew you sent her to me.  She went on to tell me you won't ever be able to leave my heart.  You won't ever be able to leave my memories.  In my heart and mind is where you will forever be, and the rest, well it is just stuff.  Hashem knew those words had to come from her.  Lord help the average Joe without having lost a child who would have ever said that to me, but coming from someone further into this journey, I trust her words.  I know she is right.  I know despite how much the tears instantly fill my eyes, and how my heart breaks, she is right.  It is all just stuff.  The pictures, the memories, all of it within my heart and mind...it still is fresh, it is real, it is you part of our life and world forever.  Let me tell you though, I am still going to cry over the loss of the stuff.

Thursday morning we found ourselves signing a lease for an apartment.  Who would have ever thought we would be living the apartment life?! But, here we are...It won't be so long, just for a few months.  You have orchestrated some amazing happenings that are hard to ignore and show us how things really do happen for a reason and for the best.  Sometimes I wonder if you sacrificed yourself for your siblings and for us to be able to leave our old life.  Maybe your death isn't where this all started, but 90 weeks later I know you are making sure we all start this journey by really moving forward.  I will emphasize it is by no means emotionally easy.  There is a mixed semi-panic feeling like I am free-falling as I think about life continuing without your big stuff.  There is a part of me that's so afraid that without your stuff the memories won't be enough.  Then there is a part of me that says it is time for us to start on a new journey with you guiding us, with me allowing you to guide us, with me trusting in the plan that I have no awareness of.  There is a part of me that is excited over all the positives that are coming our way, but there is a fear of me fully trusting only to have my feet pulled out from under me like it always was as we lived life with you.  I am afraid to get too comfortable, to trust a little too much, to put my guard fully down.  

Motzei Shabbas brought me to the realization that our life and new life can coexist.  It allowed me to realize those close to us understand the circumstances of our situation.  I realize everyone understands our need to move forward despite that it means change. 

Yesterday your brother had his 3rd league hockey game.  I don't want to ask where you were, but clearly, you had other plans because I can tell you weren't there.  I will give you the same lecture I give your other siblings and remind you that I don't care what other plans you have, you need to come and support your brother.  That 2-8 loss was brutal Sonzee Bear...the least you could have done was throw a goal your brother's way.  Well, as aba would say, the least you could do was nothing...which you did...so this weekend is a tournament in Scottsdale and I am going to tell you, that for all of his games I expect your attendance.  I know you are enjoying your freedom and all, but no excuses.

Anyway, little girl.

I miss you lots, hope you are doing well, and hope you visit me in my dreams soon.

Thank you for everything you have been bringing our way.

Until next time.

Love always, 

Ema

Different hope

I have had a love/hate relationship with the term hope since February 11, 2015.  There was always an internal tug between protecting myself and relinquishing the fear of actually allowing myself to be crushed by the fallout after hope failed.  After all, living a life where death is waiting on the doorstep is nearly impossible without giving in to some sort of hope. Hope that seizures will be few and far between. Hope that illnesses will come and go quickly and not leave behind any secondary long-term symptoms.  Hope of limited hospitalizations or at least quick ones and enough recovery time between the next one.  Hope that the decisions that are being made are the best ones not only for the moment but for whatever the foreseeable future looks like.  Hope that going to sleep will result in waking up.  Hope that the days are filled with more calmness than turmoil.  Hope for the best-case scenario. And dare I say, at some points even possibly hope for a cure.

There came a time eventually when hope became dismal.  When the real hope of life ever becoming normal, different, or potentially something other than what it was really meant to be was no longer in view.  When I realized that what I hope for can't be anything long-term because days became obviously numbered and all there was, was a new perspective on hope.  Hope has always been an abstract concept, but it now turned into something ungraspable because I won't ever learn if my hope is being achieved.  I can't ever receive confirmation because instead of hoping for my child to be "cured", or for her life to be significantly easier, or for her to be seizure-free, or for her to speak her first word, or for her to do any of the many things that her body was deprived of due to a lack of a functioning CDKL5 gene, I am now simply hoping she is resting in peace.  

There is no more hope for a cure when you start to live life after CDKL5.  There is sadness for all the CDKL5 siblings left behind as they continue to suffer.  There is extreme empathy for those families receiving a new diagnosis, but there is less of a care or emphasis for any sort of cure for something that doesn't matter because it cannot and will not bring my child back.  Maybe that is selfish.  Maybe it is just a moment in my grief journey.  Maybe it is just the cold hard truth.  I am no longer able to hope and dream of any positive potential for Sonzee.  There are no more hopes for walking together and hearing about her day or what her dreams are.  All I am left to do is hope to dream of my dead child, continue hoping she is safe, and hope that after I die I really will be reunited with her.    

89 weeks

Dear Sonzee,

Today will mark 89 complete weeks without you here. This time 89 weeks ago you were being held in my arms…in a few more hours it would be the last time I got to feel your weight, hold you, kiss you, and tell you in person “I love you.” I wonder if you even heard me?

This last week went by so quickly and as I sit here trying to recall everything that happened I always wish I had started to write this during the week so I wouldn’t forget what I wanted to tell you.  

The big highlights of this passed week were really that Tzvi had his first league game.  It was the 2nd time I’ve sat in that rink on the north side for a game since you weren’t with me.  Since you didn’t require us asking for the key to use the wheelchair elevator so you could sit in the stands.  It was the first time that nurse Paige sat and watched a game without keeping an eye on you.  It was amazing for her to be there with us, embracing the tram spirit with her purple and black, getting to see your brothers first official goal of the season, but it wasn’t the same without you.  You weren’t kicking off your boots, she wasn’t swiping your VNS magnet, she wasn’t trying to adjust a soft purple blanket fighting with you to not kick it off.  She just sat next to me and we talked like our only focus was on the hockey game. 

It brings me so much comfort that she’s still in our lives, but I know it’s not just me who misses all those things I just listed.

On a similar note to your absence, after you died I made it my mission to make dinner for Corrinne’s  family every time she was admitted to PCH.  It was just all I could do to sort of remain in the old world and knowing how nice it is to eat a home cooked meal and not pay $182736 for Starbucks coffee became my mission to ensure if I knew, her family got coffee and dinner.  Then, she went to be wherever you are and life without you girls changed us all drastically and even random coffee drops couldn’t occur because there was no way to know who would be home, so dinner making essentially stopped. Until last night, when your CDKL5 sister Charlotte was back in the hospital.  I had tried to make dinner the first time, but it didn’t happen. Yesterday I just told her mom it would be coming, and I made dinner, coffees, and might have even thrown in a couple of beverages that the hospital doesn’t sell.  That hospital life sucks! The least I can do is bring food and coffee knowing what I know about that life and the suckiness it brings. 

My heart misses you terribly and while I would never wish to enter those rooms on the 8th floor ever again, sometimes my heart wishes you were here to have that option. My barista level of coffee making is 100% attributed to you!  

Anyway baby girl!  I love and miss you! I hope you are staying safe and having a blast with all of your friends! Thanks for showing your brother some love yesterday and helping him with his first goal.  Thanks for bringing Nurse Paige and so many others into my life.  

Until next time.

Love always,

Ema

88 weeks

Dear Sonzee, 

Another week has come and gone, marking 88 weeks since you left.  This last week was my fall break and despite being off of work for a week I still feel like I didn't get all I wanted to be accomplished.  I did finally manage to get over to auntie a's new place and organize Mo and Ziva's playroom, bedroom, and kitchen.  I still need to tackle her closet, but you know how Auntie A is, she has to be coaxed into allowing me to do my thing...eventually she always comes around.

Corrinne's mommy and I finally got our nails done.  It has been since summer since we have gone so that was nice we were able to catch up and to do some self-care.  I am trying to be better in general in that department.

Bear Pines has been doing really well. We have been pleasantly surprised at how full we have been.  We initially thought with it being off-season we would hardly have guests, but it is quite the opposite.  Someone wrote on the comment card they were sorry for your death.  It makes me smile that people actually read the wind chime that has your birth and death dates and or the information we put in the binder about you.

Yesterday was the first relaxed Sunday we have had in a while. It was nice to not have anywhere to really be besides Tzvi going to hockey.  Starting next week begins the craziness of games.  I can't wait to go and watch him, but also, nurse Paige is going to come and watch since we will be in her neck of the woods.  I cannot wait to start seeing her on a more consistent basis, or at least whenever she will be able to join us.  I have gotten used to her not coming in the house at 7am and not being there when I get home.  It helps we aren't at our house.

We had grief group Thursday night and the last photographer to take pictures of us as a complete family was taking pictures for hospice of the valley.  I mentioned how he took our pictures and we chatted about it for a bit.  I haven't fully looked at those images, but I have taken a quick peek now and then.  I wish we had dressed up, although at the time I wanted it to be real.  

Anyway baby girl.  

I miss you! Hope you are doing well!

Until next time.

Love always, 

Ema