Monday, November 29, 2021

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


The Mighty Contributor

Monday, November 22, 2021

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

The Mighty Contributor

Wednesday, November 17, 2021

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



The Mighty Contributor

Tuesday, November 9, 2021

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 

The Mighty Contributor

Wednesday, November 3, 2021

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



The Mighty Contributor