Monday, June 28, 2021

73 weeks

Dear Sonzee, 

At 1:08pm (PST) another week has gone by.  This time it finishes with you being joined by another CDKL5 sister.  Being that I removed myself from the CDKL5 support page a year ago, it was Harper's mommy who sent me a text about the situation when she first heard about what was happening.  The eery similarities that fall within the realm of death of you all make me a good portion of sick.  This time, it didn't follow the way your end of life unfolded, but instead another sister of yours.  I wish someone would do research on the deaths already, but I am just not strong enough for the battle that would take.  Sadly, in time, research will cover that as well; you know after enough of you have left this world.

When she first sent me the text, my response was that I didn't have the strength to reach out.  After a few days, I put on the big girl panties and did what I could.  Her mom told me last night she appreciated what I did this week despite how hard it must have been...one day (soon) she will know exactly how it went down.  That makes me even sicker than I already feel.  I hope you and the rest of your CDKL5 siblings were there to greet her!  I hope you have taken her under your wing.  I imagine even if you all do your own thing on a normal day, on days like today you come together like a huge camp reunion to show each other the ropes.  I know it softens my anger and helps me rest a bit at ease thinking 73 weeks ago the same was done for you.

This week has utterly sucked.  There is zero sugar-coating how it feels to be back in TH49 without you.  I initially breathed a sigh of relief not seeing the blankets we used to lay on the floor for you to roll on.  The ones I wondered if anyone else ever used or if I was the first and last one to wash them each year.  Then I went upstairs to the room you used to share with Meena, the one we don't need to use this year, and there they were...organized neatly on shelves staring me in the face.  I walked out of the room and closed the door.  I keep that door closed all the time.

So many people have mentioned you.  There is a part of me who wishes they wouldn't.  I can see it in their eyes from 10 feet away as they make their approach that you are on their minds.  They have a look on their face that makes me want to run away.  Instead, I embrace them and the words come out of their mouths.  They mention your name.  They do make me smile.  I would most certainly HATE if they didn't mention you, but there is ZERO winning. I can't always stomach a conversation about you but I wouldn't be able to survive without having conversations about you.  The truth is that people don't know what to do or say, and neither do I.  This life after you is really hard, even 73 weeks later.

Laeya and Tzvi appear to be having a great time in camp.  I made the mistake of not sending them with trunks of food nor Tzvi's hockey stick...live and learn.  Oops!  The camp of course took it upon itself to make sure your brother now has snacks available at his whim in his bunk.  Every video and picture of them makes me smile and reassures me that they are having the best summer.  We took Noam on his first official train ride yesterday while visiting Aunt Ronit.  He couldn't get enough so we told him we would do it again and go into the city.  He and Meena started camp today.

Anyway, baby girl, we miss you beyond words!  Stay healthy and safe!

Until next time.

Love always,
Ema


The Mighty Contributor



Tuesday, June 22, 2021

72 weeks

Dear Sonzee, 

We have finished up another week filled with your absence.  Yesterday, which officially marked 72 weeks, we landed in NY and drove up to VV.  I anticipated the experience being all around upsetting, and as I also warned myself, it ended up being worse than predicted.  The ease of flying with 4 mobile children, not requiring the assistance of TSA Cares or any additional help, not having any additional stares, not having the stress of getting on the plane first to be the last ones set up and buckled...it was the worst type of slap in my face.  Laeya mentioned more than once how it was the first time she could remember not skipping the lines and not going on the additional assistance lane to get through airport security.  She continued to bring you up during the flight, saying how she envisioned you and your friends flying with us up in the clouds.  The good mom in me let her keep talking out her grief...the post-Sonzee bereaved mom was screaming in my head for her to stop talking because I didn't want to hear all my thoughts being spoken aloud.  I didn't want to be crying at the airport or on the plane.  Life is just an extra dose of hard. 

In preparation for our flight, the week was spent packing Meena, Noam, Aba, and me.  I also ended up getting a new phone before we left Sunday, and despite the sales guy saying "now the hardest part, picking the color", it was actually the easiest decision choosing it to be red in honor of you.  I bought Apple Care and it supposedly is difficult to break, so for now I will just keep it uncovered and have the red visible 24/7.  The alternative is to get a 3rd phone case made up of our last all 7 of us favorite family pictures circa summer 2018.  

Meena had a quick tryout for the competition team for gymnastics on Friday.  She can go on the team, but, unfortunately, the gym we went to cannot make accommodations for her missing the Saturday practices, so when we return in August, we will find another.

We went to see you Sunday before we left.  Aba took a picture for fathers day with you and everyone else.  A lot of people have asked to go and visit you while we are away, hopefully, some do.  Auntie A is making you your 1-year 5-month rock and she will place the July 4th rock I left for her to give you next week. I got Aba a new pair of red socks with your picture from you for fathers day and he was very happy to receive them.

Anyway my love.  We leave in a bit to drive to Pennsylvania to stay the night before dropping Laeya and Tzvi at camp.  This house is sure to feel an extra dose of empty besides the obvious of you and your belongings not taking up every square inch.  Remember to be sure to keep an eye on them!

Love you and miss you!

Until next time.

Love always,
Ema

The Mighty Contributor

Monday, June 14, 2021

71 weeks

Dear Sonzee, 

Today is another Monday you won't be part of, and it has been 71 since we last cuddled.  Next Monday I will be sitting in what has become our NY home, or maybe outside staring at the trees where I used to sit to blog while we are away for the summer.  I am trying to prepare for all that is to come next week but knowing my history, it won't matter because something I haven't prepared for will happen.  

This past Friday your siblings finally finished school for the year.  It is hard to believe next year Laeya will be in 6th grade.  I try not to think about you going into 1st.  My mind has challenges with the image because sometimes I create a completely fictitious one that involves you completely healthy and unlike the Sonzee we all knew and loved.  

Last Thursday was grief group.  The activity this week was to write a letter "from you" to myself (and aba's self).  I have done that a handful of times since you have been gone and it is always my biggest struggle.  I stared at everyone writing for the first 5-10 minutes, nothing could be written, but I finally found a use for those little tissue packs they have in our individual baggies.  I eventually managed to get some words on the page, but I felt like it was such a blah letter.  Aba and I don't typically talk about our groups with one another, but on Friday he asked me if we also wrote a letter, and then he showed me his.  His was far better than mine and I was a mess a few lines in.  

I found glitter/sequin boots on Alibaba for Tzvi's hockey team.  It was such a daunting task to be able to find the exact colors I wanted, it was literally a multiple hours endeavor of searching.  I hope when they arrive (if they arrive), they are what I am anticipating.  We got his tournament schedule.  There are 7, but we know we are missing one because we will be (G-d willing) in Israel. Yup, we are actually scheduled to go, sans you and nurse Paige.  That is sure to be a tough trip since it will be our first "complete" family trip, and it was supposed to include you.  Who am I kidding, life is tough regardless of any specific plans.

Please help us all remain healthy this summer, especially this week and throughout camp for your siblings.  Know we miss you a LOT!  

Until next time, 

Love always, 
Ema


The Mighty Contributor

Monday, June 7, 2021

70 weeks

Dear Sonzee, 

I am not quite sure how I just typed "70 weeks" as the heading to my letter to you.  How have I written you on 70 Mondays? The lump in my throat feels huge and the tears are already fighting with me.  This part of life just doesn't make sense, probably because it focuses on your death.  A concept that is honestly still challenging for my brain to wrap itself around.  Children aren't supposed to be buried by their parents.  You should have still been here these past 70 weeks.  Then again, you should have been born with a healthy CDKL5 gene also, so I suppose that discussion is literally for another life.

This last week was spent packing your siblings for camp. I had a minor breakdown while packing Laeya as I realized I won't ever pack for you again.  I packed some of her items into your large medical supply baggies, but not the ones that were still labeled with your information. Those I put back inside the largest bag and left them be.  I won't remove your labels and I won't use the bags ever, but they won't ever be thrown out.  Well, not by me or willingly at least.  Some of your stuff will always remain, and that is just how it will be.

Laeya is a little nervous about how to mention you to all her potential camp friends.  She asked me yesterday what would be the best way to mention you died.  I think she is worried it can be too intense, but also I think she worries about not mentioning you.  She wants to bring her Sonzee Bear, but she is worried about something happening to it.  We will have to figure something out for her.  I know you won't be too far from her while she is there, I hope she will feel your presence.  Who am I kidding, she would feel it before me. 

I have found myself so torn lately on this whole grief thing.  Part of me wants to lean into the fact that this was G-d's plan, and the other part of me is just so angry that this could be part of any plan.  It almost feels like I would be cheating if I attempted to accept the whole "plan" idea, but then part of me wonders if I did accept that if I would actually believe it if it would make me feel any better, and if so, for how long?  It is just so hard.  It all sucks. There is no way around the suck.

I am working on two projects that are inspired by you.  One of them is expanding the PEMU PJ closet that we started.  I am really excited about the direction that is heading.  We have a matching donor that will match up to $4500 and we are at $736 but have some time to go.  Regardless, we would be getting $1472 if it ended tomorrow and that is still amazing.  The other project will be announced within the next 2 months and I am really excited! I would much rather you here, but you are making such a difference in your death, and I will continue to ensure that remains the case.

Anyway my love.

I hope you are staying healthy and having a great time.  Be safe and remember you are loved and missed!

Until next time.

Love always,
Ema


The Mighty Contributor

Sunday, June 6, 2021

When?

This last week I had a conversation where I mentioned that someone had lost a child.  The question was asked about the age of the child and I responded with I wasn’t sure but it was years ago.  The reply to that statement was along the lines of  “oh, well it’s been so long, whatever” I repeated the words in my mind while no less than 100 of my own thoughts filed in. “What?!”, “Did I just hear that correctly?”, “Did anyone else hear this?”, “Did they forget who they are talking to?”, “Did they forget Sonzee?”, “Is 1 year and 4 months also too long?”, “When is my time up?”

The conversation moved onto something else because there was no amount of time to say anything that was circling in my mind aloud, also, what would have been the point?! But days later and the conversation is still fresh in my mind.   I remember being told at the beginning of this grief journey I had 18 months before people will expect me to be over it. I remember feeling relieved every time I mentioned Sonzee died and I was met with a platitude vs hearing the words “you’re not over it yet?”, Or a similar knife cut phrase.  But technically there are only 4 months left on my timer and then I guess the compassion runs out. What then? 

How do you make someone understand that burying a child is something you NEVER will ever get over? Can someone who has not buried their child actually fully grasp that? Is it worth explaining that burying your child is NOT the same as burying a pet, a parent, a grandparent, a sibling and while maybe people can move on from those deaths, parents do not ever move on. (That is not to say any of those listed above should be moved on from either, it’s just to emphasize the loss of a child is not even on a comparable wavelength).

The worst part of hearing the words “oh, well it’s been so long, whatever”, was the reality that everyone else continues to move on.  Life continues to move on.  We look like we have moved on.  We go out and Sonzee is not with us. We act like life is normal.  There is no stark reminder that we once had 5 kids in tow.  She is for all intents and purposes easy to forget.  Maybe it’s our fault for not bringing her up in that moment? Would the statement have been said if they remembered that in a few decades I’ll be in the same boat of “it’s been so long, whatever”? I guess I would like to think if they remembered  that they would not have said that or else that means they truly believe those words, and if that is the case, I have to ask when is my time up? 


The Mighty Contributor

Thursday, June 3, 2021

1 year 4 months


Dear Sonzee, 

I wanted to write a blog post on Tuesday because it was the new month of June and I have so many feelings related to CDKL5 awareness and a new month, but then time slipped away.  I was going to write one yesterday, but then the time also escaped (how when you aren't here remains a mystery still).  Then today I sat down at my desk, looked at my phone, and realized today is the 3rd.  How did that fact escape me?!  How did I forget about my monthly post to you?!  Man, this month continues to get more difficult.

In a few hours, it will officially be a year and four months since I last held you and walked you out to the gurney that was placed into the back of a hearse and driven out of our driveway.  The image of the day still painfully fresh in my mind, and all clear as can be.  I still remember walking past all these people that somehow managed to find their way into our home and your room what felt like the exact second you died.  I still remember trying to avoid eye contact with them all because I knew I wasn't strong enough to hold back the tears that would have come and I also wasn't ready to display that in front of everyone.    

I immensely dislike this whole grief cycling thing.  There is a definite pattern to it, I just have not figured out exactly what it is. I just know things are ok and tolerable and then bam, the anger and sadness return in a second.  So much anger! So much sadness!  Part of me feels I should have a sign on the back of the car or wear a necklace around my neck warning people to not tempt me with breathing near me because I don't have the patience to deal with it.  Mrs. Brittany and I have discussed going to that smash place, I think I need to book it for us ASAP.  Maybe I will feel a bit better? Maybe it will at least take the edge off?

3 days in and I am already wishing for June to be over.  Packing is fully underway for our departure in 17 days, but mentally, I. am. NOT. Ready.  I wish I knew how to prepare myself for what is to come in 3 weeks, but I know better to even try because it will only result in something I hadn't even considered emerging and throwing me off my already derailed course.  I will just pray you can help me through it in some apparent way.

I wonder so much about what you have been up to over the last month, really, the last 16.  I wonder who you are with and if you are wishing you could be back with all of us.  I wonder if you miss us like we miss you, and deep down I pray that you don't because I would hate to think of you feeling like I do.  It makes me nauseous thinking of you missing us and having none of us around to make you feel better.  That concept is too challenging for me to consider comprehending, so I just imagine you like a cute little fairy with a wand bopping around smiling with a group of your friends causing some raucous. 

I don't think I will ever fully grasp this whole concept of time.  16 months since you were last here, a lifetime to go until we (hopefully) are reunited.  Words of encouragement to myself that we will be reunited despite the panicky concern I feel over "what if" that isn't a fact.  Never quite knowing how that ending will pan out because I won't ever learn until I am no longer alive myself and that doesn't sit well with my type-A self.  So for now, like I do at the end of every letter, I will wish you the best, and ask you if you can come and visit.  This month I will ask you to make sure you look after your brother and sister as they venture off to their first summer at sleep away camp and I will ask you to make sure you are with me as we enter our same rental in NY, this time without you.  

Until next time my love!

Love always, 
Ema


The Mighty Contributor