Tuesday, March 30, 2021

60 weeks (a day late)

Dear Sonzee, 

60 weeks.  I feel like for some reason 60 weeks should mark some sort of significant milestone, but it's just another week.  Another Monday that will come and go marking the physical absence that we feel regardless of the number of minutes, hours, days, or weeks that continue to go by.  60 weeks in terms of life is a pregnancy and a half.  Weird to think that in just another 20 weeks it will mark the birth of 2 different pregnancy journies (not mine) that will have started and finished since your absence. For us, there won't ever be a true celebration no matter the amount of time that will continue to go by.  For me, it will just continue to be the same tug of war within my brain that can't understand how such a small amount of time and a substantial amount of time have simultaneously passed.

This past weekend we celebrated our 2nd set of Passover seders without you. It won't ever be the same.  It is weird how we smile and laugh and have a great time, but there is always this shadow, an elephant if you will that fills the room. At least for me and I am pretty sure for aba as well.  A beautiful bouquet arrived right before candle lighting Friday night in your honor. It still sits on the dining room table, all red, various types of flowers, all of them in various stages of bloom.  I hope it lasts the entire holiday, but only time will tell.  We continued with the 2nd annual Passover break tradition of having a bounce house in the backyard this week.  This time it is a combo, bounce/slide/obstacle course, and your siblings have actually not complained, yet.  They have spent many an hour out there and so far so good (and nothing broken...yet).

I am working this week (yay!) so aba and savta are hanging with your crazy siblings.  Hopefully, they won't drive them completely insane, and maybe there will be some food left in the house when I get home tomorrow.  They have literally eaten non-stop, it is insane. Ziva is getting her tonsils removed tomorrow, so if you could just make sure she is being taken care of during the procedure that would be greatly appreciated.  

Anyway, my love, nothing is the same since you have left us and nothing ever will be.  I miss you beyond words and comprehension!

Until next time.

Love always,
Ema


The Mighty Contributor

Friday, March 26, 2021

Passover 2021



Dear Sonzee, 

Tonight starts the second "official" year of significant holidays you will be spending elsewhere.  No wheeling your pink Rifton chair up to the table or making sure your red ppod is within sight.  The pink chair is tucked away in your bedroom, but the red one is keeping one of your friends safe and comfortable.  To say I am less than excited to celebrate any holiday since you've been gone is quite an understatement.  My general disposition is blah with a very close side of about to meltdown into tears at any moment.  We didn't even have the house Pesach ready until yesterday and honestly, not even all of it was, just the kitchen area I was cooking in.  I wasn't even stressed, to be honest, my ability to give any amount of care was nonexistent. Fast-forward to 4:37pm just a few hours until Shabbat comes in and everything is somehow finished and ready for the 3 days of radio silence.  

Savta is here, the last time we saw her was for your celebration of life.  Who knew what would transpire over the last year when she flew back to Florida?!  She is with aba and your siblings buying them all new dressy clothes for the holiday.  I tried, I really did, I had the websites up to get your sisters matching dresses, and your brothers matching shirts and pants, but then like every other time I couldn't put anything in the cart.  It is just too difficult to only buy 2 dresses, so I buy none.  Then savta mentioned she wanted to take everyone to get clothing and I excitedly told her yes!  Maybe they won't even match, but at least it won't taunt me that there are only 2 dresses at checkout.

I drove myself to Starbucks to get a cold brew. Aba packed all my yummy syrups into a box and put it in the garage and it was far too much work to make my afternoon coffee, so I took myself on a solo trip.  The drive-thru line felt like it took forever, and as I waited my letter to you began to write itself.  I find myself now outside on the porch swing you and nurse Karen spent many an afternoon on. The weather is absolutely perfect, the sun is in just the right position that it isn't in my eyes but its warmth is still able to be felt. The only thing missing is you.

I hope wherever you are celebrating your 2nd Passover seders tomorrow and Sunday night you are seated at a huge table with saba and everyone you want to be with who can be there with you. And I hope you get the same or similar silver sticker that we will give to Noam after he sings the 4 questions when you have your turn (or maybe not because you will find it babyish?!). Just know you will have a place by the table if you can pop in and the huge bouquet you will see on the table is in your honor.

We love and miss you, baby girl!

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, March 22, 2021

59 weeks

Dear Sonzee, 

Hey baby girl it has been one insane week!!! To start it off last week Meena started a tumbling class at gymnastics and to her delight started to work on her back handspring.  In typical Zaila fashion we landed at the urgent care getting x-rays and thankfully despite them leaning toward an avulsion fracture of her ankle, it is just a sprain.  The bruise looked awful, but in true Meena fashion without it being officially labeled as broken she went back to class Tuesday and worked through the pain.  Aba and I made her halt her tumbling around the house since, but by yesterday she was back to cartwheeling as her main method of moving around and she says it doesn't hurt as much, so I think it is definitely feeling better.  

As I mentioned in last week's letter, Tzvi had the state tournament this past week. It started on Thursday night for him and 3 game wins later he ended up in the final championship game last night against the one team that gave them their 2 losses this season.  I have never been more nervous about a sporting event in my entire life (that I can remember).  Aba was pacing, I was standing and sitting and jumping and screaming! It came down to an overtime shootout and on the 3rd shot his teammate made an amazing goal and they won! It was insanity! Your brother slept with his medal and is bringing it to school.  The trophy will find its way to our house within the next few weeks for a few nights. I mentioned to aba my predicament of how to take a picture with you being part of it. I am not sure the cemetery is the most uplifting background for a state championship trophy, but I have to find a way to take a sibling picture,  this is one of my #lifeafterSonzee challenges.

The hardest part of being so insanely proud of him and so happy for him is the gut-crushing pain that comes within a second of remembering you aren't there with us being part of it.  Nurse Paige saw the post of the pictures and videos on Facebook and said "congratulations".  I mentioned back to her that in another life you and she would have been present to see it yourselves.  The reality of that statement hurts me beyond words and makes it so hard to stay in the happy present moment of being one ecstatic ema! I hope you were able to witness his victory but from a far better view than we could have given you in your wheelchair in front of the glass bundled in gold sequin boots, a Sun Devil hat, and tons of blankets.

This coming week will mark another Passover seder you won't be present at.  Noam has been singing so many songs this week I think he is excited.  We are having everyone here for both nights.  Savta will be coming for the first time in over a year on Tuesday.  The last time we saw her was when we celebrated you.  Everyone is very excited and looking forward to her visit. I wonder what you will be doing? Do you celebrate the holidays where you are? Will you be with Saba? 

Anyway my love. I miss you so much!  Have a great week. Stay safe!

Until next time.

Love always, 
Ema


The Mighty Contributor

Monday, March 15, 2021

58 weeks

Dear Sonzee, 

Every week I sit down to write your letter I begin with turning on my "Sonzee blogging" playlist.  The first words of the first song begin with, "A million thoughts in my head, Should I let my heart keep listening".  It's always the truth, no matter how much time has passed since my last letter to you.  This week without you was challenging for so many reasons, and all the challenges brought more than a million thoughts into my head, but over the last 58 weeks, I have learned that there really is no way to mute them so my heart has no choice but to listen.

This week was my spring break, really, it was our spring break.  I did my best to try and ignore the fact that this would have been our 3rd school year having our breaks together.  For the last 5 weeks, I have done a really great job drowning myself in so much work that it was helping me channel my grief (whether that is right or wrong I really don't know).  I was a little lost this last week, I tried to keep busy, and I was successful, even though I still didn't get everything accomplished I had set out to do.  I never did get up to Bear Pines, and I am honestly really sad we missed another amazing snowfall.  Your brother had hockey, again.  (on that note, this coming weekend is the state tournament, his team is seeded #1 for his division, if you could pop over this weekend to watch him, I am sure he would (never admit how much he would) love that. 

After two classes Meena moved up a level in gymnastics.  I am not really sure I want to support this endeavor, but here we are.  For now, she isn't going on the competition team, we will see where this takes us.  I was honestly enjoying the restrictions of Corona, it was so nice not to have 1000 places to go after school.  Speaking of life returning to normal, we will be going back to New York this summer.  I have already begun to dread this idea.  What was once my most looked forward to event of the year has now turned into something I am honestly fearing.  Maybe it is because we will go to the same house we have always gone to, the one that you spent all of your summers but your first one in?  Maybe it is because summers in NY were the place we went to escape life, to escape our reality of life with CDKL5? Maybe it is because the last summer we were there was the worst summer of your life and we never got to do the redo? Maybe it is because, for the first time in 11 years, I will have a summer with no children at home with me during the day because everyone will be in camp and you aren't here?  Maybe it is simply because we will be thousands of miles away from your current home and I don't know how to cope with that?

I guess I will continue learning, no matter how hard these lessons are, how to keep moving forward.  But now, today, 3 months and 5 days until we embark on our first airplane trip and summer relocation without you I am already feeling the pit of my stomach go hollow and the air getting sucked from my lungs.  These reminders of how life continues to go on can just be downright suffocating.  What I pray as I take my deep breaths to try and ground myself, is that I really hope you are living it up wherever you are! I hope you and all of your friends are able to do everything and anything you want and that you feel nothing but an immense amount of happiness. 

I wish this all could get easier, and while there are differences from week 1, missing you only get's harder.

Until next time my love.

Love always, 
Ema


The Mighty Contributor

Monday, March 8, 2021

57 weeks

Dear Sonzee, 

It feels like it has been forever since I wrote to you, but the reality is, it has only been 5 days.  My perception of time continues to be on a scale with a varying level of complexity.  My long drives to and from work give me a lot of time to either not have any thoughts at all or have too many.  The too many tend to circle around the topic of how it has only been a year since you were here, but yet how it feels like an entire lifetime ago.  It still continues to feel like it never happened, but the memories that are etched into my mind can win that argument in a second.

I had a conversation this past week with someone who might at some point join on a similar but obviously completely different journey to yours/ours.  The reality is, their journey won't be yours, it won't be mine, it won't be ours, but yet the idea of the potential has me gasping for air.  Part of me feels like it is just too soon for me to know someone who will experience the life of the unknown whom I didn't meet because of your unknown.  Part of me feels angry with Hashem that this crap continues.  I also feel so torn because I want nothing more than to be able to be there for anyone struggling living a medically complex life, but sometimes it is just so freaking hard to go back. My brain spends a good portion of the day staying present, not traveling down the road we have already traveled, it doesn't take much to send me back in time, you know the time you were here living that life.  The life itself was hard, but remembering it without you here now is like a dagger.  I feel like Hashem is clearly doing this for a reason, another one of those unrevealed ones, but one I am challenging myself to try and embrace.  After all, you lived your life when you did and how you did for a reason and I am here to continue to tell your story and be a support for others, but man, it is hard.   

This week is spring break for me, but not for your siblings.  I have jam-packed my days with doctor's appointments and decided to make it a priority to do all those things I never take the time to do.  Let's be honest, it is also a good way to add distractions to the fact you aren't here having your spring break either.  I am debating going to Bear Pines myself for a night this week, it is supposed to snow, I think it might be good for me to get away.  On that note, I am going to see Elle in a month!  I am beyond excited! Hopefully, I can also find a way to see Jenn too! It's been a year and the last time I got to see them they were holding me up as we all said goodbye to you. 

Tzvi's hockey team is seed #1 going into the states in their division.  They have been having a couple of recent games that haven't been their best, so hopefully, they will pull it all together for an overall win!  Tzvi FINALLY got a penalty! I was so proud! I have been bribing him all season.  It isn't that I "wanted" him to have a penalty per se, it was more that I wanted him to play as hard as he could and be aggressive, and this kid has become one heck of a hockey player this year.  He has been fortunate enough to be playing with kids an entire year older than him and now I catch myself during games not even realizing that it was him who has the puck or made a play.  He has come such a long way, aba and I are so proud of him.  Meena taught herself in 15 min how to do a one-handed cartwheel and a backbend, I keep trying to tell her gymnastics competition is not happening.  She wants to do a back handspring, I am not supporting this. Laeya is 4 books into the Harry Potter series and she is reading so quickly.  Noam loves his nursery school life and I am so glad we have sent him.

Anyway my love I need to run.  I love and miss you!!! Have fun, and stay safe!

Until next time. 

Love always, 
Ema

The Mighty Contributor

Wednesday, March 3, 2021

1 year 1 month


Dear Sonzee, 

We have now entered into the first full month of this year that it will be your second time not experiencing.  It has now been 2 full years since you have lived during the 4th-28th of February and the 1st, 2nd, and 3rd days of March.  In just a few more weeks, the entire month will pass without you, again.  Those types of facts are the hardest for me to think about.  They are the ones that haunt me, and also the never-ending ones.  There will always be a first when it comes to not only all of your lasts but your absence in general.  That will never get easier to process.

This last month has been...weird.  You know by now "weird" is my go-to word for this whole journey and experience.  I felt like my mind was so distracted I spent a lot of time ignoring my grief.  I know, that was the opposite of my goal for this year, but it just happened.  Your anniversary and birthday were really really hard for me, it is almost as if my brain completely shut down afterward to preserve my ability to continue to function. I took on as much as I could after your birthday in terms of work and your siblings' activity schedule. I wonder if it was one of those deliberate yet subconscious actions so I could let all my thoughts settle and continue to be able to get out of bed? 

So much continues to change since you've been gone.  I look at everyone with large families and I find myself thinking about how that used to be us. Four kids seem so few compared to five.  Four for some reason doesn't count as crazy, or insane.  Four kids don't hold a candle to five kids and one with special needs.  Once upon a time, I would be talking to someone I knew and they would introduce me to someone new and mention that I was some superstar for being a mom because I was a mom of five, and one of the children was a medically complex child.  It used to be awkward when someone would brag about me being a mom in that fashion.  Now I miss that praise.  Now, it is just that I am a mom of four.  If I say anything, it is that I am a mom of five and one died, but then for some reason, I still feel the need to say you were medically complex.  Maybe it is because I feel like on the regular days I have lost that badge of honor, or maybe it is because it is less awkward if I let the person know there was a reason you died?  

This month I finally decided to become an actual employee at FBC.  I think you would love it that I did that.  Nothing has really changed except I get all of the swag.  You know how much that excites me!  I still can't bring myself to go into Central campus except for quick trips.  My heart isn't quite ready to walk your hallway and peak through your classroom window and not be able to find you sitting with Corrinne.  It is just too much too soon.  I hope next year things might be different? But for now, I will continue to spend my extra time at East and West. I have slowly started to use some of your switches, switch-activated toys, and other communication items.  It makes me smile, and that lava lamp is really cool!

This month your home was finally completed. It is really beautiful, but for some reason, I don't feel the sense of completion and closure I thought I would.  I think that was probably unreasonable for me to think it might fill some of the hole having this done, but it still feels just as empty and broken.  I am bringing you 6 more rocks today along with a new soapstone bear because during all of the stone deliveries it seems to have disappeared. Laeya painted your monthly rock for today and she did a great job. Meena and Noam wanted to decorate one for you as well, so you will have some more shiny rocks.  I have your Purim rocks (it wasn't until Pesach last year that I started to make you the rocks for the holidays so I have now completed the one I missed for last year). Laeya made a rock for you years ago that has been in your bedroom and it makes sense to bring it to you.

So, Sonzee bear, I am sure you have been distracted with all of your newfound freedom and abilities, but in case you forgot or haven't realized, it has been 1 year and 1 month and I have not seen you.  While I appreciate you visiting whoever needs to see you, (and your sister every time she makes a request) who would I be if I didn't lay some good old Jewish mom guilt on you and say..." umm, hello!! have you forgotten where I live?!?"  

I will continue to pray that you are having your best time with your friends! Know that I love you and miss you beyond words and hope I need a visit from you soon (on whatever measurement scale you use to determine that).

Until next time my love.

Love always, 
Ema       

The Mighty Contributor

Monday, March 1, 2021

56 Weeks

Dear Sonzee, 

So much has happened in the last week I have intended to write you multiple letters, but then time was short and as it inched closer to today, I figured  I would just save it all.  Last week a new friend started at FBC.  From the initial meet and greet, I felt like she was going to be very similar to you, and then I met her.  I was 100% correct.  She was having a tough day on Tuesday and I decided to take her out in the wagon because I know how much you loved being outdoors.  She didn't instantly calm, but within a few minutes she was enjoying her wagon ride and she even took a 30-minute nap after returning, something her mother stated she hardly does.  I really enjoyed my time with her, so much so my mind got lost in the moment and I was late to one of my virtual sessions.  A few of the kiddos remind me of you, it is equally amazing and equally challenging, but thankfully the tears are trained to remain inside my eyes and I can usually play them off (at least I think I do).

Laeya had another one of her malachot fairs at school.  I stopped short when she tossed all the invites at me and as she casually mentioned she created another one for you since when she davens for you to come you normally do.  I told her since she was so good at that, it would be best for her to talk to you.  Man, that girl has a knack for making me speechless. I have no idea what to tell her.  I was relieved she didn't ask me if I thought you came. I had been trying to plan a response, but couldn't find the right one. They could all potentially lead to her rebuttal of "how do you know?". Umm...well, I don't.  So, I am so thankful she must have felt you came.

As far as Tzviki's hockey games. I am sorry for all of the short notice requests, so I am going to let you know in advance his state finals are coming up in the next 2 weeks, and it would be great if you could help guide him in those games.  You know, just set him up for success and let him work out the rest.  His team has been doing amazing all year, sadly lost their 2nd game of the season yesterday, but I just hope they don't fall apart at the end.

Your bench was finally placed. I didn't like that the front part of the legs wasn't polished.  I didn't know that was a choice, but apparently, not even the staff all do, so it wasn't offered to have all the parts of the legs polished.  We are going to have new legs made. I understand they match the matte portion of the front of the yahrzeit candle marker, but I just don't like it, it isn't perfect.  Which makes me wonder if I will consider anything perfect when it comes to your final home?

Purim was this last week.  I never have cared for the holiday since you were born because we always seemed to miss it and have to have someone read us the megillah at the hospital or have someone come sit with you while I went to be with your siblings.  I was going to protest it completely, but I made a compromise with myself to at least hear the readings. I followed through, but I still dislike the holiday immensely. 

To wrap up the week, yesterday was rare disease day. I am a little bitter about the day, to say the least.  I wrote a post that I am sure offended some, but at this point on our journey, I am starting to care less and less about that.  I just feel robbed by CDKL5 in its entirety so I have zero positives to say about the genetic mistake except that it brought some amazing people into my life, but as far as anything about anything positive in terms of characteristics of the genetic typo, nothing to say besides it kills.  

Anyway my love, I miss you tremendously!

Until next time.

Love always, 
Ema

The Mighty Contributor