Monday, November 21, 2022

146 weeks

Dear Sonzee,

Today, it’s been 146 Monday’s since you left me and today your little brother became one day older than you will ever be…today he turned 4 years 11 months and 24 days…you will forever be 4 years 11 months and 23 days…I won’t lie and say it’s ok or that I am fine. I will say I survived the day, I received some extra hugs, texts, and calls, but for the most part I mastered my usual hide behind the smile routine. Then I laid down with your brother - like I did with you for the last time 146 weeks ago - and I let the tears flow, because while it isn’t something that is thought about often, the reality is, it sucks, it’s sad, and it’s so incredibly unfortunate. I would love to know the little girl you would be now…would you have ever sat? Would you have ever taken steps outside of your gait trainer? Would we have ever stopped your seizures? These are all answers I won’t ever receive. But my wishes for you over the last 146 weeks is that you have achieved all of those accomplishments and more. I miss you baby girl more than words can ever express!! 

Until next time.

Love always, Ema

The Mighty Contributor

Sunday, November 20, 2022

4 years 11 months and 23 days

Dear Sonzee, 

Today is the day...just one of the days I have dreaded since the day you died 2 years 9 months and 17 days ago. Tomorrow is another day I will dread and next Monday is one that I just cannot even begin to truly process. Today, your baby brother turns the age you were on the day you died. He called you "Dondee" because he couldn't even say his "s" when you were alive.  It took him the last 2 years to start to understand that death meant you wouldn't be coming home, but he still doesn't really grasp where exactly you are. (I don't think any of us really do to be honest-the concept is just too abstract).

I spent so many days crying in anticipation of today and the week to come that today, despite my heart beating a little faster, and feeling that extra drag in my step, there are no tears...yet. Maybe it is because I am pretty preoccupied in NY with your baby cousin Isla. In a few hours we fly back to Phoenix. 

Today, as Noam turns your same age, he will be starting his debut hockey career. You were in the middle of life and death during the same age equivalent time. It is a celebration of sorts that he is reaching today, as is every day we all continue to live and breathe, but birthday and age celebrations aren't what they once were to me.  There is a shadow that is always cast. There is a piece of my heart that can't join in with the rest.  Most people cannot understand.  Most people focus on how I am supposed to be dealing with it because it wouldn't be fair to Noam if I didn't. People don't understand the challenge of celebrating a younger child out aging their older one, and lucky for them they don't have to, so it is easy for them to say what I should be able to do. 

After today he isn't technically younger than you. He will (thankfully, and I hope) have age experiences you weren't afforded. I am grateful for that. I know what it is like to be stuck in the alternate universe of not aging, so I will celebrate the essential victory of what is tomorrow, but it doesn't come without the knowledge of you now becoming our youngest. Forever our 4th child who will become younger than our 5th. Forever 4. Forever 4 years 11 months and 23 days. Forever and never to be the big sister you should have been. While I won't let that take away from Noam's ability to continue (and I pray he does) to outage you every day for the rest of his life, I will also not ever forget that that fact is one and the same, and neither should others. 

Until next time baby girl! I love and miss you!! Hope to see you in the sky!

Love always, 
Ema

The Mighty Contributor

Wednesday, November 16, 2022

144 & 145 weeks 2 days and 8 hours

Dear Sonzee, 

145 weeks, two days, 8 hours (and at the time of writing this word, 7 minutes) have passed since you were last here with me.  The last 2 weeks have gone by, with each Monday coming and going with me intending to write you a letter, but the weight of grief disabling my intention.  There is still such a heavy breath-crushing grief that happens.  Over the last two weeks, FOUR more CDKL5 siblings went to be with you.  Maybe you already knew that? Perhaps you were part of the welcoming committee for them?  Maybe there is a place in heaven where you meet with all of those who had a CDKL5 mutation and you get to celebrate with all you are all able to do now?! That brings happy and sad tears to my eyes simultaneously. On the same note, my heart, albeit numb from all of the loss CDKL5 brings, has broken more.  So much so that I had to take the stomach meds that I haven't had to take since you were here and my stress was insane.  It doesn't help that we are coming up on Thanksgiving, which has been tainted since the last one you were here for when aba had to rush to Florida because Saba went into a coma.

We are also 4 days away from your brother being your exact forever age.  As I was laying with him tonight, playing with his hands, I wondered if yours were really just as small. I thought about holding his up to your handprints, but that would just make things worse for me.  I thought about the last time I laid down with a child his age, it was you, and at this exact age, you were dying.  We snuggled non-stop for the last two weeks of your life.  In fact, I didn't even go outside, I had no idea it was cold until I placed you on the gurney.  I am stuck because there is a part of me that should be relishing my last baby being four and turning five, but I am just counting down the days until he is finally five and I don't have to be haunted by these beautifully horrible memories of you. I should be thankful, after all, everyone wants their children to stay young forever, and I will always have a forever four-year-old.  It won't matter how many years continue to go on. 

For the last two weeks, I haven't been able to muster the strength to compose a letter to you.  The reality is that to write you a letter means I have to allow myself to feel all of the emotions that I have ignored during the previous week.  When it becomes too much, I skip it altogether.  The problem is that when another week goes by, more weighted grief is added on.  The burden becomes suffocating, and the only option is to force me to deal with it all. I know that is healthier, but at the time it seems easier to push it off. 145 weeks has taught me, it is not. 

The last two weekends we have actually been home. It has been nice (and also short-lived, as your sister and I head to NY for the weekend, again).  This past week aba and I went to a smile on seniors Chabad cocktail event.  I have to admit, and this will be the first time I will be saying my thoughts out of my head, being around that community makes missing you harder.  The best thing you did for us was flood 19th street.  It is so incredibly hard to be around all those people who were there during your life. It probably doesn't make much sense, but does anything when it comes to your death? I managed to fake my way through it all, even with smiles and laughter.  My motto always was "fake it 'til you make it" (it is one I have successfully mastered). 

This week your brother finally graduated from Goldfish at swim!  It only took him 3 years to move out of that level. Not to compare but your other siblings were far more advanced when it came to being around the water. It is ok, he is just ensuring we stay a Hubbard family for another 10 years.  On that note, I have been looking at older pictures more over the last two weeks and you have so many with coach Ed. It is impossible to comprehend you are both not here, but I do hope you are swimming together! Your floats are still hanging in the same spot, on the same hooks, I wonder if they are ever used?

Over the last two weeks, I (accidentally) clicked on a video of one of your seizures.  It was 2 minutes long and I was locked on it for 1:04 until I couldn't keep watching. It made little sense because my eyes filled with tears over thinking how I hate watching you seize and I never want to see you seize again, to missing both?! Can something please make sense?! I wouldn't wish for you to be here just for me to watch you seize but reiterates that you are gone.  Again, this is a fact my brain is well aware of, but one my heart still tries to grapple with. 

Anyway, baby girl, I will do my best to write to you on time this coming week. I know I have intentions of writing more, we will have to see how it plays out. Have a great week.  Enjoy your freedom! Come and visit! I miss you a lot!!!

Until next time.

Love always, 
Ema  

The Mighty Contributor

Thursday, November 3, 2022

2 years 9 months

Dear Sonzee, 

Another 4+ weeks has come and gone, meaning another month passed us by without you here.  This will be the last month that your brother will be your younger brother.  Well, I suppose he will *always be your younger brother, but not when it comes to his present age.  In 25 days, he will turn an age that you never were afforded the opportunity to.  My heart panics and aches more than it does on a typical day. I am really struggling with all of this. You lived 4 years 11 months and 23 days. Your brother as of today is 4 years 11 months and 6 days.  In 2 days equivalent time instead of you living life you had already begun your dying process.  The comparison of dates makes me sick to my stomach, but yet it is something I cannot avoid doing.  It is so hard to watch his life and not compare to how different yours was.

This month felt like the beginning of a very very long hike up an extremely steep mountain.  I try to find little things to brighten my day, like the beautiful fall leaves we saw in Chicago that were red, or the fact that you brought the first snowfall of the season at Bear Pines today.  But, I truly dislike this entire season. I am trying to overcompensate my lack of desire to bring autumn and decorations into the house by going purchase crazy accenting things around the house. I know now it is how I handle the toughest grief.  My inability to control the fact that you died and life won't ever be the same gets balanced out by my obsessive need to try and feel better by buying things. I don't know if aba would agree with it, but when it comes to my spending money to try to make myself feel better, he lets it go since it is just amazon. (We both know it could totally be worse).  The truth is, the happiness is only fleeting and then I am back on my search to fix the broken pieces of my heart...spoiler alert, nothing seems to work.

This month makes me feel further from you and brought out too many realizations.  For example, it has been 3 years since I last stepped foot into an inpatient room at Phoenix Children's Hospital.  By the way, your siblings still call it your hospital.  Laeya told me last night she thinks about you every time we drive by it. (That is a lot).  While on that topic, I am pretty sure it has been more than 3 years since we took you to the emergency department.  So much time has passed but your life still feels like it just ended yesterday.  There are facts I have forgotten, the smaller details of medication names and doses, but my ability to draw up any amount of mls into a medicine syringe without looking is still right on point. (It makes me smile and sing "hooray for ema" every time).

I feel further from the life of being a medically complex mom, but nowhere near living a life as a mom
of neurotypical kids.  I can fake it, I can do my best to fit in, but there will always be you missing.  Like at every hockey game or we aren't boarding a plane first. I still look for the handicap section at every ice rink and think about how we would have taken you. I wonder though if it would be as much. I wonder sometimes if you left us so your siblings could live a more normal life, so I could attempt to be more present for them.  I still struggle with doing just that.  You aren't here physically for me to spend my time with, but I am also not the same person I once was and the exhaustion and the ability/desire to be present isn't always what it should be

This month was just another on the long road of life without you here.  Another month for me to continue to learn how to balance life and death.  Another month for me to continue with my Sonzee-stones of trying to put one foot in front of the other. Another month of being a grieving mother to 4 living children and you.

Anyway baby girl, I love and miss you. Continue to visit me and make yourself known so I don't doubt it.

Until next time, 

Love always, 
Ema



The Mighty Contributor

Monday, October 31, 2022

143 weeks

Dear Sonzee, 

Hi baby girl!  How are you? (I feel like I haven't asked in so long).  Today marks 143 weeks that have passed without you here. That is a lot of Monday's.

Last week was spirit week at FBC. I missed mix matched day, but then got into the spirit mood for the rest of the week.  That included western day, 70s-day, and costume day.  It was fun!  We had Fall Fest, west valley went to the Swift offices and trick or treated and then had a cute setup at school with a fall theme.  It was so much fun to take the kiddos. One of our friends had her Tobii and it said, "trick or treat" and then went on repeat and it was the cutest thing.  All of our friends had a programmed switch of some sort that said, "trick or treat".  The entire time we walked the halls I was thinking about how the kids cannot eat most of the candy they were being given, but I guess it is the thought that counts? You used to love these school days!

Tzvi had a hockey tournament over the weekend. He played well overall, but the team definitely struggled.  They ended the weekend only winning one game.  I tried to tell Tzvi they don't always have to be all or none.  It is like they either win first or are in a consolation game, they need to work on that.

I did my first full week of working out! I did some competitions on my apple watch, and it was really motivating.

Yesterday, Noam and I went to visit you and bring you a lot of rocks. I still have more to paint for you, but we picked up some more rocks to take home to be sure to take care of that.  I also brought you the little ladybug that Mimi's mom sent for you and the gorilla soapstone I got for you while we were in Chicago.  I finally brought you, your first day of 2nd grade rock, which by the way still confuses me and makes me have to recount the years. The cemetery is so much fuller than it was 2.5 years ago. I know that makes sense, but it is just so weird to see. So many painted rocks now because of you. It is really nice to see.  Noam and I walked all around, with him asking me "who is here?" near the majority of the plots. He also was trying to grasp this whole under the ground thing, which he has been trying to do since he was 2. He asked, "Where is Sonzee in the ground", I said, "right here" and pointed to your stone. Then he asked how you got in the ground. I told him that the ground was dug up and then you went in. He then asked if you were sleeping and if it was dark. I told him yes, it is dark, and I am really unsure what you are doing. (It is the truth, and honestly, with his age and the whole death concept I worry that using sleeping will carry over to when he goes to sleep, and I don't want to go down that path.  It is similar to when he asks how you died and if you were sick, which is another word I refrain from using so he doesn't associate sickness with death.  It is tough for sure!) He also asked about your friends. It is hard to answer that because I assume you are with your friends, but I just don't know, so I say a lot of "I don't know buddy".

Anyway, November is tomorrow.  I cannot believe in 28 days, 3 years ago your brother turned 2 and in 28 days from today he will be older than you ever got to be.  Send me some extra love and signs this month please. I feel like I am already falling apart while I pretend to try and keep it together.

I love and miss you a lot!

Love always, 
Ema

The Mighty Contributor

Tuesday, October 25, 2022

142 weeks 1 day 10 hours and 25 minutes

Dear Sonzee, 

Another Monday and Tuesday. My heart continues to beat, but sometimes I wonder how it can with all the pain it feels. This last week brought your sisters and me to New York. I am still trying to recover from the red-eye flight and lack of sleep from all the late nights.  It was really nice for me as well as your sisters.  

New York was cold, but honestly, this morning in Phoenix was colder.  By the end of the day though I wore shorter sleeves walking to pick up your siblings in beautiful low 70-degree weather. Bear Pines is literally below freezing. I see snow for the first time on the 10-day forecast and it might align with our one weekend not currently sold in November, so I may have to jump on and block the dates. 

This week has me wondering more about what you might be up to and have been up to over the last 142 weeks. I wonder what you can't do because I am sure there isn't much.

This upcoming weekend is another tournament for Tzvi.  It is in Scottsdale and Laeya mentioned it has been a while since we have been to visit you so since we will be in the area we should go.  That is now the plan.  Maybe I will have some time to work on some more rocks for you. 

I started to work out this past week. I know, it is something we never thought I would do, but life has been filled with a lot of nevers. It actually came about because of you. As I was feeling extra down about things HopeKids sent an email about a free membership subscription to an online gym with workout classes. I took it as a sign from you and not only have I joined, but I am on day 2 of week 2 of my 8-week program and I am excited to see the end results. Thanks, baby girl!

We are getting closer to dates I have been dreading since you left, I will take all the signs you are able to send me because I am going to need a lot of them.  One month and 3 days until the little man turns 5, and 3 weeks and 5 days until he is 4 years 11 months, and 23 days. It is a mixture of happiness, sadness, fear, uncertainty, and gratefulness. Just come and sprinkle an extra dose of Sonzee strength dust on me these next few weeks, please.  Also, maybe pop into Laeya, she has been having a rough time lately and I am sure she could use a visit from you as well.

Anyway, little bear!  I love you and miss you so much! Come and visit, please!

Until next time. 

Love always, 
Ema

The Mighty Contributor

Thursday, October 20, 2022

141 weeks and 3 days

Dear Sonzee, 

Another week and 2 days have passed. Another Monday (Tuesday, Wednesday, and soon Thursday) without you here.  The weeks are going by at the speed of light that is for sure.  This week brought us the last of the main fall holidays.  I went to Yizkor for you.  I lit a red candle for you and as usual, I missed you.  I have rocks I need to bring to you, but this was yet just another week I couldn't bring myself to go to you.  I want to go, but I just can't.  It feels like I am glued in place.  

This week brought us back to Phoenix from a week and a day in Chicago for Tzvi's hockey tournament and fall break. It was a nice vacation (minus your siblings constant bickering). 

These weeks are getting more tough as I anticipate dates to come.  We are within weeks of your brother aging you.  My heart hurts.  I can't bring myself to buy him a shirt or plan his birthday. (I know I will have to eventually plan-but not sure I can buy the 5 shirt). 

Tzvi's hockey teammates brother left for his make a wish trip today.  Seeing him wear the shirt brought me back. Different diagnosis, different experience, similar feelings. So happy he is getting the opportunity, but when your child qualifies for make a wish, there is a reason.  My heart aches for all of the families experiencing the balance of emotions.  Trying to be present in the here and now while scared of the future, and now, us, living this horrible nightmare of what became of our 4-year-old wish kid. 

I read a blog post from a mom who had twins, but one of the twins didn't make it.  Her words resonated with me completely.  The world assumes she is doing amazing because she celebrates the life of her living children, yet she is falling apart inside. I. can. relate. That is my life. My heart wants to explode from the aching. 

Anyway, tonight your sister(s) (shh-its a secret for one) are going to NY for the weekend.  Hope to see you in the sky!

Until next time.

Love always, 
Ema

The Mighty Contributor



Tuesday, October 11, 2022

139 weeks and 140 weeks and 1 day

Dear Sonzee, 

We have had a crazy two weeks so I figured I would compile it all into one letter to you. Yesterday marked 140 weeks since you left.  140 Monday's.  My mind finds it surreal.  Not just your death, but a lot of the time your life as well.  

Week 138-139 brought us Rosh Hashana.  The 3rd one without you here with us.  My heart doesn't really know how to comprehend all of these milestones.  It also brought a lot of choices for your clothing memory blanket between me and the lady who is quilting it all together.  I am excited and nervous for it to come together.  Shabbat prior to hitting 139 weeks found me curled up on the couch wrapped in the memory blanket someone from Smile on Seniors made for us.  It was the first time I did that.  I caught myself smelling the fabrics to see if maybe they smelled like you.  They didn't.  I feel like I am starting to forget your smells.  Maybe I shouldn't have washed all of your stuff and clothing?

Midway through week 139 brought us Yom Kippur.  Another one without you.  I didn't make it to say yizkor for you at shul. I did light a candle for you. I found myself again snuggled in your clothing blanket, which is becoming a wonderful comfort.  

Wednesday night found us going to a league hockey game for Tzvi. We were ahead the entire game and ended up tying with only 3.7 seconds left on the clock.  It was pretty rough, but at least it was a tie.  Thursday found us on a plane to Chicago for Tzvi's first out of state tournament of the season. 

It was an incredible weekend, filled with amazing laughs and moments and especially a first-place championship finish for the boys!  They deserved it!  They worked so hard and went undefeated the entire weekend. Your brother scored 2 goals in the final game, and I am sure you had something to do with that! (Thank you). 

We raced to close to downtown Chicago for the first days of Sukkot with 6 minutes to spare before candle lighting.  It has been a restful 2 days, and much needed considering Tzvi ended up running a fever Sunday night until this morning.  He stayed home sleeping during all of the meals we went out for.  He is thankfully feeling much better today. 

You were missed during our sukkot meals.  Last night brought us to a house that had a ramp.  I envisioned in another life pushing you up the ramp in your pink wheelchair.  For some reason neither aba nor I brought you up during the last two days.  I am torn on how that makes me feel in hindsight.  During the moment I didn't have the energy, and it turned out neither did he.  I just never know the right thing to do.  It feels as if we are trying to prove something by bringing you up, but when we don't bring you up it feels like we aren't being fair to you. It sucks. Maybe one day I will figure it all out.

Anyway, baby girl.  I miss you a lot! I love you beyond words!

Until next time.

Love always, 
Ema  



The Mighty Contributor

Monday, October 3, 2022

2 years 8 months

Dear Sonzee, 

Today is the third day of October. I am used to summer flying by so quickly, but since summer ended, I feel like this entire school year is going by in record time.  It makes the distance from you feel further, it makes squashing the panic harder. It makes reminding myself you actually existed harder.  It makes life after you that much harder.

Today at 1:08pm also marks 139 Monday's since you left.  The lump that brings into my throat makes it hard to swallow. I don't have to close my eyes to envision you in my lap with me running my fingers through your hair.  I can still see myself in a room filled with so many people trying to avoid making eye contact with them.  I can still feel your weight in my arms as I carried you for the last time down the hallway and placing you on the gurney in the front yard.  I can still remember the feeling of loss and confusion after I came back inside and paced around the kitchen island unsure what I should be doing, but, finding myself organizing while nurse Paige sat in silence writing her notes until she told me she had to leave because her nursing agency was making her.  I still remember your sister, who was 6 at the time, despite seeing you when you died and watching you leave, asking me when you and aba were coming home. I can and do remember it all.  Just like it all happened today.  But it didn't, it was 2 years and 8 months ago.

It is mentally hard without you here, it really is.  There are so many things that just do not make sense.  People ask me how many children I have and I can peppily report I have 5.  They ask how many boys and girls, and I can say 2 boys and 3 girls quick as can be.  I secretly love the astonished look on their face and relish in their exacerbated emphasis related to how busy I must be.  I can fake the smile while simultaneously thinking about how I am actually lying, rather, cheating.  But the reaction that comes when you have five children is much more rewarding than when you say you only have four.  

This last month has allowed aba and I to come to terms with understanding that no matter what, we will always be missing the physical you.  Despite us wanting to be parents to five live children, even if we did, then we should be parents to six. There won't ever be a way to catch up. There wouldn't ever be an end.  We are enjoying this season of parenting older kids, despite how crazy and active it is with all of your siblings' activities and schedules.  The freedom to just go away and be able to plan is not taken for granted. We know how lucky we are.  

I often wonder where you would have fit into this season.  I sometimes wonder how this season would be different. I wonder who would have suffered the most.  I try not to stay in those thoughts for long.  They don't serve me well and there is no point.  The guilt should have been put to rest with you.  Clearly, 2 years and 8 months later it proves it hasn't.  

This month has been hard, but I know the next two will be harder.  I hope you are enjoying your 2 years and 8 months of freedom.  I hope this month taught you something new and gave you a new skill. I hope you have only had happy moments and incredible times since you have entered into your new world. You are missed here more than you will ever know.

Until next time baby girl!

Love always,
Ema

The Mighty Contributor

Sunday, October 2, 2022

Wishes

I laid in bed on Friday night and turned to see what time it was. 11:12pm, my mind said, "a minute ago was 11:11, make a wish", which immediately took me down an Alice in Wonderland rabbit hole with a million flashes in a matter of seconds. It started with thinking about the types of wishes that happen over a lifetime.  When I was a teenager, it was for a specific boy to like me or to make homecoming court. It would turn into wishing to get into specific colleges or an abundance of trivial things. Then life actually started to happen. My world no longer filled with naive requests, the childhood notion of wishing when all the digits on the clock are the same became filled with actual life or death requests. Right now, a hockey family waiting on results of scans to learn if their son is cancer free so I wish for NED (no evidence of disease), a few years ago I wished that Sonzee would die peacefully, for years before that I would wish that her seizures would stop, and that she would stop suffering, not specifically requesting how that would happen. 

So many of the same digits have and will continue to present themselves across clocks and there are wishes I am no longer able to wish for. I no longer have to wish for the suffering to end.  I no longer have to wish for her pain to stop.  I no longer have to wish for her siblings lives to be more normal.  I no longer have to wish for me to stop living my life torn between life in a hospital and the life occurring without me at home.  I no longer have to wish for her life to be better, for her to receive a cure, for her to have never been born with such a horrible genetic mutation.  My heart literally aches at the full 360 that my innocent clock wishes have taken.  My eyes fill with tears that I had to make all the wishes that I did and that I had to literally wish and pray for a life to end, more than once. But, like my 12-year-old mentioned to me, "there are worse things than dying, you know like suffering, like Sonzee did". 

The Mighty Contributor

Sunday, September 25, 2022

137 and 138 weeks (tomorrow)


 


Dear Sonzee,


I decided to combine the last two weeks since I wrote your monthly letter last week and tomorrow is Rosh Hashana. 


There has been a lot of hockey and a lot of craziness going on the last two weeks with everyone’s schedule.  Max came over and swam twice over the last two weeks. He is so cute, but not a complete fan of the water.  Your brother has finally received his back float ribbon and jump in back float ribbon at swim! (Took him long enough). He is becoming more comfortable in the pool, which is nice. I think that is in part to having the pool in the backyard now. Your siblings go swimming close to every day after school.


Tomorrow will make the 3rd beginning of the Jewish holiday season without you here. Hard to believe that is where we are…hard to believe how time is just passing us all by. 


I brought your goto seat from east valley to west valley so it will be used this year! It is nice seeing your equipment out and being used. For 90% of the time I love seeing it! (The 10% happens when I “forget” or it’s one of those days where I wish we had it for you still-although maybe you would have finally outgrown it by now?!) oh, I also brought it your elephant neck pillow so someone can use that as well! I could bring your angel pillow but it’s with your Sonzee Bear epilepsy stuffed animal on your rifton chair and I’m not sure I can part with it.


This past weekend we finally made it up to Bear Pines.  Tzvi had hockey so it was nice the two came together and the house was available for us. (Thankfully a friend cancelled due to something that came up so it made it so we could use it). I am hopefully for a snowy winter because it is so green and so wet I this year! If I could just figure out the flattening of the side yard so we can get the hockey rink to work out!!! 


Anyway! I hope you have an amazingly sweet new year, filled with more amazing firsts and health, happiness, fun times, and special moments!  We miss you immensely here!!! Feel free to visit (not in the form of water 😉)


Until next time!


Love always,

Ema 

Monday, September 19, 2022

2 years 7 months and 2 weeks

Dear Sonzee, 

I realized I missed the monthly anniversary date over a week ago, but figured I would wait until a more "even" date to formally acknowledge the time.  I am unsure if that was a "good" idea or not, but here we are.  For at least a week I have felt this nagging feeling every morning like I am forgetting something.  I felt it a lot right after you left, but then it seemed like it went away, or maybe I just learned to live with it. Maybe after acknowledging the last month and 2 weeks with this letter it will be further removed from my awareness? 

The months on a whole seem to fly by. It is probably how I missed writing to you on the 3rd as it is.  Pair that together with pop-pop's birthday weekend and your brother's hockey tournament and it was the perfect recipe to not realizing/remembering the date.

Historically with my grief this time of year is a challenge.  It is weird considering there are no specific dates around now that really belong to you, but for some reason the summer turning into fall is a complete struggle.  Maybe it is because your last year here during this time was spent with me fighting for someone to listen and believe me about your failing health?! Maybe it is the looking holiday season? This year, we can add that your younger brother is about to age you and it is certainly a recipe for mental disaster. 

This month brings me closer to another fall and season of holidays without you. Another month further away from the last day we were together. It marks a month closer to completing year 3, which means in fewer years than you will soon be gone you will have been dead longer than you were alive.  So many impending dates that make me want to escape my body so I don't have to bother attempting the impossible task of trying to process them.

These monthly dates that pass continue to get worse despite or probably because grief is changing. I wish still that I could see you in my dreams. (I will be very specific so you don't feel the need to bring any flood waters down). We all miss you a lot! I will try to do better to honor the dates in real time. Stay healthy, be well, and have fun!

Until next time.

Love always, 
Ema 

 
The Mighty Contributor

Friday, September 16, 2022

136 weeks and 4 days

Dear Sonzee, 

It has been one of those looonnngg weeks.  Not just because it is 4 days after the Monday that marked the week, but because grief has been a bit heavy.  Last week your sister and I went to New York for the weekend for one of her best friends from camp bat-mitzvah.  I love that we can take her to as many as we have been and will hopefully be able to continue.  Between her trips and your brother's hectic hockey season, I will hardly be home on the weekends for the foreseeable future.  

It was a great trip.  We stayed on the upper west side.  I had forgotten until we went to grab breakfast Friday morning that we had been there before, with you.  I was so annoyed because there was hardly a place to maneuver your wheelchair.  I remember the last time we were at the upper west side with you I wanted to complain to every store manager over the lack of accessibility manhattan has.  Your father wouldn't let me, so I would stew silently over it.  Anyway, it was nice to be in a place you had once been.  

Your absence is constantly felt on these solo trips due to the ease of travel.  

Our return trip home was extra exhausting due to the weather.  During landing, we were diverted to Las Vegas for a bit to refuel and wait it out and then returned back to Phoenix.  Laeya slept and I got a lot of needlepoint done, so that part was very successful.

Work has been nice but exhausting.  

I tried to do a juice cleanse this week, but it didn't work out so well, I think I will just stick with smoothies and eating healthy and not attempt to drink bottles with juiced collard greens.

Your sisters are enrolled in Moshava for next summer and Tzvi's current summer status is on hiatus until we wait to see where he is excepted. He really didn't want to go back to Moshava, and I made him try it for two years, so we are attempting something different, but we shall see what is meant to be. 

Meena has been back at gymnastics for less than 4 weeks and has only been doing it for a little over a year and she got her round-off back handspring. We are unsure when she will start to compete and at what level she will start, could be 2 or 3. My vote is to wait until next year so I have time to wrap my head around two competitive sports in the house. 

The master bathroom shower doors were finally installed!  We are just waiting on the custom laundry room door and then the interior will be complete!  The pavers are going in in the front yard, the end is finally near!

Anyway baby girl.

We miss you and love you lots!

Love always, 
Ema 

The Mighty Contributor

Monday, September 5, 2022

135 weeks

  


Dear Sonzee,

I finally made myself visit you, well it was more the piles of rocks that were acquired during our summer travels sitting on the counter in need of being brought to you.  You finally have those now along with the soap stone characters you get for the bigger milestone dates. 

Today 135 weeks and 2 hours and 30 min ago you were finally at peace, or so we think and hope. In the week that followed your death we honored your first missed birthday with painted rocks.  2 years and 7 months later the inspiration we were given by Mrs. Penny to paint those rocks has spread throughout the cemetery. I will be honest, there was a point on this grief journey I loathed seeing other plots decorated with painted rocks. It made me furious people were painting rocks for their parents or grandparents, they weren’t young, it was MY thing for YOU…a child, UNDER 5…but today, today I walked the rows of the cemetery in 108 degrees and smiled at how YOU in yet another way have made such a positive impact in this current world. Every row has at least one plot with at least one painted rock, some have many more. Some families have painted every rock like us, others just a few. It didn’t make me angry (today). Today in the hot breeze I felt you wrapping yourself around me telling me, “Ema, look…I did this…I can do so much now.”

This past week was a busy one. Your sister has gymnastics 3 days a week now for 8.5 hours total, your brother has hockey for his absurd number of hours, I am working full time and have even been meal prepping and planning for lunches and dinner and the house is JUST ABOUT fully finished! (We are awaiting pavers). 

On Tuesday last week I went to the back to school night for your siblings. There are so many new teachers I felt I should actually go this year, so with some help from Bubbie we made it all work. I listened to all of their teachers talk, but one of them is a newly bereaved parent…I couldn’t help but think to myself how I doubt anyone else was thinking about that fact (if every parent even knew). I couldn’t help but focus on the fact that life goes on and work continues and it’s just how it is.  I realize that’s what I do every day, and I doubt many if any people think about that when they look at me either…it’s just not what happens…it’s weird. (Oh apparently in 2.5+ years I have yet to find a better word besides weird. 

This week I took some of your clothing out of boxes and put them in a new box to ship to someone to make us another quilt. I am torn between two background fabrics, but they both include red and bears. I will decide this week I guess. I also took Mermie and little Mermie out of the box and put them on the shelf above your rifton. It feels more complete…I even put up your name letters, which happened to fit perfectly in the space. As aba said, it’s perfect, minus you not sitting your chair. Which I went on to say, well we couldn’t put her in the corner, and he said, oh please Sonzee would love to be in the corner…

Your brother had his first tournament of the season. They didn’t do as well as everyone had hoped, but now they all know what to focus on for the season. He is playing center this year and he is feeling the weight of his new role, but he is doing great, he just needs to gain confidence. We shall see where his team is placed in the division. 

Poppop turned 70 on Friday and we had a nice Shabbat dinner at the house for him. We did a surprise dinner that Bubbie planned, complete with the huge lot up birthday sign in the front of our yard. I think he enjoyed it! It was nice to have a big Shabbat dinner in the dining room! I am so looking forward to many many more!

Anyway baby girl…you are beyond missed and loved! 

Until next time.

Love always,
Ema 




The Mighty Contributor

Wednesday, August 31, 2022

134 weeks and 1.5 days

Dear Sonzee, 

I am only two days behind schedule this week.  I would say it has less to do with not making time and more to do with avoidance.  I don't know why specifically I go into these phases. I can't decide if there is something specific causing it or if it is just par for the course.

I do know from history that this time of year I tend to find my avoidance more prominent. I can't bring my self to visit you because I hate seeing your name on the stone. I haven't dropped off your rocks, because of the above mentioned and that makes me feel guilty. I haven't made you rocks because they would sit around on the counter (like everything I have waiting to bring you) because of not wanting to go to your grave...so all together, it's just crummy.

Laeya decided she didn't need to go to grief group. Meena wants to go for the candy. I couldn't decide, but was leaning towards not wanting to go anymore because instead of helping, it tends to hold me back. I haven't officially closed us out, because that seems final, so in line with my current theme of avoidance, it fits right in.

This past week Tzvi had his first scrimmage. He missed one due to being sick, one due to shabbat and was able to go on Sunday. His team is 3-0 and it is looking like it'll be a great season.  Tonight is the start of the seeding tournament, and I am so excited for us to be back in hockey season.

Last week was a full week of school for your siblings and work for me. It was exhausting, but I am adjusting my bedtime to go to sleep earlier so waking up so early won't be so tiring. We will see how it ends up working out.

Noam asked to have your book of you and him read to him this week. I always love when he does that. He has been talking about you randomly, which is also nice.

Anyway, I got to go.

Love you lots and miss you more!

Until next time.

Love always, 
Ema
The Mighty Contributor

Thursday, August 25, 2022

132 weeks and 133 weeks and 3 days

Dear Sonzee, 

The last two weeks have felt insanely long while also flying by at the speed of light. 132 weeks brought us to uncle, Hay-Hay's, and baby Isla's house for the last time this summer.  It was so nice being able to see them all so often this summer. Uncle was working from home and Hay-hay had a dentist appointment so I took baby Isla with us to the pool.  I made a comment that if Tzvi were there I would be back to having 5 physical kids...something I honestly miss without you here. Laeya settled into being back home but also continued to spend time with the same girls she had just spent 6 weeks with.  You would think she would have been over the 24/7 with them, but apparently not.  Noam, Meena, and I joined her at their house for a BBQ on Sunday before visiting uncle's. Laeya and I did a lot of shopping (even though she does not even need any more clothing).  We had a lot of nice lunches together and it was nice having her home again. Tzvi and aba 

After we visited uncle it was the start of 133 weeks. That was filled with a lot of packing and the start of our adventure driving back home.  We stopped and got you key chain rocks from each state when we got your siblings' keychains. I didn't really comprehend how many states we actually drove through until I looked at your collection when we got home. We drove to Memphis for Shabbas and to see the Weiner's.  It was a very restful and nice Shabbas, and then we left Sunday morning for home.  It was the longest drive I have ever done in one day, from Memphis to Albuquerque.  It left Monday's drive much shorter and we arrived around 1pm with just a few snafus. 

I will do my best to write to you on Monday!  Missing you lots!
Love you!

Until next time.

Love always, 
Ema

The Mighty Contributor

Tuesday, August 9, 2022

131 weeks

Dear Sonzee, 

Another week has passed.  It is already the 2nd week of August.  The summer is quickly coming to a close.  Today I will pick up Laeya from her 6 weeks of sleep-away camp. I am so excited to see her, I am trying to occupy myself for the next 2 hours before I leave to get her.  It makes me so incredibly broken that there is still nowhere to go to pick you up, and you have been gone for significantly longer. 

This last week we honored your two and a half years of being gone. I hate the word honor, but there is really no other word for it, as I assure you there is no celebration for your absence. 

Aba had a nasty case of food poisoning while he was in Israel, but after 5 days of antibiotics he is starting to feel better, but not 100%. He and Tzvi were delayed leaving Israel due to the missiles, so we got to see them yesterday for a few hours before they flew back to Phoenix. Tzvi (and maybe even aba) had his first experience in a bomb shelter.  I am so thankful I had no idea going to Shabbat what was going on or I would have been a disaster.  I found out in an accidental manner when someone after Shabbat mentioned it in a nonchalant way when I said how their flight was delayed. Tzvi handled it like a champ, but he admitted he was a bit scared.  I wouldn't blame him, that is one life experience I have thankfully been spared thus far. He was calmed down by his cousin sharing in the routineness.  They had 1 min and 30 seconds to get inside once the siren rang.  Some places have only 15-30 seconds. Again, just glad I learned all the details yesterday.

Noam, Meena, and I stayed the night at uncles yesterday, completely unplanned, but it is so nice to love on baby Isla (who by the way is becoming quite the chunker). It has been so nice seeing them so often this summer.  Meena went on a shopping date with Hay-Hay, and she bought her and Laeya a matching Shabbas dress and a new pair of adorable shoes.  

Aba got you a heart rock from Israel! I am so excited to give you all of your new rocks from this summer.  They will be a beautiful addition to the ones you already have.  

Anyway Sonzee bear, I love you and miss you!

Until next time. 

Love always,
Ema

The Mighty Contributor

Wednesday, August 3, 2022

2 years 6 months




Dear Sonzee, 

Today marked 2 years and 6 months since you left me. That is 2.5 years without you.  More than half of your life.  I would ask how, but I am no stranger to the speed that time passes.  I made it through the day without any sudden moments taking my breath away.  That is probably because I didn't want to think about the day until this evening.  In a sense, it was nice to essentially be on my own island without anyone else realizing, acknowledging, or maybe even knowing what today was.  It is definitely a double-edged sword. On one hand, I absolutely hate when people ask me how I am doing on a specific date related to you as if every other day of the year is any different for me. On the other, there is some comfort in knowing that others remember, that the day makes someone take a second to honor, that you are on someone's mind a little bit more today.  There is no winning on this grief journey. Never.

I do not quite understand how time has continued to pass by.  I do not understand how the world didn't stop 2.5 years ago.  For me, my life is surreal, spent balancing a before, during, and after, and not fully embracing the after.  It is filled with a mix of extreme highs and lows as I try to compensate for your loss, but never quite adequately. 

I am truly at a loss.  Two and half years ago you were with me, physically speaking. I know mentally you were out of your body 36 hours before.  I have been listening to an audible book about grieving a child, and the story recounts the exact days leading up to their daughter's death and the day of.  It still fascinates me how many details are remembered surrounding the deaths of a child.  I was thinking while I listened to the story how amazing it was this mother could recount the weeks prior with such perfection without knowing her daughter was going to die.  Then I realized, I didn't know how long you would have left to live and I too could recount the last weeks of your life with painful accuracy.  Some moments in life just become permanent.  Thankfully and not.

I feel like I have learned so little and so much in the two and half years since you left me.  I have definitely changed in the time as well, for better and worse. Two and half years ago seems like a dream and a nightmare all mushed into one block of time.  I still manage to wake up every day.  I still manage to put one foot in front of the other.  I still manage to breathe.  I still don't understand how.

In two and half years I have certainly cycled through all of the stages of grief and then some.  I feel like there should be a different term to describe them because if I could describe them visually, it would be one of those clown mazes, complete with mirrors, shaking, steps, strobe lights, and all of the chaos. If I thought at one point the stages would ever be accomplished I wouldn't be doing grief any justice.  This is one carnival experience that won't ever be ending.  

I wish I knew what you have been up to over these last two and half years. You accomplished a decent amount in your two and half years on earth but never hit the typical milestones.  Have you done so?  Did someone put a sticker on your shirt like I had ready for you and then take a picture with you wearing it?  Have you surpassed all of the typical milestones and completed ones I wouldn't even be able to dream of?  Do they have a sticker for flying?  Are there levels to complete like at swim? Have you earned a sticker for visiting me? Do they give you extra points for your mother not realizing it was even accomplished?  Maybe you could ask to have a sticker added for visiting your mother in her dreams?  I promise I would bring you a rock with that painted on it. 

Do you go to school?  What grade are you in? How does the schooling even work where you are?  Where are you even exactly? Is it one specific place or do you travel all around?  Who do you live with?  Are they people I know?  Do you have a lot of friends? Do you have sleepovers and parties together?  What is your favorite thing to do during the day?  What are your favorite foods? Do you still love to swim and the color red?  What is your favorite music to listen to? What music do you not like? Is it jazz like me or country music like aba?  Can you ride a bike? Have you ever been skiing or ice skating? Aba, I am sure would love to know if you like hockey. 

There is so much I don't know about you and what you are up to.  It literally sucks the air out of my lungs.  Your brother is soon to be the age you never turned, he is out of my sight for 8 hours a day, and I get pictures of what he is up to and I know where I can find him.  I know nothing about you.  It is horrible.  I hope that is one-sided. I hope you are not experiencing the same panic wondering what we are doing here. I hope you are in the know.

My heart is still in pieces two and half years later.  Time has not healed anything.  Grief isn't any better, and it certainly is not over.  The thought of another two and half years passing without you here makes me nauseous, despite knowing that will be my future. Please come and visit me in my dreams, it's been too many years since I have seen your face!  

I love you beyond words Sonzee bear!

Until next time.

Love always, 
Ema




The Mighty Contributor

Monday, August 1, 2022

130 weeks

Dear Sonzee,

130 Mondays have passed. The weeks with 0's at the end seem to hit the hardest.  They for some reason represent an infinite amount of time.  130 weeks.  130 Mondays since you last laid in my lap.  130 Mondays since I last felt your soft skin and gave you a kiss.  

I often wonder who is taking over that role without me being there. I pray it is someone and you haven't been void of receiving cuddles and kisses from someone, but I am also envious of whoever is fortunate enough to be with you. 

130 Mondays since you were driven away from our home for the last time. I cannot seem to remember your siblings' correct names or why I walked into a room, but I can remember 130 Mondays ago like it happened yesterday. I will forever be thankful for as long as that is the case.  (Although I cannot say the same for the 48 hours before that).

This last week all the related service providers and teachers started back at FBC.  I was able to pop in virtually for a meeting on Friday and it was nice to see everyone.  I am very excited about the new school year (although I will be starting later than everyone else).  This week I purchased your siblings' school supplies so when we get back they will be ready to go to school.  

I often times find myself forgetting how old you would be and what grade you would be going into.  Hard to even fathom you as a 7-year-old 2nd grader.  Forever in my mind, you are 4 and in preschool.  The same age as your baby brother.  

This weekend I took Meena and Noam to the trampoline park here.  There was a Jewish special needs camp with a little girl who reminded me so much of you.  She was being held in the lap of someone while on the trampoline.  I stared.  I wanted to go over and ask about her, but I had shoes on, and I couldn't think of anything besides, "Hi, she reminds me of my dead daughter, what is her diagnosis?", so I just started some more.  While my mind created various scenarios of how the counselors were probably thinking how rude I was to stare, and how if they were to say something I would actually be able to bring you up, the tears filled my eyes.  So much so that Meena caught on and asked me if I was okay, I managed to give a smile and say yes, but my throat caught when I went to say how the little girl reminded me of you. It took a good swallow for me to say it to her.  I tried to get her to go over and ask the counselor about her, but she didn't want to and being how I wasn't going, it would have been pretty hypocritical to make her.

Anyway baby girl...I wish you were here (although the walk up the hill would be quite intense pushing you in your wheelchair). I wish you would come and visit me!  I wish I knew what you have been up to for the last 130 Mondays. I miss you so much!

Until next time.

Love always, 
Ema

The Mighty Contributor

Wednesday, July 27, 2022

129 weeks and 2 days

Dear Sonzee, 

This last week was the last week that aba was in vacation village for the summer.  He and Tzvi will spend the next 10 days in Israel and then go back to Phoenix so Tzvi can get back on the ice. The week was filled with a lot of yummy lunches and dinners.  We also got to see Laeya on Sunday.  It was amazing to give her a hug and kiss, and then sad to send her back to camp, but, she is happy so that is what matters.  It is amazing after just a month of her being gone how I felt reuniting with her.  It makes me wonder how it will be to see you, again, hopefully, one day. 

This last week I had another panic attack. It made it the 2nd one over the last couple of weeks and the first ones I have experienced in the previous 6 months or so.  I am pretty sure the culprit was grief, but I cannot confirm or deny that guess.  

Someone who had not seen us since the last summer you were here asked me excitedly about you.  I paused for a moment and then told them you are no longer with us. I felt so sad for them.  Me, I have known you have been gone for 2 years 5 months, and 24 days.  They just found out this information.  It breaks my heart to have to break someone else's.  It was in the middle of the night after this conversation that I had my panic attack. I find the ones where they wake me from my sleep with the squeezing headache to be the worst type.  Especially when there are no dreams to accompany them.  It took me a good 3 days to finally relax, but I can tell even days later that anything could send me back.

Bubbie, pop-pop, and Max came to visit us last shabbos. Maxi is the cutest dog and I bet he would have snuggled up against you as he tried to chew your feeding tubes and cords.  It would have been a blast trying to keep him off of you.  It was a very nice weekend and the weather was so beautiful we spent so much of it outside on the deck looking at the lake.

On Monday we picked up Meena and Tzvi from sleep-away camp. Meena absolutely loved it, while Tzvi was his typical "I am never going back there" self. That conversation ended with yes he will be and he can decide to have fun during it or not, his choice.  He made some new friends, they even came to celebrate his birthday with us at the water park before he left for Israel.  That made my heart happy.

Anyway baby girl.  As always, I miss you so very much! Be safe, and keep having fun!

Until next time. 

Love always, 
Ema

The Mighty Contributor

Sunday, July 24, 2022

learning...

7 songs have played on my "Sonzee blogging" playlist.  I have written words and erased the majority of them.  The tears, they want to come, but I keep holding them back for some reason.  I know I shouldn't.  Deep down I know it's the reason I have experienced two panic attacks within the last two weeks.  The ones that wake you from your sleep and bring on a headache that feels like someone is squeezing your head with a very tiny rubber band.  The ones that take at least 24-48 hours to fully recover from, despite attempting to will the cortisol levels in your body to readjust themselves.  Yet despite those best efforts, what's more likely to happen is for the levels to rise again because something (simple) happened that you weren't expecting, like someone speaking when you have your back turned. 

Grief.

It really never goes away. Or maybe it takes longer than 2 years 5 months and 21 days?  The whole learning to live with it concept is quite honestly horrible, and my ability with it fluctuates.  I (naively) thought that maybe I was getting ahold of it.  I thought maybe with life moving forward, maybe with the time passing, maybe with parts seeming normal that I was starting to "learn to live with it".  But then it feels like utter chaos as I try to combat the feeling of being completely mentally unstable.  One minute I can feel like I have this whole learning to live with grief concept mastered and the next I am taken out at my knees. I want to imagine that the pit in my chest and the tears in my eyes will one day permanently pause if I was actually accomplishing any ability to learn to live with it.  Maybe "learning to live with it" is simply acknowledging its always-ever presence?  Maybe accepting the pit and the tears are what I need to do to learn?

I'd rather not.

12 songs have played. I'll allow the tears...for now.  I will admit this journey is complicated, that there isn't a one size fits all.  Maybe what I have learned in 2 years is that grief is hard to live with. I will give myself grace while I sit outside and let the wind wrap itself around me, pretending it is her coming to give me a hug because G-d knows I could surely use one of those from her. 


The Mighty Contributor

Monday, July 18, 2022

127 & 128 weeks

Dear Sonzee, 

I had every intention of writing to you last week, but time slipped away. I feel like 12 days ago was so long ago and I cannot really remember all that occurred.  I am sure it was similar to the week before, just shopping with Mrs. Malka and eating.  Eating has become an activity, one that I am going to eventually regret, and one that will undoubtedly lead to me participating in that forbidden word exercise.  

Since I cannot remember much of week 127 I will fast forward (or maybe it is rewind?) to week 128.

Week 128 led aba and me to New York City.  Savta came to watch Noam (he wasn't so keen on us leaving him, especially without your other siblings, so he spent all the morning hysterically crying for me).  Since our return on Friday, he has not wanted to be away from me, but aba and I did sneak out again for dinner and once savta reiterated we were not staying away he calmed down.  I wonder in his little 4-year-old mind if the fact that you left and never came back is what made things difficult?  That and your other siblings are also away.  I won't pretend to know if either of those are the cause.

We went to New York City to spend time celebrating aba turning 40 and to hang out with Harper's parents.  It is always an amazing time when the four of us get together.  Tons of laughter, tons of food, and tons of fun.  There is always something so I don't know the word, comforting? to spending time with another couple who has lived our lives for close to the same amount of time and having it end similarly.  We can laugh until the tears flow and then have the tears flow a second later over the fact that our girls are gone.  We can cry during a broadway show that is not even remotely related to you or Harper, but just because something in our minds decided to relate it to you one of you, and then go about our day as if life is normal.  In a sense, it is because this is our new normal, it is our life, lifeaftercdkl5.

I leave these gatherings ready for the next one, planning already underway for our next reunion and not wanting to return to the other part of normal, where people can't possibly understand (even if they try). To a world where the tears and jokes have to be more closely monitored so as not to make others uncomfortable.  There is 70% of me who doesn't really care about making others feel uncomfortable or the situation awkward because it is my life, but the 30% of me that does tends to win.

I ordered new paint markers to make you some rocks, they came during week 127.  I have to admit I haven't painted any in a while, so on my agenda this week is doing that.  

I cannot believe tomorrow a month has already gone by since we left Phoenix.  How does time fly by so quickly?  Another month until we leave to head back. Wish you would come and visit me here in NY.

Missing you a lot!

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, July 5, 2022

126 weeks and 1 day

Dear Sonzee, 

Today is July 5. Two days after another month without you and one day after another Monday.  This week seemed to go by quicker, but it was also tougher in terms of emotions. This week, I found myself having a few of those "smack me in the face" moments of if you were here.  If you were here things would be so much different, so much so I cannot really make out an image of what it would actually look like. I have tried to imagine what if you were with us in this lake house with 12 stairs up to the top.  I have tried to imagine what if I had to push you in your wheelchair up the hill to the Husarsky's or to the camp house multiple times a day.  I have tried to imagine what if you were here for the summer with Noam.  Would you have ever been accepted into Camp HASC?  Would you have ever been considered "less complex"?  Would I have finally convinced Nurse Paige to spend the summer here with us and have her take you to camp?

This week we drove to uncle, Hay-Hay, and baby Isla again.  Would we have done that twice in one week if you were still here?  Would I have been able to be on newborn baby night duty if you were here? Miss Malka and I have done a couple of runs to different stores, but otherwise, I have been kicking my feet up on the sofa and watching Disney nature videos.  I even took a nap, during the day.  Sure there are a lot of things I would like to be getting done while I have the time, but I am starting to master this whole relaxation thing and it is probably better for me than crossing items off of a to-do list that isn't time-sensitive.

This week we received our first letter from camp. Surprisingly it was from Tzviki and he even said "camp is good".  I feel so relieved reading that considering it took until today for a candid shot to catch him smiling.  I am convinced he purposely doesn't smile and ignores the camera on purpose just to stress me out.  Thankfully the photographer caught three of him smiling and happy. I also sent him a love note email explaining I wouldn't refill his canteen money if I didn't see a smile, tonight it has been given a boost. Laeya lost her glasses in the camp lake.  Well to be fair, she gave them to the lifeguard who placed them on the dock and they weren't there when Laeya went to get them back.  Poor girl cannot see without them, hopefully, her new pairs arrive tomorrow.  (She of course left her backup pair in Phoenix).  Meena's camp mom sent me a request for more skirts, so I will either be driving there in the morning to drop them off or sending them UPS, I haven't decided just yet.  Otherwise, the two of them have been smiling ear to ear every day. 

On Sunday we visited a new farm, it was actually called a homestead.  They had so many activities and so many adorable animals.  Noam was obsessed with the baby goats and ducks (as were aba and I).  They had wagons and little kid tractors and cars sitting around to be used.  The minute Noam grabbed a wagon my heart stopped.  It came out of nowhere, the reality that you should have been there with us.  He pulled the wagon around a bit before he found a kid-sized John Deer and then left us to go and play.  My eyes caught sight of a hammock perfectly located amongst the trees just blowing in the breeze.  It called me over and I laid on it for a bit.  For one of the first times on this grief journey, I let the tears just fall down my face only to wipe them as they reached my chin.  I repeated in my head that I should just let the grief wash over me and reminded myself that it is better to grieve at the moment and not to suck it up and pretend that I was okay.  I told myself what so many others have said to me, it is easier to be in the moment, so on the 2-year and 5-month anniversary of you being gone, I took the advice.  I am unsure if it made anything easier, but it did make me feel better to let it out vs keep it in.  I have kept it in enough to know it wouldn't have stayed in for much longer and so on the spot I am sure you would have swung with a smirk on your face, head tilted towards the sky leaning into the breeze, I let myself be wrapped up in your amazing breezes and allowed the tears to fall. 

Anyway baby girl.  The tears I am sure will continue and I will be better about allowing them their right to do so.  I hope you come and visit me!  I hope you are having an amazing time wherever you are.  I hope you are flying and free!

Until next time.

Love always, 
Ema


The Mighty Contributor

Sunday, July 3, 2022

2 years 5 months


Dear Sonzee,

How did I miss a month? I am so confused. I went to count the months and realized there was no post on June 3, but I’m failing to understand how I missed writing a post. Maybe I combined it with a weekly post and I don’t remember? I know the 3rd of June was busy with moving into the new house, and then Shavuot happened…but I still should’ve written you a letter. 

Today another month begins without you. That has happened 52 other times as well. It doesn’t get easier, just more different. Sometimes different is horrible and sometimes it just is.  Either way it’s still difficult to explain in a language people can understand.

This month was lengthy and filled with new challenges, like trying to find the perfect spots in the new house for all of your things and having to always look at your stuff even if I’d prefer for it all to be hidden at times. It was also during this month that for the first year since we have come to NY that we are in a different house in vacation village, a place you never were.  It was also during this month that I met your new cousin, someone who won’t ever meet you and will only know you from pictures and stories she will be told. 

This month brought on a lot of grief randomly, out of nowhere, but it was also the first month that I allowed myself to let it wash over me and wasn’t so quick to breathe it away. Instead of pretending I was okay, it was the first month I allowed the tears to fall out of my eyes and down my face before I rushed to wipe them away…I would say that is one way grief is different. I feel the pain, it sucks, it’s horrible, but it’s never going to go away so I might as well embrace it as it comes…or at least try…

This month brought another loss to the CDKL5 community, but at the same time it was another month I found myself drifting further from that life.  I am accepting that for my mental health I can’t be part of that world, it’s too much…but that’s okay. 

This month like I mentioned was tough, but knowing you’ve had another month of freedom makes it alright.

Until next time my love!

Love always,
Ema 

Wednesday, June 29, 2022

125 weeks and 2.5 days

Dear Sonzee, 

I think I have mentioned before that some weeks fly by and others seem like they slowly drag by.  It isn't in the physical day-to-day sense, but more from the mental perspective.  I wrote you a week ago, but honestly, it feels like it has been so much longer.  If I had to assign a reason I am pretty sure it has to do with what the week was filled with.  This last week was so physically draining with our drive from Phoenix to New York and then getting set up in the house paired with visiting uncle, Hay-Hay, and your new cousin, and then the start of camps for your siblings.

During our drive to NY, we went into gas stations that had key chains.  While your siblings grabbed the ones they wanted I noticed a heart-shaped rock with the state name, perfection.  I knew this was perfect for you.  We didn't stop in every state, but we ended up with three states.  My new activity will be collecting heart-shaped rocks for you with every state on them!

We arrived in our home for the summer a week ago.  It was really an amazing trip, filled with a spontaneous stop in Casey, Illinois, where we saw some amazingly huge items (think the world's largest rocking chair, mailbox, taco, key, golf tee, etc.)

I spent Wednesday through Friday getting the house set up and buying all the things we needed for the house and last-minute items for your siblings for camp. On Friday was aba's birthday!  He turned 40!  Insane that he is now in his 40s and I am on his tail.  He was still in Arizona with Tzvi, so Morah Zupnick helped pull off some birthday specialness and I had cardmyyard attack the front yard with a huge sign (hahaha). 

On Sunday was meet baby Isla day!  It was amazing!  She is so adorable.  One of your siblings mentioned how you won't get to meet her and asked how she will know about you.  I said we would tell her.  I honestly hadn't given it that much thought because I didn't anticipate that she wouldn't learn about you or know you, but I have to admit it does suck we won't ever have a complete cousin picture.  There will always be you missing, and that will always be painful to see.  I stayed up with her and took night duty and she is such an amazing first baby, so chill.  We warned uncle the next one won't be the same (hehe). I couldn't get enough snuggles with her.  (so obviously I will be going back a lot this summer)

I went to get aba and Tzviki from the airport after the all-nighter and then we went back to uncle and Hay-Hay's. Eventually, we drove back up to VV and it was the last night before camp.  Yesterday we dropped off Noam at day camp and then drove to PA to drop off the elders.  I have been stalking their pictures since they left.  It is always a challenge for me to remind myself that it is just camp and (g-d willingly) they will be coming home at the end of the summer.  I talk myself down a lot when the initial panic begins to pop in and overall I am doing okay.  It is just hard.  You being gone is hard.  You never coming back is harder. The reality when it punches me is the hardest.  The permanence is like a punch to the gut that removes all the air from my lungs. 

It still sucks.

Anyway, baby girl, I will write more about VV soon! Missing you and loving you!

Until next time.

Love always, 
Ema



The Mighty Contributor

Tuesday, June 21, 2022

124 weeks and 1 day


Dear Sonzee,

This last week was filled with putting the last of the items away in the house and unpacking boxes.  We seem to have misplaced Mermie, but Aba assures me we put it somewhere safe - so we have to just remember where that may be.

Mrs. Penny and Seth came for a visit while Lily was in astronomy camp.  I always love their visits! They came for two days and slept over one night. The bathrooms are still ALMOST finished - this time by Sunday when aba and Tzvi leave they will be completed (we hope).

We finally celebrated Meena’s birthday with a pottery party, better late than never right?!

The week was filled with random pop ins of people and  I thoroughly enjoyed making multiple batches of cold brew and various teas for everyone. I LOVE our new house location! 

Shabbas had lots of friends over as well for all of us. I think we are all loving it. 

I spent last week finishing packing for camp and NY. Aba and I packed the car Friday and Saturday night. By Sunday we were ready to head on our way. The girls, Noam, and I met aba and Tzvi by you for a Father’s Day picture and then we left on our journey.

Tonight ends say 3 and tomorrow we will be in NY. It has been a fun and actually easy drive.  We picked up keychains for you every time we got for your siblings. They have states written on heart rocks and it’s so perfect for you!

Anyway baby girl. As always we miss and love you lots!!

Until next time.

Love always,
Ema 


The Mighty Contributor

Monday, June 13, 2022

122 and 123 weeks

Dear Sonzee, 

I begin with what seems to be my weekly apology for being late or missing a week.  After I finally located my computer at the end of last week I figured I might as well wait for today to combine the last two weeks.  Most of which has been filled with moving out of the apartment and into our new house. 

I am thrilled to be in a house.  Apartment living is just not for me.  I actually heard the music from wherever it was coming from into the boys' room in the apartment in Tzvi's room the first night I tucked him in.  It took me two days to stop the make-believe music.  Everyone has been settling in nicely.  Aba and I spent the last two weeks sleeping on either a couch or a trundle in each of your siblings' rooms because our room was a hot mess.  We finally put up all of our dressers and closet organizers, despite the bathroom still in full construction mode.  Neither ours nor Noam's bathrooms are completed yet, but will hopefully be by the end of this week. (I will say the couch is amazingly comfortable so I didn't complain)

We are working on each of your siblings doing their laundry since they now all have hampers they are hoarding their clothing in.  In the apartment, I just kept the washing machine open and they dumped their clothing inside.  While extremely efficient if I missed a day there was a backup and nagging over needing clothing, so to offset the complaints everyone can just be responsible for their own laundering.  I have to say, so far your 3 older siblings have been pretty awesome, and I switch their loads and tell them when they are ready for folding and putting away.  They have learned the detergents and items that go into the cycles. 

Your areas have been set up, but I am still behind on putting up all of the pictures and new frames. I will probably have to push things off until we get back from summer because as of today camp packing is strictly underway. 

The last two weeks have been mainly ok in terms of settling in a house you never lived in.  We have set up your items strategically around the house but in an organic manner.  The idea is that you are everywhere, and we are doing our best to ensure that is the case.  It was so cute, as I walked by Noam's room this week he was putting out your picture on his dresser. I put your feeding pole and one of your bags hanging from it in the family room.  Your blankets are in a basket side table with pictures on top, but available for me to sit on the couch and snuggle with. (It almost takes me back to the hospital days since they are the ones I would get on the care cart, minus the fact that the couch here is so much more comfortable than the PCH benches or chairs).  I put your oxygen machine next to those side tables.  Your artwork is slowly making it up on the walls, and all the gifts of trees given in your honor and memory are in the kitchen, along with the picture that I took of your grave when a heart somehow appeared reflected in your rock basket when there was nothing around to do that. Your Rifton chair sits with the epilepsy bear PCH child life made for your siblings so they wouldn't be scared to see you with the EEG hat on, and we put some of your Sonzee items in that area. That kicking Daniel Tiger piano that you used to love and hit until the frog sang is tied to the footrest, and I put in new batteries so I could hear the frog sound if I am in the mood for it.

Your siblings have been swimming up a storm in the pool.  It was a major pull to this house, especially since it came with a diving board as well.  A part of me wishes we had your swim spa, the other part reminds me I couldn't bring myself to go inside it without you, and hadn't since you died. 

The downside of combining weeks is I forget a lot of the details I would have told you, hopefully, I will do better.

Anyway baby girl. I miss you lots and wish I could see you and peak in on whatever you are up to. Come and visit and let me know if you approve of where I put all of your things!

Until next time.

Love always, 
Ema

The Mighty Contributor