Friday, July 31, 2020

Difficult roads...

Dear Sonzee, 

Another 31 days is wrapping up meaning another month is coming to an end.  This one, in particular, was our most eventful since you left us. We finally closed on the house 9 days ago, Bear Pines is slowly coming together.  The most incredible part is seeing my vision become reality.  Aba and I joked last night this is a place we would love to airbnb, and we hope all who visit here will feel the same way.  I added touches inspired by you all throughout.  Currently, I am upstairs on the outside porch writing this letter while sitting at a bistro set placed on top of a rug that is beige with a red design all over it, and drinking my coffee from the ceramic cup that has the red ring around the top.  They are honestly pretty crummy substitutes for you, but since they are the best I get, they are absolutely perfect.

This past week finished off multiple meetings for the new school year at FBC.  I am going back to West Valley for the 3rd year and took the two classrooms at East Valley.  The decision was made for me to not go back into central, and it was the correct one confirmed the second I looked at classroom assignments and didn't realize I was holding my breath until I saw Ms. Susan and Ms. Erin in the classrooms that were once mine.  I know I will miss seeing the faces of everyone who works on that campus, but I don't think I could walk the same halls you once did in your gait trainer, or have the constant reminder of your absence seeing the classroom you most probably would have been in.  I know the staff misses you greatly, they check in with me often and have made that very clear.  They always have been the best.

Yesterday we saw the initial mockup of your headstone, it turned out beautiful, but needs a couple of small fixes.  I am excited to see the final draft and then one day in the next few months it'll just show up.  I anticipate that day will be filled with mixed emotions.  Tomorrow begins a new month that will present us with some firsts. On Monday it is going to be a double whammy as it would have been your first day of school, Kindergarten no less, and it also marks 6 months since you have been gone.  Tuesday I am slated to do a live zoom as a Chabad FSU alumnus about your story, and I am really nervous about that.  

While today marks the final day of another month of 2020 you missed out on, it was also filled with new beginnings.  It breaks my heart that you aren't here to share them with us, but I know wherever you are, it is better for you.  So like this quote that now hangs in the coffee nook of Bear Pines says, 

Love always, 
Ema

The Mighty Contributor

Monday, July 27, 2020

25 Weeks

Dear Sonzee,

I simply cannot believe we are just one week away from you being gone for 6 full months.  It seems as if an entire lifetime has occurred during that time, one where you aren't physically present in but yet you somehow manage to fill all the space around me. 

During this last week, we finally closed and moved into Bear Pines.  We took a family picture on the front porch and we held your place with one of your Sonzee Bears.  It isn't the same, but at least there is a place holder.  The house is slowly coming together, but I feel like it will never be complete.  It took me two full days before we got the front porch set up perfectly with patio furniture, the new address sign, and your windchime.  I finally drank my first cup of coffee sitting outside on Saturday morning.  My heart misses you terribly, but when I am outside I just think of that quote from "A walk to remember"; "our love is like the wind, I can't see it, but I know it's there" and every time, I start to hear the rustling of the leaves in the tall trees and there is an extra gust of wind that surrounds me. 

This whole moving forward thing isn't getting any easier, but it is definitely getting different.  We celebrated Tzviki's birthday yesterday.  I made him a hockey cake and aba and I continued to build furniture and organize.  Your siblings spent the day both inside and outside.  Noam is roaming around like the king that he is, and getting bossier if you can even imagine that.  I want to do something special to honor your 6 months, and while talking to Auntie A today, she helped me figure it out, so now I just hope it gets delivered in time for me to bring it to you next week.

Today begins on-line meetings for the new school year at FBC.  My mind is still a mess about everything.  Right now it is scheduled to start virtually in a week, but if it changes to in-person in 3 weeks I cannot figure out if I would want to go in?  Your siblings' school has yet to determine their course of action either, and I am also torn on whether to send them.  Everyone likes to point out children dying from covid19 is rare, to which I reply that you were rare and statistically about .002%.  Someone has to be the statistic and you were one, so they really mean nothing to me.  I am really just hoping everything stays virtual, but that is selfish ema talking.

I hope you are continuing to play with your friends and make new ones and do whatever it is that you want.  Remember you are loved and missed greatly!  Stay healthy and be well.

Love always,
Ema

The Mighty Contributor

Wednesday, July 22, 2020

Control


The last few days I have felt similar to a prepubescent hormonal girl who feels like her world is falling apart and that no one understands her.  While she has no idea why she is feeling the way she is, I know for me, the culprit is grief, which is now the replacement for the previous 5 letter string of characters that wrecked so much havoc on our lives.  Unfortunately, and similar to CDKL5, knowing that my grief is "the why" doesn't at all help with gaining any sort of reprieve from it or any control over it. It is so hard.

I have read enough books about grief and talked to enough fellow grievers to know the best course of action is to just sit with the grief, but honestly, it isn't as easy as it sounds.  Sitting with grief means there has to be a relinquishing of what little control I have fooled myself into thinking I have left. It means allowing myself to feel these tumultuous waves of pain, of anger, of sadness, of I don't even know what.  It means I have to allow myself to realize all of my feelings are normal, even the ones that I am deeming irrational because they all do have a purpose and because they are my feelings, they are all valid. 

I feel like I have been reluctantly dragged to a get-together and now I have to make the best of it by striking up a conversation with someone in the room.  It is awkward, the desire to be there is null and there is the now added component of pretending to be interested in small talk.  The difference between grief and attending the get together is that more often than not, you can look back on attending the event and realize it wasn't so bad after all.  When it comes to grief, there is no looking back on it, there is no escape from it, and there is no excitement over allowing it into your life.  The only positive that comes from sitting with grief is that each time you sit with it, you have managed to successfully survive another tsunami, but that is hardly a consolation when you know the cycle is neverending. 

The Mighty Contributor

Monday, July 20, 2020

24 weeks

Dear Sonzee,

24 weeks. I don't get it.  Time has never appeared to pass by so quickly, even your time here on earth seems like it went by not as fast.  It is just the time with you actually here seems to be getting harder and harder to see.  I feel as if I am sitting on a plane and watching you shrink as the plane moves higher and higher...I fear that you will soon be completely out of my sight.  That thought is scary and suffocating and yet in some ways, it is unavoidable.

Last Wednesday night we went to a drive-in movie event put on by Hospice of the Valley, they played the Disney movie, Onward.  We already watched that accidentally near the beginning of quarantine when Disney did an early release.  I had heard people say it was amazing, so I just pressed play without even reading the synopsis.  It was a parenting fail in terms of Laeya, and I definitely was not prepared for it.  This round, it was aba who had not seen it, but he at least knew what it was about.  I think it was toughest for him due to Saba.  Overall, despite it not being one of my favorite Disney movies, I think it provided a good storyline for us.  Your sisters brought their Sonzee bears all dressed up in your newborn outfits along with your feeding bags and Laeya even threw in your phone (that we haven't turned on since it died). 

As a whole, I am still feeling lost.  I know it has become apparent to your siblings because Laeya mentioned how I don't spend all my time giving you meds, taking care of you, or working on something related to your care and I just sit at my desk "bored".  It is an accurate statement.  I have all this time, and I don't know what to really do with it.  I try filling the void with different things every day, but everything pales in comparison to just having you here.  Yet, as much as this is horribly painful, I wouldn't even ask you to come back so you could be the one having to suffer.

The one thing everyone seems in agreement with here is they are loving my "grief directed cooking".  I have been doing my best to make different "fancy" dinners, and since I do have the time now, I find easy recipes and just dive right in.  The majority of them have been huge hits, the ones that weren't I knew I was gambling on from the start, but I made them eat it anyway and just bribed them with some dessert.

This week is already the last week of the extended school year, I can't believe it was four weeks long.  FBC's school year is planning on virtually starting two weeks from today.  I feel like summer shouldn't be over yet, without being in NY it doesn't even seem like it ever began.  I hope wherever you are, you are having fun dancing around and doing everything to your heart's content. You are greatly missed and always loved.

Love always,
Ema

The Mighty Contributor

Friday, July 17, 2020

"Normal"

When Sonzee died covid19 was just beginning to infiltrate the United States.  Besides my mother mentioning in passing there was a bad virus in China, I honestly didn't give it a second thought.  By the time we celebrated her 30 days after she passed, restrictions were beginning to be put in place.  I never officially went back to work in the true sense of the word, because by the time I decided I might give it a try, schools closed and life went virtual (inner sigh of relief).  It was an adjustment on many levels being home with the kids and them being in school online, but ultimately, it allowed for a complete change of pace, so it removed a lot of the new I would have had to face post-Sonzee.

In April I couldn't even imagine that summer camps would not open and that we would not be returning to NY like we typically have.  I was a little skeptical about us going away for 3 months, but Sam and I always said after Sonzee died we would need a complete change, so I was looking forward to it nonetheless.  By early May it was clear that our trip to Israel was not going to be happening and by the 2nd week of June, we knew our summer was going to take place in Arizona.  As disappointing as that initially sounded, I felt another sigh of relief.  Life has essentially morphed its way into this entirely new adventure.  One filled with being with my children 24/7, working off a computer in Sonzee's bedroom, trying to keep the kids from fighting all day, and swimming in this vast ocean of grief.  While there is a part of me that wants my children's lives to return to normal, that would also mean my life would have to resemble some sort of normal as well. 

Normal would now involve a school pick-up and drop-off at only one school.  Normal would now mean that I return to work in a school where I will no longer also be a parent of a child who attends.  Normal would now mean that I will be driving around multiple times a day without Nurse Paige in the passenger seat.  Normal means no random hospitalizations or doctors' appointments occurring that cause scheduling conflicts or interfere with playdates.  Normal means life would actually be moving forward.  For my work, the tentative anticipatory date of normal is August 17, which is a month from today.  There is something so terrifying, painful, and sad about a countdown that would officially represent the beginning of life without Sonzee, and from where I am sitting, I am just not ready.

The Mighty Contributor

Wednesday, July 15, 2020

What I wish I knew before I became THE grieving mom

Within the first few weeks after Sonzee passed away I wanted to apologize to all the bereaved moms that were checking in on me for me not being there in the same manner after their child had passed.  My only comparison is joining a sorority and after you receive your bid and you are swarmed by this large mass of people who are there to guide you, support you, and love you in a way you can't even understand at that moment.  There is something about joining this type of club that causes others and your relationship with others who aren't grieving their child to change.  In my experience it is no fault to anyone specifically, it is mainly due to the overall awkwardness of the situation, the insecurities and potential fear of saying the wrong thing, not wanting to say anything that might be a trigger, and simply just being unsure of what to say at all.  I, myself, 100% guilty of being that person and so last night after I received a text, I decided to create a list of some of the things I wish I knew before I became THE grieving mom. 

**I will add that grief is extremely personal and a never-ending journey, therefore what "I wish I knew before" might not be what all others who are grieving feel.  Please use this as a reference, but understand that grief is not black and white.**

1. Don't be so afraid of saying something wrong, that you say nothing.  You may fumble your words or stumble with your thoughts.  You may have written the text 5 times already, erasing it every time because it just doesn't feel right.  You have absolutely no idea what will happen after the words leave your mouth so you decide to just keep your thoughts to yourself.  Nothing you think you might say will make a difference anyway, so the days pass and you say nothing.  Time goes on and now you feel like it's too late to reach out, so you continue to say nothing.  Please reach out.  Send an emoji if you can't find the right words.  Don't be afraid.  You may not receive a response immediately, please don't take it personally.  The fact that you took the step to show you care means more than you'll ever know.

2. Don't be afraid of saying something that will be a triggerLife after the loss of a child IS one big gigantic trigger.  Whether you say something about a specific topic or not, I assure you our child is always on our mind, 100% of the time.  Your words aren't a reminder, because our minds are on a looped reel regardless.  By bringing up a potential trigger you are allowing us to share our experiences of our child and by letting us know that you are thinking of him/her we know he/she hasn't been forgotten. 

3. Don't be afraid to ask me to relive an experience.  You know there are some situations that you need first-hand experience knowledge, and you want to reach out to the bereaved mom, but you worry about bringing it up out of fear that she doesn't want to discuss it.  Sometimes that might be the case.  Give her the right of first refusal.  For me, the life of a special needs parent has always been about sharing our experiences.  I like many other special needs parents, are well versed in many areas of medical complexities and just because our child is gone doesn't mean we have lost all of those years of knowledge and experiences.  Sometimes we just need an excuse to talk about our child.  Sometimes, even if it brings back negative memories we still would rather relive it than fear declining and never being asked to share again.

4. Keep reaching out.  Friendships are of course reciprocal, but after losing a child a lot of us are barely hanging on.  There are days filled with tears, anger, and various other uncontrollable emotions.  Sometimes we want to talk until you regret reaching out in the first place, but other times your efforts might feel unnoticed or ignored, but I assure you they are noted and appreciated so don't stop in your efforts.

5. Grief is messy and ugly.  There is nothing organized about grief.  There is no way to put a positive spin on burying your child.  Your role is never to be able to rid us of the pain, the emotions, the challenges, or the complete chaos we have found ourselves in.  You cannot change the situation, you cannot make it alright.  When we are sad, cry along with us and when we laugh, know for that moment we are genuinely happy.  When we are angry, allow us to feel that anger deeply.  Never share platitudes that negate what we are experiencing.  Grief is individual.  Grief is hard.  Grief is at times extremely lonely and suffocating.  Grief is simply our new way of continuing on our parenting journey.  Your role is simply to love us and support us along the way and trust me, we need you.

The Mighty Contributor

Monday, July 13, 2020

23 weeks

Dear Sonzee Bear,

My groundhog week begins again.  It will be 23 weeks this afternoon at 1:08pm AZ time.  This week has been filled with much of the same with a slight twist of additional tears.  The further away our last time together becomes, the harder it is for me to try and understand everything related to your life and your death.  In just 5 days it will be 6 months from the day aba called hospice and had you admitted.  I have spent much of these last 6 months analyzing the 6 months prior to that day, which brings us to a year ago now in New York.  Last summer is when my gut knew you were starting to slip away from us.  It was such a battle for me to try and convince everyone else to really look and listen to you.  Ultimately, the only two differences would have been you knowing the hospice team a few months longer, and maybe fewer fights between aba and I?

Speaking of aba, he woke me up one night this past week to tell me he saw you.  You held his hand and walked with him to where your friends were.  You then left him to go and play with them.  He said it felt so real he couldn't even understand it.  He couldn't stop saying how happy you were.  My heart was filled with such joy.  I knew the minute he said you let go of his hand and walked away to your friends that I am still not ready for you to visit me.  I love that you are aware of that but still chose to let us know you are truly ok and so radiantly happy.  It's all we have ever wanted for you.

This weekend we had record-setting temperatures.  It is absolutely ridiculous here.  We didn't need this type of reminder to know why we choose to flee this city every summer.  It is horrible.  I literally drive to check on your rocks and hop back in the car because it is way too hot to stay longer than 5 minutes in the sun.  Sometimes you throw us a heated breeze, Laeya and I always make a comment when it happens, it makes us smile, and we always look up at the sky and thank you. 

Your siblings and aba have been splashing like maniacs in your spa.   Aba says it is his happy place. They are treating it like a pool, temp, toys, jumping, and all.  It is really insane to be out there because I get soaked sitting nearby.  I have been able to walk up the steps and be out there while they are inside for a bit without crying, so that's a plus.  I have taken to watching way too many "tasty" food videos and spend their pool time making various dinners.  I have also perfected my at-home coffee beverages and smoothies.  Nurse Paige wouldn't even know who I am anymore because I have only been to a Starbucks twice since March and it was only when we drove out of town.  Winning!

As always I will finish off by telling you how much you are missed and loved.  Laeya says she is having a bit of an issue figuring out the dynamic of siblings without you here, I am in that boat for every dynamic.  I will continue to hope and wish you are having a great time.  No matter how incredibly hard it is for me to be here without you, I am pretty content with aba's account that my wishes and hopes are coming true so may they only continue, and may you only find further happiness for yourself. 

Love always,
Ema


The Mighty Contributor

Friday, July 10, 2020

Telling guilt

During our last grief support group, we were asked if we could say something to our guilt what would we say.  I couldn't really think of my answer on the spot because so many thoughts flooded my mind like they were part of some giant tsunami.  Guilt in regards to Sonzee has so many dimensions that it is even hard to pinpoint which guilt I would be referencing.  Part of me wondered if this was one of those times that I was supposed to say what I thought someone wanted to hear?  I don't remember if I ever ended up giving an answer on Monday, but yesterday when I was watching the throwback video the question popped back into my mind.  My answer at that moment was I would tell guilt that I did one hell of a job making that little girl have the best life she could possibly have.  The words bring tears running down my cheeks because even though I know to my core that it's the truth, the shadow of guilt literally taunts me as it says "but it wasn't good enough".

There is always this constant war going on within my brain.  Guilt continuously pops into all of my memories and attempts to convince me that situations that were completely out of my control were somehow meant for me to control.  There are times when I almost cave into listening to it, but looking at the physical proof of pictures and videos brings me back to the truth.  I can see that we at least always tried our best.  At the very least we gave it our all, and we gave her whatever our best was for that day.  There is no such thing as being a perfect parent, and there were times I was exhausted and I am sure she could tell, but today I would still tell guilt it has no place.

The definition of guilt as a noun is the feeling of having done wrong or failed in an obligation.  I will forever wish her life was different.  I will forever have hoped that she didn't have to endure what she did for 4 years 11 months and 22 days.  I will forever dream that her siblings didn't have to learn about medical complexities, hospitalizations, childhood death, and grieving.  I will forever wonder if there was some way we could have made her life easier or better for her.  But overall, today, based on the evidence I continue to come across, I am confident we didn't fail her in any manner.  So today I will tell guilt,  "today is not your day, and tomorrow isn't looking good for you either."


The Mighty Contributor

Monday, July 6, 2020

22 weeks

Dear Sonzee,

It's been another week down, and an eternity of them to go.  This last week was a pretty rough one, I am sure you could gather as much from my letters.  It was the first week I broke down in the kitchen and your siblings were excitedly telling one another "Ema is crying".  We can blame it on aba because he saw me struggling to hold on to the invisible thread and he got up to give me a hug and that was all it took for me to completely lose it.  I know it is okay for them to see me fall apart every once and a while, but I really dislike any time it happens. 

The one good thing about time passing by is that aba and I are discussing things related to our grief a little bit more, and it appears for once we might actually be on the same page.  In all honesty, it doesn't really help all that much.  All the pages suck.  They all involve some sort of attempt at trying to justify that you are in a better place while soaking up all the amazing moments with your siblings and yet ultimately fighting the incredible pain of missing you all at once.  It's another tough picture to paint adequately.  It's something no one should have to fathom much less endure, and anyone who gets it sadly is living it.

Your entire life was such a struggle for you, you faced so many challenges and you were in some amount of pain probably close to always.  It isn't a life that we would have chosen for you, nor is it one we would wish upon any person.  Yet it was the life we came to know and learn to live with and some days you even put on a smile.  It was so hard for us to watch you go through everything you had to, and I don't believe those who would try to tell me you didn't know any different. I am sure you were exhausted seizing all the time, not being able to eat by mouth, and not being able to tell us about anything you wanted.  I can only imagine the amazing things you are up to now that you are finally free.  I am sure my heart would be beaming if I could sneak a peek through some tiny window into your new world.  This hope of you being the 5-year-old you never could have been here, is what aba and I remind ourselves is what is for the best.   It's our only consolation prize.

Laeya told us over the weekend that you have come to visit her a couple of times.  She said you are "a complete girly girl".  I asked her if your hair was done, and she said "it's always up in the cute pigtails with the bows like nurse Paige gave you".  She said your voice sounds like a mixture of Noam's and Meena's...I wish I could hear it because I cannot really hear it in my mind.  She said you have been hanging around with saba and that you and Harper have had some playdates.  She said she knows you have at least one other friend, but she can't remember if you told her the name or if she just forgot, but you were going to see her later on that day.  I am glad she sees you in her dreams because I know how hard your absence has been for her. 

As always I hope you are staying safe and know how much you are missed and loved.  Until next week.

Love always,
Ema 


The Mighty Contributor

Friday, July 3, 2020

5 Months


Dear Sonzee,

Today marks not one, not two, not three, not four, but 5 official months since we last cuddled.  As usual, writing that first sentence brings tears to the forefront of my eyes and a huge lump into my throat.  This month has brought about some changes in this whole grieving journey, I wonder if you noticed them yourself?  I think some might call it growth, from my perspective, and for me, it is honestly just a significant amount of sorrow that I didn't know could even be added to the experience.  If I take a step back and focus on you than I can see the whole potential growth concept.  I hope my actions will further allow you to move forward in your journey.  Don't get overly excited, because you didn't turn 18 yet, so my freedom for you is only being given in tiny tiny increments.

Man, this parenting thing has gotten really complicated these past 5 months.  I am so confused about where I stand as your mom and what that actually means.  I have no idea what any of my actions mean for you.  I have no idea if anything I do even impacts you at all.  Do you hear my thoughts or are you able to read my words?  If you can and do, I wonder if these letters to you make you feel guilty at all or keep you from doing anything out of fear of breaking my heart more?  I pray that isn't the case, but at the same time, I won't ever be able to let you go enough to stop them.  My only hope is that eventually, we can both find a balance respective to each of our new lives.

During this last month, your siblings all finished the school year.  They have yet to finish the workbooks I got them for supplemental work back in March, but maybe by your 6th-month post, they will have completed them.  Noam has started to bring everything plus the kitchen sink into his crib at night to go to sleep.  Your book has been a staple there as well.  He is really into Llama Llama lately but still gives some time to the Pete the Cat books.  He is talking up a storm and still picking on Meena, which is honestly just so funny (although, not so much for her), but we really cannot figure out why he goes after her.  Maybe it is because she is so chill it makes her quite the easy target?!

Tzviki and Noam are becoming pretty close pals.  It has been really neat to watch their relationship unfold.  It is filled with hockey sticks, wrestling, ball throwing, and just random shenanigans that are really not safe.  Tzvi and the girls have been spending a lot of time building lego communities and when it's cooler in the evening will go ride bikes or scooters out front.  Tzvi would play hockey all day out in the heat, but I am just not up for that during the 100+ temperatures.  He has still been pretty quiet about you being gone, but he is a sensitive little guy, so I know he is internalizing it all.

Laeya and Meena have continued including you in their games with the Sonzee Bears.  They are both getting on me to get the books made of you and each of them, I have Laeya's in the shopping cart and just need to buy it, Meena's I need to start.  Everyone has been helping with their plants, but it is really not going so great.  The milkweeds are doing fabulous, but we have lost all the flower buds on the Kangaroo Paws.  I am attempting to get new ones to grow.  The stems are still tall and not droopy, so I know they are alive...they just aren't as easy as was suggested.

I hope this last month has brought you new happy times and positive lessons.  I hope you are continuing to make friends and that you are meeting nice people.  I hope you have explored more of wherever you are and spend your days doing whatever it is that makes you happy.

You are missed and loved immensely and I find it hard to believe the next monthly letter I will write will be in honor of half of a year without you being here.  I think it is going to take the next month to process that fact alone.  Until then my little bear. 

Love always,
Ema

The Mighty Contributor

Wednesday, July 1, 2020

Another month

Today is day #1 of July 2020.  This changing of the month didn't seem to come at me as quickly as others.  Maybe I was more prepared? Maybe I am just getting used to it?  Maybe I just feel removed from the concept of time?  I can't figure it out, and honestly, I don't know if I even care to try.  I will just accept it for what it is.  Another 30 days has passed, and another 31 to go until I am right back into this cycle of having lived another month without her here.  On Friday she will be given her 5-month glow in the dark rock, just another tangible reminder.

This July is going to be so different than how we have spent July's in years past.  I suppose it is how it is supposed to be, but I am not an incredible fan of all of this change.  There has already been so much unpredictability with this entire year and every moment since February 3, so I am really hoping for some peace and calmness to be blanketed over me.  Our option b for July is also already seeing some kinks, so part of me says if there wasn't covid19, people could come and find me on the couch permanently for the next 31+ days with some tea, wine, and ice cream.

For now, I will bid a complete farewell to the first CDKL5 Awareness month that we endured without our little bear present.  I will go into the front yard and remove the awareness yard sign and tuck it in its place, ready for its debut in June 2021.  I will attempt to prepare myself for another month of new Sonzee-less family experiences and memories, and I will give myself a quick pep-talk while trying to reassure myself it will just be another month.


The Mighty Contributor