Monday, September 13, 2021

84 weeks

Dear Sonzee, 

The clock keeps ticking, the days keep passing, I find myself 1/2 way through September and 84 weeks away from life with you.  I still don't really understand how life continues, and despite how complicated a simple 3-word phrase really is, it just does. This "life after Sonzee" is unreal at times, confusing, and really hard for my brain to process at times.  

We spent our 2nd Rosh Hashana without you.  I wrangled your siblings together for a picture, but I hardly even wanted to do that, I just knew I should.  This Hebrew year we will be celebrating Laeya's Bat-Mitzvah.  I cannot believe she will be 12.  I cannot believe you would be turning 7 just a few weeks later.  Instead 5 days after we celebrate her milestone, we will be honoring the second anniversary on the Hebrew calendar of your death.  

Noam woke up sick Saturday morning.  My immediate thought was one of panic, and then within 3 seconds I realized, rather, I reminded myself you aren't here so I have no reason to worry.  He will be over it quickly and even if your siblings caught it, it's essentially nothing.  He was over it within 24 hours, and I have no you to worry about, so life will just continue and it will take me longer to get over the panic it momentarily brought into my mindThe ease of these parts of life breaks my heart, the PTSD from life with you is permanent, and so it will be days before my fight or flight response settles and the anxiety of the mini panic subsides.  The grief of not having you just adds another level of heaviness to it all.

We booked tickets for Tzvi's hockey tournament coming up in Chicago.  Another reminder of how our life is so very different.  There was no call to Ryan House, no checking with nurse Paige's schedule, no feelings of potential guilt over us debating if we would take you with us.  It was as simple as picking a flight and me requesting the days off from work.  The guilt of life without you is extremely heavy.  It counteracts all the smiles.  

We received the lists from the company dealing with the house and water damage.  They labeled items "total loss" and had pictures.  I found myself crying in a parking lot over your clothing wardrobe.  I don't understand why that had to be damaged.  We had recently moved it out of the playroom and into Laeya's room so she could have a piece of you.  It's gone.  It was listed under "total loss", but we asked them to save it and I am not understanding why it wasn't.  Box 121 included items from Noam's closet, including your last package of diapers.  It was listed as "total loss".  It shouldn't have been.  They never were wet.  They were high on a shelf.  They have no monetary value, I want the package of diapers back.  Your bedroom doors were taken down, I have never erased them.  They have all of your last medication times and amounts written with nurse Paige's, Auntie A's, and my handwriting.  Your last doctor appointments are still there.  The doors were in the pile of "total loss".  Part of me wants them to be taken away like your bed, without me being aware, without me knowing.  The other part wants to cling onto them for dear life because it's all I have left of life with you.  

I feel like all of this entails some messages from you.  I am trying to figure out what specifically they are.  I am gathering it has to do with forcing myself to deal with your absence.  I also think it is you trying to tell us we have to move forward.  Both of those things I do understand are necessary, at least logic-brain says so, but grief brain, not so much.

Anyway, little girl.  I miss you beyond words.  I hope you are doing well. I hope you know how loved and missed you are.

Stay safe. Be healthy. 

Until next time.

Love always, 
Ema
The Mighty Contributor

Wednesday, September 8, 2021

83 weeks and 2 days

Dear Sonzee, 

I really do not understand how these weeks continue to fly by.  Between work and activities with your siblings, I can hardly remember much of the specifics.  Tzvi had his first scrimmage last Tuesday and then had his pre-season seeding tournament.  I wore my new purple glitter boots and my new Hockey mom sweatshirt.  His team had 2 wins and 2 losses over the weekend which isn't a bad way to go into the season. I am going to need to ask you to please spread your juju to him and help him with his shots.  He just needs a confidence boost and then he will be good to go.

Meena went back to gymnastics last week and after a day got moved up a level.  She is slated to compete in a year, which gives me ample time to try and figure out how to balance competitive hockey and gymnastics along with whatever Noam and Laeya are doing.  I swear I need to clone myself.

Work is a bit of a juggle lately since I changed my status from part-time to full-time. I was finally getting into a rhythm and then the holidays appeared, so now I just feel a bit overwhelmed trying to make sure I stay on top of everything and get everything done on time.  October will be a breath of fresh air when it finally arrives. 

Last Friday pop-pop gave us a bit of a scare but thankfully has recovered.  We spent another Shabbat spread all over Phoenix and it is feeling a bit insane not being together and having to always find a place for us all.  Everyone is being so amazing with housing your siblings as well as us, but it would be nice if could find a more semi-permanent solution instead of being nomads.  I will save my update on the house and Rosh Hashana for next week since this theoretically shouldn't include anything since Monday.

Anyway, little girl.  We miss you.  We love you. 

Stay safe. Be healthy. Have fun.

Until next time.

Love always, 
Ema

The Mighty Contributor

Friday, September 3, 2021

1 year 7 months

Dear Sonzee, 

Another month has come and gone.  This one, not one of the easier ones for sure.  I am sorry I haven't been able to visit your grave.  I will go today though to bring your new rock.  I have so many I need to make for all of the upcoming holidays, and obviously, one to represent the flood of the house.  The house alone has really tipped my scale of coping with you being gone.  Aba warned me about going into the house the other day, I wasn't planning on going, I didn't end up going.  I really do not think I will be able to ever walk by your room again.  I keep saying that I know you are not there and that all your stuff is with us, but it is just so hard.  Even if they replace the walls, it won't ever be the same.  We won't ever have your bed in there, we won't ever have that uncomfortable red chair in there, and you won't ever be there.

You haven't been there now for 19 entire months.  I realized this month that had we never had Noam, Meena would have lost her title of big sister.  Obviously, she would have always been your big sister, but she wouldn't be an "active" big sister,  She would have become the youngest, the entire order of the house would have shifted.  Another concept I am going to have to prepare for because time continues to fly by at record speed and before I know it, I will be staring at my screen and writing to you on the day that Noam turns 4 and then a year later when he outnumbers your days here with us.  In just 2 months and 25 days, he will also be 4.  I really do not know how I will be able to process that since you will forever remain 4 years old to me.  The thought of your younger brother turning your age and then aging you makes this even worse.  It is just another horror of life after burying you.

Noam asked (again) where you were.  I reminded him you were buried in the ground.  He gave me a chuckle as we drove to school and he said, "Ema, you are driving over Sonzee".  I reminded him that you were safe in a grave next to the street and in a place, no one could drive over.  His journey with your absence is fascinating to me because of his age and comprehension of the concept of your absence.  I know he misses you a lot.

This month brought me more tears than I think I have cried over the last 19 months.  I feel like this month brought me back to square one of my grief and if it is even possible into a darker part that I never experienced.  It has definitely been the most challenging.  That is the worst part of grief.  Thinking it can't get worse and realizing how false that statement is.  Similar to life with CDKL5. It can get worse, it does get worse, and it will get worse.  I am still waiting for it to all become more manageable. I suppose I will even continue to hope that it is still possible.  Until then I will just be thankful you left me in the hands of some amazing supports.  

Anyway baby girl.  19 months of missing your sassy smirks and beautiful blue eyes.  19 months of missing your snuggles and your curly hair.  19 months of missing seeing you in your Rifton chair by the big window as I drove away or came home.  19 months of missing your nurses and all of your equipment in the house.  19 months of not accessing your port or hooking you up to your TPN/Lipids.  19 months of no feeding tube changes, doctor appointments, and dropping you off at school.  19 months of incomplete family photos and missing your presence in our home.  19 months and counting of missing you forever.

We love you Sonzee bear!

Stay well, stay healthy, and stay safe.

Be free.

Until


next time.

Love always,
Ema



The Mighty Contributor

Monday, August 30, 2021

82 weeks

Dear Sonzee, 

Another week has gone by, making it 82 weeks.  I feel like maybe things are calming down?  Or maybe it is just that things do not feel so chaotic and my post to you is on time so it feels like I am back on track?  Who knows?  

We spent our first full week in our temporary home.  It really is a beautiful space, but knowing we will be moving again within the next month feels exhausting, especially with all of the holidays coming up. I didn't get a chance to intercept the yahrtzeit candle holder before they packed my desk area, but Mrs. Zupnick picked up a beautiful one over the summer for us so I at least have that as a stand-in.  I went back to the house two times over the week and each time my eyes just filled with tears.  The boxes that had been packed were taken away, the damaged furniture is gone, the house is almost just floors and walls.  12.5 years of construction projects and making the home ours, essentially gone.  I walked to your room, but it was just so hard to go inside, I took a quick picture of it amidst the chaos.  Aba ended up taking down everything off the walls yesterday, he said it was therapeutic, but to me, it seems similar to picking out your gravesite, something I was just incapable of doing.  I know you aren't in the room anymore, but it's where all of our memories are of you...something we can't ever do again.  

I initially thought I would go and sit on the floor of your room after everything was gone and have a good cry, but as I consider it more, maybe it is just best if I never walk into that space again.  I won't know if I will regret that decision until it is too late, but if I use the motto I did throughout your life...and death process, I will just make the best decision I can at the time with the information I have and be confident in it regardless of the outcome.  At this point, my gut says I shouldn't see your bed and chair be removed nor should I see the space without either of those things present.  I picked you up out of that bed and carried you out, I can't go through it (again) with the last places you physically ever were. 

We finally got up to Bear Pines this weekend.  It was amazing to be back there.  It's only been ours for a little over a year, but it's familiar and a constant in this chaos right now.  We laugh as Noam now names the houses, "New York house", "Dallas house" (The Howard's), "Flagstaff home", "Phoenix home", and this one hasn't been named just yet.  He makes us sound like we are super-rich people...Poor guy has been through so much in his 3.75 years.

We went to a butterfly release yesterday.  I am trying to be more open to signs, so much so I have purchased a ton of books about being open to them.  It just feels crazy sometimes to attribute things as a sing, because of course there could be another reason why something happens.  We were given a butterfly to release specifically in honor of you and then they released a final butterfly for all children who had died, and it flew right into Meena's hair.  Then he/she was held by Laeya and then every time we tried to release him/her, she/he flew back to me or back to Laeya or Meena.  It literally walked around on us until it was time to leave and Laeya placed it on a leaf.  I could say maybe there was something wrong with it and it couldn't really fly away, or I could be open to the fact that maybe it was a message from you. There are so many sayings related to butterflies and death, that if I allow myself to be open to it, while maybe it was a coincidence of the situation, it very well could also have been you sending me a message that no matter where we will be, you are always with us.  I mean, this butterfly could have flown into anyone's hair and hung out with any of the other families, but it came directly to Meena, and we once had a grief activity where we wrote down something we wish could tell you and Meena mentioned she would tell you that she saw the butterfly.  I didn't know anything about you two and butterflies but putting it all together makes more of a sign than a coincidence.  Thank you. 

Anyway baby girl.  I will let you go.  Please stay safe and healthy.  Your brother has his first scrimmage this week and a tournament this coming weekend...please come if you can.

We love and miss you!

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, August 24, 2021

81 weeks and 1 day

Dear Sonzee, 

I feel like this was one of those "longest weeks ever" types of weeks.  It took us close to the entire time to find a rental for the month and we are debating what we are going to do after this month is up.  We found out the damage is pretty rough, which we knew, but now we know more.  My, well, really it turns out it was aba's too, so our worst fears came to fruition and we have to remove the furniture in your room. Your bed, the bookshelf with all of your stuff, that horrible Ikea chair that I absolutely hate and didn't understand how your nurses never complained, the walls...they all have to go.  It is a lot to process, more than aba and I really can, so we continue to push it off. I am sure in next week's letter I will tell you how having everything taken out was a close to second to the day I had to walk you out of the house to never return.  The fact that the last place you ever laid and the only room you ever knew will be gone along with you, is really honestly way too much for us.  It is bringing a lot of serious conversations to the table (that we were avoiding).  My logical brain says it makes zero sense to replace your bed or replicate your room, you aren't here to use any of it and what is the point.  The emotional part of me says to keep it all despite the damage.  The logic will win, but the emotional is not going to recover.

We spent the weekend out of the house and it was nice to escape the noise of the fans and the chaos of the house.  I have your clothing in a box now, so maybe I will reach out to those who I have been in contact with to make quilts.  We have one, it is absolutely amazing, but now I want every article of your clothing made into a quilt for your siblings as well.  Truthfully I can't really look at the first one that was made because it makes me cry, but one day I know I will, and it has set the bar really high for the next quilter.

Tzvi had his team hockey party Sunday, I am really excited over the new colors! You would have looked adorable in all the purple, silver, and black.  I have my boots ready to go and new sweatshirts on the way!  I am really excited for him and all that he has in store this year for his hockey growth, make sure you pop into a game or two or send some of that awesome juju!

Anyway my love.  I miss you a ton and am starting to be more mindful of the signs you are sending me. They may not be what I want per se, but I am starting to acknowledge they might actually be from you, it is just tough.  

Stay safe and healthy and have fun!

(oh, and ps: make sure you tell uncle happy birthday!)

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, August 17, 2021

80 weeks and 1 day

Dear Sonzee, 

80 weeks...and one day, my eyes squint as I wonder how; my heart hurts as I dare to wonder why.  These last 6 days have felt like they have been an eternity themselves, sometimes I wonder what role if any you are having in all of it, I struggle to figure out if and what you are trying to communicate, much like during your life.  Last Thursday night Meena, Laeya, and I returned to our grief groups.  I really missed mine.  I am one of the furthest along in terms of physical distance from the death date, but in terms of the journey, at this point, I feel like I won't ever be graduating.  According to all of the books I have read there will be a day that I will look back and tell the 'me of now' that one day I will learn how to continue to move forward.  I will keep waiting for that day.   

We were supposed to go to Bear Pines last weekend, but when Friday rolled around my energy levels and ability to cope with grief and life were impossible.  We did a quick family vote and 4:2 meant we stayed in Phoenix.  Ema has flown off her rocker completely and Meena and Noam now have their own baby kitties, Bella Nicki and Bailey Nina.  They were temporarily being housed in your room while everyone adjusted, so I cleaned up your room by putting away all of the clothing for your potential clothing quilts and moving your car and stroller out of your room.  We woke up Shabbas morning to the entire house being flooded.  Aba and I are more annoyed at the inconvenience because after burying you, very little can actually be worse.  My tears were of the thought of what will happen to your room when they do the official moisture checks. What about your bed?  What else of you are we going to lose?  Luckily all of your important items were away.  Aba found a handprint father's day gift from you in a bag, but thankfully your handprints are still intact and just the year and one word were blurred.  The cabinet was soaked so your blankets on the bottom shelf were wet, but they were cleaned and dried by Saturday night. The hardest loss currently is your hospital bag that I have never unpacked from the last time you were in-patient.  I started to unpack it when I realized aba hung it up on my closet door not wanting to tell me, but knowing I would realize on my own when I saw it.  I saw my hospital socks, a pair of leggings, and a shirt before I completely lost it and decided I can't unpack it, not yet.  I won't ever repack it again so I can't unpack it.  For now, it remains on the hook until I don't know when?  

Aba initially said this flood is an omen and it is time for us to move.  I told him I can't and won't leave you so we aren't going anywhere.  I am left wondering if this was a message from you telling us that we need to "start over", and that we need to move forward?  I know you would totally be on my side for renovating the house, but honestly, my energy level and ability to take on this type of project right now is similar to your bone density level...in the negative range.  Maybe that is why it is happening though? Maybe it's to keep me busy so I keep pushing on? Just another thing to do to keep my mind busy and not fall deeper into this grief pit?  Not sure it is really going to be helpful?  I am torn on if this means we should repurpose your room, nothing feels right, I am so utterly confused.

How have you been doing? I haven't asked how you are doing or what you are up to. Do you have nice friends? Do you get to see saba? What do you do every day? Is someone taking care of you? Are you scared? Do you feel safe? If you can somehow answer anything, just let me know if you are truly doing ok.

Anyway my love.

Be safe. Know how much you are loved and missed!

Until next time. 

Love always, 
Ema



The Mighty Contributor

Wednesday, August 11, 2021

79 weeks and 2 days

Dear Sonzee, 

I am so sorry I have fallen behind on my weekly posts and posting picture throwbacks of you.  I don't want to burden your peaceful soul, but ema is really struggling lately.  I was talking to Mimi's mom today and admitted that New York sent me "backward" on this crummy grief journey.  I say backward, but really it is more that I am cycling back into the whole denial concept of you actually being dead, which I think happened because I wasn't visiting your grave as much.  Now everything is significantly harder to deal with.  I have your soapstone butterfly to honor another 6 months of you not being here and I can't even bring myself to go to your grave.  It breaks my heart on so many accounts. I am so sorry. The same has occurred with posting those throwback pictures of you each day.  I used to look forward to doing them, but now all I see when I open google photos and type in the date is there are 2 years without pictures of you on that day and I can't bring myself to scroll down to the years you were actually here.  

This last week we were visiting Harper's family in Dallas.  It is always comforting to be around them, I am sure you remember how amazing they all are. We went back to Six Flags this year, it was another first time without you sort of deal.  I keep managing to survive these first times.  Overall it was as good of a day as can happen in ridiculously hot temperatures in an outdoor park with your siblings.  It felt like one of those movies where my mind flashed back to where we stopped, adjusted your fan, and made sure you stayed cool or sat out of the rides.  I was almost relieved that Noam was too short because he was the perfect excuse to not go any of the roller coasters, but that used to be your job.

After driving back the 15 hours straight on Monday I went to work on Tuesday.  It keeps ringing in my mind that I don't know what school you would have been in so I don't know what to put on your "first-grade" rock.  It also doesn't compute in my mind that you would be going into first grade?  It doesn't make sense, you never even started Kindergarten, you never graduated from preschool.  My mind can't handle all of this movement forward. I feel like I am being catapulted out of a cannon, complete with free-falling and crashing down.  I feel even worse telling this all to you.  I just truly pray that you are beyond happy and at peace.  It is really the only consolation there is for you not being here.

79 weeks and 2 days of missing your cuddles and physical presence and always counting.

Until next time baby girl!

Love always, 
Ema


The Mighty Contributor

Wednesday, August 4, 2021

18 months


Dear Sonzee, 


I am actually lost for words on the fact that it has been 18 months.  The last few weeks have been so draining on the emotional level that I have lost my entire ability to deal with anything grief/you-related.  That makes things extra challenging because trying to ignore grief means I am essentially ignoring you.  I have zero desire to function but have no option not to.  I didn't expect this to get harder.  I thankfully do not have any expectations, but even without them, things keep feeling worse. I am sorry I am slacking on my daily throwback pictures, but that also falls in the scope of things I am finding impossible to do.  It is just this intense feeling of extreme exhaustion, but hard to really put into words.

Monday marked the completion of 78 weeks without you.  Tuesday at 1:08pm marked an entire 18 months without you.  Today, Wednesday, at 1:08pm(AZ time) it will mark the beginning of the next smaller "count up" to the 2-year mark.  I rationalized I could write this today because it is before 1:08pm, and therefore still falls under the official 18 months day, meaning I did not miss the actual date.  Trying to keep my guilt at bay and honor my moment in grief is a massive struggle to balance.  

Today I find myself in Dallas, in our Dallas home, at the Howard's.  It feels comforting to be in their presence during this time because even not talking about anything grief-related aloud we are with people who have lived the same life and journey of CDKL5.  This week brings years of "on this day" memories and moments, and there are some amazing ones, but my heart hurts.  If I harbor any regret within your life frame, it would be that we never got to take you to Morgan's Wonderland.  It was on the agenda that first pitstop here in 2017, but then we just clicked with the Howard's, our plans changed, and we said "next year".  "Next year" became six flags, which we did for 2 years, and then, you were out of "next times".  I probably won't ever be able to bring myself to go there now; that's okay.

It is hard to believe life continues to move on without you here. It still feels like one of those movies where the characters freeze but the background continues to change and all the people outside of the focal point pass by and continue on with their roles. I still feel stuck.  I still feel like I am always struggling to just get through each day.  I still feel like I am back reliving your life and death as if it all just occurred today.  I am thankful for the ability to recall so much, yet am saddened by some of the everyday details that are no longer as poignant.  Certain facts that were once as ingrained in my mind like the ABCs are no longer pertinent to my every day and therefore have been lost, like the ability to remember at what age and how much of your medication you used to take, how you reacted to it, or what side effects you had.  The exact placement of your genetic mutation used to be in the forefront of my mind, and now it requires a text to a friend who knows or a lengthy search through all of your files.  Every day I feel like I lose something else, but I won't know what that is until I am asked and can't remember or a situation brings it to my attention.

18 months have brought your name missing from pull-down bars that hold the names of the rest of us in the family.  Your insurance cards still sit in my wallet behind the ones we now use.  Your room still holds your Rifton chair and your bed, both empty, but unable to be removed.  Your car still sits in the garage, your clothing still sits in piles waiting to be made into blankets.  Your Ativan and meds of a similar type still sit in sealed containers in the laundry room cabinet.  Your presence feels less and less active, and the "caught off guard" moments of grief continue to come like punches to the gut.  Life of us being 6 has (sadly) become normal in terms of your physical presence, despite you always being in our mind.  Sadly the world can't and doesn't read my mind.  

Anyway baby girl. My hope for your 18 months is that they have been the best you could have ever had and better than what I could give you here.  You are never gone from my thoughts. You are never out of my heart. You will forever be spoken about.  Your name will always be said, and you will always be part of our family.  We all miss you and wish things could have been different.  Until we can see you again, continue to run free, and do you!

We love and miss you!

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, July 26, 2021

77 weeks

Dear Sonzee, 

Today marked 77 weeks.  It is our last Monday in NY and it is also Tzvi's 10th birthday.  This last week was jam-packed and a funfilled one as we picked up Laeya and Tzvi from camp and then dropped off Meena for her 9 days of sleepaway camp trialing.  A week ago Miss Malka and I went to Woodbury without you but brought you with us in conversation.  It was mixed tears and laughter.  We really missed your wheelchair because we had nowhere to put our bags.  We talked about the time your foot accidentally got stuck in the door.  In hindsight in that 2018 year, we wonder how often we accidentally fractured your legs before we learned that your bones were so brittle that they could break with a simple tap. We are so sorry about that.

We picked up Laeya and Tzvi on Tuesday.  Both absolutely loved the camp experience, unfortunately, Tzvi didn't exactly love the specific camp.  It's ok, we found a new one for him to try next summer.  Laeya is already excited to go back to see her summer friends, she can't wait.  We gave her saba's old iPhone 5s to use the cloud to talk to her friends.  We will be happier when we go back to Phoenix time and she isn't on it so much, but it is nice for her to have this group of girls that she is loving to talk to.  

We took Meena to her sleep-away camp trial.  She is having a blast. She called us Friday to say "good Shabbas" and that she was having so much fun.  The camp doctor called us yesterday to let us know she hurt her foot, but I saw in the pictures that she didn't exactly take her advice to rest her foot and stay off of it, evident by her rock climbing.  What do we do with that one?!  We pick her up at the end of this week.

We finished off the week heading to uncle's and Hay-Hay's and went to American Dream Mall to celebrate Tzvi.  It was bitter-sweet as it is another age you won't ever turn and we had no accommodations that were needed to be made for our day today.  I had to put the big girl panties on to make it through the day without the tears...which I did quite well if I may say so myself, but my heart was constantly aching and the tears blended in well with the water park atmosphere. 
 
We have one more week left in NY.  I don't think any of us are really ready to go home, but we are excited to be going to Dallas to see the Howard's, and ema does need to get back to work. 

Anyway, my love...missing you as always...so much!

Have a great week!  

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, July 19, 2021

76 weeks

Dear Sonzee, 

Today will be the completion of 76 weeks without you.  It is the 5th Monday in New York without you, almost seems surreal.  This last week your New York family painted you rocks for me to bring home to you.  We simultaneously packed Shabbas boxes for hospitals in the Tri-state area.  I wish during all those shabbas' we spent in the hospital together we had been given these boxes.  The only time we ever had anything like these boxes was when we were in CHOP together.  

This week was a bit more challenging for me for a couple of reasons.  The first was that I have been really missing you and so many people here park illegally in the handicapped parking spaces and it just strikes a chord.  I have been unable to say anything to anyone since you have died, but it doesn't change the anger that builds up inside of me.  This week I managed to open the parking mobility app, and stared someone down so hard through their window they never exited their vehicle but she did look like she was searching for her placard and couldn't find it.  I won't allow myself to talk to anyone because I have created a dialogue in my mind that would inevitably boil down to the person asking me if I need the spot and me bringing up the fact that my reason for the spot is no longer alive, them not caring, and me falling apart in front of people who don't matter.  So, while I want to slit their tires and wish them the need to actually require the use of the spot, I just continue to keep it inside.  

In addition to the parking issue, I have felt so somber because while the world continues to care solely about Covid, everyone seems to continue to forget about RSV, the flu, and other colds that can also kill various populations.  If it isn't corona, no one cares, and it makes me horribly angry and sad!  The last summer you spent here we spent 2 weeks driving around to various hospitals to find out you had adenovirus, you know, the other fancy name for "allergies" that no one cares about.  That's what started your downfall.  Or rather, it let me know your body was beginning to fail.  It really breaks my heart that people just. don't. care.  The world feels everyone should protect the most vulnerable, but only on their terms, and only when it is them who is vulnerable.  Remember how many things we missed out on because I had to make sure you were protected as much as possible?  The world never went out of its way for the small percentage of you and all the rest of the rare.  (PS: they still don't, unless of course, it is covid-19 and then they expect everyone to protect them (insert ema's eye roll)).

This was the last full week without Laeya and Tzvi.  Aba and I are SO excited to pick them up Tuesday.  It doesn't help my heart that I get to pick them up, but haven't been able to bring you back to me.  Hard to believe their month of summer is already over.  Hard to believe summer, in general, is almost over.  I am still torn on wanting time to slow down because that means it will be longer until we meet again, but also not wanting it to keep flying by because that means it is further from the last time I last held you, looked you in your eyes, and got to tell you I loved you while I gave you a kiss.  

This week I walked into a store and was looking at charms when I was caught off guard by the one that had 3 hearts with "big sister", "middle sister", and "little sister".  Sometimes I wish I had a brown bag with me to breathe into when I get punched in the gut.  Instead, I snapped a picture and sent it to Mrs. Zupnick along with the gif of someone being punched in the stomach by a wrestler.  Maybe one day I will buy it and either keep your heart on my necklace or bring it to your grave for you?  I also saw a mother/daughter necklace and it had only 2 daughter parts and that made me feel sick because I would need three, but could theoretically get that one.  Needless to say, I left them all on their shelves.

Anyway my love.  I guess that is all for this week. I love you and miss you lots!  Continue to be safe and happy and free!  

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, July 12, 2021

75 weeks

Dear Sonzee, 

It's crazy that it has been 75 weeks.  75 Mondays that you haven't experienced.  75 Mondays I have experienced without you. Somewhere along the way, I have even stopped picturing what we would potentially be doing together.  Instead, my mind wanders to what you might be doing with your independence and complete freedom.  The problem with that is that my mind I am sure limits your potential because you probably have no restrictions and can do literally anything and everything, including things my mind cannot even comprehend.  

This week Meena and Noam continued to enjoy day camp.  Meena won an award and Noam has all the counselors wrapped around his finger.  He is like the little "big kid on campus", everywhere he goes they all call after him, he eats up all the attention.  Laeya is loving camp, we got to speak to her for a little and Tzvi didn't complain but mentioned we should find a hockey camp for next summer.  You know how difficult is it to keep him excited about anything other than hockey for lengthy periods of time, such a pain.  They both have colds, but that is definitely par for the course.

We haven't made it over to Kelder's Farm yet, we were supposed to go yesterday, but the weather was not on our side.  To be honest, I keep seeing the pictures pop up and I am torn on going this year in general.  It will be with either you and Meena missing or you, Laeya, and Tzvi, and honestly...maybe it means we should just stay away?  

I have been doing some reading and have started to needlepoint. I am making Tzvi his talis and tefillin bag, figured a little less than 3 years gives me ample time.  I have been on a roll, but have a feeling wherever I finish off this summer is where I will pick back up next summer.  I actually look forward to working on it a little bit each day, so that is good.  

So many people have continued to seek me out to talk about you.  The only slightly awkward time was when one of Meena's friends asked about my necklace after looking at the charms and I explained Meena had a sister who died, and she looked confused and said she thought she heard me say you died, and I had to say that I did say that.  Noam mentioned he wanted you to come home the other day.  That is the 2nd time in the last 6 months he has said something about wanting you to come home.  I hate having to break his little heart by reminding him that you can't come home because you died.  

A few times, aba and I have talked to people who haven't known us and the conversation quickly turns to kids.  Thankfully the phrasing of the question keeps the conversation light and doesn't require us to explain every detail of our lives.  The topic quickly turns to blanket statements about camp and then they ask who is at camp.  It isn't that I don't want to bring you up, it is just I am in this weird place where I don't necessarily feel it is everyone's right to know about you.  The initial reaction from strangers is always "I am sorry", or some other platitudes and I don't feel like telling them "it's fine" because it is not, it is better to just avoid the entire situation. I did joke with aba that at one point I might just throw out that you are in camp heaven and see how much of a double-take people do.  I mean, it could be fun. "I have 2 kids in day camp, 1 in camp heaven, and 2 in Moshava".  

Anyway my love. I hope you had a great week and do again this week.  Love and miss you!

Until next time.

Love always, 
Ema


The Mighty Contributor

Monday, July 5, 2021

74 weeks

Dear Sonzee, 

Hi again! Another Monday about to be in the books.  It is funny when people ask me about the length of time it has been since you died, or say in a question form, "oh, it's been a year and a half or so?" I reply to the answer in weeks and mention that's how I count the time.  I do wonder if at some point I will round off to the nearest month, start to include the word year, or answer differently, but for now, there is some comfort in the weekly count.  Maybe it is because it is a big enough number to communicate how long it has been, but small enough that it feels like it hasn't been so long.  Counting in weeks also requires a second or two of time if someone wants to do the real math of how much time has really gone by.  People know it is more than a year, but it still falls within the realm of it being not long ago.  It is all a mind game at this point, so I really have no good answer to the why.

Meena and Noam have been in camp for a week now.  They both seem to be having a good time.  Meena is now in G3 and Noam in the Camp House.  Meena was once in his room, so it makes me smile that he is following in her path.  I will always wish we could have found a summer camp for you.  Nothing ever panned out, and sometimes it makes me angry that no camp had the skill sets to take you, but I am thankful you and I got to shop until we dropped and spend our time hanging out.  I think back to the camp who told us that you were too complex, but maybe next year. I wonder what they expected to change in a year as if some miracle was going to occur that would remove your seizures and make you walk. I mean, that supposedly is the hope that many of the CDKL5 community pray for but as a camp, I think that was a little bit off the mark as words of rejection.  The truth is, we probably weren't even going to send you unless we buttered up Nurse Paige to spend the summer with us, but I wanted to be the one to reject them.  And also, we never got to see the next year, so there is the really angry part of me that wants to call them up and tell them it was their fault that you never got to experience a camp setting and now you never will.  The small bit of rationale ema that remains knows not to be mad at them because if they couldn't care for you I am grateful they were able to admit it.

Laeya and Tzvi appear to be having a great time.  Your brother has a knack for avoiding as many pictures as possible.  Aba and I have developed some mad skills being able to find him in the background regardless of his attempts.  He also hasn't sent us any messages complaining, which we all know he would if he needed to.  Your sister is all smiles, all the time, and I am just so happy for her and this experience.  I LOVE that she is having such a great time with her summer friends.  In a pre-covid world, we would be visiting them in a week, but due to the closed-off campus, we are not going to be able to.  After their 4th corona test, the camp announced last week they are 100% corona free so they removed their mask mandates while around other bunks and are back to a more "normal" camp experience. That makes me even happier for their experience.  

Uncle and Hay-Hay came to spend July 4th with us.  Remember when Uncle would sing your beat-bo and bow-wow songs and when he would lay on the floor next to you?  We instead introduced him to the chicken nugget and chicken wing songs, he will be sure to thank us when those pop into his head during a work meeting.  It was a semi-tough day yesterday, so naturally, besides Meena and Noam wearing some red, white, and blue, there was no matching outfitting going on or anything.  Facebook memories made me smile but also broke my heart.  I hope you matched your friends with outfits and wore a cute bow or headband!

Anyway my love.  Missing you like crazy!

Until next time.

Love, 
Ema

The Mighty Contributor

Sunday, July 4, 2021

1 year 5 months


Dear Sonzee, 

It has been another month (and one day really), and tomorrow marks the 74th week.  I don't really like it when the milestone week and month dates are so close together.  In a sense, it makes things more challenging for me.  I think it is because it requires a lot of reflection of my emotions within a short period of time and that is really draining and horribly painful for me.  The weekly posts are rough as it is, but to reflect on another month that I had to balance life without you is something that just becomes progressively difficult. 

This month reiterated how year 2 continues to be more challenging than year 1.  This month solidified the accuracy of my "fantasy fears" as I was right at just how painful revisiting a life without you that we once had with you can be.  This month I can really see how much of me was taken with the end of your life.  The shell of me still remains, there are still remnants of a person I once was, but the new me is nowhere near the same.  I am okay with that, I just wish everyone else truly could accept that things won't ever be the same.  

Auntie A painted you your monthly rock this time.  She placed it next to the others and also gave you the July 4th rock I painted before we left.  I have a month left to decide what soapstone animal will be placed on the top of your book.  It is hard to believe next month will mark another 6 month period that will have passed.  It will be an entire 18 months.  It takes me back to a time I asked the designer of an Etsy store to customize an "18 months" shirt for you because we never knew how many milestone dates and birthdays we would get with you and I wanted to celebrate it in case you didn't celebrate your 2nd birthday.  We only ended up with 4 true birthdays...I am thankful I celebrated the 1/2 one as well.

This month taught me that I can decipher between your siblings' being away and your absence.  It may sound crazy, but a month ago the idea of not being able to communicate with them in our typical manner sent me into a tailspin.  It was similar to reading all the parenting books before Laeya was born, it made me confused and anxious because I couldn't understand a breastfeeding schedule when I didn't have a child to apply the practice with.  It has been 11 days and I can survive with modern-day technology bringing me pictures and videos, one-way emails, and staff who are able and willing to keep me updated if needed.  If only there was some system in place for you and me.  Instead, I have purchased every book under the sun to try and make sure I am to receiving signs from you.  I feel like I need as much assistance in this area as I can have.  I am guessing this will be a lifelong struggle for me.

Well, baby girl, I am off to write your next letter.  I hope this month was easier for you than for me!  I pray you to continue to be free of pain and revel in your freedom!  Stay safe and have fun!

Until next time.

Love always,
Ema



The Mighty Contributor

Monday, June 28, 2021

73 weeks

Dear Sonzee, 

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

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

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

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

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

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

Until next time.

Love always,
Ema


The Mighty Contributor



Tuesday, June 22, 2021

72 weeks

Dear Sonzee, 

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

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

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

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

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

Love you and miss you!

Until next time.

Love always,
Ema

The Mighty Contributor

Monday, June 14, 2021

71 weeks

Dear Sonzee, 

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

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

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

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

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

Until next time, 

Love always, 
Ema


The Mighty Contributor

Monday, June 7, 2021

70 weeks

Dear Sonzee, 

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

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

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

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

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

Anyway my love.

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

Until next time.

Love always,
Ema


The Mighty Contributor

Sunday, June 6, 2021

When?

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

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

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

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


The Mighty Contributor

Thursday, June 3, 2021

1 year 4 months


Dear Sonzee, 

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

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

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

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

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

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

Until next time my love!

Love always, 
Ema


The Mighty Contributor

Monday, May 31, 2021

69 weeks

Dear Sonzee, 

Today is the last day of May and it also happens to mark the 69th Monday you have been away from us.  This last week was the first official week of summer break for me.  I find myself forgetting what it is that I did the first 3 days, but it was an attempt to get some things done around the house, copious amounts of laundry, and chauffeuring. I find it hard to believe we leave for the summer in less than 3 weeks and there is still so much for me to do. 

On Thursday, aba and I snuck away by ourselves with Mr. Dustin and Mrs. Penny.  I don't think it will ever make sense why it took you and Harper's lives and deaths for us to be part of one another lives, but here we are.  It is such a unique bond we have, and honestly, we had one of our best times away together.  I don't think I have laughed so much since you died, and there was no guilt around them.  In our true Mrs. Penny and ema fashion, we had a lot of dark humor and it was nice to be able to truly feel like myself around her and Mr. Dustin.

Your siblings were able to stay at home and not be sent out to various friends because savta came to watch them with cousin Jessica and her friend.  Everyone had a great time, and Meena even mastered her back handspring (although she has yet to do it for me in person since we came home, but I have a video of proof). Jessica left yesterday and Savta will be leaving tomorrow.  

Not quite sure how time continues to move on by but every week I find it more challenging to process your absence and the distance that seems to build from the last time you were in my arms.  I eagerly await a visit from you in my dreams. I hope you are doing well, having a great time, and staying safe wherever you are.

I miss you so much!

Until next time!

Love always, 
Ema


The Mighty Contributor

Monday, May 24, 2021

68 weeks

Dear Sonzee, 

We have almost finished with another Monday again.  Not quite sure how the days continue to fly by.  I also do not understand how I have so much to do and still no time to manage to get it all done.  This last week has been filled with more after-school activities than I can even process.  Between Meena and her gymnastics and Tzvi and his hockey, I. am. spent.  That is not even including the regularly scheduled ninja for Laeya and Noam and all of their swim classes.  On top of it all, I am trying to do the makeup sessions, which is just so much.  

Thursday was the last day of FBC for the summer.  I managed to survive two preschool graduations (not without tears).  The first one drove me into my office to have a good cry alone and the second one I was able to hide behind the camera I was holding for the online kiddos.  (That was Miss Tara's idea thinking if I was distracted with a job it might help, and it did until my mind had a moment to think, and bam).  Thankfully I have mastered my ability to swallow the tears just as quickly as they occur so few if any people actually noticed.  I did myself a favor and skipped the 3rd one that would have been on your campus.  I never attended preschool graduation there before, this year was not going to be my first. 

Your brother had hockey tryouts for the 2021-2022 season that will begin in August.  What an emotional experience it always is, but this year felt more intense. He earned himself a spot on one of the best 10U teams in the valley. We are so proud, and the boots this year will be purple sequin (if I can find them).  You would have rocked them.  Also, this is the team with the purple blankets!  You would have looked adorable covered in that as well.  My only concern for myself is that his home ice is the place with the wheelchair elevator lift you and your sisters used to ride.  It was the one we used to have to wait for the key to open it up.  I have been there since and found myself staring in that direction in a daydream.  I find myself torn thinking of how maybe one day it won't bother me while simultaneously scared for that day to come.

Meena turned 8 yesterday!  We went to a place that had trampolines, scooters, and all these parkour types of activities.  Meena had her friends, Tzvi and Laeya were with Momo, and Ziva and Noam were both trying to find their place, and I said how they needed a (mobile) Sonzee to bridge the gap.  The three of you would have probably been quite the trio.  Although, honestly I do wonder if maybe you and Mo would have actually been closer than Mo and Meena and if the dynamic would have somehow been altered in general.  We won't ever know, but I do wonder.  

Anyway my love, sorry this letter is being sent so late in the day.

I love and miss you and hope you are doing well, having fun, and staying healthy!

Until next time.

Love always, 
Ema

The Mighty Contributor

Tuesday, May 18, 2021

67 weeks

Dear Sonzee, 

It is mind-boggling it has been 67 weeks (and one day).  I am sorry I am a day late, it was Shavuot and time got away from me Sunday so I couldn't pre-write my letter to you.  I am unsure if I am more astonished 67 Mondays have passed without you here or that I have written you 67 unanswered letters.  This last week Meena decided to try out for the competition team at gymnastics.  She made it on to the developmental team.  She is not exactly thrilled that she is with younger kiddos, but I remind her she literally started her journey 7 weeks ago (this week) and they have been practicing for years.  They told her she is advanced on the floor and beam, but that her bar skills need improvement due to lack of strength. So, naturally, I have downloaded conditioning charts and I am fairly certain in no time she will be moving on through the developmental team groups.  In fact, while at Bear Pines this weekend she taught herself a back handspring and backflip on the trampoline.  (If you could spot her every time she tries these you know I would be forever grateful).

On Sunday we all came to visit you with Tzvi's hockey trophy. I am sure you knew because we felt your winds.  We took our family picture with your gravestone and gave an extra shoutout for all of your help this season helping your brother and his team with this achievement.  If it isn't too much this week is his tryout for next season, we are really uncertain which of 3 teams will be his best fit, so we will see what gets taken off the table on its own before it becomes his choice.  These things are always so stressful for me.  I know whatever happens will be what is best and meant to be, but it is just so hard watching your siblings feel disappointed.

This Sunday started "birthday week" for Meena.  I don't understand how she will be 8. I still remember dragging her all around town to all of your therapies watching Frozen a dozen and one times when she was hardly 2.  I miss that I would have an 11, 9, 8, 6, and 3.5 years old.  I don't know how you are 6, so everyone else aging is really challenging for me.  On the same note, Tzvi started his "Ten weeks until ten".  His first gift was a 4 pack of hockey stick holders for his bedroom.  He is going to have a hockey room transformation.  I don't really understand all of this aging business, to be honest.

We leave for NY in a month and 2 days.  I may bring Mermie with me, even though I know it isn't a replacement for you.  It just feels like I am always leaving something somewhere when it is just the fact that you are not with us.  Today was Yizkor again.  I was caught off guard when I remembered Sunday night.  I am sorry I didn't have my red candle for you.  I won't make that mistake again, but thankfully Morah Zupnick had a pretty holder for a white candle for you.  Maybe it was because I was caught off guard but the last 36 hours I felt like I fought back tears more than I had this last week.  So many conversations brought lumps into my throat.  Ones I have had plenty of times, but for some reason or another were harder to have.  It is so random how grief happens.  I think that is something I accept but am still surprised by.  Maybe grief finds it comical to change things up, to make sure we don't get too complacent and that we remain on our toes?  Who knows?

Anyway my love. I hope you are being safe and having a blast!

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, May 10, 2021

66 weeks

Dear Sonzee, 

Another week down, but an eternity to go.  This past week, I finally found the time to decorate some more rocks for you, and finally added them to your home.  I won't lie, I find it increasingly irritating now when I walk the rows and see how many people are "flattering" me by painting their loved ones' rocks.  My personal feeling at this point is if it isn't for a child, no adult requires painted rocks.  Maybe that's harsh? Maybe it's unfair? Either way, I don't particularly care, I just want everyone to remove the painted rocks that were only painted after seeing all of yours. I get it, I know it is a great idea, but it was my thing for you and now it just feels like it is everywhere and it takes away the special meaning it had for you, for us. I can admit I am bitter and annoyed, but I won't apologize for it. 

We have started to pack for camp.  I know it is 6 weeks away, but I wanted to make sure we had everything all together and organized.  It is the first time since you have been gone that I am actually preparing for something more than an hour before.  I don't know how that makes me feel.  I know I am so excited for your siblings but also a little nervous for them. For myself, I am really on edge.  Naturally, when it came time to prepare for summer it was the routine thing to just rent the same place we have always stayed in, the one you lived in every summer of your life except the one when you were first born because we were afraid to be too far from a children's hospital.  Now the reality that I will be staring at the walls, and looking around the house at all the places you did various things, is setting in.  Summer is our time together, no nurses, just Sonzee and ema days (and for a few years we shared it with Noam).  This summer everyone will be in camp, and it would be back to just us, so now, it will be just me.  I am calling it the "summer of Randi", but really it is going to be more the summer of feeling and being lost.  I can think of all the intentions I have, similar to the ones I used to have for you during the summer, that I most likely won't achieve.  Maybe that is for the best? I mean I haven't really had any time to really grieve alone or figure out life since right after you died the school closed, and your siblings came home, then I went back to work virtually and even worked ESY last year so never had an actual break. I am dreading the unknown, but my life with you prepared me for that, so maybe I will find myself better off than I imagine? 

Yesterday was mother's day.  Year #2 of being tough.  My heart was breaking as I opened everyone's custom gifts for me because it meant I wouldn't have one from you, but somehow you and your twin girl knew what I needed and found a way to make it happen.  I am fairly certain I gave Niagra Falls a run for its money, but I am just still speechless.  I feel it just solidified to me that you and Laeya's bond is unbreakable, and for that, I am beyond thankful. 

Did I mention last week that Nurse Paige came over for breakfast? We all loved seeing her. We weren't sure if Noam would remember her, but she asked her where you were.  You and nurse Paige were one and the same to him, really to all of us.  A girl and her shadow.  It was almost like old times, except her reason for walking through the door wasn't around so she had to settle for the rest of us.  Don't worry, I made her a couple of my signature coffees and an awesome breakfast sandwich.  I look forward to her coming back.

Anyway my love.  Missing you as always. Stay healthy and safe.

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, May 3, 2021

65 weeks (15 months)


Dear Sonzee, 

Today is a double whammy day.  It not only marks another week that has gone by but another month that has come and gone without you here.  Who would have thought that the pain in my heart could grow?  It is similar to when someone becomes a new parent and doesn't quite understand how they can now love someone so much and the love towards them only grows.  15 months in and my heart feels like each day it shatters a little more and it hurts a little more. I won't be so naive to think it will ever get better, but it fascinates me nonetheless that it can continue to do all those things.  It almost places a value on the amount of love...it really is infinite to an exponential form, which isn't at all making this journey any easier knowing that will translate into emotions of grief.

This month of May wraps up another school year for your friends at FBC.  I am planning on attending two of the graduations, we will see how well my powers of out-of-body experience work.  I know I would never be required to attend, but I want to be there. I just don't know if my desire to celebrate their achievements will win out on my ability to watch other children do what you weren't able to do.  While we never did find out what your school placement for this year would have been, the assumption is you would have stayed at FBC or participated in the program in some way half the day while also attending PHA.  So, it completely takes my breath away that in another 17 days you would be finishing up Kindergarten.  Sometimes I have to try really hard to remind myself that you were going to be a first-grader this fall.  I wonder if there will ever be a time your age won't confuse me.  I still wonder how you have been gone only 15 months and you have aged 2 years.  You were 4 when we said our goodbyes and you would be 6 right now...my brain fails to register that without an immense amount of effort.

Last night we had a camp meeting for your older siblings.  It left me in quite a tizzy being all sorts of overwhelmed with the reality that I will not have them around for an entire month and there will be no visiting day.  A quick email today had them reaching out to me by phone to try and comfort me.  Who knew that my brain would take a summer overnight experience and equate it to your absence?!  I have learned there is just no reasoning with grief so I am thankful for those who hold my hand and walk with me through it.  While there will be no way for me to give them hugs, there will be a way to speak to them whenever I need to. I wish HaShem could work something like that out for me and you.  65 weeks and I swear I feel like you are only going further up into heaven, further out of reach, further out of my familiarity.  I wonder if I were to see you if I would even know you.  Would I walk by you? What would you look like now?  I feel like the parts of you I once knew don't even exist in the world you are part of now.  

I hope wherever you are that you are surrounded by comfort and maybe even more love than you had here if that is even possible.  I hope you at least come and check on us and smile and then go on your way.  Maybe you were the hummingbird lingering outside of bubbie and pop-pop's today. (PS: They got a little puppy, his name is Maximilian, he is currently 3lbs. You would have loved his snuggles and he would have never known what was coming when you would've inevitably kicked him off of you.)

Anyway my love.  Nothing is the same here.  15 months feels like forever, and 65 Mondays seem incomprehensible.  

Until next time.

Love always and forever, 
Ema


The Mighty Contributor

Sunday, May 2, 2021

When it's dark...

Tonight was the big kids camp meeting for summer COVID19 protocols and guidelines.  The meeting itself lasted an hour, but the immense feeling of anxiety and fear are still going for over four.  Maybe it is because today is the 2nd day into a new month, and history states new months are my downfall.  Maybe it is because today is officially bereaved mother's day.  Maybe it is because tomorrow marks 15 months, the 65th Monday since she was last here.  Maybe it is what would have happened during the same meeting if Sonzee hadn't died and it was going to be year one for her two oldest siblings to be going away from me for a month and her one older one for 8 days. Regardless, here I am.

The meeting explained all the testing and conservative procedures that will be occurring.  I honestly don't mind them, they seem fair and appropriate, and will hopefully result in a minimal to no corona exposure experience for all of the thousands of kids that will be attending.  What actually began the tailspin in my mind were the words "no visiting day".  I anticipated this would be the case. I assumed they would want to limit the exposure of the virus into the camp, but hearing the words made my eyes begin to fill with tears. But why?!  I sat listening to the guidelines continue to be spoken and continued to take notes while simultaneously texting a friend to explain everything I was being told.

Almost an hour from the moment I wrote the first text my brain shed some insight into my panic.  It isn't the corona protocol, it isn't even really the no visiting day.  It is the fact that my children are going away and I can't talk to them and they can't talk to me, and my brain told me not to worry because 12 days in I would be rewarded with a hug.  Instead, now it will be an entire month...and I have to remind my brain that this time it isn't because they are joining their sister (heaven forbid).  As of tomorrow, 65 Monday's ago I kissed and said goodbye to Sonzee and that was the last time I saw her, the last time I could hold her and talk to her.  While the rational part of my brain knows it will be seeing pictures of her siblings daily and it knows they will be having a fantastic summer experience, the grief-stricken bereaved mother of theirs is trying to separate out the reasons for their absence and emphasize it isn't permanent, and they will be coming home.  It isn't something that is even easy to make sense to someone who hasn't buried a child.  I can't 100% say it makes any sense, but in grief, rational doesn't exactly have a track record of a first-place win.  

When the idea of sleep away camp first entered my mind I had five living children.  The tears that filled my eyes were a mixture of excitement and remembrance of my childhood summers away from home.  Then Sonzee died, corona happened, and this journey began on quite the detour with splashes of a previous life mixed in with life after.  Every day I try my best to pretend that the loss of a child isn't living through trauma.  I try to remind myself that nothing is up to me, it is all out of my control, and like the quote sitting on my desk staring me in the face, I feel like the only thing I can do is "when it's dark look for the stars" because otherwise, the black sky is just all too much.

The Mighty Contributor