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 mind.  The 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

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

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

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

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