2021

Two days ago while in the shower, the words for this blog post began to fill my mind.  The first complete year spent as a physical family of 6, as a parent of 4 physically present children, as a "once special needs parent". As with most years, it was a year filled with many different firsts.

2021 was the first year since 2015 that I didn't ever live in a room on the 8th floor of Phoenix Children's Hospital.  It was the first year I learned just how challenging living in your grief can actually be. It was the year I woke up from the grief fog and fought the world of denial.  If I am being honest, I will enter into 2022 still not mastering the art of accepting and still struggling to allow myself to sit in my grief.

2021 was the year I struggled to balance the parent I once was, with the parent I am not and give myself grace because I won't ever be the parent I expected myself to be.  I spent a lot of 2021 learning to give myself grace in general, allowing myself to acknowledge that being a grieving mother isn't easy and to truly believe it is okay if I own that and fall apart. 

2021 was the year I began to truly listen to my body and my mind and make my limits known to others when necessary.  It was the first year I stop caring as much about other peoples' opinions and at times even expressed that their lives clearly didn't have enough challenges if they were so focused on the frivolous parts of life. Maybe that wasn't the most positive part of 2021, but on the other hand, it is extremely freeing to be able to file so many items under someone elses' "personal problem".

2021 was the year that Sonzee's siblings started to figure out the role she would play in their lives.  Some of them mention her and some of them don't, and I spent 2021 doing my best to accept that everyone grieves differently, and telling myself that it is ok.  It was the year that I wasn't sure how much her little brother remembered of her, but I learned he misses her a lot.

2021 taught me that the phrase "it's just stuff", while true, is still a challenge to accept in both heart and mind. Memories thankfully remain vivid in my mind, and while I fear the day they might no longer, for now, I continue to play them on a continuous repetitive playlist.  

2021 was a year I experienced every emotion of grief and then some.  Continuously.  In random order.  Over and over again.  2021 is the year I started to realize that being a grieving mom is really never going to hurt any less than it did the day it started.  The experiences that trigger the tremendous downfalls will change, but the love is far too great that the pain won't ever dull. That is okay.

2021 was the year that I spent the first 7 months posting throwback pictures of Sonzee's life only to realize one day it was far too painful to look at a single picture of her.  It was the year where I started to experience this grief lethargy that made doing typical parenting and daily tasks feel daunting and nearly impossible.  There is a constant lack of energy that makes anything Sonzee related almost impossible to do.  It was the year I stopped being able to paint as many rocks for her, to visit her grave, and in general to deal with anything related to her life.

2021 was the year that forced me back into a sort of reality with the start of the reopening of the world that essentially closed simultaneously with her death.  Then much like the journey of grief, the inconsistency and unknown path of where life with Covid will continue to take us in 2022, it is sure to introduce me to new challenges, new realities, and new acceptances.  Much like last year's uncertainty of how to celebrate the last year that we had her alive, I am unsure how to honor the first entire year without her ever being part of it.  As we head into 2022, I know she will grace me with her Sonzee bear essence and hopefully, it will be enough to carry me through another 52 weeks of life without her.

Last letter of 2021

Dear Sonzee, 

Today is the last day of a year you never were physically part of.  It makes my heart physically ache to process that reality.  An entire year you never took part in.  I ask myself often how time continues to move on without you part of it. I find myself trying to process your life and that you were actually part of it physically at one point when I see your picture on my coffee mugs in the morning or on the printed picture pillows.  

I find physical reminders of you around, like when I cleaned out my bag that I used to carry with me to your therapies that had your picture on it, and I found a lavender vile for your labs and a medicine syringe.  We have your pacifiers and glasses hanging by the front door of the apartment, hard to believe that there was a time you would have those items on your person 24/7.  So much of your physical presence is gone from the house, but the items that made you, you, those are still here and probably will be for my forever.

2021 will be the last full year we will ever be owners of the house you (and all of your siblings) were brought home from the hospital to. I once thought that would be our forever home, but honestly, without you and all of your stuff there, it is just impossible to live in that space.  I haven't decided if I will bring a tissue box or two and sit on the floor of what was once the room you lived and died in one last time, or just never go back inside.  I can't decide which decision will be added to the list of the only true regret I have (which is getting mad at Aunty A for taking pictures of you on February 3, I should have never said anything, and I wish she wouldn't have listened to me). We will soon be listing the house for sale and I am sure the day we are under contract will be an emotional day as it finalizes that everything, besides my minivan, that we own in our life you have never physically in (ps: aba keeps trying to get me to agree to sell that too).

As we enter into 2022 I am scared of all of the dates ahead.  In just 10 days it will be your 2nd deathaversary on the Jewish calendar.  I am not ready. In 24 days would have been your 7th birthday on the Jewish calendar.  How? You are still 4.  In a month and 3 days, it will be your 2nd deathaversary on the secular calendar, and in a month and 11 days you would be turning 7 on the secular calendar.  4 dates to signify such meaningful moments of your life and death, but 4 dates that make the next 6 weeks nearly impossible for me to remain above water.  Please help me make it through.  

If I can make any requests, please try to visit this year.  It has been close to 2 years and you still must not think I am ready, but just let me know you are doing amazing and are loving whatever you are up to.  Let me know someone is looking after you and helping you if you are in need.  I am doing my best to put my faith into trusting the journey you are sending me on, but your mother wouldn't be living up to the Jewish mother stereotype if she didn't try to guilt you into a visit.  Love and miss you baby girl.

Until next time.

Love always, 

Ema  

99 weeks

Dear Sonzee, 

Today, in 20 minutes, marks 99 weeks.  How fitting that the last Monday of 2021 falls out on the last double-digit week of your absence.  I guess you wanted to make 2022 easy math for me.  99 weeks since I last gave you a cuddle and walked you out of our physical life forever.  I am not looking forward to reliving the history that unfolded 2 years ago over the next 6 weeks.  I find it fascinating how vivid all of the memories are.  What is even more fascinating is how the pain worsens.  Maybe because while I lived it I was completely numb, knowing "I would have the rest of my life to process it".  I can't remember the exact number of times I said that to people from January 24 until February 3, 2020.

This week I began to unpack the boxes into your siblings' rooms in the new house.  Room #1 boxes are all yours, they are still piled in the room that will eventually be the extension of the kitchen.  I cried while I cleaned your Rifton chair.  It was full of dust.  I am not quite sure what brought the tears, but then as I tried to figure it out while I cleaned it, they got worse.  Maybe it is the fact that I was cleaning a chair you won't ever be sitting in again?  Maybe it is simply because it is something of yours.  

While I was unpacking boxes from Noam's room I found your last package of Huggies diapers.  I was unsure if they would find their way back to the keep section since they were on the "Zaila trash" sheet.  I am so thankful of all the mistakes that ended up occurring, those damn diapers found their way back to me.  Randomly I will find medicine syringes or the viles that we used when we drew your blood.  I never know if I should toss or keep.  

Your pink convertible is with all of your siblings' cars on the side of the house.  Another item I just can't part with.  We moved your front porch swing to the new house.  I can already envision sitting on it and crying, but I know mixed in there will be smiles watching your siblings play basketball or playing in the front yard, knowing you spent so much time on the same cushion. 

I know I have to bring myself to open your boxes because they contain the many pictures and items that will be put up in the hallway.  I will keep that task for when I feel compelled to do it, probably when your energy surrounds me enough to just do it.

Aunt Shuly and Uncle Russell and the gang stopped by for a quick visit on their way up to Bear Pines motzei Shabbas.  It was nice to see them.  

Anyway baby girl.  I hope you enjoy your last week of 2021 wherever you are.  I love you and miss you!

Until next time.

Love always, 

Ema

98 weeks

Dear Sonzee, 

There is a lot that happened over the last 7 days.  For starters, we closed on a new house.  The waves of excitement that occur have been followed by waves of tears and an extra dose of heartache.  My emotions bounce back and forth like a ball during a ping pong match.  I am overall extremely content with where this journey is taking us, but the fact that you won't ever physically enter the house crushes me.  The fact that your swim spa won't be coming hangs over me like a dark shadow.  While I know where the saved items of yours are going, the fact that you don't have your own room hurts my heart.  As the truck delivered all of what wasn't ruined during the flood I looked inside the truck for your stuff.  I knew it wasn't on the "keep" list, but I hoped it might have been considered damaged but still tucked away inside.  It was not.  Well except for that horrible chair that none of your nurses ever complained about, despite it being a horrible chair, that somehow managed to sneak itself onto the truck.  I chuckled when I saw it, I know you left that for us.  It will go into Noam's room.

Your brother had a lot of hockey this last week (I know what is new?!).  They are consistently inconsistent, so I never know what the games will bring.  They win some and lose some, but occasionally nurse Paige comes to watch and you know how I love to dress in all my hockey mom gear, so I am not complaining.  Laeya finished her last bat-mitzvah class she and I were doing together.  I cannot believe it is a month away.  I cannot believe on the Hebrew calendar her birthday and your yahrtzeit are just a couple of weeks away.  I'd ask how, but I know the answer, it's just life. 

This last week was the last before I started winter break.  I cannot believe we are halfway through the year.  I really shouldn't be surprised, after all, life.  Last week Meena managed to break her expander.  I have zero idea how she manages to do what one would assume is impossible, but leave it to her to have performed such magic.  She is back to patching her eyes again.  I bet you would have enjoyed not patching alone.  

This last week someone in the community passed away, but I couldn't bring myself to attend the funeral because it was under the same pavilion as yours.  I still have flashbacks to the service.  I can still feel how surreal it was that it was your funeral.  I can still remember staring at the fan blades just spinning around.  I don't remember much of being there, but some images still replay in my mind.  I just couldn't sit there unoccupied with my thoughts.  Aba went, he said the person pulled in about the same numbers as you.  He then visited you because people asked him to show them where you were located.

It is only my second round of this time of year without you, but I am already dreading the next 7 weeks until after your English birthday.  I would say I hope it goes by quickly, but that would be a lie because that just means more time between us.

Anyway baby girl.  I know you are the puppet master of my life right now, so I will do my best to let you control the strings even though it isn't easy.  I know you are with us wherever we are and I can't wait to eventually move in (after we remodel the kitchen and a bathroom) and unpack whatever we have left of yours. 

I love you so much and miss you tons!

Until next time. 

Love always!

Ema

97 weeks

Dear Sonzee, 

Last week your monthly letter fell around the weekly letter time so I skipped my first weekly letter in what would have been 96 weeks.  I am back at it this week with having what feels like an eternity since I last wrote you.  It has only been another week, bringing us to just 3 away from 100 Mondays without you.  The Mondays will always continue to pass us by.

This last week brought us a lot of hockey and goals for your brother.  A busy week in general and it was topped off with Laeya and I flying to New Jersey for a bat-mitzvah of one of her camp friends.  We flew in and out within 24 hours, but it was well worth the travel to see her smothered in hugs and smiles from her friends when she walked out of the car.  She is already looking forward to their next reunion.

This last week brought us another week closer to your deathaversary. No offense, but it comes at the worst time.  Well, I suppose it could be argued that it isn't the worst time because of it being around Laeya's birthday and then bat-mitzvah, that it really could just be a good distraction?  But I am anticipating my emotions to be on overdrive because of it all.  Trying to honor you both on the same weekend without taking away from either of you is definitely a challenge.

This last week brought us more questions from Noam.  I find it fascinating as he grows older how his understanding of death unfolds, but then we find ourselves fielding bombs of questions.  It feels equivalent to being on a minefield, each question coming at us randomly in an attack and leaving us wounded when it's over.  This week he asked us when you were going to be fixed, he wasn't happy with the first answer that you weren't being fixed, so aba settled the conversation by saying that you would be fixed when Mashiach comes.  Noam asked us why you died this week.  I told him among other things that Hashem wanted you and he excitedly replied that HaShem would fix you and then you could come back.  After the water in the bathtub drained he asked where it went and I told him it went into the pipes in the ground, and then he asked if that was the same place where you were.  I am happy he asks the questions, I am often stumped with forming my answers, and my heart often breaks having to retell him in different ways you won't be coming back.  

At times it feels like I have to make all my answers up as I go with him.  I myself don't really understand why you had to die, I don't really know where you are, and I have no idea if you have been fixed or will ever come back even with Mashiach.  Maybe one day I will have all the answers, but at week 97, this is the best I can do.

Anyway my love.  I miss you a lot!

Be safe and have fun.

Please come and visit.

Until next time.

Love always, 

Ema

1 Year 10 Months

Dear Sonzee, 

Today marks one year, ten months, and two days.  I am sorry I didn't write to you on Friday, my brain didn't compute that it was already December 3.  It's hard to believe Saba has been gone for 2 years as of the 3rd, and that in just two months, your time will follow suit.  Oh, how I wish to know what you both have been up to over all of this time.

This month continued to be challenging.  I have done a really good job focusing on small increments of time passing me by, mainly by weeks.  Then this week I realized that as we get closer to February, it will be your 2nd anniversary.  Information I am well aware of when I process how much time has passed, but the reality that this is the 2nd time all these months have come and gone without you is just a lot for me to admit to my own brain.

This month brought me closure in some ways with me accepting that things are being orchestrated by you/Hashem.  Aba and I don't agree on which one of you is responsible, I say it is you, he says that your soul is so pure you are elevated to be with him and so it is one and the same.  Either way, I am allowing myself to acknowledge that everything has been divinely organized.  I realize that we need a fresh start with this whole moving forward concept and reality, so everything that you have done is making it so that is the case.

This month we said goodbye to Bianca.  I know that was part of your doing.  We know aba isn't at all upset over it, I am actually handling it really well.  I mean we buried you, so really an animal pales drastically in comparison.  I know she must be as happy as can be peeing all over piles of laundry and wherever the rainbow bridge took her.  I hope you were able to see her and Brucie.  I wonder if Brucie was thrilled to see her again?

This month brought me back to see your grave.  I still find it more challenging than it ever used to be, but I have been able to do it.  

This month I spoke about you more, and have shared you with others more often.  I did answer the question yesterday of how many children with "4", but that was honestly because I didn't feel this person should be privy to a detailed explanation.  A friend of mine actually said, "she has 4 here", and I quickly said "yup", and the person didn't catch the "here", and so it worked out beautifully.

This month I listened to my inner needs and told work I need to pull back a few hours.  I need to honor my grief and allow myself to sit with it and not keep running.  This month I have felt more blah, but also have acknowledged that that is ok.  This is my normal, this is life, this is what it is.  There is no escaping the weight and reality of you being gone, and that is ok.  It's hard, it's painful, but grieving you is just my love for you.

This month brought us bringing over your pacifier and glasses holder to the apartment as well as the two removable picture posters that have you on them. They are the only things on the walls in the apartment.  I was able to send your special tomato EIO pushchair to a CDKL5 sister of yours this month.  I was able to pack your Firefly GoTo seat to bring to East Valley FBC this week.  This month is allowing me to continue moving forward in a different way than clinging onto items that are just collecting dust.

Anyway baby girl.  Every month that passes without you here is another month you have taught me more valuable life lessons and proven to me just how strong I am.  This month was just one of the many more that I will spend in this life without having you to hold and kiss.  This month brings us just 2 months away from your English deathaversary, and only a month and 5 days from your Hebrew one.  

Until next time little bear!

Love always, 

Ema

95 weeks

Dear Sonzee, 

Today marks 95 weeks.  That is a lot of weeks.  I am definitely feeling the distance between us and the life we lived with you here.  I will admit I feel like I am allowing myself to feel your spiritual presence more, but sometimes I wonder how much of that might be made up.  I guess I won't ever know, so maybe even if it is simply pretending, that is okay.

This last week was brutal.  I failed to acknowledge just how awful each holiday season will be without you.  I anticipate the challenge, but then actually living it in some ways is worse.  The only way I know to describe it is having one of those days where you are just angry over everything and nothing but you can't figure out why or what's causing your feelings.  In my case, I know deep down it is grief...I just wish I could keep it locked away deep down for the sake of myself and everyone around me.

I feel like I was not actually present anywhere I went the last week, including work.  My body was physically there, but mentally it has been on a distant planet.  I am having such a challenge focusing and wanting to do much of anything, it has just been really hard.

Thanksgiving did not help at all.  It was a fine day, I actually brought you a bunch of rocks, but not having you around really stinks. I was already off-kilter because of Thanksgiving and then Tzvi had his hockey tournament with 6am puck drops.  For 95 weeks I have essentially waited for someone to push me so far over the ledge I blurt out that you died and they should really get a grasp on what matters in life, and it happened.  I don't know what I expected to feel when it eventually happened in a heated manner, but I can tell you that crying in a parking lot in Gilbert into the arms of another hockey mom is not what I envisioned, but that's exactly how it played out.

I found myself unable to shake the sadness and anger and wound up sitting back on your bench after going home for a second and then leaving in my slippers.  I guess it was needed.  Your sister happened to have left her phone on the back ledge of your stone the day before, so I am guessing you knew what was going to happen and that I would be returning.

By Shabbas I felt better, but not overly thrilled knowing that it would be your brother's 4th birthday on Sunday.  Seriously, who planned all these things into one weekend?  I had little desire to do anything and the birthday box is still in the garage at "Phoenix house".  I decorated his door, put together his nerf scooter, and called it a day.  I felt guilty.  I felt like I needed to smack myself and pull myself together because it isn't fair to him, so I eventually did.  I texted a friend from grief group and being that she's been in this position before, she told me that his actual birthday wouldn't be as awful as the day before.  I trusted her and when I woke up on Sunday, she was 100% correct.

It is still a challenge for me to comprehend that he is now 4.  It makes me question where time has gone despite knowing that 95 weeks have passed.  Despite knowing that you would be turning 7 in 2 months. Despite how obvious it is that life is moving forward without you here.  I am trying my best to follow the path that I know you are laying out for all of us, but know that there is a huge part of me that wants to embrace my inner toddler and just throw myself on the floor in a full-blown tantrum because I just don't want to move forward.

We went to "Phoenix house" and packed up the playroom, the final room to be emptied so we can have it repainted.  Your bedroom doors are freshly painted and no longer contain the very last medicines or times we gave them to you on them.  They no longer list your last appointments or the last time we had your tubes changed.  They are just white, with no evidence of the purpose they once served.  I am a mixture of numbness and wanting to cry.  I suppose that describes me on a typical day in general.

Anyway baby girl. I hope you had a great Thanksgiving in Gan Eden.  I hope you are being smart and safe and doing everything you want to do!  I hope you know how missed and loved you are!

Until next time.

Love always, 

Ema

94 weeks 10 hours and 23 minutes

Dear Sonzee, 

I met another Monday without you here.  Somehow it came, and then it went, like the 93 others before.  Just like last week and the one before, I still wonder how time continues to pass me by.  I wonder how we have almost completed our second set of holidays without you here.  I wonder how next week I will be making another monthly rock.  I wonder how any of this has happened.

This week someone joined two of the CDKL5 support groups I am still an admin of.  One of them is the one that Miss Penny started, Life after CDKL5.  The person stated they were an aunt of a newly diagnosed child.  They also joined the Extended family CDKL5 group that I began to keep the peace in the parent group.  I sent her a message after I deleted her request and explained the group was only for those who have buried a child who had been diagnosed with CDKL5.  She casually replied she was not aware children diagnosed with CDKL5 could die and she just wanted to support her niece. (Must be nice to live in that bubble, although I popped it rather quickly when I mentioned that unfortunately yes they do and you died almost 2 years ago).  There are definitely parts of your old ema that left with you.  Like the part that feels the need to coddle anyone in the world of CDKL5 or the part that gives a care about taking any sense of naivety away from someone in an unrealistic lala land of CDKL5 rainbows and butterflies. Hashem help me to those who mention the word hope and cure in relation to CDKL5.  I can't tell you how many people I have snoozed or simply removed off of my friends' list lately.  

Sorry, I have completely digressed. 

This week we had a birthday party for Noam.  He will be four in just 6 days.  I don't know how I am going to deal with that.  I mean I do, because I have to, just like every other day since your death.  But you are still 4, you will always be 4, forever, but your brother will now also be 4, and (G-d willing) he will one day be 5...but you won't.  Mrs. Zupnick did most of the planning and pretty much everything (except I did make Auntie A do the invitation). It was a joint party with Nosson.  It was so cute because he has spent the last 6 months asking about his birthday and he isn't really processing it is about to finally be here.  He will spend the actual day at your brother's hockey tournament (maybe you could help him with a championship win this weekend?!) and then it will be the first night of Chanukah.

This week there were sadly a whole bunch of new parents in grief group.  It is always bitter-sweet to have new parents come.  Horrible for the circumstances, nice to have others who get life now.  We went yesterday to the park and made disposable boats and sent them off in your honor with flower petals inside.  We were given a new blanket, it is red, black, and white, and perfect for your honor.  We made a circle and then they read your name off a card, a woman next to me wore a "White Cane Walk 2021" shirt from FBC and reached out to my arm when your name was read, I wish I could place who she was and who her child was.

Your sisters received their scans for their expanders that will be placed next week.  They keep complaining about the lack of candy they will be able to have.  As with many other topics, I tell them to file it under personal problem. Instead, the Moonzie bear continues to "forget" that she can't eat the candy and she has lost two spacers already and had to have them replaced.  She is driving me completely crazy with that! It is going to be a lengthy 10 months with her for sure. 

Anyway my love. I miss you so much!  I hope you are safe and well.  I hope you will come and visit me soon!

Until next time.

Love always, 

Ema

93 weeks and 1.75 days

Dear Sonzee, 

I am sorry I missed writing to you on Monday.  It just seems like time is completely impossible to hold onto.  This last week was another that flew by.  On Thursday your siblings as well as myself had off of work/school and all day I thought it was Sunday and didn't understand how I was going to be writing another weekly letter.  Then I realized it felt so quick because it had not actually been an entire week since my last letter to you. 

This last week I have just felt completely blah and not really wanting to do much of anything, including going to work.  Since it isn't an option to just stay home, I force myself to show up, but while I am there physically, mentally I have no idea where exactly I am.  I suppose this is one of those times it is good that I am working and that I have a reason to leave the house because if not I am pretty sure wallowing in self-pity and sleeping all day would be my only agenda items. Some mornings though I think to myself this is exactly what I was afraid of happening if/when I went back to work, so maybe it wasn't a good idea?  Maybe I should quit so I can just be blah on my own without it negatively impacting anyone or the environment?  Grief sucks!  I hope you aren't experiencing any of the same feelings.  I hope you are only happy as I can only imagine you to be.

Your brother has been playing some great hockey these days, scoring and getting assists.  Some games are better than others, and we are very proud of him!  He is still loving the game, and he has a great team, so despite late nights, early mornings, and lengthy drives he couldn't be happier.  He has another tournament coming up over Thanksgiving weekend, if you aren't busy, come on by!

We celebrate Noam turning 4 in a couple of weeks.  This one is going to be tough.  I am still not ready to accept he will be the same age as you.  I cannot process that you should be 6, that you would be turning 7 in less than 3 months.  In a year and a couple of weeks he will be older than you, that will be incredible for him, but horrific for me.  I am trying to do my best to celebrate all of your siblings' birthdays, but full disclosure, it isn't easy.

On that topic, for the first time since you have been gone, I actually decorated for a holiday.  I took out our Chanukah decorations and set them up around the apartment.  I have the handprint menorah Miss Amber had you make.  I have your "A Hannukah Bear for Sonya" story and bear on display with your siblings' books and bears.  I still have the cards Nurse Teri gave to everyone.  I am trying to make myself want to be back to my old holiday/birthday fun self.  I am trying to follow my old adage of "fake it til you make it", the jury as always is still out, but I am giving it whatever best I have.

Before I end my letter, I want you to know that I am really sorry that I haven't gone to your grave.  It is up there with my lack of desire to do anything.  The guilt mixes with the fact that I know I don't need to be there to be with you, I just want/need to get you all of your rocks!  

Anyway my love.  I love you! Be safe! Come visit!

Until next time.

Love always, 

Ema

92 weeks and 1 day

Dear Sonzee, 

Hard to believe we have completed 2 weeks into the 90 week category and there are just 8 left until we will be in triple digits.  I would ask how that has happened, but the short and simple answer is, life. The 4 letter word that represents so much and yet doesn't physically involve you anymore.  A concept still beyond difficult for me to grasp.

This last week brought us to your brother's hockey tournament in Chicago.  Something that once would have taken a lot of diligent planning and mixed emotions on your involvement but that ended up happening without much consideration.  It was as simple as booking flights, booking the hotel, and me just taking off of work.  The most challenging part was figuring out food, but even that turned out to be simple and hardly took much effort.  

I mentioned you more often than I have ever to this group of people.  It still feels awkward to bring you up sometimes, and sometimes I mention your name as if they would know who you are and then I wonder if I should say more or just keep on going with the current conversation and let it go unless questions are asked.  I wonder if the second guessing, overanalyzing, and sheer awkwardness of your life and death will ever become easier, or at least less complicated in my mind?

Your brother played really well this weekend, although there was no championship win for his team.  They won one game and lost three, but played some amazingly talented teams.  We set the bar high for your brother with our motivation for him, but in true Tzvi fashion, he pretty much came out accomplishing it all.  We wanted him to play more aggressive and said to get one penalty over his four games, he managed to get two.  We told him to aim for scoring one goal, he managed to score three (although one unfairly didn't count because the ref decided to blow the whistle as he shot it in).  We told him to aim for two assisted goals, he came up slightly short on that and only had one, but he did score an extra goal himself that could have been assisted had he passed it, so that is sort of a toss up.  Overall, he had fun, and he played really well, we are really proud of him.  I wish he could have snagged a hat trick, but there will be more games to come.

I need to get to making all the rocks I owe you.  I am sorry I am so behind!

Anyway little girl.  I miss you.  I love you.  

Until next time.

Love always,

Ema 

1 year 9 months

Dear Sonzee,

 Today completes another month that has gone by.  An entire 21 months, just 3 shy of completing another year.  This month was another relatively tough one.  It still has not gotten any easier, in fact, some days and things are just so much more challenging. 

This month I found myself able to speak out on matters that I once would never have held back on, but have since you have been gone.  It was the first time I was able to speak out against illegal handicap parking.  Something so simple, but something that I have shied away from as a protective mechanism.  I didn’t speak to the people directly, but I did ask the owners of the area to address it and they sent out an email.  To be honest, it did little to stop all the entitled people who feel dropping their child off at gymnastics warrants the use of a space designed to be used by those needing to be closer to an entrance.  However, have no fear, my next stop is calling the local police department and asking if they have the resources to come and sit in the parking lot during pick-up and drop-off times.  I am just really trying to do my best to not start altercations, which I know is where this is headed.

This month I hardly was able to look at your pictures, and I haven’t been to your grave in an entire month.  I managed to be able to sit there the last time for over 2 hours, so at least once I got there it wasn’t as horrible.  They fixed your bench, it looks amazing.  I also have to apologize because I didn’t make it there today either.  I didn’t paint your rock yet either, but I will.  I know whether I avoid these things or not doesn’t change the reality that you are still gone, but attempting to pretend is something I have gotten fairly good at.

This month the anger came back full force.  Maybe it never really left, but I just find myself really frustrated over you not being here, over you having had to suffer, over it feeling like so many people have moved on from you being here, over organizations dropping us when at one point they used us for whatever benefit they could gain from having us promote them, over life moving on and forward, over life being normal, just angry over it all. It’s just all so hard.

This month was just another on this never-ending grief journey, but also another month that you were free, not suffering, and able to be comfortable.  Our roles have switched, and I wouldn’t have it any other way, except if I could have had you here with me without that horrible CDKL5 mutation, but I suppose that’s a discussion for an entirely different life.

 Anyway baby girl.  Have fun. Be safe.  Come and visit.  You are loved and missed beyond measure.

Until next time.

Love always!

 Ema

91 weeks

Dear Sonzee, 

This has been one of those long weeks.  It isn't long in terms of how quickly it went by, but in grief it was lengthy.  It feels like it has been an eternity since last week's letter to you.  This week I found out that your tile was created and placed at Ryan House.  To be honest, I have not even posted about it or shared the picture of the tile that Corrinne's mommy so kindly sent to me.  I can't bring myself to go and see it myself.  It is right up there with avoiding your grave. I am so sorry.  I hope I can eventually bring myself to go.  Ironically when we toured Ryan House in 2016 I remember thinking how amazing that memorial garden was, and I knew one day you would have a tile placed on the wall and I pictured myself sitting out there.  Fast forward to reality and I haven't been able to attend the virtual breakfasts they have had since your death or drive near the building.  A place that just two years ago last week you had what was unknown to all of us, your final stay there.  A place that once brought our entire family peace and comfort, and now, I cant stomach its existence.

This week we began apartment living.  I am just going to put it out there, I am not an apartment living sort of gal.  It certainly has perks and privileges (like the cold brew on tap), but otherwise, I am thankful we know we have an end in sight and it won't be permanent.  Our first Shabbat there was really amazing, to be honest, there are so many religious families.  We ended up sitting downstairs outdoors and bringing our food down for a potluck.  In the process I realized we have no one under our unit despite being on the third floor, and that we are directly over the 3 floor high ceilings of the lobby.  Winning!  The plus is now I can stop yelling at your siblings for jumping around, the negative is they now know no one is under them so they remind me when I tell them to stop jumping around. I probably should have kept that knowledge to myself, but you know how I get when I am super excited.

Tzvi had his first tournament this weekend.  I will say overall the team improved from game one to game four, it was just heartbreaking they didn't snag a win.  They played well, but they played against some amazing teams.  This week we head to Chicago for another tournament and we are all really excited, except I am fighting with the emotional component of how easy planning and executing it all has been without you here.

Anyway baby girl.  I hope you have a great week.  Stay safe and healthy!  Come and visit, please!  I miss you greatly!

Until next time.

Love always, 

Ema

90 weeks

Dear Sonzee,

This last week has been one of the more challenging ones over the last 90.  I would just like to take a moment to reflect on that number.  90 weeks.  It sends chills down my spine.  My brain cannot compute how time, really life, continues to move, and so quickly.  

This week was one of those weeks where despite how much my heart aches and how much I miss you, I realize you are with us and orchestrating so much of what continues to happen with us and for us.  I will be honest, knowing you are "with" us in a different manner than physical does little for compensation, but it does help to feel your support, or rather your guidance. 

On Tuesday we found ourselves finally settling for the damages of the flood.  It led to a conversation with aba Wednesday morning before I started to work that left me ugly crying in the office, only for a coworker to walk in to see me.  I am sure that was also planned by you as she was the absolute perfect person for the moment.  She encouraged me to cry and listened as I attempted to talk through the tears about how challenging I am finding the prospect of losing your swim spa.  I know I don't ever want to go back into our "Phoenix" house.  I can't live in a house that has nothing of your room, and I don't want to.  Your swim spa though is more of a challenge for me to accept not being able to take.  After I paused, with tears in her eyes she began to tell me about her son and how he died.  My heart instantly knew you sent her to me.  She went on to tell me you won't ever be able to leave my heart.  You won't ever be able to leave my memories.  In my heart and mind is where you will forever be, and the rest, well it is just stuff.  Hashem knew those words had to come from her.  Lord help the average Joe without having lost a child who would have ever said that to me, but coming from someone further into this journey, I trust her words.  I know she is right.  I know despite how much the tears instantly fill my eyes, and how my heart breaks, she is right.  It is all just stuff.  The pictures, the memories, all of it within my heart and mind...it still is fresh, it is real, it is you part of our life and world forever.  Let me tell you though, I am still going to cry over the loss of the stuff.

Thursday morning we found ourselves signing a lease for an apartment.  Who would have ever thought we would be living the apartment life?! But, here we are...It won't be so long, just for a few months.  You have orchestrated some amazing happenings that are hard to ignore and show us how things really do happen for a reason and for the best.  Sometimes I wonder if you sacrificed yourself for your siblings and for us to be able to leave our old life.  Maybe your death isn't where this all started, but 90 weeks later I know you are making sure we all start this journey by really moving forward.  I will emphasize it is by no means emotionally easy.  There is a mixed semi-panic feeling like I am free-falling as I think about life continuing without your big stuff.  There is a part of me that's so afraid that without your stuff the memories won't be enough.  Then there is a part of me that says it is time for us to start on a new journey with you guiding us, with me allowing you to guide us, with me trusting in the plan that I have no awareness of.  There is a part of me that is excited over all the positives that are coming our way, but there is a fear of me fully trusting only to have my feet pulled out from under me like it always was as we lived life with you.  I am afraid to get too comfortable, to trust a little too much, to put my guard fully down.  

Motzei Shabbas brought me to the realization that our life and new life can coexist.  It allowed me to realize those close to us understand the circumstances of our situation.  I realize everyone understands our need to move forward despite that it means change. 

Yesterday your brother had his 3rd league hockey game.  I don't want to ask where you were, but clearly, you had other plans because I can tell you weren't there.  I will give you the same lecture I give your other siblings and remind you that I don't care what other plans you have, you need to come and support your brother.  That 2-8 loss was brutal Sonzee Bear...the least you could have done was throw a goal your brother's way.  Well, as aba would say, the least you could do was nothing...which you did...so this weekend is a tournament in Scottsdale and I am going to tell you, that for all of his games I expect your attendance.  I know you are enjoying your freedom and all, but no excuses.

Anyway, little girl.

I miss you lots, hope you are doing well, and hope you visit me in my dreams soon.

Thank you for everything you have been bringing our way.

Until next time.

Love always, 

Ema

Different hope

I have had a love/hate relationship with the term hope since February 11, 2015.  There was always an internal tug between protecting myself and relinquishing the fear of actually allowing myself to be crushed by the fallout after hope failed.  After all, living a life where death is waiting on the doorstep is nearly impossible without giving in to some sort of hope. Hope that seizures will be few and far between. Hope that illnesses will come and go quickly and not leave behind any secondary long-term symptoms.  Hope of limited hospitalizations or at least quick ones and enough recovery time between the next one.  Hope that the decisions that are being made are the best ones not only for the moment but for whatever the foreseeable future looks like.  Hope that going to sleep will result in waking up.  Hope that the days are filled with more calmness than turmoil.  Hope for the best-case scenario. And dare I say, at some points even possibly hope for a cure.

There came a time eventually when hope became dismal.  When the real hope of life ever becoming normal, different, or potentially something other than what it was really meant to be was no longer in view.  When I realized that what I hope for can't be anything long-term because days became obviously numbered and all there was, was a new perspective on hope.  Hope has always been an abstract concept, but it now turned into something ungraspable because I won't ever learn if my hope is being achieved.  I can't ever receive confirmation because instead of hoping for my child to be "cured", or for her life to be significantly easier, or for her to be seizure-free, or for her to speak her first word, or for her to do any of the many things that her body was deprived of due to a lack of a functioning CDKL5 gene, I am now simply hoping she is resting in peace.  

There is no more hope for a cure when you start to live life after CDKL5.  There is sadness for all the CDKL5 siblings left behind as they continue to suffer.  There is extreme empathy for those families receiving a new diagnosis, but there is less of a care or emphasis for any sort of cure for something that doesn't matter because it cannot and will not bring my child back.  Maybe that is selfish.  Maybe it is just a moment in my grief journey.  Maybe it is just the cold hard truth.  I am no longer able to hope and dream of any positive potential for Sonzee.  There are no more hopes for walking together and hearing about her day or what her dreams are.  All I am left to do is hope to dream of my dead child, continue hoping she is safe, and hope that after I die I really will be reunited with her.    

89 weeks

Dear Sonzee,

Today will mark 89 complete weeks without you here. This time 89 weeks ago you were being held in my arms…in a few more hours it would be the last time I got to feel your weight, hold you, kiss you, and tell you in person “I love you.” I wonder if you even heard me?

This last week went by so quickly and as I sit here trying to recall everything that happened I always wish I had started to write this during the week so I wouldn’t forget what I wanted to tell you.  

The big highlights of this passed week were really that Tzvi had his first league game.  It was the 2nd time I’ve sat in that rink on the north side for a game since you weren’t with me.  Since you didn’t require us asking for the key to use the wheelchair elevator so you could sit in the stands.  It was the first time that nurse Paige sat and watched a game without keeping an eye on you.  It was amazing for her to be there with us, embracing the tram spirit with her purple and black, getting to see your brothers first official goal of the season, but it wasn’t the same without you.  You weren’t kicking off your boots, she wasn’t swiping your VNS magnet, she wasn’t trying to adjust a soft purple blanket fighting with you to not kick it off.  She just sat next to me and we talked like our only focus was on the hockey game. 

It brings me so much comfort that she’s still in our lives, but I know it’s not just me who misses all those things I just listed.

On a similar note to your absence, after you died I made it my mission to make dinner for Corrinne’s  family every time she was admitted to PCH.  It was just all I could do to sort of remain in the old world and knowing how nice it is to eat a home cooked meal and not pay $182736 for Starbucks coffee became my mission to ensure if I knew, her family got coffee and dinner.  Then, she went to be wherever you are and life without you girls changed us all drastically and even random coffee drops couldn’t occur because there was no way to know who would be home, so dinner making essentially stopped. Until last night, when your CDKL5 sister Charlotte was back in the hospital.  I had tried to make dinner the first time, but it didn’t happen. Yesterday I just told her mom it would be coming, and I made dinner, coffees, and might have even thrown in a couple of beverages that the hospital doesn’t sell.  That hospital life sucks! The least I can do is bring food and coffee knowing what I know about that life and the suckiness it brings. 

My heart misses you terribly and while I would never wish to enter those rooms on the 8th floor ever again, sometimes my heart wishes you were here to have that option. My barista level of coffee making is 100% attributed to you!  

Anyway baby girl!  I love and miss you! I hope you are staying safe and having a blast with all of your friends! Thanks for showing your brother some love yesterday and helping him with his first goal.  Thanks for bringing Nurse Paige and so many others into my life.  

Until next time.

Love always,

Ema

88 weeks

Dear Sonzee, 

Another week has come and gone, marking 88 weeks since you left.  This last week was my fall break and despite being off of work for a week I still feel like I didn't get all I wanted to be accomplished.  I did finally manage to get over to auntie a's new place and organize Mo and Ziva's playroom, bedroom, and kitchen.  I still need to tackle her closet, but you know how Auntie A is, she has to be coaxed into allowing me to do my thing...eventually she always comes around.

Corrinne's mommy and I finally got our nails done.  It has been since summer since we have gone so that was nice we were able to catch up and to do some self-care.  I am trying to be better in general in that department.

Bear Pines has been doing really well. We have been pleasantly surprised at how full we have been.  We initially thought with it being off-season we would hardly have guests, but it is quite the opposite.  Someone wrote on the comment card they were sorry for your death.  It makes me smile that people actually read the wind chime that has your birth and death dates and or the information we put in the binder about you.

Yesterday was the first relaxed Sunday we have had in a while. It was nice to not have anywhere to really be besides Tzvi going to hockey.  Starting next week begins the craziness of games.  I can't wait to go and watch him, but also, nurse Paige is going to come and watch since we will be in her neck of the woods.  I cannot wait to start seeing her on a more consistent basis, or at least whenever she will be able to join us.  I have gotten used to her not coming in the house at 7am and not being there when I get home.  It helps we aren't at our house.

We had grief group Thursday night and the last photographer to take pictures of us as a complete family was taking pictures for hospice of the valley.  I mentioned how he took our pictures and we chatted about it for a bit.  I haven't fully looked at those images, but I have taken a quick peek now and then.  I wish we had dressed up, although at the time I wanted it to be real.  

Anyway baby girl.  

I miss you! Hope you are doing well!

Until next time.

Love always, 

Ema

87 weeks

Dear Sonzee, 

 Today closed out 87 weeks of your absence. This last week we finished the last days of Sukkot and your siblings finished their fall break. Ema's started today (wahoo!), but more on that next week. We spent our first full holiday at a different shul in a different community. To say we have been having a wonderful time here would be an understatement.  It brings me such joy to have your siblings' friends walk over to either play at the house or pick up the one they came for. To add to that, ema is also thoroughly enjoying being within walking distance of her closest friends. It has been most challenging for aba, but he is not the biggest fan of any type of change.

 We celebrated our first Simchas Torah without you. That was a bit tough, at least for aba and me. Some of your siblings reflected on your absence. I remember when aba was afraid to take you to the party the first time. He said you would not like it. I asked him how he could know if he did not try, and he humored me and took you with your siblings. The main difference between anyone humoring me when it came to you, was that it always resulted in my being right. (I will give myself that shameless brag). It makes me smile ear to ear to think about you in your wheelchair with your father pushing you around during hakafot dancing with everyone. There was even a year a friend of Meena's broke your wheelchair sitting on it with you. Small price to pay for us to make sure you were not slighted any experiences. You LOVED this holiday. You LOVED to be out there with everyone. You LOVED the attention. Last year, because of corona aba and I were relieved to not have to experience our first Simchas Torah without you because it did not happen in the same way it had while you were alive. This year...for me, I was able to avoid the first night because only aba went back to our usual stomping grounds. It was not easy for him. For me, the change made the blow softer. I teared up myself on the second night watching when aba put Meena and Noam on his shoulders, and when I watched him walk around empty-handed, no wheelchair within his grip.

 Being in this new environment has led us to new experiences.  I am sure that was your intention in whatever hand you played in flooding out the only home you ever knew. It is an amazing opportunity for us to give your siblings, for them to be near their school friends, and within walking distance of their school. It is a step in moving forward for sure, but there are times when I feel like I am a heavy weight stuck mid-step. Like when people who do not know us because even though we have lived in Phoenix for 13 years, we have not lived here, where we are, for 13 years, and I have to answer basic "how many children do you have?" questions.  There are conversations that occur in passing about our 13 years here in Phoenix, I will admit with an apology, I sometimes leave you out of the story. There have been times where I have met some amazing new to me people and I talk about you non-stop and let them know about "Sonya's Story" and how my blogging began because of you. I am still finding my way through this mirky grief water that is for certain, and another week under my belt has not changed that.

 Anyway, baby girl. I miss you, love you, and hope you are having fun, playing hard, and staying safe.

 Until next time.

 Love always, 

Ema

1 year 8 months

Dear Sonzee,

Today, in 18 minutes it will have been one year and 8 months, an entire 20 months without you.  How ironic that 18 represents life and I am writing this letter to you, and as each minute passes by your life only gets further from me.  Today, for the first time in exactly 2 months I am sitting at your grave.  I am sorry it took this long for me to be able to muster the ability to get in the car and drive to “see you”, to see your stone, to be able to see your name clearly etched staring back at me while I sit on your “hooray for Sonzee” bench. 

I painted you some rocks today baby girl.  I also got to see some new ones I haven’t seen from others who visit you.  My heart hurts looking at the rocks that have begun to fade and the ones with wording scratched off. There’s a part of me that wants to fix them, and there’s a part of me that says I shouldn’t. They represent the time that continues to pass, the weather that presents itself, the life that is continuing to go on without you here.  But it really breaks my heart. 

Thank you for the wind.  It made me smile through the tears I allowed myself to shed in front of you, the ones that I have tried to not have, the ones that make this all so real. 

This month has had its fair share of ups and downs when it comes to my grief.  I still haven’t figured out how to live with it as much as I thought I might at this point.  I still sometimes pause and remind myself you really did exist.  There are times when I am asked how many kids I have and with an unnoticeable twitch I say 5 and then if they ask if they are all at the same school I say yes.  It isn’t a lie, it just doesn’t hold the entire truth. 

This month I realized even more so that people just don’t understand that because you aren’t here physically doesn’t mean your siblings don’t need support anymore.  There are organizations that popped in during your life and then left us high and dry after you left.  It’s a shame that’s how they work.  Maybe it is an oversight, maybe they don’t really understand that during your life your siblings didn’t need the extra attention as much as they definitely need it now? Maybe they feel because you were the reason they were introduced to our family and you aren’t here that they don’t need to continue with us.  Whatever the reason, they should understand that grieving siblings shouldn’t be an afterthought.  It makes me angry, but it’s not worth my energy and we also do not need their assistance…but dropping us is wrong and just weighs on my grief.  After all, at one point you made our family “high priority” so it’s a slap that you are gone and that makes us not even a thought.

I don’t know what to say that in 4 months it will mark 2 years without you.  It’s hard to write, it’s hard to read, it’s hard to understand.  

Anyway baby girl.  Another month without you means that it is another month that you are perfectly whole and amazing. It’s another month you weren’t confined to your locked body.  It’s another month that you were able to truly be free and be YOU.  Another month means that you are able to do everything you couldn’t here.  Those are the thoughts that bring me a sliver of peace. They are what help ease the heartache.  They aren’t a complete fix, but they provide a cushion for the blows.

Please stay safe and healthy. Please continue with your signs and when you feel it’s right, please come and see me!

I love you baby girl!

Until next time.

Love always, 

Ema 

86 weeks

Dear Sonzee, 

Today at 1:08pm, 86 weeks will have passed since we last were together.  How has it been that many Mondays since you were here.  Why does part of life seem so normal, and the other part seems like I am living on an alternate universe?!  Sometimes saying the weeks make it seem so far away, and then this weekend I told someone almost 20 months and they responded with a huge sigh and said, "that just happened, it is so fresh".  I never know what the time frame will mean to another person, it is more interesting to me than anything else.  But also, in the split second it takes for a reaction to occur I find myself holding my breath afraid of what they might say.  In this case I felt a quick sense of relief and then in my mind realized how recent it really was despite how long it feels.

This weekend someone asked how many kids we have.  I paused and decided to phrase my answer in a way that I had secretly hoped would be overlooked, but that kind of backfired.  I said, "I have 4 here". In my mind it was an honest answer, and I assumed the "here" part would be unnoticed.  Instead, it was followed up with, "here? are there children somewhere else?".  Which resulted in laughter from everyone around including myself and aba, but then I felt so badly when I had to interrupt the happy mood with, "well, umm, actually, we have 4 children here, we had 5 children, we had another daughter, but she died".  I really dislike how the mood shifts from cheery and festive to morbid in a matter of seconds.  We spoke about you for a bit, which is always nice, we told them how Bear Pines is completely in your honor and inspired by you.  Then someone asked what was on aba's socks and we said, "oh, so the daughter that died, it's her", and then aba explained how he wears you every weekend because it is how he keeps you around with us.  

Tonight, is Corr's celebration of life.  We sadly will not be able to go because of the beginning of last days of Sukkot, but hopefully you are able to stop by.  I hope you girls found each other and are having a blast living your new lives together.  Miss Brittany and I miss you both ridiculously! 

Your siblings finished one week of their 2 weeklong fall break.  It has been a bit insane, except I really cannot comment so much because I have been working and will be besides the days I have taken off for the holiday's until they go back to school.  Then it will be my fall break and they will be back in school.  We finished our first full week in the new Airbnb, minus this weekend because we went to Bear Pines.  Tzvi’s hockey games start soon, and we sadly will not be able to go away for the weekends as much as I would like, but we do have a trip planned to Chicago for one of his tournaments and I am pretty excited about that.

Anyway, my love.  We miss you beyond words and hope you are safe and doing well.  

Until next time.

Love always, 

Ema

Weather pattern

I was recently asked if I could describe my grief as a weather pattern what would it be.  The idea gave me pause and a good inner chuckle.  I considered my answer while a myriad of thoughts was flooding my mind. 

 Maybe a tsunami?  Does that count as a weather pattern?  I don't think so. Maybe those times that low- and high-pressure systems come together? A thunderstorm with atrocious thunder and lightning, but then all of a sudden it is over?  A sun shower on an otherwise beautiful day? A lightning storm? An Arizona Monsoon, where it comes in quickly and leaves just as fast?  How do I answer this question? 

 I began to speak but as I always feel when it comes to trying to put my grief into words, I stumbled over my words.  I feel like I am in a state of confusion. I feel like my weather pattern is all over the place, but the trickiest part is that I am not even aware of what it may be or could be until it is actually happening.  I feel lost in a horrible storm and wish someone would join me in it, but I want to be in the storm by myself, so I don't really want anyone around.  I want to ignore the way the rain comes out of nowhere and how loud the thunder is and how scary the lightning is. I wish I could have a personal meteorologist, someone to give me some warning over what potentially could be on the horizon and how long it may last.  Maybe then I could give warnings to others so they would know the right thing to do.  

 The truth is unless you truly live with the grief of losing a child it is hard to conceptualize the complexity of the inner turmoil.  The panic of the world forgetting your child, the guilt over not wanting to think about your child, the fear over someone overstepping but the sadness of them not taking any steps at all or not enough.  For me personally, the weather pattern is not quite known, but one thing is for certain, it is always, always, unpredictable. 

85 weeks

Dear Sonzee, 

Today marks 85 weeks.  I feel like it is one of those numbers that should earn me a medal of some sort.  How this many weeks has gone by is so baffling. My brain cannot even compute what you might have been up to all of this time.  What I would give to not have to imagine but to be able to truly know.  I am slowly clawing my way out of the deeper folds of grief I have come to find myself in.  It is a slow process and I had my turn of experiencing that these cycles of grief are sporadic, disorderly, unpredictable, and yet extremely repetative.  It all sucks.

This week I was asked on two different occasions how many children I have.  The first time I responded that it dependended on  what context the question was being asked, it was clarified to mean "live births", so that allowed my answer to include you.  The second time I did my typical stutter, and then said well, I had 5, I now physically have 4, but I had a daughter who died.  The person then clarified and said, "so you have 5". Then we spent 30 minutes talking about you but how life has changed since you left us.  The person mentioned how incredible I was for being able to talk about you.  Truth is she just caught me in a "good moment".  I do have those times where I can talk about you and not even flinch.  Those moments confuse me, but I am grateful for them.

On Thursday we had Yom Kippur.  The Yarhtzeit candle holder and red memorial lights I had purchased for you are packed away in storage so I ended up buying a 50 hour candle that had a quote on the jar about missing you and it smelled really pretty.  I bought two, with two different fragrances. They might be my new go to.  I didn't go to shul for Yizkor, I am happy I completed the fast, but I did feel really guilty I didn't get to go.  I know I have another chance over Sukkot.

We moved to a new rental.  We have this one currently for 6 weeks, but we are hoping to be able to extend it so we don't have to keep moving.  We learned it will be 6 months before the house is ready.  That gives us time to really figure out what your message is to us.  But, really we cannot keep moving.  Your siblings have been amazing, but it breaks my heart when I think about the chaos and heartache they have experienced for the last close to 2 years.  They need some stability and for things in their lives to just level out.  They have all at different times asked why bad things keep happening.  I try to reframe it to be that they aren't exactly all bad things, but if I am fair, in their eyes, nothing has been overly positive.  They are honestly doing incredible, but I can see where they each are cracking a bit and I am trying to help keep them together.

I still have not been to your grave.  I am sorry.  Someone told me I will get through this part and be back to it soon, it is just part of the process.  I am waiting for it.  I know I am slowly getting there because I have thoughts in my mind where I consider going vs not even entertaining the idea.  I just wish this would get easier...but I know that won't ever be the case.  Maybe if I knew you were able to be the you that you weren't able to be here with us, then it would be enough? 

Anyway baby girl. Please stay safe and healthy.  Please visit us. Keep sending your signs.  You are missed and loved!!

Until next time.

Love always, 

Ema

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