Ride the waves. Crash. Repeat

Dear Sonzee, 

It has been 9 Mondays since I last wrote you a letter, but just 5 Mondays since I last wrote a blog. Maybe I should clarify, since I last wrote a blog out of my mind, one that I felt I needed to get out of my mind or the words would could continue to crash around all muddled. I suppose it is only fitting for the situation I find myself in. 

For weeks I have been experiencing all sorts of new "life after you" situations that didn't seem to phase me. Maybe it was less that they didn't phase me, but more that I didn't quite know how to handle them? I felt that maybe this was just part of the whole time is passing me by concept. Maybe, just maybe, this is what everyone refers to as "moving forward". Dare I say that it felt almost like hope. That alone should have told me better. Life was moving forward at lightning speed, you were coming along for the ride right along with me, I felt it. I knew it. I wrote to you so many times in my mind, but in the end, I didn't need to get the words out for anyone else, they were just there, for me, for you. I felt like that was progress, maybe it still is? was?

Your siblings have kept us beyond active in this everyday hustle and bustle of the life you left behind. I enjoy the speed because it makes time easier to handle. I have found myself talking about you to anyone who will listen, and maybe even some who wish I wouldn't. I have thought to myself how much easier the talking about you part has been during year 3+. I shared that and some other positives with Corrinne's mom recently. She too is living in a universe unlike the one she and I ever knew together. Maybe we are both avoiding the alternative reality? Maybe it is the only way to cope? Either way, it seemed celebratory.

Halloween at FBC came and went, your sister's first gymnastics season is about to be in the books, with the remnants of medals and new equipment in our house to prepare for her next one. Your oldest brother has had a few tournaments come and go, I am almost finished needlepointing Tzviki's tallis bag, and our house is experiencing cold/flu/virus "PCH restriction" season with little concern except for how it might affect the outcome of your siblings and their sporting events. An inner chuckle and nod to this "life after you" (still feels new reality) is what I offer, but really a solid 10 minutes of hysterical laughter would probably be better suited.  In the words of Cher from Clueless, "As if".  

I took pumpkins home from school a few weeks ago for your siblings to decorate, one for each of us. It took a conversation with Meena who was arguing over Noam painting two for me to realize that I brought home only 6. When I said the words, "I brought one home for each of us, I brought 6 home", I immediately realized the mistake. Except it wasn't a mistake and I wasn't even upset. I didn't know how to process any of it. The realization of what I did, the fact that it felt okay. How was I supposed to feel? I guess as I did? You wouldn't have been able to decorate the damn pumpkin anyway. I am sure whatever one you have by your house in heaven is far more glamorous. I felt it was another moment on this journey where I was moving forward. I didn't need the pumpkin as a representation of you. I didn't need to stare at a pumpkin that you couldn't and wouldn't decorate. I didn't need to have a pumpkin to somehow subconsciously attempt to make you be here, to be real. It was a step, I think? 

Has everything been a step these last two months? Was any progress made? Or, was it simply that I have gotten so good at my ability to compartmentalize and avoid that I managed to ride the waves for 9 complete weeks feeling like I was invincible? None of my avoidance or compartmentalizing makes the pain in my heart any less, it just makes it so much easier to pretend that it is the case. The insane part is that I even fooled myself this time. I really felt like things were okay. Maybe they were? Maybe they are? 

Most of the things I have come to do since you physically left me were things I did to cope with your absence. Sitting by your grave for hours, writing you letters, painting rocks, buying you keychains for states you won't ever go to, buying bears or items that are red, posting pictures, telling stories, every single related to you, it was and is just for me. I understand that. That is why it makes so much sense it is always changing.  I know deep down things were and are actually okay. It is all part of the journey. It won't make sense despite my best efforts because life after your death hardly does on its own. It's why as much as it hurts to ride the waves, crash, and repeat, it is what I will continue to do over and over again, for me to deal, with a life without you. 

Until next time baby girl. 

Love always and forever, 

Ema

Expired

When Sonzee first died a close friend of mine whose daughter had already died told me “Randi, you’ve got 18 months before you aren’t allowed to grieve anymore”. We joked we should write a book about our time limit and things we should advise other bereaved parents to do during that allotted time. I think we chatted about it two times and that was it.

Through all my reading of grief books and online and in person grief groups I had heard there would be or it was at least referenced, that people would expect grief to end by a certain date. For 2 years on the grief journey I thought how I had been lucky I hadn’t really experienced any of the “negative”’comments, thoughts or insinuations. There were brief glimpses of idiocy presented to me, like the day after Sonzee died when someone told me I’d get over her death because her sister in laws cousins friend had lost a son to cancer and she had moved on so I shouldn’t worry; I’d get over it. I turned that into a joke during shiva with my closest friends with either them asking me if I was over it yet or me saying we shouldn’t worry because in a few hours I would be good to go.

A sprinkle of comments here and there would occur, but always during the first 2 years at least one person would ask me how I was doing and insinuate they were wanting to know how I was “truly” doing. Truly wanting to know how was I coping with the death of one of my children. Albeit an awkward question to answer, at least it was asked.

By the start of year 3 on this grief journey that question was no longer asked by those who are not true friends. Attending events seeing people I haven’t seen since Sonzee’s death or around that time, no one asked. Maybe they didn’t care? Maybe they didn’t want to “make me think about it” (ha! We can discuss that in another post). OR maybe, it’s simply that they didn’t even think about it anymore. 

It’s been 3 years 8 months and 17 days. I was asked one time during the last 8 months how I was really doing, and it was followed up with a “but aren’t you happy she is in a better place?” A statement that has nothing to do with how the death of one of my daughters still, “even” after 3 years 8 months and 17 days feels the same if not worse than it did on day 1. 

I realize every day how much life goes on. I get it. She died, people felt badly and then resumed their lives. People mourned her loss and maybe even a few still think about her, and maybe some even wonder how I am truly doing, but don’t bother to ask. It’s not fine, but at the same time it is, because I am here to explain, she may have died. Her life may have expired, my pain has not and it won’t ever. That’s ok because grief is just how I will continue to love her. I don’t need anyone to call and ask me how I am doing, I don’t need to have to dodge the uncomfortableness of others when I might bring her up. I am just here to tell you, grief is forever, so a true check in on all your bereaved parents shouldn’t expire.

4 weeks

Dear Sonzee, 

It has been 4 weeks since I last wrote you a letter. I am honestly a bit surprised because it feels like I missed so many more than just 4. Weeks 186, 187, and 188. Technically I could get away with writing you one during week 189 because that started just yesterday. 

These last 4 weeks have been avoided on purpose. I am entering the time of year where I'd rather not deal with your absence. Truth be told even though I don't send you the letters that write themselves in my mind, it is impossible to avoid your absence.  That is felt more and more every single day, but when I sit down to put my words onto this electronic paper, the tears fill my eyes and the weight on my chest becomes heavier. The breaths are hard to come by and it feels like someone has placed a 30-pound weight (well honestly it could even be 5lbs because we know I am not the strongest person) on my chest. The pain becomes difficult to ignore. It is the same pain that is always present, but I have mastered pushing it down and not feeling it. That is a benefit of it being 3.5 years since you physically left. 

The last 4 weeks included another CDKL5 child dying. A fact that I have tried hard to also ignore, because knowing another parent is on this journey makes me sick to my core. Me transporting back to the beginning is unavoidable when a CDKL5 death happens, so the avoidance of everything becomes two-fold.  

Today there was a meeting at work and the mom and I have followed our children's online journeys for some time now, so I said how it was nice to finally meet in person. She replied that she stalks me to read my journals, and I mentioned how I haven't written one in a while. I felt like I needed to share an excuse. I doubt she needed one. I am sure it was just for me to justify my actions aloud. It isn't an excuse per say either, it is more of facts. An excuse would be me saying that I don't have the time, or that your siblings have me busy, or work, or an endless list of reasons; because the reality is that I am making a conscious choice to not write to you. A sad reality, but the reality of life after your death, because it is easier to avoid than to confront the grief.

Over these last 4 weeks I did manage to visit your grave and clean it up while placing new rocks and items for you. I have recently come to understand that the grave really is meant for the grieving and not for the deceased. I used to go for hours when you first died to feel closer to you, and now I know that you aren't ever far from me so I dont need to go to feel your presence or to be a good mom. I know you are with me and I know that if you need me you will find a way to make that clear to me. Growth? I think yes. Painful? Yes because it means it's been that much time that has passed for me to learn another #lifeafterSonzee fact. 

Another #lifeafterSonzee fact, September begins my deeper grief depression. It signifies the start of the end of your life, or rather when I started to search for answers I would never find. It was the season I started to document all of your changes to build my case to prove something wasn't right, to attempt to prove that my gut was right and that something was going wrong inside of you. The easy thing to do would be to remind myself that it wouldn't matter if someone agreed or if I proved my gut earlier; but my body and heart wouldn't listen to my mind in any case, even if I told myself that until I was blue in the face. This is just how it is; this is just how it will be, and that is okay. This is just how it has to be.

Over the last 4 weeks I have been asked if I am still sad over your death. I have been asked if I am not happy knowing that you are peace. Yes, to it all. I am and will forever be sad over your death, and the only solace is that you are at peace, but it won't change the fact that children aren't supposed to die before their parents, healthy or not. That isn't how life is supposed to work. I will give g-d an out on the whole CDKL5 diagnosis and special needs, but I can't accept the whole death part. That part is pretty much unforgiveable, despite the whole G-d has a plan I don't know concept. There is no plan involving your death that I will ever be understanding of, even if in the end it makes any sort of sense. 

The last 4 weeks had one of your siblings ask who was going to make your bedroom when Mashiach (Mesiah) comes, one of your siblings tell me that a bridge was built and gotten over in regard to your death (and then eventually corrected to admit that wasn't the case), and a sibling ask to read their Sonzee and Me book to sleep at night. I won't say which siblings or if they were all different, but everyone is on their own #lifeafterSonzee journey, and I just get to be there to support them without my feelings interfering. I don't know what it is like to lose a sibling, and I make that very clear to them. I also tell them whatever they feel is ok and right. 

The last 4 weeks have had me spend more time at FBC. I tend to keep you a secret while I work. Not because of another reason besides that it isn't necessary to share. However, there are times when I feel it helps a parent or a nurse understand that I have the best intentions of any possible person when it comes to assisting with communication because I have been a parent and caregiver to a child with significant needs who also sent their child to school with a 1:1 nurse. It sometimes serves a significant purpose to share about your life and death. Thank you for everything you taught me and continued to teach me.

Anyway Babygirl. I know this doesn't make up for the last 4 weeks, but I hope you can forgive me for being in the place I am in terms of grieving your loss. I miss you beyond words. My heart wishes beyond words you'd come visit me in my dreams. 

Until next time.

Love always, 

Ema

185 weeks

Dear Sonzee, 

We are back in Phoenix after our typical summer in New York. Summer hasn't been the same since you left.  This summer I worked virtually for a significant part of it, and it was only while I was driving back home that it dawned on me that it was my subconscious attempt to avoid you not being there physically with me. With Noam at camp all day and your siblings at sleepaway, it would have been just you and I taking on some crazy adventures...I don't really care to do anything without you there, not when that was our escape (Or attempt at one at least).

I drove 3 days straight with 2 nights in hotels to get home in record time. It was exhausting, but I just wanted to be home. The worst part about summer is the drive home. Noam and I dropped your sisters in Memphis to stay at friends for 5 days. They flew home yesterday, for the first time on flights by themselves. Laeya was old enough to not need to be an unaccompanied minor, and because Meena was between 8-12, she could go with Laeya. It worked out beautifully. I set them up with my Starbucks app and airline app and they were good to go.

Saturday night Aba and I went to a murder mystery dinner party. It was such a great time with great people. We were celebrating 2 friends' birthdays and it was great fun. I won the "Merry Maid" award (because I was a suspect as a maid). I also happened to win "dead last" in the guess for the murderer. The best part was how confident I was in that guess. My biggest fears of the night were having a character that required an accent and losing....both happened, and I handled it by laughing. (It didn't hurt that I had some yummy sangria).

I went to work Friday and got a lot done, but there never seems to be enough hours in the day when it comes to getting work completed. At least it was productive and it's always nice to be in the office with everyone. Thank you for bringing FBC into my life.

Anyway little girl, I love you!  Have fun and be safe.

Until next time.

Love always, 

Ema

184 weeks

Dear Sonzee, 

This week was our last week in NY. It started with Meena and Noam being in camp, with Tzvi hanging out at home, and ended with Laeya and aba coming back from their 2-week trip to Israel and France. I have been working a lot supervising via TEAMS and working on ieps that are upcoming. The weirdest thing is how NY won't start school until a month after Phoenix has. It's really surreal to watch kids go to day camp, while you are working on a computer while kids are attending school.

The days were feeling crazy while I worked and aba was away with Laeya. I joke, but it must be nice to be able to just travel for 2 weeks while the other parent is holding down the fort and working. Your siblings and I did have a good time, but Tzvi has pretty much lost his privileges of being able to stay home after camp. He will be in sleep-away camp or day camp, but not lounge around "camp".

Work has been keeping me busy and it feels challenging to keep up with everything, but it is working out. I am so thankful that I am allowed to work in this manner, so I will do what I can to make it work, but it isn't easy.  Sometimes I wish I was physically in the building to work on an AAC device or to see the kiddos in person, and not via a computer.

I went for the first time in years to the Emunah fundraising event that Ms. Malka always co-chairs. I ended up buying way to much as usual, and this is why I should not attend in the future. 

Anyway baby girl.

I love and miss you!

Until next time.

Love always, 

Ema

3 years 6 months 5 hours and 27 minutes (AZ time)

Dear Sonzee,

 

I am sitting here in the VV pool area for night swim with 2 of your siblings. The other one is galavanting around Israel (and soon France) with your father. Uncle and Hay-Hay are back at the house while Isla fights going to sleep. There have been so many times I’ve wondered how you would fit into this equation. Would we still be coming to VV? I tell myself yes, we were always encouraged to leave the hectic chaos of hospital and sickness life to give you and your siblings the best quality of life, but I wonder if that could have continued as you got older. Would you have finally grown? Would you have become mobile and required more supervision than we could offer you here? Would you have eventually been accepted into camp HASC??? What would our lives have looked like over the last 3.5 years? What would they look like now?

I struggle to comprehend life with you here still. I don’t know if it’s for any other reason besides it being just too difficult. I still, after 3.5 years, don’t like to accept the pain of grief and your death. I still, after all of this time still don’t like to think of you not here with us. It still takes my breath away. It still makes me panic. It still is just too hard. I know, I know, it is likely to continue. I get that. Well, I try at least. I get it about as much as I understand why you had a mutation on your CDKL5 gene, and why you were so affected by your mutation. I get it about as well as I understood AP physics…(for those who know me, that should explain my understanding). 

Life continues to move on, and so so quickly. I watch your brothers play together, and it makes me smile that they have each other. Their age difference is starting to become less apparent as they play around. Where would you have fit? The thought makes me broken, almost as broken as I am now, but that wasn’t even possible to comprehend while you were alive. I mean in ways it was as I expected, in others, nowhere near. 

Your siblings continue to grow up. You won’t. You don’t. You haven’t. You’re still stuck in my mind as a 4 year old. I still hate that we celebrated you turning 5. You never got to in real life, just the pretend life we tried to have for you. Your siblings continue to drive me crazy and each other. You hardly did that. Your siblings more often than not act as if their lives are normal.  I wonder how much of that is a facade and how much is real. I am afraid to know the answer to either of those questioning thoughts. 

I have kept myself busy this summer working. Something I didn’t and haven’t done any other summer. There’s a part of me I think doing it to ignore your absence since everyone is at camp. There is a part of me doing it to surround myself as much as possible in a world you once encompassed. It’s a double edged sword though. I love working in a place you spent a good portion of your life. I sometimes HATE when your name pops up in directories when I least expect it. I remain torn on if that’s a message from you or stupidity from the systems that for some reason haven’t erased you from them. But one day I am sure they will and I wonder if I’ll notice and it’ll hurt me more, or if I won’t even notice? Which will be better?

There is so much more we have been able to do over the last 3.5 years since you left us. A part of me wonders if you left us for that purpose? Did you feel like you were holding us back? I can’t say you didn’t, but I will say I didn’t mind. I mean there were some hospitalizations that were untimely, and you knew how to steal attention from your siblings. There were definitely other ways you could have gotten aba and i to spend alone time with you, but you preferred it to involve lots of tubing and medical interventions. I don’t miss those. I do miss the people. I miss being around people who got that life, because so few get the one I’m living now. That’s been a challenge. 

I feel like you are lucky because minus my fear that you aren’t healed and that you miss us, I know you are amongst some amazing souls. I am dreading the distance from your death getting longer than your life, but I know that amount of time will be here sooner than I’d like. How will it be that in just 6 months it will have been 4 years from your death and you were 4 when you died. I will get smacked with that timeline and then your 10th birthday all within a week of one another. 

I wish 3.5 years ago I would have known that I would feel essentially the same but yet some times worse. I wish the peace I felt 3.5 years ago was still surrounding me knowing and believing you are in a better place. I wish the comfort I felt at you no longer suffering would continue to bring me comfort now…it doesn’t, although I try to argue with myself that it does. There is little I can tell myself of your death that brings me calmness. I am happy your siblings get to live a more consistent life and that they get to have more experiences, but I’m not sure it is worth the expense of your life? I could again justify it to be the case…but I think they were living fine lives with you here.

Anyway baby girl. I miss you beyond words. Your loss is still felt by so many and your ema is still broken without you. There is still a huge void in our lives in case you ever doubt that and I pray that you really are flying freely and getting to do everything your earthly body didn’t allow. 

If you visit, please don’t bring any water, we are all good with the houses we own…but I’d love to eventually see you in my dreams because 3.5 years and 5 hours and 27 minutes has been long enough. 

Until next time.

Love always,

Ema   

182 weeks and 1 day

Dear Sonzee, 

Another week has passed, and in 2 days it will have been 3.5 years.  I traveled to Phoenix this past week for back-to-school training at FBC. I really enjoyed being back in the building. Amber and I saw your heart canvas on the floor and we both nearly lost our marbles. Joy (she is basically the new Jaime) assured us it is going to be a new focal point on a wall with student artwork, or at least off the floor. It was accidentally knocked off the wall and then a janitor threw it out causing Joy to dumpster dive until she found it. (Luckily, because Amber and I would have been broken). This year I am really excited about what is in store and cannot wait to get back to school. 

When I wasn't at work or being fed by Morah Alyssa and bubbie, I was doing projects around the house that aba doesn't know about and I am excited to see how long it takes for him to notice. I flew back to NY on Thursday night via the red-eye. Aba and Laeya left for Israel before I got back and they are going to France before they come home, she is one lucky girl that sister of yours. 

Meena had a rough start back to VV day camp after coming back from sleep away. Tzvi is enjoying lounging around. We ended up switching their phones from Troomi to Bark and everyone seems to be a bit happier. 

On Sunday we did Tzvi's annual birthday trip to the American Dream Mall and the water park. Uncle and I splurged on the skybox and it was a great day of water park fun and food. We left with your baby cousin Isla in toe, and she is camping out with us until the end of this week.

Anyway baby girl. I miss you!

Until next time.

Love always, 

Ema

181 weeks

Hey Sonzee bear!

The Zupnick's are going back to Phoenix tomorrow. They have been so fun to share the house with. We have spent a lot of time eating, as Morah Zupnick makes sure to prepare food all the time. She is a fantastic cook and is doing no favors to my already expanding waistline. 

This last week we have done some more clothing shopping and I have been working virtually. 

The weather has been on and off raining and hot due to humidity. I wonder how it is for you? 

It seems that your siblings are having fun at their camps and Noam is having fun at home. He has been sharing his space with Nosson and it has been really funny watching them interact. They are acting like brothers now and it is pretty comical, including the fighting, which can get physical (and hysterical) to watch. 

VV continues to not be the same without you, but I am getting along the best I can. Things are just different.

Anyway, babygirl. Stay safe!  I love you!

Until next time.

Love always, 

Ema

"You look happy"

“Your pics look like your happy again a lot, and your family is happy”.

I had to tiptoe my reply gently as this was a newly bereaved parent. I know what they were searching for. I spent Sonzee’s entire life with parents of newly diagnosed children seeking some sort of hope that maybe their child would be the one to defy the odds while living with a CDKL5 mutation. I didn’t want to crush their dreams early on in their journey, I knew deep down after time went by as their child’s skills or lack there of were more obvious, they would learn the reality, (plus there was a (slim) chance I might be wrong).  When the medical interventions became more profound it would be more difficult for them to convince themselves otherwise, better let them figure things out on their own. Not every child with a CDKL5 mutation is affected as severely as Sonzee was, not every 4-year-old with a CDKL5 mutation dies, it just happened to be our reality. So, I didn’t need to throw negativity into their face.  As such is the same with newly bereaved parents. They come seeking some sort of hope, some sort of comfort that life will go on, something, anything that says this won’t be as awful as I imagine, forever, right?!

Don’t be confused by a smile and being happy. There are happy moments, and the smiles when they happen can actually be real, but there is always a dark cloud hovering close by. The happiness and smiles are momentary, almost as if reality has halted and for a split second I am living in the moment, a happy one. A moment that will fade all too quickly as soon as the recesses of my mind remind me that I buried a child. Almost 3.5 years later there are more happy days than sad ones, but some days it is still hard to breathe. There are times when the happiness gets smacked out of me like the wind being knocked out of your lungs after a big hit, and I find myself gasping for air. Happiness exists, yes, it does, I can give you that. But will you ever be as happy as you once were as you stood wrangling all of your children after whispering threats in their ears to smile for the family pictures? No. Will you ever be as happy as you were sitting at your children’s school events when all of your children were alive and you were brought to tears by extreme happiness and amazement that your child completed a milestone? No. Will you ever be as happy as you were at your major life milestones when you were a complete family? No.

You will smile again. You will laugh. You will celebrate all the milestones that are yet to come, and you will for those seconds actually be happy. But then the shadow of what your deceased child won’t be celebrating, or the reminder that the last time you celebrated “event xyz” it was for your deceased child will pop into your mind and the happiness becomes muddled. The happiness is split. At least for me it is. I get happy, but there is a max to it. I enjoy life as much as I can, I smile when I am happy, and when I laugh it is genuine, but the realty is, I buried my little girl, there is a max to my happiness. Everything is harder and simple things are difficult.

Are we as a family happy? Yes, our family of 6 smiles and laughs and has an amazing time. We appreciate all of the moments that come our way. But don’t let the smiles and the pictures fool you, because the reality is, we are supposed to be a family of 7, so we are missing the piece that makes us irrefutably happy. 

180 weeks and 1 day

Dear Sonzee, 

Today is 180 weeks and 1 day since I last saw you. I calculated the numbers and it equals 3 years, 5 months, and 15 days, or 41 months and 15 days, or 1261 actual days. Time continues to pass, and life continues to go on. I feel so much further from you, yet I know spiritually you are close by. It isn't the same, but it cushions the blow a bit. It is like putting on some sort of safety equipment and then getting hit. Some protection is offered, but a hit still hurts, and the body still bruises. That is about where I am at this point in the journey.

There are still words I cannot find this far into the journey. There is still difficulty expressing the thoughts and feelings of your loss. This last week there have been days when your physical presence felt like another lifetime. So much continues to happen since you left.  All your siblings finished their 3rd week of camp and the Zupnick's headed home after being here for the last two weeks. It was such a fun time having them here, well for the adults, Noam and Nosson acted like brothers (which was really funny).

This last week we went to the waterpark at American Dream. I saw someone pushing a water wheelchair. I never noticed they had that the last few times we went. I wonder if by now you would have learned how to sit and could have sat in it without support or a seat belt. I wonder if you would have liked to be in the wave pool? I know the slides wouldn't have been your preference at all, but the hot tubs I know you would have loved.

We did some shopping this last week and ate a lot of yummy food. Your older brother is actually loving sleepaway camp this year. Your older sisters are smiling and seem happy at theirs. Meena hurt her wrist, but thankfully it isn't broken. The only other contact from your sisters is to send more money or specific items. Your brother got a pie in the face on his Hebrew birthday and is enjoying the sports and friends. He is trying to get us to get him an iPhone, but I think Aba and I are figuring out alternatives to that idea. Noam has been watching Monster's Inc on repeat as usual again this summer. He got new shoes this week from Bubby, along with a toy since she felt he wasn't being spoiled enough like your other siblings.

I worked last week remotely, I am so thankful I have the ability to do that so we can still enjoy summer here in NY. I wish you were here, but then I am reminded of your awful last summer here and the thought makes me exhausted. There has been a lot going on in my mind, but I will save it for another post. 

Hope you have a great week ahead little bear! Love you lots!

Until next time.

Love always,

Ema

179 weeks

Dear Sonzee, 

This last week the Zupnick's came to VV and are staying with us. Temima was dropped off at Camp Simcha and Nosson has been going to camp with Noam. Baby Meir and Baby Isla got to hang out on the 4th of July and it has been so fun having everyone in the house. We had a great time with uncle, Hay-Hay, and Isla visiting over the 4th. 

We have gone to Rita's twice now, and Noam is loving his cotton candy custard with fruity pebbles. There are some awesome new stores in Monticello this year for clothing. The girls and I have been getting our shopping in. It isn't the same without you here to store all the bags under, or have you as our shopping companion that is for sure.

Everyone seems to be adjusting to camp well. No bad news from Tzvi and the reports have been positive. Your sisters have written some letters, Meena wasn't thrilled over her bunk, but she is adjusting and appears to be having a great time based on the pictures she has been tagged in.

I had off of work this week because of the 4th of July, and that was nice. Aba finally put together the rockets that Tzvi won during a raffle years ago. We went to the baseball field and launched them and it was really awesome. We were all surprised at how far they went into the sky. It was a rainy day yesterday, so we also went swimming indoors.

The fire works during the 4th of July were insane as they were launched literally in our backyard by the lake. I was a scaredy cat and watched from indoors because they were so loud watching from the deck.  This week has been filled with friends and fun. Wish you could be here!

Until next time. 

Love you and miss you!

-Ema

177 weeks

Dear Sonzee, 

This week finished our first full week in New York, and Laeya, Noam, and my 2nd week away. Aba, Tzviki, and Meena came in yesterday, but not after a diverted flight that ended up making their travel over 9 hours. We finally got back up to VV around midnight and went to sleep around 2:30 after everyone was finally settled. 

This week I worked about 20 hours and Laeya and Noam hung around the house and played on their electronics or scootered. Most people were not yet up at VV because school didn't end until Thursday. Morah Lakie and her family arrived on Wednesday night, so I help situate them, we ate dinner together, and then they took a bit to get acclimated. 

Friday night we had Seri's family and the Blech's over for shabbas dinner, and then shabbas day we went to the Blech's house and hung out. We did lots of walking and relaxing. 

Anyway my love. 

Until next time. 

Love always, 

Ema

Summer 2023

Dear Sonzee,

We finished our drive to Uncle's on Friday and spent shabbas in New Jersey. Yesterday we officially arrived home for summer. The one you never got to see, but the one that would have worked so much better for our family when you were here. (Minus the staircase up, but nothing is perfect). Today starts day 1 of summer. 

Summer is one of those sneak up on me quietly in a dark alley at midnight sort of experiences. (Or what I imagine that would feel like because I'd rather never be in that situation) The drive was filled with hours alone with my thoughts paired with songs that would take me back to either your life or death. Driving on the backroads of Oklahoma listening to Taylor Swift sing "Wildest dreams" took me back to your infancy and the blog post I wrote in September of 2015 as a guest blogger. I still have those dreams of what life could've been had it not been filled with what it was for you.

More songs continued to stream while your brother and sister were otherwise occupied by naps or playing with electronics. "From where you are" came on during day 2 of our drive and reminded me of its music video with cars driving down a long road. My mind drifted and this sadness cloud began to hover over me. Just a bit before I was so excited for summer, and to be back at VV, and then all of a sudden the cloud opened on me. 

Summers were for you and I. It was our time together, no nurse, your older siblings were in camp and Noam was just a baby. You were our shopping bag holder when Malka and I went to Woodbury Commons. You drove your car along Townhouse Road. You were a staple on our walks. VV isn't the same since you have been gone. The main blessing was relocating to the lake. The first summer without you in TH 49 was difficult. The lake is a place you haven't ever been. I don't see you on the floor or around the space. There are no blankets you ever laid on, I can't place you in any of the rooms. You exist only in my thoughts, which is both a blessing and a curse. This summer I will be working during the days virtually, which will help fill the void of your absence, but it makes what was once my break from reality, a stark reminder of what my current reality is. 

I am looking forward to this summer with excitement and a heavyweight within my chest of all the adventures you and I will miss out on together. I know you are still very much remembered by everyone here and your spirit definitely fills the air, but it doesn't change the fact that we are embarking on yet another summer without having to worry about your tubes being pulled out, allergies that show up on PCR tests, and needing to ensure we have your medical one form for when we inevitably had to the hospital runs. 

I know you will come to visit us with cool summer breezes, and I will be waiting on the porch with a cup of coffee in hand to enjoy them. Be safe and have a fun summer, my love. 

Until next time.

Love always, 

Ema

Week 176

Dear Sonzee, 

This week finished our first week of being away. We had a lot of fun driving to New York and staying at uncles for the weekend. This last week we managed to travel a new route since we were going to Uncle's and not upstate. We got to drive through West Virginia, which is beautiful, and I found you a red bear keychain to bring to you when I go back home. 

We drove through Arizona, New Mexico, the top of Texas, Oklahoma, Missouri, Indiana, Illinois, Ohio, Pennsylvania, West Virginia, New York, and New Jersey.  We stopped to stand in 3 states at once, and I signed your name on the wooden area. We also got to see a Stone hedge replica in Missouri, and a leaning water tower. Your brother and sister were good sports and mainly watched DVDs or played on their electronics. We had yummy food that bubbie planned for us to bring to eat in the hotels, and we even got to stay in a Homewood suites, which thrilled Noam because he is obsessed with those Louis the duck books that we got when we stayed there in 2019. 

We drove up to VV yesterday and unpacked the house. It is year #2 at the Lakehouse and I love it! So much room, such a beautiful view. 

I miss you lots!

Until next time.

Love always, 

Ema

Recap of weeks 174 and 175

Dear Sonzee, 

We just completed day 2 of our drive to New York. We went a similar route to the one we did with you back in 2017. We passed by one of the fun spots where we spray painted the cars that were sticking out of the ground and Noam asked if he had been there. I told him no, but you had. Then I thought to myself it might be unfair that I won't ever take him, but also it falls under my rules of never repeating things unless we really have to. So today led us to a playground right before we entered into Oklahoma, and the brittle leaning water tower. We did have 2 Starbuck's stops and 2 gas stops as well. 

Aba is at home with Meena and Tziki. Meena is going to gymnastics 4 days a week until she flies to NY for camp. She got her roundoff-back handspring-back tuck, and it is beautiful. I am in aw of her strength and abilities. She is just so talented. I still can't believe she started 2 years ago. Tzvi and aba got back from Florida last Wednesday, the day after Laeya and I got home from New York. They went to watch a Stanley cup final game for the Panthers. It was an incredible game, and the only one they won during the last series. Vegas went on to win the cup, but Tzvi will have that forever experience. 

Last week was spent mainly finishing up the packing for camp and our roadtrip. Your siblings finished school for summer officially on Friday. I have been virtually working here and there to answer emails as we rev up for ESY to start next week. I am looking forward to summer relaxing paired with working, but I do feel like it is going to make summer feel like it is flying by. 

Anyway my love. I wanted to just send a quick update on things. I have another letter writing itself in my mind that might have to wait until tomorrow to get on paper. 

Be safe, have fun, and I miss you!

Unitl next time. 

Love always, 

Ema

June 1 1:52am (173 weeks and 2.5 days 44 min)

Dear Sonzee, 

I haven't written you a weekly letter for the last 3 weeks. The intention was initially there, and then after Shaina died everything went out the window. It's been a while since I have gone back to this place. The dark whirlwind of grief hole. The one that makes it impossible for me to fall asleep at night. The one that keeps the tears only a blink away. The one where it feels like I left something behind, and that leaves an enormous weight on my chest. It is the place where I want to be a hermit and not be around many people and keep to myself. It makes me exhausted in the way of not wanting to do anything more than the basics of life. I have worked so hard to get passed this place and to where I was 3 weeks ago...but it took less than a second (literally) to erase it all. 

Work finished up for me last week right before Shavuot. It was a nice holiday, I went and said Yizkor for you. On the first day, there was some drama at the shul because of a suspicious box. It ended after the bomb squad had to give the green light for things to continue. We had a mini block party at the house. I was thankful I had made 4 pitchers of cold brew prior to the start of the holiday!

We celebrated Meena's birthday during the last 3 weeks as you know, she turned 10, 2 times an age you never got to be. Tzvi had hockey tryouts and made peewee silver with most of his friends from last season. It is sad one of Tzvi's friends is no longer on the team, I am upset that his mom won't be on the bleachers with me.  I know I will see her around, but it isn't the same.  

We did an impromptu street cleanup Monday. We had to get our 2nd one in asap since we were due already. I asked Aba Sunday if we should go (it was 7am), and he said he wanted to wait until Monday because he wasn't in the right mindset because it was hot because we would go earlier Monday. The only thing accomplished was the mindset because we went at 9am and it was hot. Ms. Tara came with us and was a great help. Ms. Tara, Noam, Meena, and I finished from 7th-16th street in an hour and 20 minutes, and Aba, Tzvi, and Laeya did 16th-7th in the same time. It worked out nicely, and we got a lot of garbage. I do not understand why it is so hard to throw away cigarettes, but then I guess we wouldn't have any garbage to pick up. 

On Tuesday I flew to New Jersey. I have gotten to hang out with Uncle, Hay-Hay, and baby Isla (who as of this moment is officially a one-year-old). She never got to meet you and it still breaks my heart. I went to Meena's friend Sophia's brother's wedding tonight in New York. It was a beautiful affair, and I loved spending time with some of my VV friends. There was a girl in a wheelchair there and I wonder what her diagnosis is. I couldn't stop smiling watching her be pushed around in her wheelchair and dance with everyone. My heart broke when I saw her dancing with Sophia's brother, and while she isn't his sibling, it dawned on me that you won't be at any of your siblings' weddings. Aba said that you would be there in spirit dancing more freely than you could have ever been. It was an attempt to be positive about the reality. I kept in tears, but they were filling up my eyes, and they are coming out now. You missed Laeya's bat mitzvah, and you will miss the others, but I had not even considered weddings yet, and watching this girl dance with everyone pierced my soul. I hate when things like this sneak up on me. 

I hate that I have worked so hard to be where I was and it now seems like I have to start back over again. Why is grief so stinking hard?!  Why is it 1027392 tiny Sonzee-steps forward but an immediate catapult back? Maybe it is better that it all happens at once so when I eventually crawl back out of this Alice in Wonderland hole I won't (hopefully) fall right back down again. Maybe we can get a lot of the hard stuff out of the way now so I can have another 3+ years to build back up to before I fall back down? 

Sometimes your death mirrors your life spectacularly. I remember during your life someone once asked me why I was afraid to have hope or think positively about your future...and I remember the answer being because I was hoping it would make the fall less intense/less harsh/less far. In hindsight, I am unsure if it made anything any easier to cope with, but I won't know because I never had fictional dreams of a life I knew in my soul you wouldn't ever live. Sometimes I feel like it is the same with your death. Except I have allowed myself to get hopeful and to get comfortable in where I am at, so the fall down is extremely harsh. It feels like I am right back at the beginning and it sucks! 

Anyway baby girl. I am going to go attempt to get some sleep. I miss you lots! 

Until next time. 

Love always. 

Ema

Another double digit day

Dear Sonzee, 

It is 5:55am and I can't shake the thoughts in my head, so here I am writing you a letter to see if it helps. Yesterday was Shaina's funeral and my heart is just so heavy from it all. I feel like I have been transported back in time to 2020. It sucks. I feel all the feels and I know I look it as well because last night at gymnastics I was asked if I was okay. Telling someone I went to another child's funeral had them understand in a second. It sucks. 

Today, your big sister is 10. An entire decade we have gotten to share with her spunky amazing joyous spirit. She was 6 when you died. She had such a challenge even grasping the concept of death that after Aba went with you to the mortuary, she asked me when you and him would be home. I had to remind her that you had just died and wouldn't be coming home. She gets it now. It sucks. 

Today is the 2nd 10th birthday of one of your siblings we have celebrated without you. The only one you lived to see was on the same day you started to die. I didn't anticipate today to continue me on this whirlwind downward spiral of grief, but here we are. It sucks. 

Today continues the period where you and your siblings' birthdays begin to change to even years. You are the birthday that starts that trend; 5, 8, 10, 11, and 13. The lie behind those ages is that you aren't even 8, it is just what we wish you would be. Today the gap just grows more significant between child #3 and baby #5. I guess it is only fitting that you, baby #4 would impart such a significant gap. I choke when I mention your siblings' ages if I mention just 4 of you. 5, 10, 11, and 13. What happened between 5 and 10? That is a huge gap. You happened...literally, you came and you went. You are no longer present. It sucks. 

The next 10th birthday should have been yours. I know it is going to sneak up on me as quickly as these last 3 years have gone by. It sucks. Today shouldn't be the last 10th birthday I get to celebrate with a daughter of mine, but it is, and, it sucks. 

Please come and have donuts with Meena and her class and let her know you are still with her. I know she misses you and wishes you were still here.

I love you baby girl!

Until next time.

Love always, 

Ema

PS: This sucks. 

Life and death

Dear Sonzee,

It’s a little after midnight and it’s way past what my typical bedtime has been these last few months. My eyes hurt. It’s a combination of the tears I’ve suppressed, the ones that have managed their way out secretly, and the fact that it is way past my bedtime.

It’s hockey tryout weekend and while I was on a lengthy phone conversation with a mom of one of your brothers teammates, while also texting some others, aba walked in to tell me that a daughter of a family in the chabad community, died. 

While I’m continuing to talk with my friend and text about our current life happenings, hockey…and the drama that occurs with it, another child died. It’s a family in our community…one that probably even attended your funeral (I really didn’t keep tabs). I anticipated it to happen…as usual when a child has a rare diagnosis of any sort, especially cancer. Call me Debbie downer, I like to refer to it as realistic Randi. It’s also the only way I know how to process the death when it (undoubtedly) occurs. It makes the heart break “more tolerable” I suppose? 

My mind is mixed with numbness and intense pain. I’m conflicted. Am I crying over their daughter? You? My current status as a bereaved mom? The fact that someone else in this community will now understand my pain? Is it wrong if the tears are for you? Who are they for? What are they for? Why do children have to die?

I struggle. Do I attend the funeral? I can’t. I should. I want to puke at considering going to the same exact pavilion I sat under for your funeral and seeing another child being buried. But, how can I not show support? How do I support myself? Will it make it better? For who even? Which one of us? No. It won’t for either. We just both now get it. We are both members of this awful, shitty(sorry your siblings hear it all the time anyway) club that NO ONE WANTS TO BE PART OF. I just cant process this. 

Why?

I don’t get why children die. Why one of them was you. Why one of them is another child of someone I know. How does this keep happening??? 

I want to give her a hug while we both cry, because there might be some sort of comfort in that for both of us. But, maybe she doesn’t want a hug? Maybe she doesn’t want to process that there is an after part now that her daughter died. I hardly understand how I am alive still. But I am. She has other children, so she will find a way too. HOW though? How do we find a way? It’s not normal, it doesn’t make sense.

And then. Then life continues. Because, I continued my conversation about hockey and tryouts with a choked voice but I am an expert in covering up the emotions, so not enough that my friend knew I even got horrible news. Life continues because tomorrow your sister will have her girls pool party for her upcoming 10th birthday and your brother will have his last hockey skate of tryouts. That’s what happens. 

People die. Kids die. You died. But life…life some how, in some way, making zero sense of how life and death seamlessly merge together continues to go on…with a new normal…that constantly makes me pause and reflect at how surreal it is to continue living when your child does not. When you did not.

I love you so very much baby girl and miss you that much more!!! Please welcome Shaina with a big embrace and show her all you’ve learned. Keep her comforted if she’s scared or missed her home, and remember to always be safe and have loads of fun while you’re both pain free.

Until next time.

Love always,

Ema 

170 weeks and 1.5 days

Dear Sonzee, 

Almost 2 days ago we hit the 170-week mark. The weeks that end in 0 and 5 make the distance seem so far away, and then I am reminded that is because it is.  Yesterday we went to a Lag B'Omer event at an indoor trampoline/air park. We had no idea it was so close to the house. Aba still loves to attend the Chabad community events; I don't share the same enthusiasm.  As I sat there staring at Tzvi play basketball with boys, he was a baby with my mind pictured them all as babies and went back to that time in my life. There was a part of me for a split second that felt sad we don't have recent pictures of them all because they don't really run in the same circles anymore.  At the same moment as my mind felt this sadness over that fact, I remembered why I wanted to move away, why it is so hard for me to be around everyone from that community. It is simply, or rather less than simple, but factually, you. Being around that world takes me back to life with you. I saw Tzvi playing basketball, your sisters running around, Noam doing his thing, and then saw you sitting to the left in your wheelchair kicking your legs, sucking on your pacifier and I wanted to run far away.

The world we live in now doesn't involve your physical presence, and it also doesn't involve me having to unpicture you either. There is no spot in the kitchen you ever were pushed around by your brother. There is no room that was yours. There is nowhere outside that you sat. There are only the pieces of you that we brought with us and the physical things we have made from what you left behind. While it brings on a different set of emotions, overall, it is easier to not have it the other way around. 

Yesterday your brother played in his first soccer game. It was beyond adorable, and despite the 5 minutes before the game where his coach emphasized and repeated which direction he should run towards and which goal he was supposed to shoot into, he still ran towards the other goal. Then he stopped and was like, oh, wait. He had such fun, and we had fun watching him. Tzvi skipped hockey to come and support him. 

I have finished cutting and sorting the clothing for the last 3 quilts we will be able to make from your outfits. The only item I couldn't bring myself to include was the pink five shirt. I don't know what I will ever be able to do with it, but for now, it will sit in the pile of a couple more leggings of yours. 

Aba and I finally agreed to have a management company take care of Bear Pines. We officially went live last week. I am still unsure how I really feel about it, but at this point in our lives it is the best thing to do. 

I miss you lots! Hope you are having fun and being safe!

Love always, 

Ema

167 weeks, 168 weeks, and 169 weeks

Dear Sonzee, 

Every Sunday/Monday for the last 3 weeks I have wanted to write you a letter. Every time the day passes by I tell myself on Tuesday-Thursday to find the time. By Friday I tell myself that I will just write to you the following week....then like the one before, that too seems to come and go. So, today, on the first day of the 4th Month of May you will not be part of, I am forcing myself to write.  It also happens to be that it is my first Monday in 11 weeks that I haven't been in a class on Monday night, and that Noam's soccer practice was canceled due to the insane wind that was present today. Maybe that was you yelling at me to remember you. I promise I haven't forgotten about you.

These last 3 weeks have been filled with your siblings in after-school activities and me working every day of the week. I switched to working officially Full time, so I now work Friday as well, I am able to do my work for the day at home if I want, so that is extremely helpful. We have received 2 more "Sonzee blankets", so now Tzvi is the only one remaining to have one made. It brings me happiness with a tinge of sadness when I see your siblings snuggled with their Sonzee bears and blankets. I am so happy that they use them and love them, I am sad that they are the placeholders for what should be a sleepover with you. 

The last 3 weeks I have found myself telling people that I have 5 children and even mentioning that you are no longer alive. A few times I might have left that little fact out of the story and enjoyed the persons' flabbergasted responses wondering how I do it all. If I really think about it and give the grief component the credit it deserves, it is far more challenging to parent 4 alive children and grieve the 5th. I am not ready to really accept that reality though, it would mean I would have to admit how much of the grieving part I choose to push to the side. It is far easier to do that. 

Noam started his first soccer practice last week for a team. He was all excited to get cleats and shin guards. He picked out blue socks and blue laces for his shoes. Aba seems to be embracing the potential of a son of his not playing travel hockey. Maybe embracing is a bit of a stretch, rather I should say he is in the stage of acceptance. I haven't purchased any "soccer mom" paraphernalia just yet, so he is safe for a bit. 

Tzvi has 16 more days until tryouts for next season, his last as a peewee, his last not checking. I am unsure how my brain and heart are going to handle that future, but for now, I will just focus on his last season of being young. He has been attending some skills sessions and we even forced him to take a full week off. He survived. 

Meena has been getting into the grove of being in level 3. She was a bit disappointed because she really wanted to be in level 4 for her first competition season. The truth is, she has all of the skills, but all of the elders felt it was in her best interest to start out with the potential to medal as much as possible to build her self-confidence to start. After her official placement, she went through a mental block and needed a bit of a mental reset, she seems to be rebounding nicely. I am really excited to watch her next year, she is so beautiful to watch!

Laeya has been giving us a fun entry into parenting a teenager. She is keeping us on our toes and we are trying to balance out being fun, and strict while allowing her some new independence in some areas. It is of course confusing to know if we are doing anything right. We probably aren't, but what would she talk to a therapist about as an adult if we did. 

What have you been up to? Did you come to visit Laeya and me in Florida this past weekend? I noticed it was extra windy. We bought you a red/yellow seashell that says Clearwater. Aba attended a funeral today and I meant to ask him to bring it to you, but forgot. A student of mine from FBC went to heaven Friday. Were you there to greet him? Have you and all of your FBC friends welcomed him with open arms? I asked myself today if you all attend classes together wherever you may be. Sadly, we know there are more than enough of you now for that. Do you see Coach Ed at all? Do you still love to swim? What new things have you tried or been up to? 

2 days from now we will complete another month without you here. The days, weeks, and months keep speeding by. I wish I could see you in my dreams, any idea when I might be ready? I could use a glimpse into your world.

I love you and miss you, baby girl!

I will do better with my letters. 

Until next time.

Love always, 

Ema 

166 weeks

Dear Sonzee, 

Hi babygirl, how are you doing?  Last week ended with a big knot in my stomach that actually started to untie itself after we decided we were going to visit you yesterday. We sat for a bit by you, Meena wondered how I could sit on the black granite because it was so hot, but I am used to it from the past few years, and I know it can get much much hotter. Noam, Meena, and I painted you Passover rocks. For some reason, Laeya nor Tzvi were wanting to get out of the car, but I am sure they spoke to you from where they were. 

Last week started Passover, our 4th without you here. It sometimes still confuses me that it has been so long already since you have been gone, yet how at times it really does feel like it just happened. I wonder if that will ever change? I wonder if I would ever want it to? 

We had such a wonderful set of first days despite it being a 3-day yom tov. I honestly have never enjoyed one so much. We ate out during the day meals and Shabbas night but ate the Sedarim at home with both nights full to the brim with people. The kids swam with friends and there is a family from VV here renting the house around the corner and we have been having a blast getting to know them better. One of their daughter's is a cat whisperer and all 3 love her and all the love they get when she is around. Your siblings have been enjoying their spring break with them here. I have been reading a book series and because of the resilient parenting class I am part have, have been making an emphasis on taking care of myself and it has been great for everyone. I am so happy to be part of the program. 

We went indoor skydiving yesterday. I am torn on if you would have loved the wind in your face or would have hated it. I sometimes wish I knew about it prior to your death to have given it a shot, because I really don't know if you would have liked it or not. 

I am looking forward to the last days starting tomorrow night, especially since I am feeling so much better since having visited you. I have to make sure I have a yummy-smelling candle for you to light and to prepare myself for Yizkor. 

I have to run. I miss you.

Until next time.

Love always,

Ema

3 years 2 months and 2 days (165 weeks and 2 days)

Dear Sonzee, 

Today is 3 years 2 months and 2 days or 165 weeks and 2 days since you were last in my arms. This last week Tzvi had off of hockey until Sunday. Sunday was the first day in a week he stepped back onto the ice. He was so excited to be playing a pick-up game in the morning. He made some beautiful shots and played against and with some really skilled players. 

Meena gained her confidence back at gymnastics and has her beautiful round-off back handspring back! Monday started her first official Level 3 training day. Many of her friends went into Level 4, but it was decided by her coach and support by me, that it would be best for her to do Level 3 for her first year of competition. Watching her learn the routines I am confident this was the best decision for her. She is going to rock it! I see, and am hopeful it will be the case, that there will be a lot of shiny medals in her future. 

Noam finished off his 6 weeks of soccer and played a game on his last day of practice Sunday. Aba didn't get any video, but he scored 4 goals and apparently the score was 4-0. Aba is beginning to wrap his head around him playing soccer and not hockey. I am sure he will still attempt to get him into an ice hockey house league. 

Laeya finished up her babysitting course and started her CPR course. She is excited about future babysitting jobs. She has also been entering into true teenage land because she has been sleeping all the time. She grew 1/4 of an inch. She also got her cast removed. 

Today was farm day at FBC. It was nice to be back at Baldridge Farm, and only a bit challenging to be there. Noam, Laeya, and Meena picked so many flowers for the table tonight, which will be the 4th Passover without you here. That is a hard pill to swallow. Passover is always the start of the year for our holidays without you. I ordered flowers for myself, they look beautiful on the table as centerpieces. 

Anyway baby girl. Wish time could stand still. I have to run to get ready before the Chag starts!

Until next time.

Love always, 

Ema

164 weeks

Dear Sonzee, 

Today marked another week without you here. This last week was one of the harder ones. I usually know when a particular week will be more challenging. The weeks surrounding specific dates and memories are the ones I attempt to mentally prepare for. I anticipate how I might feel when I know I am going to be faced with them and buckle up. This last week though, I didn't anticipate it. I didn't put it all together until I was midway through it all. It wasn't until I was racking my brain, trying to analyze every little thing that was going on in my mind that it hit me while scrolling through google photos. March was never one of your better months.

Each year in March starting around the 15th for 2015 and 2016, the 20th in 2017, and the 17th in 2019 she was inpatient for at least a week. In 2018 she had two ED stayovers on March 10 and 28. My mind didn't remember on its own, but my body did. I have felt entirely blah, sad, extra depressed, extra grumpy, etc. Every negative grief emotion has been weighing on me. The cloud is just sitting on my shoulders. It makes me extra sensitive to people acting less than intelligent. It makes me take naive (stupid) comments by people who don't even know what they are saying to heart. It makes me feel guilty over things that I know deep down I shouldn't.

It is surprising that after 3 years of this journey that I wouldn't be more prepared for these times. Maybe I actually am because I was now able to recognize what was going on and give it a name? Maybe that is the moving forward of grief? Maybe this is some sort of celebratory Sonzeestone? I suppose if I am implementing the "being kinder to myself" lesson from the resilient parenting class I would tell myself that this is positive progress, no maybes. If it were someone else I would tell them how amazing it was that they identified their feelings and were able to recognize how challenging these times can be and that is okay. Their emotions are ok. Their responses to others are acceptable and it is ok. They have been through a lot.

This week someone made a comment to me that I haven't been able to really shake. I know it came from a place of them never having to bury a child. I know it came from a place of sheer ignorance and the inability to truly even consider how they might truly feel if they had a child die. (Similar to all those single men and women who will raise their kids so much better than the parent sitting at the fast food restaurant). Everyone assumes they know exactly how they would be if their child died. The things they would do so much better with their surviving children. The things they would or wouldn't do themselves. The strength they would have or the fact that they just couldn't survive so they would kill themselves (meaning those of us who don't must clearly love our children less). Everyone has an opinion. I wish people would keep it to themselves. I wish they would just take a moment and really think before they spoke about what a bereaved parent should or shouldn't do. If they have lost a child by all means I'd want to swap ideas on how best to handle situations, but if they haven't, I just want them to not talk. The comment didn't help my already wallowing feelings. In fact, it just made me feel unnecessary guilt. It made me miss you even more. 

I wish I didn't have to have you separated from my day-to-day life. I wish you were still here to have to balance out our life. I wish I didn't know all about grieving a child. I wish I didn't know everything I have learned because of your life and death. I guess I could be positive and say I am thankful for all I have learned, but I wish it didn't come with your challenging life and then death as a consolation.

Anyway baby girl. It is hard to truly grasp 164 Mondays have passed me by without a Sonzee snuggle or being able to hear your baby bear growl. It is hard to grasp you haven't seized for that length of time as well. (Thank you, Hashem!!)

Until next time my love.

Love always, 

Ema

Cop out?

During Sonzee's life when someone would outright state or even insinuate that their problems weren't equivalent to what our family was going through, I was always quick to stop them and let them know that it wasn't fair to compare. Everyone has their own challenges and threshold of what they can handle, and it isn't fair to assign weight to them. I always felt that comparing anything besides a comparable life was equivalent to comparing an apple with a pineapple. They share the category of fruit. Diminishing what someone else is experiencing doesn't make what challenges another person any heavier. They both are what they are to each of them. 

Being a parent of a child who died is a unique category. (Thankfully) There are fewer (but really too many) members of this group. I have found myself confused and not confident in the role of parenting after a child's loss. For the last 3 years, I have been confused as to what subcategory of life we have fallen into. Are we still a medically complex family? Are we a hockey family? Are we a typical family? Do we have the right to have accommodations made like they once were when we had a child who was medically complex and then dying? In what category do our surviving children fall? After all, children are resilient, right?! 

When the world returned to normal after Covid, so did we. As if we didn't experience the death of a family member. Unless you know us from before, or unless one of us mentions it after, you wouldn't know. We blend into life. The kids are in extracurricular activities, we travel, we spend our summers away, Sam and I both work, we smile, we laugh, and for all intents and purposes, we act as if we have the perfect family. Sometimes, but rarely our emotions are on our sleeves. Unless people want to travel the grief journey along with us, they too can pretend that our lives are normal. They can stay far enough away from the unimaginable pain they are thankfully able to avoid and tune into the part of our life that we outwardly display. 

Among fellow bereaved mothers, I mentioned my conflict with what is grief? and what is normal? I shared with others the everyday pain, the lack of energy, the lack of motivation, the anger, the frustration, the short tempers, the feeling of being a failure as a parent, the challenges with deciphering what is teen/child typical behavior and what is related to grief. I mentioned that I was torn on if the behaviors my children are exhibiting are typical or if it is grief. Is the grief a cop-out? Is it fair to place the onus on grief? I listed all of the struggles I have felt but didn't want to be told by someone who is not in a similar situation that "of course, it is grief, of course, you're experiencing all of those emotions, you lost a child"

It was at the same moment that I was speaking my thoughts aloud that I started to process the entirety of the last 8 years. The actual significance of parenting a child who was medically complex and whom we knew we would one day bury as a child, but didn't know exactly when. I had a million flashbacks of a life that went by incredibly fast that simultaneously took 4 years 11 months and 23 days of her siblings' lives as well. I listened as a mother responded to me about how she wishes she could surround herself with my bubbliness every day because maybe it would help her feel motivated. I listened as she said she was processing everything I was saying. I listened with tears in my eyes as she said, "but Randi, a cop-out?! Honey, it is not a cop-out, it is your reality, it is your life"

For the last 2.5 hours since she said that sentence to me I have repeated it in my mind while thinking about all those times, I shrugged off the weight of all we have endured. I have thought about the words while thinking about the fact that 3 years ago our children's ages ranged from barely 2 years old to barely 10, none even old enough to sit in the front seat (and due to height, all were still in car seats or boosters). I think about how not only did we have to deal with Covid, but we also had to deal with the death of a significant family member. We buried a child and sibling who didn't go longer than a month of her life going into a hospital. A child who spent close to half of her life in-patient at a hospital. I have thought about it all on repeat. There is no comparison to anyone who has experienced a loss of any kind. There is no it is worse because of "XYZ", there is none of that. But, also, there is no coping out, and there is no cushioning the reality. The reality is that there is no denying that things are different for us and they are harder in many ways, there is just no way to sugar-coat that. There is no coping out because the struggles we have had to face as a family are not normal, they do warrant some extra attention and some extra accommodations, but most importantly, they mostly warrant giving ourselves a little more grace.      

163 weeks

Dear Sonzee, 

As I mentioned in my letter last week, it was Spring break for me, but not your siblings. Meena went back to school on Thursday and I spent the day shopping with bubbie after we went out for lunch. Friday morning I went with a co-worker to the Queen Creek Olive Mill and it was so fascinating to learn about the olive industry while it was also a fun place to explore. We spent a couple of hours there and then I went to check in at the hotel for the weekend in Gilbert due to Tzvi's final hockey tournament of the season. His first game was 5:10pm Friday night. 

I will recap the weekend, although I am fairly sure you played a role in the outcome of it all. Your brother isn't exactly happy with it, but I personally think it was for the best. As you know he lost the first game Friday night. Saturday during the day his team played at 1:00pm and they ended up in a tie. In the evening game they lost. Two situations occurred that could theoretically be debatable, but it is 12u hockey and not the NHL. 

During the 1pm game while our boys had 3 boys playing against 5, one of the boys made a shot and it was called "no goal", however, it looked like it clearly went in and that it was scooped out. Had that been counted, they would have won that game and then had a chance to make it into the final championship today. But, then during the evening game, the other team made a shot, it didn't look like it crossed the line, the goalie had the puck and they called it a goal. Nurse Paige came and Tzvi's streak continues to score a goal whenever she comes to a game. I love that she is still part of our family. It makes me smile knowing that I kept my promise in my funeral letter to you that I would keep in touch with everyone you were close with. The game sadly ended in a 2-3 loss for us, with that team securing their spot in the final championship game and us in the consolation game.

To say our boys were devastated would be an understatement, but from some of our parent perspective, we felt it would be better to end the season on a potential win than to go out on a most probable loss. Fast forward to today, when our boys beat the team in our final game of the season to end on a high note. (Minus your brother who was upset he didn't play his best and was still upset they weren't in the finals). In the end, the team that won the finals was the underdog (as the rest of the teams in our bracket were compared to the #1 seed going into the tournament). I am not quite sure our team could have pulled off that win and then we would have had a loss to end our season. 

I personally feel you played a part in this arrangement, as the way it worked out had to be orchestrated in the manner it did for the teams to play in the games they did. I thank you and appreciate all that you did. Your brother asked if you could have the other team win, why couldn't you have his team win? It just wasn't what was meant to be. They came so far as a team and I am excited to see where the next year will take him. 

This has been one of my favorite seasons on a team. No drama from kids or parents. Just an entire season of fun, despite the losses. I am sad it is over, but excited for a few weeks of hockey not being the priority of the home. He has a little less than 2 months until tryouts, so I have a little less than 2 months to get my cortisol levels and ability to cope with the chaos of hockey tryouts in order.  He has his team party and awards ceremony coming up and both are on a Sunday so we are looking forward to that.

Next season will be his last season of no-checking, his second year of peewee hockey. It will be Meena's first competitive gymnastics season and our first divide-and-conquer sporting season. The official VV summer countdown has dropped below 100 and I am beyond excited to be back in NY for a couple of months. It is insane that we are more than halfway through March. I hope you have a great week ahead. I love and miss you, baby girl!

Love always. 

Until next time, 

Ema

162 weeks and 2 days

Dear Sonzee, 

The last time I was able to sit down and write to you was 10 days ago. I swear the days go by quicker every day or the days are just getting shorter. Being that we are getting closer to Spring, I am going to go with the time is just moving at the speed of light. 

Last week I got a text from a co-worker who does early intervention, it was a picture of your street sign!

I then decided to drive down Bethany Home Road to get the other sign and also try and grab another view of this one. 

I need to schedule another cleanup for the end of March or early April. 

I finished my 4th week of the resilient parenting program that is paired with ASU and Hospice of the Valley. I am working on doing 1:1 times with each of your siblings, we have a family game night once a week, and I have to do mindful breathing, and comfort activities for myself. The idea is to set the foundation to be able to not only work on my coping with grief but so that the kids can work on theirs. So far week 2 of the 1:1 times has been successful. We have done family game night 2 weeks in a row and that has been great as well. Your siblings are enjoying all the above. (Or appear to be at least). I have to also "catch them doing good" and comment on those things as well. This week's new addition is active listening. I am really hoping this class changes the dynamic at home, and so far it appears to be doing so. 

Aba moved his stuff out of the warehouse so he could rent his space to another company, meaning so much stuff was brought to the house. I reorganized the garage and we now have a perfect shoe location so the shoes don't enter the house! Jackpot! In addition, I finally put up the purell holders, it makes me smile thinking of you!

This week is my spring break (not your siblings). I have spent 2 days with Meena because she has been sick, but I have gotten a lot of things accomplished at home thankfully despite that. I have sent off a lot of clothing to be made into blankets. I finally even sent off my college shirts! I am doing Tzvi's first hockey jerseys from the last few years of travel and Laeya's baby clothing. I sent your items off last week. I am very excited to finally be getting these made! They are all long overdue. 

Laeya finally got the cast on her wrist! It will be 3 weeks in this and then a removable cast. All in all, it will be close to 8 weeks or so of some form of splint/cast when she is done with this endeavor. She went big this time!

Tzvi has his state finals this weekend in Gilbert. Please stop by if your schedule allows it! We are hoping to cause an upset and win first, we shall see how it goes!

Love you, baby girl!

Until next time.

Love always, 

Ema

3 years 1 month and 1 day 12 hours and 1 minute

Dear Sonzee, 

Friday was officially 3 years and 1 month that you left. It was also the day after our school community learned of a horrible house fire that at that time took the lives of the father and two children. Over Shabbos the remaining two siblings also died. 

It took me a second to process what I heard when I spoke to aba Thursday afternoon. I then saw an email from the school with the same information. Naturally I panicked thinking of your siblings. The amount of child loss they have experienced in their short lives is nauseating. The amount of sadness and loss in general makes me so sad for them. Auntie A and I didn't experience the type of loss they have had by their age; it isn't fair. 

I tried to intervene the news being told to them the way the school was planning, but I wasn't quick enough to school and each of your siblings handled it the way I anticipated they would. My biggest concern is always your older siblings because they don't react in an extroverted way. Instead, Tzvi will make comments here and there and just avoid any conversation about it. Laeya will bottle it up inside and slowly at night, always late, she will begin to share insight into her mind. Meena on the other hand was crying the minute she got out of school and ran into my arms. She spent the rest of the day an absolute mess. Her lack of ability to cope with all of the big emotions made my ability to cope with managing my emotions and trying to handle hers worse than zero. 

I sent an email to the head of school. I don't place any blame in how the information was given. I don't envy the position he found himself in, but I do feel (selfishly) that due to our family's specific circumstances surrounding child/sibling loss, I should have been able to intercept your siblings to discuss it with them and be there when the news was delivered. 

The one child who attended the school currently they all knew and spoke with a handful of times, and one of the brothers was in Meena's class during his younger years (she shared some stories over shabbat dinner with us). The challenge with this situation is that while most of the other families are horrified over what happened and can't wrap their heads around losing one child much less four (and their father), our family has lived the loss of one. It hits our family differently. It opens up hidden compartments in each of us that we have either openly or secretly been working on over the last 3 years and 1 month (and 2 days) since you left us. 

For me, my initial thought was relief. How thankful I was that this father didn't have to live with the loss of any of his children (and it would have been all). My heart doesn't want to experience that ever. My brain knows how horrific that would be, there is no need for me to have to imagine. It would be 4 times worse than what I experience every single day without you here, there wouldn't be a point to continuing life. I appreciate Hashem sparing this father that type of pain. I have spent the last few days processing everything. I found myself back in the stages of numbness. It is just horrible, despite the beauty of them all being together in Gan Eden. 

Tomorrow is their funeral. I debated going and was then told/warned that I even showed up I would be escorted out. (Sometimes I am thankful for the friends I have). There is guilt looming over me, but I also know that I am incapable of attending a child's funeral and not being sent back to day one in my grief. Three years, 1 month, and 1 day ago I sat in a surreal world not even comprehending it was you being buried. I spent the next year numb and in this weird denial position. (It was more of knowing you were dead but with an inability of blending that knowledge into everyday life). Those moments have (thankfully?) become less. Three years, 1 month, and 1 day ago I started a new life. One that would never include you again. I am afraid (although it feels so selfish) that I would be sent back to that time. I can't go back there. I can barely be where I am at now. There are other selfish reasons I cannot bring myself to go. As usual, with grief, your father and I are different, and he will be attending. He thinks it will be good for him. (Whatever that means). Meena also wants to go. Laeya hasn't decided yet. Whoever wants to go can and who doesn't won't and that is ok. 

I miss you a lot little bear! I'd ask for you to come and visit, but lately I feel like you've been blessing us with your presence in the form of water and I don't know if a flood of any sort is really necessary this week. So, maybe we can compromise, and you can meet me in my dreams? I would love that! (Plus, to this day it has never happened for me, and I am envious you went to aba).

Until next time baby girl!

Love always, 

Ema