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