If happy ever did exist...

Hi baby girl. 

How are you doing? What have you been up to? I can almost hear you teasing me, “You know how death is, Ema, I’m really busy.” I know I don’t need a reason to write to you, but you probably already know there is one. My brain has been stuck on repeat these past two weeks, and yesterday it all came crashing down. So, I decided it was time to write you a letter.

When you were born, you spent eight days in the NICU. While I was there, I received a gift package filled with thoughtful items from a mom who had lived the NICU life herself, someone deeply woven into the special needs community.

A few weeks later, when we were admitted to the PEMU room at PCH for monitoring, we had our first visitor. It was her, the same mom who sent that package. She came in with so much warmth and understanding. I remember getting up to use the bathroom, and she held you close so I could take that short break without panicking. Just before leaving, she held you near her face and whispered, “Do something, or cut this shit.” And no sooner had she walked out before the door even closed, I pulled the seizure alarm cord for the first time. That was when we finally had confirmation.

In the weeks that followed, I remember so many phone calls and texts with her, her optimism ringing through my fear. “At least it’s seizures,” she’d say. “You can treat seizures.” She was the one who understood, who always had words when I couldn’t find my own.

And then, the day you left me, I left that world. Partly by choice, partly because those still living that life don’t really want someone like me in it. I became the mirror no one wants to look into...the living reminder of what could happen. And for me, they became the reminder of everything I lost. It’s mutual, really. Too painful for both sides.

Five years, eight months, and twenty-five days after your journey began, she has now joined mine. My heart feels shattered for her, for us, for me, all over again.

Because this is what happens, every single time.

People who haven’t lived this life say how sad it is. They say they “can’t imagine,” because truly, they don’t want to, it’s too much to even picture. They’ll grieve for a bit; they’ll be sad for a while… and then life will go back to normal for them. Their children are still alive. Their homes are still full.

But for us, the ones who carry this forever, there is no going back. We cry in the shower. We hide our tears from the others. We wake up every day under the weight on our chest. We argue silently with ourselves about whether to help another parent, knowing the emotional toll it takes. We debate medication just to get through the day. We live life divided into “before” and “after.”

We try to figure out how to live again. How to find meaning. How to feel anything that resembles whole. We take family photos that include a grave. We'll make every song relate to you in some way. We list your age as if you’re still here, just to avoid awkward silence. We don't always mention that we are part of a secret club and sometimes that leads to horrible guilt, but the alternative requires energy we just don't always have. We imagine what you might be doing in a place no living person can ever understand. And every time another child dies, we lose you all over again.

So, here I am. Back in the hole I was just attempting to crawl out of after a challenging 3 weeks, sitting with you to hopefully allow you to help pull me back out. I still don't know how it works, but please go look for Avi and show him the ropes. He's a lot older than you, but you have more experience in his new world. Tomorrow he'll become a close neighbor to you. Aba will go and see you; I am sorry I just can't go sit under that pavilion. I love you baby girl!

"If "Happy Ever After" did exist
I would still be holding you like this                                                All those fairy tales are full of shit"

Until next time. 

Love always and forever, 

Ema

Five years

Dear Sonzee, 

It officially happened. You have been absent from our physical presence for more than 5 years. I still cannot wrap my head around this. It seems impossible, yet at the same time it makes perfect sense. After all, so much has happened since you left us. There is truth to the whole concept of life stands still after your child dies, but it seems to only affect the parents, because for everyone else, life just continues. There was a definite divide of life before your death and life since. Life since seems to go by at the speed of light but yet in a slow motion form. It really doesn't make sense when I try to assign the motion words. Maybe if you could imagine the blurred images of a slow motion movie but the background is going a million miles a minute with streaks of light. 

Somehow we ended up 5 years post your death. I just cannot comprehend it. I thought I had this whole grief thing figured out somewhere between year 3-4, but Mrs. Penny reassured me after my last mini break down that that won't even come into the discussion until maybe year 8. Life wiithout you has certainly changed, but it is not any easier. I have just managed to figure out how (althought sometimes I doubt it) to wake up every day and plaster a happy smile across my face and act like I am just the jolliest human around. I probably fool 90% of the people I come in contact with that my life is perfect. That I am lucky, because I have 2 boys and 2 girls. That we are fortunate because we can afford to have our kids in all of these extracurricular activities. That aba and I have this perfect marriage that didn't almost fall apart because of having a child with complex needs who physically up and left us. That we get to travel and take amazing family pictures. But, anyone who actually knows us knows that all of these statements couldn't be further from the truth, but 5 years post your death and we have a certain rhythm that makes us look like "we've got this" (we don't).

Year 5 brought less people (thankfully) sending the once a year text saying they were thinking about me. In fact, the same people who reached out to me today reach out to me constantly through the year. It makes me feel less angry to be honest. Morah Zupnick texted me, "Sending you lots of love and protection from the stupid idiots who are going to text you when they haven't in a year". Maybe year 5 finally has weeded those people out. The ones who I know mean well, but yet frustrate me because why only think about me today? Why not realize I am feeling the same horrific pain and loss during every. other. single, day. of. the. damn. year????? Today is just an in our face reminder of the obvious fact that you are physically missing from our lives. Whether today happened or not we would still feel your absence, and we do. A LOT. The same will hold true for Thursday when we have to do this dreaded day again for the 8 of Shvat, but even worse because people will undoubtedly send me birthday wishes as well for my hebrew birthday (as if that's what I want to think about on that day!!!??). I can't say these thoughts directly to people, but hopefully they read this and feel less insulted at my stance? Hopefully they can appreciate the mixture of emotions that I struggle with on the daily. The ones where I put my feelings aside to make others feel less awkward or better about their wishful attempts of being sincere. I know, it's both an issme and a personal problem, but I am working on it.

This whole year 5 of your absence has finished out with a lot of change that I am not ready to share just yet, but it added a nice extra knife twist to your absence. It no doubt came from you, but it isn't 100% easy for me to accept just yet, but like all else, in time it will be. 

I hope you like all of your new rocks and the new setup of your stepping stones. Hard to even fathom that next week you will be turning ten. I am working on your present currently and I hope you like all of the changes and organizing I have done with your space. You are so very missed baby girl. I know you visited Nurse paige, and if you are ever so inclined, I'd love to have a glimpse of your new life. Or you could just let me know a little about it, like who your friends are, any drama you have experienced, the milestones you have achieved. I would take whatever it is you could share with me. 

But until then and until next time. 

I love you baby girl!

Love always, 

Ema

2024

My hands hover over the keyboard, my mind empty of thoughts. I'm stuck, at a loss for words. This feels fitting because, since I started this blog in 2015, 2024 is the first year I've written only seven entries. The more I try to focus on finding words, the more tears fill my eyes, and that familiar discomfort in my chest grows.

Maybe it’s because there are no new words to share, no brilliance to offer, and nothing more I can say to myself that hasn’t already been said a million times since she died.

2024 marks another year that Sonzee never started and will never finish. There were no new milestones to celebrate, no fresh photos to share, no new moments to commemorate. We did, however, honor her with street cleanups and the completion of a new playground in her name.

2024 also brought more painted rocks for Sonzee, some of which have faded after four years, the paint and messages worn away. The cemetery continues to grow, with more people and more rocks scattered around. I wonder, when new visitors walk among the graves, if they know the rocks originated because of our little Sonzee Bear.

This year, Sonzee received more keychains and gifts from our family travels—perhaps the most since she left us. Keeping the top of her gravestone orderly has become more difficult, but I do it anyway.

2024 hasn’t made it any easier to answer questions about how many children I have. With confidence, I say “five,” but it’s the details that bring hesitation and inner conflict.

This past year, I’ve allowed myself to sit with my grief more often, though I still tend to suppress it, to my own detriment. I’ve felt more sadness, more emptiness, and more silence in my mind because of Sonzee’s absence. But I’m still uncertain what to do with all of it.

In 2024, I accepted that there’s no "fixing" grief. I came to terms with this in the same way I had to accept that a cure would never make Sonzee an active participant in her own life. I accept grief for what it is: permanent, ever-changing, and woven into the fabric of my existence. I accept that it will influence everything I do, every day. I accept that others, even family members, may never fully grasp the depth of grief’s impact. And I accept that there will always be a void—one that nothing can fill. It’s larger than everything else, and though it sometimes shrinks, it is never gone. It can swell at any moment, without warning, and consume everything. I accept grief, but I don’t like it.

2024 was the last year Sonzee should have been in single digits. It marked the beginning of “10 Weeks Until 10,” and I started leaving painted stepping stones at her grave. I hope, wherever she is, she’s able to step on them.

2024 is also the last year she lived longer than she will be gone. A concept my mind struggles to accept.

2024 was simply 4 years 10 months and 29 days without our little bear.

Grief Depression

Last week, we celebrated our fifth Rosh Hashana without Sonzee. Sitting by the window the first morning, my brain started to write like it used to. Three days later, I hope to remember what I need to get out of my mind. 

I spoke to someone last week who mentioned they were comfortable enough with me to make a comment that when someone is depressed they just want to give them a list of things to do because that will occupy their time and they won't have time to be depressed. Ha! I thought to myself if you only knew what the true weight of depression feels like. I cannot speak for typical depression, however, I can speak volumes for grief depression. That is if there is even a distinction between the two? I honestly do not know.

It has been 4 years 8 months and 3 days that I have been living with grief depression. I am unsure if that makes me an expert or not, but I feel like it gives me some merit. It has been 3 years 2 months and 3 days since the unspoken time limit of my grief should have ended. (You get a solid 18 months to actively, openly, and without fear of judgment truly grieve your child, after that, the timer on the invisible clock beeps, and the grief and depression of your dead child disappear, as simple as saying "grief and depression be gone!") JUST KDDING, they don't actually disappear, (SURPRISE!) we bereaved parents just become pros at keeping it bottled up, safe for only specific people, or only letting it out accidentally when the emotions become too overwhelming to suppress. 

The truth is, my days are beyond busy. Between working full time, taking care of a home, and working the evening taxi driving shift for the 4 remaining children I have to their various after-school activities you would wonder how I could actually have time to add grief depression to my list. I assure you, like 1000 pounds of bricks sitting on your chest it is there. Suffocating its recipient to the core, making it beyond difficult to literally put one foot in front of the other. There is no real choice in the matter. Can you imagine telling your boss that you aren't coming to work because the weight of a collapsed skyscraper is sitting on your chest not allowing you to move? Do you think your living children would understand if you said, "Sorry honey, no gymnastics today, your dead sister has tied me down to the chair and I am unable to get up to drive you". Grief depression at its lightest is a 5lb bag of flour sitting on your chest. You shift it around in your arms for yourself to make it appear easier to carry, but the reality is, it is not. In the words of a favorite princess, "conceal, don't feel", becomes a daily mantra. 

Life continues to go on and quickly at that. There is little time to wallow in the grief depression, and sometimes wallowing is even too exhausting, but if you wanted to know where I will be for the next week of my fall break, it will be basking in the depression of my grief on my couch playing FarmVille and allowing the weight of the fact that I buried my almost 5-year-old little girl 4 years 8 months and 3 days ago sit right smack dab on the center of my heart, because grief depression is heavy and sometimes you need to relearn how to carry on with it because it moves itself right on back to the very top of the to do list. 

2023

As tonight turns into tomorrow, the 3rd full year will be complete without Sonzee physically with us. It has been 4 years since she was last alive at some point in a year. Tonight, 5 years ago was the last New Years eve Sonzee was alive. My last paragraph of my 2019 post leaves me, still, hollowed to my core, as it has done in other yearly recaps starting in 2020.

It is hard to say whether 2019 was Sonzee's worst year, she has had so many rough times during each of her years, I cannot say one full year was actually the worst, but I can say this year was certainly not her best.  I can say with assurance that as we close out this year, it is the one that leaves me feeling the saddest about where we currently stand, and extremely hesitant for what will come.  I feel like 2019 took a lot from our little bear, and along with it a lot of my faith, hope, and what limited positive outlook I might have been hanging on to.  2019 is another chapter I am glad to be turning the page on, but if I am honest, scared to be doing at the same time.  We have enough years under our belts to know better than to ask for calmness or for CDKL5 to be kinder to us, so for 2020, I will ask that whatever happens, I am able to see and truly believe happened for the best.

2023 was the year that I wrote my fewest blog posts. 46 (counting this one) to be exact. It was a year I learned the truth of that fancy saying I would say is my mother's most famous quote, "less is more". I wrote fewer letters to Sonzee on her blog this year than ever in her life and death, but more were written in my head. I shared less about my feelings and less about my grief, but the emotions of my grief were the largest they have ever been. I visited her grave less this year but felt her closer to me more than I have since she died. 

In 2023 I learned that although I have a lot of her items, the tangible items I have bring me less comfort than they once did. This year I truly learned she is with me more often than I want to give her credit for (or rather give myself credit for believing). I learned that signs are always there if I let go of the fear of others' opinions because I need to remember unless you have buried a child, you really do not get it. Clouds in the shapes of hearts and rays of light in a picture might be crazy for others to believe are my dead daughter, but it doesn't matter, because in 2023, I realized if it helps me that is what matters. 

2023 was a year I spoke about her less, but when I did, I didn't feel my 2022 or earlier need to justify her death. She was 4, she was my 3rd daughter, she was my 4th child, she died, and that is horrific. I learned that I don't need to soften anyone else's blow or ease their discomfort by stating that she had a genetic disorder. It isn't any less tragic because she never was typical, I don't know why I ever felt the need to make her death sound any less awful than what it is. 

2023 was the year that I was able to talk about her more with less tears. The tears still come, the pain is still present, but a lot of the time, talking about her over the last year just made me happy. 2023 was a year I was still presented with challenges when asked how many children I have. Sam seems to find it so easy to simply say, "Four kids here physically, and 1 in heaven". Huh, so simple, yet still for me, so complicated. 

In 2023 I became less angry about her loss and sadder about her absence. Avoidance was a significant part of 2023 because the pain is still present. I am still not ready to fully allow myself to grieve when it hits me, and I only sit with it for a little before I tell myself another day. Less is more is certainly true when it comes to grief. The less you allow yourself to do it, the more it returns. Maybe I'll learn how to accept the grief in 2024?

In 2023 I spoke to Sonzee's epileptologist and 2 of her 1:1 nurses, and many others who were part of Sonzee's life, honoring the message I read to her the day she was buried. In 2023 I introduced Sonzee to people who now bring her up to me and feel comfortable talking about her. 

To finish off my last letter of 2023, I will quote myself from the same letter referenced above. 

While I wish I wasn’t writing you a letter I am unsure you can even hear, my words will never be able to fully express how extremely grateful I am that you are no longer going to have to experience a millisecond of discomfort again, and that is what is going to be my forever comfort and allow me to put one foot in front of the other, because knowing you will now forever be at peace is worth every ounce of pain that will come my way.

As we close out 2023 and enter into a year that will become the last year of her death that will be less than the number of years that Sonzee was alive, I hope and pray that I will find a way to cope with this challenging reality. But I will continue to be indebted to Hashem, that she is living freely among many of her friends and will never experience any level of discomfort again...and so for that, I will gladly continue to take all the pain that comes my way as I struggle to live without my little bear.

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

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

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 

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

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.      

2:07am

Dear Sonzee, 

Yesterday when your siblings came home from school they excitedly put on rollerblades and went skating. Your little brother just got his first pair on Wednesday, so it was day two for him. They all kept rollerblading into the house which was making me insane and sent them all back outside. I was filling out camp forms and I swear your twin girl had just been told for the umpteenth time to get back outside when I heard her screaming for aba. I ran outside as I heard aba scream back "what happened". I don't know what I expected or thought, but I know a flash of panic over your brother being hit by a car came into my mind. I got outside and aba was rolling Laeya down the street supporting her underarms and saying she broke her arm. I know I asked, "why can't she skate?" The answer was "I don't know". I swear it felt like it all happened in 30 seconds or less despite how much happened. 

A few phone calls later and our support system was fully in place. Meena was going to her gymnastics private and someone else was going to pick her up, Noam was off to one of his besties, aba was off to hockey with Tzvi and I was on Laeya to PCH urgent care duty. Morah Zupnick and I were playing the game of beating the urgent care posted times. We won. They said 30 min when we got there and we were seen within 15 minutes and were sent on our way to the PCH ER within an hour. It was between the time they explained her wrist fracture and displacement and us waiting for them to call the hospital to let them know we were on our way that I realized I was going to have to walk through the sliding doors at 1919 E Thomas Road. 

I don't remember the exact date of the last time I walked through those doors. I don't even remember what month it was. Like riding a bike, I drove to the familiar exit and I made a right, a left, and a right to find a parking spot right in front of the ER. She was assigned an orange folder, that was always what you got. I know there are more urgent cases besides a displaced fractured wrist, but they felt because of our time at urgent care we should have a "fast pass" to triage. We were in a room within an hour. I visited the same Starbucks I had visited so many times at night before it closed, but the coffee tasted gross. It didn't matter, another coffee was soon to be on its way to me, also with a hot chocolate for your sister when she would wake up from the sedation. 

The halls look the same. It is hard to believe it's been 3.5-4 years since I was there. It is hard to believe I didn't know anyone, and no one knew about you. I am not a frequent flyer anymore. (Well, except for the ortho department). The tv channels are the same, the movies were also. We watched inside out and Laeya had her amazing laugh. She, much like you had horrible veins and it took a blown vein and multiple people to get an iv into her hand. I referenced you a few times, but I didn't want to make this about you, or me. I put on my Sonzee bear brave face. Your sister was a rockstar the entire time. 

For the procedure, they moved us to one of the trauma bays, you know, just in case. I had a mild inner panic attack over the rare complications. I wanted to vomit with the number of times the doctor said it was unlikely. (so was CDKL5). I didn't say that aloud, but my inner thoughts screamed it too many times. I couldn't sit still, but with your sister finally calm and her blood pressure finally normal I was outwardly composed. Thankfully you never were in the trauma bay she was taken to. After they gave her the sedation they took me to the waiting room. I reminded myself she was going to be okay. I played in my mind the potential chaos that could occur while being afraid of hearing a code being called. (It turns out she only paused her breathing for a few quick seconds and with oxygen her levels rose right back up)

The worst part of the night was after they set her arm and had to do an x-ray. I was standing against the wall in the hallway when a hysterical woman walked by, followed by a few other members of her family. Staring straight. Holding a box. I recognized the cries. I recognized the lost look. I saw the father a few steps behind. He held a blanket, smelled the drops of blood and walked to the sliding doors. I took a few breaths, forcing myself to not run to any of them to wrap my arms around them and cry with them. I wanted to scream that I understood their cries. I remained still. I walked back into the room when I was allowed and paced some more. I did my usual make small talk and asked the nurse how often that happens. She said, "not often, about two times a month." I thought to myself, two times too many. Your sister asked what I was talking about, and I didn't answer. She said, oh you can't say. The nurse then said, "something that hopefully you or mother never have to know". I said, "well, I had a daughter, she had a sister, it didn't happen here, but on hospice...and I really wanted to go and hug that mom". The nurse spoke her sympathies to me and I swallowed my tears and emotions. Your sister was adorable and funny. The nurses and doctors loved her. 

I won't ask why it all had to happen last night. I will try not to wonder why out of the two times a month, one of those had to be the same exact time that I was in the hospital. I am too emotionally exhausted to wonder what the purpose of last night's events was. I thank you for watching over your sister and giving me an ounce of your strength to keep myself together for her. I miss you. I love you. 

Until next time. 

Love always,

Ema

158 and 159 weeks

Dear Sonzee, 

It has been 9 days since my last letter to you. It seems like so much longer. I am so sorry. I hope you know that the lack of letters is by no means representative of the number of times you are thought about every minute. It would be impossible to write you so much, and, you would most certainly roll your eyes and be annoyed if I did. 

The last two weeks have been filled with your siblings' hockey and gymnastics, a lot of work, your birthday, and my slow return to normalcy after the last 6 weeks. The latter is the main reason it has taken me a bit to write you a letter.

After both your Hebrew and English birthdays my body collapsed. It was as if all of the emotions of the last 6 weeks were finally able to be released. It has taken me about a week to mentally get back on track. I wish I could find a way to make this situation make sense. It is just after 6 weeks of being stuck in the grief trenches, the sky begins to lighten, the clouds begin to part, the sunlight begins to peak through, and eventually, the normalcy of what has become our new life returns. 

The typical grief remains. It isn't as intense all at once, it goes back to just coming in waves and spurts. It goes back to catching me off guard and bringing mood swings at a more steady rate. It returns me to an average level of being able to "tolerate stupid" and manage to parent. 

Meena has mastered some amazing tricks at gymnastics. On the floor she can do a running front flip, and a round-off quadruple back handspring. On the beam, she can do a cartwheel and some other fancy-named things. She is really working hard on getting her Kip on the bars. She is hoping she can get it before official team placements happen next month. I hope for her sake she gets it. She is amazing to watch and we are just so impressed with her talent. It is hard to believe she started not even 2 years ago. 

This weekend Tzvi had his President's Day tournament. He and I spent the majority of it in Peoria. His team is not only on the younger side, but they are also on the tinier side. They did amazing not giving up, even when us parents wanted them to. They played an elite team whose program has sent about 15-20 kids to the NHL. Tzvi's coach said to remember their names; I think we all will. They were impressive to watch, but the boys were very much out of their league. We thought that maybe Tzvi would pay a bit more attention in school now that he has had a taste of what talent goes to the NHL, but instead, he said he will just work harder. Okay!?

Tonight was the first class of a pilot program for ASU and Hospice of the Valley called Resilient Parenting for Bereaved Families. I was asked to explain your death, my biggest challenge since, and something that has helped me to cope. I started with a deep breath and mentioned how I don't like to relive your death, I don't like to talk about your last weekend, but I did it, and I allowed myself to cry. I mentioned that the minute you left us was actually peaceful in and of itself. I said it is so hard to pick the biggest challenge, but I settled on it is how I am not naive to think your siblings can't die also. I said that the New Song grief group and friends have helped me to cope, but despite feeling like a failure for needing more help, I admitted that after the first 18 months on this grief journey, I realized it was okay to need the help of medication and for the last year and a half since I started to take it, it has made life manageable, it has allowed me to function, it's what helps me to cope without you here.

Anyway, my love. We are just a week away from it becoming a new month. The amount of time since you have been here just continues to grow and become difficult to comprehend. The weight in my chest is heavier to hold. The hole in my heart is bigger. The love for you is still exponential. 

I hope you are having a great time wherever you are. Thank you for all of your recent visits. I don't doubt your presence. 

Until next time baby girl!

Love always, 

Ema 

   

Sonzee "turns" 8

Dear Sonzee, 

Today, 8 years ago you came quickly into our lives, but 3 years and 8 days ago you slowly left. Making it your 4th birthday we have had to celebrate without you here. It doesn't make sense to celebrate a day when the reason, you, is missing, yet here we are, again. The truth is, this year was the easiest. All of your many signs over the last few weeks have been a significant help with that.

A bit over a year ago a friend of mine realized her father shared the same yahrzeit as you, the 8 of Shvat. She came with us to say kaddish at your grave. While she was there she also noticed that you and her father also shared an English birthday. Aba says the chances of that are about 1 in 40,000. We know how well you understand rare.

On Thursday this week, this friend invited us for Shabbas lunch today. At the time neither of us was thinking about the date. On Thursday night, before leaving for hockey with Tzvi aba asked me if I wanted to celebrate your birthday with a cake. As usual, when aba asks me about plans to honor one of your dates I snapped. Why would I want to have a cake? We have never had a cake, why start this year? He gave reasons why, but I continued to be annoyed. The conversation ended.

Yesterday morning I received a text. It read that my friend's children and she were going to be making a cake for her father, would I like her to add your name to the cake because birthdays can be so hard. I paused. I had forgotten that you and her father shared your birthdays. I immediately smiled and said yes, that would be amazing. It's funny how that came together. I knew that it was meant to be after that text, after all, I am sure you were involved in this orchestration. 

8 years ago you came into this world and everything we ever knew about life and parenting went out the window. Usually, on a person's birthday, they make a wish, they get gifts, and they are celebrated. For 4 years your wishes were your secret only. For 4 years the gifts you got weren't anything you could have asked for. For 4 years you were celebrated the best way we knew how. For 4 years I wished that you would no longer suffer, that you would find peace, and that you would be able to be free. For 4 years you gave me the gift of your life. For 4 years you let us celebrate you with hugs, kisses, and love, the only way we knew how. For the last 4 years, you have made my wish come true. For the last 4 years, you have given me the gift of believing in faith, in signs, and a new beginning of trust in Hashem. For the last 4 years, you have given me the ability to continue to celebrate you.

Thank you for choosing us to be your parents, for allowing us the greatest opportunity of trusting us to help you complete your earthly mission, and for helping me to see that you are never really as far away as it some days feels. 

I hope your actual wishes can be spoken, be heard, and have come true, and I pray when the time is meant to be, that I am given the gift of seeing you live them, so we can celebrate together.

Happy 8th birthday baby girl!

Until next time.

Love always, 

Ema