Heaven couldn't wait for you...

Dear Sonzee, 

Hi baby girl!! How are you doing?? I am sure you know how everything has been going down here. But, to quickly summarize, Laeya is living her best life in Israel. Our Passover plans to join her literally got blown up, so we are staying in Phoenix. Twin girl is really just disappointed she won't get her new clothing and stuff she had wanted us to bring her (haha). She is doing amazing there seriously (as I am sure you are aware). Meena killed her gymnastics season. She ended up qualifying for states and regionals, so her and I will be heading to California after Passover. Tzvi finished off his season sadly not as a state champion; despite having the best record for his bracket, they just lost the wrong game. He has improved immensely this year with his game, and I am excited to see where he lands next year. Noam has been trying out baseball, school soccer, and has asked Aba to get him onto the ice, so we will see where he ends up with in the hockey department. 

The dreaded heavy panicky, weighted grief has settled its way into my chest. 6 years in, I am now a pro. It only took me a whopping 5 minutes to realize what it was. Passover starts Wednesday, another holiday without you being here, it gets me all the time. I would have hoped by now it wouldn't still feel so yucky, but I guess that is just how it will go. The positive is just that I know what the feelings are, and I know they will come. So, I also know I have to just put on the grief soundtrack, sit with it all, and write you a letter. We will put this in the category of "grief maturity". Huh, maybe I just coined something?! I would prefer something catchier, so I will work on that. Anyway, baby girl. I just wanted to send you a note to let you know that I miss you and love you a lot! I will leave you with the lyrics of a song that is playing on repeat in my mind and sums it all up. 

Until next time. 

Love always, 

Ema

Heaven Couldn't Wait For You

Song by

Isaac Mather 

I still replay the last goodbye

The memory's burned into my mind

I held your hand, you closed your eyes

When you took your last breath, so did I

They said time heals, but that's a lie

It hurts worse as each day goes by

And it keeps me up at night

Heaven couldn't wait for you

It's killing me to face the truth

And it all feels wrong, 'cause you're gone

And I don't know what the hell to do

I didn't wanna let you go

'Cause moving on hurts the most

Why did the good ones always

Go too soon?

Heaven couldn't wait for you

I see you up in the stars at night

Wondering what is Heaven like

I wish I could be right by your side (oh)

If God's up there then ask Him why

He didn't give us a little more time

I thought that you'd survive

But heaven couldn't wait for you

It's killing me to face the truth

And it all feels wrong, 'cause you're gone

And I don't know what the hell to do

I didn't wanna let you go

'Cause moving on hurts the most

Why did the good ones always

Go too soon?

Heaven couldn't wait for you (Heaven couldn't wait, Heaven couldn't wait)

Oh

Heaven couldn't wait for you (Heaven couldn't wait, Heaven couldn't wait)

Oh

I wasn't ready to lose you

The angels don't deserve you

I'd trade forever to hold you

But you left before I knew

Heaven couldn't wait for you

It's killing me to face the truth

And it all feels wrong 'cause you're gone

And I don't know what the hell to do

I didn't wanna let you go

'Cause moving on hurts the most

Why did the good ones always

Go too soon?

Heaven couldn't wait for you (Heaven couldn't wait, Heaven couldn't wait)

Oh

Heaven couldn't wait for you (Heaven couldn't wait, Heaven couldn't wait)

Oh

Coming to a head

Dear Sonzee, 

Hi baby girl! How are you? I am sitting on the porch facing the lake in VV, for another summer without you. I was (as usual) holding everything together. Keeping myself (physically and emotionally) occupied to prevent the whispers of grief that I have kept at bay in that locked space. While I know 2 things can exist, I can enjoy my summer and I can miss you; I can continue to live life without you, and I can also miss you so terribly I want to be with you. The 2 existing things are coming to a head. 

Last weekend (as you probably know because Gan Eden surely got more crowded) a flash flood went through a river in Texas, where a lot of summer camps were located. The impact was deadly with an entire bunk of 8/9 year old girls and their counselors swept away; some of their bodies still have yet to be located. While the news of the reality of that situation was spreading across the US, your sisters were participating in a camp marathon where they chose to run in honor of you. Again 2 truths existing together colliding in my heart and head. 

Any loss of a child sits heavy beyond belief in my core. I know what these parents are feeling, the panic, absence, anger, confusion, intense pain, all with the added challenge that those who have never experience their child's death are saying how they are heartbroken (and while that may be true, they have no idea). They get to wake up to their children. They have them still, here. They are heartbroken at the potential of their loss, but they are unable to truly grasp the new reality of these newly bereaved parents. The ones I will soon see popping up in the online bereaved mom/parent support groups. The ones who now know the pain of everything they have always been subconsciously afraid of experiencing. 

The black hole of grief has opened up and swallowed me. I dislike this hole, despite the fact that my therapist would tell me (and after 5 years I know) that 2 things can exist, I can sit in the hole, I can give the grief time to sit with me, AND I can climb out of the hole. (For the record, I prefer to stay out of the hole and not even entertain it, because as your brother Tzvi would say, "why would I want to think about it when it's too painful") After 5 years I have almost mastered the ability of skipping over the holes, or so I have thought. Because always, when I think I have, and it has been a decent amount of time since the last "oops I feel into the hole I was avoiding moment", I inevitably find myself back at the bottom of the Alice in Wonderland hole. I guess maybe I believe my therapist a bit more about 2 things being able to exist. I can sit here in this horrible pitch-black hole filled with your absence and excruciating pain, AND I know that I will be able to survive the depths of what I have fallen into. 

I just wish these 2 things didn't have to co-exist.

 

202 weeks and 1 day

Dear Sonzee, 

It has been 5 Mondays and 1 day since my last letter to you. It has been 202 weeks and 1 day since you were last on this earth. I feel like in the last 14 weeks so much of my coping with grief has changed maybe that is why there have been fewer letters? If I am honest, that isn't entirely true, it also has to do with me working full time and your siblings' extracurricular schedules. There remains not enough time in the day. I still wonder how I managed everyone and you. I mean I know it was in huge thanks to Nurse Paige. We never would have been able to do anything of what we did without her. I miss her a lot too.

Over the last 5 weeks and 1 day I have been immersed in work and activities which has allowed me to compartmentalize my grief. In a week we will be on our first actual family vacation that doesn't involve hockey or gymnastics, so I am hoping and planning to continue pushing off the wallowing and self-pity until our return. Then the next 6ish weeks will be left to being extra depressed over all the dates of yours to come. 

This year you planned a whopper of having your yahrtzeit fall on Laeya's 14th English birthday and my 40th Hebrew birthday. I give you a standing ovation for that talent. You always knew how to blend the positive and negative and merge happy and sad together. Well done little bear. In 13 days we will start another year without you. They have all been horrible, but this year to come will eventually turn the clock to your death being longer than your life. I am not ready for that. So I will sip my wine, swallow my tears, and smack back on my happy face until I am sort of ready to deal with that thought because I like avoidance far better.

In other news, Aba got a new car this week! He is very excited. I wanted it to be red for you, but we went with a pretty blue. I am going to get your name on the license plate, so this way you will have a place in the car. Maybe SONZBR or SNZBEAR? I have to think about it. Anyway little bear. I miss you so much. I still wish you would come and visit me. 202 weeks and 1 day is long enough already! Come see me in my dreams!

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. 

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

Dear Sonzee, 

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

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

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

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

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

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

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

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

Until next time baby girl!

Love always, 

Ema