Sonzee "turns" 11

Dear Sonzee, 

Firstly, happy 11th birthday baby girl wherever you are. I hope you are able to celebrate and maybe even have a party with all of your friends. Today is actually or rather would be your golden birthday. Fitting your siblings haven't had theirs, so you mark the first one. Tzvi says it is stupid and even when it is his, he won't care. (Too bad I will make it the most ridiculous day for him, and since he will be in his 20's it will be even better!!!) I still cannot understand how this is the 6th birthday you have celebrated without us, without us being able to decorate your bedroom door and spoil you with I don't even know what. This year I got a new sign for the front yard, a new sign for your grave, and a fake birthday cake that is red and white for you. (We'll see how long Mr. Ira lets these stay this year).

As in 2024, Aba reminded me again how much I hated your birthday during your life; not sure if it is more or less than my feelings now. I decided today might be worse than your deathaversary. There is just something about honoring a day created specifically for a person who isn't here to be honored. The day isn't supposed to be about me, or anyone else, it is supposed to be about you. Where are you even??? What are you doing? What do you look like? What do you like? What would you like if you were here? I keep waiting for these days to not dig deep into my soul as much. Guess what?! 6 years and 6 birthdays isn't the magic number. Harper's mommy is at 10 years and 9 birthdays and she isn't giving me much hope. But we did decide when you and Harper's siblings are out of the houses all grown up and moving forward with their lives, we will just drive to each other to eat cheesecake and drink wine together, so there's that future to look forward to!

Today I packed my day with lots of work. I have learned keeping busy is the best thing for me or else it won't be good. It will finish off with Zoyo for Meena since it's PJ Day, and maybe they will finally have new flavors. I hope you are being spoiled and doing whatever it is you want to have the best day. I miss you beyond words. Since I can't find the right words to finish this letter with. I will leave you with lyrics to a song.

I know you're up in heaven

But damn it hurts like hell

'Cause I'd just be pretending

If I said anything else

And I know God don't make mistakes

But this sure feels like one

That won't change the facts

That won't bring you back

So I'll cry 'cause it's over

And smile because we had you

Packed a whole lot of living

Even though it ended all too soon

And in time, I'll start healing

But even when I get that feeling

No matter where I go or what I do

I'll never not remember you

Thank God for all the memories

And pictures on my phone

They don't fill the empty

But I feel less alone

And I know you're with the angels

Right where you belong

'Cause you were one to us

You left a legacy of love

Love you and miss you!

Until next time. 

HAPPY 11TH BIRTHDAY.

Love always, 

Ema

6 years

Dear Sonzee, 

Today marks 6 years since I last held you. Since I last gave you kisses. Since I last snuggled you. Since I last wrapped you in a blanket. Since I last carried you through the hallways in our old house. Since I last saw your siblings give you a kiss or a hug. I would say I can't imagine how time has gone by. But similar to when people say they can't imagine anything related to a medically complex kid and them dying, I will correct myself immediately and say, I can imagine, I just don't want to. I don't want to process that life has continued on for the last 6 years without you. It has to be impossible that 313 Monday's have gone by without you being here, but the reality is real and it is beyond cruel.

I have found myself confused when I see girls your age and realize had you not had a mutation on your CDKL5 gene, you would be in 5th grade, a year away from your Bat-Mitzvah. It's a challenging concept to wrap my head around. Momentarily I find myself back in the land of what if. Forget, what if you had never died. What if you had been born with all of your genes functioning properly? What would that life had looked like? Maybe one day I will get to see a peak into that life and realize the one we did get to live with you was actually the better one? I can only hope at least. 

This year I am on the verge of being numb to the redundancy of my feelings and allowing myself to sit in the depths of the sadness. It doesn't help that your twin girl is living her best life 7500 miles away from home. On one hand, ever since you died the absence that is created when your siblings go away doesn't even light a candle to the absence that your actual loss brings. On the other hand, the house is missing the arguments between all of your siblings, her daily routine, her bedroom light being left on (well actually, Tzvi went in to use the bathroom the other day and left that on, so maybe it does get some use), her presence, her friends coming and going, her constant requests to be driven here and there or to go out shopping. We went from being a group of 7, to 6, now to 5. Although I pray it won't remain that way, but life has shown me that anything can happen and I am not naive to think it can't. 

Over the last 6 years I have learned a lot about myself. Most recently I learned I love walking around carrying live chickens and I love taking care of foster kittens. The reality is that I am just trying to fill the monstrous void you left. It's the void of you yourself paired with the confusion of what on earth can actually make me even momentarily happy since you left. There is a significant void that nothing can fill, but it's definitely not for a lack of trying. 

So many times during the last 6 years I have found myself thankful for you not being here. I mean I am thankful for you first and foremost. No more seizures. No more failed GI system. No more broken bones. No more pain. No more being stuck inside your body. I am thankful in general. Not that I doubted it, but there is still no cure for CDKL5, so I am thankful we weren't sitting here filled with false hope waiting. I remember the first year after you died, I was torn between utter fear there would be a cure and doubt there ever will be one. 6 years later, I just sit here feeling broken for every family that will eventually live this side of the journey, but also relieved that the fear of when for you/us has come and gone. Now, it just is life. No wondering when. No wondering what life will look like. Not wondering what the future would look like for you in a world where aba and I had died first. Not wondering how extra difficult your siblings' lives could have been, or what they might have missed out on, or what I as their parent would have missed. I am thankful that as your mother I am now the one who has to suffer from your absence. If I am honest though, I think your suffering was far greater. For me it is just a permanent pain that despite my feelings 6 years ago, I have actually managed to learn to live with. It is ever present, constant, nagging, and never ending, but so are my thoughts about you. 

I hope you know how much you are truly missed. Sometimes I wonder. Sometimes I read the letters "from you" that your twin girl has written me on mothers' days or my birthdays throughout the years and pray they are somehow your words being written through her. I truly hope you really do visit even though I don't see you. I hope you really are at peace wherever you may be. I hope you know how much I wish I could twirl your hair and give you one last kiss. I hope one day I get to give you another cuddle, but until then I hope you have someone to give you hugs for me. I hope you are settled wherever you are. I hope the last 6 years have treated you better than your earthly life was able to. 

I love you little bear. I miss you.

Until next time.

Love always, 

Ema

Sometimes I wish the world could know just who you are to me
But some days I feel selfish like you're a secret I should keep....

....I wish to you the greatest things and all your greatest dreams

Even if that means they take you far away from me