Monday, October 25, 2021

90 weeks

Dear Sonzee,

This last week has been one of the more challenging ones over the last 90.  I would just like to take a moment to reflect on that number.  90 weeks.  It sends chills down my spine.  My brain cannot compute how time, really life, continues to move, and so quickly.  

This week was one of those weeks where despite how much my heart aches and how much I miss you, I realize you are with us and orchestrating so much of what continues to happen with us and for us.  I will be honest, knowing you are "with" us in a different manner than physical does little for compensation, but it does help to feel your support, or rather your guidance. 

On Tuesday we found ourselves finally settling for the damages of the flood.  It led to a conversation with aba Wednesday morning before I started to work that left me ugly crying in the office, only for a coworker to walk in to see me.  I am sure that was also planned by you as she was the absolute perfect person for the moment.  She encouraged me to cry and listened as I attempted to talk through the tears about how challenging I am finding the prospect of losing your swim spa.  I know I don't ever want to go back into our "Phoenix" house.  I can't live in a house that has nothing of your room, and I don't want to.  Your swim spa though is more of a challenge for me to accept not being able to take.  After I paused, with tears in her eyes she began to tell me about her son and how he died.  My heart instantly knew you sent her to me.  She went on to tell me you won't ever be able to leave my heart.  You won't ever be able to leave my memories.  In my heart and mind is where you will forever be, and the rest, well it is just stuff.  Hashem knew those words had to come from her.  Lord help the average Joe without having lost a child who would have ever said that to me, but coming from someone further into this journey, I trust her words.  I know she is right.  I know despite how much the tears instantly fill my eyes, and how my heart breaks, she is right.  It is all just stuff.  The pictures, the memories, all of it within my heart and mind...it still is fresh, it is real, it is you part of our life and world forever.  Let me tell you though, I am still going to cry over the loss of the stuff.

Thursday morning we found ourselves signing a lease for an apartment.  Who would have ever thought we would be living the apartment life?! But, here we are...It won't be so long, just for a few months.  You have orchestrated some amazing happenings that are hard to ignore and show us how things really do happen for a reason and for the best.  Sometimes I wonder if you sacrificed yourself for your siblings and for us to be able to leave our old life.  Maybe your death isn't where this all started, but 90 weeks later I know you are making sure we all start this journey by really moving forward.  I will emphasize it is by no means emotionally easy.  There is a mixed semi-panic feeling like I am free-falling as I think about life continuing without your big stuff.  There is a part of me that's so afraid that without your stuff the memories won't be enough.  Then there is a part of me that says it is time for us to start on a new journey with you guiding us, with me allowing you to guide us, with me trusting in the plan that I have no awareness of.  There is a part of me that is excited over all the positives that are coming our way, but there is a fear of me fully trusting only to have my feet pulled out from under me like it always was as we lived life with you.  I am afraid to get too comfortable, to trust a little too much, to put my guard fully down.  

Motzei Shabbas brought me to the realization that our life and new life can coexist.  It allowed me to realize those close to us understand the circumstances of our situation.  I realize everyone understands our need to move forward despite that it means change. 

Yesterday your brother had his 3rd league hockey game.  I don't want to ask where you were, but clearly, you had other plans because I can tell you weren't there.  I will give you the same lecture I give your other siblings and remind you that I don't care what other plans you have, you need to come and support your brother.  That 2-8 loss was brutal Sonzee Bear...the least you could have done was throw a goal your brother's way.  Well, as aba would say, the least you could do was nothing...which you did...so this weekend is a tournament in Scottsdale and I am going to tell you, that for all of his games I expect your attendance.  I know you are enjoying your freedom and all, but no excuses.

Anyway, little girl.

I miss you lots, hope you are doing well, and hope you visit me in my dreams soon.

Thank you for everything you have been bringing our way.

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, October 19, 2021

Different hope

I have had a love/hate relationship with the term hope since February 11, 2015.  There was always an internal tug between protecting myself and relinquishing the fear of actually allowing myself to be crushed by the fallout after hope failed.  After all, living a life where death is waiting on the doorstep is nearly impossible without giving in to some sort of hope. Hope that seizures will be few and far between. Hope that illnesses will come and go quickly and not leave behind any secondary long-term symptoms.  Hope of limited hospitalizations or at least quick ones and enough recovery time between the next one.  Hope that the decisions that are being made are the best ones not only for the moment but for whatever the foreseeable future looks like.  Hope that going to sleep will result in waking up.  Hope that the days are filled with more calmness than turmoil.  Hope for the best-case scenario. And dare I say, at some points even possibly hope for a cure.

There came a time eventually when hope became dismal.  When the real hope of life ever becoming normal, different, or potentially something other than what it was really meant to be was no longer in view.  When I realized that what I hope for can't be anything long-term because days became obviously numbered and all there was, was a new perspective on hope.  Hope has always been an abstract concept, but it now turned into something ungraspable because I won't ever learn if my hope is being achieved.  I can't ever receive confirmation because instead of hoping for my child to be "cured", or for her life to be significantly easier, or for her to be seizure-free, or for her to speak her first word, or for her to do any of the many things that her body was deprived of due to a lack of a functioning CDKL5 gene, I am now simply hoping she is resting in peace.  

There is no more hope for a cure when you start to live life after CDKL5.  There is sadness for all the CDKL5 siblings left behind as they continue to suffer.  There is extreme empathy for those families receiving a new diagnosis, but there is less of a care or emphasis for any sort of cure for something that doesn't matter because it cannot and will not bring my child back.  Maybe that is selfish.  Maybe it is just a moment in my grief journey.  Maybe it is just the cold hard truth.  I am no longer able to hope and dream of any positive potential for Sonzee.  There are no more hopes for walking together and hearing about her day or what her dreams are.  All I am left to do is hope to dream of my dead child, continue hoping she is safe, and hope that after I die I really will be reunited with her.    


The Mighty Contributor

Monday, October 18, 2021

89 weeks

Dear Sonzee,

Today will mark 89 complete weeks without you here. This time 89 weeks ago you were being held in my arms…in a few more hours it would be the last time I got to feel your weight, hold you, kiss you, and tell you in person “I love you.” I wonder if you even heard me?

This last week went by so quickly and as I sit here trying to recall everything that happened I always wish I had started to write this during the week so I wouldn’t forget what I wanted to tell you.  

The big highlights of this passed week were really that Tzvi had his first league game.  It was the 2nd time I’ve sat in that rink on the north side for a game since you weren’t with me.  Since you didn’t require us asking for the key to use the wheelchair elevator so you could sit in the stands.  It was the first time that nurse Paige sat and watched a game without keeping an eye on you.  It was amazing for her to be there with us, embracing the tram spirit with her purple and black, getting to see your brothers first official goal of the season, but it wasn’t the same without you.  You weren’t kicking off your boots, she wasn’t swiping your VNS magnet, she wasn’t trying to adjust a soft purple blanket fighting with you to not kick it off.  She just sat next to me and we talked like our only focus was on the hockey game. 
It brings me so much comfort that she’s still in our lives, but I know it’s not just me who misses all those things I just listed.

On a similar note to your absence, after you died I made it my mission to make dinner for Corrinne’s  family every time she was admitted to PCH.  It was just all I could do to sort of remain in the old world and knowing how nice it is to eat a home cooked meal and not pay $182736 for Starbucks coffee became my mission to ensure if I knew, her family got coffee and dinner.  Then, she went to be wherever you are and life without you girls changed us all drastically and even random coffee drops couldn’t occur because there was no way to know who would be home, so dinner making essentially stopped. Until last night, when your CDKL5 sister Charlotte was back in the hospital.  I had tried to make dinner the first time, but it didn’t happen. Yesterday I just told her mom it would be coming, and I made dinner, coffees, and might have even thrown in a couple of beverages that the hospital doesn’t sell.  That hospital life sucks! The least I can do is bring food and coffee knowing what I know about that life and the suckiness it brings. 

My heart misses you terribly and while I would never wish to enter those rooms on the 8th floor ever again, sometimes my heart wishes you were here to have that option. My barista level of coffee making is 100% attributed to you!  

Anyway baby girl!  I love and miss you! I hope you are staying safe and having a blast with all of your friends! Thanks for showing your brother some love yesterday and helping him with his first goal.  Thanks for bringing Nurse Paige and so many others into my life.  

Until next time.

Love always,
Ema

Monday, October 11, 2021

88 weeks

Dear Sonzee, 

Another week has come and gone, marking 88 weeks since you left.  This last week was my fall break and despite being off of work for a week I still feel like I didn't get all I wanted to be accomplished.  I did finally manage to get over to auntie a's new place and organize Mo and Ziva's playroom, bedroom, and kitchen.  I still need to tackle her closet, but you know how Auntie A is, she has to be coaxed into allowing me to do my thing...eventually she always comes around.

Corrinne's mommy and I finally got our nails done.  It has been since summer since we have gone so that was nice we were able to catch up and to do some self-care.  I am trying to be better in general in that department.

Bear Pines has been doing really well. We have been pleasantly surprised at how full we have been.  We initially thought with it being off-season we would hardly have guests, but it is quite the opposite.  Someone wrote on the comment card they were sorry for your death.  It makes me smile that people actually read the wind chime that has your birth and death dates and or the information we put in the binder about you.

Yesterday was the first relaxed Sunday we have had in a while. It was nice to not have anywhere to really be besides Tzvi going to hockey.  Starting next week begins the craziness of games.  I can't wait to go and watch him, but also, nurse Paige is going to come and watch since we will be in her neck of the woods.  I cannot wait to start seeing her on a more consistent basis, or at least whenever she will be able to join us.  I have gotten used to her not coming in the house at 7am and not being there when I get home.  It helps we aren't at our house.

We had grief group Thursday night and the last photographer to take pictures of us as a complete family was taking pictures for hospice of the valley.  I mentioned how he took our pictures and we chatted about it for a bit.  I haven't fully looked at those images, but I have taken a quick peek now and then.  I wish we had dressed up, although at the time I wanted it to be real.  

Anyway baby girl.  

I miss you! Hope you are doing well!

Until next time.

Love always, 
Ema

The Mighty Contributor

Monday, October 4, 2021

87 weeks

Dear Sonzee, 

 Today closed out 87 weeks of your absence. This last week we finished the last days of Sukkot and your siblings finished their fall break. Ema's started today (wahoo!), but more on that next week. We spent our first full holiday at a different shul in a different community. To say we have been having a wonderful time here would be an understatement.  It brings me such joy to have your siblings' friends walk over to either play at the house or pick up the one they came for. To add to that, ema is also thoroughly enjoying being within walking distance of her closest friends. It has been most challenging for aba, but he is not the biggest fan of any type of change.

 We celebrated our first Simchas Torah without you. That was a bit tough, at least for aba and me. Some of your siblings reflected on your absence. I remember when aba was afraid to take you to the party the first time. He said you would not like it. I asked him how he could know if he did not try, and he humored me and took you with your siblings. The main difference between anyone humoring me when it came to you, was that it always resulted in my being right. (I will give myself that shameless brag). It makes me smile ear to ear to think about you in your wheelchair with your father pushing you around during hakafot dancing with everyone. There was even a year a friend of Meena's broke your wheelchair sitting on it with you. Small price to pay for us to make sure you were not slighted any experiences. You LOVED this holiday. You LOVED to be out there with everyone. You LOVED the attention. Last year, because of corona aba and I were relieved to not have to experience our first Simchas Torah without you because it did not happen in the same way it had while you were alive. This year...for me, I was able to avoid the first night because only aba went back to our usual stomping grounds. It was not easy for him. For me, the change made the blow softer. I teared up myself on the second night watching when aba put Meena and Noam on his shoulders, and when I watched him walk around empty-handed, no wheelchair within his grip.

 Being in this new environment has led us to new experiences.  I am sure that was your intention in whatever hand you played in flooding out the only home you ever knew. It is an amazing opportunity for us to give your siblings, for them to be near their school friends, and within walking distance of their school. It is a step in moving forward for sure, but there are times when I feel like I am a heavy weight stuck mid-step. Like when people who do not know us because even though we have lived in Phoenix for 13 years, we have not lived here, where we are, for 13 years, and I have to answer basic "how many children do you have?" questions.  There are conversations that occur in passing about our 13 years here in Phoenix, I will admit with an apology, I sometimes leave you out of the story. There have been times where I have met some amazing new to me people and I talk about you non-stop and let them know about "Sonya's Story" and how my blogging began because of you. I am still finding my way through this mirky grief water that is for certain, and another week under my belt has not changed that.

 Anyway, baby girl. I miss you, love you, and hope you are having fun, playing hard, and staying safe.

 Until next time.

 Love always, 

Ema

The Mighty Contributor

Sunday, October 3, 2021

1 year 8 months




Dear Sonzee,

Today, in 18 minutes it will have been one year and 8 months, an entire 20 months without you.  How ironic that 18 represents life and I am writing this letter to you, and as each minute passes by your life only gets further from me.  Today, for the first time in exactly 2 months I am sitting at your grave.  I am sorry it took this long for me to be able to muster the ability to get in the car and drive to “see you”, to see your stone, to be able to see your name clearly etched staring back at me while I sit on your “hooray for Sonzee” bench. 

I painted you some rocks today baby girl.  I also got to see some new ones I haven’t seen from others who visit you.  My heart hurts looking at the rocks that have begun to fade and the ones with wording scratched off. There’s a part of me that wants to fix them, and there’s a part of me that says I shouldn’t. They represent the time that continues to pass, the weather that presents itself, the life that is continuing to go on without you here.  But it really breaks my heart. 

Thank you for the wind.  It made me smile through the tears I allowed myself to shed in front of you, the ones that I have tried to not have, the ones that make this all so real. 

This month has had its fair share of ups and downs when it comes to my grief.  I still haven’t figured out how to live with it as much as I thought I might at this point.  I still sometimes pause and remind myself you really did exist.  There are times when I am asked how many kids I have and with an unnoticeable twitch I say 5 and then if they ask if they are all at the same school I say yes.  It isn’t a lie, it just doesn’t hold the entire truth. 

This month I realized even more so that people just don’t understand that because you aren’t here physically doesn’t mean your siblings don’t need support anymore.  There are organizations that popped in during your life and then left us high and dry after you left.  It’s a shame that’s how they work.  Maybe it is an oversight, maybe they don’t really understand that during your life your siblings didn’t need the extra attention as much as they definitely need it now? Maybe they feel because you were the reason they were introduced to our family and you aren’t here that they don’t need to continue with us.  Whatever the reason, they should understand that grieving siblings shouldn’t be an afterthought.  It makes me angry, but it’s not worth my energy and we also do not need their assistance…but dropping us is wrong and just weighs on my grief.  After all, at one point you made our family “high priority” so it’s a slap that you are gone and that makes us not even a thought.

I don’t know what to say that in 4 months it will mark 2 years without you.  It’s hard to write, it’s hard to read, it’s hard to understand.  

Anyway baby girl.  Another month without you means that it is another month that you are perfectly whole and amazing. It’s another month you weren’t confined to your locked body.  It’s another month that you were able to truly be free and be YOU.  Another month means that you are able to do everything you couldn’t here.  Those are the thoughts that bring me a sliver of peace. They are what help ease the heartache.  They aren’t a complete fix, but they provide a cushion for the blows.

Please stay safe and healthy. Please continue with your signs and when you feel it’s right, please come and see me!

I love you baby girl!

Until next time.

Love always, 
Ema