Sonzee "turns" 9

Dear Sonzee, 

The first sentence that comes into my mind is, I can't believe today (would've, could've, should've) been your 9th birthday. That is how most of my current thoughts start when it comes to you because really, I can't believe how much time has passed since you were born and since you have died. This was the 5th birthday we celebrated without you here. The last age you were was 4. I have so many unanswered questions about who you even are. It is difficult to honor someone when you don't know them, and it is even doubly hard when they were someone you once knew better than yourself. I still have to ask myself, how is this even real?

Today I woke up and started my day looking at February 11 in 2015, 2016, 2017, 2018, and 2019. I skipped 2019, 2020, 2021, 2022, and 2023. I came across a not-at-the-forefront-of-my-mind gem that was aba feeding you frosting from 2 cupcakes for you to indicate your preference. That 2nd birthday of yours was miserable. You cried in 100% of the pictures taken, and babysitter Paige did a family shoot for us with our cute matching outfits. You really could have cared less, and that you did. You clearly were bothered by the seizures and pain. 

It is funny, how aba reminded me how much I hated your birthdays during your life. I can promise, I hate them even more now in your death. There was just something so painful about reliving your birth and those first few weeks afterward every year while watching you suffer and miss every age-appropriate milestone. And now, well now you miss everything. I, however, do not miss watching you suffer, but I do miss not knowing the little girl you would be. Let's be honest though, it was a challenge to know who you were when you were alive too. It's not ideal either way.

Noam, Tzviki, aba, and I went to your grave and gave you your birthday rocks. Your sisters didn't want to come. I was torn in my mind over whether I should force them to or not. On the one hand, if they don't want to go maybe it's because it makes them sad, or maybe their grief is indicating they want to honor you a different way. On the other hand, what if it is just them wanting to put something else above you, and then I feel that isn't fair. I am all for variations in grieving, but it hurts my heart too much to have them just pretend today isn't a family day or that it isn't an important day. After visiting you we felt we should go to Starbucks and I bought myself a pretty tumbler as "your gift". Then we drove all around Scottsdale picking up your siblings from their previous night's sleepovers.

We were supposed to go watch a show, but it was canceled last minute, so I spent the afternoon getting addresses together for Tzvi's bar mitzvah save the date invitation that have to go out (once they come, after I fix the incorrect date (and aba thinks I have it all together, HA!)) We then went to bubbies and pop-pop made pizza's and bubbie made pasta and a wonderful red birthday cake for you with the perfect bear center! I couldn't have asked for a better way to celebrate your birthday, well except if you were here. 

Anyway baby girl. I hope wherever you are everyone made you feel special and that you had a spectacular day. I have no idea what I will have to plan to honor you turning double digits, so it's a good thing I have 365 days to figure that out. 

I love you and miss you beyond words!

Until next time. 

Love always,

Ema

4 years 11 months and 23 days

Dear Sonzee, 

Today is the day...just one of the days I have dreaded since the day you died 2 years 9 months and 17 days ago. Tomorrow is another day I will dread and next Monday is one that I just cannot even begin to truly process. Today, your baby brother turns the age you were on the day you died. He called you "Dondee" because he couldn't even say his "s" when you were alive.  It took him the last 2 years to start to understand that death meant you wouldn't be coming home, but he still doesn't really grasp where exactly you are. (I don't think any of us really do to be honest-the concept is just too abstract).

I spent so many days crying in anticipation of today and the week to come that today, despite my heart beating a little faster, and feeling that extra drag in my step, there are no tears...yet. Maybe it is because I am pretty preoccupied in NY with your baby cousin Isla. In a few hours we fly back to Phoenix. 

Today, as Noam turns your same age, he will be starting his debut hockey career. You were in the middle of life and death during the same age equivalent time. It is a celebration of sorts that he is reaching today, as is every day we all continue to live and breathe, but birthday and age celebrations aren't what they once were to me.  There is a shadow that is always cast. There is a piece of my heart that can't join in with the rest.  Most people cannot understand.  Most people focus on how I am supposed to be dealing with it because it wouldn't be fair to Noam if I didn't. People don't understand the challenge of celebrating a younger child out aging their older one, and lucky for them they don't have to, so it is easy for them to say what I should be able to do. 

After today he isn't technically younger than you. He will (thankfully, and I hope) have age experiences you weren't afforded. I am grateful for that. I know what it is like to be stuck in the alternate universe of not aging, so I will celebrate the essential victory of what is tomorrow, but it doesn't come without the knowledge of you now becoming our youngest. Forever our 4th child who will become younger than our 5th. Forever 4. Forever 4 years 11 months and 23 days. Forever and never to be the big sister you should have been. While I won't let that take away from Noam's ability to continue (and I pray he does) to outage you every day for the rest of his life, I will also not ever forget that that fact is one and the same, and neither should others. 

Until next time baby girl! I love and miss you!! Hope to see you in the sky!

Love always, 

Ema

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.    

Life goes on?

It’s been 2 days past the 4 months mark since she’s been gone.  Her large red ppod has remained on its frame in our master bedroom.  The toy bar and tray table have been collecting dust resting under our bed.  Earlier this week Sam decided that he wanted someone specifically to have her chair.  We originally were going to donate it to her school for multiple children to use during the day, but he decided that wasn’t doing the chair justice, or maybe her memory? I am unsure exactly, but I know for me as long as someone has her chair, I am okay with that.  I knew whom to reach out to about the chair and in a little bit today she will be on her way over to the house.  I took a final picture of it in our room just in the case it’s gone by the time I come home from visiting Sonzee, which is where I am currently at.

This morning her big siblings had their end of the year school count down and official start of summer ceremony on zoom.  I don’t know why it took the ceremony for me to process that this coming year is our oldest’s last year of elementary school.  Her brother follows behind her entering into 4th and then our 3rd is entering into 2nd.  Sonzee would have entered into Kindergarten and in two different lives I have a good idea of who her teachers would have been and it makes me cry.  It all makes me cry.  Life makes me cry.  I can’t seem to not cry. The days are turning into months which turn into years and they are going to continue to move quickly, without her here, without her moving past the 2nd week of her 2nd semester of her last year of preschool.  Gosh this is hard.  Her brother in 3 more years will be beyond where she ever got to be, and that’s not really even true because where he is at currently developmentally is far beyond where she ever was.  Sometimes I don’t know what I mourn more.

I sit here now, (by her? With her? Near hear?), glancing at a pile of various rocks, some that indicate events and milestones that are just representations of the life she is missing.  Everything she misses now becomes a rock placed by her to acknowledge what she should be doing or have done. I wish so much that things were different despite knowing what that would even mean for her or for our family. I can’t imagine a worse fate than where we currently are, so I think it’s a safe wish? But would that have meant never having her? I can’t really imagine that, but sometimes it feels like it was all just a quick dream.  Pictures represent life before she was here and pictures now represent life without her and in the middle was a life that was full of struggles and what felt like days and moments that would never end...but they eventually did and now all we have are the memories and this insane love that makes a wish for anything different seem almost wrong?

Goodbye May

I am not quite sure why saying "goodbye" to May has me dealing with all sorts of emotions.  I wish I could pinpoint the exact reason why moving into June, just another new month without her, has me dealing with so many tears.  I wonder if it is because our fate for summer is still up in the air and normally our plans by now have been solidified for months.  I wonder if it is because deep down I have a sneaking suspicion that this summer is going to be the on the opposite end of anything I could have anticipated at the closure of last years.

I keep waiting for the day this all becomes easier to manage, where the decisions of life don't feel like they weigh 1000 or more pounds.  I keep waiting for the waves that are crashing around me to not come up quite as high.  Supposedly that eventually happens.  I guess it is still too soon for that.  I keep waiting for the pain to lessen, for the hole in my heart to fill up with something that maybe, just slightly, makes it feel a little more whole. I wonder if that will ever really happen.

In a few more hours the month of May will be another 31 days marked as complete for the year of 2020, and another 31 days that were spent without me being an active special needs mom.  It was just another 31 days that Sonzee never got to participate in here on earth, and another month she didn't get to make any memories with her siblings.  May was just another 31 days that were spent celebrating various unmet milestones, some that were known and others that we don't even know what was actually missed.  I wish it was as simple as wishing good riddance to something unwanted, but for some reason saying goodbye to May feels like saying goodbye to Sonzee all over again.

Crumbs

When my oldest was 16 months old I enrolled her in a gymnastics class in north Phoenix.  At the time I was 8ish months pregnant with her brother.  We began going on dates after her gymnastics class to a local coffee shop.  She got her cookie and chocolate milk and I, of course, some form of coffee.  When her brother was born he tagged along, first in a carrier, and soon as a member of our special time.  Eventually, my older two began preschool and my dates became with our 3rd and Sonzee in tow in the carrier or stroller.  3 years ago when our middle daughter began school, the dates stopped.  Sonzee wasn’t enrolled in gymnastics and while I could have taken her to a coffee place and drank coffee with her in her stroller, it just wouldn’t have been the same.

When our youngest became enrolled in gymnastics this past fall I was looking forward to having our dates.  It had been a while since I had a date with a toddler and I was so ready to start them back up.  Fast forward to this morning.  We have about an hour and 10 minutes between the end of gymnastics and getting sonzee from school, and boss baby is finally at the perfect age to have his attention focus on a cookie and chocolate milk for more than 5 minutes in a chair, so off we went on our date.  I snapped pictures, he picked out his chair, I was so excited to be sitting there with him, and he appeared to feel the same excitement.  Then I saw the crumbs.  Little tiny toddler crumbs on the table, on the chair, on the floor, just staring at me so I grabbed a napkin to wipe them up and then this emotional tidal wave washed over me.  Crumbs...the same ones I used to apologize for when we went to this same coffee location with my older kiddos and they were all over the place.  The same crumbs the employees used to smile off at me and say “don’t worry about it”, while they grabbed a broom and swept them up.  The crumbs that toddlers make but ones that Sonzee has never gotten to make.  Cue to the tears.

Now with glossy tear-filled eyes, staring at my son trying to not let the tears fall as I was wiping up crumbs in a coffee shop while trying to get over the emotions quick enough to enjoy the moment of actually being on a date.  So many more of these moments keep happening.  It's always dual-edged, the same thing I am not taking for granted fills me with dread because Sonzee couldn't or cannot do it.  The pain of it continues to get worse for some reason the older she gets.  Sure she can unhook her feeding tube and her stomach drainage and make a wet mess, but the reality is, she cannot and won't ever be able to make any crumbs.