Monday, February 22, 2021

55 weeks

Dear Sonzee, 

Here we meet again. Another week, another Monday without you here. I will admit that although nothing has changed as far as you being gone over the past month, it has been a bit of a relief to not have any significant days surrounding you this last week.  I feel as if I can go back to breathing.  It certainly isn't the way it once was, but it is certainly much improved from the way it had been with all of your anniversary and birthday dates.  I am starting to slowly emerge from the really deep pit onto a little ledge in the pit.  It isn't much of an improvement, but it feels significant for my ability to function so there is that.

Today marks the final Monday of 2021. It also marks another round of 19 days of February you haven't been part of for 2 years.  There is just so much you have missed and are missing here, and meanwhile, I am missing watching all of your firsts. This whole arrangement honestly sucks.  I have been trying to read inspirational religious books to somehow attempt to make sense or cushion the whole concept that there is some significant reason this all had to occur that I am just not privy to yet.  It isn't exactly working.  Maybe it is my fault that my belief isn't where it should be or needs to be because I can't be okay with that, but at the same time, it isn't for a lack of trying.  I just can't blindly accept that as a satisfactory answer.  Maybe one day?  Maybe the same day I get to see you again and all the blanks are filled in?

This week at swim it was the first time Noam was so excited to go in the pool.  He kept asking if it was his turn the entire time Meena and Tzvi were swimming. On that note, yes, Tzvi is back to swimming.  Everyone else was swimming on the same night and with no hockey at that time I said, "in you go".  Meena and Tzvi are actually in the same class, they seem to enjoy swimming together.  Well, I think he is enjoying nagging Meena the entire time, but regardless, for me, it is 1 less hour I have to hear it.

I am unsure if you noticed, but I set up a couple of new baskets for you so the rocks aren't all over the place.  I can't completely figure out how exactly I want it, so I feel like it will be this ever-changing process, but the baskets make it feel less cluttery.  There was apparently an issue with your bench that required it to be sent back to the monument company, but Mr. Ira assured me it should be back and fixed by the end of this week.  I am really interested in knowing what exactly the issue was, but I am not sure he will give me that information. I am sure it is to prevent me from getting upset, and he is fixing whatever it is, so I am just eager to see it (but I really hope it isn't an issue with being able to hold me up while I sit...please don't laugh too hard if it is and I cause it to break in half).  Your yahrtzeit block is finally up and the correct red-colored candle holder is now in place.  I verified it Thursday since the first time it was blue.

Anyway my little bear.  I miss you a lot, as Noam would say when I ask him how much I love him, "too much". To which I will reply the same, "it can't ever be too much".  Be safe, and have fun.  Come and visit me!

Until next week.

Love always, 
Ema

The Mighty Contributor

Monday, February 15, 2021

54 weeks

Dear Sonzee, 

The weeks are flying by in a manner that feels quicker than record time, I feel like there are just seconds now between my letters to you.  This week we remembered your birthday. I am still at a loss for the best word to describe what February 11 has now become.  We didn't celebrate it, we didn't honor it, we just thought about you and what the day once was, so remembered seems to be the most fitting word.  

Meena went away for her birthday weekend with bubbie and poppop finally.  They went to Great Wolf Lodge and had a great time.  I am glad she wasn't phased that the last time we all were there, so were you.  I wonder if she really even thought about that.  I am torn on if that hurts me or not.  On the one hand, I am so thankful your siblings can move forward, on the other, I hate that they are.  I know to suggest they are isn't exactly the fairest statement to make, because I know you are always with them, but still, it seems so much easier for them.  (As it really should be, but yet it sucks).

Aba has given me the freedom to reorganize the kitchen, so it took me until today to realize the labels on the bottom right shelf of the fridge both still say "Sonzee TPN/Lipids" and "Sonzee Medications/Nurse Paige".  My heart hurt when I read the words and realized why nothing has found its permanent home on that shelf in over a year.  I am fairly certain, like all of your containers being used in Bear Pines, the wording won't ever be erased. (I chuckle when I think what someone will say when/if they flip the instant coffee holder around to see it say "alcohol wipes", or when they read the container drawers that have your TPN storage information written on the front but not the actual contents of what is now being held.) Grief is just weird like that.  I think I would cry for hours if the labels were ever removed, it's bad enough you are already gone.

On that note, I feel like I am starting to truly understand the feelings those in the grief group stated a year ago about feeling like their child would be forgotten.  I didn't understand what they meant.  I remember during one of the meetings I said I didn't have a fear of that happening, but it's funny how 54 weeks can grant you a different perspective.  You won't ever be forgotten, that is impossible, but the brain sometimes works in quirky ways, as does the world.  Your physical presence is gone, so much of you has left our house, it is us who keeps your essence here, but we go out as a family of 6, and you aren't there.  Your seat is absent from the car.  All these physical reminders, gone, and so sometimes I want to wear a shirt that says "There should be another", "Family of 7", "Mom of 3 girls and 2 boys".  I want to make an announcement that you were here so everyone who doesn't know will know, and so I don't have those moments where I get smacked in the face regarding your absence.  

Tzvi had a hockey tournament this weekend. PS: Thanks for helping him score that goal! I know it was you, and I am sure if anyone realized I was crying in a hockey rink over my kid scoring a goal they would have said "umm, alrighty then".  It's in those moments specifically I want everyone to know that I am an emotional mess because I buried you.  Similar to the moment some little (I will leave out the adjective I want to use) kid slammed his body into your brother and sent him flying into the boards and I jumped up and screamed HEY so loudly every single person in the rink looked at me.  It's as if I wait for these games to let bereaved momma bear out...I am torn on whether it's a continued blessing or a failed mission I haven't been thrown out yet by the refs. I behaved, I waited until the other team's parents walked out of the rink to give me time to calm myself because I was legitimately about to go off on them.  I guess year two is starting out with that whole anger stage of grief.

Anyway, my love, it is getting close to midnight.  I miss you so incredibly much it sucks! I hope you are having a great time wherever you are.  We all miss and love you!

Until next week.

Love always, 
Ema


The Mighty Contributor

Thursday, February 11, 2021

Sonzee "turns" 6


Dear Sonzee Bear, 

Another birthday we didn't get to celebrate together, it seems wrong to have a day on the calendar in honor of the birth of you when you are no longer here.  Aba made a statement about how he didn't want to celebrate today because a birthday is the celebration of life, and now there is nothing to celebrate.  Valid (horrifically painful) point.  Man, this sucks.  I wish I could say this year was easier than last year, but it isn't, it is far worse.  I hope it was the exact opposite for you.

I wore my usual birthday outfit in honor of you despite the circumstances.  Had I actually ventured out into public and had a conversation about the balloon leggings, I am sure it would have been fantastic to mention I was wearing them in honor of my dead daughter. I spent this morning with Corrinne's mommy.  We spent the time literally sitting on you, drinking our Starbucks in some beautiful Phoenix weather.  It was the perfect way to spend your day.  I can imagine you had an extravagant party considering so many of your friends are with you for this one.  I hope they made you feel beyond special.  I hope you ate cake and ice cream and ran around in a beautiful wonderland with your curly pigtails and no doubt, a cute outfit.  You have probably another year until you would be too old to wear the pigtails without rolling your eyes at me.

Besides decorating your grave, I am sorry we didn't do anything to celebrate you.  No one here even mentioned cake or cupcakes in your honor.  I mean, to be honest, besides that horrible keto cupcake I made for your first birthday, you never had more than a lick or bite of food anyway, so what would have been the point?! Meena made a sign for you and hung it on the front window.  Today she finally got her "Sonzee and I" book.  Now all of your siblings have a book of you and them individually.  

I spent some time today, as much as I could before it was just simply way too difficult, looking at your birthday pictures.  I realized that for 4 years we were distracted with the reality of what today really was.  You were here, so the focus became on celebrating you, and now you are not, so the focus went back to the day we first met. You were able to meet your siblings one by one, and I have some of the sweetest pictures of them standing on stools to be able to touch you, but it wasn't the first meeting I had envisioned.  There was a picture of the lab results the NICU team wrote on paper, at the time I didn't understand any of it, but it makes me chuckle now that I can talk medical slang like it's my job.  It was such an emotionally draining day, but it turned out to be the most accurate foreshadowing of your life.  Me with you in a hospital, scared and unsure of what was going on and going to come for a lengthy period of time, and aba at home with your siblings.  

Oh, my little girl, I wish there was some compromise I could make with g-d to be able to peak through a window into your world.  I trust you are beyond amazing.  I trust you are free and your soul has elevated to the highest place possible, and maybe even beyond because of your incredibleness. But I am just so lost without knowing the specifics.  You can go ahead and laugh at how my gut isn't enough for me anymore and I need the proof.  

I wish you another incredible year full of comfort and peace, and I selfishly wish that you would find a way to help me find just a little of that for myself without you being here.

Happiest of what would have been your sparkly, shining, glitzy 6th birthday my love.

Love always, 
Ema


The Mighty Contributor

Monday, February 8, 2021

53 weeks

Dear Sonzee, 

We are officially one week into year number two without you.  I think year one for me was better because one week into year one I spent in denial and that lasted for probably an additional 20 weeks more, maybe even more.  Year two, there is no more denial, it is just a fact that you are gone.  There is no way to cushion that reality.

Last week completed the second honoring of the day you left us, this time on the English calendar.  It was a pretty rough day for both aba and me.  I anticipated it to be as awful as it was, but aba didn't, so that was something he had to deal with on top of the day itself.  

I couldn't find a name to describe your anniversary that felt right.  Some people refer to it as the name of the child who passed combined with anniversary (ie: Sonzeeversary) or "angelversary".  I don't know. Neither really fits for me.  I just continue to call it the day you died.  So many people reached out to us last week.  We have so many bouquets of flowers, we were brought dinner, I was given some relaxation items and Mrs. Tanzer even made me her amazing sangria.  I ended up making it into work and survived the day.  I am pretty sure I was meant to go because of the conversation I ended up having with Ms. Barb while I sat outside and tried not to completely fall apart. 

Laeya finally convinced aba to get her a kitten. She has been having such a tough time with you gone and she has wanted a kitten for so long.  This little 4lbs of cuteness has turned out to be exactly what she needs.  She is the perfect cuddle companion, and now along with her fuzzy and Sonzee bear, she fits right into her lap for nighttime snuggles.  The only "challenge" is girlfriend cries for her mommy all day long, so as soon as Laeya gets home from school, little Bindi is beyond excited.  Brucie and Bianca have zero desire to engage with a kitten, but you would probably find it funny watching her try to hang with them.  Their body language is similar to how you were when you didn't want to be bothered, they just turn away and get comfortable.

Everyone is painting you special rocks for your birthday this coming week.  I still don't quite understand how you died 4 and will be turning 6 and it's only been a year.  Glittery/sparkly/shiny is the theme, so your rocks will be done accordingly and we have 6 pinwheels that Laeya and I put together to place on your grave along with a birthday sign (or two).

Anyway my love.  I miss you SO much!

Until next time!

Love always, 
Ema

The Mighty Contributor

Thursday, February 4, 2021

Beautifully Horrific

It wasn't until Sonzee that I gave death much thought.  Even the thought I gave was nothing more than simply the potential that it might occur.  However, at some point early on, within the first year of her life, when people asked me if there was a life expectancy, I would matter of factly reply there is little information specifically, but we know we will most likely be burying our child.  Maybe some would cringe if they knew I said that?  Maybe some would even argue that fact?  Maybe they could have been right?  But, maybe I said because it was simply a protective mechanism my brain set in place to attempt to cushion the looming possibility? Regardless, I would say in our case it has proven to be an accurate statement.

Spending days, weeks, and close to entire months in the hospital at a time let us know that Sonzee was truly not a fan of that environment.  It can be argued that no one ever is, but in our case, it was so clear we vowed that no matter what, we would never let her die in the hospital.  When she was a year and a half old we did our first family stay at Ryan House, which happens to partner with Hospice of the Valley, and that is the only place we considered outside of our home that we would let her go to die.

I had never imagined the specifics of her death, even in the life we lived, there is no way to possibly imagine what death might look like, but I did envision peace and comfort regardless of location.  I had always assumed it would feel awkward to let her die in our house and then continue to live in the same space.  I thought it could potentially feel...morbid.  I had those heebie jeebie vibes over the thought of passing by a space that was filled with death.  Then, the unimaginable became our reality, and it didn't seem so scary, it felt right.

The 11 days Sonzee spent on hospice were truly a gift despite the reality of the situation.  We were able to make sure we did what we could in a short amount of time so there would be as few regrets as possible.  I asked anyone who lived through a similar journey or who worked at hospice of the valley to tell me everything they did so I could ensure we did it.  In the end, we did the best we could to ensure we could look back and not have too many sentences that could start with I wish

Whether the decision for hospice is because it is in the best interest of quality of life and or to eliminate the suffering.  Whether the decision is one that is made on behalf of a loved one or the loved one themselves makes that decision.  Whether the decision is one made due to circumstance.  Regardless of whatever the reason may be that a loved one ends up on hospice, it should be made very clear it is not giving up, it is not killing, and it is never a choice that is made out of anything other than immense love. It is the most difficult, painful, beautifully horrific experience that a family can encounter, and it should never be spoken about as anything other than that.

The Mighty Contributor

Wednesday, February 3, 2021

One Year



Dear Sonzee, 

Today marks 365 days that have happened without you here.  I am unsure exactly how all of this time has actually gone by.  It's hard to believe a year ago you were our 4-year-old daughter and in 8 days you would be turning 6.  The concept of time has become this challenging foreign concept for my brain.  I wonder to myself if things will ever change if it will one day revert to some kind of comfortable, but I already know the answer is no.  Nothing about life continuing without you here will ever be comfortable.  It will just be what it is, whatever that ever is.

Nothing really makes sense.  It doesn't make sense that you were born with a spelling error on one of your 30,000 genes and it caused you to endure an entire lifetime of hardships and accommodations.  It makes less sense that after all of those hardships and attempts to create an increased quality of life for you, that you would then have to die.  There isn't even anyone to blame, I feel like that makes it even worse.  I can get angry, and I can cry, and I can experience every emotion under the sun, but I have no one to say hey, this was all your fault! I don't know if having someone or something to place the blame on would make me feel any better, but maybe it would give me a place to direct my feelings?

An entire year has gone by and there is no celebration.  There was no party, there was no cake, there were hardly even any smiles except the ones that were either forced or just situational because I try to surround myself with funny people.  There is something just so I don't know what about a day so significant that doesn't have an appropriate name or something extravagant to represent it.  I was thinking on my drive to you today how weird it is that today is a day of remembrance, and it will be yearly, but yet it isn't a day that I am eager to count down towards.  It isn't something happy I will ever look forward to.  It is actually a day I would prefer to dodge altogether, and a day that will come around every 364/365 days for me to focus extra on something that honestly never leaves my mind on any of the other days.

Today, February 3 will always be a day that represents a larger gap from the last moments we ever had together.  For this year what summarizes the 52 weeks and 2 days since I gave you your last kiss is that my mind still talks to you, and my heart still looks for you, but my soul knows you are at peace.

No matter the number of days that will continue to pass, my love for you will only continue to grow and my yearning to one day give you a cuddle and kiss on your cheek will only get greater.  Until next time my little bear.

Love always, 
Ema

The Mighty Contributor

1:08pm February 3, 2020

Today, Monday, February 3, 2020, at 1:08pm our Sonya Ahava Zaila, better known as Sonzee, took her last breath in the comfort of her bed, in her room, in the same house she was brought home from the hospital as she was surrounded by family and friends who loved her beyond measure.

She spent 4 years 11 months and 22 days bravely enduring more pain, discomfort, and challenges than any person should have in his/her lifetime, however, she also spent her life accomplishing more than many people will during their lifetimes while having an unlimited amount of amazing experiences.

Sonzee was the 4th of 5 born children and was born on February 11, 2015, at 5:57am in the same hospital as all of her siblings.  She loved her mermie, pacifiers, the color red, being read to, anything shiny, and the sound and feel of crinkle paper.  Her favorite songs were "Hooray for Sonzee" and "The Hampster dance". Sonzee enjoyed using her feet as her hands and was known to kick others just for fun, but would also use her feet to communicate by pressing communication switches with them.  Sonzee had many unique talents, such as being a master at seizing, eating via her intestines and through a central line, and communicating with her eyes.  She milked her queen status by being carried or pushed in an overpriced adaptive stroller due to her limited mobility. 

Sonzee's absolute favorite activity was swimming, however, she could also be found driving up and down the sidewalk and the driveway in her pink adapted sports car.  Sonzee enjoyed ice skating, roller skating, sledding, traveling in general, cold breezes, dancing, and taking long walks in all temperatures.

Though Sonzee never said a single word, she touched the lives of many and will remain a constant inspiration.  She is the reason that a non-profit organization was created to help raise awareness for CDKL5 and to give back to the many organizations that assist in the care and enhancement of quality of life.  Her legacy and impact will continue for years to come in various ways.


The Mighty Contributor

February 3, 2020

Day 11 of Hospice

Dear Sonzee, 

The stroke of midnight would begin the longest day of our lives, but your shortest.  3 hours ago we had our in-home shift change and nurse Paige came back to the house after going home to shower and change.  We anticipated you would have already passed away by now, but you were still physically here.  She would sit with us and rotate with moral support since she was officially off the clock.  Auntie A and I stayed by your side doing the medication rotation.  At this point, it was so often neither of us could really sleep.  You continued to breathe and I will leave it at that.  It isn't the type of breathing that makes you feel comfortable hearing or watching as a parent, but it is the type of breathing letting you know that it might end soon.

I forced myself to take a shower at some point.  Aba and I left the room for a bit on purpose.  Auntie A whispered in your ear and even called the time at one point only to say it was a false alarm.  So many tears had fallen I could have sworn my tear ducts would dry up, they hadn't, and they didn't.  

By 2am we sent nurse Paige to sleep in our room, she needed to sleep in case she would be working in the morning.  We told her we would wake her up if anything changed.  She was able to get in a few hours of sleep.  By 3:30am I lost my cool and called hospice.  They came out to listen and to remind us that it could take any amount of time, that you were in charge, and that this really is the awful part but as long as you were comfortable there wasn't anything that could be done.  You were comfortable, I know that...but to be honest, I was far from that.  

We took turns holding you, laying with you, and making sure you knew we were there.  Maybe that was the problem?  I am sorry if we gave you reasons to hang on for so long.  I am sorry if we made you linger when you were ready to leave.

In the morning your siblings decided to stay home from school.  Laeya had been torn about the decision because her class was going to have an event at one of her teachers' houses and she didn't want to miss it, but she also didn't want to leave you.  I could sense her struggle.  By noon we sent her and assured her if anything happened we would send Auntie A to come to tell her.

Our palliative care social worker and nurse came by around 11:30/12.  We all were sitting in your room.  I for the first time in 2 weeks laid you alone on your pillow and sat with my back against the wall.  No one was holding you anymore, we let you rest, but we were all there.  Noam went to take a nap, Meena and Tzvi were just being themselves somewhere else in the house, I am not even sure what they were doing.  The conversation was not focused on you, we were just laughing and talking.

At 1:04pm aba ran into the room.  He climbed into the bed and I remember being slightly annoyed that he was claiming the space directly next to you when I specifically had moved away.  I can't explain why little things irritated me, but they did. We resumed our conversation, and the social worker and nurse were scheduling their next visit.  The social worker kept looking in your direction, I chose to ignore what her eyes were communicating, but I knew she noticed some sort of change.  I had secretly as well, but I just kept focusing on the conversation. 

I looked at you, I looked at the clock, and I remember aba's panic.  I reminded him that you had done the breath-holding multiple times over the last 2 days (but I knew this time what it meant), he began to cry, but I felt a feeling of instant peace mixed with relief that your pain, suffering, seizing, and complications were finally over. At 1:08pm as your baby brother napped in the room next door, as your 2 older siblings were being themselves, as your biggest sister said her part in her class performance that was caught on film at the same exact moment, as life was literally continuing on, and you were satisfied with how it looked from your view, you took your very last breath.

I hope and pray the amount of love we gave you up until your last breath is enough to stay with you for your forever and beyond.  Until next time.

Love always, 
Ema

The Mighty Contributor

Tuesday, February 2, 2021

February 2, 2020

Day 10 of Hospice 

Dear Sonzee, 

Today was the last Sunday you ever lived.  Today was the last complete day you ever finished.  Today was one of the worst days of my life, but I am hoping for you it was close to being one of your best.  Today was a day that your soul was no longer in your body, it was obvious, but yet you continued to breathe and be physically present.  Of all the situations I have ever been faced with as your mother, these next and last 36 hours were by far the absolute worse.

As you know, we weren't given a time line, but I can't tell you how many times I would hear from the new hospice nurse each shift that they would find it hard to believe you would still be alive for x amount of time.  Then that time would pass.  

Aba and I agreed we wanted to remain at home with you.  We hadn't really ever spoken about transferring you to Ryan House during the week, but when I mentioned I wanted to remain at home, he didn't say anything against that and I remember feeling such a sigh of relief.  Nurse Paige worked today, but she was supposed to leave at 4pm. I was petrified of you dying without a nurse present.  Thankfully hospice worked out that one of their amazing nurses would come and spend the time with us.  He sat with us for hours.  He had been privy to some unnecessary family drama over his time in our house, but he lightened the mood when he said it wasn't the first time.  I wonder though if he just said that.

He said he could stay until 8pm, but when it was getting close to that time, you were still with us and I panicked over being alone.  He mentioned your time was limited, so we called Nurse Paige.  She came back.  I think by 9:20pm he left, and nurse Paige wouldn't end up leaving until after you took your last breath.  I was always so thankful for her presence in your life and our life throughout your life, but even more so during your time on hospice, and especially the last few days.

We took more pictures with you and of you today.  The one regret I will always have is after Laeya took a selfie with you I said I didn't want any more pictures.  The picture of you two is so hard for me to look at, but in saying no more pictures, that in turn meant the last pictures of us together occurred today. It would take another two months for me to realize the repercussions of my request.  I wonder if I had allowed pictures if I would wish I hadn't?  I guess we won't ever know, but as another learning experience, I share with those on the same path, take the pictures, you can always erase them or just not look at them.

I won't go into the details of how you presented today.  I think that is something best left to those who have to endure this indescribable experience.  I also don't have the ability to write it out in words.  My last letter from our time on hospice will be tomorrow.  Until then.

Love always,
Ema

The Mighty Contributor

Monday, February 1, 2021

February 1, 2020

Day 9 of Hospice

Dear Sonzee, 

Today was Shabbat.  It was the last Shabbat you would spend with us. The day was a horrible, horrible, horrible day.  You had the very last seizure of your life today, and you received the nasal rescue medication I argued too many times about getting with the insurance companies and CVS. Today the hospice team came out a few times to try and help us keep you comfortable.  It was a day filled with many tears.  We finally managed to get you comfortable with round the clock medications.  That was a tiring and awful task, but one that I felt made your life come full circle.  I had always thought at this moment it would be time to move you to Ryan House so I could be just mom, but, in the end, I wanted to just do what I had done your entire life.  It made sense, but I couldn't do it alone.  Auntie A would end up staying up with me all night to help.

Today would be the last day that we would see your eyes open.  Today would start this horrific battle within my mind.  On the one hand, I wanted you to be at peace and comfortable and I would continuously tell you that it was okay to leave, but on the other, I didn't want you leaving.  It is difficult to admit that some of my thoughts led more towards wishing this process would simply speed up.  It was excruciating because at this point I wanted it all over, but I didn't want you dying.  There was no way to have one without the other.  Nothing could ever be worse.  I watched you seize and suffer for close to 5 years, and yet watching you slip deeper into death over the next 48 hours will be something that haunts me for the rest of my life. 

We were told you would likely die soon, but there was no way to know when, and it was completely up to you.  We were told children can be very particular about how everything pans out, some children want their parents by their side, and some capitalize on the one moment escape from the room.  I forced myself to leave you to shower, I tried to make sure you knew it was ok, but I know aba was not really on board.  Our continued conflicting unspoken opinions I am sure made it all the more challenging for you.  I know deep down you knew that neither of us would ever really be ready for you to leave us, but you also probably knew that we were ready for you to stop suffering.  In true Sonzee fashion, you would make sure it was all done the way you wanted.  In true CDKL5 fashion, my type-A personality wouldn't matter.  I wouldn't be privy to any insider information.  I wouldn't have any upper hand in how any of this was going to pan out. I would simply just have to sit back and continue to be a bystander of your life, unable to truly help you.

Until tomorrow.

Love always, 
Ema




The Mighty Contributor

52 Weeks

Dear Sonzee, 

52 weeks.  52 Mondays.  2 days away from an entire year on the gregorian calendar.  How? What? Why? I don't understand how it feels like it was this Monday, today, that I held you one last time and gave you a kiss on your cheek.  I can feel your weight in my arms, I can feel the softness of your cheek, I can remember my lips kissing your forehead, whispering in your ear, and the feeling of the curls on your head.  I hope and pray they are things I never forget, no matter how many Mondays continue to pass.

Last Monday I chaired my very first ambulatory PFAC meeting.  I was so nervous and relieved after I finished when everyone told me I did a good job.  I took so many notes for our meeting that is happening today, I am still just as nervous, but maybe I feel calmer after today.  This past week was fairly routine for all of us, except aba went to visit savta so I was flying solo all week.  We all made it through and your siblings even stepped up their games by preparing their snacks, water bottles, and masks the night before school so we don't have to be scrambling in the mornings.  They still enjoy sleeping in every school day and waking up ridiculously early over the weekend, but I don't know if that will ever change.  

We were supposed to go to Bear Pines over the weekend, but your siblings can be really lame sometimes and they decided they didn't want to sit in the car. I went up yesterday with bubbie and there was so much snow piled to the side of the roads, I was in awe.   Our Snowzee that measures the snowfall is completely buried, I had to laugh, clearly, we got a wee bit more snow than she can measure.  Our driveway has a nice clear path thanks to someone we have come and clear that and porch off when there is more than 6inches at a time falling, and the drainage area to the side is completely packed with snow, so it is actually making our driveway a bit bigger.  However, you have to park away from the sides because if not you cannot open the car door.  On that note, the backdoor is pretty comical to look out of, considering the snow is halfway up.  You can hardly see the bridge, and forget the rocks.  I went to the mailbox and laughed as I climbed 3ft up to open the box to check inside.  There are so many icicles hanging from the roof and they are taller than Noam, and maybe even Meena, I took pictures from the side, they could surely cause harm if they fall on anyone.

Today starts FBC returning in person, I am seeing my virtual caseload today, and starting in person tomorrow.  I am planning on going to West Valley, Wednesday, but I am honestly unsure how that might work out.  I may attempt to show up and see how it goes, I just don't know how I will feel, but it might be nice to be there. It's all so hard.  

I still don't have anything planned for Wednesday? What do you even plan? I can't. There is nothing to celebrate, just to honor, and that lately just involves tissues, tears, cheesecake, wine, and painting rocks.  52 weeks of this and I still have nothing figured out, it still feels awful.  I was able to tell someone yesterday that on Wednesday it will be a year since you died.  I didn't cry saying the words, so that was a plus?  The tears started to come shortly after when I continued to tell them about why we named Bear Pines what it is, and why there are bears and red accents. So I guess I can count delayed tears as a positive baby step?

I am torn between waiting for a time that things get easier, or different, and afraid of when that time might occur. It all sucks, it always will, but knowing you are at peace means it isn't sucking for you and that makes me as happy as I could possibly be.  I miss you beyond any words and love you the same.  Until next time.

Love always, 
Ema

The Mighty Contributor

Sunday, January 31, 2021

January 31, 2020

Day 8 of Hospice

Dear Sonzee, 

Today would be your very last Friday and very last January you would ever live during.  Every morning this week before school your siblings all came to give you one last kiss, just in case anything would change during the day.  We asked each of your siblings what they wanted in terms of being notified if something happened, so we knew their wishes.  We made sure to ask them so they would know and understand we respected whatever their wishes would be and aba and I didn't want to force our own thoughts and wishes for them onto them.  Every morning since Monday they would come to your room and jump into bed.  I took so many videos and pictures, I am so happy I did.

Today would be the last walk you took in your stroller.  Aba was adamant he and Nurse Paige take you out, I waited in your room for your return.  You were not in the most comfortable place today, and after your walk that had not really changed much.  It was so horrible to watch you be uncomfortable.  Today was the beginning of the most hellish weekend of my entire life, there is really no way to explain everything that you endured your entire life, but watching you die, while we gained peace and comfort for you, was absolutely the worst experience of my life.

You had another bath, I think we did them at least daily as part of our routine and to help with keeping you comfortable and ensuring that you were always in clean pajamas so you felt your best.

Today I asked myself if hospice was really comfort-care.  I know it was, and that it is, but today you were so agitated I didn't know what to think.  There was a point today where I doubted everything we were doing.  I struggled with wondering if you were just hungry and not actually dying and we were killing you.  I considered throwing you into the car and driving as fast as I could to PCH for them to fix everything and make you better.  I felt like I was going down one of those water rides that resembles a toilet, I was just spinning.  

I was so upset about all of your seizures today.  I couldn't understand why you started to seize again and I HATED that they were making you uncomfortable.  You were on 10ml an hour of Pedialyte and everything seemed so miserable for you.  We had exhausted every medication in the hospice arsenal and nothing seemed to be working, it was absolutely horrific for both of us.  I am so sorry things got so out of control and I hope you don't remember how awful today was.

I had not googled one thing about dying or the end of life, and it wasn't until after I started to doubt every choice we made that it was shared with me that everything occurring was normal for the end of life.  I could have hurt every person who knew that but felt they were protecting me by not sharing things until they happened.  I made a vow at this point to make sure any of your friends' parents who enter a hospice journey are at least asked if they want to know all the details beforehand so they have some warning. It feels like the least I can do in offering support because it really isn't one of those things that you want to just learn on your own.

Today was definitely one of the most horrible days, but this weekend would prove to me that it could always get worse.

Until tomorrow.

Love,
Ema


The Mighty Contributor

Saturday, January 30, 2021

January 30, 2020




Day 7 of Hospice

Dear Sonzee, 

Today was your last Thursday.  You can guess that again today was filled with an abundance of hugs, cuddles, kisses, and love for you from so many people.  On today's list of squeezing in a lifetime of memories into a small amount of time, it was a family hand mold.  I was searching for hands mold kits on amazon two days ago when I came across a kit that was for an entire family.  I did a moment of hesitation and then it landed in the cart and then into the house.  I had a lot of naysayers, (echem, Aba), but I was determined to master this challenge, and not to brag, but boy did this mold turn out to be the most amazingly beautiful item our entire family will ever create together.  Thankfully pop-pop took a video of the majority of it, and it one of my most favorite videos of all time.  So much chaos, laughter, insanity, and screaming that it's hard to watch it without laughing and smiling the entire time.

Today was the day that I arranged how we would be giving your GJ tube syringe to those who would be handling your care after you died so they wouldn't struggle with removing it from your body.  Really it was Mrs. Zupnick thankfully who took care of it all, all I did was send her a picture of the tube itself so she could explain it best.

Today your rash came back.  It was on your cheeks mainly this time.  Bright red and also puffy.  I was really wanting to know what the rash was, it didn't matter, but I needed to know.  Your eyelids also began to get puffy again, it was so confusing to me because you had next to no fluids going into your body at this point.  In the end, I think we attributed this rash to the liver failure you were in, but nothing really ever confirmed that theory.

I had been really good about screening all my messages, phone calls, texts, etc., but today one of those random ones fell through my screening.  I stupidly thought because the person who reached out had a child diagnosed with CDKL5 it would be a message of comfort, but sadly, it was the complete opposite.  They went on to share with me that they knew exactly the position we had found ourselves in, except, she was selfish and decided to keep her child in the hospital so their child is alive, but next time they would do hospice.  It was at this point that I stopped caring about comforting others, or if I sounded like a b*tch, and simply wrote back that "this wasn't a choice, but thanks."  I no doubt assume they meant well, but sometimes (really 100% of the time) less is more, and not saying anything is better.

Aba and I spent months discussing choice regarding placing you onto hospice or not, in the end, our conversations were pointless because you made the choice for us. I will always be thankful to you for doing that for us.  I just wish people wouldn't say stupid things not understanding entire situations.  I wish people understood that hospice can be a choice that is made when your backs are up against the wall and there are no other options besides hail marys.

Today was the day we were listening to relaxing music during the day and Uncle Mathias looked like he had fallen asleep sitting against the wall, eyes closed, fully relaxed, only to abruptly jump up and literally run out of the house like Forest Gump.  I wish I had saved the camera recordings from the house and your bedroom so we could watch that moment forever on sad days.  I think we laughed for literally hours and days over this.

Today was the day your body for some reason would begin to seize, something it had not done since January 17.  I was so angry, I was so upset.  I didn't tell anyone about the first one that I saw except nurse Paige saw it as well.  Eventually, we told Aba.  It was really disappointing.  I had no desire for you to be seizing while you were actively dying. That was not how things were going to go.  Your body was so tired and weak it was even more horrible watching you seize than it had been your entire life.  Seizing was your claim to fame, you seized like a champ, you perfected that art, I wouldn't let it go down with you half hazardly being able to seize.  I was really angry with G-d over this.  I just wanted you at peace and in complete comfort.  That was not on my list of things allowed during your last days on earth.

Today my eyes and face would start to turn a permanent shade of red myself as the tears were challenging to keep at bay.  I stopped allowing as many visitors from this point forward because I wanted everyone to remember you awake and in your typical Sonzee manner.  I had thought it was already bad, but this weekend would prove to be some of the most difficult days of my life.

Until tomorrow.

Love always, 
Ema 

                                       

The Mighty Contributor

Friday, January 29, 2021

January 29, 2020

Day 6 of Hospice

Dear Sonzee, 

Today was filled with much of the same of the last couple of days.  Lots of cuddles, more visitors, and your room filled with love.  We have some of the sweetest pictures of you and Noam from today and a video of you and Tzvi that if I ever have the courage to watch the entire thing I think I will give myself a medal.

Today I received a text message to confirm your monthly TPN appointment with Dr. Williams on Feb 4, I replied No when it asked if we planned to attend.  It took over an hour to press send.  Today your brother was invited to skate with the 10u kids for the upcoming Monday, February 3, we said yes to him going.

Today I was really struggling with this whole hospice ordeal.  On the one hand, I was petrified for life without you, but on the other knowing you were dying and watching the process is just something I won't ever fully be able to recover from.  I wish someone would have just moved in with me and explained every aspect of the process.  Someone close to me reached out today as if G-d told her what I needed to hear and it summed up my feelings exactly.  It was nice to not feel like I was alone. In terms of my ability to cope with the situation, today would be the last day that I felt like I was holding myself together.

Tonight after my bath as I walked by your room I heard bubbie and Tzvi playing with you.  Tzvi was having a tough time with his feelings and this whole you dying process.  He and bubbie decided to go on a trip wherever he wanted and chose "Sonzee land".  Like I mentioned earlier, if I can bring myself to rewatch that video in its entirety it will be something special.  I recorded the entire 8 minutes without him noticing, standing to the left of the doorway.  I had ironically taken the bath to relax, to collect my thoughts, and to cry all of my tears alone, but apparently, I still had more.  Tzvi gathered all of your stuffed animal friends and bubbie had a couple herself and you were right in the middle. "In Sonzee land, you could do whatever you want".  After he played with you, he read you books.  My only regret is that he asked to sleep with you and I said no.  It was partially selfish because I didn't want to give up my spot next to you tonight, it was also because I was torn on whether it was appropriate since he was an 8-year-old boy and you were a 4-year-old girl.  Did appropriate even matter anymore? What is really appropriate in any case when your 4-year-old is dying? I don't know why I didn't just pull out the trundle bed and let him sleep there, I wish I would have. 

Today would be the last day you were as awake as you were and it would be the last Wednesday you would spend in your bed. It would be the last day where I didn't spend part of the day angry at the situation, G-d, and over my notions of how comfort and reality don't always match up...but I will save all of that for tomorrow.

Until tomorrow.

Love always, 
Ema

The Mighty Contributor

Thursday, January 28, 2021

January 28, 2020

Day 5 of Hospice

Dear Sonzee, 

Today would be the last Tuesday you ever saw.  Today was the day Aba and Auntie A would go cemetery hopping and shopping in order to find you your forever home.  I knew my limitations.  The first was that I couldn't leave your side, not when I didn't know how much time you would be here for.  The second was that I just simply wasn't strong enough to do it.  The third was I just don't do cemeteries (but really who does?!). Auntie A was so amazing, the minute I said I wasn't going, she jumped up and said she would go, I didn't argue, I honestly didn't even feel guilty about it (I still don't).  They drove to every Jewish cemetery to make sure they knew all their options.  There was very little I cared about, I just wanted you to be near a child if there was no designated children's section.  Aba sent pictures of what would end up being your current space, I could hardly understand what I was looking at much less say whether I agreed or not.

I will say for such a horrible task, the two of them did perfectly.  You would be diagonal from a little girl, Charlotte Avery, who happens to be Meena's age, but sadly died within a few weeks of being born.  I would have preferred she be next to you or behind you, but those spaces were already taken.  Auntie A said she felt a calmness come over her when she stood in your spot and so she knew it was meant for you.

Today was the day that your father would sell the stocks of the company that had a trial drug for CDKL5 that he had invested into so that one day he could pay for your wedding but instead, we were now going to use to pay for your funeral and the related costs.

Today you had more visitors, more people who wanted to snuggle you and say goodbye.  I believe today would be the last day you would go into your swim spa.  Aba took a lot of selfies with you today and I took a ridiculous amount of videos and pictures of you and your siblings.  Noam spent the day sitting on you or next to you in bed.  He made sure your paci was always in your mouth and he gave you lots of kisses and snuggles. 

I received so many amazing pieces of advice on what to make sure we did with the little time we had left, so today after your bath was the day that Nurse Paige would make sure you had one of your claim to fame boingy curl ponytails and we would give you your very first and only hair cut.  We put your hair in a little hair tie and one of your S bows, the purple one, and cut.  It was such a great job because we did it from underneath in the back so no one could really tell what we did.  That helped my heart for the next few days.  

Today was another day closer to our last day and we did the best we could to make the most of it.  It was a hard day emotionally, but tomorrow would be worse.

Until tomorrow.

Love always, 
Ema

The Mighty Contributor

Wednesday, January 27, 2021

January 27, 2020

Day 4 of Hospice

Dear Sonzee,

Today was a Monday. It would be the last Monday you would be alive past 1:08pm.  Today there is one of my favorite pictures that aba must have taken early in the morning of you and me sleeping together.  I also took a ton of selfies of us today.  Today I was convinced to celebrate your 5th birthday.  I had been ignoring the suggestion for a few days, but then your friend Emma and your friendship circle family planned it all so really we just would have to be in the house, so I obliged.  That stupid pink shirt with five written across it that I received a week and a day ago when I allowed myself to believe you would be turning 5 was taunting me on my desk.  I guess it turned out to be a premonition and not just one of those fearful dreams when last January I dreamt I ordered you your birthday shirt and you ended up dying.

You had more special visitors today.  You were certainly so well-loved, that I know for sure.  I didn't really want to celebrate you turning an age you weren't really going to be, but you appeared to enjoy it, so maybe it was the right choice.  I only invited your bestie Corrinne, and on short notice, but she popped right on over and in a perfect sequin red shirt no less.  It was as incredible of a birthday party that could have been considering everyone knew you weren't officially going to be turning 5.  We have video and pictures galore, I have 2 albums from it and an entire video.  I haven't looked at them, and I can't watch the video.  I don't really need to because I remember it like it just happened, and I don't want to because it is just too hard. 

I couldn't bring myself to put that dumb pink shirt on you, so Nurse Paige did it for me.  Seeing you wear it was hard enough, I just couldn't dress you in it myself.  Your sisters sang "a million dreams" and everyone went through every emotion possible.  I took a good amount of time looking around at everyone during the entire time.  There were sad tears, happy tears, smiles, laughter, you name it, it happened in that room.  Singing, dancing, everything.  We had a huge red 5 balloon, but we never got to take your 5-year pictures I had been planning in my head.  You had bouts of being awake between closing your eyes to rest, and everyone there took pictures with you.

Today marked a week of your feeds being turned off.  Every day you didn't have actual feeds was another day I was in pure shock and awe.  You looked so much healthier than you had a week ago.  You had more energy than you had in days.  You were almost yourself.  Today was the first of a few days over the last week of your life that my mind would tell me you were getting better, that you weren't actually dying.  Then I would remember you were perfectly content not eating and you were living off of just Pedialyte at way too low of a rate to actually sustain you.  I think those moments of reality were the worst slap in the face.  The mind games were so so hard to combat.  

Overall, today can be rated as a decent day.  Tomorrow would turn out to be a heavy heavy day.

Until tomorrow.

Love always, 
Ema

The Mighty Contributor

Tuesday, January 26, 2021

January 26, 2020

Day 3 of Hospice

Dear Sonzee,

Yesterday was the day we received the pending lab work that we had completed on Thursday night. They called during Shabbat and I will admit I answered the phone. They said everything I knew but didn't realize I needed to hear and everything we all knew aba needed to hear to have his “proof”.  All your typical CBC, run of the mill labs were normal. You didn’t have an infection at all...in fact, your body DIDN'T even think it was stressed because you didn’t have your typical leukemoid reaction. Simply put, it all pointed to what my instincts had told me almost a week ago.  It didn’t really make it any easier to digest, but it brought some order to the situation of the unknown.

We began to tell more people before we made it Facebook official. There were a few texts that needed to occur before we essentially let your Facebook followers know where your journey has headed.  That was a hard post to type, but more difficult was reading the comments that followed. To be honest, I still to this day, a year later can’t bring myself to read them all. There are still private messages, phone calls, and text messages I haven’t responded to or even read.  I just still can’t.

Today I started to pick and choose who would get what type of details and who would just get an overall update. It wasn’t meant to be mean, it was simply because this situation is a delicate one and people mean well, but people also feel they know best or that they have the answers.  Someone always knows better or would do it differently.  There were no answers. We did everything we could. We didn’t need people telling us there was more, or this is how they would or wouldn't do things when they had no clue what was really going on. We had always heard bonehead things be said throughout your life from people who meant well, and it is truly amazing just how comical some of the words and phrases are that come out of a persons mouth.

The majority if not all people who reached out to us offered prayers, thoughts, and tons of support.  There were a few outliers who thankfully reached out to just close friends of ours and asked them the more ridiculous questions, or made the more ridiculous comments to them.  We had people ask if we had consulted with a rabbi, or what a rabbi's thoughts were on the situation.  I still don’t have a nice way of replying to some of the things people have and continue to say, so I just choose to not respond at all. Thankfully no one actually asked me to my face.  To be honest, whether we did or did not speak to a rabbi is not a single person's business, but I will leave it out on the table that when I say we did everything we could for you, and that there was nothing more to do but support your body, we had the blessing of every doctor and orthodox rabbi with knowledge in the complex arena of pediatric care like yours.

Today you looked so much more like yourself. The swelling was nearly gone, and you received nebulizer treatments and lots of cuddles. Your Pedialyte was set to 20ml an hour and you were still coughing.  Someone wise came to visit today and we turned off your feeding pump for a bit and you seemed to relax.  Aba eventually turned it back on.  We were in a silent battle with the pump, but I ultimately let him do what he needed.  You had a day of so much love and important visitors. I took tons of pictures and videos today.  I wish I had looked cuter myself, but as I said then and still do, considering the circumstances I guess it is what it is.  Hospice of the Valley sent a photographer out to see you today.  Aba took you to the pool, I couldn't go in, but I held your foot and there are pictures of me with you both.  That pool was always your happy space.  After you swam aba felt a huge wave of relief.  His biggest fear was not being able to take you in the pool one more time.  Until you lost joy in it, he took you in.  

After your time in the pool, I wrapped you in your bunny rabbit towel outside on the grass.  Your siblings all joined us and we would take our very last professional family pictures ever.  I regret more than anything my at the time casual stance of embracing the moment as it was.  I felt so vain for even considering we dress up or look cute.  I wore a pretied scarf to cover my hair...I didn't even bother to try and look more than I felt. Your siblings made their usual complaints and sighs over smiling.  I remember through gritted teeth I said "these are the last pictures we will have with your sister, so smile".

At times today, you were delirious.  You would randomly smile...we wondered what you might be seeing.  Today was the last day that you used oxygen.  It would be the last time I would put the pulse oximeter on you and the last time I would use the numbers for any reassurance or information.  You had started to be visibly annoyed by the oxygen tubing and our focus was your comfort, so we listened.  It was scary.  

Your life was hard, the last week was harder, but the final week with you would prove to be the hardest.

Until tomorrow.

Love always, 
Ema


The Mighty Contributor


Monday, January 25, 2021

January 25, 2020

Day 2 of Hospice

Dear Sonzee, 

Today was Shabbat.  Auntie A came over in the morning.  She would later tell me that it was on this day that she realized the gravity of the situation.  The hospice nurse came to check on you and was so respectful of Shabbat.  He answered all of our questions the best he could and anything he needed to find out he went outside to call about and came back with answers.  At one point after he left, he ended up driving back to let us know some other information.

You finally started to look more like yourself today with much less swelling.  Thank g-d the medication worked.  The negative of that is for the rest of your life it would mess with our minds that you were actually doing better.  We would have to remind ourselves that while yes you looked significantly better, the reason for that was the significant decrease in your fluid intake and the lack of feeds.  The feed part was the most challenging concept for aba and me, but like hospice explained multiple times, it is like when you are sick with a nasty virus and you have no desire to eat, if we made you eat it would be worse.  (Aba did occasionally try to increase your fluid rate, but would quickly realize your body just couldn't do it anymore).

Today hospice of the valley came out to do your fingerprints and some hand and foot molds.  The full circle experience was that one of your nurses from PCH happened to be the person to come and do those molds for you.  I wonder if she felt some sort of completeness to be able to do these for us?  For me, it felt comforting and fitting to have someone who had cared for you be the one to take your last foot and handprints. Today was also the day that Rabbi Rodal came over to do the priestly blessing for you, it would be the last time you would hear it.  

After Shabbat ended I gave you a bath, you were so tired, you slept through it.  Mrs. Emily and Mr. Andrew came to take our pictures.  My only regret is that I didn't bother having everyone wear anything matching.  My brain was saying just keep everything real.  I wish I would have at least had you match your sisters one last time.  With a disaster in the background of almost every picture, we took our very last set of professional complete family pictures by our friends.  They are the pictures I will cherish forever, and will probably be the last set I will ever hang on the walls if I can ever bring myself to even do that.

Today was a successful day but would be another day closer to the day you felt we were ready for you to be able to leave.

Until tomorrow.

Love always, 
Ema



The Mighty Contributor

51 weeks

Dear Sonzee, 

This week has been a challenge to put it simply.  Today marks 51 weeks since you left us, but last Thursday we lit a candle to honor a year on the Jewish calendar.  I don't quite understand how there could be such a large amount of time between two of the same dates, but I didn't create the calendars so here we are.  I feel like the 13-day difference is way too much, especially for year one, but maybe also for every year yet to come?  Maybe the irony will be when I find myself disappointed at the dates aligning in the future, on a year I have to identify because the thought of looking at years to come of either of your anniversary dates makes me physically ill.

Last Wednesday I placed a solar light next to your monument since your candle and bench have yet to arrive at the cemetery.  I also placed one next to the rock in the front yard.  I decided the one in the front yard will be remaining, and from now on I will just be making gardens out of solar flowers with different insects or birds, like the one now that has a butterfly.  I think these will actually have a chance at lasting considering they only require the sun (we shall see).  

On Thursday we gathered at your grave to say some psalms and mourners kaddish.  It doesn't get easier having to gather on your behalf with a stone as your stand-in.  I visited you 3 different times, for some reason, I just needed to be with you as much as possible.  After the last visit, with your siblings, we drove up to Bear Pines.  I had to get away, I really tried hard to not run from reality, but in a sense I am still honoring my pledge to not run from my grief, because my grief said, you need to change your scenery.  And scenery change it certainly was.

On Friday your siblings played in the small amount of snow that was around the house, by Saturday morning we were in a winter wonderland, complete with the ability to make a mini hill for sledding, multiple snowball fights, and for building snowmen, we made 4 little ones. Snowmen building is definitely not my strong suit.  The ice rink has turned out to be quite the fail, so now it holds about 15 billion tons of snow and in April when the snow melts, aba and I are going to level the land and figure things out for next winter.  On Sunday we woke up to more snow than I can recall seeing happen within 24 hours.  We had to dig both aba and my car out of the driveway and your siblings spent the morning sliding down Ms. Bonnie's driveway into the unplowed street.  Overall it was quite a successful weekend, except, the entire time my mind would remind me why we have the ability to disappear into a snowy Winterland whenever we want, and so as always, it was a double-edged sword.

You would have loved to sled in the backyard, you honestly would have loved the entire experience, unlike your baby brother who has an unspoken but well-known rule that if he gets snow on his face or his glove falls off it's time to go inside and get warm.  As long as he was distracted with sliding down a hill or attempting to walk through snow half his height, he was in heaven.  G-d forbid someone throws a snowball at him and aba or I had to retreat inside.  2/4 of your siblings brought their Sonzee bears, and all of us I am sure had you on our minds.

I came home to a box filled with beautiful amethysts, I will be bringing one for you to have, they are from Mimi's family.  I also received a beautiful bracelet from Mrs. Penny, it has a momma bear and a baby bear, and it is now part of my Sonzee jewelry ensemble, which seems to keep on growing.  I added 2 new items to that beautiful necklace that Kole's mommy gave me last year that has your picture etched into the silver circle.  I now have your little fingerprint that Hospice of the Valley did for us (ironically a year ago today), and a beautiful quote on a circle charm with 2 hummingbirds. The jewelry is another one of those second rate ways to make me feel like you are constantly with me.

Anyway, baby girl, I miss you beyond words.  I love you even more.

Until next time.

Love always, 
Ema

The Mighty Contributor

Sunday, January 24, 2021

January 24, 2020

Day 1 of Hospice

Dear Sonzee, 

Today was the day we finally agreed that hospice was what was best for you.  The lab work I did to prove to aba that you weren't sick started to come back to us.  I was honestly (secretly) really nervous.  I was not sure if your body was going to play one of those tricks where your labs would look perfect and it would therefore leave aba still fighting that you were sick.  One of your biggest claims to fame was having an abnormally high white blood count when you weren't really sick, so despite my 100% outward display that I was sure you were dying, I still had a little bit of doubt, that maybe he was right.  I always said I was bound to be wrong at least once during your life...however, that time never came.

The basic CBC panel that would include the labs to indicate illness was for some reason pending when the first call came in.  Your CMP, the metabolic panel, and liver panel that we had just ran not more than 20 days prior for your routine TPN check was the first set to come back.  They indicated your liver was not functioning properly, your albumin, phosphorous, protein total, carbon dioxide, potassium, and triglycerides were all abnormal.  It was the first set of confirmation aba needed, but what he really needed we would have to wait until tomorrow to receive.

I didn't take many pictures of you today my love. I am sorry, but you were so swollen, you couldn't even open your eyes.  Two of your teachers from school called and asked if they could come and see you.  I felt anyone who asked, who meant something to you, was allowed and more than welcome to come and say their goodbyes in person.  Writing that makes the tears flood down my face, and while I never said those words aloud, it was the unspoken reality of the situation.  I warned them because you didn't look like yourself, I was afraid it would be too much for them.  They told me they didn't expect you to look great under the circumstances.  I took a picture of the 3 of you.  I haven't been able to look at it again until today.  Gosh, you were so beyond loved throughout your life. 

I think they came as the hospice nurse was finishing up admitting you, either that or right before she came.  Admitting you to hospice was one of the most unreal experiences of my life. I don't think I had been as up and down with my emotions over a 2 hour period as I had been during that meeting.  I think I said at least 300 times, "this isn't real".  It didn't feel real.  I couldn't comprehend what was really happening.  I don't recall feeling any sort of relief during or after you were admitted.  I just remember feeling like the rollercoaster was getting completely out of control.  

Your first dose of medication came to (hopefully) help you reduce your swelling.  You had hardly urinated for almost a week.  We were advised not to start your TPN or lipids that night after the lab work came in.  Your port was never accessed again.  You had not had any formula feeds for 4 days at this point.  You were somehow surviving on no more than 15ml an hour of Pedialyte around the clock. (all those times we frantically rushed you to PCH when your tubes would break proved in the end to have been unnecessary based on how little the lack of feeds actually impacted your ability to live)  We prayed in the morning you would be able to open your eyes and the swelling would be decreased a bit.  I texted Mrs. Emily and asked her if she and Mr. Andrew could come tomorrow night to take (one of our last set of) family pictures after Shabbat ended.  Hospice of the Valley also had a photographer coming on Sunday, but those were slated to be you in your Make a Wish pool.

We started to cram a lifetime of experiences and memories into however much time you were planning to be with us.  That was a panicky feeling, we just didn't know the timeline.  My Type A personality really struggled with the unknown.  Hospice told us it was up to you, it could be weeks, and some children live months on hospice.  We knew that last part wasn't a reality for you, but I at least hoped it would be until we accomplished the items on my checklist.  I had thought up and until now was the hardest part of everything, I would quickly be reminded that wasn't the case, and I should have known because things can always get worse.

Until tomorrow my love.

Love always, 
Ema


The Mighty Contributor

Saturday, January 23, 2021

January 23, 2020

Dear Sonzee, 

Today you swelled oh so much more, despite our best efforts to limit your intake.  Nurse Paige gave you a bath...I feel like I recall you not being uncomfortable during it.  You had so many snuggles today. We still didn't know what to tell your siblings, we let them give you hugs and kisses and spend as much time as they wanted because we didn't know how much time you had left.  They made you pictures that said, "feel better".  They assumed that because we had not taken you to the hospital that meant you couldn't be that sick.  Being unable to find a middle ground (again/still), Aba and I continued our adamant differing opinions and desires, until Dr. Wendy made the call to send out a hospice nurse along with our social worker to assess the situation.

That was a really tense situation.  They both arrived and I could read their faces completely.  I knew they agreed with my assessment.  Our social worker for sure didn't get paid enough to offer the amount of support she did for us.  She did as good of a job as anyone could trying to talk with aba, but aba just wasn't having it from anyone.  He was not giving up.  He couldn't understand even now that it wasn't up to us...we had done everything we could, it didn't matter, you were calling the shots from now on.  As an olive branch, I asked Nurse Amanda to come and do a set of labs.  I was vehemently against the proposed idea to take you to PCH only to have them tell us "there was nothing to do" and then have them admit you to hospice and come back home.  Over my dead body was anyone taking you out of the house and into that ER to end up right back where you were.  I stated that really loudly...I am sorry for all of the screaming and fighting that happened right next to you.  I bet you wanted to sit up and tell us all to shut up.

After the visit, aba was still not able to agree to hospice, so I was told by our social worker that she did put in a note that if I called hospice myself there was approval at this point to admit you.  The hospice nurse told Sam that he needed to do something, either take you in himself or get you admitted to hospice.  You were swelling just too much...something needed to be done to make you comfortable.  You didn't complain, but I am sorry if you were in any pain over our inability to be a parental unit.  I can't imagine the amount of swelling you felt was comfortable at all.

In the evening we accessed your port and nurse Amanda did your labs. By nighttime, your swelling was getting even worse.  You couldn't clear the fluids from your lungs.  At 2am after aba and I cried many many tears, aba called to admit you to hospice himself.  I think we both cried ourselves to sleep if we even slept?  From that point on I wouldn't leave your side. I whispered to you every night onward that you were such a brave and strong girl and whenever you were ready it was okay to leave.  We still hadn't told many people.  It would take me 2 more days to be able to post about it on your Facebook page to let everyone whose lives you touched know that your time with us physically was limited.

Until tomorrow.

Love always, Ema

The Mighty Contributor

Friday, January 22, 2021

January 22, 2020

Dear Sonzee, 

Today the few people who were aware of the situation going on all checked in on you. Everything was essentially, "the same".  I went to work today.  It would turn out to be the last day I would physically step into FBC for work in what now has been an entire year.  I was perplexed over your rash and one of the para's at West Valley son's had a rash randomly also so I clung to the fact that maybe, just maybe, what you had was just some random virus.  I played the "what if" we went to the hospital game in my mind. What if we went and at least received confirmation that it was not any of the viruses on the PCR swab.  What if we went and they said there was a way they could help you.  I kept this soundtrack to myself.  I had to appear like a bull to aba because he was playing this game aloud as it was so I couldn't show that I was considering these thoughts or off to the hospital you would have gone.

Deep down, I knew.  I knew you were not sick.  I knew the interventions PCH would have done, would have been with your best interest as a doctor to do, but I also knew in your current state that would require interventions that crossed our hardline and there was no guarantee they would reverse what had already begun and then you would have died at PCH.  We promised ourselves and you that you would never die in the hospital.  No matter what he had to do, it was home or Ryan House, that was the final answer.

You looked worse today in terms of swelling.  Your feed had now been off for close to 2 days.  You were on Pedialyte, but we kept having to lower the rate or your lungs would fill with fluids.  Aba was against lowering the rate, soI let him take over your pump.  I couldn't keep having you choke.  He would keep the rates as high as possible for as long as he could before you would show signs of coughing and or choking.  I wanted it off, I couldn't bear you coughing, choking, and essentially suffering any more than you were.  It was a horrible place to be.  We were in touch with all of your doctors, we were receiving guidance, but we had not officially admitted you to hospice.  They were there to listen to both aba and I give our perspective and wishes, but ultimately when aba was asked, he wasn't ready for "comfort care".

I wasn't ready to have your death sped up in a hospital.  I knew the outcome.  So for the first time in your life, I stood my ground solidly.  It was not easy baby girl, but I knew I had to for you.  I was done humoring everyone to prove what was happening.  I didn't need to be told "you were right".  I needed you to be as comfortable as possible, in your familiar settings, with your people, and no PCH restrictions of who could see you.  I didn't need to humor anyone on your behalf anymore.  So I dug my heels into the ground and held firm.  It would get harder tomorrow.  Tomorrow it would feel worse than the last few days had...who knew that it is essentially how every day onward would turn out to be.

Until tomorrow.

Love always, 
Ema


The Mighty Contributor

Thursday, January 21, 2021

January 21, 2020

My dearest Sonzee, 

Today is one of the hardest days to write about.  It isn't like any of the upcoming recollection posts are easy, but there is something to be said for finalizing a decision and moving forward because otherwise you are just stuck, which would be how it was today.  Today a year ago I dropped your siblings off at school and drove over to FBC and sat in the parking lot.  I was torn on whether I should work today.  If it wasn't the flu that you had then I wouldn't have panicked over potentially exposing other medically complex kiddos.  I was really conflicted on what to do, so I reached out to Miss Jaime and she agreed that I should stay home until we knew.  Phew! That removed a lot of the guilt I felt over not delivering speech services, but the safety of other children in your position was something I have always felt extremely strong about.  You know my feelings on "allergies", so the potential of something deadly walking into the halls of FBC on my clothing made me feel sick.

I drove home.  Meena was having an evaluation at Madison Elementary, so I checked on you before I picked her up to take her. You were in bed the entire day.  Today was one of the last days I would get into an insurance argument over medication of yours not being covered.  (PS: They finally called to tell me it was ready to pick up 2 days after you died).  I had little to no patience to deal with anyone trying to tell me "no you couldn't have the new nasal rescue med" that Dr. Jarrar had just prescribed.  I spent literally hours today calling every pharmacy in the valley and speaking with both Aetna and Mercy Care.  FINALLY, after Dr. Jarrar changed the medication to a different nasal rescue med, PCH worked it out.

Today a year ago your father deaccessed your port and forgot to put in the heparin.  (Ironically, it would not really matter, but more on that in a few days).  He worked it out with Nurse Amanda, and eventually reaccessed you and gave you the heparin and deaccessed you again.  I am so sorry for all of our mistakes that resulted in you having more pain.  Your lips were so dry, they were bleeding and cracked.  It didn't make sense, you had been "sick" before (just never actively dying).  By the afternoon the lightbulb clicked in my mind to call the dispatch health service Corrine's mommy always talked about to come and give you a flu swab.  Aba didn't understand why it mattered, me, the type A lady over here NEEDED to know.  I might have lied to the woman on the phone and told her you had every symptom of the flu because when I initially said you didn't have any, she said you wouldn't be given the swab.  I said you were home with aba and maybe things had changed.  I texted Aba and told him what to say when they came.

By 3pm with a lot of fighting between aba and myself, and discussions with hospice Aba said we would be admitting you to hospice.  I relaxed a bit but didn't know what it really meant except that we knew you needed someone to help support our decisions and you in any way possible.  By 4pm the decision was reversed.  I wonder what our social worker thought of today and the next 3 days.  I know you had to be aware of all of the chaos occurring.  I apologize to you about that.  It had NOTHING to do with you...it was aba and I and our disagreement over the same outcome but not being sure how to get the same outcome with our different ways of thinking.  Ultimately, we both just wanted the best for you, whatever it was.

You hadn't peed much today, we started to increase your fluids...that always worked historically.  But, historically, you weren't dying.  Your swelling got worse over time.  I was on sibling duties today, driving everyone to their activities after school.  By 6:30 Aba called to tell me it wasn't the flu.  I remember being in the car, I remember the immediate lightbulb that went off in my mind.  It took me an entire 2 minutes to replay a conversation with Dr. Wendy in my head from when you were a baby and I had asked her, "how would I know if you were swelling and dying"...she said "you would know", "the fluids have nowhere to go and they just flood the body".  I knew what we were dealing with. It wasn't the flu, you weren't sick (but I would continue to go down a list of potential maybes).  

By the time I got home from the last activity, it was around 7:15pm I walked into your room and asked everyone what the dispatch health person said about your rash.  No one understood what rash I was talking about.  It was on your cheeks, your hands, your legs.  It came out of nowhere, obviously between the time Nurse Paige left and the dispatch health people left.  Dr. Kelly crossed off all of my ideas.  We were left with my only option.  You were officially dying.

We went back and forth with hospice multiple times.  It was horrible.  I felt so lost, so alone. I was too afraid to talk about it on the CDKL5 support page because years earlier a similar situation happened and it turned into an awful ordeal.  People don't understand.  In their defense, they just can't until they see it themselves.  I didn't want to be told: "I was giving up".  It was obvious this was not my decision.  This was your body communicating it was tired, it was sick, it was unable to heal, it was shutting down.  Your father couldn't wrap his brain around it.  To be honest, I couldn't either, BUT someone had to be your voice, someone had to respect the situation, plus, I would have forever to deal with my emotions, so while you were here I was determined to just focus on the situation and the facts.

By the end of the night, you still had a fever, you were on oxygen, your heart rate was elevated, you were so very swollen, and I said the words to Dr. Kelly, "I am wondering if this is just her body shutting down".  We would stay the next 2 days at a crossroads between hospice and essentially the land of nothing.  Your father and I didn't talk, really, we hardly even looked at one another.   It was a dark and lonely place to be. It was tense, the house was essentially falling apart.  Your siblings knew you were "sick", they came to your bedside every day.  We didn't tell them anything more than you were "sick" at this point.  It hadn't even been 2 months since Saba died, we couldn't tell them you were dying just yet, especially when aba hadn't come to terms to deal with it either.

I am just sorry there was so much turmoil in the decision, in the air, all around you.  We only ever wanted you to be comfortable and at peace. I am sorry it took us a few more days to sort our emotions out enough to best help you.

Until tomorrow baby girl.

Love always, 
Ema

The Mighty Contributor

Wednesday, January 20, 2021

January 20, 2020

Dear Sonzee, 

Today is one of the more challenging days to recollect.  It is the one that left me feeling in limbo and completely unbalanced on that tightrope I had been walking your entire life.  It felt as if I was walking on a disappearing rope and at any moment I would plummet.  Today was the day that your fever was still present and no specific flu symptoms presented, but instead, nurse Paige began to get concerned over your oxygen levels.  Your poor cheeks were turning a light shade of pink and when I returned from work and checked on you, your eyelids looked like they were getting puffy and you were on oxygen.  You looked exhausted, and you were just sleeping in your bed.

By the nighttime Aba went to play hockey and it was me and savta holding down the fort.  You started to vomit around 9pm.  I panicked...vomiting was no longer a common Sonzee symptom unless your tube was misplaced.  Savta came to the rescue to help me after I literally had to call her over the phone from the other side of the house.  It wasn't just a small amount of mucous either, it was a ridiculous amount of that awesome bile you puked all over Auntie A circa 2016 when we first got you on the NJ tube and those residents learned really quickly that it is best to start really slowly with you.  You were so lethargic, you were so limp when I lifted you up. Your eyes wouldn't/couldn't even stay open. You looked so sick I didn't have the heart to do anything but change your clothing and blankets and wipe you down.  I could tell you were not up for even a quick bath.

I rationalized that it was my fault because I must have given your meds too fast.  I had not even flushed with water because I was so afraid to cause you more discomfort.  For the remainder of the night, I sat in that uncomfortable red Ikea chair next to your bed switching off between working on IEPs and binge-watching the entire show of "Cheer" on Netflix.  Throughout the last two weeks of hospice, I would repetitively ask nurse Paige how on earth she never said a word about how awful that chair was.  I will forever feel awful for not providing something more comfortable for your nurses.

Tomorrow would be the day that I would start to go down the "what if" spiral.  It would be a day where your father and I would start to butt heads over the potential course of action.  It would turn out to be one hell of a day.

Until tomorrow.

Love always, 

Ema

Tuesday, January 19, 2021

January 19, 2020

Dear Sonzee, 

Today, a year ago, the questions began to flood my mind, but overall I wasn't overly alarmed.  There was some confusion within my mind because there were no other symptoms besides a ridiculously high fever that we couldn't get you to break.  We did round the clock fever reducers but your temperature fluctuated between 100-103.6 and you felt frozen.  Mrs. Zupnick asked if your toes were purple, and how blood flow was, I remember you were paler than any other color, but again, nothing overly alarming.  I texted Dr. Kelly, she went down the list of symptoms and I crossed them all off.  We considered starting you on Tamiflu just in case, but we both decided that since you had no other symptoms besides the fever and other viruses were going around, it was best for you to not have another med that was just going to be a crapshoot. 

You were "blah", but honestly so much of the last six months that would have been exactly how I would have described you the majority of the time anyway.  We let you stay in your bed and just rest.  I googled the timeline of flu about 600 times and it wasn't making sense why you only had just a fever on day 2.  Ironically, I was actually feeling relieved that you hadn't started with a runny nose, cough, or any other symptom because I was going to assume that meant it wasn't the flu...but also I didn't exactly consider it to be death.

Your seizures stopped along with the start of your fever, so whatever it was we knew your body considered you sick...regardless if it was just the way your body was handling stress or a real illness. Today you rested...but tomorrow...tomorrow is actually the day that my mind started to wonder...it would still be another 2 days until there was a shift in my thinking...

---

I often wonder what you must have been thinking or truly feeling during your last days.  I know deep down we made the very best choice to keep you home.  I have zero doubts in my mind with the information that would soon follow that everything we did was not only in your best interest but absolutely the right answer.  My heart breaks the same regardless of those facts.  I won't ever be okay with you having to endure all you did.  Still, even as peaceful as we attempted to make your last days of life I wish your ending could have been different...less chaos, less pain, and less confusion (so we could have possibly done better for you).  

Until next time.

Love always, 
Ema



The Mighty Contributor