Sunday, February 28, 2021

Rare Disease Day 2021....CDKL5 is....

For the last couple of weeks or so I have watched my newsfeed transform into this advertisement for rare disease day.  I suppose that is my fault for having the majority of my friends from the world of rare.  Maybe that in itself isn't the fault, maybe the fault is that I haven't snoozed them? It has been a day on the calendar I have always felt conflicted over since 2016, never sure whether it was a day to celebrate or berate.  The purpose I suppose is to have a day to give recognition to all of the rare that is a part of the world. Another day to raise awareness over various disorders that might not have the recognition that is needed to find cures or monetary assistance to conduct research.  For many families, it is a way to bring to light that despite the struggles that their children or family member face daily they are strong, they have prevailed, and yada yada yada.  However, for me, a year and 25 days after I had to bury my rare, I feel like it is just another day to slap me in the face.

This year specifically the CDKL5 community in America decided to post pictures of their kiddos with signs that say "CDKL5 is..."  The first word that came to my mind to complete that phrase, "CDKL5 is death".  Probably not the cute # that the community was or is going for, but the truth and reality for SO many nonetheless.  I didn't bother to submit my picture of Sonzee's gravesite or of a picture of her from when she was actually alive holding a piece of paper that was photoshopped.  I am fairly certain it wouldn't have been shared, you know since it could be too depressing, or possibly make others afraid.  You know, as if pretending makes the harsh reality somehow not exist?  Or as if not talking about the reality of rare and the potential of life after rare makes it so other families don't join this dark side of rare!

I understand better than anyone how challenging it can be to have the fear of death hanging over your shoulder when it's your child who is still living and breathing with the same rare that took away Sonzee.  I understand that maybe posting #brave or # some other positive word is just a way to try to focus on the bright side, to try and remove the haunting bad Joo Joo that hangs over your head every day.  Or maybe, parents really do think that what happened to Sonzee is the rare of CDKL5.  Maybe they aren't ready to acknowledge that CDKL5 can actually be the sole cause of death.  But, today on February 28, 2021, when everyone is doing their best to get the word out about rare, just remember, to many, CDKL5 and other rare diseases are #death.     


The Mighty Contributor

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