Monday, March 30, 2020

Navigating

Dear Sonzee,

In a few more hours it will be 8 weeks since you were last here.  Didn't I just tell you it was 7?  I cannot believe Friday marks a full 2 months, it will also mark Ema's bestie Elle's birthday, so that will allow the clouds to part a bit.  The tears still fall at the drop of a hat, the pain still feels just as fresh, and the weight on my chest feels just as heavy.  Yesterday we had a really nice family day, the 6 of us, it almost feels wrong to admit that to you.  I promise though all I did was think about where you would have laid in the grass with your siblings, and how I would have made you go on the slip and slide with me; although you would have hated the cold water.  Noam would have sat with you since he refused to go on it because boss baby agrees with you on the water needing to be growing bacteria to get near it.  We all went into your swim spa to warm up, someone (yet of course none of your siblings will admit who) made it 91, don't worry, we adjusted that quickly back up to 94, we all know how you like it.

The last two times I have gone to see you there have been rocks painted and left for you.  I love the surprise, and even better is after I make a post the person sends me a text to let me know who it was.  I cannot tell you how much joy it all brings to my heart but it also hurts me to know others are having to miss you as well.  In case you don't know, missing you really hurts.  I don't wonder if it will ever feel better, I know that it would be impossible.  You have left quite a void for so many, I hope you realize how special you were, are, to a lot of people.  Meena slept in your room on Saturday night, Laeya Sunday, and Tzviki has requested tonight.  The only bit of guilt I feel in regards to him and your last few days is that he asked to sleep with you and I told him "not tonight" and then it never happened; he has reminded me of this at least two times since you left us.  I am so sorry if you are upset about that as well, I should have just let him, I don't know why I didn't; but tonight and whenever else he asks me to, he will be there.

I gave Auntie A all of your clothing, it wasn't that difficult because 95% was from your sisters, and it always goes to Ziva after you.  She has insisted on wearing the outfits practically every day, it makes me smile when she walks by the house in a familiar combo.  She and momo were talking about you the other day and Auntie A sent me the recording of the last part.  I know Ziva has been missing you a lot, and she was talking about you.  Mo said you will always hear them talking to you because you are in the sky and you were with Hashem.  Neither Auntie A nor I realized how much your absence would impact Z, so maybe if you could add her into your watch list if you haven't that would be so great.

Last week I took another picture at your grave and received a text from Coach Susan pointing out another heart crept it's way into it, this time the shadow was the heart.  I am starting to really think you are somehow doing this on purpose.  I think I am too afraid to admit that it really could be a sign from you, but after the third time, I promise I will stop doubting (hint, hint).  While we are on the subject, if you could just find a way to let me know you are doing okay, ema could really use the reassurance.  It has been really challenging to not be able to check-in, to not be able to call and have someone tell me you are doing well, to not know you are feeling ok, to not know you really are alright, to not know you have made friends, or that someone is taking care of you, or at least is there for you when you need it.

Navigating life with you feels similar to being dropped into the middle of a jungle in the fog with no compass.  I think the busy work of being back to writing progress reports, IEP's, and present levels has helped me keep my footing, but it is easy for me to falter when I see the dates of birth of the kiddos in my classes are younger than you or your age.  The days are starting to have more moments where the tears don't force me into hiding or make me turn away so no one catches the twinkle is there.  But then there are times where a simple thought brings a tidal wave right back at me. I know this is going to be an even slower marathon than living your journey with CDKL5, so I am learning to give myself grace.  I just hope and pray you are not having the same difficulties navigating your new world without us, and if you find yourself having one of those tough days just know it's allowed.  Remember that we miss you beyond words and to stay safe.

Love always,
Ema


The Mighty Contributor

Thursday, March 26, 2020

Painting rocks

Over the last two days, I have spent 3 hours coloring rocks.  Saying that makes my eyes squint and my eyebrows furrow, coloring rocks?  I don't understand how 3 months ago I was measuring out medications and matching bows to her outfits and now I find myself sitting on a sidewalk with my legs stretched out onto a surface of rocks while my hand reaches for different acrylic markers to use to color large rocks that bring life to her place of death. 

There is typically the perfect breeze that meets me shortly after I arrive, or maybe it just takes me a little while to notice it is around me.  I wonder if there is a notification system that lets her know she has a visitor.  I sometimes wonder if the wind is a greeting from her letting me know she knows I am there.   I wonder if she has the option to sit with me while I am there, and if she has the option, I wonder if she does?  If she knows, I wonder if it brings her comfort that I visit as often as I do, or does she wish I wouldn't?  Funny how I still second guess my parenting of her, I guess some things just won't ever change.

The main thought that fills my mind while I color her rocks is, "how is this my reality?"  It is almost some horrible irony that after close to 5 years of my parenting of her requiring me a tremendous amount of thought to ensure she remained alive, my responsibility has now been diminished to a completely mindless activity such as coloring.  As if it is intended to be some trade-off or some reward, but instead it just feels like my own personal form of capital punishment.  I am not supposed to be sitting in a cemetery coloring large rocks because I don't like them being stuck in a basket.  I am not supposed to be repurposing a room that was specifically constructed solely for her.  I am not supposed to be thinking about how our quarantine would be looking right now had she been alive.  I am not supposed to be sitting in a cemetery because my four-year-old daughter died almost 2 months ago. 

Instead of even entertaining that time might help, I just feel like every day becomes harder.  Every day is another one that she wasn't here for.  Every day is another one that makes her actual loss that much further away.  Every day makes it the new longest since she has been here.  Every day just makes me miss her differently, miss her more, and miss her a new too much.  I don't wish we should go back to her enduring all she had to, but I do wish I could do more for her than just painting rocks.

The Mighty Contributor

Monday, March 23, 2020

7 weeks

Dear Sonzee,

It seems on my more difficult days writing you a note helps clear my mind.  Today has been tough.  It started with an online staff meeting at your school.  I have been unsure about going back to FBC this year, unsure if I was ready but wondering if I would ever really be ready, and not wanting to disappoint families or the teachers in my classrooms.  Schools have moved to an online virtual format due to the coronavirus pandemic, so I no longer have to worry about walking passed your classroom or going into a building that would possibly cause me an extra dose of grief.  I figured West Valley wouldn’t bother me as much since you never were there physically, so initially I thought I would just go back there, but now I am planning on going back to all four classrooms.  What I didn’t consider was that just getting back into the grove, being part of a community that was yours first would make me so emotional.  Let’s just say I was really happy it was a one way meeting and no one could see me.  All I was thinking about was how sassy you would be during the future virtual circle times and the avoidance you would do to not look at the screen.  I wonder what you would have thought about it.

I cleaned the filters in your swim spa this afternoon.  I am in operation make the water sparkling blue.  It has been quite the project for me.  Every  time I think I finally have it mastered, it becomes a bit cloudy and it’s driving me insane.  I ordered new filters  and before summer we will drain the water and refill it to start from scratch.  Overall I enjoy taking care of it, I just wish you would be swimming in it along with the rest of us.  I keep telling myself I should start to swim against the jets as a workout and put all of the features to good use, but you know how I feel about exercising so it still hasn’t happened yet.

We received another series of trees planted in your honor certificate today in the mail.  That brings the total up to five certificates and a ridiculous amount of trees.  This one came from Mr. Darrin and the entire cemetery family. That made me smile but brought tears to my eyes simultaneously, that seems to be the common theme today.  Last week we finally received coach Susan’s, it took her calling three times and 5 weeks for them to get it to us...neither of us understood why that was the case.  Aunt Ronit,  your CDKL5 brother Tanner’s family, and a huge group of my sorority sisters sent as well.  I’ll make sure I put the one from today up with the others on the wall.

The last part of your room is just framing some final items.  Aba has officially moved the corner desk inside and he’s been using it for the last few days.  It’s nice to be using your room daily again.  Laeya went in there over the weekend and played with her playmobile.  Noam is back to asking “up” when I am in there to get into your bed.  Meena tried to erase the dry erase marker with all of your last doses of medications given the weekend you passed away, Aba and I shouted “don’t touch” in unison, clearly we aren’t ready to remove the last bit of our care for you.  Your TPN lists are still up on the left door, and your last doctors appointment dates are listed as well.  They might end up being stained into the door.

Today marks 7 weeks since I last held you.  Still feels like it was yesterday, but I know so much time has passed without you.  So many new memories that don’t involve you physically, but don’t worry, you are there in all of our thoughts.  We miss you immensely and we can’t wait to see you again.  I am eager to hear about all you have been doing, so I hope you are keeping a detailed journal to review with me one day.  It’s been an hour since the gates closed here, and I am sure Aba is wondering when I’ll be back, so I am going to be on my way. Your  rocks are all in order and I’ll be back to sit with you tomorrow. Have a great night and be safe.

Love always,
Ema

Friday, March 20, 2020

Blankets

We are coming to the end of our first week at home.  There have been minimal time commitments leaving me a large amount of time to finish Sonzee's room.  This morning I was cleaning off the remaining items that have been thrown on her bed as the rest of her room is straightened up.  I am in search of one specific item I know I have hidden somewhere so I can frame it, but I have no idea where it has been placed for the last almost 5 years.  I went into her brother's closet which has been the main storage facility for many of the kids' items because it is the only walk-in closet in our house.  I reached for a large green Ikea bin sure that it was full of cards and papers related to Sonzee, but as soon as my eyes caught the contents I realized I was right about only one thing, it was a box for Sonzee.

Blankets.  I saved her blankets in this bin when she was no longer a baby.  After she turned three and started school I exchanged the blankets she would take out in public.  I essentially forgot about the blankets and that I put them in this box.  I have looked at so many baby pictures recently with these blankets and maybe one time did it even dawn on me I had not seen them in a while.  It clearly wasn't too much of a thought for me as I didn't go on a rampage to find them, but now, here they are unexpectedly in my face.  The baby blanket with her birth statistics that my sister made for her, ironically with lime green thread.  The Sonzee/Sonya bear blanket that an online Facebook shop sent to children who spent time in the hospital.  Her first NICU blankets.  The blanket the International Foundation for CDKL5 sent me when she was first diagnosed, which reminded me that it was also sent with the Raggy Ann doll that has been in her room that I couldn't remember who had given it to her. The small lovie blanket we grabbed from the volunteer cart during one of her PCH stays because it was red.  All of these blankets that were such a significant part of her early years and now they will be a significant part of my future.

I am still adjusting to how things continuously sneak up on me.  I am still caught off guard with these moments that feel like a fresh stab wound.  I am still shocked that it isn't until these types of moments that I realize I am blocking so many emotions.  I am still surprised at how much it hurts that she isn't here.  I am still overwhelmed by the thought that she won't ever be back with us here.  I am still having difficulty with the fact that I justify that losing her was better for her because of the struggling she did while she was alive.  I still don't understand how that makes sense.  I still cannot comprehend that she had to spend 4 years 11 months and 22 days locked inside her body only for her freedom to come by leaving earth.  But, besides all of that, what I find almost poetic is that baby blankets that were used for her comfort are the items that brought me to tears.

The Mighty Contributor

Tuesday, March 17, 2020

Owls

Dear Sonzee,

I am sitting here with you amongst this time of social distancing, while I don’t think you could be any further from me, this is the closest I can get. I keep seeing all of your friends' parents changing their Facebook profile badge to the one that says “Your only is my everything” and ironically it pains me that I cannot do that.  I wonder what I would have said to myself 5 years ago today when you had your first EEG had I known where I would find myself today.

A week and a half ago I saw an owl in the tree across the way from you. I took so many videos and pictures because I have never seen an owl in real life in a tree so close, I also was not sure aba would believe me if I just told him about it. There happened to be a funeral going on at the time and I wondered if this person had any relationship to owls.  Minus an owl dress and a pair of pajamas we never really coined you an owl girl.  I went home and while working on your room, I came across a picture that Laeya made for you.  I am unsure when she drew it, but there is a bird saying feel better to two owls sitting on a branch in a tree. I hung it on the wall yesterday. Today while I have been sitting here with you, Mr. owl has been hooting away.


I keep wishing you were here but at the same time I am so thankful we don’t have to worry about you being taken away from us because of a virus. That was always my worst fear. No matter what we did to try and protect you it was never enough, you always managed to get everyone’s “allergies” anyway. I couldn’t help myself and I signed into the PCH portal last night to look up your previous positive respiratory viruses. You were the queen of adenovirus/rhinovirus and you even had the HCoV-OC43 coronavirus. My heart sank to see all of your future appointments removed but I am so thankful someone took care of that for me and that no one made me have to call every office to cancel them; doing that for your feeding pump was horrible enough.

We started a grief support group last week. Sadly it has been put on hold due to social distancing, but your siblings after essentially having to force them to go are begging to go back.  It makes it worse they aren't having it right now, but I am so happy they enjoyed it.  Of course, they were each given another beanie baby and a blanket (because we don't have enough of those) but that definitely made them smile. I was hesitant to take another blanket myself, but sometimes it gets windy and chilly when I sit with you and I have already gotten to use it.  Meena and Laeya have been more openly vocal about them missing you since that first meeting. They say how much they just miss having you around. Noam has started to make it a routine now to request the book of you and him at nap time and bedtime. Tzviki is still keeping to himself, but he did share his favorite time with you was that last week when you two snuggled and told stories, I am so glad I recorded the entire event.

I am not sure if you have viewed your space from above, but after each storm, the dirt and rocks sink in.  I have been there every time and each time it manages to get worse.  The guys at the cemetery have been amazing fixing it within 24 hours, but sometimes I am quicker to visit than they are to get it back up to snuff.  Apparently tomorrow it is supposed to rain really hard all day, so Mr. Ira came out to warn me that he will have it fixed as soon as the weather permits, thankfully everyone continues to make sure they take care of you.  

I was warned that no matter what happened when you were dying that I would find myself reconsidering every decision.  I was cocky at the time so confident in our choices that I couldn't imagine that would ever be the case.  It is amazing what 6 weeks and your absence can do to my mind.  I still know we had no control over what happened, but at times my mind wanders to that land of what if.  Thankfully I have people who entertain, accept, and support my wandering but also steer me back on the path making sure I really know that we did the best for you.  It is just hard, life without you little bear is just hard.  Every little thing depending on the day is just hard, so I am trying to just focus on a day at a time.

I hope you have had an amazing 6 weeks and have made all sorts of new friends.  Hopefully, you don't have to worry about social distancing wherever you are and your days are filled with tons of swimming, eating, and whatever else it is your heart desires.  Know that we are all still surviving without you despite our broken hearts, and we all look forward to seeing you and hugging you again.

With love always,

Ema

The Mighty Contributor

Monday, March 16, 2020

"Dondee"

Every night when Sonzee's little brother goes to sleep he requests to read his favorite book, or two, or sometimes three.  They are usually the "poo-poo" book (Old McNoah), "Never touch a dragon", or "10 tiny racers".  He will dictate where we are going to sit in his room.  It used to be us snuggling in his rocking chair, but now it has turned into us squeezing onto his bean bag or him in his little rocking chair and me on the floor.  After we presented him with his "Sonzee and I" book the other day we would ask him if he wanted to read it after his first book at night, both Sam and I have read it one or two times, but it has not been a book of choice.  So last night with his first book choice in my hand, and his milk bottle in his, we begin our normal routine. 

We both alternate singing the words to "Old McNoah built an ark", with the slight adaptation of "McNoam", because it sounds cuter to use his name.  He brings "two tows" and they "moo-moo heee and moo moo da".  Then he gets "two ducks" and they quack (although I won't lie, he totally substitutes an "f" for the first "q").  The book goes on to discuss pigs who go "oinkee", and lunch being served that turns into it becoming quite smelly (hence "poo-poo" book).  The rain starts to fall, the ark goes "oopsie daisy" and then dry land is spotted, "ya-hoo", and of course "e-i-e-i-o".  The book finishes and little brother pops up and walks towards the middle of his room.  I plead with him to come back for another book, he says "Dondee!", I am not sure what he is saying exactly.  He reaches up on the dresser, "Dondee!".  Then he grabs the book.  "Oh...you want the book of you and Sonzee"

"Dondee Book".

So he brings it back to sit down and we begin to read.  I have read this book to him already, I wrote the book, it has only brought a huge smile to my face, except last night when it became requested book #2.  Fighting back the tears he let me read every word not rushing to turn the pages.  He had me read it a second time pointing at her picture every time while I said "Sonzee" and then pointing at his picture while saying "Noam".  It is always a moment like this that catches my breath, one that makes me smile with such joy and happiness, yet simultaneously breaks my heart.  It is one thing to have to sift through my emotions and the pain of her loss, but to know her baby brother aches for her is just such an addition of pain to this already horrible process.  I am so thankful this book will give him (some of) the comfort he clearly needs, but I wish so much that he could just walk into her room or see her in her PPOD and say "Dondee" with the same excitement he does when he sees her picture in his book, like he always did.
The Mighty Contributor

Friday, March 13, 2020

Weird place

My newsfeed is full of memes, alerts, and pretty much all things coronavirus.   Occasionally I hit the "love" or "like" button when I see the memes comparing this outbreak to that of life with living with a medically complex child or the jokes about people buying out hand sanitizer and toilet paper.  Occasionally I get infuriated (like I have for the last 5 years) when I see news reports of disrespectful and selfish people who exhibit symptoms of an illness (despite that the main advice is to stay out of public if you have any potential symptoms) are testing positive after they have exposed thousands of other people to what turned out to be coronavirus by going out in public.  Occasionally my heart sinks when I read the posts from special needs families about how these new rules are just how those of us living with someone who is medically complex spend our lives because despite the routine, despite the familiarity of this panic, I don't have a reason to be part of it anymore.

I find myself in this weird place.  I feel like I am a stranger looking into a window of a home that once was mine, one that was so scary to live in, one that brought me to tears and ultimately heartache, but one that is familiar, brings me comfort, and has left me unable to fully move away from.  I don't have a reason to be fearful of my kids being around others who have a sniffle, but my reaction is to cringe and think negative thoughts about the parent who says "it's only allergies".  They have no idea what "those allergies" could have done to our family.  They aren't aware that there is a nose swab that can identify those sniffles and those "allergies" in 1 hour, and it doesn't matter to them that their child's "allergies" have a name.

These precautions are simply a way of life for a rare but fierce community that has lived with the fear and anxiety that so many are filled with now.  I feel sort of slighted that no one cared before.  I feel like screaming at every person running to the store buying hand sanitizer, toilet paper, soap, and every Lysol product on the shelves.  I feel so angry that the world as a whole doesn't really have any empathy for those who are most vulnerable.  What makes me even more livid are those who are STILL going out into the public with symptoms, despite the warnings.  I cannot comprehend how people have to be told to stay home when they have any symptoms.  I cannot comprehend how people are so selfish that they feel whatever reason brings them out into the public weighs more than someone's life.

Besides my fear for all of Sonzee's friends and their families, I don't have a reason to panic, but old habits die hard and tonight my heart simply hurts for those of us who have our own personal amazon locker of supplies because that was how we help to keep our children alive.  It hurts because it took a mass population to be effected for societal rules (of common sense) to be implemented.  It hurts because our family doesn't count anymore in a category that I most relate to and understand.  It hurts because I am fearful of another parent joining this horrible club due to ignorance and heartlessness. 

There is a sad sense of relief that I am no longer part of a community that requires me to personally panic, but I won't ever be able to stop advocating for common sense and for all of the family I have gained because of Sonzee.  So I beg of you, stop buying hand sanitizer, stop buying toilet paper, stop buying every disinfectant agent out there, just stop.  Long after the immediate fear and quarantine of COVID-19 has dissipated there will still be other respiratory viruses such as THE FLU, CORONAVIRUS, RHINOVIRUS, RSV, PIV1, PIV2, PIV3, ENTEROVIRUS, and ADENOVIRUS.  Odds are the majority of you never considered most of those listed above are the names for "allergies".  So, when the world returns to normal, when schools reopen and when gathers reconvene, what I implore of everyone is to simply remember the panic you feel today.  Please always remember there are families who feel this sense of panic and anxiety every day and reconsider your initial desire to leave your house with your "allergies".  




The Mighty Contributor

Wednesday, March 11, 2020

Should have

Yesterday was a really tough day.  It was one of those days where everything just compounds on top of one thing after another and you are left to sitting on your couch watching a movie from 2008 on Netflix drinking a store-bought mocha frappuccino your daughter brought home for you, after having received random texts from people throughout the day feeling the urge to check-in, and then someone randomly shows up at your door with an alcoholic beverage and to talk as if it was all organized from beyond to say, "you are not alone, we got you, we are here".  To be honest, the support is amazing, the support is definitely warranted, but the fact that it is needed is just so challenging for me to have to accept.  I think I cried more yesterday than I have in the past 5 weeks, I guess it was needed, I just wish when the tears stopped so would all the pain and thoughts so that the tears wouldn't have to start back up again.  I know that won't be the case, I cannot shake the thoughts so I might as well, for now, tolerate the tears.

One of the seven stages of grief happens to involve pain and guilt.  Apparently, it's part of the normal process and occurs as the shock wears off.  I wish I could have seen it coming, maybe I should have done a quick google search to prepare myself, but instead, I spent the day feeling such an immense amount of guilt, that google was unnecessary.  Whether it be rational or not, it doesn't change that I cannot push the thoughts away.  I feel like a complete failure over the fact that my parenting clearly was not good enough to keep Sonzee alive, and in addition, her siblings suffered without having as active of a mom as I wish I could have been for close to 5 years because I was the primary parent for Sonzee's needs.  So in the end, Sonzee died and I failed them and missed out on so much and for what? 

Everything with her health required my advocacy, I wish I had been a better advocate?  I should have demanded we take her off TPN when I was unsettled in August.  I should have been as adamant as I was about her entering into hospice for her last days all those other times I felt that I needed to humor everyone else.  I shouldn't have allowed her to be subjected to every potential remedy that I knew would result in nothing beneficial and just said "No!" That was my job!  I am the one who knew her best!  I am the one who knew when she started to decline.  I am the one who listened to what she wasn't saying...but I wasn't the one who was able to save her.  I cannot figure out how to balance "what I did do for her" with what I ultimately couldn't do for her.  Anything positive seems so insignificant and meaningless compared to the fact that she is gone, forever, and whatever I might have been able to do is no longer a matter of discussion.  I should have been able to do more. 


The Mighty Contributor 

Monday, March 9, 2020

Feel the grief

"Try to accept where you are at.  Feel the grief instead of fighting against it."
The above are words written on a page in one of my child loss grief books; my eyes swell with tears every time I read them and my heart tells me it's solid advice, but for some reason, my brain is too stubborn to even consider their suggestion.  These words echo the same advice that was shared by a holocaust survivor I recently attended a lecture of, I know I should be following them.  Yet, I have had similar difficulties over the last 5 years accepting where I was at with her CDKL5 diagnosis, so I can only imagine how this whole acceptance of my current state of grief or really of her not being here is going to unfold.

I have been having difficulty accepting anything about what occurred 5 weeks ago; especially that it has been five entire weeks, that it has been more than a month, that it has been around 50,400 minutes, really that any amount of time has gone by in general.  I know she is not in her room, I know she is not in our house, I know she is not at an extended stay at the Ryan House, I know she is not here on this earth, I know exactly where her body is located yet I cannot allow myself to actually process that.  It is significantly easier for me to remain in this land of denial and not accept any of it, versus feeling all the feelings that any level of acceptance would bring.  I am sent into an immediate state of panic if I even consider feeling, and the pain is just too much to bear as it is when any amount of tears fall from my eyes.  I cannot possibly justify feeling any more of this.

I allow myself to feel grief in moments, in small doses, in an almost tangible amount, but anything more than split seconds of acknowledgment is just more than I can even consider.  Maybe where I am at is "fighting against it" and at this current moment that is just where I am going to need to remain to continue to be a functioning member of society.  Maybe in a sense, I am actually accepting where I am at, that I am unable to fully feel the reality of grief.  I guess, for now, that is going to have to be my attempt at trying because I am just not ready to feel any more grief. From where I am sitting, "fighting against it" is actually a whole lot easier than feeling, and to be honest I am not sure if either way is right.


The Mighty Contributor

Wednesday, March 4, 2020

End of Shloshim

Dear Sonzee,

Today is the end of Shloshim.  My world supposedly is returning to normal tomorrow.  All the restrictions for the past 30 days will be lifted and life will partly go back to how it always has been and yet will never ever be the same.  Tonight we are having a celebration for you.  I went last night to put out 22 tables, and as I was putting chairs around table 19 I started to cry.  It had nothing to do with the tables or the room and everything to do with the reason behind the setup.  22 tables should be in a room to celebrate your Bat-Mitzvah or your wedding.  22 tables should be in a room to celebrate the birth of your first daughter at kiddush or your first son's bris.  22 tables should be in a room to celebrate anything but the fact that you lived for 4 years 11 months and 22 days.

The 22 tables, as well as the room, will be decorated in your favorite color red, black because we always used it to help you with your vision, and grey/silver because it sparkles and compliments the red and black well.  Auntie A and I made a glitter banner for your candy area that we totally could have bought off of Etsy, but it was so much fun to use her Cricut machine, and it only took 3 hours of our day.  I should mention it was fun to do, turned out great, is so sparkly, and amazing and it looks store-bought.  We have tons of red, black, and silver candy sitting in the house.  Noam keeps walking around saying "Dondee Tandy".  He was so excited over the dum-dums that arrived last night after I panicked over not being sure we had enough candy for the number of people attending, and he kept shouting "law-wee, law-wee...Dondee tandy".

I threatened your siblings with not staying the entire time tonight because they cannot seem to get their act straight lately and get to sleep on time.  I am sure you would be rolling your eyes at their shenanigans these days.  Laeya wrote a song and will be singing it for you tonight, she even invited Meena to sing two lines with her, it makes my heart burst that she did that, but I know she wishes you could be singing with her.  It is a really sweet song, I hope you can hear her sing it; don't worry, she has been working with Mrs. Kasiah for voice lessons and really doesn't sound too bad.  We also have a couple of slide shows, and honestly, it was really challenging limiting what pictures we used even though it was less than 5 years that you were here with us.  You really did have a jammed packed life and I am so grateful I have so many pictures and videos to help keep the memories alive.

We are doing a mitzvah project that involves asking everyone to take on a new mitzvah in your honor.  We will have books at your celebration that represent different "chapters" that each person can write their name in and we will then put them together to be part of one book of mitzvahs.  We are also working on something at Chabad to give the boys tzitzit and a kippah when they turn three and girls their first candle to light for Shabbas, but we have not finetuned the details just yet.  We have one more special surprise we are working on, but it isn't finalized yet and I want to tell you it when it is solidified, I think it will make you extremely happy though.

I don't know if you know I have gone to visit you every day except Shabbas since shiva ended.  You have quite the collection of rocks and your room looks really nice and kept.  After the rain last week they had to fill in the front by the sidewalk, but they did it within 24 hours.  I have now spent many collective hours chatting with Ms. Wendy, Mr. Ray, and Mr. Darren.  The grounds staff is there all the time as well, and I often wonder how they have so much to do, but at the same time, you have gained quite a few neighbors over the last few weeks, so that has kept them pretty busy.  Tzviki, Meena, Laeya, and I took a walk on Sunday through the entire cemetery reading the headstones and giving our opinions on the prettiest colors and neatest looking ones.  We are all excited for yours to be up, but we still haven't figured out what we are writing on all of your pieces.  I am sure it will eventually come to me, and since we have time, I am not worried.   

I switched out your closet cabinet with the Ikea unit in the playroom so Noam stops spilling out all the board games.  It is working like a charm so far, but it has only been 2 days.  You have so many items that can now be on display that the Ikea unit is a much better fit anyway.  I still have so many items to hang and so much to do for your room to be complete, I am sorry it is taking so long.  I have been keeping myself busy preparing for tonight that I am a bit scared about what is going to happen tomorrow.  I am thinking about going back to work, but I am so nervous at the same time.  I am just still having a tough time figuring out this whole living life part without you here.  It still doesn't make sense, it is still weird, it is still wrong.

While I could continue to write you a novel with everything I want to tell you I am sure you have other things to occupy your time. So, if I could make a request, I would love for you to come over to Chabad tonight between 5-8 because you have literally hundreds of people who are coming to celebrate your life and I want you to see just how truly loved you are and always will be.

With love always, 
Ema


The Mighty Contributor

Monday, March 2, 2020

4 weeks

Today marks 4 weeks since I last held Sonzee, since I last gave her a kiss on her soft little cheek, since I last picked her up for the last time, since I last walked her outside the house for the last time, since I placed her on a stretcher, made sure she was buckled for the car ride and made sure she had two blankets because it was cold that Monday afternoon.  As soon as I made sure she was safe, I turned back around and walked quickly back into the house but didn't know what to do.  I couldn't look at anyone, I couldn't talk, I knew either would result in me breaking down, so I think I just walked around the kitchen putting things away and keeping my mind and myself busy. 

It was only 9 days prior that we had formally admitted Sonzee onto hospice, which was after 4 days of uncertainty between Sam and me.  It was 18 days after her very first symptom began, and 15 days after I realized what was really going on.  No matter how much time passes I think every moment leading up to her final breath will be replayed in my mind.  No matter how much I know there was nothing we could do for her, no matter that I honestly have no regrets over how we spent her last weeks, it is still really hard to accept there really was nothing we could do to change her outcome. Sam and I both have spoken to numerous medical professionals and we know that she was not sick with an infection.  We know there were no antibiotics to give.  We know there was no way to stop or reverse that her organs were shutting down just because. 

Now 4 weeks later,  while I accept that her body was exhausted and that it was her time, and she put up one hell of a battle for 4 years 11 months and 22 days, I still wonder what if we could have somehow known or prevented the domino effect that occurred in her body, as each organ started to malfunction?  What if we had been more or less aggressive with seizure control?  What if we had chosen different formulas or diets over her life.  What if we had made one small or seemingly insignificant decision that would have changed the outcome?  I know the what-if game does no good to play. I do know we did make the best choices for her based on the information we were presented with each and every time.  But it will always come back to what if something could have been done to prevent her CDKL5 mutation in the first place, what if we never even knew such a game of life even existed. What if we had from the start had a perfectly healthy, smiley, and happy Sonzee....what if?

The Mighty Contributor

Sonzee's Slideshow