Monday, July 6, 2020

22 weeks

Dear Sonzee,

It's been another week down, and an eternity of them to go.  This last week was a pretty rough one, I am sure you could gather as much from my letters.  It was the first week I broke down in the kitchen and your siblings were excitedly telling one another "Ema is crying".  We can blame it on aba because he saw me struggling to hold on to the invisible thread and he got up to give me a hug and that was all it took for me to completely lose it.  I know it is okay for them to see me fall apart every once and a while, but I really dislike any time it happens. 

The one good thing about time passing by is that aba and I are discussing things related to our grief a little bit more, and it appears for once we might actually be on the same page.  In all honesty, it doesn't really help all that much.  All the pages suck.  They all involve some sort of attempt at trying to justify that you are in a better place while soaking up all the amazing moments with your siblings and yet ultimately fighting the incredible pain of missing you all at once.  It's another tough picture to paint adequately.  It's something no one should have to fathom much less endure, and anyone who gets it sadly is living it.

Your entire life was such a struggle for you, you faced so many challenges and you were in some amount of pain probably close to always.  It isn't a life that we would have chosen for you, nor is it one we would wish upon any person.  Yet it was the life we came to know and learn to live with and some days you even put on a smile.  It was so hard for us to watch you go through everything you had to, and I don't believe those who would try to tell me you didn't know any different. I am sure you were exhausted seizing all the time, not being able to eat by mouth, and not being able to tell us about anything you wanted.  I can only imagine the amazing things you are up to now that you are finally free.  I am sure my heart would be beaming if I could sneak a peek through some tiny window into your new world.  This hope of you being the 5-year-old you never could have been here, is what aba and I remind ourselves is what is for the best.   It's our only consolation prize.

Laeya told us over the weekend that you have come to visit her a couple of times.  She said you are "a complete girly girl".  I asked her if your hair was done, and she said "it's always up in the cute pigtails with the bows like nurse Paige gave you".  She said your voice sounds like a mixture of Noam's and Meena's...I wish I could hear it because I cannot really hear it in my mind.  She said you have been hanging around with saba and that you and Harper have had some playdates.  She said she knows you have at least one other friend, but she can't remember if you told her the name or if she just forgot, but you were going to see her later on that day.  I am glad she sees you in her dreams because I know how hard your absence has been for her. 

As always I hope you are staying safe and know how much you are missed and loved.  Until next week.

Love always,

The Mighty Contributor

Friday, July 3, 2020

5 Months

Dear Sonzee,

Today marks not one, not two, not three, not four, but 5 official months since we last cuddled.  As usual, writing that first sentence brings tears to the forefront of my eyes and a huge lump into my throat.  This month has brought about some changes in this whole grieving journey, I wonder if you noticed them yourself?  I think some might call it growth, from my perspective, and for me, it is honestly just a significant amount of sorrow that I didn't know could even be added to the experience.  If I take a step back and focus on you than I can see the whole potential growth concept.  I hope my actions will further allow you to move forward in your journey.  Don't get overly excited, because you didn't turn 18 yet, so my freedom for you is only being given in tiny tiny increments.

Man, this parenting thing has gotten really complicated these past 5 months.  I am so confused about where I stand as your mom and what that actually means.  I have no idea what any of my actions mean for you.  I have no idea if anything I do even impacts you at all.  Do you hear my thoughts or are you able to read my words?  If you can and do, I wonder if these letters to you make you feel guilty at all or keep you from doing anything out of fear of breaking my heart more?  I pray that isn't the case, but at the same time, I won't ever be able to let you go enough to stop them.  My only hope is that eventually, we can both find a balance respective to each of our new lives.

During this last month, your siblings all finished the school year.  They have yet to finish the workbooks I got them for supplemental work back in March, but maybe by your 6th-month post, they will have completed them.  Noam has started to bring everything plus the kitchen sink into his crib at night to go to sleep.  Your book has been a staple there as well.  He is really into Llama Llama lately but still gives some time to the Pete the Cat books.  He is talking up a storm and still picking on Meena, which is honestly just so funny (although, not so much for her), but we really cannot figure out why he goes after her.  Maybe it is because she is so chill it makes her quite the easy target?!

Tzviki and Noam are becoming pretty close pals.  It has been really neat to watch their relationship unfold.  It is filled with hockey sticks, wrestling, ball throwing, and just random shenanigans that are really not safe.  Tzvi and the girls have been spending a lot of time building lego communities and when it's cooler in the evening will go ride bikes or scooters out front.  Tzvi would play hockey all day out in the heat, but I am just not up for that during the 100+ temperatures.  He has still been pretty quiet about you being gone, but he is a sensitive little guy, so I know he is internalizing it all.

Laeya and Meena have continued including you in their games with the Sonzee Bears.  They are both getting on me to get the books made of you and each of them, I have Laeya's in the shopping cart and just need to buy it, Meena's I need to start.  Everyone has been helping with their plants, but it is really not going so great.  The milkweeds are doing fabulous, but we have lost all the flower buds on the Kangaroo Paws.  I am attempting to get new ones to grow.  The stems are still tall and not droopy, so I know they are alive...they just aren't as easy as was suggested.

I hope this last month has brought you new happy times and positive lessons.  I hope you are continuing to make friends and that you are meeting nice people.  I hope you have explored more of wherever you are and spend your days doing whatever it is that makes you happy.

You are missed and loved immensely and I find it hard to believe the next monthly letter I will write will be in honor of half of a year without you being here.  I think it is going to take the next month to process that fact alone.  Until then my little bear. 

Love always,

The Mighty Contributor

Wednesday, July 1, 2020

Another month

Today is day #1 of July 2020.  This changing of the month didn't seem to come at me as quickly as others.  Maybe I was more prepared? Maybe I am just getting used to it?  Maybe I just feel removed from the concept of time?  I can't figure it out, and honestly, I don't know if I even care to try.  I will just accept it for what it is.  Another 30 days has passed, and another 31 to go until I am right back into this cycle of having lived another month without her here.  On Friday she will be given her 5-month glow in the dark rock, just another tangible reminder.

This July is going to be so different than how we have spent July's in years past.  I suppose it is how it is supposed to be, but I am not an incredible fan of all of this change.  There has already been so much unpredictability with this entire year and every moment since February 3, so I am really hoping for some peace and calmness to be blanketed over me.  Our option b for July is also already seeing some kinks, so part of me says if there wasn't covid19, people could come and find me on the couch permanently for the next 31+ days with some tea, wine, and ice cream.

For now, I will bid a complete farewell to the first CDKL5 Awareness month that we endured without our little bear present.  I will go into the front yard and remove the awareness yard sign and tuck it in its place, ready for its debut in June 2021.  I will attempt to prepare myself for another month of new Sonzee-less family experiences and memories, and I will give myself a quick pep-talk while trying to reassure myself it will just be another month.

The Mighty Contributor

Monday, June 29, 2020

21 Weeks

My Dearest Sonzee Bear,

How are you doing my love?  Another week has gone by and by the time of my next letter to you, another month as well.  The months passing hurt more than the individual weeks.  Maybe it is because that means 4ish of them have come and gone without you being here?  Maybe it is because seeing a new month makes it in my face more real that you are gone?  Each week I can feel myself believe that simple yet obvious fact a little more.  By little, I mean nonmeasurable to the naked eye, but internally I know it has occurred.

I found myself watching two different movies this week at night after the house was asleep, both around the concept of grief.  I am not sure why I considered it to be the best of ideas, but in the end, besides finding myself hysterically crying at 1:30am on the couch, I think I needed to watch them?  I am not sure I am as strong as the characters, but the messages resonated and I have been playing them in my mind on a loop. 

I feel like I am stuck in this space of trying to move forward without you, while not feeling this suffocating guilt and feeling that that would mean I am leaving you behind.  At the same time, I actually wonder if my being stuck is preventing you from being able to move forward yourself?  I truly want your soul to be able to do what it needs to do now without it being me who holds you back.  There were no clear cut answers when you were here, and there are certainly less with you gone.

Wednesday will represent the second July 1 since the summer of 2014 that we will not be in NY.  The first was the year you were born because we were so afraid of being in the middle of nowhere so soon after your epilepsy diagnosis and now the first summer after your death.  In a sense that almost seems fitting, but the reason for not going this year was made more by forces greater than our control vs our desires.  Although to be 100% honest I am not sure I am ready to be that far away from you for so long just yet, so maybe you played a roll in the way this summer is playing out?

For the first time I am doing ESY at FBC this summer (over zoom) and we begin officially on Tuesday.  I am overall excited, but a little nervous because instead of tagging onto circle times like how it was during spring, this is me being front and center with each kiddo.  I am sure by next week I will feel better about it.  Whether fall classes will be online or in-person have yet to be determined at this point, and I am unsure where my opinion lies.  For different reasons than everyone else my biggest fear for returning to the main campus is whether I can actually walk into the building and walk down your hallway and walk into any classroom you have ever been in or the room has shared a bathroom entry with.  I honestly don't know how in person would work at west valley either because I am afraid the reminders of it all staring me in the face and surrounding my day might cause me to break down multiple times a day.   For now, I will just focus on taking each virtual ESY day as they come and just wait and see the options we are given for the fall and how I am feeling when a decision needs to be made.

As always, I hope you are staying safe and healthy.  I hope you are having the most fun possible and that you aren't missing us all too much.  I hope you feel safe and comforted and that you know how much you are loved and missed.

Love always,

The Mighty Contributor

Thursday, June 25, 2020


Sam and I have been attending a virtual grief support group for bereaved parents on Monday's every 2 weeks.  I personally find it therapeutic and a safer place to say the thoughts aloud that I might sensor around others who (thankfully) haven't lost a child.  There are just some things you cannot relate to or comprehend unless you have joined this group.  At the end of the group this week we were all asked to use one word to describe where felt we were in the process.  I have a difficult enough time trying to identify with one word as a description on a good day, and of course the minute the question was asked every single word left my internal dictionary.  I started by saying that it really varies depending on the hour, but overall, the word I chose was confusion.  I don't really feel that word does my emotions justice, but I cannot find a better word to explain the myriad of thoughts that consume me.

We spent her life on auto-pilot essentially, trying to find everything and anything to ease her symptoms and make her quality of life even just an ounce better.  We didn't dwell on the situation, in fact, I feel like at times we even embraced it.  My internal motto her entire life was that I didn't have to spend the time worrying about her death or what would happen after because one day it would happen and after that point, I would have all the time in the world to look back and relive it all.  It was one hell of a ride, so many emotions and feelings along the way placed on this virtual back burner.  Now here we are, a week shy of the 5 months marking of her death and that motto couldn't be unfolding more accurately.  We hustled, we made it all work, we balanced it all like it was a profession and then it just stopped.  Our 4 years 11 months and 22 days of making lemonade out of lemons was obliterated in an instant and now there is a calmness in our house that makes absolutely no sense.

I can't figure out how to even make sense of the situation much less any of my thoughts.  Is there even a way to do that?  Life for the rest of us continues to go on, but a hugely significant piece has permanently disappeared.  There are no more fights, emails, or lengthy phone calls between insurance companies, doctors' offices, and pharmacies over medications and procedures that "aren't medically necessary".  There are no more meetings, evaluations, service plans, or any amount of time needing to spend on those items.  No more hours are being spent organizing supplies, ensuring the appropriate supplies are en route or approved.  There are no more appointments, random hospitalizations, or even scheduled ones.  No nurses are opening my garage and letting themselves into the house or sitting next to me in the car listening to all my thoughts and becoming part of our family.  There are no daily medication times, no alarms signaling reminders, no extra precautions that are needing to be taken to go anywhere or do anything.  We aren't limited to when or where we can go anywhere having to consider its location to a large children's hospital.  There are no more sleepless nights due to the fears of seizures or pain disturbing her night. It all stopped, in an instant, and now there is just this deafening silence that is filled with constant replays of a life we no longer live leaving all the emotions once ignored to finally be addressed...and so there is...confusion.

The Mighty Contributor

Monday, June 22, 2020

20 Weeks

Dear Sonzee Bear,

20 weeks and (sadly) counting my little bear.  I feel like this should be some celebratory moment due to the amount of time, all I can think to celebrate is how I have actually survived this long without you here.  Maybe that isn't even entirely true because so much of me went with you all those Monday's so long ago.

Today was supposed to be our first day in New York.  I wonder how you would have handled the long flights to and from Israel.  My guess is you would have handled it like a champ, but I do wonder how we would have worked out all of the logistics to make it all possible.  One of those little mysteries we won't be privy to knowing.  I keep thinking about whenever it is that we are going to be flying without you...honestly, it's a first I am really not looking forward to participating in.  I already anticipate a minor breakdown in security.  That is one of those differences between when you were here and now, instead of anticipating all the possible scenarios of what people might say about you, or to us on your behalf, or the fears of stares and what people might be thinking about you, I anticipate what people might say that could cause me to react negatively or what might cause me to breakdown and in what manner and how I can possibly, maybe, handle it all.

This last week for some reason I have been a little more outspoken in general when people say or do something that really makes my skin crawl.  I think we can blame Harper's mommy because she told me I have 18 months from Feb. 3 to be societally excused over anything that comes out of my mouth.  So, I just decided to embrace it...oops?!  The truth is, I was barely hanging on to my sanity and my filter in general after everything we were thrown into living life with you, and now since you have left, I just don't have the wherewithal to deal with certain things anymore.  I think this is the reason that phrase sorry, not sorry was created.

Yesterday was Aba's day, we made the best of it for him.  Laeya made a craft in your honor for him and I placed it on your rocks for him when we went to visit you.  We took a picture with everyone, and sorry we stood on your feet, although you are so used to that.  Noam has been sleeping with the book of you two again and carrying it around.  Laeya and Meena have been dressing up their Sonzee Bears in various outfits when they play.  Everyone except for me went into your spa again yesterday.  I am sorry, I still can't, but they have been having so much fun. 

The jury is definitely out on that garden I started almost 6 weeks ago.  They are colorless but not drooping?  There is a reason I don't typically participate in this planting thing.  Aba said he is going to install a drip line thing so hopefully that will keep everything getting appropriate water and make it more of a chance of being a success.  The good news is that we have birds living in the cactus in the front yard as well as the trees in the back, and hummingbirds across the street all the time, so once your garden is established I feel like it will just be a bonus for them to come and visit.

Speaking of hummingbirds, we spent a large portion outside of the house Saturday afternoon until after Shabbat ended and there was a hummingbird that just wouldn't go into the tree.  I noticed it because it was just dancing back and forth across the street high above the large tree there and every once and a while it would fly over towards us and into the backyard.  I always take notice now when they are flying around, but this was different.  In the back of my mind, I hoped it was you just coming to be near us from a little bit of a distance.  (No, I am not calling you a hummingbird per se) But if it was you, thanks for the visit.

Anyway, as always, I miss you.  We all miss you and wish you were here.  Please remember to stay safe and remember we love you so much.

Love always,

The Mighty Contributor

Wednesday, June 17, 2020

CDKL5 Awareness 2020

It is after midnight on many of my friends' Facebook pages.  The June 17 CDKL5 awareness posts are starting to consume my newsfeed.  I read them and the tears fill my eyes.  We are all on different journies, yet the same path, and no matter what, it's a heartbreaking one at that.  What is there to say?  How do we really make others aware of the significant impact of one teensie tiny genetic error?  There is no one storming the streets demanding a cure, yet some of us wish we could storm the gates of heaven to see the children who were stolen from us.  There is no one who has found potential cures skipping every potential phase of a trial in order to speedily find a way for those children who are left here to not have to continue to live in silence, enduring thousands of seizures, and with significant developmental delays; yet many parents and family members attempt to make the world aware that something is needed by sharing their individual stories.

I honestly haven't figure out what it takes to get onto Ellen or make a big enough deal that anyone who is a someone will fight for our rare cause.  A cause that isn't reaching into the homes of every single person in this world due to any lack of trying.  I assure you every parent of a child diagnosed with CDKL5 Deficiency Disorder does their damnedest every day of their lives to try to eradicate the nasty impact of this disorder on their child.  It is literally a fight to the death type of attempt, the worst game of beat the clock, and yet sadly many best efforts are just that...efforts that ultimately come up short because sometimes your best just isn't enough.

We have been lucky to have been able to "celebrate" CDKL5 Awareness day for every single year of Sonzee's life and now the first of her death.  Ironically when she was a baby we were told by so many parents of diagnosed children how lucky we were to have a diagnosis at such a young age.  I never felt their extended joy on the topic, and thankfully those parents don't share the same pain we are living now without her.  While there is a sense of relief in having an answer as to why your child is seizing, why they are not making eye contact, why they are not meeting developmental milestones, why they are struggling with feeding issues, why they are unable to be fully functional members of society, there is absolutely not one ounce of luck that comes with having a CDKL5 diagnosis, no matter the age of diagnosis. 

I wish June 17 wasn't another day that is tainted forever.  I wish June 17 meant more to more people and that all of the awareness efforts were not in vain.  I wish that June 17, 2020 was the very last CDKL5 Deficiency Disorder awareness day that was needed to share with the world the devastating effects of a CDKL5 mutation.  And for now, we are left to making Facebook posts that hopefully people share and to dressing in lime green, with the knowledge that some of us don't even have our children to do that anymore.

The Mighty Contributor

Tuesday, June 16, 2020


I spent a significant amount of time in her room between Friday night and Saturday morning.  Her biggest sister and I were having some quality bonding time and it was a good location for us.  I stared at her walls for what felt like an eternity.  All of her handprints, footprints, pictures that I printed from school and placed into frames, participation certificates, the giant picture we had made for her funeral, it was all there staring me in the face.  I tried to not think, I tried to actively turn the switch to off, but it didn't matter what I did, the tears began to fall.  I repeated in my mind words that have been said to me over a million times, "it's ok to cry in front of your kids" and "it's good for them to see you cry", but oh how quickly my oldest noticed.

"Ema, are you crying?"  I replied with a shake of my head and my hand reaching up to wipe the tears.  She replied with "It's okay Ema, we all do it".  "Meena cried at Auntie A's the first time she slept over after Sonzee died".  She continued to tell me how she and her sister talk about how much they miss Sonzee, which brought me a lot of peace and comfort because I always worry if they keep their feelings bottled me.  I extremely dislike crying in front of others, regardless of our relationship, it makes me feel extremely weak.  Apparently, there is still more to Sonzee's mission because she's still working her magic by enhancing my skillsets from afar.  Ema is now unable to control her ability to stop the flow of tears (check).

Staring at all of her life framed on walls is a double-edged sword.  It proves she existed, it proves it wasn't all just a dream, and it proves she was alive.  Yet, she isn't here anymore, and it makes me wonder, where did she go? what is she doing? who is she with?  Does she look the same?  I can't look at her past without wondering about her present or future and I need to be willing to accept all the feelings merging together at once without warning; which is proving to be a newly unanticipated challenge

The Mighty Contributor

Monday, June 15, 2020

19 weeks

Dear Sonzee, 

19 weeks my love.  I am unsure how the days keep speeding by and turn into weeks since you were last here.  We are halfway through June now and father's day is upon us in 6 days.  I won't brag, but I did something really comical for aba's gift, don't worry, you are part of it.  Hard to believe another significant day is about to be here and you won't be.  We are still not used to that, in fact, some days I think that fact has only gotten worse, but maybe after all of these firsts are behind us things will be better?  I am unsure if that will be the case because we will always know you aren't making a surprise appearance, yet it will always be disappointing when you don't, and then we will have to just continue to make the best of the day despite that.

In 3 days is CDKL5 Awareness day.  I have hardly been raising awareness since you have left us, and definitely not so much during this years June awareness month.  Short of posting your death certificate each day, I have little I feel like sharing right now.  I feel slightly guilty about that.  I keep thinking of various ways I could have raised awareness this month in your honor, but I will have plenty of years to do it.  Maybe next year I will be in a better mental state regarding my feelings towards everything.  It is so hard to literally hate the lack of something that made you who you were.  I used to tell myself while you were alive that I didn't hate your lack of CDKL5 because it did make you the you we loved, but it's hard to not hate the very thing that aided in your no longer being here to kiss and hug.

I am unsure when I started to post a video or a picture of you each day from a previous year, but I am really loving the trip down memory lane every day.  Each picture takes me back to that specific moment in time and I can actually remember the moments.  Sometimes though they make me wonder if we did too little?  I sometimes wonder if I was so tired I didn't give you my all?  I won't ever know that answer, but lately, it has been weighing on me.  I know deep down that everything happened how it was supposed to, it is just hard to accept it all the time.  This time last year we really thought you were perfect, at your very best.  Hindsight is always 20/20 and I typically end up disliking it.

Aba has been placing way too many rocks by you, so I have started back at decorating them.  Your basket is literally overflowing.  He tells me to just keep coloring them, yet I keep explaining that we have years of rock placing.  I colored one already for July 4th because I am running out of ideas.  Morah Zupnick gave me a great idea to color one for Covid19 (I am so glad you are missing out on this one).  

I hope as usual this week treats you well and you know you are extremely loved and missed.  I hope you are making friends and are not lonely at all.  Remember to stay safe!

Love always, 

The Mighty Contributor

Friday, June 12, 2020


Watching television isn't really a big thing for me.  Every once and awhile there is a show Sam and I will watch together, and on occasions, I will find a show that I watch myself.  My typical rules are usually light and airy comedies or lately every DisneyNature episode on Disney+.  I decided yesterday maybe I should consider watching a new show, so, last night I ventured over to Netflix.

Sweet Magnolias showed up immediately as a recommendation and I figured, why not?  I pressed play, and season 1 began.  Somehow the episodes were flying by and I decided to look down at my phone notice I had missed some texts from my sister.  I saw the time and realized I had not yet taken a shower and after mentioning that to my sister I wrote the words "this takes me back to the days of Sonzee's hospitalizations"...and then I hit erase.  I put the phone down immediately and got up to go take the shower.

In May of 2016 during Sonzee's 28-day hospitalization I binge-watched the entire series of "Parenthood".  My favorite part besides cuddling next to Sonzee and figuring out ways to prop up the computer on either the food tray or my lap without annoying her was having to explain to every nurse or doctor who walked in I wasn't crying over Sonzee, but rather the show.  Eventually, my "hospital show" became This Is Us, I was all caught up by the end of her 22-day stay in December of 2018, but she never had another lengthy hospitalization to watch any of the episodes that came out after.  I have no intention of ever finishing that show. 

Sometimes I am proud of myself for not being aware of certain obvious situations for a little because, eventually, it becomes obviously apparent and it's too late to hit the breaks before the inevitable crash takes place.  I found myself unable to stop the hysterical sobs that accompanied me into the shower, it's almost too much to handle at times.  The traditions that were created out of less ideal situations became my comfort, they became my norm, they were things that were just for her and I.   So I will tell myself that she is sitting here with me as I watch a show that 150% would have become one of our "hospital shows" to watch together, but there is no way now that it will be without a box of tissues, and this time, the tears will be over Sonzee.

The Mighty Contributor

Tuesday, June 9, 2020

18 weeks and 1 day

Dear Sonzee,

Today marks 18 weeks and 1 day since you were last here.  This past Friday we donated your PPod chair and all of the accessories to one of your friends.  I felt the family wasn't exactly sold on its overall benefits, but I know the amazingness of that chair, so I figured in time they would come around.  I did message a mutual acquaintance to let them know that I donated the chair and to just check in with the receiving party to make sure all was well.  Then I read a message on Facebook that the chair is now fully embraced and loved.  Despite not being worried that this would be the ultimate verdict, my heart needed to know this was indeed the fact and so now I feel more at peace. 

In case you forgot, that chair was huge, and between the chair on its frame that was sitting in the corner, and the accessories aba and I shoved under our bed, our room feels like we just gained about 200square feet.  I will admit I finally put away the oxygen concentrator, your two nebulizers, the pulse oximeter, your Tobii eye gaze, and the remaining items of yours that we are keeping.  All that is left on the floor of yours now is the suction machine I haven't decided on keeping or giving away, a binder from FBC that needs to find a new home for a child who has a visual impairment, my hospital backpack that I cannot bring myself to unpack, the large floor mount for the Tobii, and the special tomato chair that we would like to sell.

Bubbie went with me yesterday to visit you.  I took her on a little stroll around the cemetery showing her the headstone we settled on, the color, and the other items.  We combined ideas originally from walking around, so it was the easiest way to explain it all.  The weather was actually really beautiful, just really windy so I was thankful I was wearing a mask because the sand was blowing all over the place.  She took home a rock to decorate for you as did I because I am behind on documenting some things.

Your older siblings have been taking advantage of the wind and have been flying kites in the front yard.  As I was watching them I could picture you sitting in your Rifton on the driveway with nurse Paige or myself holding the string and you flying your very own kite.  Since that isn't possible I switched my thinking to you were flying around with their kites.  I am pretty sure it isn't too far from the truth because after failing for a complete day to get Laeya's kite to fly it actually did for a significant amount of time yesterday, so thanks for the boost.  She was so excited.  She had been feeling really down about it on Sunday.

We have been continuing the tradition of going back to the carwash regularly.  Noam is constantly saying "tarwash? Sunday, Dondee" He knows that is what needs to happen on Sunday.  We haven't cleaned the inside at the carwash since quarantine started, and I tell myself every time that I will come home and do that part, but I have completely slacked.  The outside of both cars look very nice, but the insides are essentially a lost cause.  I did place 2 garbage cans...but it isn't really doing the trick for the handprints all over the glass. Maybe this weekend?

Sadly, we received the final word that camp has been canceled for Laeya and Tzvi, and so with a family vote, we came to the decision that New York was just not in our best interest for this summer.  I have taken some time to process this as it seems this entire year has been full of far too much change for me to grasp.  I think I am the one most upset about not going, but I do know it is for the best.  I just want to go back to you being here and us doing a redo for the challenging turn out of last summer when you spent the entire time sick and traveling all over NY to various hospitals.  In the deep recesses of my soul I know I wasn't really in the best mental place to be going to NY, but I felt like I needed to do it to try and help myself move...not on, but in some direction.  Clearly, that is not what is meant to be, and so until summer 2021, we will be missing our vacation village family and all the first memories your oldest sister and brother were going to make at sleep away camp.

This whole entire year has been one huge horrible excuse for a year.  I am at a point now where I find that I should just continue to be beaten while I am down, so I hope all of the "worsts" happen during 2020 so we can at least deal with all the low blows all at once.  It seems to be working out that way regardless, so what're another 6.5 months of potentially added "let's try to make this a positive" situation? 

I hope wherever you are that you are having a fantastic time and not having to deal with any of the challenges that life presents us with down here.  I hope you get to sit on a light post and just take in the beautiful sights and only experience the joyous parts of everything that I can only even begin to imagine.  As always, stay safe and don't forget I miss you, as do so many many people, and we love you and we hope you are doing well.

Love always,

The Mighty Contributor

Friday, June 5, 2020

Life goes on?

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

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

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

The Mighty Contributor

Wednesday, June 3, 2020

4 months

Dear Sonzee,

It's hard to believe it really has been a full 4 months since you were last here in my arms.  It's so strange to me because I can still close my eyes and feel your weight in them and your face tucked under my chin.  I wonder as the time goes on if I will eventually forget what that felt like?  I guess that is eventually something I will at least start to fear, but for now thankfully neither has occurred. Aba misses biting your cheeks, although I am unsure if you are missing that yourself.  Your poor cheeks were always so red after he did that, it would take me two seconds of seeing you to get angry at him.  He always said they were so yummy he couldn't help himself, but sheesh.

Your ppod chair has safely arrived at Andrew's, and he has been loving it.  His parents are so grateful because he is now much safer because it is bigger than the smaller one he was in.  His mom messaged me yesterday to tell me they found your bracelet tucked inside the fabric.  It was the one with the "s" engraved held together with red string.  I had forgotten about it, but I do remember when we lost it.  The funny thing is that I am pretty sure we lost it back in Phoenix before we even went to NY, which means that it made it through a couple of washes and traveling.  His mom said she felt a positive energy when she found it, and I have been thinking about it all night, and I think it should stay with them because that is clearly where it is meant to be. 

Yesterday Aba and I went on a quick day trip to take care of some business.  We began talking to someone and without thinking, I said "we have four children".  My heart sank at how fast the words came out.  I quickly thought to our recent grief support group where we discussed that I don't have to tell every person about our life, it isn't everyone's business to know the intricate details, and apparently, my subconscious felt it wasn't in my best interest, but I cried myself to sleep because of it.  I am so sorry.

Tzviki made your monthly milestone rock for today.  It came out really nicely and I am going to head over this afternoon to place it by you.  I am envisioning how all the rocks will look come the fall when your stone and items are all placed in the area.  We are just waiting for the proofs to come back, which should be sometime within this month and then whenever the stone arrives it will be engraved and placed shortly after.  The tentative time frame is sometime around the beginning of fall for it all to be completed.

I hope you are doing something fun to celebrate your 4 months in Gan Eden!  Continue to know that you are extremely loved and missed here.  As always, stay safe!

Love always,

The Mighty Contributor

Monday, June 1, 2020

17 weeks

Dear Sonzee,

Today is the first day of June, and at 1:08pm it will be 17 weeks without you.  Today also marks the last Monday of school for your older siblings and it would have been your second Monday of summer break.  Today is marking a lot of reopenings in Arizona as far as activities go and after much deliberation between aba and myself, we have decided to allow your siblings to start back at Hubbard at the end of the week.  They have a very strict policy set into place that makes us feel as comfortable as possible, however, it is with extreme sadness I inform you that the special needs program at this time has been placed on hold.  I have cried about it a few times now, I know it makes little sense since you aren't here anyway, and I do understand it is for good reason, but I am still so sad.  Aba and I have wondered if we would have begged coach Ed and Mr. Bob on the down low to allow you to go during a lunch break as an appeal on behalf of your quality of life.  It would have been extremely challenging for us to take that away from you, after all, your entire life we did our best to juggle a form of quarantine and balance your quality of life in all areas every single day.

I am having a very difficult time with the kangaroo paws in your garden, so if you could pop on over and sprinkle some life back into them I would be greatly appreciative.  I have spoken to at least three high-level moon valley nursery people and none of their advice seems to be consistent or helpful in keeping those plants looking as good as they did for the first 10 days.  Sigh, I knew it was a long shot, but I am still upset over it and unable to throw in the towel on them.  I haven't really been one to give up on anything related to you, so I will call this par for the course.  I would really like them to be as pretty as their neighboring milkweeds.

Today marks the beginning of CDKL5 awareness month.  I placed a new awareness sign in the front yard and aba placed one in Auntie A's yard.  I realized last night I should have done a fundraiser in advance and then sold the signs for your and learn right?  Auntie A says I can do it next year, so let's hope I remember in enough time to do so.  I am torn on adding the profile frame we made on Facebook a few years ago to my profile because part of me is still wanting to have nothing to do with that stupid string of characters.  I think it is still a little too soon for me to be spreading anything besides the fact that the disorder can steal more than just milestones.  I am aware that right now I am just not up to helping push for a cure and honestly no newly diagnosed parents want to hear that their worst nightmare can actually become a reality, heck, no currently diagnosed parent wants to face that death is possible either, so I think for now I will just keep the picture of you and me without any mention of CDKL5. 

Mimi's mom (Auntie Rachel) sent a rock to add to your gravesite.  It is really pretty and I placed it by you yesterday.  Meena found a heart-shaped rock over Shabbat in the front yard and she painted it yesterday and I will be bringing it to you tomorrow, along with a "my first Shavuot in Gan Eden" rock.  Sorry, it is late, when I went to see you Thursday I immediately realized I had forgotten to make one, so now it's been completed.  I sprayed all of your rocks with the clear coat acrylic spray again yesterday to make sure the sun doesn't damage them.  Tzviki is making your 4-month rock for Wednesday, I am excited to see what he decides to do.  I often wonder what your place looks like at night, are the glow paints still glowing?  Have you gone recently to see everything? 

Your siblings and aba have been using your swim spa, I personally cannot bring myself to get any closer than walking up the outside steps.  I don't know why specifically, but the thought of going in it without you is just something I cannot bear to do.  I didn't feel like explaining to everyone that I was going to cry if I stepped inside yesterday, so I just told them I wasn't in the mood to go in.  I am so glad that it is being used, but really you should be inside of it.  Your siblings are constantly arguing over who uses your pool floats, you should pay them a visit and let them know that isn't nice, maybe they'll listen to you?

I hope that wherever you are isn't as crazy and unsettled as it seems to be here these days.  I hope you aren't alone and someone is there to guide you as you navigate everything.  I hope and pray you can come and visit as often as you like, and I really hope you aren't in any pain or having any seizures or discomforts.  I hope I am ready for you to visit at some point soon because I really really miss you.  As always, stay safe and know we all miss and love you.

Love always,

The Mighty Contributor

Sunday, May 31, 2020

Goodbye May

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

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

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

The Mighty Contributor

Thursday, May 28, 2020


Three days are remaining in May.  I really dislike this month in general because it has always been the month of her 28-day hospital stay.  The number of consecutive days never did get trumped, but there were a few close seconds.  The month of May did have its perks, like the fact that for some reason the last week of the month would start her on some sort of seizure vacation until around the beginning of July.  Sometimes she would go close to the entire month span without a large seizure and only have her millisecond drops or spasms, sometimes it would be days.  Whatever it was, we never had a reason, it is just what happened year after year from 2015-2019, every single end of May.  I hope wherever she is that she has been enjoying seizure freedom for the last 16 weeks 2 days and 21 hours, if not I will have a lot to take up with the upper management.

On Monday it becomes June, another new month to start without her here.  It also happens to fall on what will be another new week without her here.  In 6 days it will be a complete 4 months without her here.  I cannot comprehend how summer is already here.  I really feel like I closed my eyes and it all happened in a blink, but yet it feels like the longest close to 4 months ever that I wish I could have actually slept through. 

Every day since February 3 has brought something new.  Supposedly the first year is the worst because of all the "firsts" you get to experience in a new way, but forget any of the special days, every day for the rest of my life is going to be something new I have to figure out without her here.  I dislike all that comes with that little fact.  Even in the crazy world of CDKL5 and Sonzee, we had a norm, we had a routine, and we had inconsistent consistency.  There was comfort and familiarity in the inconsistent consistency and we even relied on it, or at least I did.  I still feel so lost without her and the chaos as my guide, and I really really dislike all of this change.

The Mighty Contributor

Monday, May 25, 2020

16 weeks

Dear Sonzee,

Today is 16 weeks, and in 10 days it will be 4 months without you.  The past week has been really tough on me.  I feel like there has been so much that has changed in the last 4 months and it is finally catching up with me.  Maybe it is just I am finally accepting some of it, but then again I am really not doing so well with accepting where I am actually at with it all, so maybe it is just that it is all catching up with me and then some.

In an entirely different life we would have been boarding a plane for uncle's yesterday.  Tomorrow we would be going to Israel.  I am unsure if we would have been able to fully convince nurse Paige to tag along with us, but I would like to think that she would have ultimately said yes and joined us.  You and she would have been flying high style in business class to ensure you had the room you needed, and since she obviously would have been your wing-woman she would have been right next to you.  If El-Al would have allowed me to visit I certainly would have, but you would no doubt have been in amazing hands.

I was so nervous about you going on the plane for such a long time and we had already started working behind the scenes on your TPN/Lipid situation.  It no doubt would have been a hands to the sky situation and we would have just had to do the best we could.  We had planned on staying a month and then going back to uncle's to let Laeya and Tzvi get used to the time zone change before starting sleep away camp in PA 2 days later.  You, Noam, Meena, Aba, and I were going to go up to VV right after we dropped them off and get back into our summer groove.

Stepping back into our reality, all of our flights have been canceled, camps aren't sure they are happening and if they do we haven't decided if we are going to send your siblings.  We have no idea if we are spending the summer in Arizona or not, and we have made some really insane huge decisions this past week that I am still not fully able to talk about without crying.  In my mind it makes no sense because the big picture is really amazing, but right now I have accepted that it has become a lot for me to accept.  After all, forget asking me 5 years ago where I saw my life, let's just go to 5 months ago and it would have been an entirely different book of chapters.

On that same note, we celebrated your graduation from preschool last week.  FBC did an incredible job honoring you and helping us along with the entire staff get some closure with that period of your life.  Fox10 had a segment about your graduation and you were on the news in 2 different pictures.  I found myself so excited when I saw you but crying at the same time.  I made a slide show tribute for the staff and I have watched it 100 times myself.  I will always wonder if Madison would have agreed to send you back for Kindergarten.  We had just had your IEP the Monday before you spiking the fever, and by the end of the week Aba and I concluded we would most probably send you to FBC, but we would modify the schedule so you could also attend PHA for part of the day.  We would just keep that portion out of the IEP so you would receive all of your services and educational components at FBC, but still get to spend part of your time with your siblings and also be exposed to Judaics.  I would have really loved to see that all come together.

Yesterday we finally started refilling your swim spa back up with water.  It is as clean as can be and has two new filters.  Your siblings will be excited to get back into it, but we are going to make it a little bit cooler than what you would consider ideal so that it doesn't get insane with the high temperatures coming this way (think 107-110).  Hopefully, now that it has freshwater it won't be as challenging to keep balanced. 

Meena turned 7 on Saturday.  It has been so difficult for me to process her being 7, but I think that is because I forget you would be 5.  If you were 5 it makes complete sense she would be 7, but in my mind you are forever 4, so it makes her aging a bit difficult for me to acknowledge.  I even wrote in her birthday card happy 6th birthday, she didn't even believe me when I told her I didn't reuse the card from last year, but she was confused why I put 2020.  Overall her birthday was a success, and I even managed to wear my usual birthday leggings and shirt that I last wore for your advanced 5th birthday celebration and then again on your actual birthday.  I gave myself an inner nod for being able to wear it and not cry, acknowledged that I last wore it with you and was able to celebrate the night, so I was proud of myself.

Your absence still feels like such a significant pain and gap in my heart.  I find myself sitting alone staring off into space knowing the tears are on the verge of coming and trying to not fight the sadness more often now.  It is almost unavoidable, and I guess that's okay, and while it is something I wish wasn't the case, I am also ok with it because if I wasn't then that would mean you didn't even exist, and that would be worse.  I still definitely wish things were different on so many levels, but since they aren't, to quote one of my favorite songs "I'll go to bed, dream of you, that's what I am doing these days" (Or at least attempting to do).

I hope you are staying safe and know that we all miss and love you incredibly.

Love always,

The Mighty Contributor

Wednesday, May 20, 2020

To the newly diagnosed parent of a child with a rare disorder

To the newly diagnosed parent of a child with a rare disorder,

I have debated on what to say to you or your family member as you join our support page because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey.  You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of, you are simply wanting some hope.  That is fair, we all do when we start on this journey.  We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward.  I have to warn you about the hope you seek because that word itself will take on various meanings and forms throughout this journey, and I feel it is only fair to warn you, that sometimes, hope ends up being a crapshoot.

Despite what you are considering the potential worst-case to be, the reality is, as you begin this journey you are unable to truly grasp what that even is.  The worst-case will morph along this journey.  You will find yourself thinking at various points that this is it, this is the worst-case, but I can assure you, it can always get worse, and at times, it actually will.  What I can also tell you is that there will always be some sort of lift to help you out of the worst-case cavern you will find yourself in.  Sometimes you will be stuck there for far longer than you anticipated, sometimes you won't even realize you were there until it is over, and at some point, when the real worst-case hits, you will find that you simply have to learn to just sit inside it for some time.  It is just a part of life, and as much as we want to pretend these types of situations don't exist, the reality is, they do.

Despite the potential worst-cases, I implore you to not don't spend your time fixating on what they might end up being.  There are so many amazing cases that you didn't know could even exist that you will also encounter.  What your family has just embarked on is a journey with an ever changing situation and ever-changing emotions, and it is a roller coaster to say the least.  As you all learn to tackle the ups the downs all you can really do is ride the waves with an open mind and open heart, and understand that your life has forever been changed, but you will find a way to survive, even if at times it is simply by taking a deep breath.

The bereaved mom of a child who was newly diagnosed 5 years ago.

The Mighty Contributor

Tuesday, May 19, 2020


Every 30 days or so the groups I have set to "mute" start to show up in my newsfeed.  Facebook has learned me pretty well and for the last 5 years has made any CDKL5 page I follow the front and center item when I log in.  I have gotten really good at just scrolling by the posts or simply just clicking a "like", "love", or "care" just to show my support.  Over the last week or so I have actually found some energy to post a comment here and there, nothing too deep, but something the poster can hopefully find helpful.  It was in responding to one of those posts that I caught myself beginning to write about me not missing that specific part of CDKL5, but I erased the words and wrote something different.  It is one thing to think that, but to say that aloud seems almost wrong.

One of my closest friends is a mom who has a child diagnosed with CDKL5, and with her, I can be a little more blunt, just a little more me.  I found myself caught in a similar moment again in our conversation where I realized not only did I not miss those moments, but I had actually forgotten about the part of life with Sonzee.  All the bad of the disorder, all of the sleepless nights, the seizures, the gi pain, the pain in general, all of that thankfully is hidden in the recesses of my mind until I am reminded of it all.  The day to day thoughts of her are broader, fluctuating between missing her essence and her physical place in our family and the fact that her life was a struggle and challenge for her.  I do thank G-d for this provision, it definitely has a place.

Yet, this weekend spent in Flagstaff brought forth so many emotions and thoughts.  I found myself sitting outside looking around listening to my girls play together while Sonzee's baby brother was entertaining himself with a bubble lawnmower and bubble leaf blower when an image of a dressed up Sonzee playing around with them popped into my mind.  I was thinking about them all being together, and then snap! the image vanished as I realized I was daydreaming about a child we never even had.  That was never our Sonzee.  I was mourning the Sonzee we never even had paired with the Sonzee we learned to accept and then lost.  It is such a heaviness to bear the weight of multiple grievances.  There is such a huge pang of guilt in not missing certain aspects of her life, in missing a dream of a child she just never was, and in simply not even fully understanding who it is I am actually grieving. 

The Mighty Contributor

Monday, May 18, 2020

105 Days

Dear Sonzee,

Today will complete 105 days since you were here.  I simultaneously wonder how has it been so long and why does it still feel like it all happened yesterday?  The conversations with those around you are etched into my mind.  The decisions we had to make and the emotions we felt are so deep in my mind I could provide a detailed script.  Aba mentioned to me when he thinks about your final time in hospice (which for him has been about one to two times a week) he says it is like reliving a nightmare, it is fascinating to me how we both interpret everything vastly different.  For me, I think about it at least once or twice a day and I just replay it back in my mind as it played out, almost as an outsider, just numb,  I often wonder if that is because during that time I distinctly remember telling him and myself that I wasn't going to spend the time in any other state but the present. After all, I would have the rest of my life to feel everything else, which has turned out to be an accurate truth.

We went up to Flagstaff this weekend.  We visited you at Mt. Sinai on the way there and again on the way back.  I have an inkling you might have come with us as well, but there is a reason you aren't coming to me directly, you know I am still not quite ready to accept things, and so I appreciate you giving me time.  I don't know what to make of the fact that I need you to tell me you are okay but then when something happens that seems like you are doing just that I can't allow myself to believe it is actually coming from you.  I am sorry, I am still trying to balance believing in the possibilities and not feeling like I have completely gone crazy.  Laeya brought her Sonzee bear and she and Meena brought you with them all around the house to play.  They dressed you up during the day with their shirts and hair accessories and at night let you sleep in just the PJs you as the bear are wearing.

Tomorrow I get the initial verdict on what the monument company can put on your stone and what needs to be tweaked.  I am trying to go in open-minded about what they might end up suggesting and changing, but I just hope the main idea is still what we proposed.  I am sure however it turns out it is going to be perfect for you, mainly because I won't let it be any other way.

Restrictions have been lifted here in Phoenix from the coronavirus, but I am still unsure where I stand with it all.  We don't have you to officially protect anymore, but I am still set in my ways, and despite the sayings of "worst-case" being rare, you introduced us to that type of world, and honestly, I don't think I will ever fully be able to recover.  Rare isn't so rare, and I just cannot act like statistics all of a sudden mean anything other than a number that actually does happen.  I am happy for everyone else who can just move back on with their life, but I am just not there yet, for so many reasons.  Aba, as usual, has a completely different view of it all and he is begging for me to give him the "okay" to go to his hockey league and to allow Tzviki back to whatever "pick-up" ice times are being offered, but for now, we are still laying low.

The plants in your garden have survived a week. I know, it is crazy!  There was a questionable moment 3 days in, so I called the nursery and we held back on some water and since then everyone seems to be looking beautiful.  Laeya has named hers Shirley and Noam's is named Minion.  I think yours is just your name and I cannot remember if everyone else's has a name.  Everyone loves to come outside and water their specific plant, but I try to do it when they are otherwise occupied so it is just my time.  I drained the bulk of your spa last week and cleaned out the inside top to bottom.  I am going to finish draining the rest of the bottom with the handheld this week, replace the filters, and then get everything all backup and running hopefully for this weekend.  Auntie A made you a new sign, one that hopefully won't get destroyed in the rain this time, and it is already up on the side of your steps.  I was going to put it on the spa itself but decided with your crazy siblings being so crazy in the water, it would be best next to Mayzie's pinwheel out of the splash zone.

On Thursday morning you are supposed to be graduating from preschool.  I made you a rock to take to you after the virtual ceremony, but it is going to be tough.  I honestly didn't ever allow myself to envision you in a cap and gown, but at the start of this school year, I was getting very excited over how the day would unfold.  None of your siblings went to a school that celebrated preschool graduation in a big way and I was so excited for you to be the first.  I am really thankful the ceremony will not be in person, but I am also really thankful that you are going to be remembered and honored along with your graduating peers.

I really miss our cuddle time these days and look forward to a day they can occur again.  For now, just know I love you and think about you every second of the day.

Love always,

The Mighty Contributor

Thursday, May 14, 2020

Return to "normal"

As of Friday, Arizona's "stay at home" orders will be lifted, and just like that the state will be returning to normal.  Whatever that new normal is anyway.  I am on the ledge with my feelings, I have been from the very beginning.  On the one hand, the entire 4 years 11 months and 22 days of Sonzee's life we spent in a sort of quarantine.  We were extra diligent about who we allowed in the house and where we went.  Anyone close to us was aware that our restrictions followed Pheonix Children's Hospital, and that meant between December and May you weren't allowed in our house and we weren't going into yours.  We did our best to protect her, and if I push any potential "mom guilt" aside, we did a pretty damn good job of it.  Pre-covid19 times were for us, spent as if the virus was around because Sonzee was around, and now, now we are told to return to normal, yet I don't have the slightest idea what that even means because this was our normal.

Today, for the first time in 5 years we are packing up the car with four children for a weekend getaway that we booked yesterday.  A spontaneous trip to the cooler weather for us to go to be in a different location, to continue to do what is familiar to us yet completely unknown because there was no need for preparation.  There are no deliveries to work around, no fear of being 3-4 hours away from the nearest children's hospital, and no nurses to convince that they too need a weekend getaway.  There are no pressures to return to the normalcy of stores, sports, activities, or even socialization because we are going to hide away in the woods, and seclude ourselves even further.  The only decisions I anticipate to make this weekend are whether to sit outdoors or go for a walk.

I can't lie, the entire quarantine period has been a significant relief for us not having to figure out what our new normal is going to look like.  The fear of having to start to face that reality as soon as Friday is making me feel completely suffocated.  I don't know what is best for our family because we aren't the same family we once were.  The horribly sad reality is that we don't have to make all of the sacrifices we once used to make (without even thinking twice), yet that brings on its own form of heaviness.  I don't know what normal is, or what it is supposed to be.  I don't know if I am even ready for any new anything, much less a normal that doesn't revolve around a medically complex child.  What I do know, is that since I am not ready to deal with whatever normal might be, we are going to head over to Sonzee, tell her I will be back to see her Monday and let her know that she can come to join us in 20-degree cooler weather.  All the while I am going to be reminding myself that this weekend getaway is not going to give me any concrete answers or feelings of normalcy no matter how much I would love to fool myself into thinking that it could or would.

The Mighty Contributor

Monday, May 11, 2020

Final episode.

A few weeks ago I started to binge-watch Schitt's Creek.  It was a little slow going, but someone said to stick with it, so that is what I have done.  I have always been selective of the shows I get attached to after my teenage obsession with Dawson's Creek.  The ending of that show while absolutely perfect, left me depressed for ages because that meant the ritual of sitting on the couch, phone in hand waiting to discuss each episode with my friends after each episode had ended.  It has been selective binging ever since.  Since Netflix only has to season 5, that required Sam to get me the final season elsewhere, which he did, last night, and shortly after today I realized there were only three episodes left and the tears filled my eyes.

Let's be honest, it wasn't about the show on the verge of ending that had my emotions on overdrive.  It honestly has practically nothing to do with the show itself.  Sure it has been some great comical relief at night after the kids are in bed as well as it provided hours of occupied but non-think provoking time, but that isn't the reason either.  While I can give some credit to finishing off the night of an as good as could be expected first mother's day without Sonzee, the real credit goes to the fact that the reality is everything eventually comes to an end.  No matter how much you attempt to prepare, no matter how much you know the end is coming, there is nothing you can do to change its course.

Only three episodes are remaining, that means only an hour, maybe more if I have to press pause; but the end is near and in sight.  The tears came out of nowhere.  It sounds so trivial, and maybe even ridiculous to compare the ending of a 6 season show to the final 11 days Sonzee spent in hospice (it feels even more absurd that I can't stop crying over the comparison).  It just flipped a switch within me.  There is no other option but to watch these last three episodes.  I can push off when I watch them to tomorrow night, and maybe even watch only one a night for the next three days, but eventually the show will be over.  There is no way to change the fact that it is coming to an end.  I am sure I will over-analyze the final script and character directions for days to come.  After all, I am not the one who wrote the ending, I will just be the one who has to watch it all play out however the writer sees fit.

That is one reality of the harshness of grieving the loss of your medically complex child.  No matter that we knew her final episode was going to occur during our lifetime, no matter that we had some notification that the ending was becoming closer.  No matter how many warnings you are given, there is still no possible way to actually prepare for when it's the end.  There were only so many nights we could push off her series finally and then eventually we had to press play and watch her final credits roll.

The Mighty Contributor

Sunday, May 10, 2020

Mother's Day Without You

Dear Sonzee,

Today marks my first Mother's Day without you.  I won't pretend today is going to be easy, that would be impossible, no matter how many preparations I have tried to take to make it so.  I don't know why I even bothered to tell myself there might be a chance that I could pretend it was like the other Mother's days' I got to spend with you and your siblings.  While I was fortunate to spend five of them with you, really it should have been my entire lifetime, and instead, I had to settle for only five.  Being that today will start a new way of honoring this day I decided to take a look back at every Mother's Day since you became part of the reason for my day.

May 10, 2015, you were a day shy of turning 3 months old and we started the day with you going to swim.  Poppop was visiting for the weekend because of your sisters' dance recital, so he came and took you into the pool.  Savta was here too and there is a cute picture of you being held by her.  We then watched your older sisters' dance in their recital.  Meena had to be coerced onto the stage and then she stood there with her hands in her mouth like a deer in headlights.

May 8, 2016, you were at the beginning of what turned into a 28-day hospitalization.  It was the first time I celebrated Mother's Day in the hospital, we all made the most of it.  Restrictions were lifted at the time so your siblings came up to the room and we even got to walk you around in a wagon.  The room was decorated with all of the cards and gifts you and your siblings helped to make. 

May 14, 2017, we spent the day over at Auntie A's and went into the pool.  My main regret from all of this year is I cannot seem to locate a picture of you at all, and there is also not one of all of us on my google drive.  I will have to ask Auntie A and aba if they might have one.

May 13, 2018, we watched your brother play ice hockey and then met up with Auntie A and family at As You Wish Pottery. This was the year we started the tradition of going to make pottery.  Sadly that seemed to only last us two years because I cannot bring myself to do that again without you with us.

Our last Mother's Day together was last year, May 12, 2019.  It is probably going to remain my most favorite.  You gave me a coupon for "one-night seizure-free", and we took a couple of selfies together. You came to PHA to help me set up for the spring bookfair (you were always such a good sport about being dragged to do that twice a year).  We went to Auntie A's again for swimming and Uncle Mathias' world-famous (well not really) smoked brisket after going to do pottery.  You even tried the brisket because you were in such a great place with your feeds.   

I am so thankful that if we have to be separated for the rest of my life on a day that became a day for me with your assistance that we ended on such an amazing note.  Thank you for 5 incredible mother's days.  For this year, May 10, 2020, 5 years from the very first mother's day we shared together, we will be doing something entirely different, but completely inspired by you.  Aba picked up red and yellow plants for us all to plant today in your new garden.  I cannot make any promises on how this is going to turn out because like you know, plants are not my thing, but these are supposedly easy after some initial TLC and they are all hummingbird/butterfly specific plants.  I hope you'll come to take a look to give your approval.

Thank you for everything you taught me to help me on my motherhood journey.  While there are two titles I now have the honor of having that every mom who wears would rather not, I thank you for making me a special needs mom and a bereaved mom, because for some reason my purpose in life requires those badges and you were the one who brought them into my life.  They are hands down the most difficult titles I will ever have to live with, but without them would mean I didn't have you, and I would rather have had only 5 mother's days, and 4 years 11 months and 22 days with you than a life without you ever being part of it. So, thank you for giving me the gift of being a mom for the 4th time, specifically for being your mom, and for lending me some of your epic Sonzee bear strength, because today, I am going to really need it.

With love, always and forever,

The Mighty Contributor

Friday, May 8, 2020


Before I go into my room for the night I occasionally do a quick scroll through my Facebook newsfeed one last time.  I have found since Sonzee has passed I have a sort of love and hate relationship with it in general.  I love to be connected, I love to see what's new with my friends and their families, but even though I have muted a significant amount, there is still a lot that brings the lumps into my throat and tears into my eyes.  This week there happens to be the added weight of the anticipation of Mother's Day, and all the posts of crafts and projects already being made.  I know my kids are hard at work on theirs for me (they make me close my eyes when they go to show Sam), but this will be the first of many mother's days that will be spent without one of the reasons I will be celebrated. 

Every year for mother's day on the actual day we do a craft that involves all the kids.  They will typically do a small individual craft or card in advance, but my favorite thing that we started with my oldest is the group project that is completed on Mother's Day together.  We have done frames, shadowboxes, canvases, and a lot of pottery.  In the last few weeks, I have been trying to anticipate how I might feel on Sunday, but the reality is that I just won't know until it comes.  I initially felt like it wouldn't bother me, after all, I miss her every day as it is and we always go to see her on Sundays, so it will just be a typical Sunday for the Zaila's.  Then I started to wonder how we would incorporate her if we did an arts and crafts project when she isn't here to do her part.  She can't pick her paint colors or have her hand held to assist.  I have been wreaking my brain wondering how we alter the day to make some sort of accommodation that still honors the day with her siblings but has her included?

I have thought of so many ideas but nothing seems to make sense, and as the day creeps closer I am panicking for its arrival.  It doesn't seem to matter that I have other children to celebrate the day with, a significant part of my motherhood is due to such a crucial piece that is absent and won't be here. There is really no way to ignore the reality that my heart won't ever be whole again and there is now an actual day that ironically will most definitely make it feel even worse than usual.  There is no way to ignore or sugarcoat the fact that Sunday is going to be horribly, tragically, and painfully difficult, but yet amazingly beautiful all mixed together.  A day that will wrap up my dreams come true and inescapable nightmare and be delivered to me in a pretty bow for 24 hours to celebrate the reality of what has become mine and so sadly so many other's journeys of motherhood. 

The Mighty Contributor

Wednesday, May 6, 2020


Every night before going to sleep I have always walked through the house and turned off all the lights, made sure the alarm was set, and then lastly checked on all the kids.  I always start with the older girls' room because it is the first one in the hallway, then I go to our oldest son's, followed by baby brother, and until 103 days ago, Sonzee.  I do the same thing in each of the older kids' rooms, open the door and make sure they are tucked in, give them a kiss, turn on the fan if it feels hot, whisper "love you", and walk out.  For Sonzee I would walk over to her and feel under to check if there were any feeding, diaper, or tube leaks in general.  I would check her port and make sure the needle hadn't dislodged, double-check her TPN and Lipid pumps, make sure she had enough fluids in her feeding bag to ensure it would last until the morning, cover her in a blanket, make sure she had mermie, push her hair out of her face, give her a lengthy kiss and whisper I loved her and I understood if she had to leave us in the middle of the night, then I would close the sliding doors so there was a space for someone to walk in.

102 days ago was the last night I performed this nightly ritual for all 5 of my kids.  For nights 92-101, I slept right by her side and snuggled up next to her and gave her kisses, but there was no walking by her room to peek in and see her or go check on her like I always had.  It has been over 100 days since my body stopped the routine that had been set into place for so many years.  It has honestly been surprising (but yet refreshing) to me that my mind has done me the favor of erasing all of my engrained and what became involuntary routines.  My mind seemed to just know after she passed I didn't need to do certain things anymore so it didn't bombard me with unnecessary reminders or the feeling of panic as if things had been forgotten.  Yet I have noticed over the last few weeks that the protective mechanism has been starting to falter unexpectedly.

At least two times over the last week I have closed my youngest's room door walked into the hallway Sonzee used to share with us, walked by her bedroom doors that are slightly ajar to her room, and turned my head to look inside at her bed.  It has taken me an actual effort to have to remind myself of the reason she is not laying in her bed and the reason why Sam's laptop bag now hangs on her feeding tube pole.  The split-second it takes feels significantly longer.  The pain it causes is like a fresh papercut over an already open wound.  I have found myself walking into her room to readjust the blankets by the head of her bed and make sure the memory bear and her two mermies are situated in the best position.  I guess my brain couldn't protect me forever, but I also think for some reason some routines are just unable to be broken for long.  I take a quick glance around her room and then walk out, but I still find myself saying "love you Sonze, have a good night".

The Mighty Contributor

Sunday, May 3, 2020

A quarter of a year

Dear Sonzee,

Today marked one quarter of a year without you here.  In the long run, it will seem so significantly short, but today, it feels like it has been 30 years.  The ability for your world to fall apart or burst with amazingness occurred in such short increments of time I wonder so much where you would be right now had you been here, living with us over these last 90 days.  I have been wondering so much if you are changing wherever you are, but I will save that for another post on another day, today, I just want to let you know about what you've been missing here.

Laeya made your glow rock this month.  I hope you see it tonight when you look down on your grave.  Meena painted two seashells she has been saving for you for the last couple of months that we hadn't brought to you until today.  You have gained at least 15 rocks over the last month, all of them are perfect for you and have brought smiles and tears to my eyes.  Aba and I have almost decided on what we are hoping to have on your headstone.  As soon as we submit it all we will be told how much of it is a possibility.  I am so nervous that they will tell me something cannot be done and no matter how much I am trying to prepare for that possibility, I know I will have to grieve that as well.

We have been doing some family grief projects this month which appears to be helpful because everyone is becoming a bit more vocal about their feelings.  It's either that or was just going to happen at this point regardless.  Your sisters have been dressing Noam up in their pink shirts and slippers every night after their "shower/towel" and marching around the house.  It is really adorable, but your poor little brother.  We assume it will eventually sort itself out when he decides he has had enough of it, but Aba made a comment the other day about why they were doing it and Laeya replied: "we couldn't ever do it with Sonzee".  He has adopted some of your blankets as well, including your "bubbie blanket" and when I go check on him to give him one more kiss before I go to sleep it makes me stop an extra second because he looks so similar to you.

Corrinne spent a week in the hospital due to a line infection and ema was so worried for her.  It also evoked so many unexpected emotions within me.  Those are the hospitalizations I miss the least. Those are the moments of fear that I am so thankful are over.  That is the experience I don't miss, but at the same time, those are the emotions that represented our entire life with you.  They offer some weird sort of comfort that we have now forever lost.  There was always some sense of comfort being on the 8th floor of PCH, some nostalgic familiarity that means we were trying to fix something for you or save you.  I didn't know how to feel and honestly still don't.  I am realizing there is always going to be a part of me that just can't let that part of our life with you go, and I am thankful your friends' parents allow me to remain part of it knowing I still get it.

I am unsure if you have been by the house but there is a new memorial garden flag out front along with a hummingbird wind chime.  I am having a "Welcome" wooden sign custom made with a red hummingbird in place of the "O" to place across from the front door.  I am really excited, I just hope when I see you again you don't tell me how much you dislike hummingbirds.  The netting on the front gazebo porch swing was finally replaced from all of the holes.  I think about you every time I sit it in when we are out front, which has been practically every day, despite the heat.

It is getting hotter than imaginable here, but everyone at the cemetery has been amazing putting a chair under the tree near you so I can grab it to put on the sidewalk in front of you, and they bring me bottled water.  My huge peasant hat arrived last week so along with the SPF 30 on my face and body it is at least bearable on the hottest days for around 20 minutes.  I wish I could stay longer, and on overcast days, I certainly do, but it is just so intense.  I am going to ask them this week if it would be at all possible to plant a tree right by you, it can't hurt and the worst they say is "no" and then I am in the same position I am currently.

Today the Friendship Circle had their virtual fashion show and they paid tribute to you by showing your walk down the runway from last year with Emma.  You were so hyper that day, but you appeared to have such a blast with the "Fancy" song that aba chose for you.  It was such a perfect fit, you totally rocked it, and watching it again tonight made aba and I get emotional.  On that same note, Miss. Jaime called last week to ask about your involvement in graduation.  Initially, aba and I weren't sure what to do because you didn't actually get to finish your last semester to officially "graduate", but you are so much of the FBC family it only seems appropriate and fair to you and the FBC staff to honor you in some way.  These types of milestones and events are just really challenging, but thankfully in a sense, we are on corona restrictions because the blow is lessened not having to attend these events in person.

Plans for summer are still up in the air, except we did cancel going to Israel.  To be honest, I was really having a difficult time with that trip all year, including before you passed, so it is a huge relief to me that it is off the table for this year.  NY and PA camps have yet to make their official statements, so we are hanging tight.  I am a mixed bag of emotions over it, where I partially want to stay in lockdown forever, but the selfish me so needs to see my NY framily, especially this summer, so I am still holding out hope on June 1 that some sort of modified option will be presented that will make TH 49 a reality. I don't care if I sit on the porch in upstate and talk through screen doors, I just want the VV atmosphere.

Anyway, I think I rambled enough for today.  Just know wherever you are I wish so much that you were still here, but I know in my heart you are at a level of peace I just cannot compete with.  I miss you beyond words.  As always be sure to stay safe.

Love always,

The Mighty Contributor