Friday, December 31, 2021


Two days ago while in the shower, the words for this blog post began to fill my mind.  The first complete year spent as a physical family of 6, as a parent of 4 physically present children, as a "once special needs parent". As with most years, it was a year filled with many different firsts.

2021 was the first year since 2015 that I didn't ever live in a room on the 8th floor of Phoenix Children's Hospital.  It was the first year I learned just how challenging living in your grief can actually be. It was the year I woke up from the grief fog and fought the world of denial.  If I am being honest, I will enter into 2022 still not mastering the art of accepting and still struggling to allow myself to sit in my grief.

2021 was the year I struggled to balance the parent I once was, with the parent I am not and give myself grace because I won't ever be the parent I expected myself to be.  I spent a lot of 2021 learning to give myself grace in general, allowing myself to acknowledge that being a grieving mother isn't easy and to truly believe it is okay if I own that and fall apart. 

2021 was the year I began to truly listen to my body and my mind and make my limits known to others when necessary.  It was the first year I stop caring as much about other peoples' opinions and at times even expressed that their lives clearly didn't have enough challenges if they were so focused on the frivolous parts of life. Maybe that wasn't the most positive part of 2021, but on the other hand, it is extremely freeing to be able to file so many items under someone elses' "personal problem".

2021 was the year that Sonzee's siblings started to figure out the role she would play in their lives.  Some of them mention her and some of them don't, and I spent 2021 doing my best to accept that everyone grieves differently, and telling myself that it is ok.  It was the year that I wasn't sure how much her little brother remembered of her, but I learned he misses her a lot.

2021 taught me that the phrase "it's just stuff", while true, is still a challenge to accept in both heart and mind. Memories thankfully remain vivid in my mind, and while I fear the day they might no longer, for now, I continue to play them on a continuous repetitive playlist.  

2021 was a year I experienced every emotion of grief and then some.  Continuously.  In random order.  Over and over again.  2021 is the year I started to realize that being a grieving mom is really never going to hurt any less than it did the day it started.  The experiences that trigger the tremendous downfalls will change, but the love is far too great that the pain won't ever dull. That is okay.

2021 was the year that I spent the first 7 months posting throwback pictures of Sonzee's life only to realize one day it was far too painful to look at a single picture of her.  It was the year where I started to experience this grief lethargy that made doing typical parenting and daily tasks feel daunting and nearly impossible.  There is a constant lack of energy that makes anything Sonzee related almost impossible to do.  It was the year I stopped being able to paint as many rocks for her, to visit her grave, and in general to deal with anything related to her life.

2021 was the year that forced me back into a sort of reality with the start of the reopening of the world that essentially closed simultaneously with her death.  Then much like the journey of grief, the inconsistency and unknown path of where life with Covid will continue to take us in 2022, it is sure to introduce me to new challenges, new realities, and new acceptances.  Much like last year's uncertainty of how to celebrate the last year that we had her alive, I am unsure how to honor the first entire year without her ever being part of it.  As we head into 2022, I know she will grace me with her Sonzee bear essence and hopefully, it will be enough to carry me through another 52 weeks of life without her.

The Mighty Contributor

Last letter of 2021

Dear Sonzee, 

Today is the last day of a year you never were physically part of.  It makes my heart physically ache to process that reality.  An entire year you never took part in.  I ask myself often how time continues to move on without you part of it. I find myself trying to process your life and that you were actually part of it physically at one point when I see your picture on my coffee mugs in the morning or on the printed picture pillows.  

I find physical reminders of you around, like when I cleaned out my bag that I used to carry with me to your therapies that had your picture on it, and I found a lavender vile for your labs and a medicine syringe.  We have your pacifiers and glasses hanging by the front door of the apartment, hard to believe that there was a time you would have those items on your person 24/7.  So much of your physical presence is gone from the house, but the items that made you, you, those are still here and probably will be for my forever.

2021 will be the last full year we will ever be owners of the house you (and all of your siblings) were brought home from the hospital to. I once thought that would be our forever home, but honestly, without you and all of your stuff there, it is just impossible to live in that space.  I haven't decided if I will bring a tissue box or two and sit on the floor of what was once the room you lived and died in one last time, or just never go back inside.  I can't decide which decision will be added to the list of the only true regret I have (which is getting mad at Aunty A for taking pictures of you on February 3, I should have never said anything, and I wish she wouldn't have listened to me). We will soon be listing the house for sale and I am sure the day we are under contract will be an emotional day as it finalizes that everything, besides my minivan, that we own in our life you have never physically in (ps: aba keeps trying to get me to agree to sell that too).

As we enter into 2022 I am scared of all of the dates ahead.  In just 10 days it will be your 2nd deathaversary on the Jewish calendar.  I am not ready. In 24 days would have been your 7th birthday on the Jewish calendar.  How? You are still 4.  In a month and 3 days, it will be your 2nd deathaversary on the secular calendar, and in a month and 11 days you would be turning 7 on the secular calendar.  4 dates to signify such meaningful moments of your life and death, but 4 dates that make the next 6 weeks nearly impossible for me to remain above water.  Please help me make it through.  

If I can make any requests, please try to visit this year.  It has been close to 2 years and you still must not think I am ready, but just let me know you are doing amazing and are loving whatever you are up to.  Let me know someone is looking after you and helping you if you are in need.  I am doing my best to put my faith into trusting the journey you are sending me on, but your mother wouldn't be living up to the Jewish mother stereotype if she didn't try to guilt you into a visit.  Love and miss you baby girl.

Until next time.

Love always, 

The Mighty Contributor

Monday, December 27, 2021

99 weeks

Dear Sonzee, 

Today, in 20 minutes, marks 99 weeks.  How fitting that the last Monday of 2021 falls out on the last double-digit week of your absence.  I guess you wanted to make 2022 easy math for me.  99 weeks since I last gave you a cuddle and walked you out of our physical life forever.  I am not looking forward to reliving the history that unfolded 2 years ago over the next 6 weeks.  I find it fascinating how vivid all of the memories are.  What is even more fascinating is how the pain worsens.  Maybe because while I lived it I was completely numb, knowing "I would have the rest of my life to process it".  I can't remember the exact number of times I said that to people from January 24 until February 3, 2020.

This week I began to unpack the boxes into your siblings' rooms in the new house.  Room #1 boxes are all yours, they are still piled in the room that will eventually be the extension of the kitchen.  I cried while I cleaned your Rifton chair.  It was full of dust.  I am not quite sure what brought the tears, but then as I tried to figure it out while I cleaned it, they got worse.  Maybe it is the fact that I was cleaning a chair you won't ever be sitting in again?  Maybe it is simply because it is something of yours.  

While I was unpacking boxes from Noam's room I found your last package of Huggies diapers.  I was unsure if they would find their way back to the keep section since they were on the "Zaila trash" sheet.  I am so thankful of all the mistakes that ended up occurring, those damn diapers found their way back to me.  Randomly I will find medicine syringes or the viles that we used when we drew your blood.  I never know if I should toss or keep.  

Your pink convertible is with all of your siblings' cars on the side of the house.  Another item I just can't part with.  We moved your front porch swing to the new house.  I can already envision sitting on it and crying, but I know mixed in there will be smiles watching your siblings play basketball or playing in the front yard, knowing you spent so much time on the same cushion. 

I know I have to bring myself to open your boxes because they contain the many pictures and items that will be put up in the hallway.  I will keep that task for when I feel compelled to do it, probably when your energy surrounds me enough to just do it.

Aunt Shuly and Uncle Russell and the gang stopped by for a quick visit on their way up to Bear Pines motzei Shabbas.  It was nice to see them.  

Anyway baby girl.  I hope you enjoy your last week of 2021 wherever you are.  I love you and miss you!

Until next time.

Love always, 

The Mighty Contributor

Monday, December 20, 2021

98 weeks

Dear Sonzee, 

There is a lot that happened over the last 7 days.  For starters, we closed on a new house.  The waves of excitement that occur have been followed by waves of tears and an extra dose of heartache.  My emotions bounce back and forth like a ball during a ping pong match.  I am overall extremely content with where this journey is taking us, but the fact that you won't ever physically enter the house crushes me.  The fact that your swim spa won't be coming hangs over me like a dark shadow.  While I know where the saved items of yours are going, the fact that you don't have your own room hurts my heart.  As the truck delivered all of what wasn't ruined during the flood I looked inside the truck for your stuff.  I knew it wasn't on the "keep" list, but I hoped it might have been considered damaged but still tucked away inside.  It was not.  Well except for that horrible chair that none of your nurses ever complained about, despite it being a horrible chair, that somehow managed to sneak itself onto the truck.  I chuckled when I saw it, I know you left that for us.  It will go into Noam's room.

Your brother had a lot of hockey this last week (I know what is new?!).  They are consistently inconsistent, so I never know what the games will bring.  They win some and lose some, but occasionally nurse Paige comes to watch and you know how I love to dress in all my hockey mom gear, so I am not complaining.  Laeya finished her last bat-mitzvah class she and I were doing together.  I cannot believe it is a month away.  I cannot believe on the Hebrew calendar her birthday and your yahrtzeit are just a couple of weeks away.  I'd ask how, but I know the answer, it's just life

This last week was the last before I started winter break.  I cannot believe we are halfway through the year.  I really shouldn't be surprised, after all, life.  Last week Meena managed to break her expander.  I have zero idea how she manages to do what one would assume is impossible, but leave it to her to have performed such magic.  She is back to patching her eyes again.  I bet you would have enjoyed not patching alone.  

This last week someone in the community passed away, but I couldn't bring myself to attend the funeral because it was under the same pavilion as yours.  I still have flashbacks to the service.  I can still feel how surreal it was that it was your funeral.  I can still remember staring at the fan blades just spinning around.  I don't remember much of being there, but some images still replay in my mind.  I just couldn't sit there unoccupied with my thoughts.  Aba went, he said the person pulled in about the same numbers as you.  He then visited you because people asked him to show them where you were located.

It is only my second round of this time of year without you, but I am already dreading the next 7 weeks until after your English birthday.  I would say I hope it goes by quickly, but that would be a lie because that just means more time between us.

Anyway baby girl.  I know you are the puppet master of my life right now, so I will do my best to let you control the strings even though it isn't easy.  I know you are with us wherever we are and I can't wait to eventually move in (after we remodel the kitchen and a bathroom) and unpack whatever we have left of yours. 

I love you so much and miss you tons!

Until next time. 

Love always!
The Mighty Contributor

Monday, December 13, 2021

97 weeks

Dear Sonzee, 

Last week your monthly letter fell around the weekly letter time so I skipped my first weekly letter in what would have been 96 weeks.  I am back at it this week with having what feels like an eternity since I last wrote you.  It has only been another week, bringing us to just 3 away from 100 Mondays without you.  The Mondays will always continue to pass us by.

This last week brought us a lot of hockey and goals for your brother.  A busy week in general and it was topped off with Laeya and I flying to New Jersey for a bat-mitzvah of one of her camp friends.  We flew in and out within 24 hours, but it was well worth the travel to see her smothered in hugs and smiles from her friends when she walked out of the car.  She is already looking forward to their next reunion.

This last week brought us another week closer to your deathaversary. No offense, but it comes at the worst time.  Well, I suppose it could be argued that it isn't the worst time because of it being around Laeya's birthday and then bat-mitzvah, that it really could just be a good distraction?  But I am anticipating my emotions to be on overdrive because of it all.  Trying to honor you both on the same weekend without taking away from either of you is definitely a challenge.

This last week brought us more questions from Noam.  I find it fascinating as he grows older how his understanding of death unfolds, but then we find ourselves fielding bombs of questions.  It feels equivalent to being on a minefield, each question coming at us randomly in an attack and leaving us wounded when it's over.  This week he asked us when you were going to be fixed, he wasn't happy with the first answer that you weren't being fixed, so aba settled the conversation by saying that you would be fixed when Mashiach comes.  Noam asked us why you died this week.  I told him among other things that Hashem wanted you and he excitedly replied that HaShem would fix you and then you could come back.  After the water in the bathtub drained he asked where it went and I told him it went into the pipes in the ground, and then he asked if that was the same place where you were.  I am happy he asks the questions, I am often stumped with forming my answers, and my heart often breaks having to retell him in different ways you won't be coming back.  

At times it feels like I have to make all my answers up as I go with him.  I myself don't really understand why you had to die, I don't really know where you are, and I have no idea if you have been fixed or will ever come back even with Mashiach.  Maybe one day I will have all the answers, but at week 97, this is the best I can do.

Anyway my love.  I miss you a lot!

Be safe and have fun.

Please come and visit.

Until next time.

Love always, 

The Mighty Contributor

Sunday, December 5, 2021

1 Year 10 Months

Dear Sonzee, 

Today marks one year, ten months, and two days.  I am sorry I didn't write to you on Friday, my brain didn't compute that it was already December 3.  It's hard to believe Saba has been gone for 2 years as of the 3rd, and that in just two months, your time will follow suit.  Oh, how I wish to know what you both have been up to over all of this time.

This month continued to be challenging.  I have done a really good job focusing on small increments of time passing me by, mainly by weeks.  Then this week I realized that as we get closer to February, it will be your 2nd anniversary.  Information I am well aware of when I process how much time has passed, but the reality that this is the 2nd time all these months have come and gone without you is just a lot for me to admit to my own brain.

This month brought me closure in some ways with me accepting that things are being orchestrated by you/Hashem.  Aba and I don't agree on which one of you is responsible, I say it is you, he says that your soul is so pure you are elevated to be with him and so it is one and the same.  Either way, I am allowing myself to acknowledge that everything has been divinely organized.  I realize that we need a fresh start with this whole moving forward concept and reality, so everything that you have done is making it so that is the case.

This month we said goodbye to Bianca.  I know that was part of your doing.  We know aba isn't at all upset over it, I am actually handling it really well.  I mean we buried you, so really an animal pales drastically in comparison.  I know she must be as happy as can be peeing all over piles of laundry and wherever the rainbow bridge took her.  I hope you were able to see her and Brucie.  I wonder if Brucie was thrilled to see her again?

This month brought me back to see your grave.  I still find it more challenging than it ever used to be, but I have been able to do it.  

This month I spoke about you more, and have shared you with others more often.  I did answer the question yesterday of how many children with "4", but that was honestly because I didn't feel this person should be privy to a detailed explanation.  A friend of mine actually said, "she has 4 here", and I quickly said "yup", and the person didn't catch the "here", and so it worked out beautifully.

This month I listened to my inner needs and told work I need to pull back a few hours.  I need to honor my grief and allow myself to sit with it and not keep running.  This month I have felt more blah, but also have acknowledged that that is ok.  This is my normal, this is life, this is what it is.  There is no escaping the weight and reality of you being gone, and that is ok.  It's hard, it's painful, but grieving you is just my love for you.

This month brought us bringing over your pacifier and glasses holder to the apartment as well as the two removable picture posters that have you on them. They are the only things on the walls in the apartment.  I was able to send your special tomato EIO pushchair to a CDKL5 sister of yours this month.  I was able to pack your Firefly GoTo seat to bring to East Valley FBC this week.  This month is allowing me to continue moving forward in a different way than clinging onto items that are just collecting dust.

Anyway baby girl.  Every month that passes without you here is another month you have taught me more valuable life lessons and proven to me just how strong I am.  This month was just one of the many more that I will spend in this life without having you to hold and kiss.  This month brings us just 2 months away from your English deathaversary, and only a month and 5 days from your Hebrew one.  

Until next time little bear!

Love always, 

The Mighty Contributor