103 weeks

Dear Sonzee, 

What a week it has been!  This week we celebrated your sister turning 12 and becoming a bat-mitzvah.  Her party was planned to be at FBC so we could simultaneously give honor to you without taking away from her.  It was a blast, minus that we couldn't get the backroom lights to fully turn off, so some light came through the glass walls.  It was perfect besides that and everyone had a blast.  Aba's speech made me tear up, but I was standing towards the side so I think it went unnoticed.  I feel proud of myself for the foresight of knowing how it could go so I recorded my speech, and that was brilliant.

Your sister wanted to honor you in an extra special way so she asked us to have pictures of you and her and your Rifton chair.  I bought one of those frames that change pictures and figured as a bonus in the new house it will hang by your chair on the wall.  I only doubted my placement of it, I hope people saw it by the rock wall.  I wanted it out of the way so it wasn't played with, but noticed, I hope it was successful.

It was a great week with so many out-of-town guests.  We ended the week by going up to Bear Pines with everyone and having an amazing weekend.  Thanks for bringing us the snow since it wasn't initially forecasted and then it happened.  

The worst part of last week, as I am sure you already know, was that Coach Ed died.  I hope he is giving you swim lessons, maybe you will resume your Wednesday time slot?  Our hearts are broken.  Aba and I will hopefully attend his funeral this week.  Aba still talks about the bear hug he gave him at your funeral.  It is just impossible to comprehend.  It just seems insane to me, no one knew that 101 weeks and 6 days after you died, he would follow suit.  Life is I don't know what?!

Anyway baby girl.  I hope you have a great week. It's your turn to show Coach Ed the ropes, have fun swimming!  Love and miss you!

Until next time.

Love always,

Ema

101 & 102 weeks

Dear Sonzee, 

Hi, baby girl.  I am sorry it has taken me 13 days to write to you and that I missed week 101.  It happened to be that week 101 also fell on your Hebrew deathaversary date and I just didn't have the strength to send you a letter.  We went to your grave and aba said kaddish for you with a minyan, and that was hard enough for me.  I had plenty of support there and I felt all your breezes, but it was a tough day.  The week leading up to it wasn't any better, and it has taken me another week to start to climb out of the dark hole. (Just enough time for the emotional roller coaster to continue with your sister's 12th birthday, which is also exactly 2 years from the day your body began to fail you, and then it will be her bat-mitzvah.)  I am filled with mixed emotions as I mentally attempt to prepare for a set of family pictures without you, and a milestone event you won't physically be present at. To make matters worse I am trying to push the guilt away that I feel for when I prayed to Hashem for him to take you before your sister turned 12 so she wouldn't have to sit shiva for you.  I never wanted you gone, but I knew it was inevitable and I didn't want your sister to have to be thrown into true adulthood so quickly.  It still hurts me to my core I was faced with having to think about any of that.

These last two weeks have been filled with preparing for your sister's special day, praying illness doesn't plague any of us, family, or her friends, and trying to make it through every day without you.  It hasn't gotten any easier.  At the most recent grief group, I mentioned how challenging year two has been, and someone in year 3-4 said it's all about the same from here.  The first year is filled with so much denial that some of the times pass without really processing the reality, but then year two slaps you in the face with the reality that this is forever, you won't ever be coming back.  A fact that is obvious, and in my face daily, but just so factual it brings a consistent state of panic.  This is forever.  The hole in my heart is forever.  The pain is forever.  The reality of you being gone is forever.  It is all forever.

I am so angry.  I hate feeling angry, but it just is what it is.  It is a tense feeling, and the worst part is that it isn't directed at anyone or anything specific, just life.  Just the fact that you aren't here and we are missing out on having you here.  It sucks!  It makes me angry that I don't know where you are, or who you are with. It makes me angry you aren't here and we don't have a physical family of 7 anymore.  It makes me angry that you were born with a genetic disorder that we had zero knowledge about and that it was completely undetectable until after you were born.  We had no insider information, we were just left to be blissfully unaware until reality smacked us in the face...and since 2015 it hasn't quite stopped.

This last week your brother had a hockey tournament.  His team played up a division, I can tell you were clearly enjoying your holiday weekend elsewhere, hate to remind you but you are supposed to come and help!  Anyway, it didn't go very well, but as always he had fun, so there is that.  His next tournament is on your birthday weekend if you have any desire to join us in the negative freezing temperatures of North Dakota, please do (there is sure to be a huge breeze). 

Over the last two weeks, someone in our new neighborhood reported our work on the new house for being unpermitted.  Little do they know how many projects your father and I have completed over the last 13.5 years, so it took less than the amount of time it took for the city to put the red tag on the house from the date of the complaint for us to hang up the building permit.  We were pretty proud of ourselves for that accomplishment, and honestly, I am now really excited about this project.  I cannot wait until it is fully finished.  I wish we had a room for you and all of your stuff, but I know having all your stuff throughout the house is how it is meant to be, despite how painful it will be on some days to see the reality of you gone.

Anyway little bear, I hope you have a great week ahead.  If you could add a protective layer of health to our house and all of our potential guests this week and weekend that would be greatly appreciated.  I miss you beyond words and hope you are doing well and staying healthy. I miss you lots!

Until next time.

Love always,

Ema

1 year 11 months

Dear Sonzee, 

Today marks 11 months that have gone by during year 2 of your absence.  One more month and we will complete 2 full years and start into year 3.  I have to admit the sparkle/shiny rock theme was a much better idea in my mind, I am sorry for how ugly most of your monthly rocks turned out.  I was going to give it up, but for year 3 your sisters and I came up with a better idea.

This month I delivered you a bunch of well overdue rocks, and even a new one to mark the new house.  I am sure I am still missing some, but I am doing my best to play catch up.  I walked around the cemetery for the first time in a while during this month and noticed how many people have been inspired by our painted rocks to you.  My initial reaction following the first months of your death was anger, but for some reason, now, almost 2 years later, it makes me smile knowing everyone got that idea from visiting your home.  It really is all due to Mrs. Penny, so be sure to tell Harper her mother is amazing!

This month I continued on the yo-yo of emotions that your death has brought. I have been becoming more open to accepting the concept that your stuff didn't define you, it is just your stuff, and letting it go doesn't have any relation to you specifically.  As I see your limited number of boxes in the new house representing what we have left of you, the struggle is so real.  I know you are with me in my heart and mind. At least I continue to say that over and over again.

This month I still felt like I was constantly on edge, the nagging feeling in the pit of my stomach, the tears a blink away, the anxiety.  I think it is just the anticipation of the next 5 weeks.  I know sometimes they say the build-up can be worse, but this isn't round one for me.  I know by your English birthday in a month and 8 days, I will be completely emotionally spent.  On one hand, I suppose I should thank you for lumping all these dates close together, on the other hand, I wonder if this is some "see how long you can hold your breath and survive" challenge.  

This month we secured our summer home.  For the first time since we began our summers in VV, we will be renting down by the lake and we will be staying the entire summer.  I am guessing you played a role in this change.  I consider it more of your hand in having us move forward.  While it will be different, last summer was brutal, and it is like our house here in Phoenix, it is time to let TH #49 go.

As I close out my last monthly letter to you of year 2, I want you to know (in case you might ever doubt it) I love you the same since you have been gone.  I miss you more than I did 1 year and 10 months ago and I can only assume as the distance grows, that will continue to be the case. I hope you are planning something spectacular for all of your upcoming Sonzee Stones.

Love you!

Until next time.

Love always, 

Ema

100 weeks

Dear Sonzee, 

Today at 1:08pm (AZ time) it will have been 100 weeks.  100 Mondays since I held you.  It also happens to be 23 months today, just one more month on the secular calendar until another February 3, but I will save that for another post.

100 weeks.  I wonder what that sounds like to others?  Is the number considered big or small in the land of grief?  Will people stop saying to me, "oh that wasn't so long ago"?  Will people tell me, "oh it's been a while"?  I am still afraid of what people might end up telling me.  As it is when people make the gasping sound after hearing of your loss I haven't quite mastered being comfortable, I just nod my head and keep talking while they go on to say how hard it is, or how they couldn't imagine.  (PS: They all can, that's why they all say they can't.  They can imagine it, it's just too painful so they don't want to).  I get it, it is horribly painful. I didn't want to imagine it either when you were alive, despite knowing that one day I wouldn't have to imagine it, I would have to live it.  What I want to tell everyone who says that is, oh don't worry, it is far worse than you could imagine if you allowed yourself to attempt to imagine it. 

100 weeks without you.  The continuous proof that life goes on and a mother's heart can still beat after her child's stops.

This last week real construction started at the new house. Did I tell you one of the guys working also buried a child, his son.  Lately, I find it fascinating (for a lack of a better word) just how many grieving parents are walking around without anyone knowing.  I think the most comforting part is watching all these parents be normal, the same way I pretend to be, but then when we start to talk about our deceased children we immediately allow our tears to flow and we reach out for a hug because we get it all. We understand the fakeness of our lives, the walls we put up just to make it through the day, and we understand the need to be real for a moment in the company of others who require zero explanation.

This last week winter break came to an end and we closed out an entire year.  I spent the majority of the weekend and the few days before it trying to pump myself up to return to work.  I am unsure if it is just the typical challenge of having to pump oneself up to return to work after a break, or if it is my brain knowing the likely struggle with the dates that lay ahead and its lack of desire to deal with anything?  Maybe it is a combination of both?

Yesterday Auntie A took pictures of Laeya for her Bat-Mitzvah.  I cannot believe she will be turning 12 and we will be celebrating that milestone (mixed in between all of your important dates).  I hope you can come and visit, I know she misses you a lot and she would love for you to come.

Anyway baby girl.  I love you and miss you!  Happy 100 weeks of running, dancing, talking, singing, yelling, cheering, swimming, skipping, jumping, and whatever else you have learned you loved to do freely!

Until next time.

Love always, 

Ema

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.