Sonzee "turns" 7

Dear Sonzee Bear, 

It has been 9 days since you should've? would've? could've? but didn't turn 7.  It has taken me 9 days to be able to sit down and reflect on the fact that another, your 3rd to be precise, birthday has passed here on earth without you to celebrate.  I will forever find February 11 one of those dates that just doesn't make sense.  How could it?  It is your day of birth, a day to honor you, a day to celebrate you coming into this world...but you aren't here anymore, so I don't really understand what to do.  I don't really understand how to best approach it.  While I know there are various schools of thought on how to celebrate or honor the day, nothing has quite felt right for us; maybe it will happen with time? 

I found myself this year not even able to decorate your grave and not even able to visit it because I was with Tzvi in North Dakota.  I was able to sift through my emotions and at least push the guilt of that aside.  After all, the decorations are really just for me, and I don't need to go to North Scottsdale if I want to talk to you or see you.  It is really hard to believe all that, but deep down I know it to be true.  There is still this immense suffocating grief life guilt that is nearly impossible to navigate.  I tell myself that you have siblings who are alive, who need me now, but that makes me angry that it's the truth.  I remind myself that I won't parent you the same way I do your siblings nor the way I once did.  That is just an ugly reality, I get it, both parts, the ugly and the reality.  It still hurts. It still doesn't make me feel any better,  It doesn't help the self-imposed motherly guilt that comes because you won't ever not be my child and I will forever feel like you are being slighted. 

I will say for the third time, I am sorry we didn't do anything for you on your birthday.  I hope all of your friends threw you one incredible party.  I hope saba was able to come.  I hope you ate ice cream, whipped cream, and as much cake as you wanted.  I hope you danced around and celebrated in whatever way you wanted.  I hope you are enjoying another year free, but I still will always wish I could be there with you.  I wish I could sing happy birthday to you and watch you blow out candles or in the reality that we lived, watch your siblings blow them out for you while you pressed a switch of some sort or used your eye gaze to indicate whatever you wanted to let us know.

Maybe next year I will be able to tackle this grieving a bit better and be on top of your birthday and all of the other challenging dates that face me in January and February.  Maybe.  No promises though.  I am sorry.

I wish for you an incredible year of you being 7.  Wherever you are, with all of your friends, doing whatever you want.  I am sure you are as beautiful as ever!  I love you my forever in my mind little 4-year-old princess who is now 7.

Until next time.

Love always, 

Ema

106 weeks

Dear Sonzee, 

Firstly, I am sorry I am behind on all my letters to you.  This last week felt like a physical eternity because of your brother's hockey excursion to Fargo, ND.  He and I left Wednesday, and it turned into one insane journey.  We got removed from the plane because of weight and weather issues in Fargo paired with no one volunteering at the gate because everyone going to Fargo had to be there for the tournament.  The lady was the rudest lady ever and claimed us and another hockey family volunteered to give up our seats.  Yes, they gave us vouchers, but no, we did not volunteer.  In the end the 2 mom's and 3 boys I am sure really tipped the scales for weight. The joke of it all, is that they still took our bags, except for your brother's hockey sticks who went on a different journey themselves. 

Friday was a mental struggle for me. I am glad Tzvi scored a goal, maybe subconsciously it was his birthday present for you?  I can at least tell myself that.  A few parents came over to me to tell me happy birthday for you.  Otherwise, I wore my balloon leggings in your honor and just continued through the day.  It is a tough day to be honest.  I wonder what you did for your 7th birthday, but I also wonder how it is you would be 7.  I just can't even picture how you would have changed and what you might have been doing.  Would you have finally started to sit this year? Would you have mastered that skill at 5 and this year taken your first steps?  I am just left with wonder.

The rest of the weekend went by, freezingly.  I have never experienced -30 and lower temps, but now I can say I have.  The negative temps aren't even that bad honestly, but the windchill is something else.  SO COLD! I now have a new respect for heated seats and windchill temperatures.  The boys struggled in their Sunday morning game and sadly lost their chance at playing in the championship game.  I would have loved that experience for Tzvi, but in the end leaving on a winning note with 3rd place out of 80 teams is nothing to be upset about.  

This week your organization provided a wheelchair for someone in need. I love that we have the ability to do that, and it will have your CDKL5 sticker on the back to continue to spread awareness to everyone who sees it. Continuing to do big things my little bear!

Anyway, baby girl. I owe you a birthday post and it will be coming your way!!  Love and miss you!  Have a great week!

Until next time. 

Love always.

Ema

105 weeks

Dear Sonzee, 

This last week was tough.  It's hard to believe but yet not that another entire year has passed without you here.  Today marks the first week into year #3.  There was a lot to deal with emotionally this last week and it'll just follow forward.  My goal for Thursday was to get out of bed, so I was able to meet that goal by 7am.  I considered the day a win.  I brought you a soapstone owl.  Laeya helped decide that one.  I still need to paint all your rocks, but I have 5 of them sitting at home waiting for some color.

Last week a few of your siblings had 24 hours of cold symptoms.  I still being my panic spiral concerned someone is going to die whenever something enters our home, but I can usually get off the ledge with some assistance.  It isn't the true panic that I used to have with you, it is more my anxiety and my brain trying to convince me that something awful is going to occur and I am going to have to bury someone else next to you.  I had a sore throat and lost my mind.  If only I could regulate my brain to not jump to the worst conclusions.  It is really hard, but even more so during these weeks of intense grief.  (Which will be coming to a yield in just 4 days).

This last week should've started birthday week for you.  I have yet to fully figure out how to do that without you here.  It still doesn't make sense to have a day to celebrate another year of someone who cannot be here to celebrate it.  It is a challenge to comprehend this will be our 3rd time.  I cannot believe you would be turning 7.  Again, you are still 4.

Yesterday your brother had a hockey game.  They didn't win but honestly played amazing.  Thank you for helping him out to score that goal!  I told aba last night that right before it happened I asked you to help him out and give him a goal.  It is the 2nd time I have truly requested your assistance, and I appreciate that you helped him out.  When it happened it brought me such immense joy for him, to see how excited and proud of himself he was, and also made me give you a nod!  I appreciate it when you take the time to join his games.  (Don't forget, Fargo, this weekend, really cold, lots of games, would love to win some!).

Anyway baby girl. I am going to run!  I miss you!!

Until next time. 

Love always!

Ema

Scars

Just about every day of the week I find myself driving past Phoenix Children's Hospital.  I always take a moment to silently nod my head.  Occasionally quick flashbacks of one of the many times we lived in the hospital will pop into my mind.  More often than not I can shake them out of my mind and continue on with life.  Except for a week ago when a brother one of our oldest son's hockey teammates was diagnosed with cancer and despite it being a completely different journey, and a completely different world I am brought right back to our old life.  

As I drive by the hospital my mind now pauses and thinks about the family that now sits a floor below our old home creating their new home.  Thinking back to all the times I walked the halls and shared the elevators with others sporting a bright orange bracelet.  A sort of comradery in a world of chaos, but yet it is now a feeling of panic drowned with an extreme weight of grief.  My heart is broken for the familiarity in our parallel stories with the knowledge of similar feelings and experiences, yet distanced by the fact that our journeys will forever be different.  Fear of where their journey might lead them based on where ours went, hope that theirs will be different, and fighting to constantly remind myself this battle is no longer ours.

Time can forever pass, but the scars from the trauma will never fully heal.  They are sometimes hidden from the outside world, but can easily be freshly exposed.  It's a deep-rooted knowledge of what really goes on behind the room doors at 1919 E Thomas Road.  It is life once lived where everything was done to protect your child, but yet it feels impossible, and the world doesn't understand enough, yet some will try.  It is a fear of illness plaguing your house mixed with trying to balance the quality of life for every member of the family.  It is trying to wrestle with your darkest fears while keeping hope.  Hope that feels like it is taunting as it starts out strong and becomes quickly watered down and forever altered to have various meanings.  It is a constant state of fight or flight and an inability to talk yourself off the ledge.  

Life will always continue to move forward, but so will the scars. 

Two Years

Dear Sonzee, 

Today marks 732 days since you left our physical presence. It feels like an entirely different lifetime ago because that is exactly what it has been. An entire 2 years that didn't include you with us.  An entire 2 years that we have had to learn how to be a normal family, a task I am unsure we will ever accomplish.  It has been 104 weeks and 4 days learning to navigate being a family that used to have a child with special needs.  It has been 2 years of no longer having to keep a hospital bag packed (although I never unpacked it, even after the flood). Two years that we have no longer needed to coordinate vacations and weekends around nursing schedules, planned admissions, and random 100.4-degree unexpected fevers.  It has been two years not counting seconds and minutes while you seized, two years of no gj tube changes, no central line challenges, and no arguing with insurance companies.  For two years, we have driven by Phoenix Children's Hospital and have not been admitted to the 8th floor with you.

I wish today would mark some finality of the situation, but it doesn't, in fact, it is the opposite.  Today, February 3 marks the end of another 365 days and the beginning of another 365 days that will pass me by without you here.  A day that will forever be the worst day of my life, but yet (what I imagine to be) your best.  How unfair it is that I cannot be there to cheer you on and celebrate all of the Sonzeestones you have finally had the opportunity to accomplish.  I hope you have someone cheering you on front and center, and that you feel the cheers that I promise I would have for you if I knew about what was going on.  I absolutely hate that I have missed out on 2 years of whatever it is you have become and been able to do.  I think that is probably the cruelest part of this all.  We all miss out on life with you and being able to celebrate with you.

For the last two years, countless people have said they couldn't imagine the situations we have had to experience, especially us having to bury you.  I sometimes wonder myself how I have lived through it because I cannot imagine it either.  For four years 11 months and 23 days we lived an insanely unimaginable life, and since you left, we continue to live the life that every family fears they could be.

I am still trying to figure out who I am with the pieces of me that were left here without you.  I anticipate it will take a minimum of two more years to even start to sort that out.  What I know is that it will pass me by with a lengthy blink of the eye, and I will be left wondering how it has been so long but yet still feels like yesterday that you were being held in my arms.  I am thankful, at year two I can still feel you in my arms, and feel the softness of your cheek against mine.  I am so thankful that at two years I can still remember all of the details of the exact moment I last saw you forever.  

My Sonzee bear, it has been 732 days since you were last here with us physically, and missing you is an understatement, but there has not been a moment in the last 732 days that we have not carried you in our hearts and minds.  No matter the number of tears that fall from my eyes because of how much I miss you, I want you to celebrate this day.  Two years ago today you were given freedom, a gift I never could give you.  So please celebrate doing everything you are now able to do (and if that includes coming and visiting me for the first time in 2 years, that would be greatly appreciated.

Until next time my little bear!!!

I Love you and miss you so so much!

Love always.

Ema

104 weeks

Dear Sonzee, 

Today at 1:08pm it will have been 104 weeks since you left us.  Today, 2 years ago was the very last Monday you were here with us physically.  You spent slightly more than half that Monday with us, but the details are still crystal clear all of your last 13 hours and 8 minutes of your life.  In fact, the worst hours of my life were living through your last 48.  I won't say I wish I didn't remember them as vividly, because G-d forbid I ever can't, but no one, especially no parent, should have to watch their child die.  I sometimes wonder what was worse, watching you struggle all of your life, or watching you die.  Sometimes the answer isn't so clear, but watching you die was absolutely horrific and a trauma I won't ever be able to recover from.

This last week your swing was either mistaken for bulk pickup or stolen from the front yard of the new house.  I spent a good portion of Saturday after finding out feeling numb with a mixture of telling myself "it's ok, it's just another piece of stuff".  I wondered if maybe you are really trying to catapult me forward by removing every last trace of your existence?  I am torn between truly believing this is some sort of sign from you or throwing all of my belief in that idea out of the window and just saying f-it, some things are just unfair, suck, and there is no trying to make lemonade out of it!?!?!?  I just don't understand why that had to be taken off our driveway.  I don't understand why I have to continue to lose pieces of you without warning.  To add insult to injury, the new landscaping guys threw out your solar flowers.  At this point, I am throwing my hands up and quitting (while I go to amazon and buy more),

This last week was the first of the beginning of my 3rd year on the inpatient/outpatient PCH PFAC.  I am the parent mentor this year.  I am thankful that throughout your death I have still been able to remain part of PCH in some fashion.  Although, honestly, despite sitting on the committee, I often feel out of place.  I feel like a stranger to a place that was once my home.  It has been over 2 years since I stepped foot into an inpatient room.  It has been over 2 years since I sat in a triage room in the waiting room.  I feel as if my experiences are so distant.  The hospital has come a long way and I am grateful to be in a front-row seat, but I am also feeling after this year I will be ready to hang up my hat and move in another direction. 

I suppose the beauty in counting the weeks is that they aren't just numbers that pass me by.  They are baby steps to moving forward on this unknown journey without you.  The journey you started me on and continue to help me move with.  It hasn't been an easy 104 weeks, and I know the word easy won't ever be one I use in terms of my grief, but the fact that I have continued to push forward without you is definitely celebratory (although it doesn't feel party-worthy).  As we close out another week and finish the last day of the last full month you ever lived I love and miss you more than I could ever have imagined.  104 weeks of a gaping hole with nothing that comes close to filling the dead space.  I can only continue to hope and pray that you have experienced the complete opposite 104 weeks filled with incredible journeys, endless parties, amazing accomplishments, and that all of your earthly constraints have been lifted.  I hope that you are truly at peace baby girl because you deserve it!

Until next time.

Love always, 

Ema

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