143 weeks

Dear Sonzee, 

Hi baby girl!  How are you? (I feel like I haven't asked in so long).  Today marks 143 weeks that have passed without you here. That is a lot of Monday's.

Last week was spirit week at FBC. I missed mix matched day, but then got into the spirit mood for the rest of the week.  That included western day, 70s-day, and costume day.  It was fun!  We had Fall Fest, west valley went to the Swift offices and trick or treated and then had a cute setup at school with a fall theme.  It was so much fun to take the kiddos. One of our friends had her Tobii and it said, "trick or treat" and then went on repeat and it was the cutest thing.  All of our friends had a programmed switch of some sort that said, "trick or treat".  The entire time we walked the halls I was thinking about how the kids cannot eat most of the candy they were being given, but I guess it is the thought that counts? You used to love these school days!

Tzvi had a hockey tournament over the weekend. He played well overall, but the team definitely struggled.  They ended the weekend only winning one game.  I tried to tell Tzvi they don't always have to be all or none.  It is like they either win first or are in a consolation game, they need to work on that.

I did my first full week of working out! I did some competitions on my apple watch, and it was really motivating.

Yesterday, Noam and I went to visit you and bring you a lot of rocks. I still have more to paint for you, but we picked up some more rocks to take home to be sure to take care of that.  I also brought you the little ladybug that Mimi's mom sent for you and the gorilla soapstone I got for you while we were in Chicago.  I finally brought you, your first day of 2nd grade rock, which by the way still confuses me and makes me have to recount the years. The cemetery is so much fuller than it was 2.5 years ago. I know that makes sense, but it is just so weird to see. So many painted rocks now because of you. It is really nice to see.  Noam and I walked all around, with him asking me "who is here?" near the majority of the plots. He also was trying to grasp this whole under the ground thing, which he has been trying to do since he was 2. He asked, "Where is Sonzee in the ground", I said, "right here" and pointed to your stone. Then he asked how you got in the ground. I told him that the ground was dug up and then you went in. He then asked if you were sleeping and if it was dark. I told him yes, it is dark, and I am really unsure what you are doing. (It is the truth, and honestly, with his age and the whole death concept I worry that using sleeping will carry over to when he goes to sleep, and I don't want to go down that path.  It is similar to when he asks how you died and if you were sick, which is another word I refrain from using so he doesn't associate sickness with death.  It is tough for sure!) He also asked about your friends. It is hard to answer that because I assume you are with your friends, but I just don't know, so I say a lot of "I don't know buddy".

Anyway, November is tomorrow.  I cannot believe in 28 days, 3 years ago your brother turned 2 and in 28 days from today he will be older than you ever got to be.  Send me some extra love and signs this month please. I feel like I am already falling apart while I pretend to try and keep it together.

I love and miss you a lot!

Love always, 

Ema

142 weeks 1 day 10 hours and 25 minutes

Dear Sonzee, 

Another Monday and Tuesday. My heart continues to beat, but sometimes I wonder how it can with all the pain it feels. This last week brought your sisters and me to New York. I am still trying to recover from the red-eye flight and lack of sleep from all the late nights.  It was really nice for me as well as your sisters.  

New York was cold, but honestly, this morning in Phoenix was colder.  By the end of the day though I wore shorter sleeves walking to pick up your siblings in beautiful low 70-degree weather. Bear Pines is literally below freezing. I see snow for the first time on the 10-day forecast and it might align with our one weekend not currently sold in November, so I may have to jump on and block the dates. 

This week has me wondering more about what you might be up to and have been up to over the last 142 weeks. I wonder what you can't do because I am sure there isn't much.

This upcoming weekend is another tournament for Tzvi.  It is in Scottsdale and Laeya mentioned it has been a while since we have been to visit you so since we will be in the area we should go.  That is now the plan.  Maybe I will have some time to work on some more rocks for you. 

I started to work out this past week. I know, it is something we never thought I would do, but life has been filled with a lot of nevers. It actually came about because of you. As I was feeling extra down about things HopeKids sent an email about a free membership subscription to an online gym with workout classes. I took it as a sign from you and not only have I joined, but I am on day 2 of week 2 of my 8-week program and I am excited to see the end results. Thanks, baby girl!

We are getting closer to dates I have been dreading since you left, I will take all the signs you are able to send me because I am going to need a lot of them.  One month and 3 days until the little man turns 5, and 3 weeks and 5 days until he is 4 years 11 months, and 23 days. It is a mixture of happiness, sadness, fear, uncertainty, and gratefulness. Just come and sprinkle an extra dose of Sonzee strength dust on me these next few weeks, please.  Also, maybe pop into Laeya, she has been having a rough time lately and I am sure she could use a visit from you as well.

Anyway, little bear!  I love you and miss you so much! Come and visit, please!

Until next time. 

Love always, 

Ema

141 weeks and 3 days

Dear Sonzee, 

Another week and 2 days have passed. Another Monday (Tuesday, Wednesday, and soon Thursday) without you here.  The weeks are going by at the speed of light that is for sure.  This week brought us the last of the main fall holidays.  I went to Yizkor for you.  I lit a red candle for you and as usual, I missed you.  I have rocks I need to bring to you, but this was yet just another week I couldn't bring myself to go to you.  I want to go, but I just can't.  It feels like I am glued in place.  

This week brought us back to Phoenix from a week and a day in Chicago for Tzvi's hockey tournament and fall break. It was a nice vacation (minus your siblings constant bickering). 

These weeks are getting more tough as I anticipate dates to come.  We are within weeks of your brother aging you.  My heart hurts.  I can't bring myself to buy him a shirt or plan his birthday. (I know I will have to eventually plan-but not sure I can buy the 5 shirt). 

Tzvi's hockey teammates brother left for his make a wish trip today.  Seeing him wear the shirt brought me back. Different diagnosis, different experience, similar feelings. So happy he is getting the opportunity, but when your child qualifies for make a wish, there is a reason.  My heart aches for all of the families experiencing the balance of emotions.  Trying to be present in the here and now while scared of the future, and now, us, living this horrible nightmare of what became of our 4-year-old wish kid. 

I read a blog post from a mom who had twins, but one of the twins didn't make it.  Her words resonated with me completely.  The world assumes she is doing amazing because she celebrates the life of her living children, yet she is falling apart inside. I. can. relate. That is my life. My heart wants to explode from the aching. 

Anyway, tonight your sister(s) (shh-its a secret for one) are going to NY for the weekend.  Hope to see you in the sky!

Until next time.

Love always, 

Ema

139 weeks and 140 weeks and 1 day

Dear Sonzee, 

We have had a crazy two weeks so I figured I would compile it all into one letter to you. Yesterday marked 140 weeks since you left.  140 Monday's.  My mind finds it surreal.  Not just your death, but a lot of the time your life as well.  

Week 138-139 brought us Rosh Hashana.  The 3rd one without you here with us.  My heart doesn't really know how to comprehend all of these milestones.  It also brought a lot of choices for your clothing memory blanket between me and the lady who is quilting it all together.  I am excited and nervous for it to come together.  Shabbat prior to hitting 139 weeks found me curled up on the couch wrapped in the memory blanket someone from Smile on Seniors made for us.  It was the first time I did that.  I caught myself smelling the fabrics to see if maybe they smelled like you.  They didn't.  I feel like I am starting to forget your smells.  Maybe I shouldn't have washed all of your stuff and clothing?

Midway through week 139 brought us Yom Kippur.  Another one without you.  I didn't make it to say yizkor for you at shul. I did light a candle for you. I found myself again snuggled in your clothing blanket, which is becoming a wonderful comfort.  

Wednesday night found us going to a league hockey game for Tzvi. We were ahead the entire game and ended up tying with only 3.7 seconds left on the clock.  It was pretty rough, but at least it was a tie.  Thursday found us on a plane to Chicago for Tzvi's first out of state tournament of the season. 

It was an incredible weekend, filled with amazing laughs and moments and especially a first-place championship finish for the boys!  They deserved it!  They worked so hard and went undefeated the entire weekend. Your brother scored 2 goals in the final game, and I am sure you had something to do with that! (Thank you). 

We raced to close to downtown Chicago for the first days of Sukkot with 6 minutes to spare before candle lighting.  It has been a restful 2 days, and much needed considering Tzvi ended up running a fever Sunday night until this morning.  He stayed home sleeping during all of the meals we went out for.  He is thankfully feeling much better today. 

You were missed during our sukkot meals.  Last night brought us to a house that had a ramp.  I envisioned in another life pushing you up the ramp in your pink wheelchair.  For some reason neither aba nor I brought you up during the last two days.  I am torn on how that makes me feel in hindsight.  During the moment I didn't have the energy, and it turned out neither did he.  I just never know the right thing to do.  It feels as if we are trying to prove something by bringing you up, but when we don't bring you up it feels like we aren't being fair to you. It sucks. Maybe one day I will figure it all out.

Anyway, baby girl.  I miss you a lot! I love you beyond words!

Until next time.

Love always, 

Ema  

2 years 8 months

Dear Sonzee, 

Today is the third day of October. I am used to summer flying by so quickly, but since summer ended, I feel like this entire school year is going by in record time.  It makes the distance from you feel further, it makes squashing the panic harder. It makes reminding myself you actually existed harder.  It makes life after you that much harder.

Today at 1:08pm also marks 139 Monday's since you left.  The lump that brings into my throat makes it hard to swallow. I don't have to close my eyes to envision you in my lap with me running my fingers through your hair.  I can still see myself in a room filled with so many people trying to avoid making eye contact with them.  I can still feel your weight in my arms as I carried you for the last time down the hallway and placing you on the gurney in the front yard.  I can still remember the feeling of loss and confusion after I came back inside and paced around the kitchen island unsure what I should be doing, but, finding myself organizing while nurse Paige sat in silence writing her notes until she told me she had to leave because her nursing agency was making her.  I still remember your sister, who was 6 at the time, despite seeing you when you died and watching you leave, asking me when you and aba were coming home. I can and do remember it all.  Just like it all happened today.  But it didn't, it was 2 years and 8 months ago.

It is mentally hard without you here, it really is.  There are so many things that just do not make sense.  People ask me how many children I have and I can peppily report I have 5.  They ask how many boys and girls, and I can say 2 boys and 3 girls quick as can be.  I secretly love the astonished look on their face and relish in their exacerbated emphasis related to how busy I must be.  I can fake the smile while simultaneously thinking about how I am actually lying, rather, cheating.  But the reaction that comes when you have five children is much more rewarding than when you say you only have four.  

This last month has allowed aba and I to come to terms with understanding that no matter what, we will always be missing the physical you.  Despite us wanting to be parents to five live children, even if we did, then we should be parents to six. There won't ever be a way to catch up. There wouldn't ever be an end.  We are enjoying this season of parenting older kids, despite how crazy and active it is with all of your siblings' activities and schedules.  The freedom to just go away and be able to plan is not taken for granted. We know how lucky we are.  

I often wonder where you would have fit into this season.  I sometimes wonder how this season would be different. I wonder who would have suffered the most.  I try not to stay in those thoughts for long.  They don't serve me well and there is no point.  The guilt should have been put to rest with you.  Clearly, 2 years and 8 months later it proves it hasn't.  

This month has been hard, but I know the next two will be harder.  I hope you are enjoying your 2 years and 8 months of freedom.  I hope this month taught you something new and gave you a new skill. I hope you have only had happy moments and incredible times since you have entered into your new world. You are missed here more than you will ever know.

Until next time baby girl!

Love always,

Ema

Wishes

I laid in bed on Friday night and turned to see what time it was. 11:12pm, my mind said, "a minute ago was 11:11, make a wish", which immediately took me down an Alice in Wonderland rabbit hole with a million flashes in a matter of seconds. It started with thinking about the types of wishes that happen over a lifetime.  When I was a teenager, it was for a specific boy to like me or to make homecoming court. It would turn into wishing to get into specific colleges or an abundance of trivial things. Then life actually started to happen. My world no longer filled with naive requests, the childhood notion of wishing when all the digits on the clock are the same became filled with actual life or death requests. Right now, a hockey family waiting on results of scans to learn if their son is cancer free so I wish for NED (no evidence of disease), a few years ago I wished that Sonzee would die peacefully, for years before that I would wish that her seizures would stop, and that she would stop suffering, not specifically requesting how that would happen. 

So many of the same digits have and will continue to present themselves across clocks and there are wishes I am no longer able to wish for. I no longer have to wish for the suffering to end.  I no longer have to wish for her pain to stop.  I no longer have to wish for her siblings lives to be more normal.  I no longer have to wish for me to stop living my life torn between life in a hospital and the life occurring without me at home.  I no longer have to wish for her life to be better, for her to receive a cure, for her to have never been born with such a horrible genetic mutation.  My heart literally aches at the full 360 that my innocent clock wishes have taken.  My eyes fill with tears that I had to make all the wishes that I did and that I had to literally wish and pray for a life to end, more than once. But, like my 12-year-old mentioned to me, "there are worse things than dying, you know like suffering, like Sonzee did".