Monday, February 21, 2022

107 weeks

Dear Sonzee, 

Another week, 107 to be exact.  They just keep flying by.  Amazing how they say time flies when you are having fun because really, time also flies when you don't want it to.  This week was a tough week for your siblings.  Laeya and Noam both had some challenges in the grief department.  It breaks my already broken heart more when they miss you and hurt because of your absence.  It is unfair.  Laeya keeps her feelings locked up for the majority of the time, it makes me relieved when she lets it out because I know firsthand how horrible it is when the emotions are pushed down.  Noam is still figuring out life, and I find his journey still to be the most fascinating to watch unfold.  He can articulate his feelings now in a way he couldn't when you died.  It is definitely a double-edged sword.

Laeya told me you have been visiting her a lot, but you asked her not to tell me.  Sorry, it just happened to come out.  She said you didn't want me to be upset.  I asked her why you won't visit me, and she said because you know I am not ready.  I can't argue with your logic, but I worry I won't ever be and 2 years already feels like an eternity.  Will I even recognize you when you feel I am ready? What if I don't know it is you? How can I make myself ready?  I have to trust that you will come to me when you feel it is in both of our best interests, but it is really hard to have that blind faith.  I shouldn't find it surprising you are still having me trust in something I have no control over, but I am rolling my eyes at you for that being the case.

This week we got back into the groove of construction on the new house.  We had taken all of the crew to finish 19th street and it finally happened!  Wahoo!  I finalized the pebble-tec color and new pool tiles and am really excited for that to come together.  The wall separating the kitchen and the other area was completely removed and it looks amazing.  All of the appliances have been ordered, but won't be in stock until the end of April.  That gives us a lot of time to get all the new plumbing taken care of with the extra sinks in the kitchen, and all of the changes we are making to the laundry room, pool bathroom, and master bathroom.  The door from the garage into the house was sealed up and now the only entrance is through the mudroom.  It is really exciting to see it all start to come together! We picked the house colors and anyone who knows you will know all the inspiration was from you.

Your brother has had a tournament all weekend.  It hasn't gone as great as we would have hoped, but he is still having fun.  We signed him up for a week program this summer, so he and aba will go to Bear Pines for a week and I think I am going to tackle driving to NY with the girls and Noam myself.  It will be stretched out so we won't have to drive much each day and I think it will be a lot of fun. Although I hope your little brother learns to like another movie besides The Bee movie because I don't know if I can handle that for 36 driving hours.

Anyway baby girl.  I love and miss you!!!

Until next time.

Love always, 
Ema

The Mighty Contributor

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


The Mighty Contributor

Tuesday, February 15, 2022

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
The Mighty Contributor

Monday, February 7, 2022

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
The Mighty Contributor

Sunday, February 6, 2022

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 hopeHope 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. 

The Mighty Contributor

Thursday, February 3, 2022

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 22 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


The Mighty Contributor