119 & 120 weeks and 2 days

Dear Sonzee, 

I am so beyond sorry that over 2 weeks have passed since my last letter to you.  In fact, it has been exactly 14 days since my previous blog post.  No excuses, just the days get away from me and the grief exhaustion weighs down the typical day-to-day life exhaustion and here we are...2 weeks since.

119 weeks was filled with so many work meetings and progress reporting. That paired with the typical chauffeur services for your siblings with all of their activities and attempting to get things done with the new house. It finished with me helping with sizing at the hockey rink for the older kids' hockey tryout weekend.

120 weeks wrapped up another year for me at FBC.  With that, your sisters and I went to NY for the weekend for Meira's bat mitzvah.  You were missed and mentioned a multitude of times.  It is always a great time in NY for me.  It was a beautiful Simcha and we all loved seeing our friends (and uncle and Hay Hay). I feel like I am living the luckiest life, having friends and family in NY that I get to see over the summer and during events, and then the same in Arizona.  We got home late Sunday night after a slight hold-up on the plane in JFK.  We did learn however that it is your brother with the bad flying luck, as everything went smoothly in the grand scheme of things. 

As I age my memory seems to be fading a bit so I think I touched on the most important aspects of the last 2 weeks.  Construction continues on and I dare say I see the end in sight. We miss you a lot and love you more!

Until next time.

Love always, 

Ema

Does Time Heal?

Yesterday our youngest had his cast removed from his hand.  He fractured the third metacarpal 3 weeks and 2 days ago and had the cast for 3 weeks.  When the doctor looked at the x-ray she couldn't even tell where the fracture had been.  It was completely healed, in just three weeks.

Over the weekend Sam and I were asked if we felt that time has healed us.  Sam gave his answer, but due to the timing of the question I wasn't able to, and then the opportunity never came back.  I was thankful because honestly there wasn't enough time for me to formulate my response.  So many thoughts have crossed my mind as an answer because it isn't so simple, at least not for me.

Today marks 2 years 3 months and 7 days since Sonzee died.  I feel like my world has changed more times than I can count since that day and in so many ways.  There is healing in terms of our home life is more stable.  We don't have to change plans at the drop of a hat due to a last-minute hospitalization.  We don't have to keep a hospital bag packed and ready to go in an emergency.  The crack that was created due to the chaos of CDKL5 has healed itself to 80%, which was equivalent to when Sonzee's middle sister had her cast removed from her elbow after fracturing it in 2 places.  We were told with use it would eventually reach 100%.  

There is a comfort in knowing Sonzee is in a far better place than we could provide for her in some ways.  She is free from being trapped inside her body, she can communicate in the truest form of total communication.  She can run freely and do whatever it is she wants to do (I hope within reason for a 7-year-old).  She is whole, she has zero scars or remnants from the seizing body she was stuck inside of. She is healed beyond any fracture that could be placed into a cast.  

My heart endured its true first break in April 2015 when we were given Sonzee's CDKL5 diagnosis.  I don't think there is a potential to ever truly heal from the scars that were left from watching her seize thousands of times during her life. I think it is beyond impossible to heal from the damage that was done to my body as I lived with anticipatory grief and watched her straddle the worlds of life and death more times than any parent should.  I think there is no healing from watching her siblings have to live the life of a special needs sibling only to have the title change to bereaved sibling.  There won't ever be true healing from having to access her port, draw her labs, administer meds, handle her feeds, and essentially play nurse more than I did mom over her 4 years 11 months, and 23 days of life.

I don't consider healing to be an option when for 15 days I watched her body reject foods and fluids.  For 15 days I watched her body shut down, in a way that forced my mind to think awful thoughts no parent should have to think.  For 36 hours I had to watch her as her heart continued to beat but it was clear she was no longer in her body.  Then similarly to her birth where one minute she wasn't here and then was, one minute, she was here and then wasn't.  

2 years 3 months and 10 days ago she left this world and I have spent every day since trying to manage how to exist in a world that continues on without her and without the world of special needs.  I am truly at peace that I no longer live in that world, but the scars from that life are easy to uncover in a split second.  In the last 2 years 3 months and 10 days I have found comfort and discomfort by doing the same things at different times.  Life has become more about making sure every day I allow myself grace to survive.  

Time has done a lot of things since 2015 and 2020.  It has allowed for some amazing incredible moments and some truly devastating life-altering events.  As far as healing, I think it should just be left to broken bones.

118 weeks

Dear Sonzee, 

Another week down, an eternity for me to go.  This last week I went with your little brother to see Blippi live.  It sounds as horrible as you can imagine, but I did learn that there are kosher alcoholic beverages available at children's events (Thank you g-d).  The only challenge was finishing it before the show began.  Noam appeared to have enjoyed it with one of his besties and thankfully his mom is one of mine, so it made it as enjoyable as it could be.  While we were there I couldn't help but notice the little boy being pushed by his father in a wheelchair. After I smiled at them and walked by I thought about how I didn't know if you ever loved any specific character or show that you would have liked to see in person?  Did I never offer you the opportunity?  Did you just not care enough?  Is it solely because baby #5 watches shows and the rest of you I was more strict on tv time?  I doubt that's the case Tzvi loved Chuggington, Laeya was obsessed with Angelina ballerina, and Meena loved whatever Laeya loved.  Maybe it was because we spent so much time absorbed with your medical needs I never took the time to figure out which character would have been your favorite?  After all of those thoughts as we walked to our seats I saw the section that would have been for us, up at the top with the fold-out chairs so we could move them to the side to get your wheelchair in.  Truthfully, maybe it was just because of your CVI that we weren't able to figure it all out?

The school year for FBC is quickly coming to a close.  I have been swamped with IEPs, MET2s, and transition meetings.  I am looking forward to summer being just 8 school days away.  I am sure despite "all of the time" I will theoretically have over summer will fly by without me getting anything done, but here is to hoping.

Last week we all went to grief group for the first time in literally years.  I always enjoy going, but Tzvi typically has hockey so the boys don't get to come.  I think it is good for your siblings, but of course, they say they don't need it.  They end up enjoying it when they do go though.  It was Noam's first time being old enough to attend.  It appeared he enjoyed himself.  He and Meena made me handprint pot holders, amazingly, they were red. 

We are another week closer to construction being over. I (think) I am ready to set up your space, so I am eager for that part of the kitchen to be finished already.

Ok baby girl. I hope you have a great week with your friends!

Until next time.

Love always, 

Ema

2 years 3 months and 5 days

Dear Sonzee, 

I am sorry I am 5 days behind the 3rd of the month.  Different than last month, this month I had planned on writing to you, but life got in the way.  It makes me cringe to write that, but it is the sad and honest reality.  This last month I found myself attempting to carefully balance the beam of grief only to fall off a few times. It is so much different than when I used to walk the tightrope while you were alive.  There was panic every time I was on that rope, and that rope was tied to the tops of skyscraper buildings with nothing but 1000s of feet below.  The grief beam is a bit thicker on the sides, is only 5ft or so off the ground, and has mats when I fall.  It still sucks, but it's not nearly the same, probably because I have already fallen 1000s of feet.

This month continued to bring me the reality that life without you is permanent, but I am getting better at handling that.  Or maybe it is just that I have mastered the art of ignoring the nagging feeling that enters my chest when that fact throws itself into my face.  This month I continued to disconnect myself from some parts of life that related to you.  It isn't because I don't want to honor those parts of life with you, it is that I acknowledge how hard it would be and I also am giving myself permission to allow myself the space.  For the first time in close to 8 years, I did not sponsor a table or any part of the Ryan House breakfast.  For the 3rd time since you have died, I didn't attend (virtually or in-person).  I still haven't been able to visit the memorial garden at Ryan House to see your bear tile in person.  Funny how I once pictured myself going after you died and sitting outside, but since you have died I haven't even driven that far down Thomas Road.

This month the grief was extra exhausting.  It is really a different type of exhaustion than being up all night and then going to work.  It is also really challenging to explain with words.  But I am drained.  I am drained from having to think about you not being here, but I am too drained to even talk about you that much.  I have realized that I don't bring you up as much with strangers.  I am fairly certain I have talked about my 5 children ages 12, 10, 8, 7, and 4.5 in the present tense to many people.  It is easier.  It still gives me pause when I say your age.  I still have difficulty comprehending that you would have been finishing 1st grade.

This month I painted a rock for you.  Although I didn't take a picture to include in this post, instead I went with a beautiful picture of your sister sitting with you as she painted rocks for you.

This month isn't any easier without you here that is for sure.  It is just another series of days and weeks that continue to pass us by without you here.  It is just another period of time that doesn't have you with us and makes our lives vastly different than how you would have known it.

Anyway baby girl.  Another month is gone but you are still far from forgotten.  I wish you would find a way to come and see me!  I miss you so much. 

I love you.

Until next time.

Love always, 

Ema

117 weeks

Dear Sonzee, 

Sometimes the weeks fly by so quickly, and other times I feel like it couldn't have just been one week. Today marks the third first Monday of May you aren't here.  I am not quite sure how it is already May.  I am not quite sure how you have missed so many.  I am just not quite grasping your absence this week.

Last week was busy getting back into the grove after spending 12 days in Florida.  The house has come a long way in a week.  It is a good thing since we are officially out of this apartment living in a month from tomorrow.  Ironically, I just realized it will be the 3rd of June.  I find it amazing that you really do orchestrate everything.

I finally went to see your home yesterday with Meena and Noam.  I am sure you were aware because of all the wind. At one point Noam happily and casually said "hi Sonzee".  I wish I had caught it on camera.  We painted you some well-overdue rocks.  We reglossed a lot of the ones sitting in the sun.  It is still so hard to see your name literally etched in stone.  They hired some new employees at the cemetery.  There are a lot of new headstones, but your space looked the same. You have some amazing rocks, there is one special red rhinestone rock with a sweet message and I love seeing it sparkle in the sunlight. 

Last week on Thursday I was part of a 2-hour IEP.  It was a rather typical IEP except not everyone is privy enough to know about you, and the home SLP and OT of this student attended and were explaining the complexities of the child and were basically insinuated he was the first kiddo who had the types of needs he has.  Firstly, the beauty of FBC is that it is a school that has so many medical complex kiddos.  Secondly, you were more medically complex than he is, and while I don't know everything, I can promise, I know more about this child than they do, because for 4 years  11 months, and 22 days I was also a parent of a similar one.  Ever since you left I have a very specific type of "grief angry", maybe we should call it "grangry". Anyway, it is basically regular normal grief and anger mixed together and on steroids.  It happens when I am completely overwhelmed with my grief and frustrated by something someone has said that they have zero clue relates to anything much less the fact that you were alive, had CDKL5 and died when you were 4.  When I am "grangry" I want to scream about you and everything that we experienced while you were alive and let people know that you existed. In this case, I would have also liked for them to know that I once used to have an FBC mom hat in addition to an FBC SLP hat, but I kept it all inside.  I was attending virtually and had to really control myself not to slam the laptop closed, multiple times.  The meeting ended, but when I am grief angry it doesn't subside as easily.  It has been 4 days and I am honestly still off-kilter and upset about it, but I suppose a good grief meltdown is on the horizon soon anyway.

There are only a few weeks left of school and a lot of travel coming our way for your sisters and myself for more bat-mitzvah's, summer is around the corner.

Anyway baby girl! I miss you lots!

Come and visit <3.

Until next time.

Love always, 

Ema

116 weeks

Dear Sonzee, 

Today it has been 116 weeks since you were here.  Sometimes even though I write you a letter every week it still makes me pause an extra second to see the actual number of how many Mondays it has been.  As I have said at least 100 times before, I can still remember the details of that Monday as if it were to have happened today. I tell myself it is a blessing because maybe one day I won't remember it so well and I won't have any pictures to jog my memory.  There are so many details of your life that have already slipped from the forefront of my mind, I shudder knowing the same can and probably will happen at some point. But for now, 116 Mondays since you last shared my physical space, I am thankful I remember it all.

This last week we spent in Florida.  I laughed being a tourist in a state I spent the majority of my life.  I went to the Everglades for the first time and not just driving through.  We took an airboat and also went on an animal encounter.  I didn't mind the baby alligator, probably because he had his mouth taped shut, but the boa and huge scorpion I could have done without.  The airboat was fun, I loved how much your siblings loved it!  When we started out there was a black and red bird.  I thought of how it could have been you but then kept the thought to myself.  Sometimes I feel insane when I find myself making everything a sign.  I would totally sound like a nutcase if I spoke the words aloud.  

This week was another yizkor service on the last day of Pesach.  I sent savta flowers for the last days in your honor, so they were a pretty red and pink bunch.  I got your oldest sister a grieving book for teens (I know a bit early, but I am sure you've talked to her and I bet you would agree).  She isn't wanting to read it.  I am hoping she is just telling me that and she is reading it without me knowing. I HATE how your siblings keep everything to themselves and then randomly share a "fun fact" that would have been useful to know 2 years ago.

I spent a good portion of my week thinking about you in various ways.  I will probably save the bulk of the thoughts for another day, but we saw so many people and no one asked about you or brought you up.  It was one of those side notes I just stored.  I think I was indifferent to it, but I definitely noticed.  I wonder if they feel awkward about it or if they have already forgotten about you?  It has only been 2 years...is that possible?  Out of sight, out of mind?  Maybe it is better than asking me something dumb, that would be uncomfortable.  I mean I have fun doing that myself as it is, just throwing little comments here and there about you and death. (I can't lie, I would rather lighten the mood and it is fun to watch people not have any clue what to say, subconscious payback?!)  

The other thoughts I had were as I was walking with your siblings, laughing and smiling.  From the outside people would walk by and think how amazingly lucky this family is.  2 boys, and 2 girls, on a vacation for close to 2 weeks to Florida, must be nice.  To be fair, we look "perfect".  The life many would dream of.  A beautiful family basking in the Florida sun.  But we are far from perfect, and we aren't whole.  We walk around with a fake facade, pretending this is life...well it is, but it isn't...because you should be there...in your wheelchair casting the reality of what our life should still be, but isn't, and won't ever be.  It sucks.  I wear all my Sonzee jewelry, but sometimes I want a bigger sign that says "bereaved mother, buried my 4-year-old daughter in 2020". 

Anyway, yesterday we flew back to Phoenix.  In true Tzvi and ema fashion we were on the plane, deboarded from the plane, put on another plane because the first one was "no good", and after 2 hours of a delay finally were on our way.  Back to another week of reality, and a little less than a month left of work for this school year for me.  Summer organizing/packing is getting underway and hopefully, the house will be ready in 6 weeks.

Anyway baby girl!  

Have a great week! Love you! Miss you!

Until next time.

Love always, 

Ema

115 weeks

Dear Sonzee, 

Today marks 115 Mondays that have come and gone.  It is the first Monday since you left us that we are in Florida.  My memory has become so foggy, but I want to say that you were never in south Florida, I wish I could remember some of the finer details of life, but with your absence went a majority of my memory.  Unless the events were profound, the images are all blurry, and even squinting doesn't help make them more clear.  

We left for Florida close to a week ago.  I spent a few days with Elle and your siblings had fun with aba and savta.  Friday marked the beginning of our 3rd Passover without you with us.  Aunt Shuly, Uncle Russell, and Jami came over for the first seder.  At the second seder, aba's good friend came over.  

Friday night your little brother ran around like a crazy man despite my attempts to explain he was going to get hurt, and now he has a broken hand.  I feel like I have unlocked another parenting level now that all of you have had at least one broken bone before you were 10 years old.  You still win for having the most, just never cast. We were always afraid you would hurt yourself during a seizure if you had a hard cast. 

Mr. Joe and the crew continued to work hard on the house while we have been away. The new pictures he sent show almost all the drywall complete and Noam's bathroom is cemented and ready for the next steps.  We are still waiting on the garage doors to be delivered and aba's and ema's vanity came damaged, but otherwise, I feel like things are going semi smoothly.  I am just ready to be in the house already!

Anyway baby girl.  We miss you lots!

Until next time.

Love always, 

Ema

114 weeks

Dear Sonzee, 

Today is 4/11/22...it also happens to be 114 weeks which is 411 backward, and it is also a bit after 10pm, which is 22 in army time.  Maybe I am stretching reality, but it stuck out to me and it felt worth mentioning. 

Last week at grief group was the first time I said it was 113 weeks, but since no one besides me counts in weeks like me, it was 2 years 2 months, and 3 days. When I say 2 years it makes it feel so long ago, but in reality, it feels like it was actually today.  After 114 weeks I can make it through talking about you more often than not without crying, but then sitting down to write to you brings out all of my emotions and I find myself right back to the beginning of this journey. I wonder if there will ever be a week that it won't be the case, because week 114 isn't it.

I feel like nothing eventful happened this last week, except maybe that Laeya started gymnastics with a friend from school.  Since she graduated from swim the rule was she had to find another activity to participate in to be a little active. We will see how it goes. 

This week I worked a bit on the route for our drive to NY, and then I started to think that I might do a completely different drive.  Good thing I have some time to finalize the trip. 

Last week a student started to use your GoTo seat.  Mrs. Dina came to get me to show me how cute they looked sitting in it.  It makes me smile to know it is being used. I wonder if you would have finally outgrown the size one? I wonder if I would have still shared it with others had you never left?

The house continues to get closer to completion. I am ready to sort through your boxes and make your little area.  I (think) I am ready to see more of your stuff?  I stared at your pacifier clips the other day while I waited in the doorway for your siblings.  It may have moved houses, but it still hangs the exact same way.  I cannot believe how many different clips you had.  I mean I can, because obviously you needed a clip in every color, but really, you had so many.  You had just gotten so many new ones also for your birthday.  They still hang on the same string in their cases...and it has been 114 weeks. 

Anyway baby girl.  I miss you lots!  I hope you have a great week!

Love and miss you!

Until next time.

Love always, 

Ema

2 years 2 months...and 2 days (April 5, 2022)

Dear Sonzee, 

It happened.  I anticipated it would happen, but I didn't realize how soon it would occur.  Today, is April 5, 2022.  Today is 2 years 2 months and 2 days since you died.  Today is the first day I realized that the 3rd already happened. This was the first month in 2 years that the 3rd of the month was another day.  In fact, it was actually Elle's birthday.  A date that used to stand alone, but for 2 of those years I am pretty sure I didn't think of the day as hers anymore.  It was a day that meant another significant amount of time had passed without you here.  While that is still the truth, this month was the first time that it wasn't the only truth.

There is still a lump in my throat when it comes to thinking about you not being here.  There are still many moments that catch me off guard and bring me to tears in front of crowds of people.  There is still this huge empty space in my heart.  There is are still moments when I can't breathe thinking about you being gone for as much time as you have been and knowing that there will be such a significant amount of time ahead.  There is still so much pain. There is still so much anger and frustration over your life and death.  There is still panic that all of this will never end.  But, for the first time in 2 years, there is also a tiny beam of sunlight that is peaking through showing me that it is true, there is a way to merge the before, during, and after and life does actually form a new normal that isn't horrible. 

After 2 years I am actually starting to learn how to balance our life with your death (I can't lie, it isn't without help).  It sometimes feels impossible, but at the same time, it sometimes seems like it was so easy.  As I think back to how I spent the monthaversary to the day of your death compared to now, I can only compare it to how we used to celebrate your seizure-free days at the beginning of your life.  In the beginning, each seizure-free moment was honored, each hour that went by was a celebration, but the period always ended, the chalkboard was always erased, and the next period of time would start all over again. I even went through a phase where I considered just celebrating your seizures themselves because they happened more often than not.  

When you first died I couldn't leave the cemetery for hours.  I sat getting burnt and eventually Valley Fever from all of the dust that would blow.  Each month I painted you a rock to mark the date.  They were always completed in advance and I made a point to make going to the cemetery part of my day at whatever cost.  I was so afraid of going to NY in the summer of 2021 because I didn't know how I would handle not seeing you every day, but it turns out, I survived.  After I came back going to see your grave was worse than not.  I would still decorate rocks and have aba bring them to you, but the intense feeling that drew me to your grave initially started to dissipate.  I would still give a nod to the significant days that would pass, but there came a shift where I knew I didn't need to go to the cemetery for you to know I was thinking about you 24/7.  The reality of you not being there started to feel true, and having to see your name on a stone wasn't something I needed to put myself through over bereaved mom guilt. 

After 2 years 2 months and 2 days, I feel like I am starting a new part of this journey. I won't say it is acceptance because I struggle with that word and your life all the time.  To accept it in my mind means it is okay, and nothing about you having CDKL5 and dying before you turned 5 is ok. But I am at a place where I can accept that our lives without you here physically are going on, but spiritually you really are still here, always.

So happy 2 years 2 months and 2 days of freedom baby girl!!!  I hope one day to see you in my dreams.

Until next time.

Love always, 

Ema 

113 weeks and 1 day

Dear Sonzee, 

Hi baby girl!  It's been another week since you were last here.  I always feel like I cannot remember anything that happened during the previous week to recap when I finally take the time to sit down.  This last week Laeya graduated from Hubbard swim.  It is crazy that she started to swim there almost 12 years ago.  Hard to believe that now only Noam and Meena are left to swim.  Meena is now in Hammerhead seniors and Noam is still a goldfish.  He is finally getting more comfortable in the water, finally not grabbing onto his coach for dear life when he back floats.  He could have learned a thing or two from you and your waterways.

Last week I found myself going back to FBC main campus for a meeting.  It is funny, that I subconsciously take the long way if I have to go somewhere by the classrooms, and my body avoids the central hallway at all costs.  If I find myself in it for a specific reason my head refuses to turn to the left.  I am so thankful that I have these internal boundaries.  I can still picture you and Corrinne during circle time or rest time.  I think my mind is afraid to erase or replace those images, so it doesn't even allow it the opportunity.

Over shabbas we finally were able to get up to Bear Pines.  We took friends with us and it was so much fun!  Aba keeps bringing up selling it because of the insane prices houses are going for, but unfortunately for him, I am way too attached. We have local friends there who come over and the girls are obsessed with the doggies who live behind us.  Laeya spent over an hour cuddling one of their new little pups on Saturday.  The house itself is the perfect house, the feeling of calm that happens when I am there is impossible to mimic elsewhere, and the moral of the story is Bear Pines can't be sold.  

On Sunday was Elle's birthday, and Laeya went to a bat-mitzvah, it also happened to be the 3rd, which means it marked another month since you left us, but I can't lie and say I realized that, but I will explain more in another post.

Anyway baby girl!!

I miss you beyond words!

Until next time. 

Love always, 

Ema