Wednesday, June 29, 2022

125 weeks and 2.5 days

Dear Sonzee, 

I think I have mentioned before that some weeks fly by and others seem like they slowly drag by.  It isn't in the physical day-to-day sense, but more from the mental perspective.  I wrote you a week ago, but honestly, it feels like it has been so much longer.  If I had to assign a reason I am pretty sure it has to do with what the week was filled with.  This last week was so physically draining with our drive from Phoenix to New York and then getting set up in the house paired with visiting uncle, Hay-Hay, and your new cousin, and then the start of camps for your siblings.

During our drive to NY, we went into gas stations that had key chains.  While your siblings grabbed the ones they wanted I noticed a heart-shaped rock with the state name, perfection.  I knew this was perfect for you.  We didn't stop in every state, but we ended up with three states.  My new activity will be collecting heart-shaped rocks for you with every state on them!

We arrived in our home for the summer a week ago.  It was really an amazing trip, filled with a spontaneous stop in Casey, Illinois, where we saw some amazingly huge items (think the world's largest rocking chair, mailbox, taco, key, golf tee, etc.)

I spent Wednesday through Friday getting the house set up and buying all the things we needed for the house and last-minute items for your siblings for camp. On Friday was aba's birthday!  He turned 40!  Insane that he is now in his 40s and I am on his tail.  He was still in Arizona with Tzvi, so Morah Zupnick helped pull off some birthday specialness and I had cardmyyard attack the front yard with a huge sign (hahaha). 

On Sunday was meet baby Isla day!  It was amazing!  She is so adorable.  One of your siblings mentioned how you won't get to meet her and asked how she will know about you.  I said we would tell her.  I honestly hadn't given it that much thought because I didn't anticipate that she wouldn't learn about you or know you, but I have to admit it does suck we won't ever have a complete cousin picture.  There will always be you missing, and that will always be painful to see.  I stayed up with her and took night duty and she is such an amazing first baby, so chill.  We warned uncle the next one won't be the same (hehe). I couldn't get enough snuggles with her.  (so obviously I will be going back a lot this summer)

I went to get aba and Tzviki from the airport after the all-nighter and then we went back to uncle and Hay-Hay's. Eventually, we drove back up to VV and it was the last night before camp.  Yesterday we dropped off Noam at day camp and then drove to PA to drop off the elders.  I have been stalking their pictures since they left.  It is always a challenge for me to remind myself that it is just camp and (g-d willingly) they will be coming home at the end of the summer.  I talk myself down a lot when the initial panic begins to pop in and overall I am doing okay.  It is just hard.  You being gone is hard.  You never coming back is harder. The reality when it punches me is the hardest.  The permanence is like a punch to the gut that removes all the air from my lungs. 

It still sucks.

Anyway, baby girl, I will write more about VV soon! Missing you and loving you!

Until next time.

Love always, 
Ema



The Mighty Contributor

Tuesday, June 21, 2022

124 weeks and 1 day


Dear Sonzee,

This last week was filled with putting the last of the items away in the house and unpacking boxes.  We seem to have misplaced Mermie, but Aba assures me we put it somewhere safe - so we have to just remember where that may be.

Mrs. Penny and Seth came for a visit while Lily was in astronomy camp.  I always love their visits! They came for two days and slept over one night. The bathrooms are still ALMOST finished - this time by Sunday when aba and Tzvi leave they will be completed (we hope).

We finally celebrated Meena’s birthday with a pottery party, better late than never right?!

The week was filled with random pop ins of people and  I thoroughly enjoyed making multiple batches of cold brew and various teas for everyone. I LOVE our new house location! 

Shabbas had lots of friends over as well for all of us. I think we are all loving it. 

I spent last week finishing packing for camp and NY. Aba and I packed the car Friday and Saturday night. By Sunday we were ready to head on our way. The girls, Noam, and I met aba and Tzvi by you for a Father’s Day picture and then we left on our journey.

Tonight ends say 3 and tomorrow we will be in NY. It has been a fun and actually easy drive.  We picked up keychains for you every time we got for your siblings. They have states written on heart rocks and it’s so perfect for you!

Anyway baby girl. As always we miss and love you lots!!

Until next time.

Love always,
Ema 


The Mighty Contributor

Monday, June 13, 2022

122 and 123 weeks

Dear Sonzee, 

I begin with what seems to be my weekly apology for being late or missing a week.  After I finally located my computer at the end of last week I figured I might as well wait for today to combine the last two weeks.  Most of which has been filled with moving out of the apartment and into our new house. 

I am thrilled to be in a house.  Apartment living is just not for me.  I actually heard the music from wherever it was coming from into the boys' room in the apartment in Tzvi's room the first night I tucked him in.  It took me two days to stop the make-believe music.  Everyone has been settling in nicely.  Aba and I spent the last two weeks sleeping on either a couch or a trundle in each of your siblings' rooms because our room was a hot mess.  We finally put up all of our dressers and closet organizers, despite the bathroom still in full construction mode.  Neither ours nor Noam's bathrooms are completed yet, but will hopefully be by the end of this week. (I will say the couch is amazingly comfortable so I didn't complain)

We are working on each of your siblings doing their laundry since they now all have hampers they are hoarding their clothing in.  In the apartment, I just kept the washing machine open and they dumped their clothing inside.  While extremely efficient if I missed a day there was a backup and nagging over needing clothing, so to offset the complaints everyone can just be responsible for their own laundering.  I have to say, so far your 3 older siblings have been pretty awesome, and I switch their loads and tell them when they are ready for folding and putting away.  They have learned the detergents and items that go into the cycles. 

Your areas have been set up, but I am still behind on putting up all of the pictures and new frames. I will probably have to push things off until we get back from summer because as of today camp packing is strictly underway. 

The last two weeks have been mainly ok in terms of settling in a house you never lived in.  We have set up your items strategically around the house but in an organic manner.  The idea is that you are everywhere, and we are doing our best to ensure that is the case.  It was so cute, as I walked by Noam's room this week he was putting out your picture on his dresser. I put your feeding pole and one of your bags hanging from it in the family room.  Your blankets are in a basket side table with pictures on top, but available for me to sit on the couch and snuggle with. (It almost takes me back to the hospital days since they are the ones I would get on the care cart, minus the fact that the couch here is so much more comfortable than the PCH benches or chairs).  I put your oxygen machine next to those side tables.  Your artwork is slowly making it up on the walls, and all the gifts of trees given in your honor and memory are in the kitchen, along with the picture that I took of your grave when a heart somehow appeared reflected in your rock basket when there was nothing around to do that. Your Rifton chair sits with the epilepsy bear PCH child life made for your siblings so they wouldn't be scared to see you with the EEG hat on, and we put some of your Sonzee items in that area. That kicking Daniel Tiger piano that you used to love and hit until the frog sang is tied to the footrest, and I put in new batteries so I could hear the frog sound if I am in the mood for it.

Your siblings have been swimming up a storm in the pool.  It was a major pull to this house, especially since it came with a diving board as well.  A part of me wishes we had your swim spa, the other part reminds me I couldn't bring myself to go inside it without you, and hadn't since you died. 

The downside of combining weeks is I forget a lot of the details I would have told you, hopefully, I will do better.

Anyway baby girl. I miss you lots and wish I could see you and peak in on whatever you are up to. Come and visit and let me know if you approve of where I put all of your things!

Until next time.

Love always, 
Ema

The Mighty Contributor

Tuesday, May 31, 2022

121 weeks and 1.5 days

Dear Sonzee, 

This last week has been really tough. I wish the grief could stay more even-keeled, but I guess that isn't how this all works.  This week, I spent a lot of time getting the new house ready for move-in day.  It won't be the perfect ribbon-cutting ceremony, but hopefully, by the time we leave for NY, it will be close to perfect.

There is a lot of weight that comes with opening boxes that say "room #1".  It was worse when I randomly picked a box, opened it, and didn't even consider it would have your stuff in it.  Since grief avoidance is my specialty, the minute I caught a glimpse of something of yours I immediately shut the box and moved on. (Well until the whole 1.5 days into week 122).

You'd think by now I would be able to look at your stuff without crumbling, but that's a huge nope.  Maybe it is because I haven't seen it in so long? Maybe it is because in 19th street I had to purposely open a door and go into your room willingly.  It only caught me off guard if the doors were left ajar, which wasn't often. Maybe it is just how this will go.  Aba seems to think eventually I will get used to it.  Today I disagree with that notion, I can't imagine (do I even want to?).  Will I eventually become numb?  Will it eventually be different?  For today it is hard to imagine coming home every day and having to see your stuff in my face without you there.  I can't lie, after I set a lot of it out I wanted to throw it all back into a box, but I am going to try and do the opposite and attempt to accept our reality.

This week I saw my first hummingbird at the new house. I recorded him/her for a good 2 minutes (until aba scared him/her away). I joked with him you clearly didn't want to see him that day, and he pointed out you visited him at least once since you died...so he won that convo hands down.

This last week from Saturday night until this morning Laeya and I went to Florida for a bat mitzvah. We saw savta and had a nice time.  We also drove to see Jenn (and Dalia) and Elle, and got to see Ronald pitch in a tournament (this way when he goes to the MLB we can say "we saw him when...".  I feel so lucky to have seen them both twice this year!

This week your oldest introduced me to this song called "glitter" by Patrick Droney and I can't make it through it without my eyes filling with tears. It is such a perfect song about grief and you. My heart continues to break more for her and all the grieving she does for you.  I know how suffocating it is for me, and it kills me that she feels a similar pain.

Anyway baby girl. I love and miss you!

Hope to see you soon.

Until next time. 

Love always, 
Ema

The Mighty Contributor

Tuesday, May 24, 2022

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


The Mighty Contributor

Tuesday, May 10, 2022

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 22 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.


The Mighty Contributor

Monday, May 9, 2022

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


The Mighty Contributor

Sunday, May 8, 2022

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


The Mighty Contributor

Monday, May 2, 2022

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






The Mighty Contributor

Monday, April 25, 2022

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



The Mighty Contributor

Monday, April 18, 2022

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


The Mighty Contributor

Monday, April 11, 2022

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


The Mighty Contributor

Tuesday, April 5, 2022

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 


The Mighty Contributor

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


The Mighty Contributor

Monday, March 28, 2022

112 weeks

Dear Sonzee,

Today at 1:08pm marks 112 Mondays since you left.  In case you weren't aware, that is a LOT of Mondays. This week was a grief group week.  Laeya, Meena, and I continue to go while the boys go to hockey.  Some families came in after us and have closed out because they are in a "good space" or have the tools and don't need to go.  There is a part of me that wonders if that will ever be me. I joked with my group leader that I will be there until I become a volunteer myself.  I am sort of stuck between wanting to move forward and not go, and being unable to do that just yet.  Your sisters vary from week to week, but FINALLY, Laeya admitted she liked going this week. I will take that as a huge win.  Meena always runs up to her group leader to give her a big hug, especially if it's after we miss a session, and really she only complains about going if she is extra tired.  When you were alive and I would debate if I should take you to the hospital or not, pop-pop would say, "If you are debating whether you should be going or not, you should be going".  I guess I will just continue to follow that advice.

Your brother's hockey season came to a close this week.  It was his last year as a squirt, but it feels like he just became one. It is crazy he will be a pee-wee next season.  Tryouts for fall are May 19, for the spring season, he is going to be doing skills and other sessions.  We might have a few days off from the drive this week, but knowing him and aba, they will find a reason to head down to Gilbert.  This season didn't end with his name on a plaque or with a medal, but for the first time, we found our place on a team.  I am just worried it will all have to change next year.  I have my bedazzled sweatshirts and shirts, so I have zero desire to trade any of that in, but we will see how the cookie crumbles. 

This week your sister mentioned to me that she felt guilty after you died because she did not pray that morning.  It was one of those moments that caught me completely off guard. She was working on a school project, I was cooking dinner and she just casually mentioned it like it was just a typical conversation.  My heart stopped for a minute.  A therapist once told me that children can think some abstract things, but I had zero idea that she was carrying such a weight.  I took a few moments to gain my composure and I said, "Laeya, you do know that you not praying that morning didn't matter right?", She said she knew that you were going to die anyway, and I assured her that was the case; as hard as that is to say, it is the truth.  I still wish your siblings didn't have to deal with any of this.  I wish you didn't have to have the struggles you lived with either.  I wish your life could have been different. I hope on one of your visits you can assure her that she had nothing to do with your timing of death. 

112 weeks and I have no idea what you have been doing or who you are with.  I am struggling with the empty space between us and the fact that I went from knowing everything about your life to knowing absolutely nothing about you.  2 years 1 month and 25 days is a lot of time. I wish I knew the new you.  If you could visit me in my dreams I would so appreciate it!  I miss you beyond words!!!  Be safe and stay healthy baby girl!

Until next time.

Love always, 
Ema 


The Mighty Contributor

Wednesday, March 23, 2022

111 weeks and 2 days

Dear Sonzee, 

Hi baby girl! Sorry, I am a bit late with my letter this week.  Sunday was busy driving back and forth to Gilbert for hockey and a party for Tzvi so by the time we got home I was exhausted. Then Monday and Tuesday were as usual filled with your siblings' activities and so here we are today, 2 days after 111 weeks, and I can sit down and write to you.

Last week was Purim.  I have to admit I dislike that holiday a lot, and it is because so many years during your life you were in the hospital for it.  I hated going without you to the shul to hear the megillah. I remember one year crying in the parking lot before going in.  Other years I just said forget it and stayed in the hospital.  I am fairly certain a rabbi came to read to us there a few times as well.  It is just one of those holidays that has a forever shadow over it.  So, I won't say I did it on purpose, because honestly, I didn't, but I had a chemical peel and massage scheduled for the evening and I went to it, so I missed the huge Megillah reading.  Don't worry, I ended up as usual with Rabbi Dov reading it during the 2nd reading.  Thursday I went to work and Aba went to all the parties with your siblings. I did go to the Purim dinner in the evening after work, and it was a nice time, but I still dislike the day. I dislike seeing all the families in their matching costumes and I dislike I wasn't able to dress you up. I wonder what you would have been?  Hard to think we could ever top you dressing as Nurse Paige and her dressing as you; it is probably best we won't ever have to.

There was nothing else really eventful last week that I can remember now.  Oh, I lied, someone broke into the new house.  Luckily they only took the jackhammer from the crew and miscellaneous screws.  It doesn't make any sense that they left everything else. I did joke initially when aba started to tell me, asking if they took the hamster, but nope, Chip is still (somehow) alive and well?!  I am pretty sure Amazon has a warehouse in the new house but they didn't take any of the boxes, not even the new Keurig I bought so Auntie A doesn't get any contaminated nut coffee since Aba made hazelnut in ours. It is really weird, all of that stuff is right by the front door, it would have been so easy to take!  I was really only panicking over what little we have left of yours being taken.  I doubted they would take boxes, but you never know, and the thought of them taking your stuff and just tossing it out when they would attribute no value to it made me panic.  Luckily though, all of your stuff is accounted for.  I also remind myself that your items of value except for Mermie are with us or at Bubbie's, so it would be okay. Regardless, Mr. Joe and Mr. Gilbert have put extra reinforcements on the front door so it can't be crowbarred open and they built the sidewall to the garage, so now there really is only one access point, and hopefully, that will do the trick.  Aba and I can't even get in now unless the guys are working on the house.  Tomorrow the old roofing will be removed and we are one step closer to maybe moving out of this apartment!

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

Until next time. 

Love always, 
Ema

The Mighty Contributor

Wednesday, March 16, 2022

March 16, 2015

Since 2015 the month of March has always been a difficult one.  I am pretty sure over the 5 March's Sonzee lived she was hospitalized at least one week out of March every year, and the dates overlapped 3 or 4 of those times.  I dislike the month of March in general, but this afternoon into the evening my body started to feel different.  This is definitely one of those things that is hard to explain, but anyone who has experienced a trauma of some sort in their lives can most probably relate.  Something started to nag at me, I couldn't place it.  I was feeling extra anxious, extra weight in my chest, and while it makes zero sense when I start to get my antsy anxiety I drink a cup of coffee. (Don't worry, it is 10:45pm and I opted for decaf, and yes I know the caffeine isn't helpful for anxiety, now moving on).  I made one of my fancier concoctions of coffee and sat down at my computer knowing I was feeling something Sonzee-related, but not quite sure what. Then as I normally do when I am feeling on the edge, I went to google photos and typed the date, March 16.  I realized quickly why my body was on edge.

March 16, 2015.  The official date that life forever changed.  The first night I would spend staying up all night and into the next morning not sleeping while waiting in the Phoenix Children's Hospital ER.  The night that I decided on my own that I had to trust my gut, the gut everyone else was telling me was just being neurotic.  The first night I recorded a seizure, not even really certain that was what it was, but yet knowing in the recesses of my soul that was exactly what those movements were that Sonzee had been doing.  March 16, 2015, was the night I called the after-hours line for the pediatrician's office and flatly told them I would be taking Sonzee to the ER because she had her second seizure.  They told me to call an ambulance. I told them that felt excessive. Since Sam wasn't home I called my neighbor instead. March 16, 2015, we sat in the overflow area of the old PCH ER during cold and flu season, with a brand new baby who was unvaccinated.  I was panicking. March 16, 2015, was the night I didn't understand how a newborn baby seizing wasn't the highest priority child in the ER, the rest of her life would teach me that.  

It is amazing to me how the body remembers but the mind can move the memories to a hidden bookshelf. 7 years ago today, around this time exactly I took a maybe 7lb little baby to the hospital with a video of her shaking in tow not even thinking further than someone was going to confirm my suspicions, tell me she was seizing, and send us home.  I honestly to this day do not know what I thought was going to happen, but I didn't even pack a hospital bag, (rookie mistake). 7 years ago today I can still feel all the feelings I felt. 7 years ago today I can remember the sites and sounds of that ER.  7 years ago today I could tell you the words spoken to every nurse and doctor. 7 years ago today as she seized again I mentioned to the ER nurse how horrible it was to watch her seize and she responded with "you'll get used to it". 7 years ago today I wanted to punch her in the face, but never thought to ask her how she knew that.  7 years ago today and I know how much that statement is true, eventually, sadly, I did get used to seeing them, but I never got used to not wanting to cry watching her having them. 

March 16, 2015, a day that marked the beginning of a story that wouldn't last more than 4 years 11 months, and 22 days, but also the beginning of reliving the trauma of those 4 years 11 months, and 22 days for my forever. 


The Mighty Contributor

Tuesday, March 15, 2022

110 weeks and 1 day

Dear Sonzee, 

110 weeks since yesterday. I keep thinking about "how is it now 10 weeks since we hit 100?" That means it's been 2.5 months since it was 100 weeks.  It is beyond the length of 2 full-term pregnancies and close to half of your life span.  The breakdown leaves me in awe. Similar to the fact that when I actually think about it, you would really be a first-grade 7-year-old. You would have been in the same grade as many of my friends' kids, a fact I honestly forget 95% of the time because that is essentially two lifetimes ago, the one you lived and the one we never knew.

Last week was my spring break.  I had set a goal for me to learn how to nap during the day.  My break ended with the goal not being met.  I was at the new house here and there and did a lot of ordering of all the items we need to complete construction. I think, I finalized the flooring choices, but by the time everything is in place so they can be purchased and put in I am sure I will change my mind 10 more times.  It is a problem.  The pool is waiting on the special order tiles to arrive, and in general, there are many manufacturer delays. I have received confirmations of orders and then confirmation of cancellation due to backorder items not being in stock within 24 hours of one another at least 3 times just this week alone.  It is disappointing, but it is what it is.  There is nothing to do but go with the flow.

This last week it was announced that one of your sister's best friend's family would be moving out of state at the end of the school year.  She came out from school hysterical, as did so many other girls from her class.  There were mixed reactions with some adults suggesting it was part of life and no one died, so the girls shouldn't be upset.  While I can understand that point, and it is valid, what some will (thankfully) never understand is that your sister continues to live every day with your death, with your absence, with you being gone.  And now, one of her best friends from preschool will be leaving her day-to-day life.  Yes, they can remain in touch.  Yes, they can still be best friends.  But, also, yes, in some ways, for her specifically, it is another loss, another experience I wish she didn't have to live through, another piece of life I wish she didn't have to deal with, another heartache that I can't protect her from. I wish she didn't have to experience so much of what she has, despite mockingly telling myself it continues to shape her into this continuously growing amazing person, rubbish, I wish I could give the girl a break!

Anyway, little girl. I miss you so much!  Hope you are having a great time doing whatever it is you do!

Until next time.

Love always, 
Ema

The Mighty Contributor

Tuesday, March 8, 2022

109 weeks and 1 day

Dear Sonzee, 

Today at 1:08pm it will be 109 weeks since you were last here.  So much time has passed without you here, and it continues to do so, yet it still feels so surreal.  I still ask myself "how?"  Yesterday was another PCH PFAC meeting, to think you died on only my 2nd official meeting date, and today marked the 3rd month into my 3rd year.  PCH has come so far in just this short amount of time, in a way it makes me sad to not physically be part of it. (To clarify, not sad enough that I need a reason to be part of it).  They are testing out new beds for parents, and they have all new ipads (they were starting to have them available during your last inpatient stays, but they never seemed to work). There are other amazing and new things on the horizon, and it is incredible, but yet a part of me feels out of place continuing to participate.  I don't have any current feedback to share, and my experiences feel so far away.  I know like with the house, despite knowing it was time, I know it will be an emotional end.

On that topic, we closed officially on the sale of the house on Friday.  We took your siblings back one last time to walk through and say their final goodbyes. When it came down to it, I couldn't do it, I stayed outside.  I am happy with my choice.  I have told everyone who knows that I compare it to saying goodbye to you.  109 weeks and 1 day ago I carried you out to a gurney, I placed you on it, tucked you in with an extra blanket, gave you one last kiss, and walked back into the house.  I couldn't bring myself to go see you one last time at the mortuary, I didn't open the casket one more time to "make sure it was you".  I wanted my last memories of you to be of the alive you with soft cheeks and pale skin.  I don't have to worry about erasing the images of your skin toned changed or of forgetting the way you may have felt after you were no longer you.  It was the same with the house.  It wasn't our house anymore.  The house we brought you and your siblings home from the hospital to was not that house.  So much of that house was gone, washed away in the flood, and gone with you. I didn't want to see the house we put back together, while beautiful, it wasn't the same, it wouldn't have the same feel.  I had to let it go without having to close my eyes to remember what our house was from before.  I won't lie, I still get emotional thinking about it no longer being our house, but like aba said, once he took your stuff down off the walls he knew we wouldn't be going back. 

I spent the last couple of days thinking about the new family who now lives within those walls. I know how excited and happy they must feel. I can picture big smiles and a house that has been vacant becoming alive again.  My heart feels happy for the walls to have life within them again.  I will forever miss our incredible neighbors on both sides and all of the memories that were made.

Your brother had a hockey game Thursday night.  He played one of his best games this season. I joked with some moms around me wondering if aba had bribed him.  I sent him a text asking if he promised him money or something specific for playing so well.  I laughed when we got to the car and Tzvi asked how much money he made. That kid!  He has promised him more money for his game tonight because it is a team his team hasn't been able to beat all season.  We shall see how he does. Sadly I will have to watch on Livebarn because Meena has a parent meeting for her team evaluations.  We find out tonight if she will be moving to Level 2 and if so, when.  

Noam has been insisting on having his Sonzee book read to him every night.  It makes me happy and sad.  I suppose that is all things grief. Otherwise, I cannot think of what else to report.  Been working a lot on getting everything we need for the house as construction continues, and starting to plan for camp and summer. I miss you beyond words and wish I could see you!!

Until next time.

Love always!
Ema
The Mighty Contributor

Thursday, March 3, 2022

2 Years 1 Month

Dear Sonzee, 

There came a point during your early years, as was the same with your siblings, that I stopped saying your age in months when I was asked how old you were.  I think it was due to trying to keep you all younger for longer because months meant you weren't yet years.  As each of you got closer to the 2-year mark something shifted and your age no longer was represented by months.  Maybe it is some sort of pressure that causes the shift because at some point everyone has to grow up? Maybe it is because it is less clumsy to say a small year versus a lengthy amount of months? Maybe it is just because at some point it becomes impossible to remember what month you actually are and the year is simpler?  Or maybe, it is just simply because after a certain amount of months of counting your age, life takes on a different role and the day itself gets forgotten and the next thing you know another year has passed?

Last night I was thinking about the significance of what will be happening on Friday, (I will wait to post about that until tomorrow) March 4, when I realized that meant today was March 3, and that meant it would be another month that had passed, but one that I didn't even realize was coming.  It was the first month in 2 years that snuck up on me, the first month that I didn't even think about grabbing a rock despite having no time to decorate it.  It was the first month that was about to pass me by without me even realizing another one had passed.

That fact alone makes me upset, but also, it makes all those phrases that I have been told for the last couple of years from others who are further down the path of grief show their first glimpse of reality.  It doesn't and won't get any easier not having you here, the pain is worse than I could have imagined, that won't ever change, but it definitely becomes different.  Your absence becomes it's own rebirth of life in a sense.  The timeline began all over again and so did all the parallel components to that of having a newborn baby.

I am at the point in this journey where the moments of grief that aren't what they once were catch me off guard.  The reality of how they have changed is what causes me a different form of pain.  The fact that I am noticing less in some ways, and the fact that things happen without being in the forefront of my mind makes me sad, but point out how this journey will continue to go.  At some point, I stopped putting monthly stickers on your onesies.  At some point, I stopped sitting you on the same corner of the couch to take your monthly picture.  At some point that even became ok and was something to celebrate itself. 

While I won't ever celebrate anything when it comes to my ever-changing journey of grieving you being gone from me, I will probably honor it with a good cry session and give a nod up to the sky in your honor.  So for today, in honor of it being 2 years and 1 month since you are gone, I will give myself grace and acknowledge that I am okay not rushing over to the cemetery with a pretty painted rock that says 2 years 1 month.  I will give myself grace for almost letting today pass me by unnoticed because one day it won't be an almost, and when that day happens, it too will be okay.

The tears even if they dry up for a bit, they will always return.  The love for you is never gone and won't ever be.  The grief and its weight is never going to be lighter or something I will ever get over.  Your absence won't ever not be felt.  Your life nor death will ever be forgotten.  But for the first time in 2 years, I truly believe that some form of this life after you has the potential to get easier, and I won't overlook that it happened today, at 25 months.

Until next time.

Love always and forever,
Ema


The Mighty Contributor

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

Monday, January 31, 2022

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

The Mighty Contributor

Monday, January 24, 2022

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

The Mighty Contributor