January 23, 2020

Dear Sonzee, 

Today you swelled oh so much more, despite our best efforts to limit your intake.  Nurse Paige gave you a bath...I feel like I recall you not being uncomfortable during it.  You had so many snuggles today. We still didn't know what to tell your siblings, we let them give you hugs and kisses and spend as much time as they wanted because we didn't know how much time you had left.  They made you pictures that said, "feel better".  They assumed that because we had not taken you to the hospital that meant you couldn't be that sick.  Being unable to find a middle ground (again/still), Aba and I continued our adamant differing opinions and desires, until Dr. Wendy made the call to send out a hospice nurse along with our social worker to assess the situation.

That was a really tense situation.  They both arrived and I could read their faces completely.  I knew they agreed with my assessment.  Our social worker for sure didn't get paid enough to offer the amount of support she did for us.  She did as good of a job as anyone could trying to talk with aba, but aba just wasn't having it from anyone.  He was not giving up.  He couldn't understand even now that it wasn't up to us...we had done everything we could, it didn't matter, you were calling the shots from now on.  As an olive branch, I asked Nurse Amanda to come and do a set of labs.  I was vehemently against the proposed idea to take you to PCH only to have them tell us "there was nothing to do" and then have them admit you to hospice and come back home.  Over my dead body was anyone taking you out of the house and into that ER to end up right back where you were.  I stated that really loudly...I am sorry for all of the screaming and fighting that happened right next to you.  I bet you wanted to sit up and tell us all to shut up.

After the visit, aba was still not able to agree to hospice, so I was told by our social worker that she did put in a note that if I called hospice myself there was approval at this point to admit you.  The hospice nurse told Sam that he needed to do something, either take you in himself or get you admitted to hospice.  You were swelling just too much...something needed to be done to make you comfortable.  You didn't complain, but I am sorry if you were in any pain over our inability to be a parental unit.  I can't imagine the amount of swelling you felt was comfortable at all.

In the evening we accessed your port and nurse Amanda did your labs. By nighttime, your swelling was getting even worse.  You couldn't clear the fluids from your lungs.  At 2am after aba and I cried many many tears, aba called to admit you to hospice himself.  I think we both cried ourselves to sleep if we even slept?  From that point on I wouldn't leave your side. I whispered to you every night onward that you were such a brave and strong girl and whenever you were ready it was okay to leave.  We still hadn't told many people.  It would take me 2 more days to be able to post about it on your Facebook page to let everyone whose lives you touched know that your time with us physically was limited.

Until tomorrow.

Love always, Ema

January 22, 2020

Dear Sonzee, 

Today the few people who were aware of the situation going on all checked in on you. Everything was essentially, "the same".  I went to work today.  It would turn out to be the last day I would physically step into FBC for work in what now has been an entire year.  I was perplexed over your rash and one of the para's at West Valley son's had a rash randomly also so I clung to the fact that maybe, just maybe, what you had was just some random virus.  I played the "what if" we went to the hospital game in my mind. What if we went and at least received confirmation that it was not any of the viruses on the PCR swab.  What if we went and they said there was a way they could help you.  I kept this soundtrack to myself.  I had to appear like a bull to aba because he was playing this game aloud as it was so I couldn't show that I was considering these thoughts or off to the hospital you would have gone.

Deep down, I knew.  I knew you were not sick.  I knew the interventions PCH would have done, would have been with your best interest as a doctor to do, but I also knew in your current state that would require interventions that crossed our hardline and there was no guarantee they would reverse what had already begun and then you would have died at PCH.  We promised ourselves and you that you would never die in the hospital.  No matter what he had to do, it was home or Ryan House, that was the final answer.

You looked worse today in terms of swelling.  Your feed had now been off for close to 2 days.  You were on Pedialyte, but we kept having to lower the rate or your lungs would fill with fluids.  Aba was against lowering the rate, soI let him take over your pump.  I couldn't keep having you choke.  He would keep the rates as high as possible for as long as he could before you would show signs of coughing and or choking.  I wanted it off, I couldn't bear you coughing, choking, and essentially suffering any more than you were.  It was a horrible place to be.  We were in touch with all of your doctors, we were receiving guidance, but we had not officially admitted you to hospice.  They were there to listen to both aba and I give our perspective and wishes, but ultimately when aba was asked, he wasn't ready for "comfort care".

I wasn't ready to have your death sped up in a hospital.  I knew the outcome.  So for the first time in your life, I stood my ground solidly.  It was not easy baby girl, but I knew I had to for you.  I was done humoring everyone to prove what was happening.  I didn't need to be told "you were right".  I needed you to be as comfortable as possible, in your familiar settings, with your people, and no PCH restrictions of who could see you.  I didn't need to humor anyone on your behalf anymore.  So I dug my heels into the ground and held firm.  It would get harder tomorrow.  Tomorrow it would feel worse than the last few days had...who knew that it is essentially how every day onward would turn out to be.

Until tomorrow.

Love always, 

Ema

January 21, 2020

My dearest Sonzee, 

Today is one of the hardest days to write about.  It isn't like any of the upcoming recollection posts are easy, but there is something to be said for finalizing a decision and moving forward because otherwise you are just stuck, which would be how it was today.  Today a year ago I dropped your siblings off at school and drove over to FBC and sat in the parking lot.  I was torn on whether I should work today.  If it wasn't the flu that you had then I wouldn't have panicked over potentially exposing other medically complex kiddos.  I was really conflicted on what to do, so I reached out to Miss Jaime and she agreed that I should stay home until we knew.  Phew! That removed a lot of the guilt I felt over not delivering speech services, but the safety of other children in your position was something I have always felt extremely strong about.  You know my feelings on "allergies", so the potential of something deadly walking into the halls of FBC on my clothing made me feel sick.

I drove home.  Meena was having an evaluation at Madison Elementary, so I checked on you before I picked her up to take her. You were in bed the entire day.  Today was one of the last days I would get into an insurance argument over medication of yours not being covered.  (PS: They finally called to tell me it was ready to pick up 2 days after you died).  I had little to no patience to deal with anyone trying to tell me "no you couldn't have the new nasal rescue med" that Dr. Jarrar had just prescribed.  I spent literally hours today calling every pharmacy in the valley and speaking with both Aetna and Mercy Care.  FINALLY, after Dr. Jarrar changed the medication to a different nasal rescue med, PCH worked it out.

Today a year ago your father deaccessed your port and forgot to put in the heparin.  (Ironically, it would not really matter, but more on that in a few days).  He worked it out with Nurse Amanda, and eventually reaccessed you and gave you the heparin and deaccessed you again.  I am so sorry for all of our mistakes that resulted in you having more pain.  Your lips were so dry, they were bleeding and cracked.  It didn't make sense, you had been "sick" before (just never actively dying).  By the afternoon the lightbulb clicked in my mind to call the dispatch health service Corrine's mommy always talked about to come and give you a flu swab.  Aba didn't understand why it mattered, me, the type A lady over here NEEDED to know.  I might have lied to the woman on the phone and told her you had every symptom of the flu because when I initially said you didn't have any, she said you wouldn't be given the swab.  I said you were home with aba and maybe things had changed.  I texted Aba and told him what to say when they came.

By 3pm with a lot of fighting between aba and myself, and discussions with hospice Aba said we would be admitting you to hospice.  I relaxed a bit but didn't know what it really meant except that we knew you needed someone to help support our decisions and you in any way possible.  By 4pm the decision was reversed.  I wonder what our social worker thought of today and the next 3 days.  I know you had to be aware of all of the chaos occurring.  I apologize to you about that.  It had NOTHING to do with you...it was aba and I and our disagreement over the same outcome but not being sure how to get the same outcome with our different ways of thinking.  Ultimately, we both just wanted the best for you, whatever it was.

You hadn't peed much today, we started to increase your fluids...that always worked historically.  But, historically, you weren't dying.  Your swelling got worse over time.  I was on sibling duties today, driving everyone to their activities after school.  By 6:30 Aba called to tell me it wasn't the flu.  I remember being in the car, I remember the immediate lightbulb that went off in my mind.  It took me an entire 2 minutes to replay a conversation with Dr. Wendy in my head from when you were a baby and I had asked her, "how would I know if you were swelling and dying"...she said "you would know", "the fluids have nowhere to go and they just flood the body".  I knew what we were dealing with. It wasn't the flu, you weren't sick (but I would continue to go down a list of potential maybes).  

By the time I got home from the last activity, it was around 7:15pm I walked into your room and asked everyone what the dispatch health person said about your rash.  No one understood what rash I was talking about.  It was on your cheeks, your hands, your legs.  It came out of nowhere, obviously between the time Nurse Paige left and the dispatch health people left.  Dr. Kelly crossed off all of my ideas.  We were left with my only option.  You were officially dying.

We went back and forth with hospice multiple times.  It was horrible.  I felt so lost, so alone. I was too afraid to talk about it on the CDKL5 support page because years earlier a similar situation happened and it turned into an awful ordeal.  People don't understand.  In their defense, they just can't until they see it themselves.  I didn't want to be told: "I was giving up".  It was obvious this was not my decision.  This was your body communicating it was tired, it was sick, it was unable to heal, it was shutting down.  Your father couldn't wrap his brain around it.  To be honest, I couldn't either, BUT someone had to be your voice, someone had to respect the situation, plus, I would have forever to deal with my emotions, so while you were here I was determined to just focus on the situation and the facts.

By the end of the night, you still had a fever, you were on oxygen, your heart rate was elevated, you were so very swollen, and I said the words to Dr. Kelly, "I am wondering if this is just her body shutting down".  We would stay the next 2 days at a crossroads between hospice and essentially the land of nothing.  Your father and I didn't talk, really, we hardly even looked at one another.   It was a dark and lonely place to be. It was tense, the house was essentially falling apart.  Your siblings knew you were "sick", they came to your bedside every day.  We didn't tell them anything more than you were "sick" at this point.  It hadn't even been 2 months since Saba died, we couldn't tell them you were dying just yet, especially when aba hadn't come to terms to deal with it either.

I am just sorry there was so much turmoil in the decision, in the air, all around you.  We only ever wanted you to be comfortable and at peace. I am sorry it took us a few more days to sort our emotions out enough to best help you.

Until tomorrow baby girl.

Love always, 

Ema

January 20, 2020

Dear Sonzee, 

Today is one of the more challenging days to recollect.  It is the one that left me feeling in limbo and completely unbalanced on that tightrope I had been walking your entire life.  It felt as if I was walking on a disappearing rope and at any moment I would plummet.  Today was the day that your fever was still present and no specific flu symptoms presented, but instead, nurse Paige began to get concerned over your oxygen levels.  Your poor cheeks were turning a light shade of pink and when I returned from work and checked on you, your eyelids looked like they were getting puffy and you were on oxygen.  You looked exhausted, and you were just sleeping in your bed.

By the nighttime Aba went to play hockey and it was me and savta holding down the fort.  You started to vomit around 9pm.  I panicked...vomiting was no longer a common Sonzee symptom unless your tube was misplaced.  Savta came to the rescue to help me after I literally had to call her over the phone from the other side of the house.  It wasn't just a small amount of mucous either, it was a ridiculous amount of that awesome bile you puked all over Auntie A circa 2016 when we first got you on the NJ tube and those residents learned really quickly that it is best to start really slowly with you.  You were so lethargic, you were so limp when I lifted you up. Your eyes wouldn't/couldn't even stay open. You looked so sick I didn't have the heart to do anything but change your clothing and blankets and wipe you down.  I could tell you were not up for even a quick bath.

I rationalized that it was my fault because I must have given your meds too fast.  I had not even flushed with water because I was so afraid to cause you more discomfort.  For the remainder of the night, I sat in that uncomfortable red Ikea chair next to your bed switching off between working on IEPs and binge-watching the entire show of "Cheer" on Netflix.  Throughout the last two weeks of hospice, I would repetitively ask nurse Paige how on earth she never said a word about how awful that chair was.  I will forever feel awful for not providing something more comfortable for your nurses.

Tomorrow would be the day that I would start to go down the "what if" spiral.  It would be a day where your father and I would start to butt heads over the potential course of action.  It would turn out to be one hell of a day.

Until tomorrow.

Love always, 

Ema

January 19, 2020

Dear Sonzee, 

Today, a year ago, the questions began to flood my mind, but overall I wasn't overly alarmed.  There was some confusion within my mind because there were no other symptoms besides a ridiculously high fever that we couldn't get you to break.  We did round the clock fever reducers but your temperature fluctuated between 100-103.6 and you felt frozen.  Mrs. Zupnick asked if your toes were purple, and how blood flow was, I remember you were paler than any other color, but again, nothing overly alarming.  I texted Dr. Kelly, she went down the list of symptoms and I crossed them all off.  We considered starting you on Tamiflu just in case, but we both decided that since you had no other symptoms besides the fever and other viruses were going around, it was best for you to not have another med that was just going to be a crapshoot. 

You were "blah", but honestly so much of the last six months that would have been exactly how I would have described you the majority of the time anyway.  We let you stay in your bed and just rest.  I googled the timeline of flu about 600 times and it wasn't making sense why you only had just a fever on day 2.  Ironically, I was actually feeling relieved that you hadn't started with a runny nose, cough, or any other symptom because I was going to assume that meant it wasn't the flu...but also I didn't exactly consider it to be death.

Your seizures stopped along with the start of your fever, so whatever it was we knew your body considered you sick...regardless if it was just the way your body was handling stress or a real illness. Today you rested...but tomorrow...tomorrow is actually the day that my mind started to wonder...it would still be another 2 days until there was a shift in my thinking...

---

I often wonder what you must have been thinking or truly feeling during your last days.  I know deep down we made the very best choice to keep you home.  I have zero doubts in my mind with the information that would soon follow that everything we did was not only in your best interest but absolutely the right answer.  My heart breaks the same regardless of those facts.  I won't ever be okay with you having to endure all you did.  Still, even as peaceful as we attempted to make your last days of life I wish your ending could have been different...less chaos, less pain, and less confusion (so we could have possibly done better for you).  

Until next time.

Love always, 

Ema

50 Weeks

Dear Sonzee, 

Today marks 50 weeks. In just 3 days it will be your Hebrew date anniversary (yahrzeit). In 2 weeks and 2 days, it will be an entire year on the English calendar. To think I have had an entire year to figure out what we will do to honor the day(s) and nothing has been planned or even considered makes it even more obvious how much of me was placed 6 feet under the ground with you on that freezing cold day last February 3/8 Shvat. I gave up trying to find the perfect yahrzeit candle holder and went with this stained glass flame holder...at least I think it is glass...and it seemed better than nothing, but nothing felt like it was good enough for you.  

I have spent close to a year writing all of the blog posts that are still in my mind that I wanted to share over the next few weeks, none are written, and I am still unsure I am ready to write them. I tell myself that maybe I need to just get the words out of my mind to help me move forward, but part of me knows that even if the words are written, I will relive it all every year to come. I started to think that maybe it was all in my mind, the anticipation of all of this, the weeks leading up to your actual death, and our journey on hospice, but no, it is turning out worse than I even considered.

One of the biggest issues is that today also marks your oldest sister's birthday. Can you believe she is 11 today. 11 years ago today was such a joyous day. It was the day Aba and I became parents, it was the day I looked forward to since I was probably the age she is turning today. Last year was so exciting as we anticipated her completing a decade of life...and then...you spiked a fever that turned out to be the beginning of the end of your life, and well now today is never going to be fully the same. I am really trying my best to make today the best I can for her. I set up the counter like I always do and hung the birthday cupcake on the front door. The chalkboard is ready for her picture and I even put new birthday yardstick signs in the front yard. I will do my best fake smiles throughout the day, and maybe some of them will actually be genuine, but in the corner of my brain is the dark cloud of what today meant for you, her chooper bear, the little sister she is having such a hard time missing.

50 weeks ago today on the Monday that would be January 20, 2020, was the day it started to click in my mind your relentless fever was less likely due to a cold or more specifically the flu. It was the day it dawned on me you didn't have a single other symptom besides the fever. My mind immediately went to the dark place and I told your father it was CDKL5 and I knew what it meant. He wouldn't even consider the conversation. Your poor little body began to retain fluid, it started in your eyelids and your face. The next few days were a real-life living nightmare. I want to say that I wish I could forget the events of what unfolded between the last 2 weeks of your life, but I wonder in reality if that would be worse.  

There is a ton of snow showing in the weather forecast for Bear Pines this week and into the weekend and part of me just wants to escape. Your oldest brother fractured his hand this weekend, and so now I guess we don't have to fully work around his hockey practice schedule. Zoom is still an option for everyone except Noam for school, and it would only be Friday they would be missing in any case. Maybe we would head up partway through the day and they won't have to miss much? I am not sure, but I know I need to escape, even if that isn't the best or right thing to do in terms of dealing with my grief. I could use some freezing temperatures and a complete change of scenery to distract my mind. 

Anyway my baby girl. I hope you are staying out of trouble and doing well. I miss you beyond words and wish I could see you through a special window.

Until next time. 

Love always, 

Ema

49 weeks

Dear Sonzee,

Another week has passed.  I say that like it happened slowly, but it was more of a quick blink, and Monday, here we are again.  I feel like a toddler having a tantrum not wanting to cooperate in terms of not wanting the time to keep moving towards your Yahrtzeit.  Similar to your little brother last night when we tried to put him to sleep.  He was kicking and screaming and refusing to stay in his bed, I had to bring him back what felt like 20 times, trying to bargain with him that tomorrow he would be going to school.  I was even singing those (ridiculous) super JoJo or Jay Jay songs (can't remember which character and I never get it right) about the first day of school.  It wasn't working out so well.  Anyway, I am totally him with this whole concept of it getting closer to the 8 of Shvat, February 3, and week 52.  Just typing that (as I have said so many times) makes it hard to breathe, brings tears into my eyes and makes me panic.

Aba has asked me no less than 3 times in the last 24 hours (and more times within the last 48) about what I want to do on the 8 of Shvat, (you know the whole Jewish anniversary date that does actually matter) which happens to fall on January 21.  In case you didn't know that means it is only 10 days away and neither emotionally, physically, or any other manner am I at all prepared for it to happen.  I ordered some shiny pinwheels I was thinking of placing at your grave and while I was at it, I threw some birthday yard signs since you know we have this whole insane whammy of Sonzee dates headed our way.  Just to get it out in the open as a reminder for me, the Hebrew anniversary of your death is January 21, your English anniversary is February 3, February 4 is your Hebrew birthday, and February 11 is your English birthday.  I suppose it makes it easier to just be beaten all at once, but maybe being able to come up for air would have been a nice idea too.  But honestly, this is ALL way TOO much for me to process. 

Maybe it is just the fear of the anticipation of how everything will unfold that has me in the mental space I am finding myself in?  Maybe this is just how January and February are going to be for me for the next few years? Maybe forever?  I guess time will have to tell.  

I realized that as of 11 days from now a year ago, it was the last day I physically stepped foot into FBC to work.  I find it almost poetic that will be going back in person on week 52 since you left us.  I feel it as another gentle push from you to tell me it is time for me to start moving forward.  (I really would prefer not to move anywhere-but I am going to attempt to try, although I can't guarantee I am going to be able to keep it together as much as I would like).  Today starts with your siblings' first day of in person school in almost a year.  It is certainly a mixture of excitement and fear.  I know deep down it is for the best, but I also worry about them, the typical regular dramas of school, and then the added component of their grief that they still have challenges articulating.  

We all went to visit you yesterday, it was the first time we all went since the unavailing of your monument.  Your monument looks as beautiful as I envisioned it would as we drove into the cemetery, and it stands out like I had hoped, but it's still hard for me to look at your name written for all to see.  I realized how obvious it is you are a child amongst all the headstones with large last names written across the tops of stones.  It just adds another level of sadness for me.  Tzvi took 4 rocks to paint for you, he made sure they were huge, although I was sort of against that because of clutter, I let him do it because clearly, he has some artwork he would like to share with you.  Noam as usual fell asleep on the way to see you and then at the carwash asked if we would see you.  Laeya and Meena are back to playing with the playmobile items they store in your room. I have been trying to gather my favorite clothing of yours to have a quilt made but every time I try to start I get a few clothing items in and have to stop.  I guess a year is still too soon for me.

Anyway, baby girl, I love you and miss you!  I hope you are staying safe and out of trouble!

Until next time, 

Love always, 

Ema

Time

Time.

I find the term so difficult to grasp.  It feels like it has gotten more complex and more abstract in the last year.  I can't figure out how to make sense of it.  Time in my mind seems to be such a contradiction.  It keeps moving...it stops...it keeps moving.  I wish it would stop but I want it to keep moving.  The world essentially keeps moving but I am stuck, I can't move, scratch that, I don't want to move, but I also don't want to be stuck. I just am. 

A year ago time was moving at a day's pace.  The days felt like they had gotten faster with so much going on and so many things to balance, but it was normal.  Life with kids, working, activities, etc. was fast, but it didn't stand still, and then February 3 happened.  Time stopped.  The days have gone by, in fact, 339 of them (almost 340), but my brain hasn't left that moment.  My perception of time has stopped, but the reality of time continues to move on, speeding by in fact at what feels like a record pace.  I want it to stop, I want it to rewind, but I don't. In fact, I want it to speed up at times to maybe attempt to feel better, to get further away from the feeling of its newness.  Will it ever feel not fresh?  Will the conversations, minutes, and visions ever leave my mind?  Do I really want them to?

The clock continues to tick by.  I know exactly what is on the horizon. Time is going to catch up with me eventually. I can't ignore the amount that has passed, I can't ignore what it represents, I can't ignore what it means.  Days have passed, it is accumulating into just another year of life that has gone by for everyone...except for Sonzee physically and my mind.

48 weeks (a day late)

Dear Sonzee, 

Today was just one of those days.  The one where life continued to get in the way and I didn't have a chance to sit down and write to you, and then, something insignificant set me into a tailspin.  In the last 2.5 hours, I have found myself rating a nonhuman shipping representative on the phone as a 1 for not giving me any form of assistance (in my defense I didn't ask to complete that survey), writing a nasty email that Hashem obviously felt I should rethink because the screen turned white and then vanished as I was trying to hit send, crying and being horrible angry over a shipment going to the wrong house, and having a meltdown because cabinet locks were not locking.  I know my emotions have nothing at all to do with any of the items listed above and everything to do with it being a Monday night grief group evening, it being another week without you, and it now, officially, being less than a month until a year has passed since you were here, and additionally it is a month away from the anniversary of your funeral.

I tell myself my emotions are appropriate for the "big picture", but then am beyond thankful for me hiding away in a cul-de-sac in Flagstaff so I can just hole up here and pretend life isn't what it is.  Gosh, some days are really truly indescribably bad, do you ever have those days missing us? Does it at all work that way wherever you are?  I sometimes find myself thinking my heart couldn't break more, that the pain couldn't get worse, but then, it can and it does.  Sometimes the grief eerily resembles so much of the challenges we faced with you here...I eventually got to a point where I stopped thinking things couldn't get worse or that something would change or that maybe it wouldn't get that bad...maybe one day I will reach that point with my grief.  Maybe I will eventually throw my hands up into the wind and ride the rollercoaster knowing the wheels are going to fall off the track and that no amount of harness support is going to keep me safe and no amount of padding to make the landing soft or pleasant. The last time I truly did that we know how it ended, so really, I am afraid to ask, but can it really ever be worse than that?

The thought that this is lasting forever sometimes feels like a fresh punch into my chest.  I feel like I need to always be in reach of your oxygen tank for these moments because I am sure if my stats were being taken my oxygen would be well below 90.  It is literally difficult to take in deep breaths and I have to almost concentrate extra hard to ensure I keep breathing.  It resembles labor and delivery, except there is someone there reminding you to breathe, and eventually your reward is a little tiny life to snuggle into.  In this case, I am sitting at a table, alone, in the middle of the night, missing you horribly, and unable to stop the tears and pain resting deep in my heart, with our last snuggle being over 11 months ago.  

If I could be so blunt baby girl, I could really use a visit or sign from you over the next few weeks.  If you could pull something off, maybe it would be enough to get me through another year without you?! I miss you and love you so much!

Until next time.

Love always, 

Ema

11 months

Dear Sonzee, 

I almost panicked last night when I thought I had forgotten to place your 11-month rock on Thursday because the 3rd was yesterday, but then I was filled with instant relief when I realized it is actually January 3 today.  Either in between your brother's hockey games or on our way up to Bear Pines I will be sure to stop by and add this one and final glow rock to your collection.  I had not been so sure if I was going to continue with the monthly rocks for year 2, but then I was on Amazon and came across a metallic rock kit and the decision was made for me.  In just one month, you will get to see the first one.  The box showed a silver rock with rhinestones in the shape of the letter "S", your siblings and I all noticed it after we each looked at the box on our own and got excited.  The only current fight is now who will do the first rock.  I think I might choose based on who doesn't argue about it, which means 2 of your siblings have already been eliminated.

Today already marks 3 days into the new year and 3 days into January.  I am feeling so conflicted about my feelings about this month.  Your biggest sister will be turning 11, it is my birthday month as well, and yet I have zero desire to celebrate anything happy because it also happens to be the Jewish date of your death in 20 days (which besides lighting a candle for I might actually ignore because I don't think I am mentally prepared for that so soon).  I was worried if you died on Laeya’s Hebrew birthday it would be awful because it would forever hold a shadow over her milestone events, so while I was relieved when you chose mine instead, you starting your decline on her English birthday isn't an easy event to just pretend didn't happen as it is.  It thankfully isn't one she will have to realize sends a dagger into my heart, but it makes the idea of decorating a week in advance and actually celebrating nauseating. I guess it is now amongst one of those dates that are now significant for your life.  

A year ago today we saw Dr. Williams and we were set to see her again in a month.  Your labs looked great, except those questionable values...but this time it was a different set since we offset the others with the iron infusion.  A year ago 12 days from today would be the last time you saw Dr. Wendy in her office.  She couldn't say from that visit that "you had less than 6 months to live", and yet a year ago in 15 days from now, we would embark on a journey where we would say our forever, see you later goodbye.  I know all of your doctors miss you.  I know they are haunted by the way everything unfolded, maybe even more so than I, because my gut knew first.  

This week we are going up to Bear Pines for one last virtual week of school/work.  This month is going to get exponentially harder and yet easier at the same time.  In 8 days your siblings, all 4 of them, will be going back to school in person for the first time in close to a year.  This means that I will be forced back into some semblance of normalcy.  My heart is panicking over drop off.  My routine was always to drop your siblings off and then go back home to pick up you and nurse Paige.  There won't be anyone to come home to before I have to start my sessions, no Sonzee to take to school.  Your backpack hangs on the hook in your cubby in the garage, unemptied from the last day you came home, your shoes still fill the bin below, and your jackets still hang there as well.  

It will be quiet and nice to work from home, but I am honestly really scared about that at the same time.  You died and corona restrictions began right away and I haven't had a chance to even be by myself, so I am looking forward to that on the one hand but scared to death on the other.  I do look forward to being able to go back to our longer visits together, but the whole moving forward with real-life thing makes me a bit sick, scared, confused, guilty, literally every emotion there is a word for in the English language and then the others that don't have any words to describe them.

I wish one of these monthly letters to you would be the last one I would have to write because your absence was reversed or somehow they could start over because I could see you for even a minute to restart the clock, but I am pretty sure that isn't how this is going to work.  This is the way it will be for my forever, counting up the moments and days since I last gave you a kiss and held you in my arms and having no idea about when we might be reunited again.  I know the last 11 months have been the best you have ever gotten to experience, for that I am eternally grateful for, but my heart hurts even more than it did the day you left.

Love and miss you always.

Until next time.

Love, 

Ema