January 31, 2020

Day 8 of Hospice

Dear Sonzee, 

Today would be your very last Friday and very last January you would ever live during.  Every morning this week before school your siblings all came to give you one last kiss, just in case anything would change during the day.  We asked each of your siblings what they wanted in terms of being notified if something happened, so we knew their wishes.  We made sure to ask them so they would know and understand we respected whatever their wishes would be and aba and I didn't want to force our own thoughts and wishes for them onto them.  Every morning since Monday they would come to your room and jump into bed.  I took so many videos and pictures, I am so happy I did.

Today would be the last walk you took in your stroller.  Aba was adamant he and Nurse Paige take you out, I waited in your room for your return.  You were not in the most comfortable place today, and after your walk that had not really changed much.  It was so horrible to watch you be uncomfortable.  Today was the beginning of the most hellish weekend of my entire life, there is really no way to explain everything that you endured your entire life, but watching you die, while we gained peace and comfort for you, was absolutely the worst experience of my life.

You had another bath, I think we did them at least daily as part of our routine and to help with keeping you comfortable and ensuring that you were always in clean pajamas so you felt your best.

Today I asked myself if hospice was really comfort-care.  I know it was, and that it is, but today you were so agitated I didn't know what to think.  There was a point today where I doubted everything we were doing.  I struggled with wondering if you were just hungry and not actually dying and we were killing you.  I considered throwing you into the car and driving as fast as I could to PCH for them to fix everything and make you better.  I felt like I was going down one of those water rides that resembles a toilet, I was just spinning.  

I was so upset about all of your seizures today.  I couldn't understand why you started to seize again and I HATED that they were making you uncomfortable.  You were on 10ml an hour of Pedialyte and everything seemed so miserable for you.  We had exhausted every medication in the hospice arsenal and nothing seemed to be working, it was absolutely horrific for both of us.  I am so sorry things got so out of control and I hope you don't remember how awful today was.

I had not googled one thing about dying or the end of life, and it wasn't until after I started to doubt every choice we made that it was shared with me that everything occurring was normal for the end of life.  I could have hurt every person who knew that but felt they were protecting me by not sharing things until they happened.  I made a vow at this point to make sure any of your friends' parents who enter a hospice journey are at least asked if they want to know all the details beforehand so they have some warning. It feels like the least I can do in offering support because it really isn't one of those things that you want to just learn on your own.

Today was definitely one of the most horrible days, but this weekend would prove to me that it could always get worse.

Until tomorrow.

Love,

Ema

January 30, 2020

Day 7 of Hospice

Dear Sonzee, 

Today was your last Thursday.  You can guess that again today was filled with an abundance of hugs, cuddles, kisses, and love for you from so many people.  On today's list of squeezing in a lifetime of memories into a small amount of time, it was a family hand mold.  I was searching for hands mold kits on amazon two days ago when I came across a kit that was for an entire family.  I did a moment of hesitation and then it landed in the cart and then into the house.  I had a lot of naysayers, (echem, Aba), but I was determined to master this challenge, and not to brag, but boy did this mold turn out to be the most amazingly beautiful item our entire family will ever create together.  Thankfully pop-pop took a video of the majority of it, and it one of my most favorite videos of all time.  So much chaos, laughter, insanity, and screaming that it's hard to watch it without laughing and smiling the entire time.

Today was the day that I arranged how we would be giving your GJ tube syringe to those who would be handling your care after you died so they wouldn't struggle with removing it from your body.  Really it was Mrs. Zupnick thankfully who took care of it all, all I did was send her a picture of the tube itself so she could explain it best.

Today your rash came back.  It was on your cheeks mainly this time.  Bright red and also puffy.  I was really wanting to know what the rash was, it didn't matter, but I needed to know.  Your eyelids also began to get puffy again, it was so confusing to me because you had next to no fluids going into your body at this point.  In the end, I think we attributed this rash to the liver failure you were in, but nothing really ever confirmed that theory.

I had been really good about screening all my messages, phone calls, texts, etc., but today one of those random ones fell through my screening.  I stupidly thought because the person who reached out had a child diagnosed with CDKL5 it would be a message of comfort, but sadly, it was the complete opposite.  They went on to share with me that they knew exactly the position we had found ourselves in, except, she was selfish and decided to keep her child in the hospital so their child is alive, but next time they would do hospice.  It was at this point that I stopped caring about comforting others, or if I sounded like a b*tch, and simply wrote back that "this wasn't a choice, but thanks."  I no doubt assume they meant well, but sometimes (really 100% of the time) less is more, and not saying anything is better.

Aba and I spent months discussing choice regarding placing you onto hospice or not, in the end, our conversations were pointless because you made the choice for us. I will always be thankful to you for doing that for us.  I just wish people wouldn't say stupid things not understanding entire situations.  I wish people understood that hospice can be a choice that is made when your backs are up against the wall and there are no other options besides hail marys.

Today was the day we were listening to relaxing music during the day and Uncle Mathias looked like he had fallen asleep sitting against the wall, eyes closed, fully relaxed, only to abruptly jump up and literally run out of the house like Forest Gump.  I wish I had saved the camera recordings from the house and your bedroom so we could watch that moment forever on sad days.  I think we laughed for literally hours and days over this.

Today was the day your body for some reason would begin to seize, something it had not done since January 17.  I was so angry, I was so upset.  I didn't tell anyone about the first one that I saw except nurse Paige saw it as well.  Eventually, we told Aba.  It was really disappointing.  I had no desire for you to be seizing while you were actively dying. That was not how things were going to go.  Your body was so tired and weak it was even more horrible watching you seize than it had been your entire life.  Seizing was your claim to fame, you seized like a champ, you perfected that art, I wouldn't let it go down with you half hazardly being able to seize.  I was really angry with G-d over this.  I just wanted you at peace and in complete comfort.  That was not on my list of things allowed during your last days on earth.

Today my eyes and face would start to turn a permanent shade of red myself as the tears were challenging to keep at bay.  I stopped allowing as many visitors from this point forward because I wanted everyone to remember you awake and in your typical Sonzee manner.  I had thought it was already bad, but this weekend would prove to be some of the most difficult days of my life.

Until tomorrow.

Love always, 

Ema 

                                       

January 29, 2020

Day 6 of Hospice

Dear Sonzee, 

Today was filled with much of the same of the last couple of days.  Lots of cuddles, more visitors, and your room filled with love.  We have some of the sweetest pictures of you and Noam from today and a video of you and Tzvi that if I ever have the courage to watch the entire thing I think I will give myself a medal.

Today I received a text message to confirm your monthly TPN appointment with Dr. Williams on Feb 4, I replied No when it asked if we planned to attend.  It took over an hour to press send.  Today your brother was invited to skate with the 10u kids for the upcoming Monday, February 3, we said yes to him going.

Today I was really struggling with this whole hospice ordeal.  On the one hand, I was petrified for life without you, but on the other knowing you were dying and watching the process is just something I won't ever fully be able to recover from.  I wish someone would have just moved in with me and explained every aspect of the process.  Someone close to me reached out today as if G-d told her what I needed to hear and it summed up my feelings exactly.  It was nice to not feel like I was alone. In terms of my ability to cope with the situation, today would be the last day that I felt like I was holding myself together.

Tonight after my bath as I walked by your room I heard bubbie and Tzvi playing with you.  Tzvi was having a tough time with his feelings and this whole you dying process.  He and bubbie decided to go on a trip wherever he wanted and chose "Sonzee land".  Like I mentioned earlier, if I can bring myself to rewatch that video in its entirety it will be something special.  I recorded the entire 8 minutes without him noticing, standing to the left of the doorway.  I had ironically taken the bath to relax, to collect my thoughts, and to cry all of my tears alone, but apparently, I still had more.  Tzvi gathered all of your stuffed animal friends and bubbie had a couple herself and you were right in the middle. "In Sonzee land, you could do whatever you want".  After he played with you, he read you books.  My only regret is that he asked to sleep with you and I said no.  It was partially selfish because I didn't want to give up my spot next to you tonight, it was also because I was torn on whether it was appropriate since he was an 8-year-old boy and you were a 4-year-old girl.  Did appropriate even matter anymore? What is really appropriate in any case when your 4-year-old is dying? I don't know why I didn't just pull out the trundle bed and let him sleep there, I wish I would have. 

Today would be the last day you were as awake as you were and it would be the last Wednesday you would spend in your bed. It would be the last day where I didn't spend part of the day angry at the situation, G-d, and over my notions of how comfort and reality don't always match up...but I will save all of that for tomorrow.

Until tomorrow.

Love always, 

Ema

January 28, 2020

Day 5 of Hospice

Dear Sonzee, 

Today would be the last Tuesday you ever saw.  Today was the day Aba and Auntie A would go cemetery hopping and shopping in order to find you your forever home.  I knew my limitations.  The first was that I couldn't leave your side, not when I didn't know how much time you would be here for.  The second was that I just simply wasn't strong enough to do it.  The third was I just don't do cemeteries (but really who does?!). Auntie A was so amazing, the minute I said I wasn't going, she jumped up and said she would go, I didn't argue, I honestly didn't even feel guilty about it (I still don't).  They drove to every Jewish cemetery to make sure they knew all their options.  There was very little I cared about, I just wanted you to be near a child if there was no designated children's section.  Aba sent pictures of what would end up being your current space, I could hardly understand what I was looking at much less say whether I agreed or not.

I will say for such a horrible task, the two of them did perfectly.  You would be diagonal from a little girl, Charlotte Avery, who happens to be Meena's age, but sadly died within a few weeks of being born.  I would have preferred she be next to you or behind you, but those spaces were already taken.  Auntie A said she felt a calmness come over her when she stood in your spot and so she knew it was meant for you.

Today was the day that your father would sell the stocks of the company that had a trial drug for CDKL5 that he had invested into so that one day he could pay for your wedding but instead, we were now going to use to pay for your funeral and the related costs.

Today you had more visitors, more people who wanted to snuggle you and say goodbye.  I believe today would be the last day you would go into your swim spa.  Aba took a lot of selfies with you today and I took a ridiculous amount of videos and pictures of you and your siblings.  Noam spent the day sitting on you or next to you in bed.  He made sure your paci was always in your mouth and he gave you lots of kisses and snuggles. 

I received so many amazing pieces of advice on what to make sure we did with the little time we had left, so today after your bath was the day that Nurse Paige would make sure you had one of your claim to fame boingy curl ponytails and we would give you your very first and only hair cut.  We put your hair in a little hair tie and one of your S bows, the purple one, and cut.  It was such a great job because we did it from underneath in the back so no one could really tell what we did.  That helped my heart for the next few days.  

Today was another day closer to our last day and we did the best we could to make the most of it.  It was a hard day emotionally, but tomorrow would be worse.

Until tomorrow.

Love always, 

Ema

January 27, 2020

Day 4 of Hospice

Dear Sonzee,

Today was a Monday. It would be the last Monday you would be alive past 1:08pm.  Today there is one of my favorite pictures that aba must have taken early in the morning of you and me sleeping together.  I also took a ton of selfies of us today.  Today I was convinced to celebrate your 5th birthday.  I had been ignoring the suggestion for a few days, but then your friend Emma and your friendship circle family planned it all so really we just would have to be in the house, so I obliged.  That stupid pink shirt with five written across it that I received a week and a day ago when I allowed myself to believe you would be turning 5 was taunting me on my desk.  I guess it turned out to be a premonition and not just one of those fearful dreams when last January I dreamt I ordered you your birthday shirt and you ended up dying.

You had more special visitors today.  You were certainly so well-loved, that I know for sure.  I didn't really want to celebrate you turning an age you weren't really going to be, but you appeared to enjoy it, so maybe it was the right choice.  I only invited your bestie Corrinne, and on short notice, but she popped right on over and in a perfect sequin red shirt no less.  It was as incredible of a birthday party that could have been considering everyone knew you weren't officially going to be turning 5.  We have video and pictures galore, I have 2 albums from it and an entire video.  I haven't looked at them, and I can't watch the video.  I don't really need to because I remember it like it just happened, and I don't want to because it is just too hard. 

I couldn't bring myself to put that dumb pink shirt on you, so Nurse Paige did it for me.  Seeing you wear it was hard enough, I just couldn't dress you in it myself.  Your sisters sang "a million dreams" and everyone went through every emotion possible.  I took a good amount of time looking around at everyone during the entire time.  There were sad tears, happy tears, smiles, laughter, you name it, it happened in that room.  Singing, dancing, everything.  We had a huge red 5 balloon, but we never got to take your 5-year pictures I had been planning in my head.  You had bouts of being awake between closing your eyes to rest, and everyone there took pictures with you.

Today marked a week of your feeds being turned off.  Every day you didn't have actual feeds was another day I was in pure shock and awe.  You looked so much healthier than you had a week ago.  You had more energy than you had in days.  You were almost yourself.  Today was the first of a few days over the last week of your life that my mind would tell me you were getting better, that you weren't actually dying.  Then I would remember you were perfectly content not eating and you were living off of just Pedialyte at way too low of a rate to actually sustain you.  I think those moments of reality were the worst slap in the face.  The mind games were so so hard to combat.  

Overall, today can be rated as a decent day.  Tomorrow would turn out to be a heavy heavy day.

Until tomorrow.

Love always, 

Ema

January 26, 2020

Day 3 of Hospice

Dear Sonzee,

Yesterday was the day we received the pending lab work that we had completed on Thursday night. They called during Shabbat and I will admit I answered the phone. They said everything I knew but didn't realize I needed to hear and everything we all knew aba needed to hear to have his “proof”.  All your typical CBC, run of the mill labs were normal. You didn’t have an infection at all...in fact, your body DIDN'T even think it was stressed because you didn’t have your typical leukemoid reaction. Simply put, it all pointed to what my instincts had told me almost a week ago.  It didn’t really make it any easier to digest, but it brought some order to the situation of the unknown.

We began to tell more people before we made it Facebook official. There were a few texts that needed to occur before we essentially let your Facebook followers know where your journey has headed.  That was a hard post to type, but more difficult was reading the comments that followed. To be honest, I still to this day, a year later can’t bring myself to read them all. There are still private messages, phone calls, and text messages I haven’t responded to or even read.  I just still can’t.

Today I started to pick and choose who would get what type of details and who would just get an overall update. It wasn’t meant to be mean, it was simply because this situation is a delicate one and people mean well, but people also feel they know best or that they have the answers.  Someone always knows better or would do it differently.  There were no answers. We did everything we could. We didn’t need people telling us there was more, or this is how they would or wouldn't do things when they had no clue what was really going on. We had always heard bonehead things be said throughout your life from people who meant well, and it is truly amazing just how comical some of the words and phrases are that come out of a persons mouth.

The majority if not all people who reached out to us offered prayers, thoughts, and tons of support.  There were a few outliers who thankfully reached out to just close friends of ours and asked them the more ridiculous questions, or made the more ridiculous comments to them.  We had people ask if we had consulted with a rabbi, or what a rabbi's thoughts were on the situation.  I still don’t have a nice way of replying to some of the things people have and continue to say, so I just choose to not respond at all. Thankfully no one actually asked me to my face.  To be honest, whether we did or did not speak to a rabbi is not a single person's business, but I will leave it out on the table that when I say we did everything we could for you, and that there was nothing more to do but support your body, we had the blessing of every doctor and orthodox rabbi with knowledge in the complex arena of pediatric care like yours.

Today you looked so much more like yourself. The swelling was nearly gone, and you received nebulizer treatments and lots of cuddles. Your Pedialyte was set to 20ml an hour and you were still coughing.  Someone wise came to visit today and we turned off your feeding pump for a bit and you seemed to relax.  Aba eventually turned it back on.  We were in a silent battle with the pump, but I ultimately let him do what he needed.  You had a day of so much love and important visitors. I took tons of pictures and videos today.  I wish I had looked cuter myself, but as I said then and still do, considering the circumstances I guess it is what it is.  Hospice of the Valley sent a photographer out to see you today.  Aba took you to the pool, I couldn't go in, but I held your foot and there are pictures of me with you both.  That pool was always your happy space.  After you swam aba felt a huge wave of relief.  His biggest fear was not being able to take you in the pool one more time.  Until you lost joy in it, he took you in.  

After your time in the pool, I wrapped you in your bunny rabbit towel outside on the grass.  Your siblings all joined us and we would take our very last professional family pictures ever.  I regret more than anything my at the time casual stance of embracing the moment as it was.  I felt so vain for even considering we dress up or look cute.  I wore a pretied scarf to cover my hair...I didn't even bother to try and look more than I felt. Your siblings made their usual complaints and sighs over smiling.  I remember through gritted teeth I said "these are the last pictures we will have with your sister, so smile".

At times today, you were delirious.  You would randomly smile...we wondered what you might be seeing.  Today was the last day that you used oxygen.  It would be the last time I would put the pulse oximeter on you and the last time I would use the numbers for any reassurance or information.  You had started to be visibly annoyed by the oxygen tubing and our focus was your comfort, so we listened.  It was scary.  

Your life was hard, the last week was harder, but the final week with you would prove to be the hardest.

Until tomorrow.

Love always, 

Ema

January 25, 2020

Day 2 of Hospice

Dear Sonzee, 

Today was Shabbat.  Auntie A came over in the morning.  She would later tell me that it was on this day that she realized the gravity of the situation.  The hospice nurse came to check on you and was so respectful of Shabbat.  He answered all of our questions the best he could and anything he needed to find out he went outside to call about and came back with answers.  At one point after he left, he ended up driving back to let us know some other information.

You finally started to look more like yourself today with much less swelling.  Thank g-d the medication worked.  The negative of that is for the rest of your life it would mess with our minds that you were actually doing better.  We would have to remind ourselves that while yes you looked significantly better, the reason for that was the significant decrease in your fluid intake and the lack of feeds.  The feed part was the most challenging concept for aba and me, but like hospice explained multiple times, it is like when you are sick with a nasty virus and you have no desire to eat, if we made you eat it would be worse.  (Aba did occasionally try to increase your fluid rate, but would quickly realize your body just couldn't do it anymore).

Today hospice of the valley came out to do your fingerprints and some hand and foot molds.  The full circle experience was that one of your nurses from PCH happened to be the person to come and do those molds for you.  I wonder if she felt some sort of completeness to be able to do these for us?  For me, it felt comforting and fitting to have someone who had cared for you be the one to take your last foot and handprints. Today was also the day that Rabbi Rodal came over to do the priestly blessing for you, it would be the last time you would hear it.  

After Shabbat ended I gave you a bath, you were so tired, you slept through it.  Mrs. Emily and Mr. Andrew came to take our pictures.  My only regret is that I didn't bother having everyone wear anything matching.  My brain was saying just keep everything real.  I wish I would have at least had you match your sisters one last time.  With a disaster in the background of almost every picture, we took our very last set of professional complete family pictures by our friends.  They are the pictures I will cherish forever, and will probably be the last set I will ever hang on the walls if I can ever bring myself to even do that.

Today was a successful day but would be another day closer to the day you felt we were ready for you to be able to leave.

Until tomorrow.

Love always, 

Ema

51 weeks

Dear Sonzee, 

This week has been a challenge to put it simply.  Today marks 51 weeks since you left us, but last Thursday we lit a candle to honor a year on the Jewish calendar.  I don't quite understand how there could be such a large amount of time between two of the same dates, but I didn't create the calendars so here we are.  I feel like the 13-day difference is way too much, especially for year one, but maybe also for every year yet to come?  Maybe the irony will be when I find myself disappointed at the dates aligning in the future, on a year I have to identify because the thought of looking at years to come of either of your anniversary dates makes me physically ill.

Last Wednesday I placed a solar light next to your monument since your candle and bench have yet to arrive at the cemetery.  I also placed one next to the rock in the front yard.  I decided the one in the front yard will be remaining, and from now on I will just be making gardens out of solar flowers with different insects or birds, like the one now that has a butterfly.  I think these will actually have a chance at lasting considering they only require the sun (we shall see).  

On Thursday we gathered at your grave to say some psalms and mourners kaddish.  It doesn't get easier having to gather on your behalf with a stone as your stand-in.  I visited you 3 different times, for some reason, I just needed to be with you as much as possible.  After the last visit, with your siblings, we drove up to Bear Pines.  I had to get away, I really tried hard to not run from reality, but in a sense I am still honoring my pledge to not run from my grief, because my grief said, you need to change your scenery.  And scenery change it certainly was.

On Friday your siblings played in the small amount of snow that was around the house, by Saturday morning we were in a winter wonderland, complete with the ability to make a mini hill for sledding, multiple snowball fights, and for building snowmen, we made 4 little ones. Snowmen building is definitely not my strong suit.  The ice rink has turned out to be quite the fail, so now it holds about 15 billion tons of snow and in April when the snow melts, aba and I are going to level the land and figure things out for next winter.  On Sunday we woke up to more snow than I can recall seeing happen within 24 hours.  We had to dig both aba and my car out of the driveway and your siblings spent the morning sliding down Ms. Bonnie's driveway into the unplowed street.  Overall it was quite a successful weekend, except, the entire time my mind would remind me why we have the ability to disappear into a snowy Winterland whenever we want, and so as always, it was a double-edged sword.

You would have loved to sled in the backyard, you honestly would have loved the entire experience, unlike your baby brother who has an unspoken but well-known rule that if he gets snow on his face or his glove falls off it's time to go inside and get warm.  As long as he was distracted with sliding down a hill or attempting to walk through snow half his height, he was in heaven.  G-d forbid someone throws a snowball at him and aba or I had to retreat inside.  2/4 of your siblings brought their Sonzee bears, and all of us I am sure had you on our minds.

I came home to a box filled with beautiful amethysts, I will be bringing one for you to have, they are from Mimi's family.  I also received a beautiful bracelet from Mrs. Penny, it has a momma bear and a baby bear, and it is now part of my Sonzee jewelry ensemble, which seems to keep on growing.  I added 2 new items to that beautiful necklace that Kole's mommy gave me last year that has your picture etched into the silver circle.  I now have your little fingerprint that Hospice of the Valley did for us (ironically a year ago today), and a beautiful quote on a circle charm with 2 hummingbirds. The jewelry is another one of those second rate ways to make me feel like you are constantly with me.

Anyway, baby girl, I miss you beyond words.  I love you even more.

Until next time.

Love always, 

Ema

January 24, 2020

Day 1 of Hospice

Dear Sonzee, 

Today was the day we finally agreed that hospice was what was best for you.  The lab work I did to prove to aba that you weren't sick started to come back to us.  I was honestly (secretly) really nervous.  I was not sure if your body was going to play one of those tricks where your labs would look perfect and it would therefore leave aba still fighting that you were sick.  One of your biggest claims to fame was having an abnormally high white blood count when you weren't really sick, so despite my 100% outward display that I was sure you were dying, I still had a little bit of doubt, that maybe he was right.  I always said I was bound to be wrong at least once during your life...however, that time never came.

The basic CBC panel that would include the labs to indicate illness was for some reason pending when the first call came in.  Your CMP, the metabolic panel, and liver panel that we had just ran not more than 20 days prior for your routine TPN check was the first set to come back.  They indicated your liver was not functioning properly, your albumin, phosphorous, protein total, carbon dioxide, potassium, and triglycerides were all abnormal.  It was the first set of confirmation aba needed, but what he really needed we would have to wait until tomorrow to receive.

I didn't take many pictures of you today my love. I am sorry, but you were so swollen, you couldn't even open your eyes.  Two of your teachers from school called and asked if they could come and see you.  I felt anyone who asked, who meant something to you, was allowed and more than welcome to come and say their goodbyes in person.  Writing that makes the tears flood down my face, and while I never said those words aloud, it was the unspoken reality of the situation.  I warned them because you didn't look like yourself, I was afraid it would be too much for them.  They told me they didn't expect you to look great under the circumstances.  I took a picture of the 3 of you.  I haven't been able to look at it again until today.  Gosh, you were so beyond loved throughout your life. 

I think they came as the hospice nurse was finishing up admitting you, either that or right before she came.  Admitting you to hospice was one of the most unreal experiences of my life. I don't think I had been as up and down with my emotions over a 2 hour period as I had been during that meeting.  I think I said at least 300 times, "this isn't real".  It didn't feel real.  I couldn't comprehend what was really happening.  I don't recall feeling any sort of relief during or after you were admitted.  I just remember feeling like the rollercoaster was getting completely out of control.  

Your first dose of medication came to (hopefully) help you reduce your swelling.  You had hardly urinated for almost a week.  We were advised not to start your TPN or lipids that night after the lab work came in.  Your port was never accessed again.  You had not had any formula feeds for 4 days at this point.  You were somehow surviving on no more than 15ml an hour of Pedialyte around the clock. (all those times we frantically rushed you to PCH when your tubes would break proved in the end to have been unnecessary based on how little the lack of feeds actually impacted your ability to live)  We prayed in the morning you would be able to open your eyes and the swelling would be decreased a bit.  I texted Mrs. Emily and asked her if she and Mr. Andrew could come tomorrow night to take (one of our last set of) family pictures after Shabbat ended.  Hospice of the Valley also had a photographer coming on Sunday, but those were slated to be you in your Make a Wish pool.

We started to cram a lifetime of experiences and memories into however much time you were planning to be with us.  That was a panicky feeling, we just didn't know the timeline.  My Type A personality really struggled with the unknown.  Hospice told us it was up to you, it could be weeks, and some children live months on hospice.  We knew that last part wasn't a reality for you, but I at least hoped it would be until we accomplished the items on my checklist.  I had thought up and until now was the hardest part of everything, I would quickly be reminded that wasn't the case, and I should have known because things can always get worse.

Until tomorrow my love.

Love always, 

Ema

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