Sunday, May 31, 2020

Goodbye May

I am not quite sure why saying "goodbye" to May has me dealing with all sorts of emotions.  I wish I could pinpoint the exact reason why moving into June, just another new month without her, has me dealing with so many tears.  I wonder if it is because our fate for summer is still up in the air and normally our plans by now have been solidified for months.  I wonder if it is because deep down I have a sneaking suspicion that this summer is going to be the on the opposite end of anything I could have anticipated at the closure of last years.

I keep waiting for the day this all becomes easier to manage, where the decisions of life don't feel like they weigh 1000 or more pounds.  I keep waiting for the waves that are crashing around me to not come up quite as high.  Supposedly that eventually happens.  I guess it is still too soon for that.  I keep waiting for the pain to lessen, for the hole in my heart to fill up with something that maybe, just slightly, makes it feel a little more whole. I wonder if that will ever really happen.

In a few more hours the month of May will be another 31 days marked as complete for the year of 2020, and another 31 days that were spent without me being an active special needs mom.  It was just another 31 days that Sonzee never got to participate in here on earth, and another month she didn't get to make any memories with her siblings.  May was just another 31 days that were spent celebrating various unmet milestones, some that were known and others that we don't even know what was actually missed.  I wish it was as simple as wishing good riddance to something unwanted, but for some reason saying goodbye to May feels like saying goodbye to Sonzee all over again.

The Mighty Contributor

Thursday, May 28, 2020


Three days are remaining in May.  I really dislike this month in general because it has always been the month of her 28-day hospital stay.  The number of consecutive days never did get trumped, but there were a few close seconds.  The month of May did have its perks, like the fact that for some reason the last week of the month would start her on some sort of seizure vacation until around the beginning of July.  Sometimes she would go close to the entire month span without a large seizure and only have her millisecond drops or spasms, sometimes it would be days.  Whatever it was, we never had a reason, it is just what happened year after year from 2015-2019, every single end of May.  I hope wherever she is that she has been enjoying seizure freedom for the last 16 weeks 2 days and 21 hours, if not I will have a lot to take up with the upper management.

On Monday it becomes June, another new month to start without her here.  It also happens to fall on what will be another new week without her here.  In 6 days it will be a complete 4 months without her here.  I cannot comprehend how summer is already here.  I really feel like I closed my eyes and it all happened in a blink, but yet it feels like the longest close to 4 months ever that I wish I could have actually slept through. 

Every day since February 3 has brought something new.  Supposedly the first year is the worst because of all the "firsts" you get to experience in a new way, but forget any of the special days, every day for the rest of my life is going to be something new I have to figure out without her here.  I dislike all that comes with that little fact.  Even in the crazy world of CDKL5 and Sonzee, we had a norm, we had a routine, and we had inconsistent consistency.  There was comfort and familiarity in the inconsistent consistency and we even relied on it, or at least I did.  I still feel so lost without her and the chaos as my guide, and I really really dislike all of this change.

The Mighty Contributor

Monday, May 25, 2020

16 weeks

Dear Sonzee,

Today is 16 weeks, and in 10 days it will be 4 months without you.  The past week has been really tough on me.  I feel like there has been so much that has changed in the last 4 months and it is finally catching up with me.  Maybe it is just I am finally accepting some of it, but then again I am really not doing so well with accepting where I am actually at with it all, so maybe it is just that it is all catching up with me and then some.

In an entirely different life we would have been boarding a plane for uncle's yesterday.  Tomorrow we would be going to Israel.  I am unsure if we would have been able to fully convince nurse Paige to tag along with us, but I would like to think that she would have ultimately said yes and joined us.  You and she would have been flying high style in business class to ensure you had the room you needed, and since she obviously would have been your wing-woman she would have been right next to you.  If El-Al would have allowed me to visit I certainly would have, but you would no doubt have been in amazing hands.

I was so nervous about you going on the plane for such a long time and we had already started working behind the scenes on your TPN/Lipid situation.  It no doubt would have been a hands to the sky situation and we would have just had to do the best we could.  We had planned on staying a month and then going back to uncle's to let Laeya and Tzvi get used to the time zone change before starting sleep away camp in PA 2 days later.  You, Noam, Meena, Aba, and I were going to go up to VV right after we dropped them off and get back into our summer groove.

Stepping back into our reality, all of our flights have been canceled, camps aren't sure they are happening and if they do we haven't decided if we are going to send your siblings.  We have no idea if we are spending the summer in Arizona or not, and we have made some really insane huge decisions this past week that I am still not fully able to talk about without crying.  In my mind it makes no sense because the big picture is really amazing, but right now I have accepted that it has become a lot for me to accept.  After all, forget asking me 5 years ago where I saw my life, let's just go to 5 months ago and it would have been an entirely different book of chapters.

On that same note, we celebrated your graduation from preschool last week.  FBC did an incredible job honoring you and helping us along with the entire staff get some closure with that period of your life.  Fox10 had a segment about your graduation and you were on the news in 2 different pictures.  I found myself so excited when I saw you but crying at the same time.  I made a slide show tribute for the staff and I have watched it 100 times myself.  I will always wonder if Madison would have agreed to send you back for Kindergarten.  We had just had your IEP the Monday before you spiking the fever, and by the end of the week Aba and I concluded we would most probably send you to FBC, but we would modify the schedule so you could also attend PHA for part of the day.  We would just keep that portion out of the IEP so you would receive all of your services and educational components at FBC, but still get to spend part of your time with your siblings and also be exposed to Judaics.  I would have really loved to see that all come together.

Yesterday we finally started refilling your swim spa back up with water.  It is as clean as can be and has two new filters.  Your siblings will be excited to get back into it, but we are going to make it a little bit cooler than what you would consider ideal so that it doesn't get insane with the high temperatures coming this way (think 107-110).  Hopefully, now that it has freshwater it won't be as challenging to keep balanced. 

Meena turned 7 on Saturday.  It has been so difficult for me to process her being 7, but I think that is because I forget you would be 5.  If you were 5 it makes complete sense she would be 7, but in my mind you are forever 4, so it makes her aging a bit difficult for me to acknowledge.  I even wrote in her birthday card happy 6th birthday, she didn't even believe me when I told her I didn't reuse the card from last year, but she was confused why I put 2020.  Overall her birthday was a success, and I even managed to wear my usual birthday leggings and shirt that I last wore for your advanced 5th birthday celebration and then again on your actual birthday.  I gave myself an inner nod for being able to wear it and not cry, acknowledged that I last wore it with you and was able to celebrate the night, so I was proud of myself.

Your absence still feels like such a significant pain and gap in my heart.  I find myself sitting alone staring off into space knowing the tears are on the verge of coming and trying to not fight the sadness more often now.  It is almost unavoidable, and I guess that's okay, and while it is something I wish wasn't the case, I am also ok with it because if I wasn't then that would mean you didn't even exist, and that would be worse.  I still definitely wish things were different on so many levels, but since they aren't, to quote one of my favorite songs "I'll go to bed, dream of you, that's what I am doing these days" (Or at least attempting to do).

I hope you are staying safe and know that we all miss and love you incredibly.

Love always,

The Mighty Contributor

Wednesday, May 20, 2020

To the newly diagnosed parent of a child with a rare disorder

To the newly diagnosed parent of a child with a rare disorder,

I have debated on what to say to you or your family member as you join our support page because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey.  You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of, you are simply wanting some hope.  That is fair, we all do when we start on this journey.  We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward.  I have to warn you about the hope you seek because that word itself will take on various meanings and forms throughout this journey, and I feel it is only fair to warn you, that sometimes, hope ends up being a crapshoot.

Despite what you are considering the potential worst-case to be, the reality is, as you begin this journey you are unable to truly grasp what that even is.  The worst-case will morph along this journey.  You will find yourself thinking at various points that this is it, this is the worst-case, but I can assure you, it can always get worse, and at times, it actually will.  What I can also tell you is that there will always be some sort of lift to help you out of the worst-case cavern you will find yourself in.  Sometimes you will be stuck there for far longer than you anticipated, sometimes you won't even realize you were there until it is over, and at some point, when the real worst-case hits, you will find that you simply have to learn to just sit inside it for some time.  It is just a part of life, and as much as we want to pretend these types of situations don't exist, the reality is, they do.

Despite the potential worst-cases, I implore you to not don't spend your time fixating on what they might end up being.  There are so many amazing cases that you didn't know could even exist that you will also encounter.  What your family has just embarked on is a journey with an ever changing situation and ever-changing emotions, and it is a roller coaster to say the least.  As you all learn to tackle the ups the downs all you can really do is ride the waves with an open mind and open heart, and understand that your life has forever been changed, but you will find a way to survive, even if at times it is simply by taking a deep breath.

The bereaved mom of a child who was newly diagnosed 5 years ago.

The Mighty Contributor

Tuesday, May 19, 2020


Every 30 days or so the groups I have set to "mute" start to show up in my newsfeed.  Facebook has learned me pretty well and for the last 5 years has made any CDKL5 page I follow the front and center item when I log in.  I have gotten really good at just scrolling by the posts or simply just clicking a "like", "love", or "care" just to show my support.  Over the last week or so I have actually found some energy to post a comment here and there, nothing too deep, but something the poster can hopefully find helpful.  It was in responding to one of those posts that I caught myself beginning to write about me not missing that specific part of CDKL5, but I erased the words and wrote something different.  It is one thing to think that, but to say that aloud seems almost wrong.

One of my closest friends is a mom who has a child diagnosed with CDKL5, and with her, I can be a little more blunt, just a little more me.  I found myself caught in a similar moment again in our conversation where I realized not only did I not miss those moments, but I had actually forgotten about the part of life with Sonzee.  All the bad of the disorder, all of the sleepless nights, the seizures, the gi pain, the pain in general, all of that thankfully is hidden in the recesses of my mind until I am reminded of it all.  The day to day thoughts of her are broader, fluctuating between missing her essence and her physical place in our family and the fact that her life was a struggle and challenge for her.  I do thank G-d for this provision, it definitely has a place.

Yet, this weekend spent in Flagstaff brought forth so many emotions and thoughts.  I found myself sitting outside looking around listening to my girls play together while Sonzee's baby brother was entertaining himself with a bubble lawnmower and bubble leaf blower when an image of a dressed up Sonzee playing around with them popped into my mind.  I was thinking about them all being together, and then snap! the image vanished as I realized I was daydreaming about a child we never even had.  That was never our Sonzee.  I was mourning the Sonzee we never even had paired with the Sonzee we learned to accept and then lost.  It is such a heaviness to bear the weight of multiple grievances.  There is such a huge pang of guilt in not missing certain aspects of her life, in missing a dream of a child she just never was, and in simply not even fully understanding who it is I am actually grieving. 

The Mighty Contributor

Monday, May 18, 2020

105 Days

Dear Sonzee,

Today will complete 105 days since you were here.  I simultaneously wonder how has it been so long and why does it still feel like it all happened yesterday?  The conversations with those around you are etched into my mind.  The decisions we had to make and the emotions we felt are so deep in my mind I could provide a detailed script.  Aba mentioned to me when he thinks about your final time in hospice (which for him has been about one to two times a week) he says it is like reliving a nightmare, it is fascinating to me how we both interpret everything vastly different.  For me, I think about it at least once or twice a day and I just replay it back in my mind as it played out, almost as an outsider, just numb,  I often wonder if that is because during that time I distinctly remember telling him and myself that I wasn't going to spend the time in any other state but the present. After all, I would have the rest of my life to feel everything else, which has turned out to be an accurate truth.

We went up to Flagstaff this weekend.  We visited you at Mt. Sinai on the way there and again on the way back.  I have an inkling you might have come with us as well, but there is a reason you aren't coming to me directly, you know I am still not quite ready to accept things, and so I appreciate you giving me time.  I don't know what to make of the fact that I need you to tell me you are okay but then when something happens that seems like you are doing just that I can't allow myself to believe it is actually coming from you.  I am sorry, I am still trying to balance believing in the possibilities and not feeling like I have completely gone crazy.  Laeya brought her Sonzee bear and she and Meena brought you with them all around the house to play.  They dressed you up during the day with their shirts and hair accessories and at night let you sleep in just the PJs you as the bear are wearing.

Tomorrow I get the initial verdict on what the monument company can put on your stone and what needs to be tweaked.  I am trying to go in open-minded about what they might end up suggesting and changing, but I just hope the main idea is still what we proposed.  I am sure however it turns out it is going to be perfect for you, mainly because I won't let it be any other way.

Restrictions have been lifted here in Phoenix from the coronavirus, but I am still unsure where I stand with it all.  We don't have you to officially protect anymore, but I am still set in my ways, and despite the sayings of "worst-case" being rare, you introduced us to that type of world, and honestly, I don't think I will ever fully be able to recover.  Rare isn't so rare, and I just cannot act like statistics all of a sudden mean anything other than a number that actually does happen.  I am happy for everyone else who can just move back on with their life, but I am just not there yet, for so many reasons.  Aba, as usual, has a completely different view of it all and he is begging for me to give him the "okay" to go to his hockey league and to allow Tzviki back to whatever "pick-up" ice times are being offered, but for now, we are still laying low.

The plants in your garden have survived a week. I know, it is crazy!  There was a questionable moment 3 days in, so I called the nursery and we held back on some water and since then everyone seems to be looking beautiful.  Laeya has named hers Shirley and Noam's is named Minion.  I think yours is just your name and I cannot remember if everyone else's has a name.  Everyone loves to come outside and water their specific plant, but I try to do it when they are otherwise occupied so it is just my time.  I drained the bulk of your spa last week and cleaned out the inside top to bottom.  I am going to finish draining the rest of the bottom with the handheld this week, replace the filters, and then get everything all backup and running hopefully for this weekend.  Auntie A made you a new sign, one that hopefully won't get destroyed in the rain this time, and it is already up on the side of your steps.  I was going to put it on the spa itself but decided with your crazy siblings being so crazy in the water, it would be best next to Mayzie's pinwheel out of the splash zone.

On Thursday morning you are supposed to be graduating from preschool.  I made you a rock to take to you after the virtual ceremony, but it is going to be tough.  I honestly didn't ever allow myself to envision you in a cap and gown, but at the start of this school year, I was getting very excited over how the day would unfold.  None of your siblings went to a school that celebrated preschool graduation in a big way and I was so excited for you to be the first.  I am really thankful the ceremony will not be in person, but I am also really thankful that you are going to be remembered and honored along with your graduating peers.

I really miss our cuddle time these days and look forward to a day they can occur again.  For now, just know I love you and think about you every second of the day.

Love always,

The Mighty Contributor

Thursday, May 14, 2020

Return to "normal"

As of Friday, Arizona's "stay at home" orders will be lifted, and just like that the state will be returning to normal.  Whatever that new normal is anyway.  I am on the ledge with my feelings, I have been from the very beginning.  On the one hand, the entire 4 years 11 months and 23 days of Sonzee's life we spent in a sort of quarantine.  We were extra diligent about who we allowed in the house and where we went.  Anyone close to us was aware that our restrictions followed Pheonix Children's Hospital, and that meant between December and May you weren't allowed in our house and we weren't going into yours.  We did our best to protect her, and if I push any potential "mom guilt" aside, we did a pretty damn good job of it.  Pre-covid19 times were for us, spent as if the virus was around because Sonzee was around, and now, now we are told to return to normal, yet I don't have the slightest idea what that even means because this was our normal.

Today, for the first time in 5 years we are packing up the car with four children for a weekend getaway that we booked yesterday.  A spontaneous trip to the cooler weather for us to go to be in a different location, to continue to do what is familiar to us yet completely unknown because there was no need for preparation.  There are no deliveries to work around, no fear of being 3-4 hours away from the nearest children's hospital, and no nurses to convince that they too need a weekend getaway.  There are no pressures to return to the normalcy of stores, sports, activities, or even socialization because we are going to hide away in the woods, and seclude ourselves even further.  The only decisions I anticipate to make this weekend are whether to sit outdoors or go for a walk.

I can't lie, the entire quarantine period has been a significant relief for us not having to figure out what our new normal is going to look like.  The fear of having to start to face that reality as soon as Friday is making me feel completely suffocated.  I don't know what is best for our family because we aren't the same family we once were.  The horribly sad reality is that we don't have to make all of the sacrifices we once used to make (without even thinking twice), yet that brings on its own form of heaviness.  I don't know what normal is, or what it is supposed to be.  I don't know if I am even ready for any new anything, much less a normal that doesn't revolve around a medically complex child.  What I do know, is that since I am not ready to deal with whatever normal might be, we are going to head over to Sonzee, tell her I will be back to see her Monday and let her know that she can come to join us in 20-degree cooler weather.  All the while I am going to be reminding myself that this weekend getaway is not going to give me any concrete answers or feelings of normalcy no matter how much I would love to fool myself into thinking that it could or would.

The Mighty Contributor

Monday, May 11, 2020

Final episode.

A few weeks ago I started to binge-watch Schitt's Creek.  It was a little slow going, but someone said to stick with it, so that is what I have done.  I have always been selective of the shows I get attached to after my teenage obsession with Dawson's Creek.  The ending of that show while absolutely perfect, left me depressed for ages because that meant the ritual of sitting on the couch, phone in hand waiting to discuss each episode with my friends after each episode had ended.  It has been selective binging ever since.  Since Netflix only has to season 5, that required Sam to get me the final season elsewhere, which he did, last night, and shortly after today I realized there were only three episodes left and the tears filled my eyes.

Let's be honest, it wasn't about the show on the verge of ending that had my emotions on overdrive.  It honestly has practically nothing to do with the show itself.  Sure it has been some great comical relief at night after the kids are in bed as well as it provided hours of occupied but non-think provoking time, but that isn't the reason either.  While I can give some credit to finishing off the night of an as good as could be expected first mother's day without Sonzee, the real credit goes to the fact that the reality is everything eventually comes to an end.  No matter how much you attempt to prepare, no matter how much you know the end is coming, there is nothing you can do to change its course.

Only three episodes are remaining, that means only an hour, maybe more if I have to press pause; but the end is near and in sight.  The tears came out of nowhere.  It sounds so trivial, and maybe even ridiculous to compare the ending of a 6 season show to the final 11 days Sonzee spent in hospice (it feels even more absurd that I can't stop crying over the comparison).  It just flipped a switch within me.  There is no other option but to watch these last three episodes.  I can push off when I watch them to tomorrow night, and maybe even watch only one a night for the next three days, but eventually the show will be over.  There is no way to change the fact that it is coming to an end.  I am sure I will over-analyze the final script and character directions for days to come.  After all, I am not the one who wrote the ending, I will just be the one who has to watch it all play out however the writer sees fit.

That is one reality of the harshness of grieving the loss of your medically complex child.  No matter that we knew her final episode was going to occur during our lifetime, no matter that we had some notification that the ending was becoming closer.  No matter how many warnings you are given, there is still no possible way to actually prepare for when it's the end.  There were only so many nights we could push off her series finally and then eventually we had to press play and watch her final credits roll.

The Mighty Contributor

Sunday, May 10, 2020

Mother's Day Without You

Dear Sonzee,

Today marks my first Mother's Day without you.  I won't pretend today is going to be easy, that would be impossible, no matter how many preparations I have tried to take to make it so.  I don't know why I even bothered to tell myself there might be a chance that I could pretend it was like the other Mother's days' I got to spend with you and your siblings.  While I was fortunate to spend five of them with you, really it should have been my entire lifetime, and instead, I had to settle for only five.  Being that today will start a new way of honoring this day I decided to take a look back at every Mother's Day since you became part of the reason for my day.

May 10, 2015, you were a day shy of turning 3 months old and we started the day with you going to swim.  Poppop was visiting for the weekend because of your sisters' dance recital, so he came and took you into the pool.  Savta was here too and there is a cute picture of you being held by her.  We then watched your older sisters' dance in their recital.  Meena had to be coerced onto the stage and then she stood there with her hands in her mouth like a deer in headlights.

May 8, 2016, you were at the beginning of what turned into a 28-day hospitalization.  It was the first time I celebrated Mother's Day in the hospital, we all made the most of it.  Restrictions were lifted at the time so your siblings came up to the room and we even got to walk you around in a wagon.  The room was decorated with all of the cards and gifts you and your siblings helped to make. 

May 14, 2017, we spent the day over at Auntie A's and went into the pool.  My main regret from all of this year is I cannot seem to locate a picture of you at all, and there is also not one of all of us on my google drive.  I will have to ask Auntie A and aba if they might have one.

May 13, 2018, we watched your brother play ice hockey and then met up with Auntie A and family at As You Wish Pottery. This was the year we started the tradition of going to make pottery.  Sadly that seemed to only last us two years because I cannot bring myself to do that again without you with us.

Our last Mother's Day together was last year, May 12, 2019.  It is probably going to remain my most favorite.  You gave me a coupon for "one-night seizure-free", and we took a couple of selfies together. You came to PHA to help me set up for the spring bookfair (you were always such a good sport about being dragged to do that twice a year).  We went to Auntie A's again for swimming and Uncle Mathias' world-famous (well not really) smoked brisket after going to do pottery.  You even tried the brisket because you were in such a great place with your feeds.   

I am so thankful that if we have to be separated for the rest of my life on a day that became a day for me with your assistance that we ended on such an amazing note.  Thank you for 5 incredible mother's days.  For this year, May 10, 2020, 5 years from the very first mother's day we shared together, we will be doing something entirely different, but completely inspired by you.  Aba picked up red and yellow plants for us all to plant today in your new garden.  I cannot make any promises on how this is going to turn out because like you know, plants are not my thing, but these are supposedly easy after some initial TLC and they are all hummingbird/butterfly specific plants.  I hope you'll come to take a look to give your approval.

Thank you for everything you taught me to help me on my motherhood journey.  While there are two titles I now have the honor of having that every mom who wears would rather not, I thank you for making me a special needs mom and a bereaved mom, because for some reason my purpose in life requires those badges and you were the one who brought them into my life.  They are hands down the most difficult titles I will ever have to live with, but without them would mean I didn't have you, and I would rather have had only 5 mother's days, and 4 years 11 months and 23 days with you than a life without you ever being part of it. So, thank you for giving me the gift of being a mom for the 4th time, specifically for being your mom, and for lending me some of your epic Sonzee bear strength, because today, I am going to really need it.

With love, always and forever,

The Mighty Contributor

Friday, May 8, 2020


Before I go into my room for the night I occasionally do a quick scroll through my Facebook newsfeed one last time.  I have found since Sonzee has passed I have a sort of love and hate relationship with it in general.  I love to be connected, I love to see what's new with my friends and their families, but even though I have muted a significant amount, there is still a lot that brings the lumps into my throat and tears into my eyes.  This week there happens to be the added weight of the anticipation of Mother's Day, and all the posts of crafts and projects already being made.  I know my kids are hard at work on theirs for me (they make me close my eyes when they go to show Sam), but this will be the first of many mother's days that will be spent without one of the reasons I will be celebrated. 

Every year for mother's day on the actual day we do a craft that involves all the kids.  They will typically do a small individual craft or card in advance, but my favorite thing that we started with my oldest is the group project that is completed on Mother's Day together.  We have done frames, shadowboxes, canvases, and a lot of pottery.  In the last few weeks, I have been trying to anticipate how I might feel on Sunday, but the reality is that I just won't know until it comes.  I initially felt like it wouldn't bother me, after all, I miss her every day as it is and we always go to see her on Sundays, so it will just be a typical Sunday for the Zaila's.  Then I started to wonder how we would incorporate her if we did an arts and crafts project when she isn't here to do her part.  She can't pick her paint colors or have her hand held to assist.  I have been wreaking my brain wondering how we alter the day to make some sort of accommodation that still honors the day with her siblings but has her included?

I have thought of so many ideas but nothing seems to make sense, and as the day creeps closer I am panicking for its arrival.  It doesn't seem to matter that I have other children to celebrate the day with, a significant part of my motherhood is due to such a crucial piece that is absent and won't be here. There is really no way to ignore the reality that my heart won't ever be whole again and there is now an actual day that ironically will most definitely make it feel even worse than usual.  There is no way to ignore or sugarcoat the fact that Sunday is going to be horribly, tragically, and painfully difficult, but yet amazingly beautiful all mixed together.  A day that will wrap up my dreams come true and inescapable nightmare and be delivered to me in a pretty bow for 24 hours to celebrate the reality of what has become mine and so sadly so many other's journeys of motherhood. 

The Mighty Contributor

Wednesday, May 6, 2020


Every night before going to sleep I have always walked through the house and turned off all the lights, made sure the alarm was set, and then lastly checked on all the kids.  I always start with the older girls' room because it is the first one in the hallway, then I go to our oldest son's, followed by baby brother, and until 103 days ago, Sonzee.  I do the same thing in each of the older kids' rooms, open the door and make sure they are tucked in, give them a kiss, turn on the fan if it feels hot, whisper "love you", and walk out.  For Sonzee I would walk over to her and feel under to check if there were any feeding, diaper, or tube leaks in general.  I would check her port and make sure the needle hadn't dislodged, double-check her TPN and Lipid pumps, make sure she had enough fluids in her feeding bag to ensure it would last until the morning, cover her in a blanket, make sure she had mermie, push her hair out of her face, give her a lengthy kiss and whisper I loved her and I understood if she had to leave us in the middle of the night, then I would close the sliding doors so there was a space for someone to walk in.

102 days ago was the last night I performed this nightly ritual for all 5 of my kids.  For nights 92-101, I slept right by her side and snuggled up next to her and gave her kisses, but there was no walking by her room to peek in and see her or go check on her like I always had.  It has been over 100 days since my body stopped the routine that had been set into place for so many years.  It has honestly been surprising (but yet refreshing) to me that my mind has done me the favor of erasing all of my engrained and what became involuntary routines.  My mind seemed to just know after she passed I didn't need to do certain things anymore so it didn't bombard me with unnecessary reminders or the feeling of panic as if things had been forgotten.  Yet I have noticed over the last few weeks that the protective mechanism has been starting to falter unexpectedly.

At least two times over the last week I have closed my youngest's room door walked into the hallway Sonzee used to share with us, walked by her bedroom doors that are slightly ajar to her room, and turned my head to look inside at her bed.  It has taken me an actual effort to have to remind myself of the reason she is not laying in her bed and the reason why Sam's laptop bag now hangs on her feeding tube pole.  The split-second it takes feels significantly longer.  The pain it causes is like a fresh papercut over an already open wound.  I have found myself walking into her room to readjust the blankets by the head of her bed and make sure the memory bear and her two mermies are situated in the best position.  I guess my brain couldn't protect me forever, but I also think for some reason some routines are just unable to be broken for long.  I take a quick glance around her room and then walk out, but I still find myself saying "love you Sonze, have a good night".

The Mighty Contributor

Sunday, May 3, 2020

A quarter of a year

Dear Sonzee,

Today marked one quarter of a year without you here.  In the long run, it will seem so significantly short, but today, it feels like it has been 30 years.  The ability for your world to fall apart or burst with amazingness occurred in such short increments of time I wonder so much where you would be right now had you been here, living with us over these last 90 days.  I have been wondering so much if you are changing wherever you are, but I will save that for another post on another day, today, I just want to let you know about what you've been missing here.

Laeya made your glow rock this month.  I hope you see it tonight when you look down on your grave.  Meena painted two seashells she has been saving for you for the last couple of months that we hadn't brought to you until today.  You have gained at least 15 rocks over the last month, all of them are perfect for you and have brought smiles and tears to my eyes.  Aba and I have almost decided on what we are hoping to have on your headstone.  As soon as we submit it all we will be told how much of it is a possibility.  I am so nervous that they will tell me something cannot be done and no matter how much I am trying to prepare for that possibility, I know I will have to grieve that as well.

We have been doing some family grief projects this month which appears to be helpful because everyone is becoming a bit more vocal about their feelings.  It's either that or was just going to happen at this point regardless.  Your sisters have been dressing Noam up in their pink shirts and slippers every night after their "shower/towel" and marching around the house.  It is really adorable, but your poor little brother.  We assume it will eventually sort itself out when he decides he has had enough of it, but Aba made a comment the other day about why they were doing it and Laeya replied: "we couldn't ever do it with Sonzee".  He has adopted some of your blankets as well, including your "bubbie blanket" and when I go check on him to give him one more kiss before I go to sleep it makes me stop an extra second because he looks so similar to you.

Corrinne spent a week in the hospital due to a line infection and ema was so worried for her.  It also evoked so many unexpected emotions within me.  Those are the hospitalizations I miss the least. Those are the moments of fear that I am so thankful are over.  That is the experience I don't miss, but at the same time, those are the emotions that represented our entire life with you.  They offer some weird sort of comfort that we have now forever lost.  There was always some sense of comfort being on the 8th floor of PCH, some nostalgic familiarity that means we were trying to fix something for you or save you.  I didn't know how to feel and honestly still don't.  I am realizing there is always going to be a part of me that just can't let that part of our life with you go, and I am thankful your friends' parents allow me to remain part of it knowing I still get it.

I am unsure if you have been by the house but there is a new memorial garden flag out front along with a hummingbird wind chime.  I am having a "Welcome" wooden sign custom made with a red hummingbird in place of the "O" to place across from the front door.  I am really excited, I just hope when I see you again you don't tell me how much you dislike hummingbirds.  The netting on the front gazebo porch swing was finally replaced from all of the holes.  I think about you every time I sit it in when we are out front, which has been practically every day, despite the heat.

It is getting hotter than imaginable here, but everyone at the cemetery has been amazing putting a chair under the tree near you so I can grab it to put on the sidewalk in front of you, and they bring me bottled water.  My huge peasant hat arrived last week so along with the SPF 30 on my face and body it is at least bearable on the hottest days for around 20 minutes.  I wish I could stay longer, and on overcast days, I certainly do, but it is just so intense.  I am going to ask them this week if it would be at all possible to plant a tree right by you, it can't hurt and the worst they say is "no" and then I am in the same position I am currently.

Today the Friendship Circle had their virtual fashion show and they paid tribute to you by showing your walk down the runway from last year with Emma.  You were so hyper that day, but you appeared to have such a blast with the "Fancy" song that aba chose for you.  It was such a perfect fit, you totally rocked it, and watching it again tonight made aba and I get emotional.  On that same note, Miss. Jaime called last week to ask about your involvement in graduation.  Initially, aba and I weren't sure what to do because you didn't actually get to finish your last semester to officially "graduate", but you are so much of the FBC family it only seems appropriate and fair to you and the FBC staff to honor you in some way.  These types of milestones and events are just really challenging, but thankfully in a sense, we are on corona restrictions because the blow is lessened not having to attend these events in person.

Plans for summer are still up in the air, except we did cancel going to Israel.  To be honest, I was really having a difficult time with that trip all year, including before you passed, so it is a huge relief to me that it is off the table for this year.  NY and PA camps have yet to make their official statements, so we are hanging tight.  I am a mixed bag of emotions over it, where I partially want to stay in lockdown forever, but the selfish me so needs to see my NY framily, especially this summer, so I am still holding out hope on June 1 that some sort of modified option will be presented that will make TH 49 a reality. I don't care if I sit on the porch in upstate and talk through screen doors, I just want the VV atmosphere.

Anyway, I think I rambled enough for today.  Just know wherever you are I wish so much that you were still here, but I know in my heart you are at a level of peace I just cannot compete with.  I miss you beyond words.  As always be sure to stay safe.

Love always,

The Mighty Contributor