Rare Disease Day 2021....CDKL5 is....

For the last couple of weeks or so I have watched my newsfeed transform into this advertisement for rare disease day.  I suppose that is my fault for having the majority of my friends from the world of rare.  Maybe that in itself isn't the fault, maybe the fault is that I haven't snoozed them? It has been a day on the calendar I have always felt conflicted over since 2016, never sure whether it was a day to celebrate or berate.  The purpose I suppose is to have a day to give recognition to all of the rare that is a part of the world. Another day to raise awareness over various disorders that might not have the recognition that is needed to find cures or monetary assistance to conduct research.  For many families, it is a way to bring to light that despite the struggles that their children or family member face daily they are strong, they have prevailed, and yada yada yada.  However, for me, a year and 25 days after I had to bury my rare, I feel like it is just another day to slap me in the face.

This year specifically the CDKL5 community in America decided to post pictures of their kiddos with signs that say "CDKL5 is..."  The first word that came to my mind to complete that phrase, "CDKL5 is death".  Probably not the cute # that the community was or is going for, but the truth and reality for SO many nonetheless.  I didn't bother to submit my picture of Sonzee's gravesite or of a picture of her from when she was actually alive holding a piece of paper that was photoshopped.  I am fairly certain it wouldn't have been shared, you know since it could be too depressing, or possibly make others afraid.  You know, as if pretending makes the harsh reality somehow not exist?  Or as if not talking about the reality of rare and the potential of life after rare makes it so other families don't join this dark side of rare!

I understand better than anyone how challenging it can be to have the fear of death hanging over your shoulder when it's your child who is still living and breathing with the same rare that took away Sonzee.  I understand that maybe posting #brave or # some other positive word is just a way to try to focus on the bright side, to try and remove the haunting bad Joo Joo that hangs over your head every day.  Or maybe, parents really do think that what happened to Sonzee is the rare of CDKL5.  Maybe they aren't ready to acknowledge that CDKL5 can actually be the sole cause of death.  But, today on February 28, 2021, when everyone is doing their best to get the word out about rare, just remember, to many, CDKL5 and other rare diseases are #death.     

Happy 5th Birthday Corrinne

Dear Corrinne, 

Today is such a special day, it is your 5th birthday.  So many of Sonzee's friends have turned 5 since she has passed, but for some reason, today, your birthday is the one hitting me the hardest.  Maybe it is because you were the only friend we had come share in her mock 5th birthday party?  Maybe it is because of the parallels in yours and Sonzee's journey?  Maybe it is because I haven't let myself fully grieve over Sonzee never officially turning 5 and I was so afraid for your family that they would end up like us and today would be happening in a completely different manner?  Maybe it is because I personally feel so invested in you turning 5 that I am a mixture of relieved, ecstatic, and beyond grateful that you have made it to this milestone?  Maybe it is because I know that you being at Bear Pines somehow means Sonzee is celebrating with you and it feels like life is coming full circle?

You are such a special girl to so many.  We have been so blessed to have you and your family in our lives for 4ish years.  Your mother is one of the few people in this world that I can and have shared my darkest fears and feelings with and who has been there to help me feel almost normal the last 7.5 months.  She is for sure your fiercest advocate and a primary reason you are able to celebrate in all of your glory the amazingness that is today.  Sonzee was so blessed to have met you in FBC's Friday group, it was because of your story that we finally took a tour at Ryan House.  You and Sonzee shared a knack of making your (same) GI doctor experience firsts with your insane dysmotility...but you, my friend, continue to just travel along with a divalicious smile, painted nails, beautiful sassiness, and a requirement to travel with a mini fridge.

I am just so thankful that you honored us by accepting the invitation to Bear Pines for your special day. I hope it is your best birthday ever, I don't doubt for a second that you will be and have been spoiled beyond comprehension, and rightly so.  I hope you know how much your life has mattered to ours.  On your 5th birthday, we wish you a year of few hospitalizations, no new diagnoses, calmness, health, happiness, and amazing memories to be made with your friends and family.

   

Love, 

Sonzee's Family

23 weeks

Dear Sonzee Bear,

My groundhog week begins again.  It will be 23 weeks this afternoon at 1:08pm AZ time.  This week has been filled with much of the same with a slight twist of additional tears.  The further away our last time together becomes, the harder it is for me to try and understand everything related to your life and your death.  In just 5 days it will be 6 months from the day aba called hospice and had you admitted.  I have spent much of these last 6 months analyzing the 6 months prior to that day, which brings us to a year ago now in New York.  Last summer is when my gut knew you were starting to slip away from us.  It was such a battle for me to try and convince everyone else to really look and listen to you.  Ultimately, the only two differences would have been you knowing the hospice team a few months longer, and maybe fewer fights between aba and I?

Speaking of aba, he woke me up one night this past week to tell me he saw you.  You held his hand and walked with him to where your friends were.  You then left him to go and play with them.  He said it felt so real he couldn't even understand it.  He couldn't stop saying how happy you were.  My heart was filled with such joy.  I knew the minute he said you let go of his hand and walked away to your friends that I am still not ready for you to visit me.  I love that you are aware of that but still chose to let us know you are truly ok and so radiantly happy.  It's all we have ever wanted for you.

This weekend we had record-setting temperatures.  It is absolutely ridiculous here.  We didn't need this type of reminder to know why we choose to flee this city every summer.  It is horrible.  I literally drive to check on your rocks and hop back in the car because it is way too hot to stay longer than 5 minutes in the sun.  Sometimes you throw us a heated breeze, Laeya and I always make a comment when it happens, it makes us smile, and we always look up at the sky and thank you. 

Your siblings and aba have been splashing like maniacs in your spa.   Aba says it is his happy place. They are treating it like a pool, temp, toys, jumping, and all.  It is really insane to be out there because I get soaked sitting nearby.  I have been able to walk up the steps and be out there while they are inside for a bit without crying, so that's a plus.  I have taken to watching way too many "tasty" food videos and spend their pool time making various dinners.  I have also perfected my at-home coffee beverages and smoothies.  Nurse Paige wouldn't even know who I am anymore because I have only been to a Starbucks twice since March and it was only when we drove out of town.  Winning!

As always I will finish off by telling you how much you are missed and loved.  Laeya says she is having a bit of an issue figuring out the dynamic of siblings without you here, I am in that boat for every dynamic.  I will continue to hope and wish you are having a great time.  No matter how incredibly hard it is for me to be here without you, I am pretty content with aba's account that my wishes and hopes are coming true so may they only continue, and may you only find further happiness for yourself. 

Love always,
Ema

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,
Ema

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.

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

Grieving

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. 

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.

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,
Ema

Journey

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. 

Routines.

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 hallway

The hallway is finally empty.  It wasn't exactly planned in advance for it to happen today, but this morning I received a message saying the items could be picked up today.  It was supposed to be for TPN specific items but then I asked if I could just send everything off to which the texter happily obliged.  She "gets it", her niece passed away last year and she wanted to be as helpful as possible in easing this process.  

Once all the items were loaded into her car the conversation of Sonzee's wheelchair came up and in the end, she gladly took it away as well.  I much prefer these items going off to help others who are in need, it is the closest we could get to organ donation since CDKL5 essentially ruled that possibility out.  It is a shame on many levels because that girl had one hell of a heart, but then again, without CDKL5 the consideration would most probably not even be on the table, and this blog post, as well as her entire story, wouldn't even be written. 

In the end, the hallway is now empty.  The seat in the car that once held her car seat is empty.  Her ppod, stroller, and rifton sitting in our master bedroom are empty.  The spaces in this house that were once filled with so much equipment I would go insane trying to keep it organized are now representative of an even bigger void that we will have to live with.  In the end, our hallway is now empty; almost poetically to match our hearts.

"No one said this would ever be easy, my love" -Olivia Holt

Without

Rock painted by big sister Meena in honor of it being 2 months

April 3.  The date that has been marked in my mind for months.  It is officially 4 months since Sam lost his dad and 2 months since we lost Sonzee.  They say everything happens in three's, so to say we have been nervous about the approach of today's date is probably an inadequate understatement.  Despite the trepidation of waiting to close out today without losing someone we care about, in general, today is weighing heavily on my heart.  The air is seriously so hard to breathe when I actually focus on the fact that it has been two complete months since she was last in my arms.  It becomes even more difficult when I consider that it isn't supposed to be this way.  None of my dreams ever included becoming a special needs mom and then having to bury the child who earned me that title.

Many still feel awkward asking me how I am doing, some ask as if nothing has even happened.  There have been moments when I really have been doing okay.  There have been moments when it has taken everything within me to embrace my inner Golden Globe performance in order to function.  I wish I knew in advance which conversations would be no big deal and which would result in tears either flowing or attempted to be hidden.  It would be nice if I had a magic 8 ball to give me some morning guidance as to how the day would unfold.  More often then not, I am still just finding my footing in this quicksand.

It has become increasingly more difficult to hide from it all.  All of the kids are home but her presence is gone.  I spend a good portion of my days keeping my mind preoccupied with projects, helping the kids with their classwork, and working myself.  If I stick to the mental hamster wheel I won't get pulled into the abyss of grief; but randomly throughout the day, the glimpses of grief are unavoidable.  It's sneaky, creative, and always when I am least expecting.  Moments that follow a seemingly innocent memory or thought of calmness are the worst.  I sometimes find myself wondering if there is a way to go back to a time where she was physically here, but then I quickly remind myself that it wouldn't be best for her.  It is a sound argument that logic cannot deny, so it buys me time until the next sneaky approach.

Many moments are spent reminding myself she was only 4 but she did in fact live.  Many times are spent wondering if it would have been better for her to have lived another 5, 10, or 15+ years only for us to end up in this same position.  I sometimes even wonder what if she never had a CDKL5 mutation, would we have lost her at 4 regardless?  Does it even make sense to hypothetically wonder if one way is worse?  I don't think there can be a worse when it comes to being a grieving parent, it is not a role anyone volunteers for, it's right up there with a Hunger Games assignment.  It's just a random fluke of a horrible lottery where you pray the odds won't ever be in your favor so you don't have to celebrate the milestone of counting the days of your life you are now spending without your child.

Owls

Dear Sonzee,

I am sitting here with you amongst this time of social distancing, while I don’t think you could be any further from me, this is the closest I can get. I keep seeing all of your friends' parents changing their Facebook profile badge to the one that says “Your only is my everything” and ironically it pains me that I cannot do that.  I wonder what I would have said to myself 5 years ago today when you had your first EEG had I known where I would find myself today.

A week and a half ago I saw an owl in the tree across the way from you. I took so many videos and pictures because I have never seen an owl in real life in a tree so close, I also was not sure aba would believe me if I just told him about it. There happened to be a funeral going on at the time and I wondered if this person had any relationship to owls.  Minus an owl dress and a pair of pajamas we never really coined you an owl girl.  I went home and while working on your room, I came across a picture that Laeya made for you.  I am unsure when she drew it, but there is a bird saying feel better to two owls sitting on a branch in a tree. I hung it on the wall yesterday. Today while I have been sitting here with you, Mr. owl has been hooting away.

I keep wishing you were here but at the same time I am so thankful we don’t have to worry about you being taken away from us because of a virus. That was always my worst fear. No matter what we did to try and protect you it was never enough, you always managed to get everyone’s “allergies” anyway. I couldn’t help myself and I signed into the PCH portal last night to look up your previous positive respiratory viruses. You were the queen of adenovirus/rhinovirus and you even had the HCoV-OC43 coronavirus. My heart sank to see all of your future appointments removed but I am so thankful someone took care of that for me and that no one made me have to call every office to cancel them; doing that for your feeding pump was horrible enough.

We started a grief support group last week. Sadly it has been put on hold due to social distancing, but your siblings after essentially having to force them to go are begging to go back.  It makes it worse they aren't having it right now, but I am so happy they enjoyed it.  Of course, they were each given another beanie baby and a blanket (because we don't have enough of those) but that definitely made them smile. I was hesitant to take another blanket myself, but sometimes it gets windy and chilly when I sit with you and I have already gotten to use it.  Meena and Laeya have been more openly vocal about them missing you since that first meeting. They say how much they just miss having you around. Noam has started to make it a routine now to request the book of you and him at nap time and bedtime. Tzviki is still keeping to himself, but he did share his favorite time with you was that last week when you two snuggled and told stories, I am so glad I recorded the entire event.

I am not sure if you have viewed your space from above, but after each storm, the dirt and rocks sink in.  I have been there every time and each time it manages to get worse.  The guys at the cemetery have been amazing fixing it within 24 hours, but sometimes I am quicker to visit than they are to get it back up to snuff.  Apparently tomorrow it is supposed to rain really hard all day, so Mr. Ira came out to warn me that he will have it fixed as soon as the weather permits, thankfully everyone continues to make sure they take care of you.  

I was warned that no matter what happened when you were dying that I would find myself reconsidering every decision.  I was cocky at the time so confident in our choices that I couldn't imagine that would ever be the case.  It is amazing what 6 weeks and your absence can do to my mind.  I still know we had no control over what happened, but at times my mind wanders to that land of what if.  Thankfully I have people who entertain, accept, and support my wandering but also steer me back on the path making sure I really know that we did the best for you.  It is just hard, life without you little bear is just hard.  Every little thing depending on the day is just hard, so I am trying to just focus on a day at a time.

I hope you have had an amazing 6 weeks and have made all sorts of new friends.  Hopefully, you don't have to worry about social distancing wherever you are and your days are filled with tons of swimming, eating, and whatever else it is your heart desires.  Know that we are all still surviving without you despite our broken hearts, and we all look forward to seeing you and hugging you again.

With love always,

Ema

"Strength"

I dreamed of becoming a mom for as long as I can remember, and when it first happened in 2010 it was the start of something that surpassed any dreams I ever had.  I have theoretically become a mom 5 different times.  Each of my children is as individual as can be making my mommying experience equally as distinct.  From being a competitive dance mom to a hockey mom to a free spirited child mom to a special needs mom, and a slew of other descriptive titled moms in between.  I am and will always be proud of all of the different mom titles I wear, however, the one no one ever thinks they will ever earn, the one no one ever wants and yet the one that I am soon to be awarded is that of the grief-stricken bereaved mom. 

It was suggested to us that we begin to make plans at this point so that any decisions that can be, will be made in advance.  For everyone who has said "you are so strong", or "you are incredible", I hand you back those words, medals, and sashes.  Yesterday, I was not equipped with the appropriate amount of strength to get me to go "cemetery hopping".  Instead, it was my amazing sister who graciously volunteered without even being asked and Sam.  I gave my "requests" and they did their best to make sure they will come to fruition.  I say requests like these things have been sitting in my mind for a lengthy amount of time, but the truth is I didn't even know I even had them more than 24 hours ago. 

Watching my child suffer over the last 4 years 11 months and 16 days of her life has drained so much of me mentally and physically, I think my strength quota has been reached.  The last 4 years 11 months and 16 days apparently isn't going to earn me much reprieve in how the remainder of this story is going to be written.  There is not going to be any first day of kindergarten picture or any sassy turning away when she wants nothing to do with us.  There is not going to be any more "hooray for Sonzee's" or cheering over some almost met inchstone.  While I am extremely grateful we are getting to segway into this new chapter on our little bear's own terms when she is ready, everything our family has endured with her isn't earning us an alternative ending, so whatever strength might remain after all of this is said and done, I am going to need to write my own.

Just wish....

Sam's first car when we met was a 2001 Honda Accord. It was 2 door, greyish-silver, and had an Israeli flag bumper sticker on the back right side.   He was so in love with this car, although I had a different opinion.  The car had so many different issues, the timing belts needed to be changed, the spark plug wasn't doing its thing and then the radiator started to overheat.  He would try these little cheap fixes and I would tell him he was wasting his time because he was eventually going to need to get rid of it.  After we got engaged and we agreed to move to Arizona, he mentioned he was going to drive that little car 1300+ miles across the country.  I laughed so hard while I told him there was no way that his favorite car was going to make the journey.  He disagreed.

By Spring of 2008, he finally decided he should take the car to the nearest dealership, which was about 40 minutes away in Valdosta Georgia.  So together we got into the car and started to drive.  About halfway into the trip the car began to smoke.  We pulled over and the radiator (again) needed to cool off.  He was so used to "fixing" the radiator, so it came as second nature.  While I sat on the side of the road he got a ride from a nice older lady to the nearest gas station to get some water.  When he returned, he poured the water on the radiator, it cooled off and we continued on our way.  It was finally time, Sam knew it was time, he still would have rather held onto the car, but he did admit it was time, and so he let it go.

I couldn't sleep last night, and at 3am I laid starring at the ceiling when this story popped into the forefront of my mind.  So many similarities from this experience, however, instead of a car, it is our little Sonzee bear.  Her entire life we have spent trying to put putty in all the water holes that have presented themselves, albeit never fully successfully.  Eventually, you realize and accept there really is nothing that you can do to try and fix the problems.  No amount of interventions can compete with the fact that her body is telling us it is tired.  It is not in the, I need to lay down and take a nap type of presentation of tired.   But in the "I cannot regulate any of my bodily systems appropriately for things to function" manner.  It is beyond devastating and really impossible to have to accept that there really is nothing left for us to do, we really have done everything for her.  So, what is left for us to do, is to respect what her body is telling us, respect what she is communicating to us and respect this process as horribly painful as that really is.  So to summarize the only way I know how, I give honor to one of the famous quotes from Steel Magnolias, "We should handle it the best way we know how and get on with it. That's what my mind says, I just wish somebody would explain it to my heart."

The Same

We are a month and 5 days away from Sonzee turning 5.  I really am trying my best to focus on the sheer fact that she will be turning five, that she is here to celebrate such a milestone; but the human side of me says that still is not enough.  It is honestly just not enough to be celebrating a milestone that I am not even sure she realizes is occurring.  The doubt in that fact alone is enough to bring tears into my eyes.  Watching her seize and sleep her days away otherwise is enough to release the tears straight down my face.  It just isn't fair.

We are a month and 5 days away from our youngest being officially more than 2.5 years younger chronologically from Sonzee, but developmentally 2 years more advanced than she will ever be, with an ever-growing gap as each day passes.  It hurts. It hurts in such an incredibly unexpected way.  Watching him as he gains every little skill.  As he speaks more words each day.   With each and every smile he flashes my way.  With every gentle pat and snuggle he gives her and concern he extends toward his bigger sister.  It just isn't how the roles are supposed to be.

I sometimes wonder if I will ever really wrap my head around the fact that this is the life she is destined to live.  I wonder if I will ever truly be able to accept that this is how it is supposed to be.  I wonder if I will one day truly believe she really is who she is and it was a purposeful genetic mistake, or rather not even really a mistake.  I wonder if I will ever be able to give up on what I still honestly secretly wish she could achieve, and the dreams of normalcy I wish her to have.  I wonder if there is ever going to be a way that I can look at her siblings and not have a cloud dampen it because Sonzee isn't or won't be able to do xyz.  The minutes and hours are ticking by.  The days are going by faster than I can keep up.  The years are speeding by at a rate I feel I am not even able to process, but Sonzee, she always stays the same. 

Karaoke

Sonzee's older siblings always love to put on shows, so when it came time for me to complete their wish lists for Chanuka Angels gifts it was a no brainer to include a karaoke machine and karaoke microphone.  The box of the karaoke machine came unwrapped and our middle daughter knew it was for her because it was in her pile, so she has been eagerly anticipating opening the actual box.  Our son who really didn't know everything that I requested for him was eyeing a specifically shaped box in anticipation of it being a microphone, thankfully it worked out for the best when he opened his gifts.  Sonzee did get a really awesome spinning light wand from her aunt that would be totally awesome to use during their shows, but as usual, despite our best efforts, she was unphased and indifferent to her gifts.

I usually keep Sonzee's gifts limited to things she actually needs, such as clothing, backpacks, pacifiers, or pacifier clips.  She doesn't show any reaction towards anything she is given, and honestly, she doesn't seem to even be aware that she on the receiving end of a gift.  It is probably more a protective mechanism for myself that I limit the types of gifts she receives because there is no excitement, no reaction, really, there is no awareness at all.  From a parent's perspective, it is really sad because the best part of having your child open a gift is their initial reaction.  Due to the safeguards I have in place and the fact that we are blessed with four other kiddos, I didn't find it difficult to handle the gift opening portion last night on the first night of Chanukah but then we started family karaoke and I have yet to find the solution to the unplanned emotional situations that inevitably occur.

The karaoke machine was hooked up to the TV, the microphones were connected, the lyrics were on the screen, red, blue, green, and white disco lights were spinning in a darkened room, and the music was blasting.  We might as well have been called club Zaila, it was the best.  I started to record the kids singing at the top of their lungs and then panned across the room until I got to Sonzee who was just laying in her ppod not participating.  A mixture of exhausted from her recent seizure, the multiple other ones she had throughout the day, and just CDKL5 in general.  She didn't care for the disco lights going, she wouldn't even look at the awesome spinning wand her aunt gave her.  She was just blah.  I felt the tears enter into my eyes, but I immediately pushed them away.  I didn't feel like letting CDKL5 steal another moment.  It was much more fun to focus on my older three dancing while they sang at the top of their lungs, so I flipped my emotional switch to off and pushed the pain away.  Always on the tight rope of acceptance and hope of something.  While I fully accept who she is as a person, I still hold onto some hope that maybe tonight she will want to look at her amazing spinning light-up princess wand when we turn back into club Zaila.   

The plan

I have always been a planner.  I surprise myself sometimes with my ability to continue planning, even though so many times over the last close to 5 years my planning has not yielded the same outcomes as I had anticipated.  I have learned planning is just one component and not even necessarily the most important part, it is the execution of those plans that almost weigh more than all of the preparation, and sometimes even though the plan is in plain sight and you can clearly see the words written out in front of you, your specific desire for the situation to unfold in the manner you thought, isn't always in the cards.

April 16, 2015, was the day that reality shifted, all of our parenting plans as we knew them, changed.  It was the day that I learned you could breathe but your lungs might not fill up with air.  It was the day that I learned that rare can happen to anyone and when it does, it doesn't feel very rare at all.  It was a day that time simultaneously stood still and flew by all at once.  It was the day despite being married 6.5 years already that I would first see Sam cry not because of a birth of one of our children, but because his world was crumbling around him.  There was nothing we could do but once we collected ourselves we made a new plan.

Had you asked me 4.5 years ago, I would have said the first death amongst my non-special needs framily would have been Sonzee.  The plan was Sam and I sitting shiva first because she had passed.  It was supposed to be our friends navigating how shiva worked and things to do.  I never entertained that one of my closest friends would have had to suffer the loss of her mother first, and I certainly never imagined any of Sonzee's grandparents passing first.  Logically I know that is how it is supposed to be, but that wasn't part of the current plan.  It's true you just never know what can happen, and for the last week and a half, I have been wondering why Sam's dad passed.  His soul's mission had clearly been accomplished and his purpose on earth fulfilled, yet none of us here will be privy to the real answer.  What peace I have gathered in my mind over it all is that someone needs to be waiting for Sonzee when it's her turn, and I know when her turn comes, he will be waiting with a cigarette in hand, open arms, on a bent knee and a huge smile on his face...at least that is the plan.

13 weeks

In 10 weeks our oldest daughter turns 10. That means in 13 weeks Sonzee should be turning 5. It’s a birthday I have never prepared for, a day I wasn’t sure would ever come, a year I told myself we might not get to experience with her. As it creeps close I am torn between potential excitement at all that turning 5 represents and fear that letting my mental protective guard down will only prove to be catastrophic should my worst fears become our reality.

When Sonzee was diagnosed with CDKL5 when she was only 8 weeks old I immediately joined the CDKL5 parent support page. The first 10 months was filled with so many infant, toddler, and less than double-digit aged deaths that it shook me to my core. Whenever I have been asked about Sonzee’s prognosis and if there was an “age limit” I would answer, “it is unknown, there seem to be benchmarks that you can semi sigh of relief if the kiddos pass them, but I honestly have told myself 5”.

Within a month of celebrating Sonzee’s 4th birthday I had a dream, that I had finally allowed myself to plan for her 5th birthday, I went on Etsy and purchased one of those birthday shirts that had the number 5 and of course had it personalized. Then she passed. I never have been able to tell if that dream was a premonition or just my anxiety but we have watched her decline tremendously since summer and I honestly don’t know where her little body stands.  I don't know where my mind stands.

As each day passes and February 11 comes closer I am internally torn. I want to plan for her birthday celebration, I want to look forward to her preschool/kindergarten transition, I want to know with certainty that 2020 will bring me a 5-year-old, but like with so many things over the last 4.5 years I’m cautiously optimistic, but preparing for the worst. My sister semi joked that I should just avoid buying her a shirt on Etsy, if only that could dictate her fate and if only I could allow myself to plan.  But instead, I hesitantly look towards the next few months with hope yet filled with this indescribable weight of something lurking in the distance that is completely out of my control.

The stars

One of my mom friends, Bridget, who also has a child on a medically complex journey posted a song on Facebook with the words, "Might seem strange, but sometimes a romantic song can actually change its meaning when you have a child", she went on to say "If you're a mommy of a non-verbal child; this one's for you."  For the past couple of weeks, our house has been slightly obsessed with listening to "The Greatest Showman" songs on Spotify, on the house Alexa, on YouTube, literally, anywhere we can get the songs playing.  I love all the songs on the soundtrack, however, "Rewrite the Stars" is the one that if you pull up next to me driving, you can bet money I will be belting out the words as loud and off-key as possible with tears in my eyes or rolling down my face.  

It seems to be the perfect duet with Sonzee these days.  Almost every single phrase I can relate to her life and our situation.  From the heartbreaking reality that "Fate is pulling you miles away And out of reach from me", But you're here in my heart".  To the literal facts that I am sure she feels, "You think it's easy You think I don't want to run to you But there are mountains And there are doors that we can't walk through".  Which leads me to the basic question, "How do we rewrite the stars?"  

Oh gosh, if only we could, if only it actually was possible.  No matter how many times I listen to the song the words crawl inside my heart and just sit there.  These last few weeks have been ridiculously brutal on Sonzee, on Sam and me, on our marriage and general family life.  The situation we are placed in is not normal and shouldn't even be considered normal in our special needs, medically complex, "atypical" world.  Decisions have been made, choices have been made, but there is no winner.  There is no winning in this lottery.

"No one can rewrite the stars", but "Say that the world can be ours".  "Say that it is possible, because "It feels impossible...We're bound to break and my hands are tied".