Avoidance

During our last grief group, the question was asked, "how are you managing your grief?".  These questions don't always yield a cookie cutter answer, I suppose that is the exact point of why they are asked.  Some people volunteered to share their responses, I had been thinking about my response wondering how exactly to frame it.   I wondered if my answer was going to be right. Knowing that whatever my answer would be, is the only right, but yet not convinced.  Then it became my turn.  I mentioned how I blog, I had forgotten or rather at the time didn't realize that me posting my daily throwbacks was also something I had been doing as a method, and then I said what I consider the biggest way I have been managing my grief...by avoidance.

I can think back to all of the amazing grief support books I engulfed myself in immediately after she passed.  I can see the words written stating how letting yourself fall into the grief eventually gets easier.  How it is better to allow yourself to allow the grief to happen when it presents itself because if not it can eventually be more challenging to push it down, and then you are hit by a tsunami rather than 6 foot waves.  I remember thinking about how I will make sure to feel it always and to deal with it as it comes.  It is comparable to all of those things you tell yourself you either will or won't do when you first become a parent.  If I had said openly to anyone on this journey that my intention was to never let grief suck me in I am sure they would smile and nod and think to themselves, "ya okay".  I can now remember every time I have reminded myself over the last 7.5 months of these facts when I force myself to swallow the grief up and close my eyes in my best attempts to squash it.  I can see the words written on the page every time I tell myself nope, not now, don't cry, later, now isn't the time.  Avoiding has become my "management".  It is honestly so much easier to act like everything is fine than acknowledging the reality.  Trust me when I say, the pain is far too horrible to let it take over at any point.  No, I don't want to deal with it.  Yes, it is easier to lie and pretend everything is fine.  

It becomes this endless grief version of "if I give myself a cookie".  If I admit that she is gone, then I have to admit that it hurts.  If I admit it hurts that means I have to allow myself to cry.  If I allow myself to cry that means I have to admit that this pain and the reality is real.  If I admit that this pain and the reality of it all is real, then I had to admit that she isn't coming back and that this is going to be forever.  If I admit this is forever, it is too much so she can't be gone, there is nothing to mourn because she isn't not here and therefore I don't have to cry and I don't have to feel this horrible pain.  To admit to myself at only 7.5 months into this journey that it is going to be like this forever is way too much to accept.  So for now, I acknowledge we are no longer a physical party of 7, and I acknowledge that I am not an active member of the special needs party, but as far as really managing my grief...avoidance of the realness of the situation feels much much easier.

What's there to say

I have been part of the CDKL5 support group for over 5 years.  For many years I was extremely active, sharing our experience with Sonzee and Sonzee specific related information with no problems.  The older she grew and the more involved she became I found participating to be extremely emotionally draining.  I always hesitated because those who were new members would eventually find their footing and until they did, they didn't necessarily want to see a 3 or 4-year-old potential version of their child in Sonzee.  Maybe that was my personal take because children presenting like Sonzee don't necessarily reek the hope the newly diagnosed parents are seeking.  And now...220 days since she passed away, I represent everything they fear, so what's there to say?

This week a new mom introduced herself and I am assuming my 30-day snooze needs to be reset because I saw it.  This week for the first time in months I scrolled down the comments and read everyone introducing themselves and their child.  Then for the first time in I don't know how long I clicked into the comment space, but then I sat there, rereading the introduction of the mother, reading all of the comments, tears filling my eyes and left wondering, what's there to say? 

What is there to say besides, I once had a daughter who went through all of the same exact challenges as your child and despite the hope you have, the reality is, at some point, they might finally be at peace, but that means you are part of the other CDKL5 group of bereaved parents?  There is no way to share her journey without stating the obvious fact, she isn't here any longer. Who wants to hear that?  Because I don't even want to say it.  

Really, what's there to say?

Control

The last few days I have felt similar to a prepubescent hormonal girl who feels like her world is falling apart and that no one understands her.  While she has no idea why she is feeling the way she is, I know for me, the culprit is grief, which is now the replacement for the previous 5 letter string of characters that wrecked so much havoc on our lives.  Unfortunately, and similar to CDKL5, knowing that my grief is "the why" doesn't at all help with gaining any sort of reprieve from it or any control over it. It is so hard.

I have read enough books about grief and talked to enough fellow grievers to know the best course of action is to just sit with the grief, but honestly, it isn't as easy as it sounds.  Sitting with grief means there has to be a relinquishing of what little control I have fooled myself into thinking I have left. It means allowing myself to feel these tumultuous waves of pain, of anger, of sadness, of I don't even know what.  It means I have to allow myself to realize all of my feelings are normal, even the ones that I am deeming irrational because they all do have a purpose and because they are my feelings, they are all valid. 

I feel like I have been reluctantly dragged to a get-together and now I have to make the best of it by striking up a conversation with someone in the room.  It is awkward, the desire to be there is null and there is the now added component of pretending to be interested in small talk.  The difference between grief and attending the get together is that more often than not, you can look back on attending the event and realize it wasn't so bad after all.  When it comes to grief, there is no looking back on it, there is no escape from it, and there is no excitement over allowing it into your life.  The only positive that comes from sitting with grief is that each time you sit with it, you have managed to successfully survive another tsunami, but that is hardly a consolation when you know the cycle is neverending. 

Confusion

Sam and I have been attending a virtual grief support group for bereaved parents on Monday's every 2 weeks.  I personally find it therapeutic and a safer place to say the thoughts aloud that I might sensor around others who (thankfully) haven't lost a child.  There are just some things you cannot relate to or comprehend unless you have joined this group.  At the end of the group this week we were all asked to use one word to describe where felt we were in the process.  I have a difficult enough time trying to identify with one word as a description on a good day, and of course the minute the question was asked every single word left my internal dictionary.  I started by saying that it really varies depending on the hour, but overall, the word I chose was confusion.  I don't really feel that word does my emotions justice, but I cannot find a better word to explain the myriad of thoughts that consume me.

We spent her life on auto-pilot essentially, trying to find everything and anything to ease her symptoms and make her quality of life even just an ounce better.  We didn't dwell on the situation, in fact, I feel like at times we even embraced it.  My internal motto her entire life was that I didn't have to spend the time worrying about her death or what would happen after because one day it would happen and after that point, I would have all the time in the world to look back and relive it all.  It was one hell of a ride, so many emotions and feelings along the way placed on this virtual back burner.  Now here we are, a week shy of the 5 months marking of her death and that motto couldn't be unfolding more accurately.  We hustled, we made it all work, we balanced it all like it was a profession and then it just stopped.  Our 4 years 11 months and 23 days of making lemonade out of lemons was obliterated in an instant and now there is a calmness in our house that makes absolutely no sense.

I can't figure out how to even make sense of the situation much less any of my thoughts.  Is there even a way to do that?  Life for the rest of us continues to go on, but a hugely significant piece has permanently disappeared.  There are no more fights, emails, or lengthy phone calls between insurance companies, doctors' offices, and pharmacies over medications and procedures that "aren't medically necessary".  There are no more meetings, evaluations, service plans, or any amount of time needing to spend on those items.  No more hours are being spent organizing supplies, ensuring the appropriate supplies are en route or approved.  There are no more appointments, random hospitalizations, or even scheduled ones.  No nurses are opening my garage and letting themselves into the house or sitting next to me in the car listening to all my thoughts and becoming part of our family.  There are no daily medication times, no alarms signaling reminders, no extra precautions that are needing to be taken to go anywhere or do anything.  We aren't limited to when or where we can go anywhere having to consider its location to a large children's hospital.  There are no more sleepless nights due to the fears of seizures or pain disturbing her night. It all stopped, in an instant, and now there is just this deafening silence that is filled with constant replays of a life we no longer live leaving all the emotions once ignored to finally be addressed...and so there is...confusion.

17 weeks

Dear Sonzee,

Today is the first day of June, and at 1:08pm it will be 17 weeks without you.  Today also marks the last Monday of school for your older siblings and it would have been your second Monday of summer break.  Today is marking a lot of reopenings in Arizona as far as activities go and after much deliberation between aba and myself, we have decided to allow your siblings to start back at Hubbard at the end of the week.  They have a very strict policy set into place that makes us feel as comfortable as possible, however, it is with extreme sadness I inform you that the special needs program at this time has been placed on hold.  I have cried about it a few times now, I know it makes little sense since you aren't here anyway, and I do understand it is for good reason, but I am still so sad.  Aba and I have wondered if we would have begged coach Ed and Mr. Bob on the down low to allow you to go during a lunch break as an appeal on behalf of your quality of life.  It would have been extremely challenging for us to take that away from you, after all, your entire life we did our best to juggle a form of quarantine and balance your quality of life in all areas every single day.

I am having a very difficult time with the kangaroo paws in your garden, so if you could pop on over and sprinkle some life back into them I would be greatly appreciative.  I have spoken to at least three high-level moon valley nursery people and none of their advice seems to be consistent or helpful in keeping those plants looking as good as they did for the first 10 days.  Sigh, I knew it was a long shot, but I am still upset over it and unable to throw in the towel on them.  I haven't really been one to give up on anything related to you, so I will call this par for the course.  I would really like them to be as pretty as their neighboring milkweeds.

Today marks the beginning of CDKL5 awareness month.  I placed a new awareness sign in the front yard and aba placed one in Auntie A's yard.  I realized last night I should have done a fundraiser in advance and then sold the signs for your followers...live and learn right?  Auntie A says I can do it next year, so let's hope I remember in enough time to do so.  I am torn on adding the profile frame we made on Facebook a few years ago to my profile because part of me is still wanting to have nothing to do with that stupid string of characters.  I think it is still a little too soon for me to be spreading anything besides the fact that the disorder can steal more than just milestones.  I am aware that right now I am just not up to helping push for a cure and honestly no newly diagnosed parents want to hear that their worst nightmare can actually become a reality, heck, no currently diagnosed parent wants to face that death is possible either, so I think for now I will just keep the picture of you and me without any mention of CDKL5. 

Mimi's mom (Auntie Rachel) sent a rock to add to your gravesite.  It is really pretty and I placed it by you yesterday.  Meena found a heart-shaped rock over Shabbat in the front yard and she painted it yesterday and I will be bringing it to you tomorrow, along with a "my first Shavuot in Gan Eden" rock.  Sorry, it is late, when I went to see you Thursday I immediately realized I had forgotten to make one, so now it's been completed.  I sprayed all of your rocks with the clear coat acrylic spray again yesterday to make sure the sun doesn't damage them.  Tzviki is making your 4-month rock for Wednesday, I am excited to see what he decides to do.  I often wonder what your place looks like at night, are the glow paints still glowing?  Have you gone recently to see everything? 

Your siblings and aba have been using your swim spa, I personally cannot bring myself to get any closer than walking up the outside steps.  I don't know why specifically, but the thought of going in it without you is just something I cannot bear to do.  I didn't feel like explaining to everyone that I was going to cry if I stepped inside yesterday, so I just told them I wasn't in the mood to go in.  I am so glad that it is being used, but really you should be inside of it.  Your siblings are constantly arguing over who uses your pool floats, you should pay them a visit and let them know that isn't nice, maybe they'll listen to you?

I hope that wherever you are isn't as crazy and unsettled as it seems to be here these days.  I hope you aren't alone and someone is there to guide you as you navigate everything.  I hope and pray you can come and visit as often as you like, and I really hope you aren't in any pain or having any seizures or discomforts.  I hope I am ready for you to visit at some point soon because I really really miss you.  As always, stay safe and know we all miss and love you.

Love always,
Ema

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.

Twice.

I’ve been sent spinning twice in 24 hours.  Both times it was as if I was standing in a dark hole while a circle of light spun around me taking me back in time.  Both times it lasted for a split second.  Both times I stopped breathing.  Both times I had to remind myself she was gone.  Both times felt like a smack in the face.

On Friday I came home from visiting Sonzee to Sam telling me to go to her room.  I washed my hands and stood in the kitchen longer than he wanted me to and prompted me again.  I detoured to her little brothers room to put something away and her older sister stood in the hallway facing Sonzee’s room, hands cupped over her mouth saying “oh my g-d Ema, you’re going to love this”.  Intrigued I walked now quicker into her room to find baby brother asleep in her bed.  Big sister then promptly says “but isn’t it unsafe, Ema?”  I removed the railing from the side of her bed about 6 weeks ago, there was no reason anymore for it and it hurt to see it there, but now her 2 year old brother lay in her spot.  Turns out he put himself there to read a book before nap time and Sam had gone to the kitchen to grab his milk and he fell asleep without him knowing.  About 2 hours later he was waking up in a cranky mood so I climbed into bed next to him.  I closed my eyes and for a split second I was back to the last 2.5 weeks of her life.  The same spot, next to a warm tiny body, except I opened my eyes and it wasn’t hers. Dagger to my heart.

On Saturday evening we went for a family walk and stopped outside my sisters house.  We talk through her front window which is tall and wide enough for both our families to see one another.  My niece excitedly runs to the window wearing an all too familiar nightgown.  I bought the nightgown last summer in NY for all of us girls.  “Matchy, matchy” with Ema and her girls. Except now pretty much all of Sonzee’s clothing is being worn by my niece.  So I see her in the nightgown and my heart skips a beat, “Wait! How does she have that nightgown that’s Sonzee’s” I turn my head around quickly behind me in a panic, as if we forgot her on our walk.

How did my mind forget?  What was it thinking? (I guess it wasn’t). Should I just be thankful this is the first time in almost 3 months it’s happened?? Should I expect it to occur more? Why all of a sudden now? My heart is already in the tiniest pieces and then these milliseconds of panic mixed with the idea she’s here break those pieces even more when I realize it’s just a trick my mind is responsible for.  Maybe this is the price to pay for “being in my grief”.  For allowing myself to begin to acknowledge the reality I have been trying to hide and escape from.  Maybe this is just all part of the process of the journey, I just wish it wasn’t as blind as the journey of her life was.

April 16

Thursday, April 16, we meet again.  Who knew that 5 years from the day we first met I would be honoring you alone, missing the crucial piece that gave you whatever meaning it is you now have.  You are a day that I honestly don't think about for an entire year after you pass, but a day that I dread as you creep slowly towards me on the calendar.  I wonder if there will ever be a time I am at peace over what it is you actually represent.  I wonder if you will ever hold a bigger purpose than to just be another horrible, nagging reminder of all the pain that you brought with you that day in a small square office off of the 101 and 51st Avenue.  I wonder if I will ever forgive you for now being another day that I can no longer spin into something positive because allowing you into our lives ultimately allowed you to take her away.

April 16, you have always been a double-edged sword for me.  I have always tried honor and give recognition to what you have become, a date of vital significance, but one I wish didn't exist.  You will always be a date that I pay homage to the fact that you brought us an answer, albeit one we never wanted and one that at one point we didn't think could even exist.  You will always be a date that changed the course that our family was taking, and maybe one day I will realize it was for the best, it was something we could handle, and it was what was meant to be.  Somehow I don't think any of those sentiments will heal my heart, and they don't offer an ounce of cushion for the havoc that we all have endured over the past 5 years.

It has been 2 months and 13 days since she was taken away from me. 2 months and 13 days since I last got to feel her in my arms and since I last gave her a kiss.  It has been 2 months and 13 days since we became a physical family of 6; two boys, two living girls, and a daughter who died.  It was 2 months and 13 days ago that the fear that was always attached to the string of letters that was printed on the piece of paper no longer was fear but real and tangible.  But if I am honest with you, it was on our first encounter, 5 years ago that you essentially stole her from me.  In exchange for a measly piece of paper you took every dream I had for her, every dream I had for her and her siblings, every dream I had for our family, and every dream I stopped making that day.  If I loathe any day of the year, it is today, April 16, and while I am unsure if that is fair given you were just the messenger, I don't know if you can ever really be forgiven.

10 weeks

Dear Sonzee,

Today marks 10 weeks since you were last here.  We are already halfway through Passover and almost halfway through April in general.  All of your siblings stayed up for the entire Sedar both nights.  It was really mind-boggling to me that it was still just as late as every other year even with it only being us.  To be honest, I was not really feeling all of the laughter and holiday spirit the first night, but by night two I managed to get myself into character and read in silly voices and it was fun.  We finally remembered to wear the face masks for the 10 plagues, and since you know how dark humor runs deep in our house, Laeya thanked you for taking the position of death of a firstborn.  We did remind her that she wasn't the firstborn son, but, she was thankful nonetheless.

I have been reading in many books and have been told by other bereaved parents to do something a little different for holidays since it will be challenging enough to not have you around in general.  I decided that I would start by buying myself a bouquet of flowers, once I got onto the website, I decided to just go all out and buy the biggest one that had the most variety of colors and said "Sonzee".  The one I chose has various types of flowers and a multitude of bright colors.  I hope you would approve of them.  I placed them on the center of the table when they came and was proud of myself for "changing it up", but then when I looked over at them during the Sedar I couldn't help but get tears.  I swallowed them up pretty quickly, but as usual, I didn't expect that to happen.

This whole grief journey is almost more of a roller coaster than living life with CDKL5.  At least, for the most part, the ups and downs came in waves that were slow building to start but then turned into Tsunamis.  This is more like a series of 10 feet waves that pound the shore and then vanish into calm seas where you question if the waves were really even there.  My heart and mind change by the second.  I used to be able to take things day by day, but it seems now they are literally broken down into just minutes.  I can get two people checking in on me within 5 minutes and my desire to reply or the words I want to say can be vastly different.  I tend to stick to the emoji kiss in the majority of my "not up for talking" moments, because it sums it up.  I am appreciative for the check-in, I know they want me to know they are thinking of me, but my heart isn't in a place to reply with words.

Your little brother, the king, slept too late yesterday for us all to make our weekly family visit together to see you, so Tzviki and Meena came.  They borrowed two rocks from your basket, but don't worry, they are all painted for me to return to you today.  I am going to bring some clear acrylic spray paint to cover all of the rocks already painted because I am afraid the sun is going to wear them down over time, and that thought alone is making me anxious.  I am sorry I haven't painted any new rocks this past week, I was getting worried if I continued, I would use up all of the room this year, and well, we have decades to go.

Noam has been calling out to Laeya shortly after aba or I have read him his 193837 night time stories.  She climbs into his bed and they talk.  You would be flabbergasted by his speech these days, there are times throughout the day where I do a double-take wondering if it was really him who just spoke to me.  He has become the cutest, most yummy, insanely adorable two-year-old.  Aba has been a bit bummed lately because he has not been requesting the "Dondee book", I have reassured him he has his own form of grief as well.  During one of Laeya's and his evening chats, Laeya came out to inform us that he couldn't go to sleep because he was missing Sonzee.  I sort of gave aba the "aha. I told you" eyes, complete with a head nod, but deep down I was holding on by a thread to not cry.  I am so thankful they all have each other.  You should know that you are going to be the glue that keeps them so closely bound together for the rest of their lives.

Laeya told us you were in one of her dreams last week.  She said you were a superhero, complete with the cape and all and you came to save the day between a little rift that was occurring.  I think it is fitting since she wrote that essay where she considers you her superhero.  Aba was a little jealous you haven't visited him, but I told him that he and I just aren't ready yet.  I don't know if that helps him at all, but it makes it a bit better for me.  I was told that you will come when you know we are ready for you.  I do wonder what ready means though I am doing my best to trust you will know best in this situation, just like how you always trusted me when you were alive.

I have been doing a lot of daydreaming of wherever it is you are.  I have been trying to figure out how it works in Gan Eden with social circles.  Did a flood of people come to surround you when you first arrived?  Since then who have you met?  Where you waiting to meet the famous Charlotte because of her impact on you?  She was the one who inspired us to try medical marijuana for your seizures.  Did you meet Anniston who had a different genetic mutation that caused Krabbe but whose story Ema followed for years albeit her different struggles from yours?  Were you able to meet up with Harper yesterday to celebrate what would have been her 10th birthday?  I know Miss Penny and I wish so badly you girls could have met when you were both alive, I still find it challenging to believe you are both gone.

I would love to know who you have met over the last 10 weeks?  I wonder if there a waiting period before you get to see certain people or do certain things?  I guess I will have to settle for waiting for all of these answers, but until then, please continue staying safe, and remind yourself that we are carrying on down here no matter how difficult the days and that we love and miss you greatly!

Love always,
Ema

World of grief

This past week has honestly been a really tough one.  Maybe it's because as of writing this blog it has been 9 weeks, 1 day, 11 hours, 36 minutes (and counting) since she was here.  Maybe it is because I have virtually sat in on two circle times with kiddos who are Sonzee's age and who go to her school.  Maybe it is because in less than 24 hours we will be celebrating our first of many big holidays without her here.  Maybe it is because this week alone two other families were forced to say goodbye to their daughters.  Maybe it is because it was challenging enough to live a life in the world of medically complex, but it is nearly impossible to live in a life without it.  Maybe it is because Sonzee's sister is also having a tough week and I hardly know how to manage my own grief, it breaks me, even more, to make sure I am there for her how she needs me.  Maybe it is just because life gives you lemons.

I wish the multiple vats of lemonade I made this week (to rid it from our house for Passover) made a slight bit of difference.  But truthfully, there is really an insignificant amount of lemonade that can be made out of having to bury your 4-year-old and then live the rest of your life with the constant reminder that you did.  There are no sufficient answers to so many why questions and the answers really don't matter in any case.  There is only so much that can be done to help the confusion, pain, and understanding to a 10, 8, 6, and 2-year old sibling.  After all, what they should have only known was the amazing joys and typical challenges that having four additional siblings meant.  There should be three little girls in matching outfits fighting over headbands and socks.  There should be another doting sister dragging around the 2-year-old.  There should be another girl part of the club not allowed in her oldest brother's room.  There shouldn't be a huge piece of the puzzle missing causing the completion of each of their individual puzzles impossible.

I wish there was an end to this grieving process, that there was a class I could enroll in and upon completion, I would graduate out of mourning.  I wish one day I would wake up and feel completely whole again, yet every book I have read has prepared me for the fact that this is a journey in and of itself, a marathon if you will, one that isn't going to end but one that will continue to evolve and change throughout the years.  Sadly, I know what that means, and in 7 days from this post, it will have been 5 years since we began Sonya's Story: A journey with CDKL5, a marathon that has proven itself impossible to finish.  Despite the many medals we might have accrued, despite the number of water breaks that were taken, despite the small celebrations and minute victories along the way, and even without her here to be with us physically, we will always be living a life intertwined with CDKL5, and so too will our family forever be living in a world of grief. 

Settle

If we had been quarantined in a world that still had Sonzee I would be participating in family handprints with cute little sayings about being stuck together.  I would be trying to find a photographer to stand on the street in front of our house and take pictures of our family being us in the driveway.  I would be figuring out every unique opportunity that was around and succeed in making it happen.  However, quarantine was late, or was it Sonzee was gone too early and now the thought of making permanent memories in her absence crushes my already broken heart more than I thought was possible.

That's the thing I am learning about this grieving journey.  Some days can still get worse, it is actually possible to have an already broken heart shattered into smaller pieces.  I assume the struggle between parenting Sonzee's siblings while honoring her absence is going to feel insurmountable at times and at other times doable.  I assume there is going to be a constant give and take and an alternating sacrifice between which side will be honored.  I assume I will eventually find a way to compromise in a way that still leaves my heart yearning for what could have been, but comforted by the way it all came together.

I cannot stomach leaving her handprint out of our family, but I don't have her here to add it in.  It hurts to have a family picture without her face distantly looking off.  There is already excruciating pain to have to accept that she isn't here, but then to have it be in my face while looking at an image or on paper seems like it will be a punch to my gut every time.  I know there are various ways to incorporate her into every project, but it hurts that she isn't here to be involved, and it hurts to have to settle.

Navigating

Dear Sonzee,

In a few more hours it will be 8 weeks since you were last here.  Didn't I just tell you it was 7?  I cannot believe Friday marks a full 2 months, it will also mark Ema's bestie Elle's birthday, so that will allow the clouds to part a bit.  The tears still fall at the drop of a hat, the pain still feels just as fresh, and the weight on my chest feels just as heavy.  Yesterday we had a really nice family day, the 6 of us, it almost feels wrong to admit that to you.  I promise though all I did was think about where you would have laid in the grass with your siblings, and how I would have made you go on the slip and slide with me; although you would have hated the cold water.  Noam would have sat with you since he refused to go on it because boss baby agrees with you on the water needing to be growing bacteria to get near it.  We all went into your swim spa to warm up, someone (yet of course none of your siblings will admit who) made it 91, don't worry, we adjusted that quickly back up to 94, we all know how you like it.

The last two times I have gone to see you there have been rocks painted and left for you.  I love the surprise, and even better is after I make a post the person sends me a text to let me know who it was.  I cannot tell you how much joy it all brings to my heart but it also hurts me to know others are having to miss you as well.  In case you don't know, missing you really hurts.  I don't wonder if it will ever feel better, I know that it would be impossible.  You have left quite a void for so many, I hope you realize how special you were, are, to a lot of people.  Meena slept in your room on Saturday night, Laeya Sunday, and Tzviki has requested tonight.  The only bit of guilt I feel in regards to him and your last few days is that he asked to sleep with you and I told him "not tonight" and then it never happened; he has reminded me of this at least two times since you left us.  I am so sorry if you are upset about that as well, I should have just let him, I don't know why I didn't; but tonight and whenever else he asks me to, he will be there.

I gave Auntie A all of your clothing, it wasn't that difficult because 95% was from your sisters, and it always goes to Ziva after you.  She has insisted on wearing the outfits practically every day, it makes me smile when she walks by the house in a familiar combo.  She and momo were talking about you the other day and Auntie A sent me the recording of the last part.  I know Ziva has been missing you a lot, and she was talking about you.  Mo said you will always hear them talking to you because you are in the sky and you were with Hashem.  Neither Auntie A nor I realized how much your absence would impact Z, so maybe if you could add her into your watch list if you haven't that would be so great.

Last week I took another picture at your grave and received a text from Coach Susan pointing out another heart crept it's way into it, this time the shadow was the heart.  I am starting to really think you are somehow doing this on purpose.  I think I am too afraid to admit that it really could be a sign from you, but after the third time, I promise I will stop doubting (hint, hint).  While we are on the subject, if you could just find a way to let me know you are doing okay, ema could really use the reassurance.  It has been really challenging to not be able to check-in, to not be able to call and have someone tell me you are doing well, to not know you are feeling ok, to not know you really are alright, to not know you have made friends, or that someone is taking care of you, or at least is there for you when you need it.

Navigating life with you feels similar to being dropped into the middle of a jungle in the fog with no compass.  I think the busy work of being back to writing progress reports, IEP's, and present levels has helped me keep my footing, but it is easy for me to falter when I see the dates of birth of the kiddos in my classes are younger than you or your age.  The days are starting to have more moments where the tears don't force me into hiding or make me turn away so no one catches the twinkle is there.  But then there are times where a simple thought brings a tidal wave right back at me. I know this is going to be an even slower marathon than living your journey with CDKL5, so I am learning to give myself grace.  I just hope and pray you are not having the same difficulties navigating your new world without us, and if you find yourself having one of those tough days just know it's allowed.  Remember that we miss you beyond words and to stay safe.

Love always,
Ema

Painting rocks

Over the last two days, I have spent 3 hours coloring rocks.  Saying that makes my eyes squint and my eyebrows furrow, coloring rocks?  I don't understand how 3 months ago I was measuring out medications and matching bows to her outfits and now I find myself sitting on a sidewalk with my legs stretched out onto a surface of rocks while my hand reaches for different acrylic markers to use to color large rocks that bring life to her place of death. 

There is typically the perfect breeze that meets me shortly after I arrive, or maybe it just takes me a little while to notice it is around me.  I wonder if there is a notification system that lets her know she has a visitor.  I sometimes wonder if the wind is a greeting from her letting me know she knows I am there.   I wonder if she has the option to sit with me while I am there, and if she has the option, I wonder if she does?  If she knows, I wonder if it brings her comfort that I visit as often as I do, or does she wish I wouldn't?  Funny how I still second guess my parenting of her, I guess some things just won't ever change.

The main thought that fills my mind while I color her rocks is, "how is this my reality?"  It is almost some horrible irony that after close to 5 years of my parenting of her requiring me a tremendous amount of thought to ensure she remained alive, my responsibility has now been diminished to a completely mindless activity such as coloring.  As if it is intended to be some trade-off or some reward, but instead it just feels like my own personal form of capital punishment.  I am not supposed to be sitting in a cemetery coloring large rocks because I don't like them being stuck in a basket.  I am not supposed to be repurposing a room that was specifically constructed solely for her.  I am not supposed to be thinking about how our quarantine would be looking right now had she been alive.  I am not supposed to be sitting in a cemetery because my four-year-old daughter died almost 2 months ago. 

Instead of even entertaining that time might help, I just feel like every day becomes harder.  Every day is another one that she wasn't here for.  Every day is another one that makes her actual loss that much further away.  Every day makes it the new longest since she has been here.  Every day just makes me miss her differently, miss her more, and miss her a new too much.  I don't wish we should go back to her enduring all she had to, but I do wish I could do more for her than just painting rocks.

"Dondee"

Every night when Sonzee's little brother goes to sleep he requests to read his favorite book, or two, or sometimes three.  They are usually the "poo-poo" book (Old McNoah), "Never touch a dragon", or "10 tiny racers".  He will dictate where we are going to sit in his room.  It used to be us snuggling in his rocking chair, but now it has turned into us squeezing onto his bean bag or him in his little rocking chair and me on the floor.  After we presented him with his "Sonzee and I" book the other day we would ask him if he wanted to read it after his first book at night, both Sam and I have read it one or two times, but it has not been a book of choice.  So last night with his first book choice in my hand, and his milk bottle in his, we begin our normal routine. 

We both alternate singing the words to "Old McNoah built an ark", with the slight adaptation of "McNoam", because it sounds cuter to use his name.  He brings "two tows" and they "moo-moo heee and moo moo da".  Then he gets "two ducks" and they quack (although I won't lie, he totally substitutes an "f" for the first "q").  The book goes on to discuss pigs who go "oinkee", and lunch being served that turns into it becoming quite smelly (hence "poo-poo" book).  The rain starts to fall, the ark goes "oopsie daisy" and then dry land is spotted, "ya-hoo", and of course "e-i-e-i-o".  The book finishes and little brother pops up and walks towards the middle of his room.  I plead with him to come back for another book, he says "Dondee!", I am not sure what he is saying exactly.  He reaches up on the dresser, "Dondee!".  Then he grabs the book.  "Oh...you want the book of you and Sonzee"

"Dondee Book".

So he brings it back to sit down and we begin to read.  I have read this book to him already, I wrote the book, it has only brought a huge smile to my face, except last night when it became requested book #2.  Fighting back the tears he let me read every word not rushing to turn the pages.  He had me read it a second time pointing at her picture every time while I said "Sonzee" and then pointing at his picture while saying "Noam".  It is always a moment like this that catches my breath, one that makes me smile with such joy and happiness, yet simultaneously breaks my heart.  It is one thing to have to sift through my emotions and the pain of her loss, but to know her baby brother aches for her is just such an addition of pain to this already horrible process.  I am so thankful this book will give him (some of) the comfort he clearly needs, but I wish so much that he could just walk into her room or see her in her PPOD and say "Dondee" with the same excitement he does when he sees her picture in his book, like he always did.

Feel the grief

"Try to accept where you are at.  Feel the grief instead of fighting against it."

The above are words written on a page in one of my child loss grief books; my eyes swell with tears every time I read them and my heart tells me it's solid advice, but for some reason, my brain is too stubborn to even consider their suggestion.  These words echo the same advice that was shared by a holocaust survivor I recently attended a lecture of, I know I should be following them.  Yet, I have had similar difficulties over the last 5 years accepting where I was at with her CDKL5 diagnosis, so I can only imagine how this whole acceptance of my current state of grief or really of her not being here is going to unfold.

I have been having difficulty accepting anything about what occurred 5 weeks ago; especially that it has been five entire weeks, that it has been more than a month, that it has been around 50,400 minutes, really that any amount of time has gone by in general.  I know she is not in her room, I know she is not in our house, I know she is not at an extended stay at the Ryan House, I know she is not here on this earth, I know exactly where her body is located yet I cannot allow myself to actually process that.  It is significantly easier for me to remain in this land of denial and not accept any of it, versus feeling all the feelings that any level of acceptance would bring.  I am sent into an immediate state of panic if I even consider feeling, and the pain is just too much to bear as it is when any amount of tears fall from my eyes.  I cannot possibly justify feeling any more of this.

I allow myself to feel grief in moments, in small doses, in an almost tangible amount, but anything more than split seconds of acknowledgment is just more than I can even consider.  Maybe where I am at is "fighting against it" and at this current moment that is just where I am going to need to remain to continue to be a functioning member of society.  Maybe in a sense, I am actually accepting where I am at, that I am unable to fully feel the reality of grief.  I guess, for now, that is going to have to be my attempt at trying because I am just not ready to feel any more grief. From where I am sitting, "fighting against it" is actually a whole lot easier than feeling, and to be honest I am not sure if either way is right.

Fine

I was doing fine yesterday.  Well, maybe that isn't exactly the truth.  I should probably be honest and say I was doing fine because I have almost perfected the art of ignoring potential triggers.  I know I should stop ignoring them, I know I should allow myself to really feel the emotions as they come and let everything out, but I am just not ready yet.  I know that doesn't sound all that intelligent, because when will I ever really be ready?  I do not have that answer, but I know for right now it is just too much.  So like I was saying, I was doing fine yesterday...until I took my oldest to swim.

Two weeks ago Sam took our youngest to his swim class who also happens to be with Sonzee's coach Ed.  He mentioned to Sam the pink float that he really only used with Sonzee was in the same spot since the last time she used it.  He mentioned he couldn't bring himself to move the float (thankfully no one else has either).  I get it.  Sonzee's pacifiers and glasses still hang in the same spot since the last time we removed them from her.  Her backpack still hangs on the feeding pole, her cell phone we used for seizure tracking hasn't been moved from the pocket in her bag, I honestly doubt it is even on since it has not been charged in close to a month. There are just some things that take time.

I have been to swim multiple times since Sam told me about the float, but for some reason, I didn't think about it any of those times.  Then yesterday, I took my oldest to her swim class.  I sat down in the same chair I always sit in facing the pool, just sipping my iced mocha, and there it was, the pink float not on the hook, sitting in a crate staring at me.  It wasn't up on the hook, it was just sitting in the crate waiting for "the next time" it was going to be used by Sonzee.  Clearly, a lot of us were just not ready for no more next times.  I don't know how I will feel when the float is eventually put back up on its hook, but seeing it in the crate and realizing she hasn't been at swim in 6 weeks made the tears fill my eyes. 

Having the float down helps my heart to know how loved she really was, it is a clear reminder that I am not the only one missing her or feeling a void.  I guess a lot of us are just not ready to accept that she isn't coming back.  Or maybe it is just that we know that she isn't, but we would rather not have things constantly remind us of that fact.  Maybe for now it is better for some of us to keep some things the way they were so we can have more moments where we are fine. 

For now

It's been 11 days since I last officially parented Sonzee.  The numbness of it all is slowly fading, the auto-shutoff mechanism that my brain so kindly installed is beginning to malfunction, and I am having more difficulty figuring this whole portion of the journey out without her.  Yet at the same time whether she is physically present or not, the whole mothering component apparently doesn't go away, it just changes.  Instead of managing her medications, calling doctor's offices and insurance companies, making sure her supplies are arriving and keeping on top of nursing and the billions of other items that I took care of for the previous almost 5 years of her life, my mothering has turned into making sure the pinwheel at her grave points the right direction to spin in the wind, organizing the rocks around her plaque and planning the perfect headstone and accompaniments for her plot.

I honestly never thought about what parenting her would look like after she was no longer here.  I didn't even know it was a thing to consider.  I didn't consider that I would need to find a way to continue being her mom, I didn't consider that I would begin to fear that one day there might not be anything left for me to do for her.  While I did wonder who would take care of her, who would make sure she was looked after, who would play the role of her mom, and who would hold her hand while she crossed the street, I reassured myself that she would not require her medication, physical assistance, or most probably even require supervision.  However, no matter what I tell myself, the innate mothering in me is having some difficulty accepting those facts.

I was only four years 11 months and 23 days into my special needs mom role.  I was finally feeling pretty confident in my ability to mother her.  I was finally feeling that "I got this" attitude because I did.  Looking back I remember those first days of the NICU, those first days of constant doubt, those first days of seizures, those first days after her CDKL5 diagnosis, those first days after every single missed milestone, and those first days after every answer the doctors' gave me didn't quite add up and I was left with doubt.  While I never fully accepted that she was meant to suffer, or that she had a CDKL5 diagnosis, I eventually accepted that my lack of acceptance was ok.  I eventually accepted that I didn't have to agree with the story she was sent here to tell, it wasn't my place. So I know eventually I will accept that I won't accept not mothering her in the same physical manner I will my other kids, but for now, I will give myself another 4 years 11 months and 23 days to even consider it.

Crumbs

When my oldest was 16 months old I enrolled her in a gymnastics class in north Phoenix.  At the time I was 8ish months pregnant with her brother.  We began going on dates after her gymnastics class to a local coffee shop.  She got her cookie and chocolate milk and I, of course, some form of coffee.  When her brother was born he tagged along, first in a carrier, and soon as a member of our special time.  Eventually, my older two began preschool and my dates became with our 3rd and Sonzee in tow in the carrier or stroller.  3 years ago when our middle daughter began school, the dates stopped.  Sonzee wasn’t enrolled in gymnastics and while I could have taken her to a coffee place and drank coffee with her in her stroller, it just wouldn’t have been the same.

When our youngest became enrolled in gymnastics this past fall I was looking forward to having our dates.  It had been a while since I had a date with a toddler and I was so ready to start them back up.  Fast forward to this morning.  We have about an hour and 10 minutes between the end of gymnastics and getting sonzee from school, and boss baby is finally at the perfect age to have his attention focus on a cookie and chocolate milk for more than 5 minutes in a chair, so off we went on our date.  I snapped pictures, he picked out his chair, I was so excited to be sitting there with him, and he appeared to feel the same excitement.  Then I saw the crumbs.  Little tiny toddler crumbs on the table, on the chair, on the floor, just staring at me so I grabbed a napkin to wipe them up and then this emotional tidal wave washed over me.  Crumbs...the same ones I used to apologize for when we went to this same coffee location with my older kiddos and they were all over the place.  The same crumbs the employees used to smile off at me and say “don’t worry about it”, while they grabbed a broom and swept them up.  The crumbs that toddlers make but ones that Sonzee has never gotten to make.  Cue to the tears.

Now with glossy tear-filled eyes, staring at my son trying to not let the tears fall as I was wiping up crumbs in a coffee shop while trying to get over the emotions quick enough to enjoy the moment of actually being on a date.  So many more of these moments keep happening.  It's always dual-edged, the same thing I am not taking for granted fills me with dread because Sonzee couldn't or cannot do it.  The pain of it continues to get worse for some reason the older she gets.  Sure she can unhook her feeding tube and her stomach drainage and make a wet mess, but the reality is, she cannot and won't ever be able to make any crumbs.

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. 

1000 words

They say a picture is worth a thousand words.  That was the very first thought that popped into my mind when I received the email from Shutterfly that Sonya's school pictures were ready to be viewed.  I had spent the last week in anticipation of seeing hers since her older siblings all received theirs already.  I quickly opened the email and then paused.  Or maybe it wasn't so much a pause as I got smacked so hard in the face I had to pull myself together.  Maybe it hit so hard because things are completely all over the place in our house this week?  Maybe it hit so hard because I am a firm believer in never doing retakes because whatever occurs during the picture is the reality of life in that specific moment?  Maybe it hit so hard because I initially had forgotten about what actually occurred on picture day in the first place and after a quick moment I was jarred back into reality.

I debated between this two-piece outfit and its fraternal twin whose shirt was a dark shade of greenish blue.  I had been voting on the darker shirt but was vetoed by others who felt the mustardy yellow was brighter and better suited for picture day.  I obliged.  I picked out 2 glitter ponytail bows and let nurse Paige do her thing (clearly she is always on point as evidenced in the image below). The morning of picture day I told Sonzee numerous times "your pictures are in the morning, please wait and seize after".  When I dropped her at school a little after 9am I gave her a kiss and reminded her again to just hold off until after her pictures, and then got back into the car.  Within 8 minutes I received a text that said "Ugh. For real. Pics are at 1030".  Nurse Paige mentioned they were going to try and fit her in at a different time after she woke up, and I replied: "ok, if not it's the life of Sonze".  They waited, put on a horse and pony show-pompoms and all and nurse Paige said: "she is just sort of blah". 

A month later and I forgot.  I forgot how much I dislike CDKL5 and I forgot how her mutation causes issues in every. single. domain.  I forgot that I don't exaggerate when I say "she seizes all the time".  I forgot that no matter what medication we put her on it won't take away the negative effects her frameshift mutation causes.  I forgot that she gets absolutely no say in how her body treats her and how much she has to always endure.  I forgot that even though a picture says 1000 words, Sonzee cannot say one and we won't ever know what she must have felt like after she endured one of the literally (conservatively averaged) 5,000th seizure she endured before being placed in this chair.