Friday, February 28, 2020

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. 

The Mighty Contributor

Monday, February 24, 2020

Time



It’s been 3 weeks. When I say that it sounds like it has been hardly any time, yet the reality is that it feels like it’s been so long.  At the same time everything about life with Sonzee feels like it was just happening yesterday. I can look at the pictures of her life each day as they pop up in memories from over the last 5 years and tell the details surrounding the image, but I cannot believe it’s been 21 days since I gave her a kiss and carried her out of the house for the last time. I feel like I’m traveling in a train through a tunnel at full speed looking at a blurred landscape flying by.  I’m fearful of the train slowing down.

I’m torn in a mental limbo, worried about what will happen when my brain admits that life without her now is permanent, that it will be my forever, and wondering how even though it was four whole years she spent with us I feel like I have to remind myself she wasn’t just a dream, she was actually here, she did actually live.  I have pictures all around of her, equipment of hers unoccupied in our room, the supplies that literally kept her living for all of her life in the hallway, everything is unavoidable, I see constant reminders of her everywhere, yet it all feels like none of it happened.

I find myself wanting time to stand still so I don’t have to accept the time passing by without her, but I don’t want to deal with life without her in it, so I want the time to keep passing by.  I want to keep her things around as a visual reminder that she once lived in our house, but I want anything anyone else can benefit from to get out and I want the rest of the daily reminders gone.  I dislike the yin and yang going on in my mind, I wish I could figure it all out today...but I guess it will just have to all come with time.


The Mighty Contributor

Friday, February 21, 2020

Part 2: Firsts

During the last week and half of Sonzee's life, Sam asked me what I would say when someone would ask how many kids we had.  Despite being a planner in general, for a lot of Sonzee related items, a common response from me was, "I don't know, I will see what happens when it happens".  I don't recall what his answer was, but I am fairly certain I turned the question around as a standard conversational gesture.  I won't lie and say I never thought about what my response might be, but I did feel as it has always been with Sonzee,  that it would be dependent on the circumstances, on what I was feeling, on who brought up the question, and a various amount of other unknown variables.

Fast forward to this week when I ran into a mom of a child our oldest used to dance with, her second daughter is now ice skating with our middle daughter.  It was nice to be talking about the older girls and catching up on what they are now up to, but then it happened, catching me off guard.  The innocent statement was said,  "You have four kids right?"  This direct statement was not one I prepared for, I didn't anticipate the question would be asked in that manner.  She wasn't wrong though, I did have four children when my oldest was at dance.  The four children she was referring to included Sonzee, who at the time was a baby.  My brain quickly wondered, how do I answer this?  What do I say?  I don't know what to think, I don't know what to say.  I can't let her think Noam doesn't exist, but Sonzee is no longer part of the active count.  

After what felt like an eternity to me, I began to speak, but my brain wasn't connecting to my mouth.  It began with, "well, umm...so yes I did have four, then I had five, but now I have four."  I don't know if I paused at all, or what her brain was doing while I spoke, but I followed up with more rambling.  "Well, so, my daughter died 2 weeks ago and she was the 4th child you are thinking of, she was a baby at the time, the one with special needs, but then I also had another baby who is now two, and so I had five, and now technically I have four, yes, but really five."  She, of course, felt horrible for bringing it up, and then, of course, my verbal vomit continued by saying, "oh it's ok, it's just you are the first person to ask me the question since she passed and I haven't figured out how to answer the question" Which again, I could tell made her feel awful.  SIGH.

Why didn't I just say I have five kids?  Besides that being an easier answer, it is the truth.  I have five children, but yet, I don't.  I am not actively caring for five, it is almost like that cheats the system to say I am parenting five kids.  I am no longer a mother of five who "gets what having five kids is like, and one who is special needs".  I no longer have five car seats in my car.  We no longer book travel as a family of seven. We are only six in the count of RSVPs.  We now have two empty seats in the car.  We now have a completely empty trunk where a wheelchair used to reside.  We actively have four children.  Yet saying we have four children feels like I am erasing Sonzee, it feels like it is lying, it feels like I am choosing to not acknowledge her.  But saying we have five children feels like I am not honoring the reality, it feels like I am misleading others, it feels unfair to Sonzee.  I still don't know what the answer should be.  I am well aware that there are going to be a lot of other firsts along with this new chapter, but I am just not so sure I am going to be ready for them.


The Mighty Contributor

Thursday, February 20, 2020

Dear Sonzee: An update

Dear Sonzee,

I should be working on something for your celebration that is in two weeks, but I just can't right now, and I am so sorry about that.  I worked on it here and there today, and honestly was much more productive with it than I have been, but I cannot bring myself to sift through more pictures right now. Instead, I put a song on repeat that I have always known would be fitting for when a day like this was bound to happen, relocated the box of tissues to within hands reach, and decided to write you a letter.

I am not sure if you received Laeya's invitation to her school event Thursday (today), she asked me if I thought you would be able to come.  I told her if you could, you would, but I wasn't sure what else you had on your schedule.  If you have a free moment between 2:55 and 3:45 AZ time, maybe you could drop by and knock her poster over or have something fall around her to let her know you popped in.

I took Auntie A with me to see you yesterday.  She did really well considering the cemetery isn't exactly her most favorite place to be, and honestly, before it became your new home it was the last place on this planet anyone would ever expect to find me.  Yet it is the only place on this earth where my heart doesn't actually hurt and I feel like I can fully breathe.  I know for a tiny fraction of my day I can find some peace and I hate when I have to leave.

Your little name plaque is becoming completely covered by all types of rocks.  I ordered a red wire basket to hold some of them so it doesn't get too cluttery over the next few months and hopefully it will be here before I go to see you later on today, if not I will bring it tomorrow.  I cannot wait for 8 months from now when you have all of the adornments up.  You will have the most perfect headstone, a yahrzeit candle area, and a beautiful bench. 

During bedtime last night Meena told aba that you were the one picking out the book to be read.  Aba chose the book he thought you had chosen, but Meena immediately corrected him and told him that was not what you chose.  She wasn't happy after that book was done though because she wanted to read her choice book since you chose the first book and aba said "one book".  Meena keeps saying you are around the house, you know we are always hesitant to trust that one, but I am starting to believe her a little bit...or maybe I just really want to.

Noam has started to ask where you are.  I tell him, "not here", and he asks "home?", and I tell him "no, she is not home", he then asks "Paige?".  I think he finally figured out you two are not the same, but it is so hard for him to understand you aren't coming home and nurse Paige isn't coming over.  To be honest, there have been a few mornings where I have to remind myself nurse Paige won't be opening the garage either. 

Tzviki scored at his tournament this past weekend.  The rink wasn't so cold, but I wore your beanie in your honor the first day anyway.  I wore the sequin red boots and received so many comments.  You probably would have loved the rink because the wheelchair seating was at the top and you would have had a great view, the wall in front was all glass too.  I didn't miss you kicking off your boots though, that would have been a pain because I know you would have sent them over the glass wall multiple times since it was only half height.

Aba and I are continuing to figure out life without you, but we are starting to realize there really is nothing to figure out.  We both feel lost, we both feel like we are missing something, and that isn't ever going to change.  No amount of time is going to fix your absence.  No amount of time is going to make this better.  It will be just how your original diagnosis of CDKL5 was for us.  Always there, never changing, something that we will just have to learn to live with no matter how difficult and painful it continues to be.

We really hope you are having a fantastic time wherever you are, and I hope you aren't being too carefree with your freedom.  Be safe and know you are extremely loved and missed.

With love always,
Ema


The Mighty Contributor

Tuesday, February 18, 2020

Surviving

It's been 2 weeks and 21.5 hours, or 14 days and 21.5 hours, or simply 358 hours.  I read somewhere that life will now be divided into before and after segments, that does seem to be holding true.  I supposedly have gained all of this time not having to care for her physically anymore, but yet I cannot seem to find time to do anything.  What did I do before?  I remember thinking about that after each time we had another child, it never really did make sense how the number of hours in a day didn't change, yet there was more to do and somehow there was room to at least half attempt a good job at completing all the responsibilities.  So here I am almost 15 days later, not working, not taking care of Sonzee and all of her needs, and not having any time (or really desire) to get anything done.

I can't seem to grasp how the world is moving on at a regular pace, yet I feel like I am living in slow motion.  I can't seem to grasp that she isn't here, yet there are constant reminders of her absence.  Sometimes it almost feels like she was just a figment of my imagination, was she really even here?  How was it for almost 5 years?  Why did those 5 years seem regularly paced with the speed of life in general, but now time without her from the outside of my bubble feels like it is speeding by, but from where I stand I am the turtle just considering starting the race?

One of the books I am reading has a subtitle about "surviving the loss of a child".  The word surviving jumped out at me this morning as it is sitting next to me on the desk.  That is essentially what I feel like I am doing.  I am just surviving.  There is nothing fancier than that going on over here.  I am merely existing.  I go through the motions of life and smack the smile on my face but to slightly alter my own quote from our fundraising video in 2017, it is extremely devastating to have had an almost 5-year-old little girl and see all of these milestones that she won't be able to do, and we are supposed to just pick back up and carry on with life.

The Mighty Contributor

Friday, February 14, 2020

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 22 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 22 days to even consider it.


The Mighty Contributor

Wednesday, February 12, 2020

Sonzee turns five

Dear Sonzee,

I am sorry I am a day late writing you a letter, but yesterday, on what should have been your fifth birthday was a really really "horrible, no good very bad day."  I wish there was a word in the English language to describe what I am feeling, but as of this moment, there is nothing sufficient.  I am still extremely elated that you are no longer suffering.  That is honestly the main focus I have when the times are really tough, just a quick reminder that you are not in pain, not seizing, and not locked inside your body, and the panic of you gone melts away.  As a consolation, all those years aba and I said we wish we could take away your pain and suffering and have it be us who feels it, well that is about where we are, and honestly, it makes us proud to be the ones to do that for you, but it puts the experience of your pain and suffering on an entirely different level, I am still so sorry for you having to go through it all.

I hope you were able to see we decorated your grave.  I placed Mayzie's pinwheel from her celebration of life by your name plaque, it brightens up the entire cemetery, well that and the giant red "5" balloon that I attached to the garden flag pole.  I originally wanted a new birthday burlap flag for you, but Amazon had a fail, and despite the two nice gentlemen at Amazon who heard all about the need to decorate your grave, they couldn't figure out where in Phoenix the package was, so, in the end, I brought you the house cupcake burlap and hung it, which honestly worked out for the best.

The rabbi told me after your funeral that your soul would linger in the house for a bit and then slowly leave by the end of shiva.  I originally asked him if I would be able to notice and if it would make me feel better, he couldn't answer that, thankfully having no experience in this specific department, however, I can now.  I continued to sleep in your bed after you were no longer here, I cannot explain why, but that is where I went every night.  I swear I felt you hovering over the bed the first couple of nights, which by the way, (didn't we discuss ema has a thing about that).  By Sunday night I wasn't being physically pulled to your room, and Aba and I got up to walk around the block on Monday.  I slept in your bed on Monday night, but last night for the first time in 3 weeks, I didn't feel the need.  I take it as a sign that you are moving through whatever the process really is, and I am thankful I have not held you back.

Noam sang happy birthday specifically to you in the car yesterday on his own, unprompted after we were about 1/2 way home from the cemetery.  I was able to catch it on video and it was so sweet.  He knows you aren't here, so while he takes every opportunity to find you in pictures and talk about you he hasn't run into your room searching for you.  I am a bit relieved about that honestly.  Your older siblings are working through it all similarly to aba and I, not really sure how to process it all, feeling your absence, but so happy you aren't suffering.  Laeya wanted to know if eating the ice cream made you wonder why you took so long to go to Gan Eden in the first place.  Don't worry, we are not giving Meena your bedroom no matter how much she has begged, and she does miss you.  Eventually, I have a great plan for your room so we all will have a space to come be with you, and we are probably going to keep your Rifton chair so you can continue to be an awesome goalie for Tzviki.

 I have been going through videos and pictures of your life to create a video for your celebration that we have in about 3 weeks, that process has brought such a smile on my face seeing how smiley and happy you were during your first year and a half.  I have to really sit down and figure out the specifics of the event to make sure we do it justice for you.  I am channeling my inner Sonzee bear strength minute by minute and I thank you for sharing some with me.  I hope you are settling into your new home well and that you are having the time of your life.  So many people reached out to me yesterday and wished you a happy birthday.  We have received so many notifications of donations being made in your honor, gifts, "thank you's" for bringing awareness and sharing your story, and Mimi and Miki even planted a huge avocado tree in their yard in your honor.  I honestly do not know how to properly thank everyone for all of their love and support, and I hope you feel the love wherever you are.

I hope your birthday was as spectacular as I imagined it to be for you.  I hope someone takes it as seriously as I do and you didn't feel like you were missing out.  We did have cupcakes and cake in your honor as we would have if you were here.  We miss you every second of every day and please feel free to send me signs you are doing ok (just please don't hover over the bed like your siblings do in the middle of the night).

With love always,
Ema


The Mighty Contributor

Monday, February 10, 2020

To Be Continued...

I started making Shutterfly albums in 2008 after Sam's and my honeymoon.  It was the first company I was told of at the time that allowed me to not have to go to the store to get physical prints of the pictures in order to make a scrapbook.  Since I love to document as many of life's events as possible, having a way to create an album from the comfort of my home was fantastic.  After our honeymoon, I continued to use Shutterfly for all of my picture needs.  My intention has been to document as much of our children's lives as possible so when they grow up and move out, they will have these books to remind them of their childhood.  Since each album to me is just a snapshot of a moment in our life waiting for the next album to pick up where the previous one left off, on the back cover of every album I place a picture with the words, "To Be Continued".

While the series of Sonzee's books will have far fewer volumes filled with pictures of her life here with us, there is no way that her story has been spoken for the last time.  There is no way that her impact here on this world in a physical manner has come to an end.  I know that her physical presence is no longer needed here with us for her purpose to be known, but I know that in her short time, she merely planted a seed for whatever her purpose was to be cultivated without her having to struggle alongside. 

As it was pointed out during her funeral in a quote by Terry Pratchet,  "No one is actually dead until the ripples they cause die away", and I realize I do not even know the depths to which Sonya's Story has sent ripples.  For a little girl who never spoke a word she has shared quite an amazing story.  She has positively impacted and inspired so many, that my level of pride and joy has jumped off the charts.  I really hope wherever she is she is able to see how many people love her, miss her, and are forever changed because of her, and because I know she has more to say, just as every one of my albums ends, this one will also include, "To Be Continued".





Saturday, February 8, 2020

Part 2: Window

From the moment Sonzee passed I felt a sense of calmness, an immediate peace.  It is a huge relief to know she is no longer suffering, to know she is no longer going to be in pain, to know she is no longer going to be trapped in her body, to know she is free.  That peace and calmness are due to my faith, it is due to the belief that being in heaven (Gan Eden) means she is free from her earthly challenges and limitations, but to be honest, there is a part of me that lacks some confidence in that belief.  There is a part of me that needs to see some proof, there is a part of me that is wondering what exactly she is doing and wonders if she really is ok.

I wish I knew who was there to greet her when she left us last Monday.  I wish I knew who was holding her hand and giving her a tour.  I wish I knew if she was able to check in on us, to see that we are missing her, but hearing us say how grateful we all are that she is no longer suffering.  I wish I knew if she was making new friends and if she was able to meet up with her friends who passed before her.  I wish I knew if she was missing us and scared and who was there to comfort her on her tough days.  I wish I knew who was playing the role of her ema and if they are enough to help her adjust.

Today I spent a large portion of the day curled up in her bed, thinking about how I am going to decorate her grave on Monday for her birthday on Tuesday.  I let the events of the last 3 weeks playout in my mind, reliving every moment, analyzing our decisions, and wondering if there was any way we could have changed the outcome.  I know deep down unless we had a crystal ball last August we never had a chance of changing the course.  I also know even if we had that ball, all that would have done is let us know our time with her was nearing its end, and to be honest, I felt it in my soul anyway.  I know we did our best, I know her body never stood a chance and I know she has to be better off anywhere but here.  But I wish I could sneak a peak in through a tiny window for just 10 seconds to see if she was floating in a pool eating an ice cream sundae or running around with some friends, or sitting in a swing feeling the breeze hit her face...just so my heart could maybe be in the same book as my brain.


The Mighty Contributor