Friday, February 28, 2020


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


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, 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,

The Mighty Contributor

Tuesday, February 18, 2020


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