Monday, June 29, 2020

21 Weeks

My Dearest Sonzee Bear,

How are you doing my love?  Another week has gone by and by the time of my next letter to you, another month as well.  The months passing hurt more than the individual weeks.  Maybe it is because that means 4ish of them have come and gone without you being here?  Maybe it is because seeing a new month makes it in my face more real that you are gone?  Each week I can feel myself believe that simple yet obvious fact a little more.  By little, I mean nonmeasurable to the naked eye, but internally I know it has occurred.

I found myself watching two different movies this week at night after the house was asleep, both around the concept of grief.  I am not sure why I considered it to be the best of ideas, but in the end, besides finding myself hysterically crying at 1:30am on the couch, I think I needed to watch them?  I am not sure I am as strong as the characters, but the messages resonated and I have been playing them in my mind on a loop. 

I feel like I am stuck in this space of trying to move forward without you, while not feeling this suffocating guilt and feeling that that would mean I am leaving you behind.  At the same time, I actually wonder if my being stuck is preventing you from being able to move forward yourself?  I truly want your soul to be able to do what it needs to do now without it being me who holds you back.  There were no clear cut answers when you were here, and there are certainly less with you gone.

Wednesday will represent the second July 1 since the summer of 2014 that we will not be in NY.  The first was the year you were born because we were so afraid of being in the middle of nowhere so soon after your epilepsy diagnosis and now the first summer after your death.  In a sense that almost seems fitting, but the reason for not going this year was made more by forces greater than our control vs our desires.  Although to be 100% honest I am not sure I am ready to be that far away from you for so long just yet, so maybe you played a roll in the way this summer is playing out?

For the first time I am doing ESY at FBC this summer (over zoom) and we begin officially on Tuesday.  I am overall excited, but a little nervous because instead of tagging onto circle times like how it was during spring, this is me being front and center with each kiddo.  I am sure by next week I will feel better about it.  Whether fall classes will be online or in-person have yet to be determined at this point, and I am unsure where my opinion lies.  For different reasons than everyone else my biggest fear for returning to the main campus is whether I can actually walk into the building and walk down your hallway and walk into any classroom you have ever been in or the room has shared a bathroom entry with.  I honestly don't know how in person would work at west valley either because I am afraid the reminders of it all staring me in the face and surrounding my day might cause me to break down multiple times a day.   For now, I will just focus on taking each virtual ESY day as they come and just wait and see the options we are given for the fall and how I am feeling when a decision needs to be made.

As always, I hope you are staying safe and healthy.  I hope you are having the most fun possible and that you aren't missing us all too much.  I hope you feel safe and comforted and that you know how much you are loved and missed.

Love always,
Ema

The Mighty Contributor

Thursday, June 25, 2020

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 22 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.




The Mighty Contributor

Monday, June 22, 2020

20 Weeks

Dear Sonzee Bear,

20 weeks and (sadly) counting my little bear.  I feel like this should be some celebratory moment due to the amount of time, all I can think to celebrate is how I have actually survived this long without you here.  Maybe that isn't even entirely true because so much of me went with you all those Monday's so long ago.

Today was supposed to be our first day in New York.  I wonder how you would have handled the long flights to and from Israel.  My guess is you would have handled it like a champ, but I do wonder how we would have worked out all of the logistics to make it all possible.  One of those little mysteries we won't be privy to knowing.  I keep thinking about whenever it is that we are going to be flying without you...honestly, it's a first I am really not looking forward to participating in.  I already anticipate a minor breakdown in security.  That is one of those differences between when you were here and now, instead of anticipating all the possible scenarios of what people might say about you, or to us on your behalf, or the fears of stares and what people might be thinking about you, I anticipate what people might say that could cause me to react negatively or what might cause me to breakdown and in what manner and how I can possibly, maybe, handle it all.

This last week for some reason I have been a little more outspoken in general when people say or do something that really makes my skin crawl.  I think we can blame Harper's mommy because she told me I have 18 months from Feb. 3 to be societally excused over anything that comes out of my mouth.  So, I just decided to embrace it...oops?!  The truth is, I was barely hanging on to my sanity and my filter in general after everything we were thrown into living life with you, and now since you have left, I just don't have the wherewithal to deal with certain things anymore.  I think this is the reason that phrase sorry, not sorry was created.

Yesterday was Aba's day, we made the best of it for him.  Laeya made a craft in your honor for him and I placed it on your rocks for him when we went to visit you.  We took a picture with everyone, and sorry we stood on your feet, although you are so used to that.  Noam has been sleeping with the book of you two again and carrying it around.  Laeya and Meena have been dressing up their Sonzee Bears in various outfits when they play.  Everyone except for me went into your spa again yesterday.  I am sorry, I still can't, but they have been having so much fun. 

The jury is definitely out on that garden I started almost 6 weeks ago.  They are colorless but not drooping?  There is a reason I don't typically participate in this planting thing.  Aba said he is going to install a drip line thing so hopefully that will keep everything getting appropriate water and make it more of a chance of being a success.  The good news is that we have birds living in the cactus in the front yard as well as the trees in the back, and hummingbirds across the street all the time, so once your garden is established I feel like it will just be a bonus for them to come and visit.

Speaking of hummingbirds, we spent a large portion outside of the house Saturday afternoon until after Shabbat ended and there was a hummingbird that just wouldn't go into the tree.  I noticed it because it was just dancing back and forth across the street high above the large tree there and every once and a while it would fly over towards us and into the backyard.  I always take notice now when they are flying around, but this was different.  In the back of my mind, I hoped it was you just coming to be near us from a little bit of a distance.  (No, I am not calling you a hummingbird per se) But if it was you, thanks for the visit.

Anyway, as always, I miss you.  We all miss you and wish you were here.  Please remember to stay safe and remember we love you so much.

Love always,
Ema


The Mighty Contributor

Wednesday, June 17, 2020

CDKL5 Awareness 2020

It is after midnight on many of my friends' Facebook pages.  The June 17 CDKL5 awareness posts are starting to consume my newsfeed.  I read them and the tears fill my eyes.  We are all on different journies, yet the same path, and no matter what, it's a heartbreaking one at that.  What is there to say?  How do we really make others aware of the significant impact of one teensie tiny genetic error?  There is no one storming the streets demanding a cure, yet some of us wish we could storm the gates of heaven to see the children who were stolen from us.  There is no one who has found potential cures skipping every potential phase of a trial in order to speedily find a way for those children who are left here to not have to continue to live in silence, enduring thousands of seizures, and with significant developmental delays; yet many parents and family members attempt to make the world aware that something is needed by sharing their individual stories.

I honestly haven't figure out what it takes to get onto Ellen or make a big enough deal that anyone who is a someone will fight for our rare cause.  A cause that isn't reaching into the homes of every single person in this world due to any lack of trying.  I assure you every parent of a child diagnosed with CDKL5 Deficiency Disorder does their damnedest every day of their lives to try to eradicate the nasty impact of this disorder on their child.  It is literally a fight to the death type of attempt, the worst game of beat the clock, and yet sadly many best efforts are just that...efforts that ultimately come up short because sometimes your best just isn't enough.

We have been lucky to have been able to "celebrate" CDKL5 Awareness day for every single year of Sonzee's life and now the first of her death.  Ironically when she was a baby we were told by so many parents of diagnosed children how lucky we were to have a diagnosis at such a young age.  I never felt their extended joy on the topic, and thankfully those parents don't share the same pain we are living now without her.  While there is a sense of relief in having an answer as to why your child is seizing, why they are not making eye contact, why they are not meeting developmental milestones, why they are struggling with feeding issues, why they are unable to be fully functional members of society, there is absolutely not one ounce of luck that comes with having a CDKL5 diagnosis, no matter the age of diagnosis. 

I wish June 17 wasn't another day that is tainted forever.  I wish June 17 meant more to more people and that all of the awareness efforts were not in vain.  I wish that June 17, 2020 was the very last CDKL5 Deficiency Disorder awareness day that was needed to share with the world the devastating effects of a CDKL5 mutation.  And for now, we are left to making Facebook posts that hopefully people share and to dressing in lime green, with the knowledge that some of us don't even have our children to do that anymore.


The Mighty Contributor

Tuesday, June 16, 2020

Unanticipated

I spent a significant amount of time in her room between Friday night and Saturday morning.  Her biggest sister and I were having some quality bonding time and it was a good location for us.  I stared at her walls for what felt like an eternity.  All of her handprints, footprints, pictures that I printed from school and placed into frames, participation certificates, the giant picture we had made for her funeral, it was all there staring me in the face.  I tried to not think, I tried to actively turn the switch to off, but it didn't matter what I did, the tears began to fall.  I repeated in my mind words that have been said to me over a million times, "it's ok to cry in front of your kids" and "it's good for them to see you cry", but oh how quickly my oldest noticed.

"Ema, are you crying?"  I replied with a shake of my head and my hand reaching up to wipe the tears.  She replied with "It's okay Ema, we all do it".  "Meena cried at Auntie A's the first time she slept over after Sonzee died".  She continued to tell me how she and her sister talk about how much they miss Sonzee, which brought me a lot of peace and comfort because I always worry if they keep their feelings bottled up...like me.  I extremely dislike crying in front of others, regardless of our relationship, it makes me feel extremely weak.  Apparently, there is still more to Sonzee's mission because she's still working her magic by enhancing my skillsets from afar.  Ema is now unable to control her ability to stop the flow of tears (check).

Staring at all of her life framed on walls is a double-edged sword.  It proves she existed, it proves it wasn't all just a dream, and it proves she was alive.  Yet, she isn't here anymore, and it makes me wonder, where did she go? what is she doing? who is she with?  Does she look the same?  I can't look at her past without wondering about her present or future and I need to be willing to accept all the feelings merging together at once without warning; which is proving to be a newly unanticipated challenge


The Mighty Contributor

Monday, June 15, 2020

19 weeks

Dear Sonzee, 

19 weeks my love.  I am unsure how the days keep speeding by and turn into weeks since you were last here.  We are halfway through June now and father's day is upon us in 6 days.  I won't brag, but I did something really comical for aba's gift, don't worry, you are part of it.  Hard to believe another significant day is about to be here and you won't be.  We are still not used to that, in fact, some days I think that fact has only gotten worse, but maybe after all of these firsts are behind us things will be better?  I am unsure if that will be the case because we will always know you aren't making a surprise appearance, yet it will always be disappointing when you don't, and then we will have to just continue to make the best of the day despite that.

In 3 days is CDKL5 Awareness day.  I have hardly been raising awareness since you have left us, and definitely not so much during this years June awareness month.  Short of posting your death certificate each day, I have little I feel like sharing right now.  I feel slightly guilty about that.  I keep thinking of various ways I could have raised awareness this month in your honor, but I will have plenty of years to do it.  Maybe next year I will be in a better mental state regarding my feelings towards everything.  It is so hard to literally hate the lack of something that made you who you were.  I used to tell myself while you were alive that I didn't hate your lack of CDKL5 because it did make you the you we loved, but it's hard to not hate the very thing that aided in your no longer being here to kiss and hug.

I am unsure when I started to post a video or a picture of you each day from a previous year, but I am really loving the trip down memory lane every day.  Each picture takes me back to that specific moment in time and I can actually remember the moments.  Sometimes though they make me wonder if we did too little?  I sometimes wonder if I was so tired I didn't give you my all?  I won't ever know that answer, but lately, it has been weighing on me.  I know deep down that everything happened how it was supposed to, it is just hard to accept it all the time.  This time last year we really thought you were perfect, at your very best.  Hindsight is always 20/20 and I typically end up disliking it.

Aba has been placing way too many rocks by you, so I have started back at decorating them.  Your basket is literally overflowing.  He tells me to just keep coloring them, yet I keep explaining that we have years of rock placing.  I colored one already for July 4th because I am running out of ideas.  Morah Zupnick gave me a great idea to color one for Covid19 (I am so glad you are missing out on this one).  

I hope as usual this week treats you well and you know you are extremely loved and missed.  I hope you are making friends and are not lonely at all.  Remember to stay safe!

Love always, 
Ema


The Mighty Contributor

Friday, June 12, 2020

Shows

Watching television isn't really a big thing for me.  Every once and awhile there is a show Sam and I will watch together, and on occasions, I will find a show that I watch myself.  My typical rules are usually light and airy comedies or lately every DisneyNature episode on Disney+.  I decided yesterday maybe I should consider watching a new show, so, last night I ventured over to Netflix.

Sweet Magnolias showed up immediately as a recommendation and I figured, why not?  I pressed play, and season 1 began.  Somehow the episodes were flying by and I decided to look down at my phone notice I had missed some texts from my sister.  I saw the time and realized I had not yet taken a shower and after mentioning that to my sister I wrote the words "this takes me back to the days of Sonzee's hospitalizations"...and then I hit erase.  I put the phone down immediately and got up to go take the shower.

In May of 2016 during Sonzee's 28-day hospitalization I binge-watched the entire series of "Parenthood".  My favorite part besides cuddling next to Sonzee and figuring out ways to prop up the computer on either the food tray or my lap without annoying her was having to explain to every nurse or doctor who walked in I wasn't crying over Sonzee, but rather the show.  Eventually, my "hospital show" became This Is Us, I was all caught up by the end of her 22-day stay in December of 2018, but she never had another lengthy hospitalization to watch any of the episodes that came out after.  I have no intention of ever finishing that show. 

Sometimes I am proud of myself for not being aware of certain obvious situations for a little because, eventually, it becomes obviously apparent and it's too late to hit the breaks before the inevitable crash takes place.  I found myself unable to stop the hysterical sobs that accompanied me into the shower, it's almost too much to handle at times.  The traditions that were created out of less ideal situations became my comfort, they became my norm, they were things that were just for her and I.   So I will tell myself that she is sitting here with me as I watch a show that 150% would have become one of our "hospital shows" to watch together, but there is no way now that it will be without a box of tissues, and this time, the tears will be over Sonzee.


The Mighty Contributor

Tuesday, June 9, 2020

18 weeks and 1 day

Dear Sonzee,

Today marks 18 weeks and 1 day since you were last here.  This past Friday we donated your PPod chair and all of the accessories to one of your friends.  I felt the family wasn't exactly sold on its overall benefits, but I know the amazingness of that chair, so I figured in time they would come around.  I did message a mutual acquaintance to let them know that I donated the chair and to just check in with the receiving party to make sure all was well.  Then I read a message on Facebook that the chair is now fully embraced and loved.  Despite not being worried that this would be the ultimate verdict, my heart needed to know this was indeed the fact and so now I feel more at peace. 

In case you forgot, that chair was huge, and between the chair on its frame that was sitting in the corner, and the accessories aba and I shoved under our bed, our room feels like we just gained about 200square feet.  I will admit I finally put away the oxygen concentrator, your two nebulizers, the pulse oximeter, your Tobii eye gaze, and the remaining items of yours that we are keeping.  All that is left on the floor of yours now is the suction machine I haven't decided on keeping or giving away, a binder from FBC that needs to find a new home for a child who has a visual impairment, my hospital backpack that I cannot bring myself to unpack, the large floor mount for the Tobii, and the special tomato chair that we would like to sell.

Bubbie went with me yesterday to visit you.  I took her on a little stroll around the cemetery showing her the headstone we settled on, the color, and the other items.  We combined ideas originally from walking around, so it was the easiest way to explain it all.  The weather was actually really beautiful, just really windy so I was thankful I was wearing a mask because the sand was blowing all over the place.  She took home a rock to decorate for you as did I because I am behind on documenting some things.

Your older siblings have been taking advantage of the wind and have been flying kites in the front yard.  As I was watching them I could picture you sitting in your Rifton on the driveway with nurse Paige or myself holding the string and you flying your very own kite.  Since that isn't possible I switched my thinking to you were flying around with their kites.  I am pretty sure it isn't too far from the truth because after failing for a complete day to get Laeya's kite to fly it actually did for a significant amount of time yesterday, so thanks for the boost.  She was so excited.  She had been feeling really down about it on Sunday.

We have been continuing the tradition of going back to the carwash regularly.  Noam is constantly saying "tarwash? Sunday, Dondee" He knows that is what needs to happen on Sunday.  We haven't cleaned the inside at the carwash since quarantine started, and I tell myself every time that I will come home and do that part, but I have completely slacked.  The outside of both cars look very nice, but the insides are essentially a lost cause.  I did place 2 garbage cans...but it isn't really doing the trick for the handprints all over the glass. Maybe this weekend?

Sadly, we received the final word that camp has been canceled for Laeya and Tzvi, and so with a family vote, we came to the decision that New York was just not in our best interest for this summer.  I have taken some time to process this as it seems this entire year has been full of far too much change for me to grasp.  I think I am the one most upset about not going, but I do know it is for the best.  I just want to go back to you being here and us doing a redo for the challenging turn out of last summer when you spent the entire time sick and traveling all over NY to various hospitals.  In the deep recesses of my soul I know I wasn't really in the best mental place to be going to NY, but I felt like I needed to do it to try and help myself move...not on, but in some direction.  Clearly, that is not what is meant to be, and so until summer 2021, we will be missing our vacation village family and all the first memories your oldest sister and brother were going to make at sleep away camp.

This whole entire year has been one huge horrible excuse for a year.  I am at a point now where I find that I should just continue to be beaten while I am down, so I hope all of the "worsts" happen during 2020 so we can at least deal with all the low blows all at once.  It seems to be working out that way regardless, so what're another 6.5 months of potentially added "let's try to make this a positive" situation? 

I hope wherever you are that you are having a fantastic time and not having to deal with any of the challenges that life presents us with down here.  I hope you get to sit on a light post and just take in the beautiful sights and only experience the joyous parts of everything that I can only even begin to imagine.  As always, stay safe and don't forget I miss you, as do so many many people, and we love you and we hope you are doing well.

Love always,
Ema

The Mighty Contributor

Friday, June 5, 2020

Life goes on?

It’s been 2 days past the 4 months mark since she’s been gone.  Her large red ppod has remained on its frame in our master bedroom.  The toy bar and tray table have been collecting dust resting under our bed.  Earlier this week Sam decided that he wanted someone specifically to have her chair.  We originally were going to donate it to her school for multiple children to use during the day, but he decided that wasn’t doing the chair justice, or maybe her memory? I am unsure exactly, but I know for me as long as someone has her chair, I am okay with that.  I knew whom to reach out to about the chair and in a little bit today she will be on her way over to the house.  I took a final picture of it in our room just in the case it’s gone by the time I come home from visiting Sonzee, which is where I am currently at.

This morning her big siblings had their end of the year school count down and official start of summer ceremony on zoom.  I don’t know why it took the ceremony for me to process that this coming year is our oldest’s last year of elementary school.  Her brother follows behind her entering into 4th and then our 3rd is entering into 2nd.  Sonzee would have entered into Kindergarten and in two different lives I have a good idea of who her teachers would have been and it makes me cry.  It all makes me cry.  Life makes me cry.  I can’t seem to not cry. The days are turning into months which turn into years and they are going to continue to move quickly, without her here, without her moving past the 2nd week of her 2nd semester of her last year of preschool.  Gosh this is hard.  Her brother in 3 more years will be beyond where she ever got to be, and that’s not really even true because where he is at currently developmentally is far beyond where she ever was.  Sometimes I don’t know what I mourn more.

I sit here now, (by her? With her? Near hear?), glancing at a pile of various rocks, some that indicate events and milestones that are just representations of the life she is missing.  Everything she misses now becomes a rock placed by her to acknowledge what she should be doing or have done. I wish so much that things were different despite knowing what that would even mean for her or for our family. I can’t imagine a worse fate than where we currently are, so I think it’s a safe wish? But would that have meant never having her? I can’t really imagine that, but sometimes it feels like it was all just a quick dream.  Pictures represent life before she was here and pictures now represent life without her and in the middle was a life that was full of struggles and what felt like days and moments that would never end...but they eventually did and now all we have are the memories and this insane love that makes a wish for anything different seem almost wrong?

The Mighty Contributor

Wednesday, June 3, 2020

4 months


Dear Sonzee,

It's hard to believe it really has been a full 4 months since you were last here in my arms.  It's so strange to me because I can still close my eyes and feel your weight in them and your face tucked under my chin.  I wonder as the time goes on if I will eventually forget what that felt like?  I guess that is eventually something I will at least start to fear, but for now thankfully neither has occurred. Aba misses biting your cheeks, although I am unsure if you are missing that yourself.  Your poor cheeks were always so red after he did that, it would take me two seconds of seeing you to get angry at him.  He always said they were so yummy he couldn't help himself, but sheesh.

Your ppod chair has safely arrived at Andrew's, and he has been loving it.  His parents are so grateful because he is now much safer because it is bigger than the smaller one he was in.  His mom messaged me yesterday to tell me they found your bracelet tucked inside the fabric.  It was the one with the "s" engraved held together with red string.  I had forgotten about it, but I do remember when we lost it.  The funny thing is that I am pretty sure we lost it back in Phoenix before we even went to NY, which means that it made it through a couple of washes and traveling.  His mom said she felt a positive energy when she found it, and I have been thinking about it all night, and I think it should stay with them because that is clearly where it is meant to be. 

Yesterday Aba and I went on a quick day trip to take care of some business.  We began talking to someone and without thinking, I said "we have four children".  My heart sank at how fast the words came out.  I quickly thought to our recent grief support group where we discussed that I don't have to tell every person about our life, it isn't everyone's business to know the intricate details, and apparently, my subconscious felt it wasn't in my best interest, but I cried myself to sleep because of it.  I am so sorry.

Tzviki made your monthly milestone rock for today.  It came out really nicely and I am going to head over this afternoon to place it by you.  I am envisioning how all the rocks will look come the fall when your stone and items are all placed in the area.  We are just waiting for the proofs to come back, which should be sometime within this month and then whenever the stone arrives it will be engraved and placed shortly after.  The tentative time frame is sometime around the beginning of fall for it all to be completed.

I hope you are doing something fun to celebrate your 4 months in Gan Eden!  Continue to know that you are extremely loved and missed here.  As always, stay safe!

Love always,
Ema 


The Mighty Contributor

Monday, June 1, 2020

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

The Mighty Contributor