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

Sunday, May 31, 2020

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.

The Mighty Contributor

Thursday, May 28, 2020

Change

Three days are remaining in May.  I really dislike this month in general because it has always been the month of her 28-day hospital stay.  The number of consecutive days never did get trumped, but there were a few close seconds.  The month of May did have its perks, like the fact that for some reason the last week of the month would start her on some sort of seizure vacation until around the beginning of July.  Sometimes she would go close to the entire month span without a large seizure and only have her millisecond drops or spasms, sometimes it would be days.  Whatever it was, we never had a reason, it is just what happened year after year from 2015-2019, every single end of May.  I hope wherever she is that she has been enjoying seizure freedom for the last 16 weeks 2 days and 21 hours, if not I will have a lot to take up with the upper management.

On Monday it becomes June, another new month to start without her here.  It also happens to fall on what will be another new week without her here.  In 6 days it will be a complete 4 months without her here.  I cannot comprehend how summer is already here.  I really feel like I closed my eyes and it all happened in a blink, but yet it feels like the longest close to 4 months ever that I wish I could have actually slept through. 

Every day since February 3 has brought something new.  Supposedly the first year is the worst because of all the "firsts" you get to experience in a new way, but forget any of the special days, every day for the rest of my life is going to be something new I have to figure out without her here.  I dislike all that comes with that little fact.  Even in the crazy world of CDKL5 and Sonzee, we had a norm, we had a routine, and we had inconsistent consistency.  There was comfort and familiarity in the inconsistent consistency and we even relied on it, or at least I did.  I still feel so lost without her and the chaos as my guide, and I really really dislike all of this change.


The Mighty Contributor