Tuesday, August 11, 2020

Sway Fun


Sway Fun-Inclusive playground activity

Since we have closed on Bear Pines we have been in Flagstaff more than Phoenix.  I mean when you compare 118-degree highs to 85 it really isn't that difficult to make the choice.  Despite my working virtually, the kids do not go back to school for at least another 10 days, so it has been nice to have a change of scenery.  We typically stay in the neighborhood where the house is, they have a small park and some wildlife areas, but the kids beg us to go to a park about 18 minutes away because it has a skateboard area with ramps as well as a huge climbing structure and zip line swings.  We have obliged twice.  The first time I hung with Sonzee's little brother in the little kid play area, he tends to just climb up and down steps 1000 times and never slide down the actual slide.  The second time, we all went to the area that had the "fun" activities, and the little man managed to still find a smaller slide with 5 steps to continue his routine (it should be noted he FINALLY slid down).  It was within 1 minute of stepping onto the mulch that this "sway fun" came into view.

My initial reaction was to be excited, I mean it isn't very often that a park has anything that can even be confused with maybe being "accessible" and here this was staring me in the face.  I also noted that one of the ziplines was a seat with a top harness bar contraption, so that too could house a differently-abled child (but not Sonzee).  Noting the ramp, I immediately said, "oh wow, something for Sonzee".  The kids ran up to it and I actually told them to get off because it wasn't meant for them, it was meant for Sonzee or a child who was in a wheelchair.  I don't know why, but something about them being on it when she wasn't there to be with them made me say it.  I could envision her and I just chilling in there while her siblings ran all around, in fact just staring at it I could see her bright pink wheelchair facing out to ensure her view wouldn't be blocked by the structure itself.  I could see her sitting with her leg crossed over and her playing with her hands and pushing her pacifier out of her mouth, but then reality snapped me back.

She isn't here, and if she were, we wouldn't be in Flagstaff, none of this would be happening, and so it seems I am just left with a dream. A dream where it all could be possible, whatever that even means.  Instead, I sat at the park with my two boys and two girls and to any of the other families sitting around on their chairs smiling at Sam racing the kids we were just a perfect family out at the park.  Maybe they even wondered or thought about how we must have waited between our middle daughter and having our youngest son because clearly there is different age gap than with the older kids.  They have no idea there is and always will be a missing piece to the perceived perfection.  They have no idea that me not being able to take my eyes off of the Sway Fun had nothing to do with them sitting inside it, but rather the little girl who wasn't.

The Mighty Contributor

Monday, August 10, 2020

26 weeks

Dear Sonzee, 

Hi baby girl!  It's been another week since we were together.  As time seems to get further away, the length between my weekly posts is also starting to feel like forever, yet the same 7 days go by.  I am sitting on the porch at Bear Pines drinking my coffee attempting to warm up.  It is a little contradictory considering it's in the 60s and I chose to sit outside to warm up, I get that, but it's relatively quiet out here and there is a family of hummingbirds that fly between our house and the neighbors and I am hoping to see them. Yesterday one went right up to your wind chime.  I am considering joining the ranks of the natives here and putting up some bird feeders and whatnot, but the bugs, eek.  Speaking of that, I have gotten less afraid of the small spiders and can deal with the moths, albeit their annoyance, but last night before bed a not so little spider decided to just galavant across the carpet upstairs, we both froze, I called for aba, and naturally, he had to go.  We have a very clear understanding that if they stay outside the house they can live a very fulfilling life, but if they enter into mine...well let's be honest, I am not going to assist them on their earthly mission. 

Today begins the official first day of me providing teletherapy for the school year.  I am excited but definitely nervous.  It's all-new teachers for me to get to know and half of my caseload is also different.  I suppose that isn't completely different from if we were in person, but virtual adds a different set of nerves for me.  I am sure in a few weeks things will settle down and the schedule won't feel as chaotic and things will come together.  Right now I just feel overwhelmed with it all.  Charlotte's mommy asked me yesterday about how it was going and I gave her the thumbs up drowning gif and said "similar to living life with CDKL5".

Yesterday we went to the park and there was an area that should've been for you.  I am going to need to write a separate post about it when time permits, but the whole experience was surreal.  Pretty much sums up life without you here in general I guess.  

Meena and Tzviki painted you some new rocks before we headed back up here, I didn't bring them to you before we left because I had brought you some others, so just know there are more coming your way.  

I am sorry this is short, I will be back. I hope you are continuing to be at peace, and know we love and miss you.

Love always,
Ema

The Mighty Contributor

Monday, August 3, 2020

6 months

Oh my little bear, 

This post seems just as difficult to write as it was to speak at your funeral, something I did with two of my best friends holding me on each side, 6 months ago tomorrow.  Today is hard.  Today marks half of a year without you being sassy, kicking your brother, or hanging out with your siblings.  Today marks 6 months that you haven't been in any pictures or cuddled by aba, myself, or nurse Paige.  Today marks 182 days since I last saw you. Today marks 26 weeks since I gave you your last kiss and placed you on a gurney that was loaded into the back of a car and couldn't even watch leave the driveway.  I wish I could say that today marks something other than another first in life without you here, but that is not the case.

The last 6 months have been filled with so much missing you I am not even sure you could fully comprehend it.  At the same time, it has been filled with so many moments of happiness that you are no longer suffering here.  I am close to 100% sure that you have been in a far better place over the last 182 days. Something I am reminded of when I see your CDKL5 siblings in hospitals, sick, or recovering from seizures.  I do not miss you having to endure any of that.  I do not feel at all sad that your past 26 weeks have been spent in complete peace.  It has been 26 weeks without sticking you with a needle, your first 6 months ever without one single seizure, and 182 days with not one ounce of pain.  However, I would be lying if I didn't tell you that I have spent close the entire last 6 months wishing that you were here as a healthy, not ever having a mutated CDKL5 gene, Sonzee.

Since today marks your first 6 months in Gan Eden, besides the standard glow rock to be placed by your grave, there will be a new tradition of placing a soapstone character every 6 months, and today's, of course, is a bear.  Today also marks what would have been your first day of Kindergarten, and in addition to a painted rock, Auntie A made you your back to school sign that says "First Day of Kindergarten in Gan Eden".  I hope you are wearing a cute outfit and someone does your hair as cute as nurse Paige would have.

These last 6 months have been filled with such bittersweetness that I know will continue for the rest of my life.  We have done so many things in your honor since you've been gone because that is all we are left with, but yet we wouldn't trade your peace for our comfort for even a second.  We won't ever be at peace with that fact that you aren't here with us in a broad sense, but there is no way we would ever have you come back, even for a day, to have to endure what you did.  My heart will continue to be shattered until we meet again, but I have faith that you have spent the last 4676 hours making up for your 4 years 11 months and 22 days, and for that, may you have an eternity more. 

Love always, 
Ema


The Mighty Contributor

Friday, July 31, 2020

Difficult roads...

Dear Sonzee, 

Another 31 days is wrapping up meaning another month is coming to an end.  This one, in particular, was our most eventful since you left us. We finally closed on the house 9 days ago, Bear Pines is slowly coming together.  The most incredible part is seeing my vision become reality.  Aba and I joked last night this is a place we would love to airbnb, and we hope all who visit here will feel the same way.  I added touches inspired by you all throughout.  Currently, I am upstairs on the outside porch writing this letter while sitting at a bistro set placed on top of a rug that is beige with a red design all over it, and drinking my coffee from the ceramic cup that has the red ring around the top.  They are honestly pretty crummy substitutes for you, but since they are the best I get, they are absolutely perfect.

This past week finished off multiple meetings for the new school year at FBC.  I am going back to West Valley for the 3rd year and took the two classrooms at East Valley.  The decision was made for me to not go back into central, and it was the correct one confirmed the second I looked at classroom assignments and didn't realize I was holding my breath until I saw Ms. Susan and Ms. Erin in the classrooms that were once mine.  I know I will miss seeing the faces of everyone who works on that campus, but I don't think I could walk the same halls you once did in your gait trainer, or have the constant reminder of your absence seeing the classroom you most probably would have been in.  I know the staff misses you greatly, they check in with me often and have made that very clear.  They always have been the best.

Yesterday we saw the initial mockup of your headstone, it turned out beautiful, but needs a couple of small fixes.  I am excited to see the final draft and then one day in the next few months it'll just show up.  I anticipate that day will be filled with mixed emotions.  Tomorrow begins a new month that will present us with some firsts. On Monday it is going to be a double whammy as it would have been your first day of school, Kindergarten no less, and it also marks 6 months since you have been gone.  Tuesday I am slated to do a live zoom as a Chabad FSU alumnus about your story, and I am really nervous about that.  

While today marks the final day of another month of 2020 you missed out on, it was also filled with new beginnings.  It breaks my heart that you aren't here to share them with us, but I know wherever you are, it is better for you.  So like this quote that now hangs in the coffee nook of Bear Pines says, 

Love always, 
Ema

The Mighty Contributor

Monday, July 27, 2020

25 Weeks

Dear Sonzee,

I simply cannot believe we are just one week away from you being gone for 6 full months.  It seems as if an entire lifetime has occurred during that time, one where you aren't physically present in but yet you somehow manage to fill all the space around me. 

During this last week, we finally closed and moved into Bear Pines.  We took a family picture on the front porch and we held your place with one of your Sonzee Bears.  It isn't the same, but at least there is a place holder.  The house is slowly coming together, but I feel like it will never be complete.  It took me two full days before we got the front porch set up perfectly with patio furniture, the new address sign, and your windchime.  I finally drank my first cup of coffee sitting outside on Saturday morning.  My heart misses you terribly, but when I am outside I just think of that quote from "A walk to remember"; "our love is like the wind, I can't see it, but I know it's there" and every time, I start to hear the rustling of the leaves in the tall trees and there is an extra gust of wind that surrounds me. 

This whole moving forward thing isn't getting any easier, but it is definitely getting different.  We celebrated Tzviki's birthday yesterday.  I made him a hockey cake and aba and I continued to build furniture and organize.  Your siblings spent the day both inside and outside.  Noam is roaming around like the king that he is, and getting bossier if you can even imagine that.  I want to do something special to honor your 6 months, and while talking to Auntie A today, she helped me figure it out, so now I just hope it gets delivered in time for me to bring it to you next week.

Today begins on-line meetings for the new school year at FBC.  My mind is still a mess about everything.  Right now it is scheduled to start virtually in a week, but if it changes to in-person in 3 weeks I cannot figure out if I would want to go in?  Your siblings' school has yet to determine their course of action either, and I am also torn on whether to send them.  Everyone likes to point out children dying from covid19 is rare, to which I reply that you were rare and statistically about .002%.  Someone has to be the statistic and you were one, so they really mean nothing to me.  I am really just hoping everything stays virtual, but that is selfish ema talking.

I hope you are continuing to play with your friends and make new ones and do whatever it is that you want.  Remember you are loved and missed greatly!  Stay healthy and be well.

Love always,
Ema

The Mighty Contributor