Miss her.

I miss her, but yesterday I saw at least 4 posts on my newsfeed that referenced a child recovering from a seizure.  My heart broke.  I don't miss the memories that those types of status updates bring flooding back into my mind.  I don't miss the pit in my stomach every day knowing with confidence that she was going to have multiple seizures during the day.  I don't miss knowing that there was nothing at all I could do to prevent them from occurring, and trust me, we tried just about every typical and outlandish option there was available.  But, gosh, do I miss her.

I don't miss the sleepless nights running into her room multiple times to try to offer her comfort when the seizures would attack her during her sleep.  I don't miss not being able to get into a deep sleep out of fear that I might miss her seizing and she would seize alone, or worse, suffocate or choke during one. I don't miss having to make sure all the sides of her bed were padded so she wouldn't break a bone when her limbs would flail outward during all the uncontrolled movements.  But, gosh, do I miss her.

I don't miss trying to "time" her morning seizures or play "beat the clock" so that swim or school wasn't a wasted attempt.  I don't miss trying to unload her from the car only to have to wait 20 minutes for her to finish seizing in a parking lot so we didn't harm her while taking her out.  I don't miss having to reschedule therapy multiple times a week because she seized right before her therapists walked into the house.  I don't miss that she sometimes spent 20 hours of her day either seizing or sleeping the seizure off.  But, gosh, do I miss her.

I don't miss that her little body isn't being subjected to multiple episodes of involuntary, uncontrollable movements that caused her to be in pain and at times fracture her bones.  I don't miss the amount of Motrin and Tylenol we had to give her due to the suspected headaches that her seizures would cause her.  I don't miss that I never ever have to witness her seizing ever again and I am beyond thankful I never have to write a post about her enduring or sleeping off another seizure ever again, but gosh, do I miss her.

Navigating

Dear Sonzee,

In a few more hours it will be 8 weeks since you were last here.  Didn't I just tell you it was 7?  I cannot believe Friday marks a full 2 months, it will also mark Ema's bestie Elle's birthday, so that will allow the clouds to part a bit.  The tears still fall at the drop of a hat, the pain still feels just as fresh, and the weight on my chest feels just as heavy.  Yesterday we had a really nice family day, the 6 of us, it almost feels wrong to admit that to you.  I promise though all I did was think about where you would have laid in the grass with your siblings, and how I would have made you go on the slip and slide with me; although you would have hated the cold water.  Noam would have sat with you since he refused to go on it because boss baby agrees with you on the water needing to be growing bacteria to get near it.  We all went into your swim spa to warm up, someone (yet of course none of your siblings will admit who) made it 91, don't worry, we adjusted that quickly back up to 94, we all know how you like it.

The last two times I have gone to see you there have been rocks painted and left for you.  I love the surprise, and even better is after I make a post the person sends me a text to let me know who it was.  I cannot tell you how much joy it all brings to my heart but it also hurts me to know others are having to miss you as well.  In case you don't know, missing you really hurts.  I don't wonder if it will ever feel better, I know that it would be impossible.  You have left quite a void for so many, I hope you realize how special you were, are, to a lot of people.  Meena slept in your room on Saturday night, Laeya Sunday, and Tzviki has requested tonight.  The only bit of guilt I feel in regards to him and your last few days is that he asked to sleep with you and I told him "not tonight" and then it never happened; he has reminded me of this at least two times since you left us.  I am so sorry if you are upset about that as well, I should have just let him, I don't know why I didn't; but tonight and whenever else he asks me to, he will be there.

I gave Auntie A all of your clothing, it wasn't that difficult because 95% was from your sisters, and it always goes to Ziva after you.  She has insisted on wearing the outfits practically every day, it makes me smile when she walks by the house in a familiar combo.  She and momo were talking about you the other day and Auntie A sent me the recording of the last part.  I know Ziva has been missing you a lot, and she was talking about you.  Mo said you will always hear them talking to you because you are in the sky and you were with Hashem.  Neither Auntie A nor I realized how much your absence would impact Z, so maybe if you could add her into your watch list if you haven't that would be so great.

Last week I took another picture at your grave and received a text from Coach Susan pointing out another heart crept it's way into it, this time the shadow was the heart.  I am starting to really think you are somehow doing this on purpose.  I think I am too afraid to admit that it really could be a sign from you, but after the third time, I promise I will stop doubting (hint, hint).  While we are on the subject, if you could just find a way to let me know you are doing okay, ema could really use the reassurance.  It has been really challenging to not be able to check-in, to not be able to call and have someone tell me you are doing well, to not know you are feeling ok, to not know you really are alright, to not know you have made friends, or that someone is taking care of you, or at least is there for you when you need it.

Navigating life with you feels similar to being dropped into the middle of a jungle in the fog with no compass.  I think the busy work of being back to writing progress reports, IEP's, and present levels has helped me keep my footing, but it is easy for me to falter when I see the dates of birth of the kiddos in my classes are younger than you or your age.  The days are starting to have more moments where the tears don't force me into hiding or make me turn away so no one catches the twinkle is there.  But then there are times where a simple thought brings a tidal wave right back at me. I know this is going to be an even slower marathon than living your journey with CDKL5, so I am learning to give myself grace.  I just hope and pray you are not having the same difficulties navigating your new world without us, and if you find yourself having one of those tough days just know it's allowed.  Remember that we miss you beyond words and to stay safe.

Love always,
Ema

Painting rocks

Over the last two days, I have spent 3 hours coloring rocks.  Saying that makes my eyes squint and my eyebrows furrow, coloring rocks?  I don't understand how 3 months ago I was measuring out medications and matching bows to her outfits and now I find myself sitting on a sidewalk with my legs stretched out onto a surface of rocks while my hand reaches for different acrylic markers to use to color large rocks that bring life to her place of death. 

There is typically the perfect breeze that meets me shortly after I arrive, or maybe it just takes me a little while to notice it is around me.  I wonder if there is a notification system that lets her know she has a visitor.  I sometimes wonder if the wind is a greeting from her letting me know she knows I am there.   I wonder if she has the option to sit with me while I am there, and if she has the option, I wonder if she does?  If she knows, I wonder if it brings her comfort that I visit as often as I do, or does she wish I wouldn't?  Funny how I still second guess my parenting of her, I guess some things just won't ever change.

The main thought that fills my mind while I color her rocks is, "how is this my reality?"  It is almost some horrible irony that after close to 5 years of my parenting of her requiring me a tremendous amount of thought to ensure she remained alive, my responsibility has now been diminished to a completely mindless activity such as coloring.  As if it is intended to be some trade-off or some reward, but instead it just feels like my own personal form of capital punishment.  I am not supposed to be sitting in a cemetery coloring large rocks because I don't like them being stuck in a basket.  I am not supposed to be repurposing a room that was specifically constructed solely for her.  I am not supposed to be thinking about how our quarantine would be looking right now had she been alive.  I am not supposed to be sitting in a cemetery because my four-year-old daughter died almost 2 months ago. 

Instead of even entertaining that time might help, I just feel like every day becomes harder.  Every day is another one that she wasn't here for.  Every day is another one that makes her actual loss that much further away.  Every day makes it the new longest since she has been here.  Every day just makes me miss her differently, miss her more, and miss her a new too much.  I don't wish we should go back to her enduring all she had to, but I do wish I could do more for her than just painting rocks.

7 weeks

Dear Sonzee,

It seems on my more difficult days writing you a note helps clear my mind.  Today has been tough.  It started with an online staff meeting at your school.  I have been unsure about going back to FBC this year, unsure if I was ready but wondering if I would ever really be ready, and not wanting to disappoint families or the teachers in my classrooms.  Schools have moved to an online virtual format due to the coronavirus pandemic, so I no longer have to worry about walking passed your classroom or going into a building that would possibly cause me an extra dose of grief.  I figured West Valley wouldn’t bother me as much since you never were there physically, so initially I thought I would just go back there, but now I am planning on going back to all four classrooms.  What I didn’t consider was that just getting back into the grove, being part of a community that was yours first would make me so emotional.  Let’s just say I was really happy it was a one way meeting and no one could see me.  All I was thinking about was how sassy you would be during the future virtual circle times and the avoidance you would do to not look at the screen.  I wonder what you would have thought about it.

I cleaned the filters in your swim spa this afternoon.  I am in operation make the water sparkling blue.  It has been quite the project for me.  Every  time I think I finally have it mastered, it becomes a bit cloudy and it’s driving me insane.  I ordered new filters  and before summer we will drain the water and refill it to start from scratch.  Overall I enjoy taking care of it, I just wish you would be swimming in it along with the rest of us.  I keep telling myself I should start to swim against the jets as a workout and put all of the features to good use, but you know how I feel about exercising so it still hasn’t happened yet.

We received another series of trees planted in your honor certificate today in the mail.  That brings the total up to five certificates and a ridiculous amount of trees.  This one came from Mr. Darrin and the entire cemetery family. That made me smile but brought tears to my eyes simultaneously, that seems to be the common theme today.  Last week we finally received coach Susan’s, it took her calling three times and 5 weeks for them to get it to us...neither of us understood why that was the case.  Aunt Ronit,  your CDKL5 brother Tanner’s family, and a huge group of my sorority sisters sent as well.  I’ll make sure I put the one from today up with the others on the wall.

The last part of your room is just framing some final items.  Aba has officially moved the corner desk inside and he’s been using it for the last few days.  It’s nice to be using your room daily again.  Laeya went in there over the weekend and played with her playmobile.  Noam is back to asking “up” when I am in there to get into your bed.  Meena tried to erase the dry erase marker with all of your last doses of medications given the weekend you passed away, Aba and I shouted “don’t touch” in unison, clearly we aren’t ready to remove the last bit of our care for you.  Your TPN lists are still up on the left door, and your last doctors appointment dates are listed as well.  They might end up being stained into the door.

Today marks 7 weeks since I last held you.  Still feels like it was yesterday, but I know so much time has passed without you.  So many new memories that don’t involve you physically, but don’t worry, you are there in all of our thoughts.  We miss you immensely and we can’t wait to see you again.  I am eager to hear about all you have been doing, so I hope you are keeping a detailed journal to review with me one day.  It’s been an hour since the gates closed here, and I am sure Aba is wondering when I’ll be back, so I am going to be on my way. Your  rocks are all in order and I’ll be back to sit with you tomorrow. Have a great night and be safe.

Love always,
Ema

Blankets

We are coming to the end of our first week at home.  There have been minimal time commitments leaving me a large amount of time to finish Sonzee's room.  This morning I was cleaning off the remaining items that have been thrown on her bed as the rest of her room is straightened up.  I am in search of one specific item I know I have hidden somewhere so I can frame it, but I have no idea where it has been placed for the last almost 5 years.  I went into her brother's closet which has been the main storage facility for many of the kids' items because it is the only walk-in closet in our house.  I reached for a large green Ikea bin sure that it was full of cards and papers related to Sonzee, but as soon as my eyes caught the contents I realized I was right about only one thing, it was a box for Sonzee.

Blankets.  I saved her blankets in this bin when she was no longer a baby.  After she turned three and started school I exchanged the blankets she would take out in public.  I essentially forgot about the blankets and that I put them in this box.  I have looked at so many baby pictures recently with these blankets and maybe one time did it even dawn on me I had not seen them in a while.  It clearly wasn't too much of a thought for me as I didn't go on a rampage to find them, but now, here they are unexpectedly in my face.  The baby blanket with her birth statistics that my sister made for her, ironically with lime green thread.  The Sonzee/Sonya bear blanket that an online Facebook shop sent to children who spent time in the hospital.  Her first NICU blankets.  The blanket the International Foundation for CDKL5 sent me when she was first diagnosed, which reminded me that it was also sent with the Raggy Ann doll that has been in her room that I couldn't remember who had given it to her. The small lovie blanket we grabbed from the volunteer cart during one of her PCH stays because it was red.  All of these blankets that were such a significant part of her early years and now they will be a significant part of my future.

I am still adjusting to how things continuously sneak up on me.  I am still caught off guard with these moments that feel like a fresh stab wound.  I am still shocked that it isn't until these types of moments that I realize I am blocking so many emotions.  I am still surprised at how much it hurts that she isn't here.  I am still overwhelmed by the thought that she won't ever be back with us here.  I am still having difficulty with the fact that I justify that losing her was better for her because of the struggling she did while she was alive.  I still don't understand how that makes sense.  I still cannot comprehend that she had to spend 4 years 11 months and 22 days locked inside her body only for her freedom to come by leaving earth.  But, besides all of that, what I find almost poetic is that baby blankets that were used for her comfort are the items that brought me to tears.