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

Another 30 days

My new least favorite days have become the last one of the current month and the tomorrow that follows.  It represents another month that is finishing without Sonzee being here with us and the new one that is beginning without her to ever be part of.  Today marks the end of the 2nd full month of 2020 that she was not part of.  Tomorrow marks the start of the 3rd month that she never got to see.  On Sunday it will mark 3 full months, 90 days, 1/4 of an entire year that she was not here.  Just typing the words suck all the air out of my lungs and fills me with an immense amount of suffocating weight.

It seems unfathomable that the world has continued to go on without her presence. It is almost impossible for me to grasp that the laws of life even allow parents to outlive a child, how can such a situation be allowed to occur?  How is it that I have woken up every single day since February 4 and she hasn't?  How is it that she has been somewhere else being taken care of by someone other than her parents, other than me, for yet again another 30 days?

Today marks the 30th day of April where there were was not one single picture of her taken.  Tomorrow will begin another month on the calendar that in the future won't be able to provide any throwbacks during the year 2020.  I wish the milestones that occurred after death could be celebratory instead of overshadowed with harsh realities.  I wish I could say that the closing out of April taught me something more than the knowledge that it is possible to continue to live without her.  I wish I could say that May will teach me something different, but it won't.  It will just be another 31 days of survival.

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.

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 23 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.

Part 2: Window

From the moment Sonzee passed I felt a sense of calmness, an immediate peace.  It is a huge relief to know she is no longer suffering, to know she is no longer going to be in pain, to know she is no longer going to be trapped in her body, to know she is free.  That peace and calmness are due to my faith, it is due to the belief that being in heaven (Gan Eden) means she is free from her earthly challenges and limitations, but to be honest, there is a part of me that lacks some confidence in that belief.  There is a part of me that needs to see some proof, there is a part of me that is wondering what exactly she is doing and wonders if she really is ok.

I wish I knew who was there to greet her when she left us last Monday.  I wish I knew who was holding her hand and giving her a tour.  I wish I knew if she was able to check in on us, to see that we are missing her, but hearing us say how grateful we all are that she is no longer suffering.  I wish I knew if she was making new friends and if she was able to meet up with her friends who passed before her.  I wish I knew if she was missing us and scared and who was there to comfort her on her tough days.  I wish I knew who was playing the role of her ema and if they are enough to help her adjust.

Today I spent a large portion of the day curled up in her bed, thinking about how I am going to decorate her grave on Monday for her birthday on Tuesday.  I let the events of the last 3 weeks playout in my mind, reliving every moment, analyzing our decisions, and wondering if there was any way we could have changed the outcome.  I know deep down unless we had a crystal ball last August we never had a chance of changing the course.  I also know even if we had that ball, all that would have done is let us know our time with her was nearing its end, and to be honest, I felt it in my soul anyway.  I know we did our best, I know her body never stood a chance and I know she has to be better off anywhere but here.  But I wish I could sneak a peak in through a tiny window for just 10 seconds to see if she was floating in a pool eating an ice cream sundae or running around with some friends, or sitting in a swing feeling the breeze hit her face...just so my heart could maybe be in the same book as my brain.

Losing

Death.  It is something that happens entirely too often in our already small CDKL5 community.  Every year I find myself and other moms I am closer with saying, "this is a bad year".  In reality, I am pretty sure every year since Sonzee has been diagnosed has been "a bad year".  Just one loss is honestly too many, and we have yet to finish a full 365 with only one loss.  When the losses come back to back, weeks or months apart it is especially more difficult.  Each death shakes our entire CDKL5 family to the core.  We break for the child's family first and then we break for ourselves.

Age doesn't matter.  My heart aches for the families of the babies, of the toddlers, of the school-aged, of the teens, and of the adults.  I walk around wondering when will it be our turn to join #lifeaftercdkl5.  I wonder if it really is even life after CDKL5.  Does family life with CDKL5 actually end?  I know the day to day dealings do, but you can't exactly end the life you gain with a diagnosis of CDKL5.  CDKL5 will forever be part of our life. 

Today, Sonzee's CDKL5 sister Sadie was laid to rest, for some reason her loss seems to have sent a tsunami of a ripple into our close-knit family.  Maybe it is the fact that it was "unexpected", yet at the same time, was it?  Our children suffer daily, whether it's publicly shared or not.  If you have a child with CDKL5 you know this.  It sadly really isn't ever a surprise that it happens, it is just the punch when you find out who it ends up being.  I keep thinking that there isn't anything left of my heart to break, but then another loss is shared and a new crack begins.

It has been 4 years and 2 days since we were welcomed into this family.  A family that continues to grow yet continues to shrink simultaneously.  A family that honors those we have lost with bows, colors, words, gifts, letters, fundraisers, and the hope for a cure in their honor. Prior to 4 years and 2 days ago we weren't aware that there was even a potential of losing Sonzee at an increased risk to that of her siblings, yet now we seem to be reminded of that reality every single day.

....life with CDKL5

It has been 13 days since my last blog post.  It is not that I have not wanted to write anything, it is more I just do not feel like I have anything new and/or worthwhile to share.  Things are what they are.  Neither great, nor bad, just what they are.  I suppose overall that is a good thing, but it does not support writing a blog post.  I feel like in the two years I have been blogging, I have already written about most of the same topics that are now on my mind.  The same things happen repeatedly.  There is not much new in the world of CDKL5 and how it has affected Sonzee, and so I feel like I have no new insights to share.  

Life with CDKL5 for me is a life on repeat.  There is the same heartache of CDKL5 sibling losses, lack of milestones achieved, and obstacles to overcome.  There is the same amount of joy felt for the Sonzee-stones accomplished and wishes for her future.  There is honestly a little less emphasis placed on hope, but that is probably due to me being a pessimistic/realist in general and not so much due to the events of the last two years.  Although the past two years have definitely stolen some positivity from my general outlook and beaten me to the core.  Sonzee's health is stable and so we are thankful for that, but that does not hide the pain she experiences daily or the seizures/spasms that come and go as they please.  

I have been spending a good majority of my time these past couple of weeks living in the land of denial and excuse making in terms of Sonzee's seizures and pain.  To be honest, sometimes that place is a comforting place to be.  I will probably do as I usually do when I enter this zone and hide out here until I enter the good old panic mode of desperation that this will inevitably lead to.  Until then I will just carry on, praying things remain calm while we are in New York, and praying for the families who have children with CDKL5 who are in the hospital, just being discharged, or who sadly just gained their wings...because this is life with CDKL5.

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It is with sadness...

We had a great Thanksgiving day with some close friends of ours and then we put the big kids to sleep.  Sonzee fell asleep in her favorite spot on the floor and then I went onto Facebook.  As one of the admins of the CDKL5 support group I receive notifications when a person makes a post.  I typically pop over to see what information is being shared or what question is being asked...and that's when I read the news.  The news I foreshadowed as the season began to change almost a month ago, the news that the entire CDKL5 family dreads...the news that informs us that we have lost another precious CDKL5 family member.

Instantly my heart begins to ache as it simultaneously breaks, my chest begins to tighten, and my pulse increases.  Unfortunately I know this feeling all too well because our CDKL5 family endures these losses far too often.  It is a mixture of pain for the family, panic that we could be next, relief for the child that he (in this case) is no longer suffering, anger that this child and his family had to deal with CDKL5, and sheer frustration that in 2016 science hasn't found a way to fix or eliminate genetic mutations such as CDKL5.

No matter how optimistic, hopeful, or positive we are as parents of a child with a CDKL5 mutation there is no winning.  We do our best to make our children as happy and loved as possible.  We give them as many opportunities to thrive as we possibly can.  We make decisions that will hopefully only increase our child's quality of life.  But in the end no matter what we do, we can't beat the CDKL5 mutations themselves.

As the holiday season officially begins as well as #GivingTuesday this Tuesday, I ask you all to consider giving a tax deductible donation to Sonya's Story to help fund crucial research (such as keeping Hope4Harper's cell line maintained for a year) so that posts like this one don't have to continue happening.  I ask you to consider buying Sonya's Story and CDKL5 apparel to help spread awareness of CDKL5 (all proceeds from those sales go directly to Sonya's Story to be given to research institutions to help us find a cure).  I encourage you to help us find a cure!


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