When it's dark...

Tonight was the big kids camp meeting for summer COVID19 protocols and guidelines.  The meeting itself lasted an hour, but the immense feeling of anxiety and fear are still going for over four.  Maybe it is because today is the 2nd day into a new month, and history states new months are my downfall.  Maybe it is because today is officially bereaved mother's day.  Maybe it is because tomorrow marks 15 months, the 65th Monday since she was last here.  Maybe it is what would have happened during the same meeting if Sonzee hadn't died and it was going to be year one for her two oldest siblings to be going away from me for a month and her one older one for 8 days. Regardless, here I am.

The meeting explained all the testing and conservative procedures that will be occurring.  I honestly don't mind them, they seem fair and appropriate, and will hopefully result in a minimal to no corona exposure experience for all of the thousands of kids that will be attending.  What actually began the tailspin in my mind were the words "no visiting day".  I anticipated this would be the case. I assumed they would want to limit the exposure of the virus into the camp, but hearing the words made my eyes begin to fill with tears. But why?!  I sat listening to the guidelines continue to be spoken and continued to take notes while simultaneously texting a friend to explain everything I was being told.

Almost an hour from the moment I wrote the first text my brain shed some insight into my panic.  It isn't the corona protocol, it isn't even really the no visiting day.  It is the fact that my children are going away and I can't talk to them and they can't talk to me, and my brain told me not to worry because 12 days in I would be rewarded with a hug.  Instead, now it will be an entire month...and I have to remind my brain that this time it isn't because they are joining their sister (heaven forbid).  As of tomorrow, 65 Monday's ago I kissed and said goodbye to Sonzee and that was the last time I saw her, the last time I could hold her and talk to her.  While the rational part of my brain knows it will be seeing pictures of her siblings daily and it knows they will be having a fantastic summer experience, the grief-stricken bereaved mother of theirs is trying to separate out the reasons for their absence and emphasize it isn't permanent, and they will be coming home.  It isn't something that is even easy to make sense to someone who hasn't buried a child.  I can't 100% say it makes any sense, but in grief, rational doesn't exactly have a track record of a first-place win.  

When the idea of sleep away camp first entered my mind I had five living children.  The tears that filled my eyes were a mixture of excitement and remembrance of my childhood summers away from home.  Then Sonzee died, corona happened, and this journey began on quite the detour with splashes of a previous life mixed in with life after.  Every day I try my best to pretend that the loss of a child isn't living through trauma.  I try to remind myself that nothing is up to me, it is all out of my control, and like the quote sitting on my desk staring me in the face, I feel like the only thing I can do is "when it's dark look for the stars" because otherwise, the black sky is just all too much.

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.

There's always one

There is always that one picture that does me in.  Every. Single. Summer.  The one that I know is inevitably going to occur but I have forgotten over the year is going to be taken so it will always continue to catch me by surprise.  It is the one that makes me smile for a split second before my brain registers what I am looking at and what is missing, well actually more like who.  This is then followed by a dialogue that occurs silently within my mind about how nothing/no one is really missing and that it is just the (sad) reality of life.  Yet, my internal negotiation doesn't change the fact that the damn picture has still managed to pierce my heart.

I HATE after 4 years on this journey that these types of moments still occur.  More often than not I find myself in a state of numbness that only periodically allows this sort of real life pain awareness to seep inside.  Call it whatever you want, it is one hell of an amazing protective device, and personally, I prefer the numbness over the stabbing pain my heart feels when one of these moments creeps in, so I am glad they are only occasional.  What I dislike most is that it almost seems like my mind takes the picture completely out of context.  Where I should be looking at my oldest daughter, her best summer friend, and her little sister, standing on scooters posing for an adorable picture, my mind does not see Sonzee standing next to (who should be) her summer best friend.

I HATE these types of reminders of how old Sonzee is.  I HATE these types of reminders of what Sonzee is unable to do, of who she is unable to be, of how much of life she is missing out on.  I HATE that this picture that I should be printing and placing in a frame for my oldest daughter because it is such a great picture, takes the breath out of me every time I look at it.  I HATE that these types of reminders pop up randomly without notice and seem impossible to prevent.  I HATE that not only was she missing from the picture, but she was sitting at home miserable, unable to be outside.  I really do my best to not focus on what Sonzee isn't able to do, or doesn't do, or can't do, but sometimes life seems to get in the way.

I knew

I knew the day would come.  I thought about it numerous times during her first year of life.  I wondered when exactly the moment would happen, how it would occur, the situation I would find myself in.  I never had a clear image of what exactly would transpire, but I knew after so many encounters that one-day things would be vastly different. I knew there would come a day when the small talk surrounding a run in encounter with a "baby" in a stroller would yield a different response than "how cute", "oh, is she 1?", "what's her name?", "she is so pretty", "what pretty eyes", and/or some other similar but positive and smile exchanging encounter.  I wondered at what point it would occur, always fearful of the day it would happen, but then of course forgetting about the potential on the day that it did.

After all the years of hesitant exchanges standing next to her stroller, eager to just smile along and chuckle at whatever praising remark was made, the one time that I forgot it could occur, is of course when it did.  I knew she wouldn't be a baby forever, I knew she wouldn't be tiny forever, G-d knows she has enough tubes and medical interventions erasing the Failure to Thrive diagnosis as we speak.  I was never naive enough to think that she would always get positive head turns, but in the end, maybe I was.  I knew once she was bigger she would get noticed for her hand stereotypies and her abnormal flexibility.  I knew people would start to realize she wasn't a baby, but in the majority of ways, she really still is, and ironically the phrase "look at the pretty baby" that used to make me grit my teeth because she wasn't a baby, I wish would return.

I knew her growing up would eventually happen, but I didn't expect for the day to occur while walking down 68th Street in New York City.  I knew one day someone would act in a way that hurt me to my core, but I didn't expect it to be a man walking a cute Yorkie named PJ, who (I can only assume) had zero intention to break a mother's heart while he was out walking his friendly dog.  I knew one day it would be completely obvious that the little girl in the stroller with splatter colored framed glasses and a customized pacifier clip was not actually a baby, but I didn't expect the silence after responding to the question about her age to be so deafening and feel like an eternity was passing by.  I knew one day there would be no words to fill the awkwardness that filled the air.  Yet the thing about preparing for the future with a diagnosis like CDKL5 is that there really is no way you can, because no matter how many dress rehearsals you have; when the curtains lift and you find yourself center stage, it is never exactly how you anticipated it to occur.