Friday, April 3, 2020

Without

Rock painted by big sister Meena in honor of it being 2 months

April 3.  The date that has been marked in my mind for months.  It is officially 4 months since Sam lost his dad and 2 months since we lost Sonzee.  They say everything happens in three's, so to say we have been nervous about the approach of today's date is probably an inadequate understatement.  Despite the trepidation of waiting to close out today without losing someone we care about, in general, today is weighing heavily on my heart.  The air is seriously so hard to breathe when I actually focus on the fact that it has been two complete months since she was last in my arms.  It becomes even more difficult when I consider that it isn't supposed to be this way.  None of my dreams ever included becoming a special needs mom and then having to bury the child who earned me that title.

Many still feel awkward asking me how I am doing, some ask as if nothing has even happened.  There have been moments when I really have been doing okay.  There have been moments when it has taken everything within me to embrace my inner Golden Globe performance in order to function.  I wish I knew in advance which conversations would be no big deal and which would result in tears either flowing or attempted to be hidden.  It would be nice if I had a magic 8 ball to give me some morning guidance as to how the day would unfold.  More often then not, I am still just finding my footing in this quicksand.

It has become increasingly more difficult to hide from it all.  All of the kids are home but her presence is gone.  I spend a good portion of my days keeping my mind preoccupied with projects, helping the kids with their classwork, and working myself.  If I stick to the mental hamster wheel I won't get pulled into the abyss of grief; but randomly throughout the day, the glimpses of grief are unavoidable.  It's sneaky, creative, and always when I am least expecting.  Moments that follow a seemingly innocent memory or thought of calmness are the worst.  I sometimes find myself wondering if there is a way to go back to a time where she was physically here, but then I quickly remind myself that it wouldn't be best for her.  It is a sound argument that logic cannot deny, so it buys me time until the next sneaky approach.

Many moments are spent reminding myself she was only 4 but she did in fact live.  Many times are spent wondering if it would have been better for her to have lived another 5, 10, or 15+ years only for us to end up in this same position.  I sometimes even wonder what if she never had a CDKL5 mutation, would we have lost her at 4 regardless?  Does it even make sense to hypothetically wonder if one way is worse?  I don't think there can be a worse when it comes to being a grieving parent, it is not a role anyone volunteers for, it's right up there with a Hunger Games assignment.  It's just a random fluke of a horrible lottery where you pray the odds won't ever be in your favor so you don't have to celebrate the milestone of counting the days of your life you are now spending without your child.

The Mighty Contributor

Wednesday, April 1, 2020

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.

The Mighty Contributor

Monday, March 30, 2020

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


The Mighty Contributor

Thursday, March 26, 2020

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.

The Mighty Contributor

Monday, March 23, 2020

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

Friday, March 20, 2020

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.

The Mighty Contributor

Tuesday, March 17, 2020

Owls

Dear Sonzee,

I am sitting here with you amongst this time of social distancing, while I don’t think you could be any further from me, this is the closest I can get. I keep seeing all of your friends' parents changing their Facebook profile badge to the one that says “Your only is my everything” and ironically it pains me that I cannot do that.  I wonder what I would have said to myself 5 years ago today when you had your first EEG had I known where I would find myself today.

A week and a half ago I saw an owl in the tree across the way from you. I took so many videos and pictures because I have never seen an owl in real life in a tree so close, I also was not sure aba would believe me if I just told him about it. There happened to be a funeral going on at the time and I wondered if this person had any relationship to owls.  Minus an owl dress and a pair of pajamas we never really coined you an owl girl.  I went home and while working on your room, I came across a picture that Laeya made for you.  I am unsure when she drew it, but there is a bird saying feel better to two owls sitting on a branch in a tree. I hung it on the wall yesterday. Today while I have been sitting here with you, Mr. owl has been hooting away.


I keep wishing you were here but at the same time I am so thankful we don’t have to worry about you being taken away from us because of a virus. That was always my worst fear. No matter what we did to try and protect you it was never enough, you always managed to get everyone’s “allergies” anyway. I couldn’t help myself and I signed into the PCH portal last night to look up your previous positive respiratory viruses. You were the queen of adenovirus/rhinovirus and you even had the HCoV-OC43 coronavirus. My heart sank to see all of your future appointments removed but I am so thankful someone took care of that for me and that no one made me have to call every office to cancel them; doing that for your feeding pump was horrible enough.

We started a grief support group last week. Sadly it has been put on hold due to social distancing, but your siblings after essentially having to force them to go are begging to go back.  It makes it worse they aren't having it right now, but I am so happy they enjoyed it.  Of course, they were each given another beanie baby and a blanket (because we don't have enough of those) but that definitely made them smile. I was hesitant to take another blanket myself, but sometimes it gets windy and chilly when I sit with you and I have already gotten to use it.  Meena and Laeya have been more openly vocal about them missing you since that first meeting. They say how much they just miss having you around. Noam has started to make it a routine now to request the book of you and him at nap time and bedtime. Tzviki is still keeping to himself, but he did share his favorite time with you was that last week when you two snuggled and told stories, I am so glad I recorded the entire event.

I am not sure if you have viewed your space from above, but after each storm, the dirt and rocks sink in.  I have been there every time and each time it manages to get worse.  The guys at the cemetery have been amazing fixing it within 24 hours, but sometimes I am quicker to visit than they are to get it back up to snuff.  Apparently tomorrow it is supposed to rain really hard all day, so Mr. Ira came out to warn me that he will have it fixed as soon as the weather permits, thankfully everyone continues to make sure they take care of you.  

I was warned that no matter what happened when you were dying that I would find myself reconsidering every decision.  I was cocky at the time so confident in our choices that I couldn't imagine that would ever be the case.  It is amazing what 6 weeks and your absence can do to my mind.  I still know we had no control over what happened, but at times my mind wanders to that land of what if.  Thankfully I have people who entertain, accept, and support my wandering but also steer me back on the path making sure I really know that we did the best for you.  It is just hard, life without you little bear is just hard.  Every little thing depending on the day is just hard, so I am trying to just focus on a day at a time.

I hope you have had an amazing 6 weeks and have made all sorts of new friends.  Hopefully, you don't have to worry about social distancing wherever you are and your days are filled with tons of swimming, eating, and whatever else it is your heart desires.  Know that we are all still surviving without you despite our broken hearts, and we all look forward to seeing you and hugging you again.

With love always,

Ema

The Mighty Contributor

Monday, March 16, 2020

"Dondee"

Every night when Sonzee's little brother goes to sleep he requests to read his favorite book, or two, or sometimes three.  They are usually the "poo-poo" book (Old McNoah), "Never touch a dragon", or "10 tiny racers".  He will dictate where we are going to sit in his room.  It used to be us snuggling in his rocking chair, but now it has turned into us squeezing onto his bean bag or him in his little rocking chair and me on the floor.  After we presented him with his "Sonzee and I" book the other day we would ask him if he wanted to read it after his first book at night, both Sam and I have read it one or two times, but it has not been a book of choice.  So last night with his first book choice in my hand, and his milk bottle in his, we begin our normal routine. 

We both alternate singing the words to "Old McNoah built an ark", with the slight adaptation of "McNoam", because it sounds cuter to use his name.  He brings "two tows" and they "moo-moo heee and moo moo da".  Then he gets "two ducks" and they quack (although I won't lie, he totally substitutes an "f" for the first "q").  The book goes on to discuss pigs who go "oinkee", and lunch being served that turns into it becoming quite smelly (hence "poo-poo" book).  The rain starts to fall, the ark goes "oopsie daisy" and then dry land is spotted, "ya-hoo", and of course "e-i-e-i-o".  The book finishes and little brother pops up and walks towards the middle of his room.  I plead with him to come back for another book, he says "Dondee!", I am not sure what he is saying exactly.  He reaches up on the dresser, "Dondee!".  Then he grabs the book.  "Oh...you want the book of you and Sonzee"

"Dondee Book".

So he brings it back to sit down and we begin to read.  I have read this book to him already, I wrote the book, it has only brought a huge smile to my face, except last night when it became requested book #2.  Fighting back the tears he let me read every word not rushing to turn the pages.  He had me read it a second time pointing at her picture every time while I said "Sonzee" and then pointing at his picture while saying "Noam".  It is always a moment like this that catches my breath, one that makes me smile with such joy and happiness, yet simultaneously breaks my heart.  It is one thing to have to sift through my emotions and the pain of her loss, but to know her baby brother aches for her is just such an addition of pain to this already horrible process.  I am so thankful this book will give him (some of) the comfort he clearly needs, but I wish so much that he could just walk into her room or see her in her PPOD and say "Dondee" with the same excitement he does when he sees her picture in his book, like he always did.
The Mighty Contributor

Friday, March 13, 2020

Weird place

My newsfeed is full of memes, alerts, and pretty much all things coronavirus.   Occasionally I hit the "love" or "like" button when I see the memes comparing this outbreak to that of life with living with a medically complex child or the jokes about people buying out hand sanitizer and toilet paper.  Occasionally I get infuriated (like I have for the last 5 years) when I see news reports of disrespectful and selfish people who exhibit symptoms of an illness (despite that the main advice is to stay out of public if you have any potential symptoms) are testing positive after they have exposed thousands of other people to what turned out to be coronavirus by going out in public.  Occasionally my heart sinks when I read the posts from special needs families about how these new rules are just how those of us living with someone who is medically complex spend our lives because despite the routine, despite the familiarity of this panic, I don't have a reason to be part of it anymore.

I find myself in this weird place.  I feel like I am a stranger looking into a window of a home that once was mine, one that was so scary to live in, one that brought me to tears and ultimately heartache, but one that is familiar, brings me comfort, and has left me unable to fully move away from.  I don't have a reason to be fearful of my kids being around others who have a sniffle, but my reaction is to cringe and think negative thoughts about the parent who says "it's only allergies".  They have no idea what "those allergies" could have done to our family.  They aren't aware that there is a nose swab that can identify those sniffles and those "allergies" in 1 hour, and it doesn't matter to them that their child's "allergies" have a name.

These precautions are simply a way of life for a rare but fierce community that has lived with the fear and anxiety that so many are filled with now.  I feel sort of slighted that no one cared before.  I feel like screaming at every person running to the store buying hand sanitizer, toilet paper, soap, and every Lysol product on the shelves.  I feel so angry that the world as a whole doesn't really have any empathy for those who are most vulnerable.  What makes me even more livid are those who are STILL going out into the public with symptoms, despite the warnings.  I cannot comprehend how people have to be told to stay home when they have any symptoms.  I cannot comprehend how people are so selfish that they feel whatever reason brings them out into the public weighs more than someone's life.

Besides my fear for all of Sonzee's friends and their families, I don't have a reason to panic, but old habits die hard and tonight my heart simply hurts for those of us who have our own personal amazon locker of supplies because that was how we help to keep our children alive.  It hurts because it took a mass population to be effected for societal rules (of common sense) to be implemented.  It hurts because our family doesn't count anymore in a category that I most relate to and understand.  It hurts because I am fearful of another parent joining this horrible club due to ignorance and heartlessness. 

There is a sad sense of relief that I am no longer part of a community that requires me to personally panic, but I won't ever be able to stop advocating for common sense and for all of the family I have gained because of Sonzee.  So I beg of you, stop buying hand sanitizer, stop buying toilet paper, stop buying every disinfectant agent out there, just stop.  Long after the immediate fear and quarantine of COVID-19 has dissipated there will still be other respiratory viruses such as THE FLU, CORONAVIRUS, RHINOVIRUS, RSV, PIV1, PIV2, PIV3, ENTEROVIRUS, and ADENOVIRUS.  Odds are the majority of you never considered most of those listed above are the names for "allergies".  So, when the world returns to normal, when schools reopen and when gathers reconvene, what I implore of everyone is to simply remember the panic you feel today.  Please always remember there are families who feel this sense of panic and anxiety every day and reconsider your initial desire to leave your house with your "allergies".  




The Mighty Contributor

Wednesday, March 11, 2020

Should have

Yesterday was a really tough day.  It was one of those days where everything just compounds on top of one thing after another and you are left to sitting on your couch watching a movie from 2008 on Netflix drinking a store-bought mocha frappuccino your daughter brought home for you, after having received random texts from people throughout the day feeling the urge to check-in, and then someone randomly shows up at your door with an alcoholic beverage and to talk as if it was all organized from beyond to say, "you are not alone, we got you, we are here".  To be honest, the support is amazing, the support is definitely warranted, but the fact that it is needed is just so challenging for me to have to accept.  I think I cried more yesterday than I have in the past 5 weeks, I guess it was needed, I just wish when the tears stopped so would all the pain and thoughts so that the tears wouldn't have to start back up again.  I know that won't be the case, I cannot shake the thoughts so I might as well, for now, tolerate the tears.

One of the seven stages of grief happens to involve pain and guilt.  Apparently, it's part of the normal process and occurs as the shock wears off.  I wish I could have seen it coming, maybe I should have done a quick google search to prepare myself, but instead, I spent the day feeling such an immense amount of guilt, that google was unnecessary.  Whether it be rational or not, it doesn't change that I cannot push the thoughts away.  I feel like a complete failure over the fact that my parenting clearly was not good enough to keep Sonzee alive, and in addition, her siblings suffered without having as active of a mom as I wish I could have been for close to 5 years because I was the primary parent for Sonzee's needs.  So in the end, Sonzee died and I failed them and missed out on so much and for what? 

Everything with her health required my advocacy, I wish I had been a better advocate?  I should have demanded we take her off TPN when I was unsettled in August.  I should have been as adamant as I was about her entering into hospice for her last days all those other times I felt that I needed to humor everyone else.  I shouldn't have allowed her to be subjected to every potential remedy that I knew would result in nothing beneficial and just said "No!" That was my job!  I am the one who knew her best!  I am the one who knew when she started to decline.  I am the one who listened to what she wasn't saying...but I wasn't the one who was able to save her.  I cannot figure out how to balance "what I did do for her" with what I ultimately couldn't do for her.  Anything positive seems so insignificant and meaningless compared to the fact that she is gone, forever, and whatever I might have been able to do is no longer a matter of discussion.  I should have been able to do more. 


The Mighty Contributor 

Monday, March 9, 2020

Feel the grief

"Try to accept where you are at.  Feel the grief instead of fighting against it."
The above are words written on a page in one of my child loss grief books; my eyes swell with tears every time I read them and my heart tells me it's solid advice, but for some reason, my brain is too stubborn to even consider their suggestion.  These words echo the same advice that was shared by a holocaust survivor I recently attended a lecture of, I know I should be following them.  Yet, I have had similar difficulties over the last 5 years accepting where I was at with her CDKL5 diagnosis, so I can only imagine how this whole acceptance of my current state of grief or really of her not being here is going to unfold.

I have been having difficulty accepting anything about what occurred 5 weeks ago; especially that it has been five entire weeks, that it has been more than a month, that it has been around 50,400 minutes, really that any amount of time has gone by in general.  I know she is not in her room, I know she is not in our house, I know she is not at an extended stay at the Ryan House, I know she is not here on this earth, I know exactly where her body is located yet I cannot allow myself to actually process that.  It is significantly easier for me to remain in this land of denial and not accept any of it, versus feeling all the feelings that any level of acceptance would bring.  I am sent into an immediate state of panic if I even consider feeling, and the pain is just too much to bear as it is when any amount of tears fall from my eyes.  I cannot possibly justify feeling any more of this.

I allow myself to feel grief in moments, in small doses, in an almost tangible amount, but anything more than split seconds of acknowledgment is just more than I can even consider.  Maybe where I am at is "fighting against it" and at this current moment that is just where I am going to need to remain to continue to be a functioning member of society.  Maybe in a sense, I am actually accepting where I am at, that I am unable to fully feel the reality of grief.  I guess, for now, that is going to have to be my attempt at trying because I am just not ready to feel any more grief. From where I am sitting, "fighting against it" is actually a whole lot easier than feeling, and to be honest I am not sure if either way is right.


The Mighty Contributor

Wednesday, March 4, 2020

End of Shloshim

Dear Sonzee,

Today is the end of Shloshim.  My world supposedly is returning to normal tomorrow.  All the restrictions for the past 30 days will be lifted and life will partly go back to how it always has been and yet will never ever be the same.  Tonight we are having a celebration for you.  I went last night to put out 22 tables, and as I was putting chairs around table 19 I started to cry.  It had nothing to do with the tables or the room and everything to do with the reason behind the setup.  22 tables should be in a room to celebrate your Bat-Mitzvah or your wedding.  22 tables should be in a room to celebrate the birth of your first daughter at kiddush or your first son's bris.  22 tables should be in a room to celebrate anything but the fact that you lived for 4 years 11 months and 22 days.

The 22 tables, as well as the room, will be decorated in your favorite color red, black because we always used it to help you with your vision, and grey/silver because it sparkles and compliments the red and black well.  Auntie A and I made a glitter banner for your candy area that we totally could have bought off of Etsy, but it was so much fun to use her Cricut machine, and it only took 3 hours of our day.  I should mention it was fun to do, turned out great, is so sparkly, and amazing and it looks store-bought.  We have tons of red, black, and silver candy sitting in the house.  Noam keeps walking around saying "Dondee Tandy".  He was so excited over the dum-dums that arrived last night after I panicked over not being sure we had enough candy for the number of people attending, and he kept shouting "law-wee, law-wee...Dondee tandy".

I threatened your siblings with not staying the entire time tonight because they cannot seem to get their act straight lately and get to sleep on time.  I am sure you would be rolling your eyes at their shenanigans these days.  Laeya wrote a song and will be singing it for you tonight, she even invited Meena to sing two lines with her, it makes my heart burst that she did that, but I know she wishes you could be singing with her.  It is a really sweet song, I hope you can hear her sing it; don't worry, she has been working with Mrs. Kasiah for voice lessons and really doesn't sound too bad.  We also have a couple of slide shows, and honestly, it was really challenging limiting what pictures we used even though it was less than 5 years that you were here with us.  You really did have a jammed packed life and I am so grateful I have so many pictures and videos to help keep the memories alive.

We are doing a mitzvah project that involves asking everyone to take on a new mitzvah in your honor.  We will have books at your celebration that represent different "chapters" that each person can write their name in and we will then put them together to be part of one book of mitzvahs.  We are also working on something at Chabad to give the boys tzitzit and a kippah when they turn three and girls their first candle to light for Shabbas, but we have not finetuned the details just yet.  We have one more special surprise we are working on, but it isn't finalized yet and I want to tell you it when it is solidified, I think it will make you extremely happy though.

I don't know if you know I have gone to visit you every day except Shabbas since shiva ended.  You have quite the collection of rocks and your room looks really nice and kept.  After the rain last week they had to fill in the front by the sidewalk, but they did it within 24 hours.  I have now spent many collective hours chatting with Ms. Wendy, Mr. Ray, and Mr. Darren.  The grounds staff is there all the time as well, and I often wonder how they have so much to do, but at the same time, you have gained quite a few neighbors over the last few weeks, so that has kept them pretty busy.  Tzviki, Meena, Laeya, and I took a walk on Sunday through the entire cemetery reading the headstones and giving our opinions on the prettiest colors and neatest looking ones.  We are all excited for yours to be up, but we still haven't figured out what we are writing on all of your pieces.  I am sure it will eventually come to me, and since we have time, I am not worried.   

I switched out your closet cabinet with the Ikea unit in the playroom so Noam stops spilling out all the board games.  It is working like a charm so far, but it has only been 2 days.  You have so many items that can now be on display that the Ikea unit is a much better fit anyway.  I still have so many items to hang and so much to do for your room to be complete, I am sorry it is taking so long.  I have been keeping myself busy preparing for tonight that I am a bit scared about what is going to happen tomorrow.  I am thinking about going back to work, but I am so nervous at the same time.  I am just still having a tough time figuring out this whole living life part without you here.  It still doesn't make sense, it is still weird, it is still wrong.

While I could continue to write you a novel with everything I want to tell you I am sure you have other things to occupy your time. So, if I could make a request, I would love for you to come over to Chabad tonight between 5-8 because you have literally hundreds of people who are coming to celebrate your life and I want you to see just how truly loved you are and always will be.

With love always, 
Ema


The Mighty Contributor

Monday, March 2, 2020

4 weeks

Today marks 4 weeks since I last held Sonzee, since I last gave her a kiss on her soft little cheek, since I last picked her up for the last time, since I last walked her outside the house for the last time, since I placed her on a stretcher, made sure she was buckled for the car ride and made sure she had two blankets because it was cold that Monday afternoon.  As soon as I made sure she was safe, I turned back around and walked quickly back into the house but didn't know what to do.  I couldn't look at anyone, I couldn't talk, I knew either would result in me breaking down, so I think I just walked around the kitchen putting things away and keeping my mind and myself busy. 

It was only 9 days prior that we had formally admitted Sonzee onto hospice, which was after 4 days of uncertainty between Sam and me.  It was 18 days after her very first symptom began, and 15 days after I realized what was really going on.  No matter how much time passes I think every moment leading up to her final breath will be replayed in my mind.  No matter how much I know there was nothing we could do for her, no matter that I honestly have no regrets over how we spent her last weeks, it is still really hard to accept there really was nothing we could do to change her outcome. Sam and I both have spoken to numerous medical professionals and we know that she was not sick with an infection.  We know there were no antibiotics to give.  We know there was no way to stop or reverse that her organs were shutting down just because. 

Now 4 weeks later,  while I accept that her body was exhausted and that it was her time, and she put up one hell of a battle for 4 years 11 months and 22 days, I still wonder what if we could have somehow known or prevented the domino effect that occurred in her body, as each organ started to malfunction?  What if we had been more or less aggressive with seizure control?  What if we had chosen different formulas or diets over her life.  What if we had made one small or seemingly insignificant decision that would have changed the outcome?  I know the what-if game does no good to play. I do know we did make the best choices for her based on the information we were presented with each and every time.  But it will always come back to what if something could have been done to prevent her CDKL5 mutation in the first place, what if we never even knew such a game of life even existed. What if we had from the start had a perfectly healthy, smiley, and happy Sonzee....what if?

The Mighty Contributor

Friday, February 28, 2020

Fine

I was doing fine yesterday.  Well, maybe that isn't exactly the truth.  I should probably be honest and say I was doing fine because I have almost perfected the art of ignoring potential triggers.  I know I should stop ignoring them, I know I should allow myself to really feel the emotions as they come and let everything out, but I am just not ready yet.  I know that doesn't sound all that intelligent, because when will I ever really be ready?  I do not have that answer, but I know for right now it is just too much.  So like I was saying, I was doing fine yesterday...until I took my oldest to swim.

Two weeks ago Sam took our youngest to his swim class who also happens to be with Sonzee's coach Ed.  He mentioned to Sam the pink float that he really only used with Sonzee was in the same spot since the last time she used it.  He mentioned he couldn't bring himself to move the float (thankfully no one else has either).  I get it.  Sonzee's pacifiers and glasses still hang in the same spot since the last time we removed them from her.  Her backpack still hangs on the feeding pole, her cell phone we used for seizure tracking hasn't been moved from the pocket in her bag, I honestly doubt it is even on since it has not been charged in close to a month. There are just some things that take time.

I have been to swim multiple times since Sam told me about the float, but for some reason, I didn't think about it any of those times.  Then yesterday, I took my oldest to her swim class.  I sat down in the same chair I always sit in facing the pool, just sipping my iced mocha, and there it was, the pink float not on the hook, sitting in a crate staring at me.  It wasn't up on the hook, it was just sitting in the crate waiting for "the next time" it was going to be used by Sonzee.  Clearly, a lot of us were just not ready for no more next times.  I don't know how I will feel when the float is eventually put back up on its hook, but seeing it in the crate and realizing she hasn't been at swim in 6 weeks made the tears fill my eyes. 

Having the float down helps my heart to know how loved she really was, it is a clear reminder that I am not the only one missing her or feeling a void.  I guess a lot of us are just not ready to accept that she isn't coming back.  Or maybe it is just that we know that she isn't, but we would rather not have things constantly remind us of that fact.  Maybe for now it is better for some of us to keep some things the way they were so we can have more moments where we are fine. 

The Mighty Contributor

Monday, February 24, 2020

Time



It’s been 3 weeks. When I say that it sounds like it has been hardly any time, yet the reality is that it feels like it’s been so long.  At the same time everything about life with Sonzee feels like it was just happening yesterday. I can look at the pictures of her life each day as they pop up in memories from over the last 5 years and tell the details surrounding the image, but I cannot believe it’s been 21 days since I gave her a kiss and carried her out of the house for the last time. I feel like I’m traveling in a train through a tunnel at full speed looking at a blurred landscape flying by.  I’m fearful of the train slowing down.

I’m torn in a mental limbo, worried about what will happen when my brain admits that life without her now is permanent, that it will be my forever, and wondering how even though it was four whole years she spent with us I feel like I have to remind myself she wasn’t just a dream, she was actually here, she did actually live.  I have pictures all around of her, equipment of hers unoccupied in our room, the supplies that literally kept her living for all of her life in the hallway, everything is unavoidable, I see constant reminders of her everywhere, yet it all feels like none of it happened.

I find myself wanting time to stand still so I don’t have to accept the time passing by without her, but I don’t want to deal with life without her in it, so I want the time to keep passing by.  I want to keep her things around as a visual reminder that she once lived in our house, but I want anything anyone else can benefit from to get out and I want the rest of the daily reminders gone.  I dislike the yin and yang going on in my mind, I wish I could figure it all out today...but I guess it will just have to all come with time.


The Mighty Contributor

Friday, February 21, 2020

Part 2: Firsts

During the last week and half of Sonzee's life, Sam asked me what I would say when someone would ask how many kids we had.  Despite being a planner in general, for a lot of Sonzee related items, a common response from me was, "I don't know, I will see what happens when it happens".  I don't recall what his answer was, but I am fairly certain I turned the question around as a standard conversational gesture.  I won't lie and say I never thought about what my response might be, but I did feel as it has always been with Sonzee,  that it would be dependent on the circumstances, on what I was feeling, on who brought up the question, and a various amount of other unknown variables.

Fast forward to this week when I ran into a mom of a child our oldest used to dance with, her second daughter is now ice skating with our middle daughter.  It was nice to be talking about the older girls and catching up on what they are now up to, but then it happened, catching me off guard.  The innocent statement was said,  "You have four kids right?"  This direct statement was not one I prepared for, I didn't anticipate the question would be asked in that manner.  She wasn't wrong though, I did have four children when my oldest was at dance.  The four children she was referring to included Sonzee, who at the time was a baby.  My brain quickly wondered, how do I answer this?  What do I say?  I don't know what to think, I don't know what to say.  I can't let her think Noam doesn't exist, but Sonzee is no longer part of the active count.  

After what felt like an eternity to me, I began to speak, but my brain wasn't connecting to my mouth.  It began with, "well, umm...so yes I did have four, then I had five, but now I have four."  I don't know if I paused at all, or what her brain was doing while I spoke, but I followed up with more rambling.  "Well, so, my daughter died 2 weeks ago and she was the 4th child you are thinking of, she was a baby at the time, the one with special needs, but then I also had another baby who is now two, and so I had five, and now technically I have four, yes, but really five."  She, of course, felt horrible for bringing it up, and then, of course, my verbal vomit continued by saying, "oh it's ok, it's just you are the first person to ask me the question since she passed and I haven't figured out how to answer the question" Which again, I could tell made her feel awful.  SIGH.

Why didn't I just say I have five kids?  Besides that being an easier answer, it is the truth.  I have five children, but yet, I don't.  I am not actively caring for five, it is almost like that cheats the system to say I am parenting five kids.  I am no longer a mother of five who "gets what having five kids is like, and one who is special needs".  I no longer have five car seats in my car.  We no longer book travel as a family of seven. We are only six in the count of RSVPs.  We now have two empty seats in the car.  We now have a completely empty trunk where a wheelchair used to reside.  We actively have four children.  Yet saying we have four children feels like I am erasing Sonzee, it feels like it is lying, it feels like I am choosing to not acknowledge her.  But saying we have five children feels like I am not honoring the reality, it feels like I am misleading others, it feels unfair to Sonzee.  I still don't know what the answer should be.  I am well aware that there are going to be a lot of other firsts along with this new chapter, but I am just not so sure I am going to be ready for them.


The Mighty Contributor

Thursday, February 20, 2020

Dear Sonzee: An update

Dear Sonzee,

I should be working on something for your celebration that is in two weeks, but I just can't right now, and I am so sorry about that.  I worked on it here and there today, and honestly was much more productive with it than I have been, but I cannot bring myself to sift through more pictures right now. Instead, I put a song on repeat that I have always known would be fitting for when a day like this was bound to happen, relocated the box of tissues to within hands reach, and decided to write you a letter.

I am not sure if you received Laeya's invitation to her school event Thursday (today), she asked me if I thought you would be able to come.  I told her if you could, you would, but I wasn't sure what else you had on your schedule.  If you have a free moment between 2:55 and 3:45 AZ time, maybe you could drop by and knock her poster over or have something fall around her to let her know you popped in.

I took Auntie A with me to see you yesterday.  She did really well considering the cemetery isn't exactly her most favorite place to be, and honestly, before it became your new home it was the last place on this planet anyone would ever expect to find me.  Yet it is the only place on this earth where my heart doesn't actually hurt and I feel like I can fully breathe.  I know for a tiny fraction of my day I can find some peace and I hate when I have to leave.

Your little name plaque is becoming completely covered by all types of rocks.  I ordered a red wire basket to hold some of them so it doesn't get too cluttery over the next few months and hopefully it will be here before I go to see you later on today, if not I will bring it tomorrow.  I cannot wait for 8 months from now when you have all of the adornments up.  You will have the most perfect headstone, a yahrzeit candle area, and a beautiful bench. 

During bedtime last night Meena told aba that you were the one picking out the book to be read.  Aba chose the book he thought you had chosen, but Meena immediately corrected him and told him that was not what you chose.  She wasn't happy after that book was done though because she wanted to read her choice book since you chose the first book and aba said "one book".  Meena keeps saying you are around the house, you know we are always hesitant to trust that one, but I am starting to believe her a little bit...or maybe I just really want to.

Noam has started to ask where you are.  I tell him, "not here", and he asks "home?", and I tell him "no, she is not home", he then asks "Paige?".  I think he finally figured out you two are not the same, but it is so hard for him to understand you aren't coming home and nurse Paige isn't coming over.  To be honest, there have been a few mornings where I have to remind myself nurse Paige won't be opening the garage either. 

Tzviki scored at his tournament this past weekend.  The rink wasn't so cold, but I wore your beanie in your honor the first day anyway.  I wore the sequin red boots and received so many comments.  You probably would have loved the rink because the wheelchair seating was at the top and you would have had a great view, the wall in front was all glass too.  I didn't miss you kicking off your boots though, that would have been a pain because I know you would have sent them over the glass wall multiple times since it was only half height.

Aba and I are continuing to figure out life without you, but we are starting to realize there really is nothing to figure out.  We both feel lost, we both feel like we are missing something, and that isn't ever going to change.  No amount of time is going to fix your absence.  No amount of time is going to make this better.  It will be just how your original diagnosis of CDKL5 was for us.  Always there, never changing, something that we will just have to learn to live with no matter how difficult and painful it continues to be.

We really hope you are having a fantastic time wherever you are, and I hope you aren't being too carefree with your freedom.  Be safe and know you are extremely loved and missed.

With love always,
Ema


The Mighty Contributor

Tuesday, February 18, 2020

Surviving

It's been 2 weeks and 21.5 hours, or 14 days and 21.5 hours, or simply 358 hours.  I read somewhere that life will now be divided into before and after segments, that does seem to be holding true.  I supposedly have gained all of this time not having to care for her physically anymore, but yet I cannot seem to find time to do anything.  What did I do before?  I remember thinking about that after each time we had another child, it never really did make sense how the number of hours in a day didn't change, yet there was more to do and somehow there was room to at least half attempt a good job at completing all the responsibilities.  So here I am almost 15 days later, not working, not taking care of Sonzee and all of her needs, and not having any time (or really desire) to get anything done.

I can't seem to grasp how the world is moving on at a regular pace, yet I feel like I am living in slow motion.  I can't seem to grasp that she isn't here, yet there are constant reminders of her absence.  Sometimes it almost feels like she was just a figment of my imagination, was she really even here?  How was it for almost 5 years?  Why did those 5 years seem regularly paced with the speed of life in general, but now time without her from the outside of my bubble feels like it is speeding by, but from where I stand I am the turtle just considering starting the race?

One of the books I am reading has a subtitle about "surviving the loss of a child".  The word surviving jumped out at me this morning as it is sitting next to me on the desk.  That is essentially what I feel like I am doing.  I am just surviving.  There is nothing fancier than that going on over here.  I am merely existing.  I go through the motions of life and smack the smile on my face but to slightly alter my own quote from our fundraising video in 2017, it is extremely devastating to have had an almost 5-year-old little girl and see all of these milestones that she won't be able to do, and we are supposed to just pick back up and carry on with life.

The Mighty Contributor

Friday, February 14, 2020

For now

It's been 11 days since I last officially parented Sonzee.  The numbness of it all is slowly fading, the auto-shutoff mechanism that my brain so kindly installed is beginning to malfunction, and I am having more difficulty figuring this whole portion of the journey out without her.  Yet at the same time whether she is physically present or not, the whole mothering component apparently doesn't go away, it just changes.  Instead of managing her medications, calling doctor's offices and insurance companies, making sure her supplies are arriving and keeping on top of nursing and the billions of other items that I took care of for the previous almost 5 years of her life, my mothering has turned into making sure the pinwheel at her grave points the right direction to spin in the wind, organizing the rocks around her plaque and planning the perfect headstone and accompaniments for her plot.

I honestly never thought about what parenting her would look like after she was no longer here.  I didn't even know it was a thing to consider.  I didn't consider that I would need to find a way to continue being her mom, I didn't consider that I would begin to fear that one day there might not be anything left for me to do for her.  While I did wonder who would take care of her, who would make sure she was looked after, who would play the role of her mom, and who would hold her hand while she crossed the street, I reassured myself that she would not require her medication, physical assistance, or most probably even require supervision.  However, no matter what I tell myself, the innate mothering in me is having some difficulty accepting those facts.

I was only four years 11 months and 22 days into my special needs mom role.  I was finally feeling pretty confident in my ability to mother her.  I was finally feeling that "I got this" attitude because I did.  Looking back I remember those first days of the NICU, those first days of constant doubt, those first days of seizures, those first days after her CDKL5 diagnosis, those first days after every single missed milestone, and those first days after every answer the doctors' gave me didn't quite add up and I was left with doubt.  While I never fully accepted that she was meant to suffer, or that she had a CDKL5 diagnosis, I eventually accepted that my lack of acceptance was ok.  I eventually accepted that I didn't have to agree with the story she was sent here to tell, it wasn't my place. So I know eventually I will accept that I won't accept not mothering her in the same physical manner I will my other kids, but for now, I will give myself another 4 years 11 months and 22 days to even consider it.


The Mighty Contributor

Wednesday, February 12, 2020

Sonzee turns five

Dear Sonzee,

I am sorry I am a day late writing you a letter, but yesterday, on what should have been your fifth birthday was a really really "horrible, no good very bad day."  I wish there was a word in the English language to describe what I am feeling, but as of this moment, there is nothing sufficient.  I am still extremely elated that you are no longer suffering.  That is honestly the main focus I have when the times are really tough, just a quick reminder that you are not in pain, not seizing, and not locked inside your body, and the panic of you gone melts away.  As a consolation, all those years aba and I said we wish we could take away your pain and suffering and have it be us who feels it, well that is about where we are, and honestly, it makes us proud to be the ones to do that for you, but it puts the experience of your pain and suffering on an entirely different level, I am still so sorry for you having to go through it all.

I hope you were able to see we decorated your grave.  I placed Mayzie's pinwheel from her celebration of life by your name plaque, it brightens up the entire cemetery, well that and the giant red "5" balloon that I attached to the garden flag pole.  I originally wanted a new birthday burlap flag for you, but Amazon had a fail, and despite the two nice gentlemen at Amazon who heard all about the need to decorate your grave, they couldn't figure out where in Phoenix the package was, so, in the end, I brought you the house cupcake burlap and hung it, which honestly worked out for the best.

The rabbi told me after your funeral that your soul would linger in the house for a bit and then slowly leave by the end of shiva.  I originally asked him if I would be able to notice and if it would make me feel better, he couldn't answer that, thankfully having no experience in this specific department, however, I can now.  I continued to sleep in your bed after you were no longer here, I cannot explain why, but that is where I went every night.  I swear I felt you hovering over the bed the first couple of nights, which by the way, (didn't we discuss ema has a thing about that).  By Sunday night I wasn't being physically pulled to your room, and Aba and I got up to walk around the block on Monday.  I slept in your bed on Monday night, but last night for the first time in 3 weeks, I didn't feel the need.  I take it as a sign that you are moving through whatever the process really is, and I am thankful I have not held you back.

Noam sang happy birthday specifically to you in the car yesterday on his own, unprompted after we were about 1/2 way home from the cemetery.  I was able to catch it on video and it was so sweet.  He knows you aren't here, so while he takes every opportunity to find you in pictures and talk about you he hasn't run into your room searching for you.  I am a bit relieved about that honestly.  Your older siblings are working through it all similarly to aba and I, not really sure how to process it all, feeling your absence, but so happy you aren't suffering.  Laeya wanted to know if eating the ice cream made you wonder why you took so long to go to Gan Eden in the first place.  Don't worry, we are not giving Meena your bedroom no matter how much she has begged, and she does miss you.  Eventually, I have a great plan for your room so we all will have a space to come be with you, and we are probably going to keep your Rifton chair so you can continue to be an awesome goalie for Tzviki.

 I have been going through videos and pictures of your life to create a video for your celebration that we have in about 3 weeks, that process has brought such a smile on my face seeing how smiley and happy you were during your first year and a half.  I have to really sit down and figure out the specifics of the event to make sure we do it justice for you.  I am channeling my inner Sonzee bear strength minute by minute and I thank you for sharing some with me.  I hope you are settling into your new home well and that you are having the time of your life.  So many people reached out to me yesterday and wished you a happy birthday.  We have received so many notifications of donations being made in your honor, gifts, "thank you's" for bringing awareness and sharing your story, and Mimi and Miki even planted a huge avocado tree in their yard in your honor.  I honestly do not know how to properly thank everyone for all of their love and support, and I hope you feel the love wherever you are.

I hope your birthday was as spectacular as I imagined it to be for you.  I hope someone takes it as seriously as I do and you didn't feel like you were missing out.  We did have cupcakes and cake in your honor as we would have if you were here.  We miss you every second of every day and please feel free to send me signs you are doing ok (just please don't hover over the bed like your siblings do in the middle of the night).

With love always,
Ema


The Mighty Contributor

Monday, February 10, 2020

To Be Continued...

I started making Shutterfly albums in 2008 after Sam's and my honeymoon.  It was the first company I was told of at the time that allowed me to not have to go to the store to get physical prints of the pictures in order to make a scrapbook.  Since I love to document as many of life's events as possible, having a way to create an album from the comfort of my home was fantastic.  After our honeymoon, I continued to use Shutterfly for all of my picture needs.  My intention has been to document as much of our children's lives as possible so when they grow up and move out, they will have these books to remind them of their childhood.  Since each album to me is just a snapshot of a moment in our life waiting for the next album to pick up where the previous one left off, on the back cover of every album I place a picture with the words, "To Be Continued".

While the series of Sonzee's books will have far fewer volumes filled with pictures of her life here with us, there is no way that her story has been spoken for the last time.  There is no way that her impact here on this world in a physical manner has come to an end.  I know that her physical presence is no longer needed here with us for her purpose to be known, but I know that in her short time, she merely planted a seed for whatever her purpose was to be cultivated without her having to struggle alongside. 

As it was pointed out during her funeral in a quote by Terry Pratchet,  "No one is actually dead until the ripples they cause die away", and I realize I do not even know the depths to which Sonya's Story has sent ripples.  For a little girl who never spoke a word she has shared quite an amazing story.  She has positively impacted and inspired so many, that my level of pride and joy has jumped off the charts.  I really hope wherever she is she is able to see how many people love her, miss her, and are forever changed because of her, and because I know she has more to say, just as every one of my albums ends, this one will also include, "To Be Continued".





Saturday, February 8, 2020

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.


The Mighty Contributor

Friday, January 31, 2020

Lifetime

As parents, we do our best to soak in every moment we have with our children and make sure to give them as many experiences that we can possibly offer.  Mainly because they are only little once and because the years fly by so quickly, but deep down there is the fact that tomorrow isn't guaranteed for anyone. We provide them with social opportunities, enroll them in extracurricular activities, take them on trips, and try to provide the most caring and loving environment to foster a lifetime of happiness.  No matter the type of child being parented, the situations may need to be adapted, but any loving parent will do their utmost to fill those first 18 or so years of their child's life with what they feel is the best for them.  In return, the payoff is watching your child grow older while developing their own sense of self and eventually one day moving on to do the very same with a family of their own.

Unfortunately, as Sam and I as well as too many other parents to list have learned, sometimes the typical way of life just isn't what is meant for everyone.  The typical parenting experience is derailed and you learn to adjust the opportunities that are provided, but always, the opportunities are provided, always the love is given, and always you watch your child develop their own sense of self in a different sort of way.  It isn't always clearly communicated, it takes a lot of guesswork and supports, but, your child is still the person he or she is as an individual, but one who just requires some level of assistance.  Regardless, you spend your moments with them the same you would as any parent, loving on them, kissing them, talking to them, playing with them...simply, parenting them.

But then there are special situations.  The ones that are unfathomable, the ones that aren't at all able to be processed because they simply don't make sense.  They are the situations that result in an ending that defies the order of operations.  Sometimes, if you are lucky you get a warning, and you get to prepare, whatever that really means.  You quickly make sure to squeeze years of moments into the shortest time possible.  You spend all your time thinking of every memory you might regret not having because you know you aren't ever going to have the chance again to get to them and you find a way of making it actually happen.  You spend all of your time loving on them, hugging them, and kissing them, but all the while wondering, how on earth you are going to get enough to last the rest of your lifetime.


The Mighty Contributor

Wednesday, January 29, 2020

"Strength"

I dreamed of becoming a mom for as long as I can remember, and when it first happened in 2010 it was the start of something that surpassed any dreams I ever had.  I have theoretically become a mom 5 different times.  Each of my children is as individual as can be making my mommying experience equally as distinct.  From being a competitive dance mom to a hockey mom to a free spirited child mom to a special needs mom, and a slew of other descriptive titled moms in between.  I am and will always be proud of all of the different mom titles I wear, however, the one no one ever thinks they will ever earn, the one no one ever wants and yet the one that I am soon to be awarded is that of the grief-stricken bereaved mom. 

It was suggested to us that we begin to make plans at this point so that any decisions that can be, will be made in advance.  For everyone who has said "you are so strong", or "you are incredible", I hand you back those words, medals, and sashes.  Yesterday, I was not equipped with the appropriate amount of strength to get me to go "cemetery hopping".  Instead, it was my amazing sister who graciously volunteered without even being asked and Sam.  I gave my "requests" and they did their best to make sure they will come to fruition.  I say requests like these things have been sitting in my mind for a lengthy amount of time, but the truth is I didn't even know I even had them more than 24 hours ago. 

Watching my child suffer over the last 4 years 11 months and 16 days of her life has drained so much of me mentally and physically, I think my strength quota has been reached.  The last 4 years 11 months and 16 days apparently isn't going to earn me much reprieve in how the remainder of this story is going to be written.  There is not going to be any first day of kindergarten picture or any sassy turning away when she wants nothing to do with us.  There is not going to be any more "hooray for Sonzee's" or cheering over some almost met inchstone.  While I am extremely grateful we are getting to segway into this new chapter on our little bear's own terms when she is ready, everything our family has endured with her isn't earning us an alternative ending, so whatever strength might remain after all of this is said and done, I am going to need to write my own.


The Mighty Contributor

Monday, January 27, 2020

Just wish....

Sam's first car when we met was a 2001 Honda Accord. It was 2 door, greyish-silver, and had an Israeli flag bumper sticker on the back right side.   He was so in love with this car, although I had a different opinion.  The car had so many different issues, the timing belts needed to be changed, the spark plug wasn't doing its thing and then the radiator started to overheat.  He would try these little cheap fixes and I would tell him he was wasting his time because he was eventually going to need to get rid of it.  After we got engaged and we agreed to move to Arizona, he mentioned he was going to drive that little car 1300+ miles across the country.  I laughed so hard while I told him there was no way that his favorite car was going to make the journey.  He disagreed.

By Spring of 2008, he finally decided he should take the car to the nearest dealership, which was about 40 minutes away in Valdosta Georgia.  So together we got into the car and started to drive.  About halfway into the trip the car began to smoke.  We pulled over and the radiator (again) needed to cool off.  He was so used to "fixing" the radiator, so it came as second nature.  While I sat on the side of the road he got a ride from a nice older lady to the nearest gas station to get some water.  When he returned, he poured the water on the radiator, it cooled off and we continued on our way.  It was finally time, Sam knew it was time, he still would have rather held onto the car, but he did admit it was time, and so he let it go.

I couldn't sleep last night, and at 3am I laid starring at the ceiling when this story popped into the forefront of my mind.  So many similarities from this experience, however, instead of a car, it is our little Sonzee bear.  Her entire life we have spent trying to put putty in all the water holes that have presented themselves, albeit never fully successfully.  Eventually, you realize and accept there really is nothing that you can do to try and fix the problems.  No amount of interventions can compete with the fact that her body is telling us it is tired.  It is not in the, I need to lay down and take a nap type of presentation of tired.   But in the "I cannot regulate any of my bodily systems appropriately for things to function" manner.  It is beyond devastating and really impossible to have to accept that there really is nothing left for us to do, we really have done everything for her.  So, what is left for us to do, is to respect what her body is telling us, respect what she is communicating to us and respect this process as horribly painful as that really is.  So to summarize the only way I know how, I give honor to one of the famous quotes from Steel Magnolias, "We should handle it the best way we know how and get on with it. That's what my mind says, I just wish somebody would explain it to my heart."


The Mighty Contributor

Monday, January 20, 2020

Paths

Life in general with CDKL5 has always been a path filled with bumps, forks, and a multitude of signs all suggesting various ways to go, but ultimately no matter how the path is followed, the final destination will be the same.  In our house, we have two decision-makers, which means two people who despite sitting in a coffee shop on their first date laying it all out on the table discussing their individual fundamental beliefs, didn't quite get into the depths of the now relevant and extremely pertinent core discussions that have ultimately presented themselves over the last almost 5 years.  I mean in our defense, who even knows CDKL5 or unhealthy babies are even topics of considerations that exist when you are young and dating?  Who knew topics similar to "what are your viewpoints on abortion" really were benign compared to a lot of the line items that were in our unknown future?  Who knew that two people who I remember sharing the same beliefs with at one point could have completely different ideas of what "the best path" would ultimately be?  I often wonder if the experience of the actual decision making of the medically complex child path in other families is similar to how it is in our house; with two completely different viewpoints and opinions but ultimately two people wanting the best for their child while trying to honor eaches individual convictions all the while trying not to become another statistic of a failed marriage due to the additional challenges of living a medically complex life.

Ultimately, I wonder, are there really right or wrong deviations and decisions when it comes to walking the path?  I have read all these various quotes about paths and journeys.  Some suggest there are no linear ways of getting to the endpoint and that every path has multiple curves.  Others suggest no matter what the path, there is beauty in getting lost on the journey.  There is even a quote suggesting that there is no one correct path just the path that you choose.   However, the challenge in these cases is there are two you's. So which one is correct?  How do both people compromise on the journey itself when the simple concept of 50/50 means half full to one of them and half-empty to the other?  The same information presented is perceived in two entirely different ways, but supposedly, neither of them is wrong.  

I won't ever understand why it was Sonzee who was born with a mutated CDKL5 gene, or why there are many layers of complexity to her journey that have resulted in so many opportunities for us to have to be faced with not only typical married life drama, but the additional elements of how do we give our child the best quality of life while weighing our personal opinions on whether or not we perceive her as suffering and what to do or not to do if there is even anything to do about it.  In the end, I suppose there really is not a right or wrong when it comes to the journey itself, but what does seem to matter and what the biggest challenge seems to be, is being able to continue moving forward making decisions that are true to your own personal beliefs while trying to balance the fact that there is "no I in team"

The Mighty Contributor

Thursday, January 9, 2020

Crumbs

When my oldest was 16 months old I enrolled her in a gymnastics class in north Phoenix.  At the time I was 8ish months pregnant with her brother.  We began going on dates after her gymnastics class to a local coffee shop.  She got her cookie and chocolate milk and I, of course, some form of coffee.  When her brother was born he tagged along, first in a carrier, and soon as a member of our special time.  Eventually, my older two began preschool and my dates became with our 3rd and Sonzee in tow in the carrier or stroller.  3 years ago when our middle daughter began school, the dates stopped.  Sonzee wasn’t enrolled in gymnastics and while I could have taken her to a coffee place and drank coffee with her in her stroller, it just wouldn’t have been the same.

When our youngest became enrolled in gymnastics this past fall I was looking forward to having our dates.  It had been a while since I had a date with a toddler and I was so ready to start them back up.  Fast forward to this morning.  We have about an hour and 10 minutes between the end of gymnastics and getting sonzee from school, and boss baby is finally at the perfect age to have his attention focus on a cookie and chocolate milk for more than 5 minutes in a chair, so off we went on our date.  I snapped pictures, he picked out his chair, I was so excited to be sitting there with him, and he appeared to feel the same excitement.  Then I saw the crumbs.  Little tiny toddler crumbs on the table, on the chair, on the floor, just staring at me so I grabbed a napkin to wipe them up and then this emotional tidal wave washed over me.  Crumbs...the same ones I used to apologize for when we went to this same coffee location with my older kiddos and they were all over the place.  The same crumbs the employees used to smile off at me and say “don’t worry about it”, while they grabbed a broom and swept them up.  The crumbs that toddlers make but ones that Sonzee has never gotten to make.  Cue to the tears.

Now with glossy tear-filled eyes, staring at my son trying to not let the tears fall as I was wiping up crumbs in a coffee shop while trying to get over the emotions quick enough to enjoy the moment of actually being on a date.  So many more of these moments keep happening.  It's always dual-edged, the same thing I am not taking for granted fills me with dread because Sonzee couldn't or cannot do it.  The pain of it continues to get worse for some reason the older she gets.  Sure she can unhook her feeding tube and her stomach drainage and make a wet mess, but the reality is, she cannot and won't ever be able to make any crumbs.

The Mighty Contributor

Sonzee's Slideshow