2024

My hands hover over the keyboard, my mind empty of thoughts. I'm stuck, at a loss for words. This feels fitting because, since I started this blog in 2015, 2024 is the first year I've written only seven entries. The more I try to focus on finding words, the more tears fill my eyes, and that familiar discomfort in my chest grows.

Maybe it’s because there are no new words to share, no brilliance to offer, and nothing more I can say to myself that hasn’t already been said a million times since she died.

2024 marks another year that Sonzee never started and will never finish. There were no new milestones to celebrate, no fresh photos to share, no new moments to commemorate. We did, however, honor her with street cleanups and the completion of a new playground in her name.

2024 also brought more painted rocks for Sonzee, some of which have faded after four years, the paint and messages worn away. The cemetery continues to grow, with more people and more rocks scattered around. I wonder, when new visitors walk among the graves, if they know the rocks originated because of our little Sonzee Bear.

This year, Sonzee received more keychains and gifts from our family travels—perhaps the most since she left us. Keeping the top of her gravestone orderly has become more difficult, but I do it anyway.

2024 hasn’t made it any easier to answer questions about how many children I have. With confidence, I say “five,” but it’s the details that bring hesitation and inner conflict.

This past year, I’ve allowed myself to sit with my grief more often, though I still tend to suppress it, to my own detriment. I’ve felt more sadness, more emptiness, and more silence in my mind because of Sonzee’s absence. But I’m still uncertain what to do with all of it.

In 2024, I accepted that there’s no "fixing" grief. I came to terms with this in the same way I had to accept that a cure would never make Sonzee an active participant in her own life. I accept grief for what it is: permanent, ever-changing, and woven into the fabric of my existence. I accept that it will influence everything I do, every day. I accept that others, even family members, may never fully grasp the depth of grief’s impact. And I accept that there will always be a void—one that nothing can fill. It’s larger than everything else, and though it sometimes shrinks, it is never gone. It can swell at any moment, without warning, and consume everything. I accept grief, but I don’t like it.

2024 was the last year Sonzee should have been in single digits. It marked the beginning of “10 Weeks Until 10,” and I started leaving painted stepping stones at her grave. I hope, wherever she is, she’s able to step on them.

2024 is also the last year she lived longer than she will be gone. A concept my mind struggles to accept.

2024 was simply 4 years 10 months and 29 days without our little bear.

Expired

When Sonzee first died a close friend of mine whose daughter had already died told me “Randi, you’ve got 18 months before you aren’t allowed to grieve anymore”. We joked we should write a book about our time limit and things we should advise other bereaved parents to do during that allotted time. I think we chatted about it two times and that was it.

Through all my reading of grief books and online and in person grief groups I had heard there would be or it was at least referenced, that people would expect grief to end by a certain date. For 2 years on the grief journey I thought how I had been lucky I hadn’t really experienced any of the “negative”’comments, thoughts or insinuations. There were brief glimpses of idiocy presented to me, like the day after Sonzee died when someone told me I’d get over her death because her sister in laws cousins friend had lost a son to cancer and she had moved on so I shouldn’t worry; I’d get over it. I turned that into a joke during shiva with my closest friends with either them asking me if I was over it yet or me saying we shouldn’t worry because in a few hours I would be good to go.

A sprinkle of comments here and there would occur, but always during the first 2 years at least one person would ask me how I was doing and insinuate they were wanting to know how I was “truly” doing. Truly wanting to know how was I coping with the death of one of my children. Albeit an awkward question to answer, at least it was asked.

By the start of year 3 on this grief journey that question was no longer asked by those who are not true friends. Attending events seeing people I haven’t seen since Sonzee’s death or around that time, no one asked. Maybe they didn’t care? Maybe they didn’t want to “make me think about it” (ha! We can discuss that in another post). OR maybe, it’s simply that they didn’t even think about it anymore. 

It’s been 3 years 8 months and 17 days. I was asked one time during the last 8 months how I was really doing, and it was followed up with a “but aren’t you happy she is in a better place?” A statement that has nothing to do with how the death of one of my daughters still, “even” after 3 years 8 months and 17 days feels the same if not worse than it did on day 1. 

I realize every day how much life goes on. I get it. She died, people felt badly and then resumed their lives. People mourned her loss and maybe even a few still think about her, and maybe some even wonder how I am truly doing, but don’t bother to ask. It’s not fine, but at the same time it is, because I am here to explain, she may have died. Her life may have expired, my pain has not and it won’t ever. That’s ok because grief is just how I will continue to love her. I don’t need anyone to call and ask me how I am doing, I don’t need to have to dodge the uncomfortableness of others when I might bring her up. I am just here to tell you, grief is forever, so a true check in on all your bereaved parents shouldn’t expire.

4 weeks

Dear Sonzee, 

It has been 4 weeks since I last wrote you a letter. I am honestly a bit surprised because it feels like I missed so many more than just 4. Weeks 186, 187, and 188. Technically I could get away with writing you one during week 189 because that started just yesterday. 

These last 4 weeks have been avoided on purpose. I am entering the time of year where I'd rather not deal with your absence. Truth be told even though I don't send you the letters that write themselves in my mind, it is impossible to avoid your absence.  That is felt more and more every single day, but when I sit down to put my words onto this electronic paper, the tears fill my eyes and the weight on my chest becomes heavier. The breaths are hard to come by and it feels like someone has placed a 30-pound weight (well honestly it could even be 5lbs because we know I am not the strongest person) on my chest. The pain becomes difficult to ignore. It is the same pain that is always present, but I have mastered pushing it down and not feeling it. That is a benefit of it being 3.5 years since you physically left. 

The last 4 weeks included another CDKL5 child dying. A fact that I have tried hard to also ignore, because knowing another parent is on this journey makes me sick to my core. Me transporting back to the beginning is unavoidable when a CDKL5 death happens, so the avoidance of everything becomes two-fold.  

Today there was a meeting at work and the mom and I have followed our children's online journeys for some time now, so I said how it was nice to finally meet in person. She replied that she stalks me to read my journals, and I mentioned how I haven't written one in a while. I felt like I needed to share an excuse. I doubt she needed one. I am sure it was just for me to justify my actions aloud. It isn't an excuse per say either, it is more of facts. An excuse would be me saying that I don't have the time, or that your siblings have me busy, or work, or an endless list of reasons; because the reality is that I am making a conscious choice to not write to you. A sad reality, but the reality of life after your death, because it is easier to avoid than to confront the grief.

Over these last 4 weeks I did manage to visit your grave and clean it up while placing new rocks and items for you. I have recently come to understand that the grave really is meant for the grieving and not for the deceased. I used to go for hours when you first died to feel closer to you, and now I know that you aren't ever far from me so I dont need to go to feel your presence or to be a good mom. I know you are with me and I know that if you need me you will find a way to make that clear to me. Growth? I think yes. Painful? Yes because it means it's been that much time that has passed for me to learn another #lifeafterSonzee fact. 

Another #lifeafterSonzee fact, September begins my deeper grief depression. It signifies the start of the end of your life, or rather when I started to search for answers I would never find. It was the season I started to document all of your changes to build my case to prove something wasn't right, to attempt to prove that my gut was right and that something was going wrong inside of you. The easy thing to do would be to remind myself that it wouldn't matter if someone agreed or if I proved my gut earlier; but my body and heart wouldn't listen to my mind in any case, even if I told myself that until I was blue in the face. This is just how it is; this is just how it will be, and that is okay. This is just how it has to be.

Over the last 4 weeks I have been asked if I am still sad over your death. I have been asked if I am not happy knowing that you are peace. Yes, to it all. I am and will forever be sad over your death, and the only solace is that you are at peace, but it won't change the fact that children aren't supposed to die before their parents, healthy or not. That isn't how life is supposed to work. I will give g-d an out on the whole CDKL5 diagnosis and special needs, but I can't accept the whole death part. That part is pretty much unforgiveable, despite the whole G-d has a plan I don't know concept. There is no plan involving your death that I will ever be understanding of, even if in the end it makes any sort of sense. 

The last 4 weeks had one of your siblings ask who was going to make your bedroom when Mashiach (Mesiah) comes, one of your siblings tell me that a bridge was built and gotten over in regard to your death (and then eventually corrected to admit that wasn't the case), and a sibling ask to read their Sonzee and Me book to sleep at night. I won't say which siblings or if they were all different, but everyone is on their own #lifeafterSonzee journey, and I just get to be there to support them without my feelings interfering. I don't know what it is like to lose a sibling, and I make that very clear to them. I also tell them whatever they feel is ok and right. 

The last 4 weeks have had me spend more time at FBC. I tend to keep you a secret while I work. Not because of another reason besides that it isn't necessary to share. However, there are times when I feel it helps a parent or a nurse understand that I have the best intentions of any possible person when it comes to assisting with communication because I have been a parent and caregiver to a child with significant needs who also sent their child to school with a 1:1 nurse. It sometimes serves a significant purpose to share about your life and death. Thank you for everything you taught me and continued to teach me.

Anyway Babygirl. I know this doesn't make up for the last 4 weeks, but I hope you can forgive me for being in the place I am in terms of grieving your loss. I miss you beyond words. My heart wishes beyond words you'd come visit me in my dreams. 

Until next time.

Love always, 

Ema

"You look happy"

“Your pics look like your happy again a lot, and your family is happy”.

I had to tiptoe my reply gently as this was a newly bereaved parent. I know what they were searching for. I spent Sonzee’s entire life with parents of newly diagnosed children seeking some sort of hope that maybe their child would be the one to defy the odds while living with a CDKL5 mutation. I didn’t want to crush their dreams early on in their journey, I knew deep down after time went by as their child’s skills or lack there of were more obvious, they would learn the reality, (plus there was a (slim) chance I might be wrong).  When the medical interventions became more profound it would be more difficult for them to convince themselves otherwise, better let them figure things out on their own. Not every child with a CDKL5 mutation is affected as severely as Sonzee was, not every 4-year-old with a CDKL5 mutation dies, it just happened to be our reality. So, I didn’t need to throw negativity into their face.  As such is the same with newly bereaved parents. They come seeking some sort of hope, some sort of comfort that life will go on, something, anything that says this won’t be as awful as I imagine, forever, right?!

Don’t be confused by a smile and being happy. There are happy moments, and the smiles when they happen can actually be real, but there is always a dark cloud hovering close by. The happiness and smiles are momentary, almost as if reality has halted and for a split second I am living in the moment, a happy one. A moment that will fade all too quickly as soon as the recesses of my mind remind me that I buried a child. Almost 3.5 years later there are more happy days than sad ones, but some days it is still hard to breathe. There are times when the happiness gets smacked out of me like the wind being knocked out of your lungs after a big hit, and I find myself gasping for air. Happiness exists, yes, it does, I can give you that. But will you ever be as happy as you once were as you stood wrangling all of your children after whispering threats in their ears to smile for the family pictures? No. Will you ever be as happy as you were sitting at your children’s school events when all of your children were alive and you were brought to tears by extreme happiness and amazement that your child completed a milestone? No. Will you ever be as happy as you were at your major life milestones when you were a complete family? No.

You will smile again. You will laugh. You will celebrate all the milestones that are yet to come, and you will for those seconds actually be happy. But then the shadow of what your deceased child won’t be celebrating, or the reminder that the last time you celebrated “event xyz” it was for your deceased child will pop into your mind and the happiness becomes muddled. The happiness is split. At least for me it is. I get happy, but there is a max to it. I enjoy life as much as I can, I smile when I am happy, and when I laugh it is genuine, but the realty is, I buried my little girl, there is a max to my happiness. Everything is harder and simple things are difficult.

Are we as a family happy? Yes, our family of 6 smiles and laughs and has an amazing time. We appreciate all of the moments that come our way. But don’t let the smiles and the pictures fool you, because the reality is, we are supposed to be a family of 7, so we are missing the piece that makes us irrefutably happy. 

Life and death

Dear Sonzee,

It’s a little after midnight and it’s way past what my typical bedtime has been these last few months. My eyes hurt. It’s a combination of the tears I’ve suppressed, the ones that have managed their way out secretly, and the fact that it is way past my bedtime.

It’s hockey tryout weekend and while I was on a lengthy phone conversation with a mom of one of your brothers teammates, while also texting some others, aba walked in to tell me that a daughter of a family in the chabad community, died. 

While I’m continuing to talk with my friend and text about our current life happenings, hockey…and the drama that occurs with it, another child died. It’s a family in our community…one that probably even attended your funeral (I really didn’t keep tabs). I anticipated it to happen…as usual when a child has a rare diagnosis of any sort, especially cancer. Call me Debbie downer, I like to refer to it as realistic Randi. It’s also the only way I know how to process the death when it (undoubtedly) occurs. It makes the heart break “more tolerable” I suppose? 

My mind is mixed with numbness and intense pain. I’m conflicted. Am I crying over their daughter? You? My current status as a bereaved mom? The fact that someone else in this community will now understand my pain? Is it wrong if the tears are for you? Who are they for? What are they for? Why do children have to die?

I struggle. Do I attend the funeral? I can’t. I should. I want to puke at considering going to the same exact pavilion I sat under for your funeral and seeing another child being buried. But, how can I not show support? How do I support myself? Will it make it better? For who even? Which one of us? No. It won’t for either. We just both now get it. We are both members of this awful, shitty(sorry your siblings hear it all the time anyway) club that NO ONE WANTS TO BE PART OF. I just cant process this. 

Why?

I don’t get why children die. Why one of them was you. Why one of them is another child of someone I know. How does this keep happening??? 

I want to give her a hug while we both cry, because there might be some sort of comfort in that for both of us. But, maybe she doesn’t want a hug? Maybe she doesn’t want to process that there is an after part now that her daughter died. I hardly understand how I am alive still. But I am. She has other children, so she will find a way too. HOW though? How do we find a way? It’s not normal, it doesn’t make sense.

And then. Then life continues. Because, I continued my conversation about hockey and tryouts with a choked voice but I am an expert in covering up the emotions, so not enough that my friend knew I even got horrible news. Life continues because tomorrow your sister will have her girls pool party for her upcoming 10th birthday and your brother will have his last hockey skate of tryouts. That’s what happens. 

People die. Kids die. You died. But life…life some how, in some way, making zero sense of how life and death seamlessly merge together continues to go on…with a new normal…that constantly makes me pause and reflect at how surreal it is to continue living when your child does not. When you did not.

I love you so very much baby girl and miss you that much more!!! Please welcome Shaina with a big embrace and show her all you’ve learned. Keep her comforted if she’s scared or missed her home, and remember to always be safe and have loads of fun while you’re both pain free.

Until next time.

Love always,

Ema 

Dear Sonzee: January 18, 2020

Dear Sonzee, 

3 years ago today was Shabbat. You had spiked a fever and aba and I spent the day doing what we did quite often when it came to your care during that period, arguing over the plan.  The initial plan we followed when you first got your central line and ran a fever over 100.4 was a fast (4 min 21 seconds) ride to PCH ED. The secondary developed plan initiated by myself was no more hospitals. It wasn't a decision that was implemented lightly and while it was something that aba was not fully on board with, when you didn't need to go to the ED, he didn't argue the plan. But then January 18, 2020, happened.

The night before when you spiked your fever I casually ignored it. I figured aba wouldn't notice anyway, he isn't the one who usually identifies fevers until I mention something and then he attacks with the thermometer. I personally never need one. When he said you were hot I said it didn't matter because I was not taking you to the hospital.  There were multiple reasons for that, the first being that deep down I knew you weren't sick. The second reason was that I knew if I took you to the hospital they were going to do numerous tests, cause you discomfort, make you upset, and possibly kill you (or speed it up knowing what we know now). The third was because it was your sister's 10th birthday and due to the above I wasn't going to miss her special day. 

When you woke up with a fever Saturday the argument continued, except the one thing that aba always did was say that he felt should be done, but he wasn't the one who was going to be taking you. If he really wanted you to go, he would have taken you on Shabbat, but since he wasn't doing that, deep down I knew I could stand my ground. So standing my ground I did, but it would get more difficult the more signs you began to show that something was definitely not right. 

That night we kept you away from her surprise sleepover party just in case you had something contagious. We had told all of her friends that you had a fever in case their parents didn't want them to be exposed. Tonight I wouldn't share any of the pictures I took of you because I knew if it were me I wouldn't want those pictures posted. 

While I do believe that you were thankful for my choices on your behalf, there are random moments where I doubt myself and think about "what if". I remind myself your poor little body was exhausted and you were just a shell of the little girl you had been. My only goal for your life was for you to not suffer...I hope you have finally found your peace.

Until next time.

Love always, 

Ema

January 17, 2020

 January 17, 2020....

The 17th was the night Sonzee felt hot... It was Shabbat and I didn’t want to know what her temperature was... I figured we could ignore it... if we knew with her central line that it was above 100.4 then there would be the guilt that “we had” to go to the hospital... but we also knew we weren’t going to do any extreme interventions....we also had history on our side of her not actually being septic with her central line and we knew she had been potentially exposed to the flu at school so the hospital wouldn’t have done anything except tons of tests to confirm or deny that theory....  

We went with the preliminary diagnosis of the flu ourselves... except we would figure out within 48 hours no other flu like symptoms would ever present.....

January 17, 2021-2023

I should’ve known things were really off... but then again, I did. I had known for months. It was why I kept taking pictures and videos - to “prove” to someone, anyone, that she wasn’t herself.  

Again, what good would it have done to have someone agree with me? They would have suggested taking her to the hospital... I had already decided NO... Sam was not exactly on board but we always agreed on our hardline and we knew in certain situations it would come to crossing that line, so it was best to avoid that hard line if we knew it was on the horizon. So the official beginning of her end was on our doorsteps.

The next 17 days would be the worst days of our lives. I sometimes wonder how our marriage survived her life and her death and especially those 17 days…I sometimes wonder that about myself as well. I would spend the next week fiercely advocating on her behalf like I had her entire life, but in a completely different manner…it’s something I am proud of myself over to this day. I have zero regrets, and in the end, anyone who “doubted” me then, has praised me since…but the most important thing is that we honored her wishes, we did what was best for her, and I know deep down in my soul, we did exactly what she wanted.

Two Years

Dear Sonzee, 

Today marks 732 days since you left our physical presence. It feels like an entirely different lifetime ago because that is exactly what it has been. An entire 2 years that didn't include you with us.  An entire 2 years that we have had to learn how to be a normal family, a task I am unsure we will ever accomplish.  It has been 104 weeks and 4 days learning to navigate being a family that used to have a child with special needs.  It has been 2 years of no longer having to keep a hospital bag packed (although I never unpacked it, even after the flood). Two years that we have no longer needed to coordinate vacations and weekends around nursing schedules, planned admissions, and random 100.4-degree unexpected fevers.  It has been two years not counting seconds and minutes while you seized, two years of no gj tube changes, no central line challenges, and no arguing with insurance companies.  For two years, we have driven by Phoenix Children's Hospital and have not been admitted to the 8th floor with you.

I wish today would mark some finality of the situation, but it doesn't, in fact, it is the opposite.  Today, February 3 marks the end of another 365 days and the beginning of another 365 days that will pass me by without you here.  A day that will forever be the worst day of my life, but yet (what I imagine to be) your best.  How unfair it is that I cannot be there to cheer you on and celebrate all of the Sonzeestones you have finally had the opportunity to accomplish.  I hope you have someone cheering you on front and center, and that you feel the cheers that I promise I would have for you if I knew about what was going on.  I absolutely hate that I have missed out on 2 years of whatever it is you have become and been able to do.  I think that is probably the cruelest part of this all.  We all miss out on life with you and being able to celebrate with you.

For the last two years, countless people have said they couldn't imagine the situations we have had to experience, especially us having to bury you.  I sometimes wonder myself how I have lived through it because I cannot imagine it either.  For four years 11 months and 23 days we lived an insanely unimaginable life, and since you left, we continue to live the life that every family fears they could be.

I am still trying to figure out who I am with the pieces of me that were left here without you.  I anticipate it will take a minimum of two more years to even start to sort that out.  What I know is that it will pass me by with a lengthy blink of the eye, and I will be left wondering how it has been so long but yet still feels like yesterday that you were being held in my arms.  I am thankful, at year two I can still feel you in my arms, and feel the softness of your cheek against mine.  I am so thankful that at two years I can still remember all of the details of the exact moment I last saw you forever.  

My Sonzee bear, it has been 732 days since you were last here with us physically, and missing you is an understatement, but there has not been a moment in the last 732 days that we have not carried you in our hearts and minds.  No matter the number of tears that fall from my eyes because of how much I miss you, I want you to celebrate this day.  Two years ago today you were given freedom, a gift I never could give you.  So please celebrate doing everything you are now able to do (and if that includes coming and visiting me for the first time in 2 years, that would be greatly appreciated.

Until next time my little bear!!!

I Love you and miss you so so much!

Love always.

Ema

Beautifully Horrific

It wasn't until Sonzee that I gave death much thought.  Even the thought I gave was nothing more than simply the potential that it might occur.  However, at some point early on, within the first year of her life, when people asked me if there was a life expectancy, I would matter of factly reply there is little information specifically, but we know we will most likely be burying our child.  Maybe some would cringe if they knew I said that?  Maybe some would even argue that fact?  Maybe they could have been right?  But, maybe I said because it was simply a protective mechanism my brain set in place to attempt to cushion the looming possibility? Regardless, I would say in our case it has proven to be an accurate statement.

Spending days, weeks, and close to entire months in the hospital at a time let us know that Sonzee was truly not a fan of that environment.  It can be argued that no one ever is, but in our case, it was so clear we vowed that no matter what, we would never let her die in the hospital.  When she was a year and a half old we did our first family stay at Ryan House, which happens to partner with Hospice of the Valley, and that is the only place we considered outside of our home that we would let her go to die.

I had never imagined the specifics of her death, even in the life we lived, there is no way to possibly imagine what death might look like, but I did envision peace and comfort regardless of location.  I had always assumed it would feel awkward to let her die in our house and then continue to live in the same space.  I thought it could potentially feel...morbid.  I had those heebie jeebie vibes over the thought of passing by a space that was filled with death.  Then, the unimaginable became our reality, and it didn't seem so scary, it felt right.

The 11 days Sonzee spent on hospice were truly a gift despite the reality of the situation.  We were able to make sure we did what we could in a short amount of time so there would be as few regrets as possible.  I asked anyone who lived through a similar journey or who worked at hospice of the valley to tell me everything they did so I could ensure we did it.  In the end, we did the best we could to ensure we could look back and not have too many sentences that could start with I wish. 

Whether the decision for hospice is because it is in the best interest of quality of life and or to eliminate the suffering.  Whether the decision is one that is made on behalf of a loved one or the loved one themselves makes that decision.  Whether the decision is one made due to circumstance.  Regardless of whatever the reason may be that a loved one ends up on hospice, it should be made very clear it is not giving up, it is not killing, and it is never a choice that is made out of anything other than immense love. It is the most difficult, painful, beautifully horrific experience that a family can encounter, and it should never be spoken about as anything other than that.

One Year

Dear Sonzee, 

Today marks 365 days that have happened without you here.  I am unsure exactly how all of this time has actually gone by.  It's hard to believe a year ago you were our 4-year-old daughter and in 8 days you would be turning 6.  The concept of time has become this challenging foreign concept for my brain.  I wonder to myself if things will ever change if it will one day revert to some kind of comfortable, but I already know the answer is no.  Nothing about life continuing without you here will ever be comfortable.  It will just be what it is, whatever that ever is.

Nothing really makes sense.  It doesn't make sense that you were born with a spelling error on one of your 30,000 genes and it caused you to endure an entire lifetime of hardships and accommodations.  It makes less sense that after all of those hardships and attempts to create an increased quality of life for you, that you would then have to die.  There isn't even anyone to blame, I feel like that makes it even worse.  I can get angry, and I can cry, and I can experience every emotion under the sun, but I have no one to say hey, this was all your fault! I don't know if having someone or something to place the blame on would make me feel any better, but maybe it would give me a place to direct my feelings?

An entire year has gone by and there is no celebration.  There was no party, there was no cake, there were hardly even any smiles except the ones that were either forced or just situational because I try to surround myself with funny people.  There is something just so I don't know what about a day so significant that doesn't have an appropriate name or something extravagant to represent it.  I was thinking on my drive to you today how weird it is that today is a day of remembrance, and it will be yearly, but yet it isn't a day that I am eager to count down towards.  It isn't something happy I will ever look forward to.  It is actually a day I would prefer to dodge altogether, and a day that will come around every 364/365 days for me to focus extra on something that honestly never leaves my mind on any of the other days.

Today, February 3 will always be a day that represents a larger gap from the last moments we ever had together.  For this year what summarizes the 52 weeks and 2 days since I gave you your last kiss is that my mind still talks to you, and my heart still looks for you, but my soul knows you are at peace.

No matter the number of days that will continue to pass, my love for you will only continue to grow and my yearning to one day give you a cuddle and kiss on your cheek will only get greater.  Until next time my little bear.

Love always, 

Ema

February 3, 2020

Day 11 of Hospice

Dear Sonzee, 

The stroke of midnight would begin the longest day of our lives, but your shortest.  3 hours ago we had our in-home shift change and nurse Paige came back to the house after going home to shower and change.  We anticipated you would have already passed away by now, but you were still physically here.  She would sit with us and rotate with moral support since she was officially off the clock.  Auntie A and I stayed by your side doing the medication rotation.  At this point, it was so often neither of us could really sleep.  You continued to breathe and I will leave it at that.  It isn't the type of breathing that makes you feel comfortable hearing or watching as a parent, but it is the type of breathing letting you know that it might end soon.

I forced myself to take a shower at some point.  Aba and I left the room for a bit on purpose.  Auntie A whispered in your ear and even called the time at one point only to say it was a false alarm.  So many tears had fallen I could have sworn my tear ducts would dry up, they hadn't, and they didn't.  

By 2am we sent nurse Paige to sleep in our room, she needed to sleep in case she would be working in the morning.  We told her we would wake her up if anything changed.  She was able to get in a few hours of sleep.  By 3:30am I lost my cool and called hospice.  They came out to listen and to remind us that it could take any amount of time, that you were in charge, and that this really is the awful part but as long as you were comfortable there wasn't anything that could be done.  You were comfortable, I know that...but to be honest, I was far from that.  

We took turns holding you, laying with you, and making sure you knew we were there.  Maybe that was the problem?  I am sorry if we gave you reasons to hang on for so long.  I am sorry if we made you linger when you were ready to leave.

In the morning your siblings decided to stay home from school.  Laeya had been torn about the decision because her class was going to have an event at one of her teachers' houses and she didn't want to miss it, but she also didn't want to leave you.  I could sense her struggle.  By noon we sent her and assured her if anything happened we would send Auntie A to come to tell her.

Our palliative care social worker and nurse came by around 11:30/12.  We all were sitting in your room.  I for the first time in 2 weeks laid you alone on your pillow and sat with my back against the wall.  No one was holding you anymore, we let you rest, but we were all there.  Noam went to take a nap, Meena and Tzvi were just being themselves somewhere else in the house, I am not even sure what they were doing.  The conversation was not focused on you, we were just laughing and talking.

At 1:04pm aba ran into the room.  He climbed into the bed and I remember being slightly annoyed that he was claiming the space directly next to you when I specifically had moved away.  I can't explain why little things irritated me, but they did. We resumed our conversation, and the social worker and nurse were scheduling their next visit.  The social worker kept looking in your direction, I chose to ignore what her eyes were communicating, but I knew she noticed some sort of change.  I had secretly as well, but I just kept focusing on the conversation. 

I looked at you, I looked at the clock, and I remember aba's panic.  I reminded him that you had done the breath-holding multiple times over the last 2 days (but I knew this time what it meant), he began to cry, but I felt a feeling of instant peace mixed with relief that your pain, suffering, seizing, and complications were finally over. At 1:08pm as your baby brother napped in the room next door, as your 2 older siblings were being themselves, as your biggest sister said her part in her class performance that was caught on film at the same exact moment, as life was literally continuing on, and you were satisfied with how it looked from your view, you took your very last breath.

I hope and pray the amount of love we gave you up until your last breath is enough to stay with you for your forever and beyond.  Until next time.

Love always, 

Ema

January 31, 2020

Day 8 of Hospice

Dear Sonzee, 

Today would be your very last Friday and very last January you would ever live during.  Every morning this week before school your siblings all came to give you one last kiss, just in case anything would change during the day.  We asked each of your siblings what they wanted in terms of being notified if something happened, so we knew their wishes.  We made sure to ask them so they would know and understand we respected whatever their wishes would be and aba and I didn't want to force our own thoughts and wishes for them onto them.  Every morning since Monday they would come to your room and jump into bed.  I took so many videos and pictures, I am so happy I did.

Today would be the last walk you took in your stroller.  Aba was adamant he and Nurse Paige take you out, I waited in your room for your return.  You were not in the most comfortable place today, and after your walk that had not really changed much.  It was so horrible to watch you be uncomfortable.  Today was the beginning of the most hellish weekend of my entire life, there is really no way to explain everything that you endured your entire life, but watching you die, while we gained peace and comfort for you, was absolutely the worst experience of my life.

You had another bath, I think we did them at least daily as part of our routine and to help with keeping you comfortable and ensuring that you were always in clean pajamas so you felt your best.

Today I asked myself if hospice was really comfort-care.  I know it was, and that it is, but today you were so agitated I didn't know what to think.  There was a point today where I doubted everything we were doing.  I struggled with wondering if you were just hungry and not actually dying and we were killing you.  I considered throwing you into the car and driving as fast as I could to PCH for them to fix everything and make you better.  I felt like I was going down one of those water rides that resembles a toilet, I was just spinning.  

I was so upset about all of your seizures today.  I couldn't understand why you started to seize again and I HATED that they were making you uncomfortable.  You were on 10ml an hour of Pedialyte and everything seemed so miserable for you.  We had exhausted every medication in the hospice arsenal and nothing seemed to be working, it was absolutely horrific for both of us.  I am so sorry things got so out of control and I hope you don't remember how awful today was.

I had not googled one thing about dying or the end of life, and it wasn't until after I started to doubt every choice we made that it was shared with me that everything occurring was normal for the end of life.  I could have hurt every person who knew that but felt they were protecting me by not sharing things until they happened.  I made a vow at this point to make sure any of your friends' parents who enter a hospice journey are at least asked if they want to know all the details beforehand so they have some warning. It feels like the least I can do in offering support because it really isn't one of those things that you want to just learn on your own.

Today was definitely one of the most horrible days, but this weekend would prove to me that it could always get worse.

Until tomorrow.

Love,

Ema

January 30, 2020

Day 7 of Hospice

Dear Sonzee, 

Today was your last Thursday.  You can guess that again today was filled with an abundance of hugs, cuddles, kisses, and love for you from so many people.  On today's list of squeezing in a lifetime of memories into a small amount of time, it was a family hand mold.  I was searching for hands mold kits on amazon two days ago when I came across a kit that was for an entire family.  I did a moment of hesitation and then it landed in the cart and then into the house.  I had a lot of naysayers, (echem, Aba), but I was determined to master this challenge, and not to brag, but boy did this mold turn out to be the most amazingly beautiful item our entire family will ever create together.  Thankfully pop-pop took a video of the majority of it, and it one of my most favorite videos of all time.  So much chaos, laughter, insanity, and screaming that it's hard to watch it without laughing and smiling the entire time.

Today was the day that I arranged how we would be giving your GJ tube syringe to those who would be handling your care after you died so they wouldn't struggle with removing it from your body.  Really it was Mrs. Zupnick thankfully who took care of it all, all I did was send her a picture of the tube itself so she could explain it best.

Today your rash came back.  It was on your cheeks mainly this time.  Bright red and also puffy.  I was really wanting to know what the rash was, it didn't matter, but I needed to know.  Your eyelids also began to get puffy again, it was so confusing to me because you had next to no fluids going into your body at this point.  In the end, I think we attributed this rash to the liver failure you were in, but nothing really ever confirmed that theory.

I had been really good about screening all my messages, phone calls, texts, etc., but today one of those random ones fell through my screening.  I stupidly thought because the person who reached out had a child diagnosed with CDKL5 it would be a message of comfort, but sadly, it was the complete opposite.  They went on to share with me that they knew exactly the position we had found ourselves in, except, she was selfish and decided to keep her child in the hospital so their child is alive, but next time they would do hospice.  It was at this point that I stopped caring about comforting others, or if I sounded like a b*tch, and simply wrote back that "this wasn't a choice, but thanks."  I no doubt assume they meant well, but sometimes (really 100% of the time) less is more, and not saying anything is better.

Aba and I spent months discussing choice regarding placing you onto hospice or not, in the end, our conversations were pointless because you made the choice for us. I will always be thankful to you for doing that for us.  I just wish people wouldn't say stupid things not understanding entire situations.  I wish people understood that hospice can be a choice that is made when your backs are up against the wall and there are no other options besides hail marys.

Today was the day we were listening to relaxing music during the day and Uncle Mathias looked like he had fallen asleep sitting against the wall, eyes closed, fully relaxed, only to abruptly jump up and literally run out of the house like Forest Gump.  I wish I had saved the camera recordings from the house and your bedroom so we could watch that moment forever on sad days.  I think we laughed for literally hours and days over this.

Today was the day your body for some reason would begin to seize, something it had not done since January 17.  I was so angry, I was so upset.  I didn't tell anyone about the first one that I saw except nurse Paige saw it as well.  Eventually, we told Aba.  It was really disappointing.  I had no desire for you to be seizing while you were actively dying. That was not how things were going to go.  Your body was so tired and weak it was even more horrible watching you seize than it had been your entire life.  Seizing was your claim to fame, you seized like a champ, you perfected that art, I wouldn't let it go down with you half hazardly being able to seize.  I was really angry with G-d over this.  I just wanted you at peace and in complete comfort.  That was not on my list of things allowed during your last days on earth.

Today my eyes and face would start to turn a permanent shade of red myself as the tears were challenging to keep at bay.  I stopped allowing as many visitors from this point forward because I wanted everyone to remember you awake and in your typical Sonzee manner.  I had thought it was already bad, but this weekend would prove to be some of the most difficult days of my life.

Until tomorrow.

Love always, 

Ema 

                                       

January 25, 2020

Day 2 of Hospice

Dear Sonzee, 

Today was Shabbat.  Auntie A came over in the morning.  She would later tell me that it was on this day that she realized the gravity of the situation.  The hospice nurse came to check on you and was so respectful of Shabbat.  He answered all of our questions the best he could and anything he needed to find out he went outside to call about and came back with answers.  At one point after he left, he ended up driving back to let us know some other information.

You finally started to look more like yourself today with much less swelling.  Thank g-d the medication worked.  The negative of that is for the rest of your life it would mess with our minds that you were actually doing better.  We would have to remind ourselves that while yes you looked significantly better, the reason for that was the significant decrease in your fluid intake and the lack of feeds.  The feed part was the most challenging concept for aba and me, but like hospice explained multiple times, it is like when you are sick with a nasty virus and you have no desire to eat, if we made you eat it would be worse.  (Aba did occasionally try to increase your fluid rate, but would quickly realize your body just couldn't do it anymore).

Today hospice of the valley came out to do your fingerprints and some hand and foot molds.  The full circle experience was that one of your nurses from PCH happened to be the person to come and do those molds for you.  I wonder if she felt some sort of completeness to be able to do these for us?  For me, it felt comforting and fitting to have someone who had cared for you be the one to take your last foot and handprints. Today was also the day that Rabbi Rodal came over to do the priestly blessing for you, it would be the last time you would hear it.  

After Shabbat ended I gave you a bath, you were so tired, you slept through it.  Mrs. Emily and Mr. Andrew came to take our pictures.  My only regret is that I didn't bother having everyone wear anything matching.  My brain was saying just keep everything real.  I wish I would have at least had you match your sisters one last time.  With a disaster in the background of almost every picture, we took our very last set of professional complete family pictures by our friends.  They are the pictures I will cherish forever, and will probably be the last set I will ever hang on the walls if I can ever bring myself to even do that.

Today was a successful day but would be another day closer to the day you felt we were ready for you to be able to leave.

Until tomorrow.

Love always, 

Ema

January 23, 2020

Dear Sonzee, 

Today you swelled oh so much more, despite our best efforts to limit your intake.  Nurse Paige gave you a bath...I feel like I recall you not being uncomfortable during it.  You had so many snuggles today. We still didn't know what to tell your siblings, we let them give you hugs and kisses and spend as much time as they wanted because we didn't know how much time you had left.  They made you pictures that said, "feel better".  They assumed that because we had not taken you to the hospital that meant you couldn't be that sick.  Being unable to find a middle ground (again/still), Aba and I continued our adamant differing opinions and desires, until Dr. Wendy made the call to send out a hospice nurse along with our social worker to assess the situation.

That was a really tense situation.  They both arrived and I could read their faces completely.  I knew they agreed with my assessment.  Our social worker for sure didn't get paid enough to offer the amount of support she did for us.  She did as good of a job as anyone could trying to talk with aba, but aba just wasn't having it from anyone.  He was not giving up.  He couldn't understand even now that it wasn't up to us...we had done everything we could, it didn't matter, you were calling the shots from now on.  As an olive branch, I asked Nurse Amanda to come and do a set of labs.  I was vehemently against the proposed idea to take you to PCH only to have them tell us "there was nothing to do" and then have them admit you to hospice and come back home.  Over my dead body was anyone taking you out of the house and into that ER to end up right back where you were.  I stated that really loudly...I am sorry for all of the screaming and fighting that happened right next to you.  I bet you wanted to sit up and tell us all to shut up.

After the visit, aba was still not able to agree to hospice, so I was told by our social worker that she did put in a note that if I called hospice myself there was approval at this point to admit you.  The hospice nurse told Sam that he needed to do something, either take you in himself or get you admitted to hospice.  You were swelling just too much...something needed to be done to make you comfortable.  You didn't complain, but I am sorry if you were in any pain over our inability to be a parental unit.  I can't imagine the amount of swelling you felt was comfortable at all.

In the evening we accessed your port and nurse Amanda did your labs. By nighttime, your swelling was getting even worse.  You couldn't clear the fluids from your lungs.  At 2am after aba and I cried many many tears, aba called to admit you to hospice himself.  I think we both cried ourselves to sleep if we even slept?  From that point on I wouldn't leave your side. I whispered to you every night onward that you were such a brave and strong girl and whenever you were ready it was okay to leave.  We still hadn't told many people.  It would take me 2 more days to be able to post about it on your Facebook page to let everyone whose lives you touched know that your time with us physically was limited.

Until tomorrow.

Love always, Ema

January 22, 2020

Dear Sonzee, 

Today the few people who were aware of the situation going on all checked in on you. Everything was essentially, "the same".  I went to work today.  It would turn out to be the last day I would physically step into FBC for work in what now has been an entire year.  I was perplexed over your rash and one of the para's at West Valley son's had a rash randomly also so I clung to the fact that maybe, just maybe, what you had was just some random virus.  I played the "what if" we went to the hospital game in my mind. What if we went and at least received confirmation that it was not any of the viruses on the PCR swab.  What if we went and they said there was a way they could help you.  I kept this soundtrack to myself.  I had to appear like a bull to aba because he was playing this game aloud as it was so I couldn't show that I was considering these thoughts or off to the hospital you would have gone.

Deep down, I knew.  I knew you were not sick.  I knew the interventions PCH would have done, would have been with your best interest as a doctor to do, but I also knew in your current state that would require interventions that crossed our hardline and there was no guarantee they would reverse what had already begun and then you would have died at PCH.  We promised ourselves and you that you would never die in the hospital.  No matter what he had to do, it was home or Ryan House, that was the final answer.

You looked worse today in terms of swelling.  Your feed had now been off for close to 2 days.  You were on Pedialyte, but we kept having to lower the rate or your lungs would fill with fluids.  Aba was against lowering the rate, soI let him take over your pump.  I couldn't keep having you choke.  He would keep the rates as high as possible for as long as he could before you would show signs of coughing and or choking.  I wanted it off, I couldn't bear you coughing, choking, and essentially suffering any more than you were.  It was a horrible place to be.  We were in touch with all of your doctors, we were receiving guidance, but we had not officially admitted you to hospice.  They were there to listen to both aba and I give our perspective and wishes, but ultimately when aba was asked, he wasn't ready for "comfort care".

I wasn't ready to have your death sped up in a hospital.  I knew the outcome.  So for the first time in your life, I stood my ground solidly.  It was not easy baby girl, but I knew I had to for you.  I was done humoring everyone to prove what was happening.  I didn't need to be told "you were right".  I needed you to be as comfortable as possible, in your familiar settings, with your people, and no PCH restrictions of who could see you.  I didn't need to humor anyone on your behalf anymore.  So I dug my heels into the ground and held firm.  It would get harder tomorrow.  Tomorrow it would feel worse than the last few days had...who knew that it is essentially how every day onward would turn out to be.

Until tomorrow.

Love always, 

Ema

January 21, 2020

My dearest Sonzee, 

Today is one of the hardest days to write about.  It isn't like any of the upcoming recollection posts are easy, but there is something to be said for finalizing a decision and moving forward because otherwise you are just stuck, which would be how it was today.  Today a year ago I dropped your siblings off at school and drove over to FBC and sat in the parking lot.  I was torn on whether I should work today.  If it wasn't the flu that you had then I wouldn't have panicked over potentially exposing other medically complex kiddos.  I was really conflicted on what to do, so I reached out to Miss Jaime and she agreed that I should stay home until we knew.  Phew! That removed a lot of the guilt I felt over not delivering speech services, but the safety of other children in your position was something I have always felt extremely strong about.  You know my feelings on "allergies", so the potential of something deadly walking into the halls of FBC on my clothing made me feel sick.

I drove home.  Meena was having an evaluation at Madison Elementary, so I checked on you before I picked her up to take her. You were in bed the entire day.  Today was one of the last days I would get into an insurance argument over medication of yours not being covered.  (PS: They finally called to tell me it was ready to pick up 2 days after you died).  I had little to no patience to deal with anyone trying to tell me "no you couldn't have the new nasal rescue med" that Dr. Jarrar had just prescribed.  I spent literally hours today calling every pharmacy in the valley and speaking with both Aetna and Mercy Care.  FINALLY, after Dr. Jarrar changed the medication to a different nasal rescue med, PCH worked it out.

Today a year ago your father deaccessed your port and forgot to put in the heparin.  (Ironically, it would not really matter, but more on that in a few days).  He worked it out with Nurse Amanda, and eventually reaccessed you and gave you the heparin and deaccessed you again.  I am so sorry for all of our mistakes that resulted in you having more pain.  Your lips were so dry, they were bleeding and cracked.  It didn't make sense, you had been "sick" before (just never actively dying).  By the afternoon the lightbulb clicked in my mind to call the dispatch health service Corrine's mommy always talked about to come and give you a flu swab.  Aba didn't understand why it mattered, me, the type A lady over here NEEDED to know.  I might have lied to the woman on the phone and told her you had every symptom of the flu because when I initially said you didn't have any, she said you wouldn't be given the swab.  I said you were home with aba and maybe things had changed.  I texted Aba and told him what to say when they came.

By 3pm with a lot of fighting between aba and myself, and discussions with hospice Aba said we would be admitting you to hospice.  I relaxed a bit but didn't know what it really meant except that we knew you needed someone to help support our decisions and you in any way possible.  By 4pm the decision was reversed.  I wonder what our social worker thought of today and the next 3 days.  I know you had to be aware of all of the chaos occurring.  I apologize to you about that.  It had NOTHING to do with you...it was aba and I and our disagreement over the same outcome but not being sure how to get the same outcome with our different ways of thinking.  Ultimately, we both just wanted the best for you, whatever it was.

You hadn't peed much today, we started to increase your fluids...that always worked historically.  But, historically, you weren't dying.  Your swelling got worse over time.  I was on sibling duties today, driving everyone to their activities after school.  By 6:30 Aba called to tell me it wasn't the flu.  I remember being in the car, I remember the immediate lightbulb that went off in my mind.  It took me an entire 2 minutes to replay a conversation with Dr. Wendy in my head from when you were a baby and I had asked her, "how would I know if you were swelling and dying"...she said "you would know", "the fluids have nowhere to go and they just flood the body".  I knew what we were dealing with. It wasn't the flu, you weren't sick (but I would continue to go down a list of potential maybes).  

By the time I got home from the last activity, it was around 7:15pm I walked into your room and asked everyone what the dispatch health person said about your rash.  No one understood what rash I was talking about.  It was on your cheeks, your hands, your legs.  It came out of nowhere, obviously between the time Nurse Paige left and the dispatch health people left.  Dr. Kelly crossed off all of my ideas.  We were left with my only option.  You were officially dying.

We went back and forth with hospice multiple times.  It was horrible.  I felt so lost, so alone. I was too afraid to talk about it on the CDKL5 support page because years earlier a similar situation happened and it turned into an awful ordeal.  People don't understand.  In their defense, they just can't until they see it themselves.  I didn't want to be told: "I was giving up".  It was obvious this was not my decision.  This was your body communicating it was tired, it was sick, it was unable to heal, it was shutting down.  Your father couldn't wrap his brain around it.  To be honest, I couldn't either, BUT someone had to be your voice, someone had to respect the situation, plus, I would have forever to deal with my emotions, so while you were here I was determined to just focus on the situation and the facts.

By the end of the night, you still had a fever, you were on oxygen, your heart rate was elevated, you were so very swollen, and I said the words to Dr. Kelly, "I am wondering if this is just her body shutting down".  We would stay the next 2 days at a crossroads between hospice and essentially the land of nothing.  Your father and I didn't talk, really, we hardly even looked at one another.   It was a dark and lonely place to be. It was tense, the house was essentially falling apart.  Your siblings knew you were "sick", they came to your bedside every day.  We didn't tell them anything more than you were "sick" at this point.  It hadn't even been 2 months since Saba died, we couldn't tell them you were dying just yet, especially when aba hadn't come to terms to deal with it either.

I am just sorry there was so much turmoil in the decision, in the air, all around you.  We only ever wanted you to be comfortable and at peace. I am sorry it took us a few more days to sort our emotions out enough to best help you.

Until tomorrow baby girl.

Love always, 

Ema

January 19, 2020

Dear Sonzee, 

Today, a year ago, the questions began to flood my mind, but overall I wasn't overly alarmed.  There was some confusion within my mind because there were no other symptoms besides a ridiculously high fever that we couldn't get you to break.  We did round the clock fever reducers but your temperature fluctuated between 100-103.6 and you felt frozen.  Mrs. Zupnick asked if your toes were purple, and how blood flow was, I remember you were paler than any other color, but again, nothing overly alarming.  I texted Dr. Kelly, she went down the list of symptoms and I crossed them all off.  We considered starting you on Tamiflu just in case, but we both decided that since you had no other symptoms besides the fever and other viruses were going around, it was best for you to not have another med that was just going to be a crapshoot. 

You were "blah", but honestly so much of the last six months that would have been exactly how I would have described you the majority of the time anyway.  We let you stay in your bed and just rest.  I googled the timeline of flu about 600 times and it wasn't making sense why you only had just a fever on day 2.  Ironically, I was actually feeling relieved that you hadn't started with a runny nose, cough, or any other symptom because I was going to assume that meant it wasn't the flu...but also I didn't exactly consider it to be death.

Your seizures stopped along with the start of your fever, so whatever it was we knew your body considered you sick...regardless if it was just the way your body was handling stress or a real illness. Today you rested...but tomorrow...tomorrow is actually the day that my mind started to wonder...it would still be another 2 days until there was a shift in my thinking...

---

I often wonder what you must have been thinking or truly feeling during your last days.  I know deep down we made the very best choice to keep you home.  I have zero doubts in my mind with the information that would soon follow that everything we did was not only in your best interest but absolutely the right answer.  My heart breaks the same regardless of those facts.  I won't ever be okay with you having to endure all you did.  Still, even as peaceful as we attempted to make your last days of life I wish your ending could have been different...less chaos, less pain, and less confusion (so we could have possibly done better for you).  

Until next time.

Love always, 

Ema

Breathe

I should be finishing up my ridiculously overdue work, but my mind just can't focus.  My heart is winning this tug of war with my brain and there is really no point in trying to convince either otherwise.  There is just so much pain weighing on my chest.  It is a combination of heartbroken for myself and heartbroken for one of my closest friends who is inevitably going to understand this post in a completely different manner within the short weeks to come.  There is nothing uplifting, positive, or really even hopeful to share with someone about to face something so absolutely tragic, but as she mentioned to me that she felt like she wouldn't ever breathe again, but finished her sentence with  "but, clearly you are proof that you do".  Since the superhuman in me seems to have gone on vacation, I admitted that sometimes it is really as impossibly hard as one can imagine.

The truth is if you haven't or don't have a child who has a terminal diagnosis you really can't imagine, because your brain is extremely fascinating in that manner, and it just doesn't allow you to even try and comprehend something so outlandish.  If you do, well you almost can imagine it, but that thought makes you physically sick, so you lie to yourself and say you can't imagine, mainly because it is too painful to consider, but also because even though you have a decent idea after living through what you already have, there is a part of you that truly just cannot fathom what imagining really means.  Again, it is one of the brain's greatest gifts, relish in it, because one day you won't have to imagine.

There is no amount of preparation that can help you come to terms with the reality that your child is dying.  There is no amount of comfort care that makes it at all feel comfortable.  There are no easy decisions.  There are doubts, there are fears, there is internal bias, there is judgment, and there is sheer and utter panic. After living one hell of a roller coaster your only exit is to go and ride something similar to the Tower of Terror.  There is nothing that comforts the reality of it and the concept of hope, if there is even a shred of life left in that word, changes drastically.  It becomes hope for being able to survive, hope for being able to get up each day, hope to be able to fake it through the days, and hope to simply be able to breathe.

Marked complete

Every once and a while I go into the backend of Sonya's Story business page and scroll through the posts I have yet to react to the comments of or mark as completed.  It is usually in the middle of the night when my ability to sleep is far enough away that I am just starting to be aware of the burn in my eyes.  The type A person in me hates to see the red notification alert and the number of how many items remain.  Inevitably I get antsy with scrolling by date, mainly because it makes me feel like the task is insurmountable when it takes me 20 minutes to get through whatever the current month is, tonight it happens to be October.  I then decided to start to type letters and have smaller lists to mark complete, but didn't give the letters I typed much though and began with Jan.

I worked through some from January 2018 (I know, I am really behind), then 2019 (I had forgotten how bad that month was), and then naturally, because it was January, stumbled across my post about hospice.  If I could explain the feeling that consumes my body when it comes to certain flashbacks, it would still most probably not do it justice.  It's an immediate chill complete with this prickling sensation that overtakes me, it then strikes really hard at my chest and travels up into my head and leaves me feeling like I was punched in the chest but mixed with this coldness that penetrates my core as if I was damp and sitting in 40 degrees outside.  The waves of chills continue for a bit; and all the while I continue to read through the hundreds of comments I never could previously stomach.  That is a mixture of heartache and appreciation.

Gosh, this journey has been so unfair.  She was never even given a fair chance, it makes so frustrated for her, so sad for everyone who loves her, and just heartbroken in general.  I am grateful and thankful for how her living journey ended, I couldn't have dreamed up a better scenario...except for one where it never needed to even be a consideration of a dream.