Tuesday, September 29, 2020

34 Weeks 1 day

Dear Sonzee, 

The last week has been another tough one. Yesterday was Yom Kippur and the book of life was sealed.  I can't figure out how it makes me feel to know last year you weren't written in it.  Your cause of death determined and your fate essentially written in stone.  I distinctly remember praying that if you were not inscribed into the book of life that you be taken peacefully.  I am grateful that at least that request was honored to its fullest potential possible.  Besides the fear of the unknown, one of my biggest fears was you suffering in your death.  Thankfully you never did, or at least never appeared to, so I hope that was the case.

Both your sisters decided to compete for number one injured last week.  Laeya fractured her hand, and Meena somehow removed a chunk from her eye.  We see the specialist for Laeya's hand tomorrow, and Dr. Cassidy squeezed us in the same day to take a look at Meena's eye (more proof there is a g-d-hehe).  He made a comment about how it didn't need stitches and I honestly for a moment chuckled and thought he was kidding until I realized he doesn't joke, eek and phew.  She is on eye meds for a week and then drops for the entire month of October.  During Meena and Noam's spring appointment Aba let Dr. Cassidy know you left us, but it was the first time I have stepped foot into that office since you last went.  I ran into a parent of a kiddo I worked with last year at FBC west, she and then Miss. Monique both came over to talk to me.  The more I slowly begin to venture out, the more I will have to remind myself people haven't seen me yet in person to give their condolences.  It's one of those moments where it makes me swell with joy that you meant so much to people and they haven't forgotten you and want to let me know that, paired with can I hide behind sunglasses in a corner and not draw any attention to myself.

34 weeks.  How has that even happened?  I had been thinking the last couple of days how your siblings haven't mentioned too much about you.  Noam did scream for us to bring him his "Sonzee and Me" book the other night, but the other three are pretty quiet.  Then yesterday Noam did one of his bite down on dumbo while he shakes his body moves that he thinks is funny and cute and Laeya looked like she had seen a ghost and told him to stop doing it.  He of course being Bossy Baby thought he was being super cute, so did it again, to which she said "stop, you are reminding me of when Sonzee had a seizure and it scares me".  I knew immediately what he was doing, so I told him sternly to stop because he has done it in front of me a few times and I also DON'T LIKE IT ONE BIT.  Maybe in another lifetime it would like a cute 2 year old just squeezing his hands and body, but if any of us never again see a human shake it would still be too soon. 

I officially booked our first family pictures that won't have you physically in them.  I think the we are doing the next best thing to having you in them.  I am almost getting excited to have them taken and to see them.  I haven't decided if I will put them throughout the house, but baby steps.

Anyway my love.  I can't believe this weekend it will officially be 8 months since you were last here.  We miss you beyond words.  We love you SO much!

Love always, 

The Mighty Contributor

Thursday, September 24, 2020

Happy 5th Birthday Corrinne

Dear Corrinne, 

Today is such a special day, it is your 5th birthday.  So many of Sonzee's friends have turned 5 since she has passed, but for some reason, today, your birthday is the one hitting me the hardest.  Maybe it is because you were the only friend we had come share in her mock 5th birthday party?  Maybe it is because of the parallels in yours and Sonzee's journey?  Maybe it is because I haven't let myself fully grieve over Sonzee never officially turning 5 and I was so afraid for your family that they would end up like us and today would be happening in a completely different manner?  Maybe it is because I personally feel so invested in you turning 5 that I am a mixture of relieved, ecstatic, and beyond grateful that you have made it to this milestone?  Maybe it is because I know that you being at Bear Pines somehow means Sonzee is celebrating with you and it feels like life is coming full circle?

You are such a special girl to so many.  We have been so blessed to have you and your family in our lives for 4ish years.  Your mother is one of the few people in this world that I can and have shared my darkest fears and feelings with and who has been there to help me feel almost normal the last 7.5 months.  She is for sure your fiercest advocate and a primary reason you are able to celebrate in all of your glory the amazingness that is today.  Sonzee was so blessed to have met you in FBC's Friday group, it was because of your story that we finally took a tour at Ryan House.  You and Sonzee shared a knack of making your (same) GI doctor experience firsts with your insane dysmotility...but you, my friend, continue to just travel along with a divalicious smile, painted nails, beautiful sassiness, and a requirement to travel with a mini fridge.

I am just so thankful that you honored us by accepting the invitation to Bear Pines for your special day. I hope it is your best birthday ever, I don't doubt for a second that you will be and have been spoiled beyond comprehension, and rightly so.  I hope you know how much your life has mattered to ours.  On your 5th birthday, we wish you a year of few hospitalizations, no new diagnoses, calmness, health, happiness, and amazing memories to be made with your friends and family.

Sonzee's Family

The Mighty Contributor

Tuesday, September 22, 2020


During our last grief group, the question was asked, "how are you managing your grief?".  These questions don't always yield a cookie cutter answer, I suppose that is the exact point of why they are asked.  Some people volunteered to share their responses, I had been thinking about my response wondering how exactly to frame it.   I wondered if my answer was going to be right. Knowing that whatever my answer would be, is the only right, but yet not convinced.  Then it became my turn.  I mentioned how I blog, I had forgotten or rather at the time didn't realize that me posting my daily throwbacks was also something I had been doing as a method, and then I said what I consider the biggest way I have been managing my grief...by avoidance.

I can think back to all of the amazing grief support books I engulfed myself in immediately after she passed.  I can see the words written stating how letting yourself fall into the grief eventually gets easier.  How it is better to allow yourself to allow the grief to happen when it presents itself because if not it can eventually be more challenging to push it down, and then you are hit by a tsunami rather than 6 foot waves.  I remember thinking about how I will make sure to feel it always and to deal with it as it comes.  It is comparable to all of those things you tell yourself you either will or won't do when you first become a parent.  If I had said openly to anyone on this journey that my intention was to never let grief suck me in I am sure they would smile and nod and think to themselves, "ya okay".  I can now remember every time I have reminded myself over the last 7.5 months of these facts when I force myself to swallow the grief up and close my eyes in my best attempts to squash it.  I can see the words written on the page every time I tell myself nope, not now, don't cry, later, now isn't the time.  Avoiding has become my "management".  It is honestly so much easier to act like everything is fine than acknowledging the reality.  Trust me when I say, the pain is far too horrible to let it take over at any point.  No, I don't want to deal with it.  Yes, it is easier to lie and pretend everything is fine.  

It becomes this endless grief version of "if I give myself a cookie".  If I admit that she is gone, then I have to admit that it hurts.  If I admit it hurts that means I have to allow myself to cry.  If I allow myself to cry that means I have to admit that this pain and the reality is real.  If I admit that this pain and the reality of it all is real, then I had to admit that she isn't coming back and that this is going to be forever.  If I admit this is forever, it is too much so she can't be gone, there is nothing to mourn because she isn't not here and therefore I don't have to cry and I don't have to feel this horrible pain.  To admit to myself at only 7.5 months into this journey that it is going to be like this forever is way too much to accept.  So for now, I acknowledge we are no longer a physical party of 7, and I acknowledge that I am not an active member of the special needs party, but as far as really managing my grief...avoidance of the realness of the situation feels much much easier.

The Mighty Contributor

Monday, September 21, 2020

33 Weeks

Dear Sonzee, 

For weeks, essentially since right after you passed I type in "countdown timer" to make sure I am writing the accurate heading.  You would think since it is just the following week I wouldn't need that confirmation, but each time I type 02/03/2020, 1:08pm, and check the box that I want the countdown to include weeks, days, hours, and minutes.  It almost mimics a pregnancy countdown, except there isn't going to be an end at 40 weeks.  

This weekend we celebrated Rosh Hashana.  I ordered a beautiful flower bouquet in your honor and it sat with us at the table.  I moved it to the counter now in front of your yahrzeit candle holder that still remains on the counter.  I had some flowers from our last Shabbat at Bear Pines in there last week, but they finally needed to be purged.  I ordered a bunch of 24-hour votive candles inside red holders and they came today.  I will use those moving forward for all of the times we light a candle in your honor.  I hope Saba likes red because he will get one by default.

I started to order winter clothing for your siblings.  Bubbie and pop-pop got them their jackets and what not with their help.  It is really exciting to be preparing for an additional season to just "Phoenix".  I did have to google clothing for winter.  I know it is technically early, but our Bear Pines neighbor told aba that sometimes it can start to snow in late October.  It is still so crazy to me that we live less than two hours away and the weather is that much different, but as a comparable it is currently 54 there and 84 in Phoenix.  The warmest day there is Thursday this week with a high of 80, otherwise, all the highs are in the 70s and the lows in the 40s.  We all have the same fall break this year, so we will be heading back.

Auntie A has purchased some fun new work items and we will soon be having some custom mugs and what not for Bear Pines.  I love her desire to play because it keeps benefitting Bear Pines.  I am wondering if I should just leave a card with her etsy info randomly around the house to send some subtle messages to guests.  She has really helped everything in my mind come out perfectly. 

Anyway, I cannot believe it is another week without you here.  Remember you are loved and missed.
Until next time.

Love always, 

The Mighty Contributor

Wednesday, September 16, 2020

32 weeks and 2 days

Dear Sonzee, 

I am sorry I am late writing to you.  I feel like this past week was one of those filled with so much chaos but yet in the end, there was an overwhelming sense of peace.  Bear Pines is officially open for business.  I say it with italics because we have our first guests staying next week, but the website is not 100% ready for sharing.  Aba and I spent 5 hours together finishing everything up this past Sunday.  The painting portion hadn't even been started, so Aba is going to drive up before Rosh Hashana starts to see it in person and bring back the 3 loads of bedding laundry I ran out of time doing that I brought back to Phoenix.  (I am really pushing hard here for a new washing machine...he hasn't exactly taken the bait yet, but I sense it could be on the horizon).

It feels amazing to have checked off essentially all of the items on the inspection report.  We also took down the eyesore of a shed in the backyard and it will be converted into a playhouse for your siblings.  It is close to 500 square feet, so it is almost a mini house itself.  I will be purchasing a matching wind chime for their porch in your honor.  I mentioned to a friend I would most likely cry when everything was all finished, and as I took a look around Sunday I did just that.  There are just so many emotions.  I know you are with me when we are there.  You influenced literally every nook and cranny, and yet this house wouldn't be ours if you were still here.  It is so difficult to put into words everything that is my mind regarding that simple fact.

I am on week 6 of direct therapy this week and during the entire virtual school year, not one kiddo on my caseload had seized during a session, until yesterday.  Just about every single child I saw yesterday, did.  I don't know what to make of it.  I mean essentially absolutely nothing because it had nothing to do with me, but I did joke with Auntie A that since I was in your bedroom for all my virtual sessions, you wanted to ensure I remembered how that was you all the time.  I didn't even know how to feel...my heart breaks for every single parent, and all of the kids.  I wanted to scream through the screen how I can relate to whatever they are feeling, I still have this need to say "ME, OVER HERE, I GET IT, MY DAUGHTER DID THIS ALL THE TIME.  I LIVED THIS LIFE, I WAS ONCE IN YOUR COMMUNITY."  Instead, I just stare blank-faced, wondering if at some point I will have to suddenly turn off my screen because it reminds me too much of that life, the one I am for all intents and purposes, not really part of anymore.

On that note, I emailed one of your doctors today to say I missed her.  Weird huh?  I had composed an email so many times, but always deleted it, today I finally pressed send.  It's so hard to have not only lost you but lost so much of the life we lived for close to 5 years.  Close to 5 years that were literally an entire lifetime for you, but for us just a small but yet large portion.  These doctors were intimately attached to us and knew us on levels that some of our friends won't ever.  To have lost our frequent visits feels like adding salt to an open wound.  It seems I am still trying to figure out my place, I think that is going to be an always, forever, and from now on sort of a deal.  I received a reply within an hour (I am honestly not one bit surprised), shared it with aba, but I can't reply.  I tell myself it's because it feels almost awkward to reply so quickly, but I think the reality is that I am stringing it out so the conversation lasts another day?  

Someone asked on Facebook last night about doing the clay hand molding.  I was so excited to share our experience, I even included the 39-second video pop-pop took for the comedy.  Of course, that resulted in me watching those 39 seconds on repeat for over an hour.  It was just 4 days shy of us officially having to say goodbye, but looking back at it, it was such a fantastic experience and will always be such a great memory.  The screaming, the laughing, your siblings being absolutely ridiculous, you being a fairly decent sport considering, your entire life and our life with you captured perfectly in 39 seconds.  Although, I do wish pop-pop kept the camera rolling...there were definitely some gems of verbal exchanges that occurred only after it was shut off...but I am so grateful for what he did record.

Anyway my love.  My heart misses you beyond words.  I hope you can feel that and the love from down here wherever you may be.  I hope wherever you are is treating you better than we ever could. Until next week.

Love always, 


The Mighty Contributor

Friday, September 11, 2020

What's there to say

I have been part of the CDKL5 support group for over 5 years.  For many years I was extremely active, sharing our experience with Sonzee and Sonzee specific related information with no problems.  The older she grew and the more involved she became I found participating to be extremely emotionally draining.  I always hesitated because those who were new members would eventually find their footing and until they did, they didn't necessarily want to see a 3 or 4-year-old potential version of their child in Sonzee.  Maybe that was my personal take because children presenting like Sonzee don't necessarily reek the hope the newly diagnosed parents are seeking.  And now...220 days since she passed away, I represent everything they fear, so what's there to say?

This week a new mom introduced herself and I am assuming my 30-day snooze needs to be reset because I saw it.  This week for the first time in months I scrolled down the comments and read everyone introducing themselves and their child.  Then for the first time in I don't know how long I clicked into the comment space, but then I sat there, rereading the introduction of the mother, reading all of the comments, tears filling my eyes and left wondering, what's there to say? 

What is there to say besides, I once had a daughter who went through all of the same exact challenges as your child and despite the hope you have, the reality is, at some point, they might finally be at peace, but that means you are part of the other CDKL5 group of bereaved parents?  There is no way to share her journey without stating the obvious fact, she isn't here any longer. Who wants to hear that?  Because I don't even want to say it.  

Really, what's there to say?

The Mighty Contributor

Wednesday, September 9, 2020

31 weeks 2 days

Dear Sonze, 

It's been less than a week since I last wrote to you, but I didn't want the week to slip by.  It's funny, even though it is never that long between my letters to you, I find my mind fills with thousands of thoughts I have to sort through that are all related to you.  This week one of your friends is having a challenging time.  It seems whenever this has happened since you have been gone my brain and my heart have such a difficult time.  I can't seem to figure out how it makes me feel or what I should be feeling.  I can't figure out what I am thinking, I can't make any sense of any of it and I don't even know how to try and start to.  Then it starts to feel like every CDKL5 sibling of yours is having a rough time and both my mind and heart go into shutdown mode.  It becomes too much.

The further into this journey of navigating life without you, the more obvious it becomes that time is not going to change any of this.  It is just going to be something that passes by and something that makes things more confusing.  Supposedly the benefit to time is that I will learn to adjust in terms of compartmentalizing or simply figuring out various ways to live with the grief, whatever that means?!  I am still waiting for someone further on this journey to tell me that pain stops, that the overall hole all throughout me will become filled, and that the challenges of life without you will disappear.  (sidenote: I probably wouldn't believe them if they said those things anyway, but I will wait)

Someone shared with me a Facebook post about family pictures from their friend who has sadly also lost a child.  I wanted to just post it myself and say "this".  I was hoping this person was behind me on the journey so I could maybe hope that the fact that our feelings are exactly the same wouldn't make me feel slightly defeated.  Sadly for me, this mom is further along, so while it feels reassuring to know my feelings are similar to others in the same position, it wasn't uplifting to know that the feelings I have most likely won't go away.

This week I mentioned to one of your friend's mom's that I have zero knowledge of 5-year-old Sonzee seizures.  The statement struck me after I said it.  Firstly, how was it that you didn't even live 5 years when at times it felt so long?  How is it that I gained so much knowledge in just 4 years 11 months and 23 days?  How is it that life goes on for everyone your age and you will forever remain "8 days shy of 5"? How is it I still have so many tears?

Despite it all, I still wouldn't take you back to have you seize "just" one second more or to have to be hooked up to a plethora of tubes or to have to take mega doses of multiple medications or to be limited by and in your body.  Your body is where it needs to be, it's just indescribably painful that that place isn't with your siblings, aba, or myself.  We love and miss you beyond words.  Maybe we can meet in the space between?  

Love always, 

PS: It is supposed to be 33 tomorrow with a high of 58 and Ema does not have her puffy jacket everyone makes fun of her for wearing in the 70s so if you could be gentle with your breezes that would be much appreciated.

The Mighty Contributor

Thursday, September 3, 2020

7 Months

Dear Sonzee, 

Yesterday marked 2 years since we gathered with friends and family and saw your swim spa lifted 100s of feet into the air by a monstrous crane that blocked our entire street in order to place it in our backyard.  The spa still remains, but 7 months ago you left it for only us to use.  I haven't entered it yet once.  I tell myself maybe I will take up swimming laps, sit in it to relax, or maybe go inside to be with your siblings when they go, but I just can't, I am unsure if I ever will.  Aba made sure to take you in as much as possible during your last week, I wonder if I should've let him take you just one more time?

When I think back to those last few weeks with you, it was such a balance of fighting against time but letting you rest and being as comfortable as possible.  I think we did a good job? I am relieved 7 months later there is no doubt in my mind we did what was best for you.  What doesn't feel any better at all is that we had to make any of the choices we ever had to for you and that you aren't here with us.  I wish I could explain how much I truly do believe that you are in a better place, but simultaneously wish you had a different mission that didn't require you to suffer and then leave us so quickly.

7 months.  In just 2 weeks we enter into a new year on the Jewish calendar.  One you won't have even been in for a second.  That is a challenging concept to process.  It seems more difficult to swallow than entering into a new month.  We are filling out a 1/8 of a page memorial text for you and saba for the Yizkor book.  It was difficult to figure out what to say. I will admit Aba and I made some jokes in the process.  We couldn't exactly write "hope you're doing well", or "we are so proud of you", so we stuck with "In memory of".  I am honestly relieved corona will keep me from going to shul because I am still not ready to even just sit in the back and listen to that service, but I do need to refresh my red candle stash.  

Don't forget you are forever loved and incredibly missed.  Whenever I am ready, I hope you know where you can find me.  I miss you beyond words little bear.

Love always, 

The Mighty Contributor