Monday, August 30, 2021

82 weeks

Dear Sonzee, 

Another week has gone by, making it 82 weeks.  I feel like maybe things are calming down?  Or maybe it is just that things do not feel so chaotic and my post to you is on time so it feels like I am back on track?  Who knows?  

We spent our first full week in our temporary home.  It really is a beautiful space, but knowing we will be moving again within the next month feels exhausting, especially with all of the holidays coming up. I didn't get a chance to intercept the yahrtzeit candle holder before they packed my desk area, but Mrs. Zupnick picked up a beautiful one over the summer for us so I at least have that as a stand-in.  I went back to the house two times over the week and each time my eyes just filled with tears.  The boxes that had been packed were taken away, the damaged furniture is gone, the house is almost just floors and walls.  12.5 years of construction projects and making the home ours, essentially gone.  I walked to your room, but it was just so hard to go inside, I took a quick picture of it amidst the chaos.  Aba ended up taking down everything off the walls yesterday, he said it was therapeutic, but to me, it seems similar to picking out your gravesite, something I was just incapable of doing.  I know you aren't in the room anymore, but it's where all of our memories are of you...something we can't ever do again.  

I initially thought I would go and sit on the floor of your room after everything was gone and have a good cry, but as I consider it more, maybe it is just best if I never walk into that space again.  I won't know if I will regret that decision until it is too late, but if I use the motto I did throughout your life...and death process, I will just make the best decision I can at the time with the information I have and be confident in it regardless of the outcome.  At this point, my gut says I shouldn't see your bed and chair be removed nor should I see the space without either of those things present.  I picked you up out of that bed and carried you out, I can't go through it (again) with the last places you physically ever were. 

We finally got up to Bear Pines this weekend.  It was amazing to be back there.  It's only been ours for a little over a year, but it's familiar and a constant in this chaos right now.  We laugh as Noam now names the houses, "New York house", "Dallas house" (The Howard's), "Flagstaff home", "Phoenix home", and this one hasn't been named just yet.  He makes us sound like we are super-rich people...Poor guy has been through so much in his 3.75 years.

We went to a butterfly release yesterday.  I am trying to be more open to signs, so much so I have purchased a ton of books about being open to them.  It just feels crazy sometimes to attribute things as a sing, because of course there could be another reason why something happens.  We were given a butterfly to release specifically in honor of you and then they released a final butterfly for all children who had died, and it flew right into Meena's hair.  Then he/she was held by Laeya and then every time we tried to release him/her, she/he flew back to me or back to Laeya or Meena.  It literally walked around on us until it was time to leave and Laeya placed it on a leaf.  I could say maybe there was something wrong with it and it couldn't really fly away, or I could be open to the fact that maybe it was a message from you. There are so many sayings related to butterflies and death, that if I allow myself to be open to it, while maybe it was a coincidence of the situation, it very well could also have been you sending me a message that no matter where we will be, you are always with us.  I mean, this butterfly could have flown into anyone's hair and hung out with any of the other families, but it came directly to Meena, and we once had a grief activity where we wrote down something we wish could tell you and Meena mentioned she would tell you that she saw the butterfly.  I didn't know anything about you two and butterflies but putting it all together makes more of a sign than a coincidence.  Thank you. 

Anyway baby girl.  I will let you go.  Please stay safe and healthy.  Your brother has his first scrimmage this week and a tournament this coming weekend...please come if you can.

We love and miss you!

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, August 24, 2021

81 weeks and 1 day

Dear Sonzee, 

I feel like this was one of those "longest weeks ever" types of weeks.  It took us close to the entire time to find a rental for the month and we are debating what we are going to do after this month is up.  We found out the damage is pretty rough, which we knew, but now we know more.  My, well, really it turns out it was aba's too, so our worst fears came to fruition and we have to remove the furniture in your room. Your bed, the bookshelf with all of your stuff, that horrible Ikea chair that I absolutely hate and didn't understand how your nurses never complained, the walls...they all have to go.  It is a lot to process, more than aba and I really can, so we continue to push it off. I am sure in next week's letter I will tell you how having everything taken out was a close to second to the day I had to walk you out of the house to never return.  The fact that the last place you ever laid and the only room you ever knew will be gone along with you, is really honestly way too much for us.  It is bringing a lot of serious conversations to the table (that we were avoiding).  My logical brain says it makes zero sense to replace your bed or replicate your room, you aren't here to use any of it and what is the point.  The emotional part of me says to keep it all despite the damage.  The logic will win, but the emotional is not going to recover.

We spent the weekend out of the house and it was nice to escape the noise of the fans and the chaos of the house.  I have your clothing in a box now, so maybe I will reach out to those who I have been in contact with to make quilts.  We have one, it is absolutely amazing, but now I want every article of your clothing made into a quilt for your siblings as well.  Truthfully I can't really look at the first one that was made because it makes me cry, but one day I know I will, and it has set the bar really high for the next quilter.

Tzvi had his team hockey party Sunday, I am really excited over the new colors! You would have looked adorable in all the purple, silver, and black.  I have my boots ready to go and new sweatshirts on the way!  I am really excited for him and all that he has in store this year for his hockey growth, make sure you pop into a game or two or send some of that awesome juju!

Anyway my love.  I miss you a ton and am starting to be more mindful of the signs you are sending me. They may not be what I want per se, but I am starting to acknowledge they might actually be from you, it is just tough.  

Stay safe and healthy and have fun!

(oh, and ps: make sure you tell uncle happy birthday!)

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, August 17, 2021

80 weeks and 1 day

Dear Sonzee, 

80 weeks...and one day, my eyes squint as I wonder how; my heart hurts as I dare to wonder why.  These last 6 days have felt like they have been an eternity themselves, sometimes I wonder what role if any you are having in all of it, I struggle to figure out if and what you are trying to communicate, much like during your life.  Last Thursday night Meena, Laeya, and I returned to our grief groups.  I really missed mine.  I am one of the furthest along in terms of physical distance from the death date, but in terms of the journey, at this point, I feel like I won't ever be graduating.  According to all of the books I have read there will be a day that I will look back and tell the 'me of now' that one day I will learn how to continue to move forward.  I will keep waiting for that day.   

We were supposed to go to Bear Pines last weekend, but when Friday rolled around my energy levels and ability to cope with grief and life were impossible.  We did a quick family vote and 4:2 meant we stayed in Phoenix.  Ema has flown off her rocker completely and Meena and Noam now have their own baby kitties, Bella Nicki and Bailey Nina.  They were temporarily being housed in your room while everyone adjusted, so I cleaned up your room by putting away all of the clothing for your potential clothing quilts and moving your car and stroller out of your room.  We woke up Shabbas morning to the entire house being flooded.  Aba and I are more annoyed at the inconvenience because after burying you, very little can actually be worse.  My tears were of the thought of what will happen to your room when they do the official moisture checks. What about your bed?  What else of you are we going to lose?  Luckily all of your important items were away.  Aba found a handprint father's day gift from you in a bag, but thankfully your handprints are still intact and just the year and one word were blurred.  The cabinet was soaked so your blankets on the bottom shelf were wet, but they were cleaned and dried by Saturday night. The hardest loss currently is your hospital bag that I have never unpacked from the last time you were in-patient.  I started to unpack it when I realized aba hung it up on my closet door not wanting to tell me, but knowing I would realize on my own when I saw it.  I saw my hospital socks, a pair of leggings, and a shirt before I completely lost it and decided I can't unpack it, not yet.  I won't ever repack it again so I can't unpack it.  For now, it remains on the hook until I don't know when?  

Aba initially said this flood is an omen and it is time for us to move.  I told him I can't and won't leave you so we aren't going anywhere.  I am left wondering if this was a message from you telling us that we need to "start over", and that we need to move forward?  I know you would totally be on my side for renovating the house, but honestly, my energy level and ability to take on this type of project right now is similar to your bone density level...in the negative range.  Maybe that is why it is happening though? Maybe it's to keep me busy so I keep pushing on? Just another thing to do to keep my mind busy and not fall deeper into this grief pit?  Not sure it is really going to be helpful?  I am torn on if this means we should repurpose your room, nothing feels right, I am so utterly confused.

How have you been doing? I haven't asked how you are doing or what you are up to. Do you have nice friends? Do you get to see saba? What do you do every day? Is someone taking care of you? Are you scared? Do you feel safe? If you can somehow answer anything, just let me know if you are truly doing ok.

Anyway my love.

Be safe. Know how much you are loved and missed!

Until next time. 

Love always, 
Ema



The Mighty Contributor

Wednesday, August 11, 2021

79 weeks and 2 days

Dear Sonzee, 

I am so sorry I have fallen behind on my weekly posts and posting picture throwbacks of you.  I don't want to burden your peaceful soul, but ema is really struggling lately.  I was talking to Mimi's mom today and admitted that New York sent me "backward" on this crummy grief journey.  I say backward, but really it is more that I am cycling back into the whole denial concept of you actually being dead, which I think happened because I wasn't visiting your grave as much.  Now everything is significantly harder to deal with.  I have your soapstone butterfly to honor another 6 months of you not being here and I can't even bring myself to go to your grave.  It breaks my heart on so many accounts. I am so sorry. The same has occurred with posting those throwback pictures of you each day.  I used to look forward to doing them, but now all I see when I open google photos and type in the date is there are 2 years without pictures of you on that day and I can't bring myself to scroll down to the years you were actually here.  

This last week we were visiting Harper's family in Dallas.  It is always comforting to be around them, I am sure you remember how amazing they all are. We went back to Six Flags this year, it was another first time without you sort of deal.  I keep managing to survive these first times.  Overall it was as good of a day as can happen in ridiculously hot temperatures in an outdoor park with your siblings.  It felt like one of those movies where my mind flashed back to where we stopped, adjusted your fan, and made sure you stayed cool or sat out of the rides.  I was almost relieved that Noam was too short because he was the perfect excuse to not go any of the roller coasters, but that used to be your job.

After driving back the 15 hours straight on Monday I went to work on Tuesday.  It keeps ringing in my mind that I don't know what school you would have been in so I don't know what to put on your "first-grade" rock.  It also doesn't compute in my mind that you would be going into first grade?  It doesn't make sense, you never even started Kindergarten, you never graduated from preschool.  My mind can't handle all of this movement forward. I feel like I am being catapulted out of a cannon, complete with free-falling and crashing down.  I feel even worse telling this all to you.  I just truly pray that you are beyond happy and at peace.  It is really the only consolation there is for you not being here.

79 weeks and 2 days of missing your cuddles and physical presence and always counting.

Until next time baby girl!

Love always, 
Ema


The Mighty Contributor

Wednesday, August 4, 2021

18 months


Dear Sonzee, 


I am actually lost for words on the fact that it has been 18 months.  The last few weeks have been so draining on the emotional level that I have lost my entire ability to deal with anything grief/you-related.  That makes things extra challenging because trying to ignore grief means I am essentially ignoring you.  I have zero desire to function but have no option not to.  I didn't expect this to get harder.  I thankfully do not have any expectations, but even without them, things keep feeling worse. I am sorry I am slacking on my daily throwback pictures, but that also falls in the scope of things I am finding impossible to do.  It is just this intense feeling of extreme exhaustion, but hard to really put into words.

Monday marked the completion of 78 weeks without you.  Tuesday at 1:08pm marked an entire 18 months without you.  Today, Wednesday, at 1:08pm(AZ time) it will mark the beginning of the next smaller "count up" to the 2-year mark.  I rationalized I could write this today because it is before 1:08pm, and therefore still falls under the official 18 months day, meaning I did not miss the actual date.  Trying to keep my guilt at bay and honor my moment in grief is a massive struggle to balance.  

Today I find myself in Dallas, in our Dallas home, at the Howard's.  It feels comforting to be in their presence during this time because even not talking about anything grief-related aloud we are with people who have lived the same life and journey of CDKL5.  This week brings years of "on this day" memories and moments, and there are some amazing ones, but my heart hurts.  If I harbor any regret within your life frame, it would be that we never got to take you to Morgan's Wonderland.  It was on the agenda that first pitstop here in 2017, but then we just clicked with the Howard's, our plans changed, and we said "next year".  "Next year" became six flags, which we did for 2 years, and then, you were out of "next times".  I probably won't ever be able to bring myself to go there now; that's okay.

It is hard to believe life continues to move on without you here. It still feels like one of those movies where the characters freeze but the background continues to change and all the people outside of the focal point pass by and continue on with their roles. I still feel stuck.  I still feel like I am always struggling to just get through each day.  I still feel like I am back reliving your life and death as if it all just occurred today.  I am thankful for the ability to recall so much, yet am saddened by some of the everyday details that are no longer as poignant.  Certain facts that were once as ingrained in my mind like the ABCs are no longer pertinent to my every day and therefore have been lost, like the ability to remember at what age and how much of your medication you used to take, how you reacted to it, or what side effects you had.  The exact placement of your genetic mutation used to be in the forefront of my mind, and now it requires a text to a friend who knows or a lengthy search through all of your files.  Every day I feel like I lose something else, but I won't know what that is until I am asked and can't remember or a situation brings it to my attention.

18 months have brought your name missing from pull-down bars that hold the names of the rest of us in the family.  Your insurance cards still sit in my wallet behind the ones we now use.  Your room still holds your Rifton chair and your bed, both empty, but unable to be removed.  Your car still sits in the garage, your clothing still sits in piles waiting to be made into blankets.  Your Ativan and meds of a similar type still sit in sealed containers in the laundry room cabinet.  Your presence feels less and less active, and the "caught off guard" moments of grief continue to come like punches to the gut.  Life of us being 6 has (sadly) become normal in terms of your physical presence, despite you always being in our mind.  Sadly the world can't and doesn't read my mind.  

Anyway baby girl. My hope for your 18 months is that they have been the best you could have ever had and better than what I could give you here.  You are never gone from my thoughts. You are never out of my heart. You will forever be spoken about.  Your name will always be said, and you will always be part of our family.  We all miss you and wish things could have been different.  Until we can see you again, continue to run free, and do you!

We love and miss you!

Until next time.

Love always, 
Ema

The Mighty Contributor