Wednesday, July 27, 2022

129 weeks and 2 days

Dear Sonzee, 

This last week was the last week that aba was in vacation village for the summer.  He and Tzvi will spend the next 10 days in Israel and then go back to Phoenix so Tzvi can get back on the ice. The week was filled with a lot of yummy lunches and dinners.  We also got to see Laeya on Sunday.  It was amazing to give her a hug and kiss, and then sad to send her back to camp, but, she is happy so that is what matters.  It is amazing after just a month of her being gone how I felt reuniting with her.  It makes me wonder how it will be to see you, again, hopefully, one day. 

This last week I had another panic attack. It made it the 2nd one over the last couple of weeks and the first ones I have experienced in the previous 6 months or so.  I am pretty sure the culprit was grief, but I cannot confirm or deny that guess.  

Someone who had not seen us since the last summer you were here asked me excitedly about you.  I paused for a moment and then told them you are no longer with us. I felt so sad for them.  Me, I have known you have been gone for 2 years 5 months, and 24 days.  They just found out this information.  It breaks my heart to have to break someone else's.  It was in the middle of the night after this conversation that I had my panic attack. I find the ones where they wake me from my sleep with the squeezing headache to be the worst type.  Especially when there are no dreams to accompany them.  It took me a good 3 days to finally relax, but I can tell even days later that anything could send me back.

Bubbie, pop-pop, and Max came to visit us last shabbos. Maxi is the cutest dog and I bet he would have snuggled up against you as he tried to chew your feeding tubes and cords.  It would have been a blast trying to keep him off of you.  It was a very nice weekend and the weather was so beautiful we spent so much of it outside on the deck looking at the lake.

On Monday we picked up Meena and Tzvi from sleep-away camp. Meena absolutely loved it, while Tzvi was his typical "I am never going back there" self. That conversation ended with yes he will be and he can decide to have fun during it or not, his choice.  He made some new friends, they even came to celebrate his birthday with us at the water park before he left for Israel.  That made my heart happy.

Anyway baby girl.  As always, I miss you so very much! Be safe, and keep having fun!

Until next time. 

Love always, 
Ema

The Mighty Contributor

Sunday, July 24, 2022

learning...

7 songs have played on my "Sonzee blogging" playlist.  I have written words and erased the majority of them.  The tears, they want to come, but I keep holding them back for some reason.  I know I shouldn't.  Deep down I know it's the reason I have experienced two panic attacks within the last two weeks.  The ones that wake you from your sleep and bring on a headache that feels like someone is squeezing your head with a very tiny rubber band.  The ones that take at least 24-48 hours to fully recover from, despite attempting to will the cortisol levels in your body to readjust themselves.  Yet despite those best efforts, what's more likely to happen is for the levels to rise again because something (simple) happened that you weren't expecting, like someone speaking when you have your back turned. 

Grief.

It really never goes away. Or maybe it takes longer than 2 years 5 months and 21 days?  The whole learning to live with it concept is quite honestly horrible, and my ability with it fluctuates.  I (naively) thought that maybe I was getting ahold of it.  I thought maybe with life moving forward, maybe with the time passing, maybe with parts seeming normal that I was starting to "learn to live with it".  But then it feels like utter chaos as I try to combat the feeling of being completely mentally unstable.  One minute I can feel like I have this whole learning to live with grief concept mastered and the next I am taken out at my knees. I want to imagine that the pit in my chest and the tears in my eyes will one day permanently pause if I was actually accomplishing any ability to learn to live with it.  Maybe "learning to live with it" is simply acknowledging its always-ever presence?  Maybe accepting the pit and the tears are what I need to do to learn?

I'd rather not.

12 songs have played. I'll allow the tears...for now.  I will admit this journey is complicated, that there isn't a one size fits all.  Maybe what I have learned in 2 years is that grief is hard to live with. I will give myself grace while I sit outside and let the wind wrap itself around me, pretending it is her coming to give me a hug because G-d knows I could surely use one of those from her. 


The Mighty Contributor

Monday, July 18, 2022

127 & 128 weeks

Dear Sonzee, 

I had every intention of writing to you last week, but time slipped away. I feel like 12 days ago was so long ago and I cannot really remember all that occurred.  I am sure it was similar to the week before, just shopping with Mrs. Malka and eating.  Eating has become an activity, one that I am going to eventually regret, and one that will undoubtedly lead to me participating in that forbidden word exercise.  

Since I cannot remember much of week 127 I will fast forward (or maybe it is rewind?) to week 128.

Week 128 led aba and me to New York City.  Savta came to watch Noam (he wasn't so keen on us leaving him, especially without your other siblings, so he spent all the morning hysterically crying for me).  Since our return on Friday, he has not wanted to be away from me, but aba and I did sneak out again for dinner and once savta reiterated we were not staying away he calmed down.  I wonder in his little 4-year-old mind if the fact that you left and never came back is what made things difficult?  That and your other siblings are also away.  I won't pretend to know if either of those are the cause.

We went to New York City to spend time celebrating aba turning 40 and to hang out with Harper's parents.  It is always an amazing time when the four of us get together.  Tons of laughter, tons of food, and tons of fun.  There is always something so I don't know the word, comforting? to spending time with another couple who has lived our lives for close to the same amount of time and having it end similarly.  We can laugh until the tears flow and then have the tears flow a second later over the fact that our girls are gone.  We can cry during a broadway show that is not even remotely related to you or Harper, but just because something in our minds decided to relate it to you one of you, and then go about our day as if life is normal.  In a sense, it is because this is our new normal, it is our life, lifeaftercdkl5.

I leave these gatherings ready for the next one, planning already underway for our next reunion and not wanting to return to the other part of normal, where people can't possibly understand (even if they try). To a world where the tears and jokes have to be more closely monitored so as not to make others uncomfortable.  There is 70% of me who doesn't really care about making others feel uncomfortable or the situation awkward because it is my life, but the 30% of me that does tends to win.

I ordered new paint markers to make you some rocks, they came during week 127.  I have to admit I haven't painted any in a while, so on my agenda this week is doing that.  

I cannot believe tomorrow a month has already gone by since we left Phoenix.  How does time fly by so quickly?  Another month until we leave to head back. Wish you would come and visit me here in NY.

Missing you a lot!

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, July 5, 2022

126 weeks and 1 day

Dear Sonzee, 

Today is July 5. Two days after another month without you and one day after another Monday.  This week seemed to go by quicker, but it was also tougher in terms of emotions. This week, I found myself having a few of those "smack me in the face" moments of if you were here.  If you were here things would be so much different, so much so I cannot really make out an image of what it would actually look like. I have tried to imagine what if you were with us in this lake house with 12 stairs up to the top.  I have tried to imagine what if I had to push you in your wheelchair up the hill to the Husarsky's or to the camp house multiple times a day.  I have tried to imagine what if you were here for the summer with Noam.  Would you have ever been accepted into Camp HASC?  Would you have ever been considered "less complex"?  Would I have finally convinced Nurse Paige to spend the summer here with us and have her take you to camp?

This week we drove to uncle, Hay-Hay, and baby Isla again.  Would we have done that twice in one week if you were still here?  Would I have been able to be on newborn baby night duty if you were here? Miss Malka and I have done a couple of runs to different stores, but otherwise, I have been kicking my feet up on the sofa and watching Disney nature videos.  I even took a nap, during the day.  Sure there are a lot of things I would like to be getting done while I have the time, but I am starting to master this whole relaxation thing and it is probably better for me than crossing items off of a to-do list that isn't time-sensitive.

This week we received our first letter from camp. Surprisingly it was from Tzviki and he even said "camp is good".  I feel so relieved reading that considering it took until today for a candid shot to catch him smiling.  I am convinced he purposely doesn't smile and ignores the camera on purpose just to stress me out.  Thankfully the photographer caught three of him smiling and happy. I also sent him a love note email explaining I wouldn't refill his canteen money if I didn't see a smile, tonight it has been given a boost. Laeya lost her glasses in the camp lake.  Well to be fair, she gave them to the lifeguard who placed them on the dock and they weren't there when Laeya went to get them back.  Poor girl cannot see without them, hopefully, her new pairs arrive tomorrow.  (She of course left her backup pair in Phoenix).  Meena's camp mom sent me a request for more skirts, so I will either be driving there in the morning to drop them off or sending them UPS, I haven't decided just yet.  Otherwise, the two of them have been smiling ear to ear every day. 

On Sunday we visited a new farm, it was actually called a homestead.  They had so many activities and so many adorable animals.  Noam was obsessed with the baby goats and ducks (as were aba and I).  They had wagons and little kid tractors and cars sitting around to be used.  The minute Noam grabbed a wagon my heart stopped.  It came out of nowhere, the reality that you should have been there with us.  He pulled the wagon around a bit before he found a kid-sized John Deer and then left us to go and play.  My eyes caught sight of a hammock perfectly located amongst the trees just blowing in the breeze.  It called me over and I laid on it for a bit.  For one of the first times on this grief journey, I let the tears just fall down my face only to wipe them as they reached my chin.  I repeated in my head that I should just let the grief wash over me and reminded myself that it is better to grieve at the moment and not to suck it up and pretend that I was okay.  I told myself what so many others have said to me, it is easier to be in the moment, so on the 2-year and 5-month anniversary of you being gone, I took the advice.  I am unsure if it made anything easier, but it did make me feel better to let it out vs keep it in.  I have kept it in enough to know it wouldn't have stayed in for much longer and so on the spot I am sure you would have swung with a smirk on your face, head tilted towards the sky leaning into the breeze, I let myself be wrapped up in your amazing breezes and allowed the tears to fall. 

Anyway baby girl.  The tears I am sure will continue and I will be better about allowing them their right to do so.  I hope you come and visit me!  I hope you are having an amazing time wherever you are.  I hope you are flying and free!

Until next time.

Love always, 
Ema


The Mighty Contributor

Sunday, July 3, 2022

2 years 5 months


Dear Sonzee,

How did I miss a month? I am so confused. I went to count the months and realized there was no post on June 3, but I’m failing to understand how I missed writing a post. Maybe I combined it with a weekly post and I don’t remember? I know the 3rd of June was busy with moving into the new house, and then Shavuot happened…but I still should’ve written you a letter. 

Today another month begins without you. That has happened 52 other times as well. It doesn’t get easier, just more different. Sometimes different is horrible and sometimes it just is.  Either way it’s still difficult to explain in a language people can understand.

This month was lengthy and filled with new challenges, like trying to find the perfect spots in the new house for all of your things and having to always look at your stuff even if I’d prefer for it all to be hidden at times. It was also during this month that for the first year since we have come to NY that we are in a different house in vacation village, a place you never were.  It was also during this month that I met your new cousin, someone who won’t ever meet you and will only know you from pictures and stories she will be told. 

This month brought on a lot of grief randomly, out of nowhere, but it was also the first month that I allowed myself to let it wash over me and wasn’t so quick to breathe it away. Instead of pretending I was okay, it was the first month I allowed the tears to fall out of my eyes and down my face before I rushed to wipe them away…I would say that is one way grief is different. I feel the pain, it sucks, it’s horrible, but it’s never going to go away so I might as well embrace it as it comes…or at least try…

This month brought another loss to the CDKL5 community, but at the same time it was another month I found myself drifting further from that life.  I am accepting that for my mental health I can’t be part of that world, it’s too much…but that’s okay. 

This month like I mentioned was tough, but knowing you’ve had another month of freedom makes it alright.

Until next time my love!

Love always,
Ema