Tuesday, May 31, 2022

121 weeks and 1.5 days

Dear Sonzee, 

This last week has been really tough. I wish the grief could stay more even-keeled, but I guess that isn't how this all works.  This week, I spent a lot of time getting the new house ready for move-in day.  It won't be the perfect ribbon-cutting ceremony, but hopefully, by the time we leave for NY, it will be close to perfect.

There is a lot of weight that comes with opening boxes that say "room #1".  It was worse when I randomly picked a box, opened it, and didn't even consider it would have your stuff in it.  Since grief avoidance is my specialty, the minute I caught a glimpse of something of yours I immediately shut the box and moved on. (Well until the whole 1.5 days into week 122).

You'd think by now I would be able to look at your stuff without crumbling, but that's a huge nope.  Maybe it is because I haven't seen it in so long? Maybe it is because in 19th street I had to purposely open a door and go into your room willingly.  It only caught me off guard if the doors were left ajar, which wasn't often. Maybe it is just how this will go.  Aba seems to think eventually I will get used to it.  Today I disagree with that notion, I can't imagine (do I even want to?).  Will I eventually become numb?  Will it eventually be different?  For today it is hard to imagine coming home every day and having to see your stuff in my face without you there.  I can't lie, after I set a lot of it out I wanted to throw it all back into a box, but I am going to try and do the opposite and attempt to accept our reality.

This week I saw my first hummingbird at the new house. I recorded him/her for a good 2 minutes (until aba scared him/her away). I joked with him you clearly didn't want to see him that day, and he pointed out you visited him at least once since you died...so he won that convo hands down.

This last week from Saturday night until this morning Laeya and I went to Florida for a bat mitzvah. We saw savta and had a nice time.  We also drove to see Jenn (and Dalia) and Elle, and got to see Ronald pitch in a tournament (this way when he goes to the MLB we can say "we saw him when...".  I feel so lucky to have seen them both twice this year!

This week your oldest introduced me to this song called "glitter" by Patrick Droney and I can't make it through it without my eyes filling with tears. It is such a perfect song about grief and you. My heart continues to break more for her and all the grieving she does for you.  I know how suffocating it is for me, and it kills me that she feels a similar pain.

Anyway baby girl. I love and miss you!

Hope to see you soon.

Until next time. 

Love always, 
Ema

The Mighty Contributor

Tuesday, May 24, 2022

119 & 120 weeks and 2 days

Dear Sonzee, 

I am so beyond sorry that over 2 weeks have passed since my last letter to you.  In fact, it has been exactly 14 days since my previous blog post.  No excuses, just the days get away from me and the grief exhaustion weighs down the typical day-to-day life exhaustion and here we are...2 weeks since.

119 weeks was filled with so many work meetings and progress reporting. That paired with the typical chauffeur services for your siblings with all of their activities and attempting to get things done with the new house. It finished with me helping with sizing at the hockey rink for the older kids' hockey tryout weekend.

120 weeks wrapped up another year for me at FBC.  With that, your sisters and I went to NY for the weekend for Meira's bat mitzvah.  You were missed and mentioned a multitude of times.  It is always a great time in NY for me.  It was a beautiful Simcha and we all loved seeing our friends (and uncle and Hay Hay). I feel like I am living the luckiest life, having friends and family in NY that I get to see over the summer and during events, and then the same in Arizona.  We got home late Sunday night after a slight hold-up on the plane in JFK.  We did learn however that it is your brother with the bad flying luck, as everything went smoothly in the grand scheme of things. 

As I age my memory seems to be fading a bit so I think I touched on the most important aspects of the last 2 weeks.  Construction continues on and I dare say I see the end in sight. We miss you a lot and love you more!

Until next time.

Love always, 
Ema


The Mighty Contributor

Tuesday, May 10, 2022

Does Time Heal?

Yesterday our youngest had his cast removed from his hand.  He fractured the third metacarpal 3 weeks and 2 days ago and had the cast for 3 weeks.  When the doctor looked at the x-ray she couldn't even tell where the fracture had been.  It was completely healed, in just three weeks.

Over the weekend Sam and I were asked if we felt that time has healed us.  Sam gave his answer, but due to the timing of the question I wasn't able to, and then the opportunity never came back.  I was thankful because honestly there wasn't enough time for me to formulate my response.  So many thoughts have crossed my mind as an answer because it isn't so simple, at least not for me.

Today marks 2 years 3 months and 7 days since Sonzee died.  I feel like my world has changed more times than I can count since that day and in so many ways.  There is healing in terms of our home life is more stable.  We don't have to change plans at the drop of a hat due to a last-minute hospitalization.  We don't have to keep a hospital bag packed and ready to go in an emergency.  The crack that was created due to the chaos of CDKL5 has healed itself to 80%, which was equivalent to when Sonzee's middle sister had her cast removed from her elbow after fracturing it in 2 places.  We were told with use it would eventually reach 100%.  

There is a comfort in knowing Sonzee is in a far better place than we could provide for her in some ways.  She is free from being trapped inside her body, she can communicate in the truest form of total communication.  She can run freely and do whatever it is she wants to do (I hope within reason for a 7-year-old).  She is whole, she has zero scars or remnants from the seizing body she was stuck inside of. She is healed beyond any fracture that could be placed into a cast.  

My heart endured its true first break in April 2015 when we were given Sonzee's CDKL5 diagnosis.  I don't think there is a potential to ever truly heal from the scars that were left from watching her seize thousands of times during her life. I think it is beyond impossible to heal from the damage that was done to my body as I lived with anticipatory grief and watched her straddle the worlds of life and death more times than any parent should.  I think there is no healing from watching her siblings have to live the life of a special needs sibling only to have the title change to bereaved sibling.  There won't ever be true healing from having to access her port, draw her labs, administer meds, handle her feeds, and essentially play nurse more than I did mom over her 4 years 11 months, and 22 days of life.

I don't consider healing to be an option when for 15 days I watched her body reject foods and fluids.  For 15 days I watched her body shut down, in a way that forced my mind to think awful thoughts no parent should have to think.  For 36 hours I had to watch her as her heart continued to beat but it was clear she was no longer in her body.  Then similarly to her birth where one minute she wasn't here and then was, one minute, she was here and then wasn't.  

2 years 3 months and 10 days ago she left this world and I have spent every day since trying to manage how to exist in a world that continues on without her and without the world of special needs.  I am truly at peace that I no longer live in that world, but the scars from that life are easy to uncover in a split second.  In the last 2 years 3 months and 10 days I have found comfort and discomfort by doing the same things at different times.  Life has become more about making sure every day I allow myself grace to survive.  

Time has done a lot of things since 2015 and 2020.  It has allowed for some amazing incredible moments and some truly devastating life-altering events.  As far as healing, I think it should just be left to broken bones.


The Mighty Contributor

Monday, May 9, 2022

118 weeks

Dear Sonzee, 

Another week down, an eternity for me to go.  This last week I went with your little brother to see Blippi live.  It sounds as horrible as you can imagine, but I did learn that there are kosher alcoholic beverages available at children's events (Thank you g-d).  The only challenge was finishing it before the show began.  Noam appeared to have enjoyed it with one of his besties and thankfully his mom is one of mine, so it made it as enjoyable as it could be.  While we were there I couldn't help but notice the little boy being pushed by his father in a wheelchair. After I smiled at them and walked by I thought about how I didn't know if you ever loved any specific character or show that you would have liked to see in person?  Did I never offer you the opportunity?  Did you just not care enough?  Is it solely because baby #5 watches shows and the rest of you I was more strict on tv time?  I doubt that's the case Tzvi loved Chuggington, Laeya was obsessed with Angelina ballerina, and Meena loved whatever Laeya loved.  Maybe it was because we spent so much time absorbed with your medical needs I never took the time to figure out which character would have been your favorite?  After all of those thoughts as we walked to our seats I saw the section that would have been for us, up at the top with the fold-out chairs so we could move them to the side to get your wheelchair in.  Truthfully, maybe it was just because of your CVI that we weren't able to figure it all out?

The school year for FBC is quickly coming to a close.  I have been swamped with IEPs, MET2s, and transition meetings.  I am looking forward to summer being just 8 school days away.  I am sure despite "all of the time" I will theoretically have over summer will fly by without me getting anything done, but here is to hoping.

Last week we all went to grief group for the first time in literally years.  I always enjoy going, but Tzvi typically has hockey so the boys don't get to come.  I think it is good for your siblings, but of course, they say they don't need it.  They end up enjoying it when they do go though.  It was Noam's first time being old enough to attend.  It appeared he enjoyed himself.  He and Meena made me handprint pot holders, amazingly, they were red. 

We are another week closer to construction being over. I (think) I am ready to set up your space, so I am eager for that part of the kitchen to be finished already.

Ok baby girl. I hope you have a great week with your friends!

Until next time.

Love always, 
Ema


The Mighty Contributor

Sunday, May 8, 2022

2 years 3 months and 5 days




Dear Sonzee, 

I am sorry I am 5 days behind the 3rd of the month.  Different than last month, this month I had planned on writing to you, but life got in the way.  It makes me cringe to write that, but it is the sad and honest reality.  This last month I found myself attempting to carefully balance the beam of grief only to fall off a few times. It is so much different than when I used to walk the tightrope while you were alive.  There was panic every time I was on that rope, and that rope was tied to the tops of skyscraper buildings with nothing but 1000s of feet below.  The grief beam is a bit thicker on the sides, is only 5ft or so off the ground, and has mats when I fall.  It still sucks, but it's not nearly the same, probably because I have already fallen 1000s of feet.

This month continued to bring me the reality that life without you is permanent, but I am getting better at handling that.  Or maybe it is just that I have mastered the art of ignoring the nagging feeling that enters my chest when that fact throws itself into my face.  This month I continued to disconnect myself from some parts of life that related to you.  It isn't because I don't want to honor those parts of life with you, it is that I acknowledge how hard it would be and I also am giving myself permission to allow myself the space.  For the first time in close to 8 years, I did not sponsor a table or any part of the Ryan House breakfast.  For the 3rd time since you have died, I didn't attend (virtually or in-person).  I still haven't been able to visit the memorial garden at Ryan House to see your bear tile in person.  Funny how I once pictured myself going after you died and sitting outside, but since you have died I haven't even driven that far down Thomas Road.

This month the grief was extra exhausting.  It is really a different type of exhaustion than being up all night and then going to work.  It is also really challenging to explain with words.  But I am drained.  I am drained from having to think about you not being here, but I am too drained to even talk about you that much.  I have realized that I don't bring you up as much with strangers.  I am fairly certain I have talked about my 5 children ages 12, 10, 8, 7, and 4.5 in the present tense to many people.  It is easier.  It still gives me pause when I say your age.  I still have difficulty comprehending that you would have been finishing 1st grade.

This month I painted a rock for you.  Although I didn't take a picture to include in this post, instead I went with a beautiful picture of your sister sitting with you as she painted rocks for you.

This month isn't any easier without you here that is for sure.  It is just another series of days and weeks that continue to pass us by without you here.  It is just another period of time that doesn't have you with us and makes our lives vastly different than how you would have known it.

Anyway baby girl.  Another month is gone but you are still far from forgotten.  I wish you would find a way to come and see me!  I miss you so much. 

I love you.

Until next time.

Love always, 
Ema


The Mighty Contributor

Monday, May 2, 2022

117 weeks

Dear Sonzee, 

Sometimes the weeks fly by so quickly, and other times I feel like it couldn't have just been one week. Today marks the third first Monday of May you aren't here.  I am not quite sure how it is already May.  I am not quite sure how you have missed so many.  I am just not quite grasping your absence this week.

Last week was busy getting back into the grove after spending 12 days in Florida.  The house has come a long way in a week.  It is a good thing since we are officially out of this apartment living in a month from tomorrow.  Ironically, I just realized it will be the 3rd of June.  I find it amazing that you really do orchestrate everything.

I finally went to see your home yesterday with Meena and Noam.  I am sure you were aware because of all the wind. At one point Noam happily and casually said "hi Sonzee".  I wish I had caught it on camera.  We painted you some well-overdue rocks.  We reglossed a lot of the ones sitting in the sun.  It is still so hard to see your name literally etched in stone.  They hired some new employees at the cemetery.  There are a lot of new headstones, but your space looked the same. You have some amazing rocks, there is one special red rhinestone rock with a sweet message and I love seeing it sparkle in the sunlight. 

Last week on Thursday I was part of a 2-hour IEP.  It was a rather typical IEP except not everyone is privy enough to know about you, and the home SLP and OT of this student attended and were explaining the complexities of the child and were basically insinuated he was the first kiddo who had the types of needs he has.  Firstly, the beauty of FBC is that it is a school that has so many medical complex kiddos.  Secondly, you were more medically complex than he is, and while I don't know everything, I can promise, I know more about this child than they do, because for 4 years  11 months, and 22 days I was also a parent of a similar one.  Ever since you left I have a very specific type of "grief angry", maybe we should call it "grangry". Anyway, it is basically regular normal grief and anger mixed together and on steroids.  It happens when I am completely overwhelmed with my grief and frustrated by something someone has said that they have zero clue relates to anything much less the fact that you were alive, had CDKL5 and died when you were 4.  When I am "grangry" I want to scream about you and everything that we experienced while you were alive and let people know that you existed. In this case, I would have also liked for them to know that I once used to have an FBC mom hat in addition to an FBC SLP hat, but I kept it all inside.  I was attending virtually and had to really control myself not to slam the laptop closed, multiple times.  The meeting ended, but when I am grief angry it doesn't subside as easily.  It has been 4 days and I am honestly still off-kilter and upset about it, but I suppose a good grief meltdown is on the horizon soon anyway.

There are only a few weeks left of school and a lot of travel coming our way for your sisters and myself for more bat-mitzvah's, summer is around the corner.

Anyway baby girl! I miss you lots!

Come and visit <3.

Until next time.

Love always, 
Ema






The Mighty Contributor