Sunday, November 20, 2022

4 years 11 months and 23 days

Dear Sonzee, 

Today is the day...just one of the days I have dreaded since the day you died 2 years 9 months and 17 days ago. Tomorrow is another day I will dread and next Monday is one that I just cannot even begin to truly process. Today, your baby brother turns the age you were on the day you died. He called you "Dondee" because he couldn't even say his "s" when you were alive.  It took him the last 2 years to start to understand that death meant you wouldn't be coming home, but he still doesn't really grasp where exactly you are. (I don't think any of us really do to be honest-the concept is just too abstract).

I spent so many days crying in anticipation of today and the week to come that today, despite my heart beating a little faster, and feeling that extra drag in my step, there are no tears...yet. Maybe it is because I am pretty preoccupied in NY with your baby cousin Isla. In a few hours we fly back to Phoenix. 

Today, as Noam turns your same age, he will be starting his debut hockey career. You were in the middle of life and death during the same age equivalent time. It is a celebration of sorts that he is reaching today, as is every day we all continue to live and breathe, but birthday and age celebrations aren't what they once were to me.  There is a shadow that is always cast. There is a piece of my heart that can't join in with the rest.  Most people cannot understand.  Most people focus on how I am supposed to be dealing with it because it wouldn't be fair to Noam if I didn't. People don't understand the challenge of celebrating a younger child out aging their older one, and lucky for them they don't have to, so it is easy for them to say what I should be able to do. 

After today he isn't technically younger than you. He will (thankfully, and I hope) have age experiences you weren't afforded. I am grateful for that. I know what it is like to be stuck in the alternate universe of not aging, so I will celebrate the essential victory of what is tomorrow, but it doesn't come without the knowledge of you now becoming our youngest. Forever our 4th child who will become younger than our 5th. Forever 4. Forever 4 years 11 months and 23 days. Forever and never to be the big sister you should have been. While I won't let that take away from Noam's ability to continue (and I pray he does) to outage you every day for the rest of his life, I will also not ever forget that that fact is one and the same, and neither should others. 

Until next time baby girl! I love and miss you!! Hope to see you in the sky!

Love always, 
Ema

The Mighty Contributor

Wednesday, November 16, 2022

144 & 145 weeks 2 days and 8 hours

Dear Sonzee, 

145 weeks, two days, 8 hours (and at the time of writing this word, 7 minutes) have passed since you were last here with me.  The last 2 weeks have gone by, with each Monday coming and going with me intending to write you a letter, but the weight of grief disabling my intention.  There is still such a heavy breath-crushing grief that happens.  Over the last two weeks, FOUR more CDKL5 siblings went to be with you.  Maybe you already knew that? Perhaps you were part of the welcoming committee for them?  Maybe there is a place in heaven where you meet with all of those who had a CDKL5 mutation and you get to celebrate with all you are all able to do now?! That brings happy and sad tears to my eyes simultaneously. On the same note, my heart, albeit numb from all of the loss CDKL5 brings, has broken more.  So much so that I had to take the stomach meds that I haven't had to take since you were here and my stress was insane.  It doesn't help that we are coming up on Thanksgiving, which has been tainted since the last one you were here for when aba had to rush to Florida because Saba went into a coma.

We are also 4 days away from your brother being your exact forever age.  As I was laying with him tonight, playing with his hands, I wondered if yours were really just as small. I thought about holding his up to your handprints, but that would just make things worse for me.  I thought about the last time I laid down with a child his age, it was you, and at this exact age, you were dying.  We snuggled non-stop for the last two weeks of your life.  In fact, I didn't even go outside, I had no idea it was cold until I placed you on the gurney.  I am stuck because there is a part of me that should be relishing my last baby being four and turning five, but I am just counting down the days until he is finally five and I don't have to be haunted by these beautifully horrible memories of you. I should be thankful, after all, everyone wants their children to stay young forever, and I will always have a forever four-year-old.  It won't matter how many years continue to go on. 

For the last two weeks, I haven't been able to muster the strength to compose a letter to you.  The reality is that to write you a letter means I have to allow myself to feel all of the emotions that I have ignored during the previous week.  When it becomes too much, I skip it altogether.  The problem is that when another week goes by, more weighted grief is added on.  The burden becomes suffocating, and the only option is to force me to deal with it all. I know that is healthier, but at the time it seems easier to push it off. 145 weeks has taught me, it is not. 

The last two weekends we have actually been home. It has been nice (and also short-lived, as your sister and I head to NY for the weekend, again).  This past week aba and I went to a smile on seniors Chabad cocktail event.  I have to admit, and this will be the first time I will be saying my thoughts out of my head, being around that community makes missing you harder.  The best thing you did for us was flood 19th street.  It is so incredibly hard to be around all those people who were there during your life. It probably doesn't make much sense, but does anything when it comes to your death? I managed to fake my way through it all, even with smiles and laughter.  My motto always was "fake it 'til you make it" (it is one I have successfully mastered). 

This week your brother finally graduated from Goldfish at swim!  It only took him 3 years to move out of that level. Not to compare but your other siblings were far more advanced when it came to being around the water. It is ok, he is just ensuring we stay a Hubbard family for another 10 years.  On that note, I have been looking at older pictures more over the last two weeks and you have so many with coach Ed. It is impossible to comprehend you are both not here, but I do hope you are swimming together! Your floats are still hanging in the same spot, on the same hooks, I wonder if they are ever used?

Over the last two weeks, I (accidentally) clicked on a video of one of your seizures.  It was 2 minutes long and I was locked on it for 1:04 until I couldn't keep watching. It made little sense because my eyes filled with tears over thinking how I hate watching you seize and I never want to see you seize again, to missing both?! Can something please make sense?! I wouldn't wish for you to be here just for me to watch you seize but reiterates that you are gone.  Again, this is a fact my brain is well aware of, but one my heart still tries to grapple with. 

Anyway, baby girl, I will do my best to write to you on time this coming week. I know I have intentions of writing more, we will have to see how it plays out. Have a great week.  Enjoy your freedom! Come and visit! I miss you a lot!!!

Until next time.

Love always, 
Ema  

The Mighty Contributor

Thursday, November 3, 2022

2 years 9 months

Dear Sonzee, 

Another 4+ weeks has come and gone, meaning another month passed us by without you here.  This will be the last month that your brother will be your younger brother.  Well, I suppose he will *always be your younger brother, but not when it comes to his present age.  In 25 days, he will turn an age that you never were afforded the opportunity to.  My heart panics and aches more than it does on a typical day. I am really struggling with all of this. You lived 4 years 11 months and 23 days. Your brother as of today is 4 years 11 months and 6 days.  In 2 days equivalent time instead of you living life you had already begun your dying process.  The comparison of dates makes me sick to my stomach, but yet it is something I cannot avoid doing.  It is so hard to watch his life and not compare to how different yours was.

This month felt like the beginning of a very very long hike up an extremely steep mountain.  I try to find little things to brighten my day, like the beautiful fall leaves we saw in Chicago that were red, or the fact that you brought the first snowfall of the season at Bear Pines today.  But, I truly dislike this entire season. I am trying to overcompensate my lack of desire to bring autumn and decorations into the house by going purchase crazy accenting things around the house. I know now it is how I handle the toughest grief.  My inability to control the fact that you died and life won't ever be the same gets balanced out by my obsessive need to try and feel better by buying things. I don't know if aba would agree with it, but when it comes to my spending money to try to make myself feel better, he lets it go since it is just amazon. (We both know it could totally be worse).  The truth is, the happiness is only fleeting and then I am back on my search to fix the broken pieces of my heart...spoiler alert, nothing seems to work.

This month makes me feel further from you and brought out too many realizations.  For example, it has been 3 years since I last stepped foot into an inpatient room at Phoenix Children's Hospital.  By the way, your siblings still call it your hospital.  Laeya told me last night she thinks about you every time we drive by it. (That is a lot).  While on that topic, I am pretty sure it has been more than 3 years since we took you to the emergency department.  So much time has passed but your life still feels like it just ended yesterday.  There are facts I have forgotten, the smaller details of medication names and doses, but my ability to draw up any amount of mls into a medicine syringe without looking is still right on point. (It makes me smile and sing "hooray for ema" every time).

I feel further from the life of being a medically complex mom, but nowhere near living a life as a mom
of neurotypical kids.  I can fake it, I can do my best to fit in, but there will always be you missing.  Like at every hockey game or we aren't boarding a plane first. I still look for the handicap section at every ice rink and think about how we would have taken you. I wonder though if it would be as much. I wonder sometimes if you left us so your siblings could live a more normal life, so I could attempt to be more present for them.  I still struggle with doing just that.  You aren't here physically for me to spend my time with, but I am also not the same person I once was and the exhaustion and the ability/desire to be present isn't always what it should be

This month was just another on the long road of life without you here.  Another month for me to continue to learn how to balance life and death.  Another month for me to continue with my Sonzee-stones of trying to put one foot in front of the other. Another month of being a grieving mother to 4 living children and you.

Anyway baby girl, I love and miss you. Continue to visit me and make yourself known so I don't doubt it.

Until next time, 

Love always, 
Ema



The Mighty Contributor