Friday, September 3, 2021

1 year 7 months

Dear Sonzee, 

Another month has come and gone.  This one, not one of the easier ones for sure.  I am sorry I haven't been able to visit your grave.  I will go today though to bring your new rock.  I have so many I need to make for all of the upcoming holidays, and obviously, one to represent the flood of the house.  The house alone has really tipped my scale of coping with you being gone.  Aba warned me about going into the house the other day, I wasn't planning on going, I didn't end up going.  I really do not think I will be able to ever walk by your room again.  I keep saying that I know you are not there and that all your stuff is with us, but it is just so hard.  Even if they replace the walls, it won't ever be the same.  We won't ever have your bed in there, we won't ever have that uncomfortable red chair in there, and you won't ever be there.

You haven't been there now for 19 entire months.  I realized this month that had we never had Noam, Meena would have lost her title of big sister.  Obviously, she would have always been your big sister, but she wouldn't be an "active" big sister,  She would have become the youngest, the entire order of the house would have shifted.  Another concept I am going to have to prepare for because time continues to fly by at record speed and before I know it, I will be staring at my screen and writing to you on the day that Noam turns 4 and then a year later when he outnumbers your days here with us.  In just 2 months and 25 days, he will also be 4.  I really do not know how I will be able to process that since you will forever remain 4 years old to me.  The thought of your younger brother turning your age and then aging you makes this even worse.  It is just another horror of life after burying you.

Noam asked (again) where you were.  I reminded him you were buried in the ground.  He gave me a chuckle as we drove to school and he said, "Ema, you are driving over Sonzee".  I reminded him that you were safe in a grave next to the street and in a place, no one could drive over.  His journey with your absence is fascinating to me because of his age and comprehension of the concept of your absence.  I know he misses you a lot.

This month brought me more tears than I think I have cried over the last 19 months.  I feel like this month brought me back to square one of my grief and if it is even possible into a darker part that I never experienced.  It has definitely been the most challenging.  That is the worst part of grief.  Thinking it can't get worse and realizing how false that statement is.  Similar to life with CDKL5. It can get worse, it does get worse, and it will get worse.  I am still waiting for it to all become more manageable. I suppose I will even continue to hope that it is still possible.  Until then I will just be thankful you left me in the hands of some amazing supports.  

Anyway baby girl.  19 months of missing your sassy smirks and beautiful blue eyes.  19 months of missing your snuggles and your curly hair.  19 months of missing seeing you in your Rifton chair by the big window as I drove away or came home.  19 months of missing your nurses and all of your equipment in the house.  19 months of not accessing your port or hooking you up to your TPN/Lipids.  19 months of no feeding tube changes, doctor appointments, and dropping you off at school.  19 months of incomplete family photos and missing your presence in our home.  19 months and counting of missing you forever.

We love you Sonzee bear!

Stay well, stay healthy, and stay safe.

Be free.


next time.

Love always,

The Mighty Contributor

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