Dear Sonzee,
Today marks 6 years since I last held you. Since I last gave you kisses. Since I last snuggled you. Since I last wrapped you in a blanket. Since I last carried you through the hallways in our old house. Since I last saw your siblings give you a kiss or a hug. I would say I can't imagine how time has gone by. But similar to when people say they can't imagine anything related to a medically complex kid and them dying, I will correct myself immediately and say, I can imagine, I just don't want to. I don't want to process that life has continued on for the last 6 years without you. It has to be impossible that 313 Monday's have gone by without you being here, but the reality is real and it is beyond cruel.
I have found myself confused when I see girls your age and realize had you not had a mutation on your CDKL5 gene, you would be in 5th grade, a year away from your Bat-Mitzvah. It's a challenging concept to wrap my head around. Momentarily I find myself back in the land of what if. Forget, what if you had never died. What if you had been born with all of your genes functioning properly? What would that life had looked like? Maybe one day I will get to see a peak into that life and realize the one we did get to live with you was actually the better one? I can only hope at least.
This year I am on the verge of being numb to the redundancy of my feelings and allowing myself to sit in the depths of the sadness. It doesn't help that your twin girl is living her best life 7500 miles away from home. On one hand, ever since you died the absence that is created when your siblings go away doesn't even light a candle to the absence that your actual loss brings. On the other hand, the house is missing the arguments between all of your siblings, her daily routine, her bedroom light being left on (well actually, Tzvi went in to use the bathroom the other day and left that on, so maybe it does get some use), her presence, her friends coming and going, her constant requests to be driven here and there or to go out shopping. We went from being a group of 7, to 6, now to 5. Although I pray it won't remain that way, but life has shown me that anything can happen and I am not naive to think it can't.
Over the last 6 years I have learned a lot about myself. Most recently I learned I love walking around carrying live chickens and I love taking care of foster kittens. The reality is that I am just trying to fill the monstrous void you left. It's the void of you yourself paired with the confusion of what on earth can actually make me even momentarily happy since you left. There is a significant void that nothing can fill, but it's definitely not for a lack of trying.
So many times during the last 6 years I have found myself thankful for you not being here. I mean I am thankful for you first and foremost. No more seizures. No more failed GI system. No more broken bones. No more pain. No more being stuck inside your body. I am thankful in general. Not that I doubted it, but there is still no cure for CDKL5, so I am thankful we weren't sitting here filled with false hope waiting. I remember the first year after you died, I was torn between utter fear there would be a cure and doubt there ever will be one. 6 years later, I just sit here feeling broken for every family that will eventually live this side of the journey, but also relieved that the fear of when for you/us has come and gone. Now, it just is life. No wondering when. No wondering what life will look like. Not wondering what the future would look like for you in a world where aba and I had died first. Not wondering how extra difficult your siblings' lives could have been, or what they might have missed out on, or what I as their parent would have missed. I am thankful that as your mother I am now the one who has to suffer from your absence. If I am honest though, I think your suffering was far greater. For me it is just a permanent pain that despite my feelings 6 years ago, I have actually managed to learn to live with. It is ever present, constant, nagging, and never ending, but so are my thoughts about you.
I hope you know how much you are truly missed. Sometimes I wonder. Sometimes I read the letters "from you" that your twin girl has written me on mothers' days or my birthdays throughout the years and pray they are somehow your words being written through her. I truly hope you really do visit even though I don't see you. I hope you really are at peace wherever you may be. I hope you know how much I wish I could twirl your hair and give you one last kiss. I hope one day I get to give you another cuddle, but until then I hope you have someone to give you hugs for me. I hope you are settled wherever you are. I hope the last 6 years have treated you better than your earthly life was able to.
I love you little bear. I miss you.
Until next time.
Love always,
Ema
Sometimes I wish the world could know just who you are to me
But some days I feel selfish like you're a secret I should keep........I wish to you the greatest things and all your greatest dreamsEven if that means they take you far away from me
