It's been a long time since I've written here...I think I say that every time I do write something. It's hard to know what to say at this point, everything sounds redundant. Monday was the 8 year anniversary of diagnosis day. I woke up that morning, not feeling like myself and not really knowing why. Personally, I do not agree with the statement that time heals everything, time just has a way of making you more numb to the pain that you feel each day...just not on "anniversary" days.
When I woke up Monday, I didn't know what the date was, but my body did. Grief is a part of my everyday life. I have learned that you can be both happy and sad at the same time, I know because I am everyday. I am truly happy, I smile and laugh everyday yet, at the same time, I am always sad. Sadness is part of me, but on many days, people looking at me can't see it, but I always feel it on the inside. So on this morning, I didn't know why my sad was showing until Facebook reminded me it was March 19, D-Day.
March 19, 2010:
It was early in the morning, the sun was shining, Kaleb was sitting in his highchair having his breakfast of cereal and yogurt when the phone rang. We were already 99% sure they were going to tell us he had Tay-Sachs Disease so when she said the word Sandhoff's Disease, for a brief second I had hope that this new word meant he wasn't going to die, but I was wrong. She explained that Sandhoff's was a more rare form of Tay-Sachs. More rare than what was already rare? How can that be possible? At that time children with Tay-Sachs were expected to live between 4-7 years, Sandhoff's was 2-4 years and Kaleb was 18 months. The sun may have been shining that day, but my world had just turned black. Kaleb would live through 2 more anniversaries of diagnosis days after that but we have lived through 8 of them, with many more of them yet to go.
Eight years later I can remember that morning vividly it was devastating, and at that time, I didn't know how I'd still be standing once he was no longer with us. I didn't want to think about the me I am now, I wondered how I'd manage, how could I possibly survive his loss when the idea that I was going to lose him was more than I could stand at that time. It's amazing at how much we can adapt to the pain we feel, how we can learn to function and to be productive through the heartache. Back then, I was sure it couldn't happen, but here I am. Everyday is a lesson on how to live through the pain of life without one of my children. But it is not a losing battle, he was a fighter and so am I and I know, one day I will see him again and oh what a reunion that will be!