The hardest thing I have ever experienced is the death of a child.
The hardest thing I’ll ever have to do is to live everyday since that moment.
My name is Karen. I write, I design, I code, I create … and I love.
I am the mother of three wonderful children, one of which transcended to the hereafter on June 11, 2015 at the age of 24. I started this blog in an effort to gather my thoughts regarding the entire experience of surviving and finding life again after the death of a child. I don’t say loss, because I didn’t lose her. I lose keys and things … but I didn’t lose her. She wasn’t misplaced.
She was chronically ill for the better part of seven years after a liver transplant on June 20th, 2008 for sudden liver failure. She had two months of one summer where she was on the good side of good. The rest was pretty much a series of hospital stays, pain, suffering and turmoil. The medical community, in large part, blamed her for the allergic reactions, the chronic hospital admissions, the severe pain, the unstable med levels and so much more. Factitious disorder is something they tag you with when they can come up with no other viable answers. They were wrong on so many levels.
The morning of her death, we received the confirmed diagnosis of MCAS. The reason for everything.
Being the primary caregiver of a very sick adult child is hard enough. But to have to battle with doctors who were too prideful to look beyond their expertise is beyond even my words. To have to wipe the tears of my daughter when told the doctors lost faith and trust in her was more than any mother should ever have to shoulder.
My experience is this: Every day for the past seven years and beyond, my days were consumed in large part by caring for her. I knew how she was doing just by the way she said “hello” or “good morning”. I have bathed her. Taken care of her most personal needs. Survived bouts of severe hepatic encephalopathy. I learned to be nurse, mother, medical advocate, best friend, and parent. I patterned my life to work around her needs. She was my life even though I had two other fabulous children, a husband and two businesses to run.
Our relationship transcends time itself.
Then one day, she was just gone. There was no more worry. Only deafening silence … and the wreckage of the aftermath of losing a child. It wrecks you. It wrecks you in ways you never believed you could be wrecked. I liken her to death to how it must feel when bombs stop falling and peace is finally won. What is left is such great devastation that it is paralyzing, draining and overwhelming … breathing life back into the part of me that died with her is the single most difficult thing I will ever do in this life other than watch her die.
I have lost parents and other family members. Nothing comes even quasi-close to the devastation of losing a child. It goes directly against our chronological and social understanding of death. Our social expectation of the grieving process is worse yet. I have been told to love what I have left (as if I don’t). I have been told not to stay in my grief (as if its a choice). I have been tasked with calling on friends, when getting out of bed is the heaviest load I can bear in the moment. Wreckage is such and understatement.
I would give all the rest of my days to have her back even though nothing was left unsaid between us.
(¸.•´ (¸.•´.•´¸¸✿•.¸¸✿ My name is Karen. This is
my our story.