Monday, October 1, 2012

Cardinal sins


here's something you never, ever, EVER say to the grieving mother of a dead child.

You NEVER tell a mother who has lost her child that you don't believe she loved her child. NEVER.

You especially don't deliberately seek her out for this special brand of cruelty.

You don't somehow convince yourself of your special crusade by showing a henious lack of humanity. You don't make yourself feel better for your own problems by trying to cut down and hurt a mother who buried her child.

It's crazy to me that sometimes people see my palpable pain and immediately attempt to negate it. Yes, I know it's hard to wrap your brain around my pain and grief. I know that I am living every mother's worst nightmare. I know that it would be easier for you to somehow make this about you, about how you can protect yourself from what I am living.


If you cannot handle seeing my pain, then simply walk away. I don't expect anyone to solve this for me. It is not your nights punctuated with his voice, with dreams so vivid that I can still feel his hands in mine when I wake up to discover that the closest I will get to holding his hand again is a plaster mold that sits on my mantle. I don't believe anyone can take my pain from me. I know it's uncomfortable to see me and to know that my son died.

Just walk away. Don't try to make it easier for yourself by villianizing me. Do NOT come to my blog on a false crusade and attack my love for my son. Do not show your capacity for monstrous hate by projecting that vileness upon me and how I loved my son.

There are people in this world who have the knowledge to speak about my relationship with my son. Since I keep this blog strictly annonymous and barely trafficked, most of those people don't even know this blog exists to speak here. Not one person who walked this five year journey with me would ever suggest such disgusting nonsense as accusing me of not loving my son.

This blog is annonymous very deliberately. It is not monetinized. It is not advertised nor promoted. It has only rarely been shared that it exists with anyone online. It is my journal, not my self promotion to the world. I made a decision to keep this online years ago, after II stumbled, in the belief that it might be stumbled upon by someone, sometime who might need to know that you can reclaim your life from bad circumstances, that what happens to us is not what defines us. Under no circumstances will I allow the annimity of this blog to be violated. Most definitely NOT for someone's bizarre and unprovoked personal vendetta.

Even so, no matter what any of the infrequent readers of this little corner of the world might think or feel about what they read here, or what they think they have been told about an annonymous blogger who has deliberately choosen to conceal her identity, do NOT accuse me of not loving my son.

I knew from the moment I first saw Micah's photolisting that he was terminal. I knew from the day they presented his case to us that he would not see adulthood. The extent of Micah's condition, of his needs, of what the reality of parenting him would look like was nearly overwhelming. Micah had nearly every point on our "cannot handle parenting" list (if we had known about his profound autism we would have realized he actually had every point). However, we immediately realized that Micah was never going to find another family to adopt him either. We genuinely thought with proper medical care we could get him close to 18, but we also thought we could get him a new liver.

We adopted Micah because the thought of leaving that broken little boy to never know the love of his own family, and to leave him to die without that love seemed more monstorous to us than we were capable of ever being. We adopted Micah because he neeeded someone to love him and we weren't afraid to love him.

Micah had been with us exactly three months the first time someone advised us to give up on him. Our trusted attachment therapist brought me into his office after working deligiently with Micah for months and referring us to a Psychiastrist for what was ultimately diagnosed as Bipolar Disorder. He informed me that it wasn't that he didn't know I could save this child. After years of working with my children, he believed I could save any child I set my mind to. It was that he felt the price I would pay to save Micah was too great, too much for my other children to lose, too much of a personal toll I would take to walk the journey with Micah.

That was the only time I truly considered giving up on Micah. I was absolutelyl stunned to be hearing that the best advice that a trusted professional could give me was to give up. I had not yet learned that this was a common theme of my son's life. That first time, we decided to take it to a genuine family vote. We sat all of the children down and told them what the therapist told us. We also told them Micah's prognosis. In that moment, when I did not yet love this child, it was his siblings who reminded me what this was about. Unanimously, they voted that we would keep Micah and we would love him, no matter what the future held for him and us.

On that day, I promised my son that I would walk EVERY STEP of his journey with him. I promised him that when the day came for him to leave this world, I would be right beside him, holding his hand. I did more than keep that promise. My son died in my arms, as I released him to eternity.

Death is ugly and messy. CF deaths are even worse than normal death. Those who didn't love Micah DID run away from his death. I sent E away from his death, not because she didn't love him but because staying was destroying her. No one paid me to stay beside my child to his death. Quite the contrary, just like what was frequently counseled during his life, I was repeatedly offered the opportunity to walk away from his death. My sister offered repeatedly to pay to place him in an inpatient hospice facility so others could deal with his dying. His Palliative Care doctor offered to admit him to the hospital and put him into a sleep that would last unti death came.

Every decision I made for Micah in life AND in death was motivated by what was in his best interest, not from obligation, not for an adoption subsidy and most definitely NOT to be praised by a world that still cannot understand my son. Everything I did was because I loved my son. Only a monster would ever dream of accusing me of not loving my son. No one with a shred of humanity in their soul would be so arrogant and cruel as to think it would be okay to seek me out and tell me that I did not love my son.

This family gave Micah what the world could not understand. We could not heal the lifetime of pain and abuse that came before us. We could and did love him. Micah was precious and loved by every member of this family. He knew he was loved, the one thing I feared he would die without knowing. In the night before his passing, he used his "I Love You" song to tell me that he loved me. His last clear sentence was to tell his Daddy that he loved him. Micah was precious because he was our gift. He was loved because he deserved no less than every other child on the face of this earth, nothing more and nothing less.

If you cannot understand my son and my love for him, then just do the only humane and compassionate thing you can do. Walk away. I don't require any person watch my pain. I will demand that no person mock my pain, though.

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