Keeping Christmas: Giving & Receiving Grace

Goodnees it's been too long since I've been here last. I've been so busy and anymore, my lifestyle speed is ultra slow motion--how to change that, I have no idea.

Working on Anne's Legacy page for the Trisomy Foundation has made me hate doctors even worse than I did--especially as many of my medications only serve to make me sicker. Where is our nation headed when our health care system is in such a shambles?!

I could be in both psycho & physical therapy for years trying to work out all the anguish the medical professionals have caused in my life. I live in a chronic state of PSTD and chronic fibromyalgic pain.

More specifically, as I've worked through the plethora of issues that surround Anne's death, I've come face to face with some serious issues over our medical & hospice experiences. Hospice had a memorial service not too long ago that invited us and then ended up totally excluding us--total drop the ball gig! It was the last straw in how disappointed both Brian & I have been with all manner of medicine and their so-called services.

In fact, their presence in our lives needs to come to an end--hospice, that is. But I have no idea how to "fire" them without coming completely unglued over how utterly exasperating our experience with them has been.

I remember the day of Abigail's funeral. My OB called to rub vinegar into my wounds. I ended up telling her off --in no uncertain terms I read her a liteny of all the critical ways she failed us--failed us to death, as a matter of fact! The university providers and their hospice team did the same thing with Anne, and it's just taken it's emotional toll in terms of being violated; assaulted--raped by a system that boasts so much pride!

Sure, God may have our days numbered, but mankind still has be be accountable for such concepts as "thou shalt NOT kill." Mankind still has to be accountable for their actions that cause other's lives to be ruined or ended.

Neither Abigail's nor Anne's death was merely an "act of God" --No, there were some handsomely paid medical personnel who had their hands in the outcome of both Abigail and Anne's lives. Praise God there will be a Day of Reckoning!

Yes, God may have had every precious moment of our baby girls' lives numbered. No doctor or nurse may have ever been able to alter the fact that LIFE IS TERMINAL and none of us gets out alive. But who among all those medical people exhibited actions that said they were dedicated to seeing my girls LIVE rather than die? Who put their medical ethics to work for LIFE? Which one of them dedicated themselves to making sure my children had as many precious moments to their lives as possible?

God may have taken their souls at the time He saw fit; but in His Book of Judgment, those who were in charge of my little girls' lives will still be held accountable to their errors that caused their early & untimely deaths. Even if man's "culture of death" ethics absolves them of any culpability here on earth, God will never absolve them without their genuine repentance.
I doubt I'll ever receive an "I'm so sorry" from any of them who have ruined my life or killed my children right out from under my nose--medical people don't apologize lest they find themselves in a legal quandry. And thus, they often deserve the legal problems that befall them.

I know as Anne's mother that I too will be held accountable for her life. I'll always have that gnawing anguish that I could have and should have done more for her. There are better doctors in other cities, why didn't I take her away from this medically ignorant state? I'll be held accountable as her protector for every way I failed her. I've riddled Heaven's doorstep with my pleas of sorrow & regret. Praise God I am forgiven all my confessed failures!

You can read my testimony about our medical experience at Anne's Legacy page at http://www.trisomy18.org/goto/anneelisebacon

I often feel like God gave me Anne to show me all the ways our medical mindset is set upon chosing death over life--she's taught me what it TRULY means to be "pro-life." Did we do all we could so she could have life? Did we believe in her; in her capacity to love & give & overcome? Did we really rally her to do her best?

No. We failed her in so many ways. I believed in her and loved her as best as I could, but still I could have found better people to care for her medical needs. I accept that as my failure in her life.

But to be certain, our "medical advisors" failed her most of all. And what hurts the very most is their inability to admit their failures; their inability to see how they contributed to the problem. Their presence in my life makes me feel violated all over again as they force us to stifle our grief with their excuses and justifications for why they think they're right. As God is my witness, I will never accept their "culture of death" theology!

As far as I'm concerned, Anne's life was cut short needlessly. Many will blame her illness. Many will not agree with my claim that Anne's medical advisors helped her die far better than they ever helped her live. Maybe our perspective is all wrong. Yea well, let those people live my life instead...