When Life Hands You Rags, Make Dolls

Just a note to document the unveiling of the new Legacy Page program at the Trisomy 18 Foudation. I enjoyed working on the beta testing for them; helping work out the bugs & kinks before they presented it to the public.

Working on Anne's page has been a long tedious, painstaking process. Writing, rewriting, multiple edits. I want to be pointed in confronting the medical politics without being tremendously attacking. The hospice people we worked with were only "doing their jobs" and thus I didn't want to make the failures in the system be too pointed at specific persons. Abigail's story, on the other hand, is a whole other ball of wax--there were specific individuals that caused her to die and God knows their names! I pray for just desserts. In Anne's case it was the system of medical ignorance that aided in her early demise--according to God's justice & mercy, they too will be held accountable. Oh those who side with the "system" will blame the trisomy, but those who know better know that the cards were never stacked in her favor and decisions were made that did her no earthly good. Just as with Abigail, it upsets me that we didn't look for different providers. I'm bothered by the fact that our minds were so muddled by the situation that we didn't think to question their authority. Who died and made these people god? Ultimately, I take full responsibility for their failures simply because I'm the one who didn't challenge them more directly--like I should have.

Anyway, Anne's Legacy Pages is noted in my sidebar and I thank everyone who visits and signs her guestbook.

Here's another article I came across yesterday. The writer speaks the same passionate voice as mine, so maybe I'm not just half-cocked and ultra insane...

http://www.lifeissues.net/writers/val/val_29disabilities.html

Spring Sadness

We got some terrific rain today. And then the sun came out and all the earth seemed to rejoice. I put a bouquet of artificial daffodils together for Anne's headstone. Abigail's bouquet is pale pink roses that are surprisingly beautiful for artificial flowers... not quite the pretty new Easter dresses that I'd rather be getting ready for them. I have a couple of cute ceramic chicks and a couple of sleeping bunnies to take to them as well. Plus, I've got the bitty resin bunnies that look like real chocolate rabbits--I found them last year and since they're resin, they pack away to use again for many Easters to come. And I found the cutest bitty bobblehead lambs & ducks to bobble in the breezes of the baby yard at the cemetery where the girls are buried. Easter toys and embellishements not at all like a shiny new pair of patent-leather shoes. I've wept a lot the last few days as I've gathered the Easter basket things together--the Easter basket for my girls consists of headstone polish, electric lawn clippers, and various trinkets to place upon their granite shelves that are inlaid in the sod. The season, the weather, the holiday, and Anne's 2nd birthday all weigh very melancholy on my heart. Sigh

Spring Madness

NY Times article on perinatal hospice options
http://www.nytimes.com/2007/03/13/health/13hospice.html?_r=1&oref=slogin

I came across a situation that adds to my frustrations & angst in this whole early termination dilemma. A gal in my pregnancy & child birth circles came up with a poor prenatal diagnosis and chose an abortion over carrying to term. I had privately sent her several perinatal hospice options prior to her appointment, and I gave our time with Anne as a testimony of how worthwhile the carrying to term option can be. But she made her choice and bemoaned the loss of her child the same as if he'd been miscarried.

The problem that troubles me is that the drs botched her D&C, so now she's markedly upset--infection, scarring, potential for infertility and additional pregnancy loss have landed right in her lap. She had to go back in for another surgery & hospital stay. She blames the doctor.

And my first reaction is, "why'd you kill your baby in the first place?" You put yourself at risk. You put your future children at risk. You ended precious time that you could have had with your sweetie. You claim to miss your baby so much, grieving a mother's grief as if you'd had a natural & spontaneous stillbirth. And yet you know it didn't have to be this way. You had a different choice but you didn't want to chose that. You chose this and now you're mad. How do I support that? You call me the hard-hearted & callous one because I don't sympathize with your plight. Why did you do this to yourself expecting me to be supportive?

Like Michael Jackson, you cut your nose off to spite your face. The whole thing gives me a pit in my stomach. What sort of people have we become that such a thing is seen as the "better" option?

A Soul Worth Fighting For

The gusty & unmerciful winds are a dramatic reminder that the season of Anne nips at my heels. Try as I might, I cannot outrun it.... ahhh, the joys of learning to live with a broken heart...

...all we are is dust in the wind, right? moments in time that hardly matter to anyone once they've slipped away. Does anyone even notice the individual grains of sand in the hour glass? or how important each one is to the whole? The world spins & spins and, really, what does any of it matter?

My entire countenance is so distraught. I need to ramble and spin words of heartache. I've been thinking a great deal about this intrauterine suffering thing--the justifiable keyhole, that to some, makes it a noble and responsible thing to end a child's life early. The notion crushes me because it thereby implies that I am selfish and would willingly inflict suffering upon my child by taking her to term. Many have said that waiting to see what God would do rather than take things into my own hands makes me cruel.

No matter how hard I try, I cannot brush away all the countless people in this world who would have disposed of my child had she been theirs to dispose of. It's weighed very heavily upon me, especially this last week or so as we finally get the final working of getting Anne's article published with http://www.benotafraid.net --going through her pictures and remembering her soft presence. Today's BNA cover story is especially gripping and hits me right where I live. I'm overwhelmed with the notion that there is coming a day when a woman will have to fight for her right to carry to term. The medical & cultural pressure to terminate a defective child is already all-consuming. Poor little Anne never stood a chance...

And for as cruel & selfish as they would say we are for carrying such babies to term, I can't help but get bogged down in how utterly cruel they were to deprive her of her right to live--how alone and on her own she was in the eyes of medicine. The vast sea of people who think it all for the best...

Sadly, the carrying to term movement is faced with so many challenges. I occasionally participate in an online carrying to term support group. Many of the women have born severely birth defected children--dwarfisms, choromosomal errors, all manner of things to go wrong in the early weeks of fetal development. Of course they all are met with pressures to terminate and guilt & shame for allowing their child to suffer needlessly. Many of them have to literally fight for medical care once the diagnoses are made--drs dropping them as patients the mintue they refuse an abortion. Several of the women have miracle babies who have defied every medical odd. They too have had to fight for medical care for their children, since most medical providers take a euthanistic perspective. Ironically, none of them is every sorry they carried their child to term, even if their baby dies during birth or shortly thereafter. The love & joy & peace that's met in their children is what it's all about. God forbid medicine would actually present carrying to term as the first-line option, and several are the stories I've read whereby carefully disguised hospice-induced infanticide has been presented as an option (for children that are alive and thriving). And yet I thought medicine was supposed to save lives, not take them. Nope, poor little Anne didn't stand a chance.

It's just so heartbreaking that the medical model often sees parents who carry to term as ignorant, religious zealots who are selfish and willing to inflict unnecessary suffering upon their child. They miss the whole point of the human soul--the preciousness of the human spirit that is here one day and gone tomorrow, and yet eternally valuable to the heart of God.

My baby Anne had a soul that was worth fighting for, no matter what the condition of her body--even if no one else in medicine, government, religion, or culture agrees. I had a responsibility to God--the Giver--to give her soul as much of a mother's love as she deserved--and she deserved so much more...

My Abigail may very well have suffered dramatically as she smothered to death inside my womb. I could make myself sick contemplating her suffering. But I trust that the God of Abraham, Isaac and Jacob held her in His comfort. I trust that He was merciful as she crossed over to the Other Side. I trust that she is happy & so very grateful to have had as long as she did tucked under my beating heart--and how she deserved so much more...

Call me selish & cruel, but I will never ever understand a mother who takes the preciousness of time away from her child...