Back In The Saddle

Thursday, April 19, 2018

I must admit, I’ve been all stopped up when it comes to writing.

I have been for almost a year now. The more I tried, the more overwhelmed I become.

Last year when the Charlie Gard story unfolded I began to feel a little lost.

You see — in the beginning, my writing had very little to do with abortion. It began as a grief journal for my little daughter. So when I saw Charlie’s parents fight so hard, and then lose, I was deeply affected. I felt like I’d lost my Bea again.

I stopped writing posts for other loss and/or pro-life advocates. I stopped working “behind the scenes” for any efforts at all. I stopped trying to push the message out there, even though it’s a message I believe so strongly in.

Charlie Gard’s story made me take stock of my position.

I understand he was not carried to term — his parents were unaware of his condition until after birth. They may even be pro-choice. But the situation they found themselves in was analogous to the situation many parents given prenatal diagnosis face, after their baby is delivered: doctors refusing to treat their child with a poor medical prognosis based on personal ideas about “quality of life”.

My own experience with carrying Beatrix led me into this part of the prolife realm. I was shocked and disappointed when my physicians showed little interest in giving her the best chance at living. However, my daughter's chances for survival were almost non-existent, so I (kind of) accepted this and moved on.

Then I read stories of children who were less-affected than my Beatrix being denied treatment, and I realized I was witness to a very subtle form of discrimination being cloaked under the umbrella of “compassionate” care, most often by people who had no understanding of what being the parent of such a fragile child, entailed.

Most disturbing were the stories of babies being denied care in one geographic location which was standard in another, based on their potential intellectual abilities.

In many cases, when a family learns their child will be born with a serious birth defect, but decides to continue their pregnancy doctors often encourage them to use palliative care only after birth — questioning whether curative surgical procedures are really necessary for a child who will never attend school, get married, or have his/her own children.

I learned that when families insist on treatment for their affected child, medical professionals may become passive with “slow codes” and DNRs placed in charts without parent’s knowledge. This enraged me, and my writing became a shout for babies with serious congenital anomalies. This is my passion.

Everyone has a right to their own life, lived on their own terms — no matter how long or short the life is, or what their intellectual capabilities are.

But I didn’t know how to write about this any more.

Because the only appropriate words to use are words like “euthanasia” and “eugenics”, and when people who are involved in this “branch” of the pro-life movement use these words, we’re ridiculed as crazy conspiracy theorists.... the words themselves have become linguistic kryptonite, effectively invalidating any rational argument we make.

This leaves me at a loss because these words have relevance. What do you call a philosophical system which places those with intellectual disabilities on a lower rung of the treatment ladder? What do you call a legal system which allows discrimination against those it seems less worthy?

Here in the US we watched as the NHS ended Charlie’s life, and the same people who fought for Charlie and screamed about the injustice of it all continued praising our American system for being more compassionate -- but it’s not.

Our laws allow physicians to override parents wishes for their children as long as they can keep it a secret.

In addition, a friend of mine who tracks state-level assisted suicide legislation, shares information showing that in nearly every potential assisted suicide law there is
a clause which would allow for the euthanasia of persons with disabilities.

I don’t know what to do with this reality; what words to use to avoid accusations of idealism.

What arguments can we use to avoid being called alarmists?

As the old saying goes, just because you’re paranoid doesn’t mean they’re not after you.

It’s disappointing.

Because in the last few weeks another similar situation had come to fruition in the UK (actually more than one situation like Charlie Gard’s is being fought in European courts right now. This refusal of service is common in the UK. Some families didn’t even make it this far before their children were removed from life-support, against their wishes).

The parents of baby Alfie Evans are being pulled through the legal system because doctors refuse to release him to another hospital, and his family refuses to give up. The proceedings have been stretched out long enough to endanger the child involved, so physicians can then claim he is too deteriorated to respond to any care. The judge has ruled against the parents, and everyone involved gets to go home while these poor parents are left alone with their son who they’ve got no right to even touch, in some instances.

If he does pass away, those in charge will mumble and shake their heads and talk about how unrealistic the child’s family is. Another family will go home with empty arms wondering why they weren’t allowed to treat their child.


This child has no official diagnosis, is responsive to stimulation, and has physicians in a different hospital willing to try an experimental treatment on him (see here what the term “experimental” means for a baby like Charlie or Alfie). This child is alive, and has already been denied medical care which could improve his situation.

It’s appalling.

I’ve asked before — who decides? While a physician may believe they are acting in a child’s best interests, who are they to decide no other physician may care for the child (especially against parents will)? These parents are asking for a medical transfer for their son. They’ve fulfilled every one of the hospital’s requests.... yet, just like with Charlie, Alfie remains in limbo.

How many children does it take before we wake up?

Or is it acceptable as long as it’s only disabled children?

Do we brush it under the rug and pretend it doesn’t happen, unless it happens to us?

Do we continue to turn away, convinced those who cry out against this are fanatics, or out-of-touch with reality?

As I said in the beginning, this last {almost} year left me heartbroken and completely disillusioned.

But — then I saw THIS!!

And this beautiful boy, who’s parents were told he would not thrive, is verbalizing and trying to walk.

Even seven years ago, when I was pregnant with Beatrix, I couldn’t find any children like him on the Internet. Whatever anyone says about Facebook and analytics and sharing secrets, social networking has built a vast “underground” of parents committed to seeing their children live the best life they’re capable of.

I am a part of that.

My daughter was one of their children, and whether people view it as nutty or not, her life was so much more valuable than to end up being the after-story of a sad pregnancy.

There is so much to do and say in terms of coming legislation, and fights going on all over the world- and I don’t really want to sit it out.

There’s something I’ve heard Jewish people say, when someone dies:

“May their memory be a blessing”.

I’ve never looked deeply into the deep implications of this statement, or what context it has in Jewish culture— but I will say that on its surface it speaks to exactly what I want for my Beatrix. Her memory should be a blessing, a deep and fruitful blessing, for anyone who comes into contact with her story.

So for Beatrix, Charlie, Simon, Cassie and all the other inspirational babies who have given up their valiant fights: I’m rededicating myself to working hard to making sure no parent ever feels the way I did when I said goodbye.

If you or anyone you know has an interest in learning more about current laws which put our most vulnerable as risk, please let me know.

If you have questions about how these laws {or how a lack of laws} in your area, affect your family, please let me know.

Lastly: Over the years I’ve tried to fit into many shoes- I thought it was my job to “create” something, like other writers do- a how-to book, some crafty remembrance item, etc. I’ve learned that the organization and planning involved with these things isn’t my forte.

But what I can do: collect your stories. I have access to more than one pro-life group who would be willing to share your and your baby’s stories.

If you know anyone going through a pregnancy who has been given no hope, if you know someone who lost a baby due to passive euthanasia, or if you know someone currently battling with doctors to assure proper care for their child- please let me know. I can help you find the aid you need.

When I started this, I noted that most loss blogs went on for about 5 years, and I was determined mine would last for longer so people could see the “after-after”.

Heading on Year 8!

I didn’t think I would survive this long without her. Now losing the battle for survival after loss would be an obscenity against her sweet little name.

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