Fell Down Today

A little something for Poetry Friday



Fell Down Today
I cannot cry, for if I do
Some one will say
Have you ever seen a child
with or without a this or a that
to make him whole?
Back to the truth
I cannot go, for if I do
My mind will say
Have you ever noticed that
a whole with no W
is just empty space
deep in my heart?
Fell down today, so down today.


Thanks Raffi for your endless inspiration.

I Don’t Need Your Ruby Slippers

It has been a rough couple of weeks thanks to the shooting death of Dr. George Tiller. By now you have probably heard of him... provider of the late term abortion. The blog-o-sphere has been burning with his name and the stories of his clients who traveled to Kansas to give what only he would take.

As many of you know, I am pro-choice. And, even if I did have a momentary lapse after looking at pictures of first trimester abortions, I have recovered. Because being pro-choice doesn’t mean that I have to think your choice (or mine) is good or even appropriate.

But if you are going to do it, be honest with yourself at least. Aborting a pregnancy, terminating a pregnancy, pregnancy interruption, losing a baby, letting it go, saving your baby from a “lifetime of suffering”... it all equals the same thing... choosing to end your baby’s life. That is a death sentence.

And I would do it.

You read that right. I know what it is like to be sitting in a doctor’s office with a belly full of broken baby. The difference was that, in my mind, my imperfect baby did not merit a place on Gordo’s broken baby list. He writes,

“If anything, late-term abortions should be less offensive, since they’re so often performed in order to save a woman from having to carry a fetus to term who has one of the following horrific conditions”

He put T21 on his “save me from this horror” list. He put my sweet baby on the hit list. When I let him know that Down syndrome is not a “horrific condition” and not worth a death sentence, he told me I must be lying about being pro-choice.

I am not lying. There are conditions on his list that I might not accept for my child. No, not the ones that are incompatible with life, like T18 or Potter’s syndrome... the other ones... the ones that are compatible... but are so very hard to live with. The truth is that I don’t know what I would do. And I will venture to suggest that you don’t either. Unless you are one of the few amazing parents out there who now know for sure, you just can’t sit back on your couch and speculate that you would choose life for any baby under any circumstance.

And why might I choose to terminate my baby? Because I am scared, selfish, ashamed, guilty, horrified... Because I have convinced myself that “letting it go” is “saving it from a life of suffering.” (Mainly my own suffering, but don’t tell me that.)

Or because I believe there are circumstances where people are better off dead.

Or because I read too much crap on the internet.

So let me say it again here on the internet, Down syndrome does not merit a death sentence. Doctors who deliver doom and gloom with a Trisomy 21 diagnosis do a terrible disservice to parents who are going through a very hard and very susceptible time.

Is my T21 girl a slow learner? Yes. At ten months old, it took her at least twenty readings of a certain book before she caught on to the game “How big is baby?” and she only throws one arm up into the air while squealing with laughter. I appreciate those who would take me to Kansas to spare me this horror, but thanks anyway, I can live with it.

We're Not In Kansas Anymore, Toto

I recently wrote a post, Not Like This where I explored my feelings about how hard it would be to have your baby die in a very busy, very public situation, like a NICU. What I didn’t tell you is that my husband and I had to go through the mental exercise of making decisions about a Do Not Resuscitate order and removing our child from life support. We had been counseled that it was better to know what you would want to do prior to a situation arising, than to be forced to make huge decisions in a highly-charged emotional state of mind (uh, yeah, like I wasn’t already in that state of mind...)

Take a minute to try to imagine your child being kept alive by a ventilator... his brain’s neurons no longer firing or his heart beyond repair.

It wasn’t hard for me to conjure up. Not even two weeks earlier the mother of a five month old baby girl who had aspirated on spit up during a nap, brought me in to “meet” her child... a baby who was alive now only because of a machine that pushed air in and out of her lungs. There was no need for the t-bone clip to keep the vent in place because this baby wouldn’t fight the tube... this baby would never fight anything again. She looked like she was sound asleep. If only.

Standing there, I remembered with guilty intimacy the guttural cries that had come from this young woman just days earlier when the neurologist broke the news to her that her baby was brain-dead. “No,” she had wailed, “noooo, noooo, noooo” Over and over and over again the protest rose from deep within her, and it had sunk and curdled inside of me. It happened on a Friday night around 9 p.m. My own sick baby was asleep in her PICU crib. I heard that sound, that mother’s anguish, and I had to leave. I went home. I could go home, but I could never abdicate my involuntary and unfortunate role of witness.

My husband and I pretended to make up our minds about various scenarios. I won’t drag you to tears with all the details. I’ll share just one. I would be the one to do it, to take the vent out. Because I couldn't live with the memory of someone else doing it.

So what’s the difference between Dr. Tiller, the respiratory therapist that extubated that five month old and ended her life, and me? If the situation is one where the baby will, without a doubt, not be viable after birth (off the mommy-vent), then is it so wrong for the parents to want a private death?

Inside this Body

Can you guess why my beautiful girl is singing? Because she knows that she holds the key to curing cancer.

If we as a culture had successfully killed off all fetuses with Down syndrome, the cure you may someday desperately need would be that much further out of reach.

While she has meant the world to me since her arrival in it, I am so pleased to think that her existence, and that of those like her, may bring about the greatest and most elusive cure in modern medicine. Let’s hear it for that extra 21st chromosome!

Prayer #2847

Through the years I have often wondered about prayer... what to pray for, and if it really matters. My prayers started off fairly simple in the early days, "Lord, if you take away this hangover, I promise to never drink Mai Tai cocktails again." Eventually I stopped being so self-centered, "Lord, please keep Cute Boyfriend safe on his motorcycle."

Time wore on and I began to pray more consistently for things I deemed important... someone’s health, marriage, salvation, or the outcome of a court battle. I wondered if those prayers made any difference. It was hard for me to have faith when the conversations seemed so one-sided. Even when things turned out the way I wanted, I still wondered, "Was it always meant to be this way or did my prayers influence the outcome?"

When I found out that the baby I was carrying had a massive heart defect, and that it might be an indication of Down syndrome, I wanted to pray the right prayers but had no clue what they were. Should I pray for a miracle... that the baby’s heart would be fixed in utero and that there would only be 46 chromosomes? Why not.

He answered "No" on both counts.

I prayed that she would eat, that she would heal, that she could go home... "No, no, no," He said. Everyone else prayed too; family, friends, church acquaintances, strangers... hundreds of people, all praying a prayer that, summed up, sounded like, "Let her live."

But after weeks and weeks, it was looking like we were going to get the ultimate "No". And this got me to wondering about my relationship with God. Isn’t He my best friend? Doesn’t He love me? Doesn’t He want only good for me? Let me tell you, if I had any other friend who had the power to save my daughter’s life with one breath of their attention, and they chose not to, well we wouldn’t be best friends anymore.

Did those prayers matter at all? Was she destined to die on some predetermined schedule?



When king Hezekiah was deathly ill, Isaiah told him that the Lord said he would not get better, that he would die. When Hezekiah heard this, he turned his face to the wall and prayed to the Lord, "Remember, O Lord, how I have always tried to be faithful to you and do what is pleasing in your sight." Then he broke down and wept bitterly. God tells Isaiah to go back to Hezekiah and say to him, "I have heard your prayer and seen your tears. I will heal you... I will add fifteen years to your life..." 2KI 20:2-6

Well, Hezekiah’s prayer made a heck of a huge difference, now didn’t it. Hence, I kept on praying for her life. Somewhere around prayer #2847 on her behalf, I realized that I was missing something. You see, I was still mad at God for not performing the miracles He could have. And all those "nos" were starting to make me question my faith altogether. What would it mean for me and God if He let her die? Could I still trust Him, love Him, believe in Him?

Thus, prayer #2847, "God help me to accept your decision concerning my baby. Help me to forgive you if you take my daughter back. Help me to not let my broken heart stand in the way of our relationship. Help me to let go and let you, even though I can’t understand why."

"Yes," He said, "I’ll give you that." And, finally, I felt peace inside.

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Not Like This

On occasion I have given thought to how I might want to die. The results of such mind exercises are always the same; an unexpected bullet to the back of head or I fall asleep one night and don’t wake up. I don’t end up in the hospital in either scenario, nor do I have a chance for goodbyes.

It is one thing to imagine from the bleachers, beer and hotdog in hand, how you will be "out" but quite another thing to actually be the player in the game who is facing another strike. It is even worse when it is your child going up against the pitcher, instead of you.

During the early days in the hospital, I did not genuinely feel that my child could die. Yes, she had a major heart defect, but there was a plan for this in place. When her second, more menacing heart defect was detected, I felt the pressure of possibility weighing down on me.

Within days of that discovery, my baby became very sick, the kind of sick that made her whole body seize. I could hardly stand to leave her, but there was nowhere to rest my head in that place. So I would sob in the car all the way home, wondering if she would be ok.

But I hadn’t yet felt the reality that she might die. Oh, I was scared of it but deep inside I still had that nebulous sense of that not being something in my world. Like it just wasn’t part of my brain’s schema.



The call came around midnight. The caller id flashed straight into my heart... the NICU. Just the ringing was making me shake. We were afraid to pick it up. When I did, the very first thing the doctor said (blurted out) was that my baby was ok. They wanted to do a lumbar puncture and needed me to come down and give written permission for the procedure.

For the first time, but not the last, I wondered how they tell you that your baby has died.

A week or so later, my baby girl stopped breathing in my arms and the reality of it sank in. Suddenly there was a whole new category of thoughts in my brain. The tentacles of horror crept up my legs and arms, and twisted around me, squeezing me tight.

I am an emotionally secluded person. Because of this, my husband and I were married in a secret ceremony ten months before our white wedding. For me, promising the rest of my life to my love needed the privacy that such an intimate moment deserves. My child’s return to God would require that same sort of privacy.

You won’t get that in a NICU or PICU. Every time my daughter’s body would begin to fail, a swarm of doctors, nurses, and respiratory therapists would come and "work" on her. I would stand out of their way and pray, "Not like this, Lord, please not like this." I wanted them to save her so badly I could taste the coppery ache for it in my mouth.

Because if she had to die, I wanted it to be our little secret. I did not want any other person to share it. I wanted to be alone with her... holding her, kissing her, and whispering love in her ear.