Friday, September 25, 2009

My Response to Termination Reasons

I recently jumped into the fray of a discussion on babycenter's Abortion Debate: A Fair Approach. The thread was started by a woman who wanted to explain what late-term abortion was really about. She shared her experience focusing on the fact that all the women at Dr. Tiller's clinic were terminating wanted pregnancies and had received news about horrible medical problems with the baby. The original poster did not share what diagnosis her little one faced. Here is the response I posted:

I cannot pretend to know what it's like to have my baby prenatally diagnosed with a fatal condition. That is a road I haven't walked. But, the majority of terminations for medical reasons are for T21 (or Down syndrome) and that is something I can speak to.

In listening to women discuss why they chose to terminate for Down syndrome, I'm struck by how untrue their reasons are, or at the very least, unknown.

1. My baby wouldn't have a normal life. What is the definition of normal? If it is to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then this reason is false. We are seeing persons with Down syndrome accomplish this and much more.

2. I couldn't let my baby suffer. Suffer? Really?!? Have you seen the pics of the kids on the Down syndrome board? Have you ever met a person with Ds? This is a group of individuals who embrace life, and expect you to do the same!

2b. My baby had a heart defect and would've needed countless surgeries. An estimated 50% of kids with Ds have cardiac issues, but many of those will never need surgery. Of those that do, the most common problem is an AV Canal defect (also one of the most serious). However corrective surgery for this is so common that it is often referred to as "routine" and boasts a success rate in the high 90s. Heart surgery is not fun. It is scary for all involved, but most of us found waiting for surgery to be much more daunting than the actual event. Pediatric hospitals are experts at pain control and keeping our little ones comfortable. Most of our heart kiddos will not need another surgery and the average hospitalization is 5-7 days.

3. We decided it wasn't fair to the child/children we already have. The first person to congratulate us on the birth of our son was a man whose brother has Down syndrome. He said, "Your children are about to know a love like no other!" Siblings are a gift, regardless of the number of chromsomes they have. There may be more appointments and therapies for the child with Ds, but it's not an either/or proposition. Our youngest is just one of the bunch. He gets therapy; the others get sports or piano lessons.

4. There will be no one to care for our child when we are gone. Because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. That support can come from friends, neighbors, or social workers. Unfortunately, as the average lifespan for a person with Ds is only 50-60 years, it is possible that you will outlive your child, as well.

Of course, there will be exceptions to what I've written. Life is full of exceptions and completely lacking any guarantees. Those are the unknowns that I referred to. But, we face unknowns with our typical kids every day. I had no idea that my typical daughter would fall from her crib at 2 years old and break her leg, requiring surgery; or that my typical 9 y.o. would struggle with dyslexia and ADD. There was no prenatal test to inform my friend that her 4 y.o would develop a tumor and require the surgical removal of a kidney and countless hours of chemo and radiation.

But, like Down syndrome, the above challenges are just a tiny part of life. We just do what mothers do - we take them one day at a time.

Wednesday, September 23, 2009

Down Syndrome Clinic

We had another appointment at the Down syndrome clinic on Monday. Good news all around. First, we don't have to return until Simeon is one year old the end of January! Second, his weight is good at almost 19lbs, but not so high that we're worried about the added cereal in his bottles. Third, Dr. Stanley agreed with me that we should postpone his feeding study for a few months.

He will have a video feeding study around 10-11 mos. where we can look at how he does with thicker foods, as well as thin liquids. My hope is that, as he continues to be upright more and strengthens his trunk, he will be more apt to pass the study.

We also reduced the dose of Zantac that he takes for silent reflux and eliminated his iron supplement due to a clear CBC.

Developmentally, he's doing great! I have no idea where he is in relation to typical kids - he's just Eon, ya know? (Athough, with six kids, you'd think I'd have more of a clue:) At one week shy of 8mos., he is able to:
  • Prone pivot - move around in a circle while on his belly to get at stuff; starting to move out of the circle, too, although usually backwards which frustrates him.
  • Sit unsupported for a few minutes at a time - I still can't walk away, yet, but it won't be long
  • Babble consonants - mamamama, dadadadada, blablablabla
  • Bring everything to his mouth, pass toys from one hand to another, and hold a toy in each hand
  • Push up with straight arms when on his belly, and just started to try to get on his hands and knees (needs a lot of work)
  • Roll both ways
  • Laugh hysterically, and throw a hissy fit when someone takes his toy

He eats about two jars of stage 2 baby food per day and is starting to think it's really funny to spit it all over his momma. :)

I never noticed these milestones with my typical kids. I didn't even know that prone pivot was an actual term or that it was desirable to hold a toy in each hand. Because each milestone takes a little longer to acheive, we celebrate them more. It's a good thing!

Friday, September 18, 2009

Advocacy and Exhaustion

I generally wear my heart on my sleeve. I'm very real about my life, thoughts, and emotions. I'm terrible about erecting walls. If you are not, you might be tempted to think that this is a good thing. Let me quickly assure you that it is not. With increased vulnerability, comes an increased risk for woundedness. One of my greatest fears is to be misunderstood.

It happened yesterday, in a group, of course. I felt attacked and retreated, but lost the opportunity to clarify, to be understood.

I returned home to lick my wounds and wonder why it had hurt so much. Why did I care so much what those people thought of me?

The conflict had nothing to do with Eon or Down syndrome, and yet my response had everything to do with them. I overreacted because I've been living in a state of high alert. I am constantly on the look-out for ways to advocate and educate.

Being the mother of a child with Down syndrome is much harder than I imagined, but not in the ways I thought it would be. Parenting Eon is a breeze! He is the easiest, most content, delightful baby I have ever had. Unlike my typical babies, I never tire of caring for him or meeting his needs. He is a complete joy!

But we live in a hateful, selfish world. I read wonderful articles advocating for people with Ds, and then scroll down to read vile, nasty comments. There are many who strongly advocate that aborting a baby with Ds is, not only acceptable, but rather the only responsible choice. There are many who are simply ignorant of today's Ds, and doggedly hold to the "what happens when you're gone and the siblings will have to care for them?" mentality. There are many more who are concerned with the monetary cost to society as a whole, a sentiment sure to spread like wildfire when the government gets through with healthcare.

The first group always shocks me, the second irritates me, and the third scares me.

And so, I continue to educate and advocate. But I get tired of the process. And he is only seven months old. I will be doing this forever. But not today. Today, I'm going to lick my wounds and hold my boy.

Monday, September 7, 2009

After seven months of intense drama with questions about faith, fear, and suffering, and physical, emotional, familial, financial, vocational, and spiritual changes, I'm finding it difficult to just live normal life. The mundane is boring in its blandness. I find myself having conversations about curriculum or cooking, weekend plans or vacations and walk away feeling hollow. Topics that used to rev me up, leave me somehow dissatisfied.

Before you suggest it, I am not depressed. I have been there and this is not it. I love life and feel as if I have just emerged from the longest postpartum period of my life. I look forward to each day, laugh often, and cry little. I am grateful for all the things God has so graciously given me.

I do wonder if I've become an adreneline junky. I don't miss the hospitalizations, surgery, or the newness of a Ds diagnosis. But, with all that came a passion to grapple with the tough questions, to wrestle with my faith, to solidify my thoughts, and to dig into the Bible and see it come alive. With it also came a passion for a segment of the population that has an extra chromosome and, because of that, will never make it out of the womb alive; and a passion to bring home those that have survived the womb, only to be born into a country that refuses to see their value, and sentences them to languish in mental institutions.

My other passions - to know the heart of my savior, Jesus Christ, to love and train my children for His glory, and to love and respect my incredible husband - are still alive and kicking. But other things that used to seem important - grocery lists, vacations, enrichment activities, TV shows, popular music, etc. - pale in comparison. Unfortunately, the latter seem to make up the fabric of our society, so I find myself on the outside of the camp. The tedium is too much for me.

I don't have a solution. I'm just sayin'.