The Dad and Down syndrome

My husband, Shawn, is the best! We have been married for sixteen years and have six children aged 12, 9, 5, 4, 2, and 8mos., three girls first and then three boys. He has welcomed every child with open arms and Eon is no exception.

When I was pregnant and told that our baby had a 5% chance of having Down syndrome, Shawn took it in stride and said we could deal with whatever comes. When, however, a mere minute after birth we were confronted with the reality of Ds, we were both a little taken aback. All the color drained from Shawn's face and he appeared completely stunned. While I was instinctively trying to remain positive so that no one would issue the dreaded "I'm sorry", Shawn just stood there looking shell-shocked. I had to direct him to take pictures. The air had left the room and he moved rather woodenly to complete the task.

I recovered quickly. As soon as they finally let me hold our boy, I knew it was going to be ok. I was instantly smitten! While I nursed our little peanut, the nurses finished their clean-up, filed out, and we were left alone. Neither of us spoke. I attempted conversation, but everything fell flat, so I remained silent...and prayed. I knew then that if Shawn would just hold him, he would recognize the truth - that he was a gift, that we would be fine, that we could do this.

So, after about 20 minutes, I asked him to hold Eon while I buttoned up. He complied out of habit, but no real desire. He moved across the room and sat in a chair, and stared out the window. I watched him and prayed some more. Finally, I saw him looking at our baby. Pretty soon he was whispering things to him. I'll probably never know what they discussed, but after awhile, he looked at me with renewed strength and asked, "Ok. So what are we dealing with here?" Relieved, I shared everything I thought I knew about Down syndrome. When I completed the list, he grinned and asked, "So, one day at a time?" Exactly.

While I have waffled at times in my resolve to embrace Down syndrome, Shawn has never looked back. He is proud of his third son for everything he does and everything he is. I have read that fathers have a particularly tough time accepting this diagnosis for their sons. I am grateful that my husband is not one of them. I worry about Eon's development, health, future, etc. and Shawn just enjoys him. I share my concerns that I am not offering enough stimulation or doing enough therapy, and Shawn doesn't hear me...he's too busy exchanging belly laughs with his boy. He fully embraces all that makes up Eon, including his extra chromosome. He truly takes our life with him "one day at a time." I want to be more like him.

Next step?

Eon is doing great in his gross motor development. I am so proud of him. I think a huge part of his success is his amazingly positive and knowledgable PT, Jill! She is a gem! She is his biggest cheer leader and I joke that he could be laying in the corner like a blob and she would think he was super. :) I once brought up my fear that he would "butt scoot" instead of crawl and she looked at me all aghast and exclaimed, "I have never had a child butt scoot!" I guess we don't need to worry about that.

As he grows and matures, I am feeling like it's all happening too fast! Which, of course, is silly because the reality is that he's hitting milestones in slow motion compared to his typical peers. (I guess....I don't really pay attention to the "norms"). But, I worry that I'm behind.

I want to research vitamin therapies and supplements. I intended to have already decided whether to get the "Love and Learning" or the "Your Baby Can Read" programs and still haven't spent any time on either of them. I've only purchased the first "Baby Signing Times" dvd and only know about 4 signs from it. The kids know all of them, of course. And, I read a thread today on the use of flashcards on Babycenter's Ds board, and I have no idea what they're talking about! But, it sure sounded like I should.

Ack! I can't keep up! And he's moving slowly. I do this every once in awhile. I panic thinking I am not providing all he needs. Then, I realize that he's doing great and being "one of the bunch" is something that he needs and we have that down pat. Balance is key and I don't think I've had that since baby number two!

In other news, he learned to drink from a straw cup, yesterday. How cool is that?!

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.

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!

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.

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'.

Just a baby

Last week, we had our first meeting of the year for our homeschool group. Our family was basically MIA for the spring semester last school year because of Eon. Our group was kept updated on Simeon's birth, diagnosis, subsequant hospitalizations and surgery via frequent emails from a friend and fellow member. I took Eon along to the meeting and it was the first chance many had had to meet him.

Generally, the comments were of the "he's so cute" and "how's he doing" variety. But one gal really surprised me. She stopped to chat and tell me that they'd been praying for him. After asking the usual questions and watching him for a bit, she shocked me by saying, "Oh! He just makes me want to have another one!"

It took me awhile to realize why I thought that was so cool. I think it's because she saw Eon as a baby, first. And second, it's because she not only totally accepted him, she'd be just fine with one of her own. Of all the women there, not one other woman looked at my baby with longing. But she did. I can't tell you how it warmed my heart.