39 weeks

Today marks 39 weeks of this pregnancy, which means nothing more than we'll get to meet our baby sooner rather than later! (But hopefully not tonight - Matt managed to come down with some sort of bug that has him completely useless on the couch with a high fever and terrible aches. So I'm single parenting until he's better, and hoping to not go through labor while that's the case!)

Last night musing over Leah's birthday and birth, Matt and I took some time together to go through our first photos of all of the kids.

Here's our tiny little Owen Walter. He wasn't that tiny, but our smallest by a pound (which still puts him at more than twice as big as Krassi was at birth!) I had spent my whole life hoping to grow up to be a "mommy" someday, and Owen was the little one that made that dream a reality. Oh, how I loved (and love!) that little boy!

Owen at three days old

Leah Lynn was a big girl - 9 pounds - and I remember how very big she looked after Owen! Funny - when we were expecting Owen, I was nearly certain he was going to be a girl. I was wrong. With Leah, I was convinced we were having a boy, to the point that after her rather hasty arrival at the end (her heart rate was dropping during contractions, so my midwife told me I had to push the baby out all at once on the next contraction...so I did), a quick donning of the first baby cap they grabbed (which happened to be blue and not neutral), and my friend's cry of "there he is!" (intended in a generic sense), I held that baby girl in my arms, looked at Matt, and said, "I told you it was a boy!" Oops. ;) No, very much a girly. ;)

Leah, just hours after her birth

And then, last night, Matt and I looked at photos from Reuben's birth. And I cried. That birth was by far my easiest birth, and one I would repeat without any hesitation. (The others? Not so much. ;) Once is enough for each of those, thank you!) As I looked at those pictures, I was overcome by the knowledge that already right there, every single cell of his body, at its core, in its DNA, was coded abnormally, and had been since his conception. One of every pair of chromosome #20 was shaped not in a roughly linear way with all of its genetic information intact, but instead was missing the gene-rich ends and collapsed into a ring-shape.  Ring (20) chromosome syndrome is an unusual chromosomal abnormality in that there are not characteristic physical features. There is nothing we could know by looking at him, but it's all right there, staring us in the face. All of the challenges, all of the hardship for him that he will grow up and IS growing up taking in as his normal. It's all right there, but we couldn't see it.

Sweet baby Reuben.

 In keeping with my pattern, I was also wrong about Reuben's gender. I was certain he was going to be a girl. Despite that, we had only one name selected before Baby was born: Reuben Matthew - behold, a son, a gift from God. To me, one of the most beautiful things about Reuben's birth is that everything went so very smoothly that he was delivered right into my arms, snuggled up under blankets with me, and remained that way for an hour before we needed to do any of the routine newborn checks. I had been waiting so long to just hold this baby in my arms that I did not care who this baby was, boy or girl, I was content - more than content - just to hold this baby close. I have loved (and still do!) all of my children, but there was something distinctly separate about the unconditional nature of my love for this small child. I loved this baby simply because he was my baby - oh, the goodness of God to instill that in me for him far before we had any idea that this baby was not who we had expected him to be!

And here is where I diverge for a moment (or more) into thoughts that have been on my mind for a while now. March 21st was National Down Syndrome Day. (As in "3-21" - Down Syndrome is caused by having three instead of two of the 21st chromosomes.) I was reminded that day of the striking statistic that in the United States, 92% of babies with Down Syndrome are aborted. As I hear that, I think of how easy it is for us to decry the treatment of people with disabilities in other countries: institutionalized, marginalized from society, forgotten, essentially thrown away. But are we any better? Is just killing them before they're born really any different? It's more invisible, perhaps. None of us have to ever see those 92 out of 100 who are not allowed to live.

In the years since Reuben's chromosomal diagnosis (early 2012), this statistic has hit me more personally. If babies with Down Syndrome, a syndrome with a stereotype of someone who is always happy and affectionate are eliminated at a rate of 92%, what would be the survival rate for my son whose syndrome is characterized by aggression (toward self and others) and other behavioral challenges?

But beyond the personal connection I now have to genetic abnormalities and abortion rates, I think there is something bigger at stake here, which is simply the fact that we (who are alive) think we have the right to determine the value of a person and whether or not that person should be given the opportunity to live. Reuben has taught us so much as we are forced to look at things from a different perspective. One thing in particular that I realize I still cling to is the notion that someone has to have a certain level of comprehension to be able to know God. As I look at Reuben, I realize how disgustingly prideful this is. Who am *I* to think that *I* know enough to put my trust in God and rely on him as my everything. Does an infinite God really look at me thinking, "Oh, good - Andrea is smart enough to be able to put together all the pieces. She'll be okay." Whatever. In Reuben I am reminded almost daily of how utterly helpless we all are - how completely dependent on God's grace we are for the faith that he offers to us. Because despite his cognitive handicap, and his aggressive tendencies, and his extremely limited ability to communicate, Reuben has an awareness of and tenderness for the things of God in a way that I do not see in many people. Our God is big enough to call even people like Reuben to himself! And if God is big enough for that, who am I to stand in his way. HE is the one who creates. HE is the one who determines value. And just like he showed me in a tiny way as I held my Baby, who ended up being my Reuben Matthew, for an hour not caring who that baby was, each and every person that he has created is valuable, and has a purpose, simply because He has created them! And, oh, that we would learn to see that and to cherish that in the people around us - both the ones who seem less worthy, AND in the ones who do. We are not all that different when we stand before God.

We were, in blissful ignorance, 10 weeks pregnant with Rinnah when Reuben's epilepsy was first diagnosed, and we started down the road of learning that there was something distinctly different about the way he was learning and growing and living. (Not to mention the fact that his brain worked differently than most!) Rinnah's birth was not so difficult physically, but was by far the most challenging emotionally. I spent my (relatively short) labor with her wrestling with fears about this baby being "okay." I had made it through the pregnancy with only minor concerns, but it all came to a head during her birth. I remember Matt telling me at one point in a nice comforting way that everything was going to be okay. And I snapped at him (I can get snappy when I'm in labor! Just ask Matt) and replied, "God Doesn't Ever Promise Everything Is Going To Be Okay! [this is through gritted teeth, if I remember correctly!] He Just Promises That He Will Be With Us And That He Works Everything Out For Good For Those Who Love Him!!!" (Nothing like spouting theology at your spouse while you're in labor, huh?) ;)

Rinnah's name was chosen very deliberately. It is a Hebrew word for a "cry of joy" with a fuller meaning of "a ringing cry of entreaty or supplication, in proclamation, joy, and praise." How's that for a big name?! ;) But it was so appropriate - the cry of joy, coupled with a cry of entreaty - full of joy throwing ourselves at the feet of Jesus begging him to be sufficient for us, so in turn we can joyfully proclaim what he has done. And Rinnah Rose after my fiesty great-grandmother, who since Rinnah's birth now has had her name passed on to three great-great-grandaughters, in addition to a great-grand-daughter who had her middle name legally changed to Rose. And those of you who know Rinnah know that part of her name is appropriate, too. ;) (For the record, I was certain this baby was going to be a girl, but having been wrong three out of three times, figured that meant it must be a boy. Ha. Wrong again. I was right. She was a girl.)

A brand-new Rinnah - lots of hair! (but hard to see it under my hand)

And then there's Krassi. Krassimir Emmanuel. God is with us. Because, like I've said, if he's not, first of all, there's no way we'd have made it this far, and secondly, that's what we're relying on as we move into the future! At times like this I am painfully aware that we do not have, and never will have, photos of him when he was brand new. Or photos of him growing up. Nothing. There is a big nine-year hole in the life of this, our oldest son. The closest thing I have for Krassi is the photo that we first saw of him.

Krassimir's photo, at age 8 (years!!)

As I look at this photo now, I realize how I'm seeing him through a mother's eyes. When I first saw this photograph, it did not particularly grab me one way or the other - it was Matt who said he thought that was our boy, and said I should inquire further about him. As I look at this photo now, after knowing this boy for a year, and almost six months as my son in my house, there is an intensity to my love and concern for him. I yearn to know more about him - to know intimately what he's been through, what he was thinking, what his life was, because it's so very different from what mine has been, and I want to be able to connect with this boy - to get inside of him. I wish so much that I had photos of him - anything - that would tell me more about his life. Instead, we get to build a new life with him one day, one hour, one moment at a time. But in a similar way to what I see in Reuben - a person! A life! A living person worth taking the time to get to know, I see that in Krassimir. God has created this person, on purpose, and there is value in this person, and he ought not to be thrown away.

~~~

Reuben has from a very early age been captivated by babies. He delights in my growing belly, and is constantly patting his "BaBEE" (not all that gently, either, as control of that level isn't really his strong point!) and kissing the baby, and is all about this baby. He is so much fun to watch at our prenatal visits.

This boy has a future in the field of midwifery!

I am eagerly awaiting the arrival of this sixth child of mine with a fierceness that surprises me. Each one of the children that God has given to us has opened my eyes to see things that I likely would not have seen otherwise. Knowing that this child, too, has been created by God in exactly the way He intended fills me with anticipation. But don't ask me if I think it's going to be a boy or a girl. I completely give up on that one.


But not tonight. ;) It's pretty late now. Matt's still useless on the couch, and since it's nearing midnight, which is past even my late bedtime, I'd be better off not meeting this new little one tonight. Better to do that after a longer night's rest. ;)