Knowing I would be induced, I thought a great deal about whether my baby was going to have Down syndrome. I obsessed about it. I was afraid of what it would mean, especially immediately after birth - if he would stay in the room with me, if he would nurse, if he would be in the NICU, if it would be different than my other babies' postpartum hospital stays. I know that is short sighted. I wasn't thinking about having Down syndrome for his whole life. Just the immediate future.
I was even concerned about if I would be able to focus during labor, or if I would be thinking all the time about whether he would have it. I needn't have worried. Labor is not about meeting your baby, it's not about ending a pregnancy, it is about labor only. Nothing else.
But when he was born, and was across the room with my husband and the nurse and the doctor and they were all talking, I could hear my ob pointing out all the reasons he didn't have it, and I was fine. I didn't care. I don't know if I would have cared if he did, but I didn't care that he didn't.
They walked across the room to weigh him, and I saw him, for the first time, on the scale, and I gasped at how big and healthy and gorgeous he was. And then they brought him over and I held him, and I wept for relief, just that he was alive and here and mine. And I told him how glad I was to see him and how I've been thinking of him all day and all night and how happy I was to finally meet him. And it had nothing to do with chromosomes.
In the next couple days at the hospital, I took inventory, and wished I was the kind of mama that always did that, but I'm not. I wished I had a couple other of my newborns to compare him to, but I didn't. Is the skin on the back of his neck thicker? Is the gap between his toes big? (Never mind that Jambo's big toe gap was so big, we said he had opposing big toes.) Do his ears seem low, (do they wobble . . . ) or small, or folded over? Is he like our other people? Well, no, he is himself. And all the time I usually spend trying to figure out who he looks like was spent trying to figure out if he looked like, well, like he had Down syndrome.
I don't think he does.
In the hospital, he didn't poop very often, but not concerning, and he didn't pee that much, but I didn't worry. When we came home, I got concerned about his output, started adding an ounce of formula, then pumped mama milk after feedings, to make sure he was taking enough in. Then the inevitable nursing strike came, a 3 hour argument between mom and son (I won). Then we did the old SNS with pumped milk for another day, but that is not sustainable. All the time wondering - is this Ds? Is he one of those kids that doesn't look like he has it, and doesn't seem like he has it, but has sluggish bowels and a weak suck?
But I don't think he has it. Tomorrow we will have blood drawn and an ultrasound on his "renal" system, to make sure, to get it off the radar, and out of my mind. But I am pretty sure it will be negative.
And I have peace. I am content. I do not know what the journey was for, and I don't need to know right now. I feel a tiny bit silly for dragging everyone there, but not a lot, because of the critical moment it is in the world of Down syndrome diagnoses. I think, if our potential has raised awareness for anyone, as it obviously has for us, then it is worth it.
I am nearer my God for the journey, and that is good. I am nearer my husband, and my children, and that is also good. And if, someday, God really does place one of those treasures in my womb or my heart and in my arms, that will also be very good.
He is always good. Even when He seems not to be, when He seems silent, or absent, or cruel (have you noticed my servant Job?) still He is good. He cannot be other than He is. And He is good.
Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts
Thursday, March 03, 2011
Saturday, February 05, 2011
The Suspense . . .
First of all, let me say that cookie dough ice cream never has enough cookie dough, but that it is greatly improved with bananas and some added chocolate chips.
Secondly, lamb palak is one of the best foods in the world, but is also the ugliest.
Thirdly, I want to acknowledge that my whining here is grossly inappropriate in light of the magnitude of blessing in my life. I know I am blessed beyond measure, wealthy beyond my wildest dreams in the most priceless form. I have friends who have suffered much, lost much, grieved long and hard, and every pettiness I express here is quite ridiculous in light of true pain. So I apologize for doing this, and I hope you dear friends know that I know I should just shut up and be thankful. I'm just processing, thinking, feeling in a written form, but I do know how precious my struggle is.
I think I figured something out, talking to my sister today. I've whined about there being so many more variables this time. Normally the choices are A) I'm pregnant until I am induced for high blood pressure (after an appointment), or B) I'm pregnant until I go into labor at 41-ish weeks. So either after an appointment or in 3.5 weeks. But having the possiblity of a baby equipped with an extra chromosome means that I could really go any time - that is a new scenario for me.
So my list of unknowns are: Boy or Girl, 46 or 47, Induced or Spontaneous, Anytime in the next 3 and a half weeks. Compared to normal for me which is Boy or Girl, induced after check-up or Spontaneous at 41 wks.
Here is the thing I hadn't thought through, though. (How often do you use thought and through and though consecutively?) If our baby has Trisomy 21, there are pages of unknowns. Will he/she nurse well, breathe well, need oxygen support, room in, have heart defects, and a vast array of other issues. Vast. I have frequented www.babycenter.com, on the Down syndrome pregnancy board over the last few months, and have paid much attention to things like markers and labor with Ds and Nicu stays, and have dropped by the Down syndrome board (for moms of children with Ds) but very little. Very, very little.
There is a world of unknowns. And I have not gone there. Part of that is the old optimism I got from my mother - no need to worry about what you don't know yet. Part of it is scriptural - Jesus said not to worry, that tomorrow will take care of itself. And part of it is practical - even if we had a diagnosis, all we would know is that our baby has an extra chromosome. The rest we wont know until we meet him/her.
But part of it is cowardice. And that timid me is lurking. And when I deliver, boy or girl, sooner or later, induced or on my own, easy or hard, 46 or 47, I will have to confront that.
I have accepted the "idea" of having a baby with a chromosomal abnormality. I have not begun to consider much beyond that. Oh I did a little research about Early Intervention and homeschooling with Ds. I talked to some friends (and strangers) who had kids with that and other disabilities. But I have not emotionally gone all the way there.
How can I? And yet . . .
That is the suspense. Not that I knew anything when any of my other children were born. I didn't know what struggles they would encounter, what battles they would face, what abilities they would have, what failures they would experience. Taking it one day at a time is something I'm good at, maybe too good.
On my baby's birthday, I will have a baby. We will deal with the immediate needs. Feeding, pooping, peeing, jaundice?, milk supply, umbilical cord, circumcision maybe. Perhaps other things, pumping, nicu, testing, weight gain, temperature.
But all of that is just the starting gate. It's just the wedding. None of that is the marriage. None of that is rubber becoming acquainted with road. The happily ever after.
So even on that day, there will still be a world of unknowns. I'll just have a slightly better grasp on how very little I know. Or a slightly greater curiousity to know what I can't know.
You see where crystal balls, fortune telling, tarot cards, palm reading, horoscopes and signs, all of that has so much power with us. We want to know what is ahead.
The good news is that I am in the confidence of the One Who knows all. The bad news is He doesn't tell me everything. S'okay. I couldn't handle it if He did. The other good news is that He will give me whatever I need for whatever is ahead.
So I've settled on the following strategy to deal with the suspense: I am going to try to be ready for anytime, but plan on having a baby in March. March is a good time to have a baby. And all the other questions, I am asking my Father to prepare my heart for the gift He has for me.
Secondly, lamb palak is one of the best foods in the world, but is also the ugliest.
Thirdly, I want to acknowledge that my whining here is grossly inappropriate in light of the magnitude of blessing in my life. I know I am blessed beyond measure, wealthy beyond my wildest dreams in the most priceless form. I have friends who have suffered much, lost much, grieved long and hard, and every pettiness I express here is quite ridiculous in light of true pain. So I apologize for doing this, and I hope you dear friends know that I know I should just shut up and be thankful. I'm just processing, thinking, feeling in a written form, but I do know how precious my struggle is.
I think I figured something out, talking to my sister today. I've whined about there being so many more variables this time. Normally the choices are A) I'm pregnant until I am induced for high blood pressure (after an appointment), or B) I'm pregnant until I go into labor at 41-ish weeks. So either after an appointment or in 3.5 weeks. But having the possiblity of a baby equipped with an extra chromosome means that I could really go any time - that is a new scenario for me.
So my list of unknowns are: Boy or Girl, 46 or 47, Induced or Spontaneous, Anytime in the next 3 and a half weeks. Compared to normal for me which is Boy or Girl, induced after check-up or Spontaneous at 41 wks.
Here is the thing I hadn't thought through, though. (How often do you use thought and through and though consecutively?) If our baby has Trisomy 21, there are pages of unknowns. Will he/she nurse well, breathe well, need oxygen support, room in, have heart defects, and a vast array of other issues. Vast. I have frequented www.babycenter.com, on the Down syndrome pregnancy board over the last few months, and have paid much attention to things like markers and labor with Ds and Nicu stays, and have dropped by the Down syndrome board (for moms of children with Ds) but very little. Very, very little.
There is a world of unknowns. And I have not gone there. Part of that is the old optimism I got from my mother - no need to worry about what you don't know yet. Part of it is scriptural - Jesus said not to worry, that tomorrow will take care of itself. And part of it is practical - even if we had a diagnosis, all we would know is that our baby has an extra chromosome. The rest we wont know until we meet him/her.
But part of it is cowardice. And that timid me is lurking. And when I deliver, boy or girl, sooner or later, induced or on my own, easy or hard, 46 or 47, I will have to confront that.
I have accepted the "idea" of having a baby with a chromosomal abnormality. I have not begun to consider much beyond that. Oh I did a little research about Early Intervention and homeschooling with Ds. I talked to some friends (and strangers) who had kids with that and other disabilities. But I have not emotionally gone all the way there.
How can I? And yet . . .
That is the suspense. Not that I knew anything when any of my other children were born. I didn't know what struggles they would encounter, what battles they would face, what abilities they would have, what failures they would experience. Taking it one day at a time is something I'm good at, maybe too good.
On my baby's birthday, I will have a baby. We will deal with the immediate needs. Feeding, pooping, peeing, jaundice?, milk supply, umbilical cord, circumcision maybe. Perhaps other things, pumping, nicu, testing, weight gain, temperature.
But all of that is just the starting gate. It's just the wedding. None of that is the marriage. None of that is rubber becoming acquainted with road. The happily ever after.
So even on that day, there will still be a world of unknowns. I'll just have a slightly better grasp on how very little I know. Or a slightly greater curiousity to know what I can't know.
You see where crystal balls, fortune telling, tarot cards, palm reading, horoscopes and signs, all of that has so much power with us. We want to know what is ahead.
The good news is that I am in the confidence of the One Who knows all. The bad news is He doesn't tell me everything. S'okay. I couldn't handle it if He did. The other good news is that He will give me whatever I need for whatever is ahead.
So I've settled on the following strategy to deal with the suspense: I am going to try to be ready for anytime, but plan on having a baby in March. March is a good time to have a baby. And all the other questions, I am asking my Father to prepare my heart for the gift He has for me.
Tuesday, January 11, 2011
The End of 'Waiting It Out'
That day in October when we learned that Down syndrome might be part of our future, one of the first things I did was call an old friend who was already walking that path. And without taking a breath, she sent me some links, including info about the Down Syndrome Pregnancy group at BabyCenter.com
Little did I know there is a group for everything at BabyCenter.com. There isn't just one for people who are or might be or might not be parents of a child with T21, there are several. But the one specifically called Down Syndrome Pregnancy is pretty narrow in focus. It is for people who are carrying a child who has been confirmed to have Down syndrome (by Chorionic Villus Sampling or Amniocentesis) or who have high enough odds of it to be thinking about it but choose not to do the aforementioned testing because of the risk they carry for miscarriage. The latter group are called 'Waiting it out'.
That group will very likely disappear. I've been reading (and do not begin to understand the science of it, please) that there are tests being developed that will make it possible for every pregnant woman to know, without risk of miscarriage, beyond a reasonable shadow of doubt, whether or not the child she is carrying is carrying an extra chromosome.
Sounds wonderful, right? I wish. Remember, the current rate of termination of babies with a confirmed Ds diagnosis is something like 92%. But many (perhaps half?) babies with Downs are born without a diagnosis. No one knew they had that extra chromosome until it was "too late."
Now, isn't it marvelous, women and their, um, partners, will be able to know with certainty if the baby they are carrying is "defective" before anyone looking at them will be able to tell they are pregnant.
I hope very much that the baby I'm carrying is one of those special sweeties with an extra 21. I want to make sure every woman of childbearing age in my little corner of the universe has every opportunity to see how delightful and marvelous and perfect he or she is. I want to shine a light on this particular baby-killing scheme of the enemy of life.
Enlarge my territory Lord. I know it won't be easy. Nothing worth doing is. I know it will change us. We need to change. I know our whole world will turn upside down. I trust You with that. If You say no, I trust You with that too. All that You do is good and right. I am not afraid. But please, shine Your light, save these babies, who also bear Your image. Hide them somehow, until they can come forth and bear fruit, spiritual fruit. Save us from our fearful selves.
Amen.
Little did I know there is a group for everything at BabyCenter.com. There isn't just one for people who are or might be or might not be parents of a child with T21, there are several. But the one specifically called Down Syndrome Pregnancy is pretty narrow in focus. It is for people who are carrying a child who has been confirmed to have Down syndrome (by Chorionic Villus Sampling or Amniocentesis) or who have high enough odds of it to be thinking about it but choose not to do the aforementioned testing because of the risk they carry for miscarriage. The latter group are called 'Waiting it out'.
That group will very likely disappear. I've been reading (and do not begin to understand the science of it, please) that there are tests being developed that will make it possible for every pregnant woman to know, without risk of miscarriage, beyond a reasonable shadow of doubt, whether or not the child she is carrying is carrying an extra chromosome.
Sounds wonderful, right? I wish. Remember, the current rate of termination of babies with a confirmed Ds diagnosis is something like 92%. But many (perhaps half?) babies with Downs are born without a diagnosis. No one knew they had that extra chromosome until it was "too late."
Now, isn't it marvelous, women and their, um, partners, will be able to know with certainty if the baby they are carrying is "defective" before anyone looking at them will be able to tell they are pregnant.
I hope very much that the baby I'm carrying is one of those special sweeties with an extra 21. I want to make sure every woman of childbearing age in my little corner of the universe has every opportunity to see how delightful and marvelous and perfect he or she is. I want to shine a light on this particular baby-killing scheme of the enemy of life.
Enlarge my territory Lord. I know it won't be easy. Nothing worth doing is. I know it will change us. We need to change. I know our whole world will turn upside down. I trust You with that. If You say no, I trust You with that too. All that You do is good and right. I am not afraid. But please, shine Your light, save these babies, who also bear Your image. Hide them somehow, until they can come forth and bear fruit, spiritual fruit. Save us from our fearful selves.
Amen.
Sunday, January 09, 2011
Getting closer
I am 33 and a half weeks pregnant. Not sure if that's any kind of milestone, but it feels like getting closer to me. I was looking at one of my youngest, who is, today dressed in layers - a really loud purple, pink, orange and white paisley dress, a dark purple velvet dress up dress, pink long johns, the teal butterfly print skirt of a swimming suit, and a red shirt with royal blue sleeves and small white polka-dots (don't let yourself imagine that any of those pinks and purples compliment each other, either)and enjoying the uniqueness of her. She has pale blue eyes, dimples that rival the perfection of a cabbage patch kid, fair skin, and blond whispy hair that explodes into a puff of curls on the back of her head (reminds me of Sally from Peanuts). She is delightful.
She is still nursing, which for me is bizzaro, since none of my other children made it past 10 months nursing, and she has kept going through a week without mom (Bermuda:) and another 2 when we went to get our precious #11. But she is, and I think there is good in that - maybe helping get my body ready to deliver a little early.
I'm pretty convinced that this baby will be early because of my blood pressure (and the irresponsible way I've managed it this pregnancy, gaining much, exercising little) and potentially because of my potential to have a potentially chromosomally enhanced bundle of potentiality.
As I look at her, I find myself counting up in my head, then on my fingers, and at last breaking down and getting a piece of paper, how many of my darlings have blue eyes, hazel, chocolatey brown; how many have curls; and all the varying statistics that quantify the uniqueness of God's creation in my house, and wondering . . .
Who will this baby, this #12, this Doze (Portuguese for 12, hence the nickname Dozer) be? Will we have a boy, a girl, blue eyes, brown, green, blond, brown, curly, straight? Who is coming to meet us? Dozer is very busy these days, moving, kicking, hiccupping, rolling, exercising for his or her debut.
And I wonder, even though I think I've found some peace either way, boy or girl, 46 or 47 chromosomes, what manner of child is God giving us? Do we have the typical model, or the enhanced? I don't know. Some 50% of women who have a baby with Down syndrome had NO markers whatsoever on their ultrasounds. And I've never had any, until now. On the other hand, there are women who have all the markers I have and deliver babies who have the typical # of chromosomes. I don't know.
But I'm getting closer to knowing. I am 33 and 1/2 weeks today. 2 of my last 3 were born at 37 and 1/2 weeks. Four weeks left, maybe? I will start having non-stress tests at my next visit. Never did that before.
One thing I've done on my little journey with Down syndrome is read blogs of women who have had babies with Ds. Here are my 3 favorites. Not easy to read, but worth reading, worth knowing, worth feeling.
www.theblessingofverity.com
www.babynumber10.blogspot.com
www.kellehampton.com/2011/01/pay-it...
The third one is doing a fundraiser for the national down syndrome society (at least I assume that's what NDSS stands for). I'm not asking you to give, not sure I'm giving, but I am passing it on. Whether my baby has 46 or 47 chromosomes, I don't think God has called me to be an advocate in the way some moms are. But I do have eyes that are opener than they were, and I think it is worth giving you the chance to have your eyes be opener too. (I know that's not proper grammar, just being funny)
She is still nursing, which for me is bizzaro, since none of my other children made it past 10 months nursing, and she has kept going through a week without mom (Bermuda:) and another 2 when we went to get our precious #11. But she is, and I think there is good in that - maybe helping get my body ready to deliver a little early.
I'm pretty convinced that this baby will be early because of my blood pressure (and the irresponsible way I've managed it this pregnancy, gaining much, exercising little) and potentially because of my potential to have a potentially chromosomally enhanced bundle of potentiality.
As I look at her, I find myself counting up in my head, then on my fingers, and at last breaking down and getting a piece of paper, how many of my darlings have blue eyes, hazel, chocolatey brown; how many have curls; and all the varying statistics that quantify the uniqueness of God's creation in my house, and wondering . . .
Who will this baby, this #12, this Doze (Portuguese for 12, hence the nickname Dozer) be? Will we have a boy, a girl, blue eyes, brown, green, blond, brown, curly, straight? Who is coming to meet us? Dozer is very busy these days, moving, kicking, hiccupping, rolling, exercising for his or her debut.
And I wonder, even though I think I've found some peace either way, boy or girl, 46 or 47 chromosomes, what manner of child is God giving us? Do we have the typical model, or the enhanced? I don't know. Some 50% of women who have a baby with Down syndrome had NO markers whatsoever on their ultrasounds. And I've never had any, until now. On the other hand, there are women who have all the markers I have and deliver babies who have the typical # of chromosomes. I don't know.
But I'm getting closer to knowing. I am 33 and 1/2 weeks today. 2 of my last 3 were born at 37 and 1/2 weeks. Four weeks left, maybe? I will start having non-stress tests at my next visit. Never did that before.
One thing I've done on my little journey with Down syndrome is read blogs of women who have had babies with Ds. Here are my 3 favorites. Not easy to read, but worth reading, worth knowing, worth feeling.
www.theblessingofverity.com
www.babynumber10.blogspot.com
www.kellehampton.com/2011/01/pay-it...
The third one is doing a fundraiser for the national down syndrome society (at least I assume that's what NDSS stands for). I'm not asking you to give, not sure I'm giving, but I am passing it on. Whether my baby has 46 or 47 chromosomes, I don't think God has called me to be an advocate in the way some moms are. But I do have eyes that are opener than they were, and I think it is worth giving you the chance to have your eyes be opener too. (I know that's not proper grammar, just being funny)
Saturday, January 08, 2011
"better"
(written November 23, 2010)
i sent out a text last night to 3 batches of people because i have made myself vulnerable to so many people my phone has to break it into 3 groups to send a text. anyway, this is what the text said: after ultrasound today our odds for down syndrome were lower, baby looks healthy, trusting God for whatever He blesses us with. i don't think i meant to say our odds are all better. i didn't mean we had no risk. i just meant we went from 1 in 2 to something like 1 in 5 at the worst.
the doctor appointment itself was confusing to me. when asked about the nasal bone, both the sonographer and the perinatologist said it is too late for that to mean anything, but last time the peri based her 1:2 odds on its absence. this doc said because the baby is growing and is a good size and that he wouldn't worry.
so this is what i think: i think the doc spoke as from the Lord to my heart. he basically said, don't worry about this. you cannot see the future. your baby may have downs. or you could have a child with autism, or a cancer diagnosis, or lose a child in a car wreck. you can't know the future. right now, you need to focus on what you have, focus on the baby you have in your arms, on your family. whatever God gives you, you will do great with.
but then i have the responses of the whole world who received my text. they all seem to have taken it as a "never mind, we don't have downs." and i don't know if we do or not. i will still be seen monthly. i will still be monitored weekly at the end if the kidneys don't normalize. i think if we had had a different perinatologist we might have had a different interpretation. we Just Don't Know.
and here's the tough little thing - i have come to see the baby in my belly as a baby with an extra chromosome. that's who i think is in there. that is who i'm looking forward to meeting, because that is who i thought God was making. all the people praising God for not giving me that T21 baby are rejecting the baby i want. they are very excited for me, but i feel like i've lost someone.
i'm also having to let go of my pride, and acknowledge that maybe God isn't giving me a baby with Ds because i can't be that good of a mom, that i wouldn't be able to make sure he got everything he needed.
i feel like a fool, having told so many loved ones, sometimes in tears, and now it looks like there wasn't ever that big a risk, and why did i even go there anyway.
but mostly i'm disappointed, because i have loved and potentially lost an imaginary little baby with an extra chromosome, and at the moment of finding out he was only in my heart and never in my uterus (maybe), i also learned that the rest of the world is seeming glad, thrilled that he went away - nobody wanted him but me.
i do not want to be disappointed when my baby comes. for this reason, i will set my heart to receive what to me is the less desirable option - i will anticipate a baby like all the others. and if He ever does in fact trust me with a little 'tongue-er' (nick's name for Ds), i will be the one dancing for joy that God trusted me enough to give me such a reward.
i sent out a text last night to 3 batches of people because i have made myself vulnerable to so many people my phone has to break it into 3 groups to send a text. anyway, this is what the text said: after ultrasound today our odds for down syndrome were lower, baby looks healthy, trusting God for whatever He blesses us with. i don't think i meant to say our odds are all better. i didn't mean we had no risk. i just meant we went from 1 in 2 to something like 1 in 5 at the worst.
the doctor appointment itself was confusing to me. when asked about the nasal bone, both the sonographer and the perinatologist said it is too late for that to mean anything, but last time the peri based her 1:2 odds on its absence. this doc said because the baby is growing and is a good size and that he wouldn't worry.
so this is what i think: i think the doc spoke as from the Lord to my heart. he basically said, don't worry about this. you cannot see the future. your baby may have downs. or you could have a child with autism, or a cancer diagnosis, or lose a child in a car wreck. you can't know the future. right now, you need to focus on what you have, focus on the baby you have in your arms, on your family. whatever God gives you, you will do great with.
but then i have the responses of the whole world who received my text. they all seem to have taken it as a "never mind, we don't have downs." and i don't know if we do or not. i will still be seen monthly. i will still be monitored weekly at the end if the kidneys don't normalize. i think if we had had a different perinatologist we might have had a different interpretation. we Just Don't Know.
and here's the tough little thing - i have come to see the baby in my belly as a baby with an extra chromosome. that's who i think is in there. that is who i'm looking forward to meeting, because that is who i thought God was making. all the people praising God for not giving me that T21 baby are rejecting the baby i want. they are very excited for me, but i feel like i've lost someone.
i'm also having to let go of my pride, and acknowledge that maybe God isn't giving me a baby with Ds because i can't be that good of a mom, that i wouldn't be able to make sure he got everything he needed.
i feel like a fool, having told so many loved ones, sometimes in tears, and now it looks like there wasn't ever that big a risk, and why did i even go there anyway.
but mostly i'm disappointed, because i have loved and potentially lost an imaginary little baby with an extra chromosome, and at the moment of finding out he was only in my heart and never in my uterus (maybe), i also learned that the rest of the world is seeming glad, thrilled that he went away - nobody wanted him but me.
i do not want to be disappointed when my baby comes. for this reason, i will set my heart to receive what to me is the less desirable option - i will anticipate a baby like all the others. and if He ever does in fact trust me with a little 'tongue-er' (nick's name for Ds), i will be the one dancing for joy that God trusted me enough to give me such a reward.
Monday, January 03, 2011
what if my baby doesn't have down syndrome?
11/24/2010
i know that's the wrong question for most people. but our ultrasound report was either better today than last time, or our perinatologist was just a more positive guy, and i'm trying to figure out how to position my heart.
i think God has uniquely prepared us for a baby with down syndrome, i've worked through it, i'm okay, even excited about having a baby with an extra chromosome.
what i'm not ready for is a change of plans. i'm not bouncing well. if we have a typical baby, here are the (potentially ridiculous or petty) things i'm struggling with:
1. did we really hear God?
2. does this mean God doesn't trust us with a baby with Ds?
3. have i wasted all this time reading about/talking about/preparing for Ds?
4. am i a fool for having talked to my loved ones and taken everyone on this little emotional journey?
so what is being required of me (it feels like) i'm going to wait another 14ish weeks trying to be ready for either a boy with 47 chromosomes, or a girl with 47, or a boy with 46 or a girl with 46, trying hard not to have much of a preference so that when my baby is born, regardless of gender or chromosomes, i am able to fully welcome him or her without any shadow of disappointment. barring an amnio or whatever, i will just not know, and need to let go of my need to know.
but here is the real story. God is making a baby in my tummy. And He is doing it exactly right. if He does not give me a Ds baby, then it is because His plan for us and for this baby was 46 chromosomes. and that is good. whatever He wanted to teach us through this process, we will have learned. we will be better friends to anyone welcoming a baby with Ds into their lives. we will be more understanding of persons facing mental and physical difficulties.
that's all i know, all i can go on. God does not make mistakes. He is doing whatever He is doing perfectly. i can trust Him completely to give me grace each day for whatever that day will bring. including down syndrome. including typical. including not knowing.
i know that's the wrong question for most people. but our ultrasound report was either better today than last time, or our perinatologist was just a more positive guy, and i'm trying to figure out how to position my heart.
i think God has uniquely prepared us for a baby with down syndrome, i've worked through it, i'm okay, even excited about having a baby with an extra chromosome.
what i'm not ready for is a change of plans. i'm not bouncing well. if we have a typical baby, here are the (potentially ridiculous or petty) things i'm struggling with:
1. did we really hear God?
2. does this mean God doesn't trust us with a baby with Ds?
3. have i wasted all this time reading about/talking about/preparing for Ds?
4. am i a fool for having talked to my loved ones and taken everyone on this little emotional journey?
so what is being required of me (it feels like) i'm going to wait another 14ish weeks trying to be ready for either a boy with 47 chromosomes, or a girl with 47, or a boy with 46 or a girl with 46, trying hard not to have much of a preference so that when my baby is born, regardless of gender or chromosomes, i am able to fully welcome him or her without any shadow of disappointment. barring an amnio or whatever, i will just not know, and need to let go of my need to know.
but here is the real story. God is making a baby in my tummy. And He is doing it exactly right. if He does not give me a Ds baby, then it is because His plan for us and for this baby was 46 chromosomes. and that is good. whatever He wanted to teach us through this process, we will have learned. we will be better friends to anyone welcoming a baby with Ds into their lives. we will be more understanding of persons facing mental and physical difficulties.
that's all i know, all i can go on. God does not make mistakes. He is doing whatever He is doing perfectly. i can trust Him completely to give me grace each day for whatever that day will bring. including down syndrome. including typical. including not knowing.
Sunday, January 02, 2011
Straddling the universe with hope
(11/15/2010)
It is weird to me that I am writing all these posts in secret, not to publish until everybody knows that needs to know, until we are ready, until we know a little more.
And today I know less than I did yesterday. My ob called this evening. He had finally read the 'report' from the perinatologist. And it was just as confusing as our visit was then. On the one hand, only one tiny marker, big kidneys, big deal. On the other hand, 50/50 odds, talk to your pediatrician, want to see you back because "these babies sometimes experience fetal demise". Until my husband asks the big question - knowing what you know, what odds?
What makes her think so strongly? In the report it just said, "nasal bone not convincingly displayed," or something like that. "I hope I'm wrong," she said.
Obviously, everyone hopes she's wrong. My ob hopes she's wrong. My pastor hopes she's wrong. Friends, relatives, husband, of course we hope she's wrong.
But I don't. I am trying to be okay with whichever baby God has made. But it is hard to adjust to both possibilities. I have experienced the need to be ready for a boy or a girl. I have prayed, "God, I need You to help me be ready if I'm having . . . " whatever I wasn't hoping for. And He has.
But this is different. In order to be ready for a baby with Down syndrome, I have to believe that if that is what God gives us, that is the very best thing that could happen. In order to be in a position where I will be relieved to have a baby with 46 chromosomes I have to focus on, believe that a 47 is less desirable than a 46.
It is hard not to have a preference, hard not to want one thing more than another. And today, my preference is what I think God has been saying. I think God is saying He's making a baby for us with 47 chromosomes. So that's what I want.
When we were answering adoption questions and one of the questions was Down syndrome, we said no. It's not that that's what I've always wanted, not that I've been praying for that, not that I would have gone out of my way to pursue it (although I'm learning that once you are the parent of a child with ds, you might just feel that way). The reason that is what I want is because at this time, that is what I think God wants.
Could I be wrong? Sure, I'm wrong all the time. Overthinking, overreacting, letting my imagination prepare me for the worst case, just in case, being safe rather than sorry - these are all ways I roll. I'm a thinker and a dreamer. So my prayer is that the Lord would prepare my heart for whatever He is doing, boy, girl, 46, 47, whatever.
So, don't worry, Dr. Herrmann, about getting my hopes up. My hopes are high. I'm hoping not for a particular # of chromosomes or a certain gender, but for God's Name to be glorified, for His Kingdom to expand, in my heart, in my house, on my block, in my city, here, wherever He takes us, I hope He is exalted. God is making a baby in my belly. He Who began a good work in me will be faithful to complete it.
It is weird to me that I am writing all these posts in secret, not to publish until everybody knows that needs to know, until we are ready, until we know a little more.
And today I know less than I did yesterday. My ob called this evening. He had finally read the 'report' from the perinatologist. And it was just as confusing as our visit was then. On the one hand, only one tiny marker, big kidneys, big deal. On the other hand, 50/50 odds, talk to your pediatrician, want to see you back because "these babies sometimes experience fetal demise". Until my husband asks the big question - knowing what you know, what odds?
What makes her think so strongly? In the report it just said, "nasal bone not convincingly displayed," or something like that. "I hope I'm wrong," she said.
Obviously, everyone hopes she's wrong. My ob hopes she's wrong. My pastor hopes she's wrong. Friends, relatives, husband, of course we hope she's wrong.
But I don't. I am trying to be okay with whichever baby God has made. But it is hard to adjust to both possibilities. I have experienced the need to be ready for a boy or a girl. I have prayed, "God, I need You to help me be ready if I'm having . . . " whatever I wasn't hoping for. And He has.
But this is different. In order to be ready for a baby with Down syndrome, I have to believe that if that is what God gives us, that is the very best thing that could happen. In order to be in a position where I will be relieved to have a baby with 46 chromosomes I have to focus on, believe that a 47 is less desirable than a 46.
It is hard not to have a preference, hard not to want one thing more than another. And today, my preference is what I think God has been saying. I think God is saying He's making a baby for us with 47 chromosomes. So that's what I want.
When we were answering adoption questions and one of the questions was Down syndrome, we said no. It's not that that's what I've always wanted, not that I've been praying for that, not that I would have gone out of my way to pursue it (although I'm learning that once you are the parent of a child with ds, you might just feel that way). The reason that is what I want is because at this time, that is what I think God wants.
Could I be wrong? Sure, I'm wrong all the time. Overthinking, overreacting, letting my imagination prepare me for the worst case, just in case, being safe rather than sorry - these are all ways I roll. I'm a thinker and a dreamer. So my prayer is that the Lord would prepare my heart for whatever He is doing, boy, girl, 46, 47, whatever.
So, don't worry, Dr. Herrmann, about getting my hopes up. My hopes are high. I'm hoping not for a particular # of chromosomes or a certain gender, but for God's Name to be glorified, for His Kingdom to expand, in my heart, in my house, on my block, in my city, here, wherever He takes us, I hope He is exalted. God is making a baby in my belly. He Who began a good work in me will be faithful to complete it.
Saturday, January 01, 2011
A year ago today
A year ago today I was different than I am now.
I thought adoption was something I could not do, or would at least have to wait until my children were older.
I thought perhaps 10 children was all I would have.
I did not know how powerfully God could speak through my children.
I was unaware of the blessing that Down syndrome can be.
I did not know what amazing young men and women my older children would be today.
I would not have believed that today I would be holding a beautiful baby girl with long black eyelashes, warm brown skin and curly black hair, or that she would have such an amazing smile and would laugh when she sees me.
I did not know I'd spend 12 life changing days 12 hours away getting to know other people in another world, or how much I'd miss my people back home to the point that my heart would almost break.
I didn't know that my older children would blossom in the areas of music and prayer as they participate in their worship training set.
I didn't know the next generation of children in my life would grow up so much and take on leadership qualities of their own.
I have learned much about baby formula, premature baby, nicu time, nursing, adoption, empathy and loving than I ever thought there was to know.
I have developed some marvelous new friendships in the last year, and have also deepened friendships that I've had for years.
In the last year I have learned some about heartache and betrayal, some about depression and weakness, some about failure and trudging.
I am also more convinced than I was a year ago today that God is gracious, holy, mighty, kind, and ever present in my heart.
I thought adoption was something I could not do, or would at least have to wait until my children were older.
I thought perhaps 10 children was all I would have.
I did not know how powerfully God could speak through my children.
I was unaware of the blessing that Down syndrome can be.
I did not know what amazing young men and women my older children would be today.
I would not have believed that today I would be holding a beautiful baby girl with long black eyelashes, warm brown skin and curly black hair, or that she would have such an amazing smile and would laugh when she sees me.
I did not know I'd spend 12 life changing days 12 hours away getting to know other people in another world, or how much I'd miss my people back home to the point that my heart would almost break.
I didn't know that my older children would blossom in the areas of music and prayer as they participate in their worship training set.
I didn't know the next generation of children in my life would grow up so much and take on leadership qualities of their own.
I have learned much about baby formula, premature baby, nicu time, nursing, adoption, empathy and loving than I ever thought there was to know.
I have developed some marvelous new friendships in the last year, and have also deepened friendships that I've had for years.
In the last year I have learned some about heartache and betrayal, some about depression and weakness, some about failure and trudging.
I am also more convinced than I was a year ago today that God is gracious, holy, mighty, kind, and ever present in my heart.
Rejection
(Originally written 11/20/2010)
The response of the world to a babe with down syndrome, as I am learning, is to reject it. They abort it, if they know about it, in 90+% of the cases. That means for every baby you know of with Ds, you should know another several, because for every baby born (whose parents knew ahead of time of the diagnosis) 9 or so were murdered in utero.
Not only that, but I read last night that (anecdotally - no stats on this one) that sometimes pediatric cardiologists offer as an option to new parents of babies born with the heart defect that some 25% of babies with Ds have, to forego the surgery needed to fix it, even though the success rate for the surgery is 95%, and even though most babies who need the surgery and don't get it die within a year, and most don't live very much longer. And some parents choose this.
They reject it. The world REJECTS babies with down syndrome as a lesser human, less desirable. They call it bad.
Obviously, in the body of Christ, we don't do that. We don't abort babies. But sometimes, some responses to my probable Ds pregnancy feel like a rejection. It feels like those blank stares, those promises to pray for a normal baby, feels like they feel the same way the world does about a baby with downs. Like they want to reject it too. And because of how I feel about that baby already, sometimes it feels like people are rejecting that which I perceive as God's perfect plan for me, rejecting what may be a difficult but fruitful road ahead of me, rejecting my LESS DESIRABLE blessing.
And if we lived in a Darwinian world, Godless, where things just happen, sperm meets egg, practicing "unprotected" albeit marital sex, I might be inclined to agree with someone who feels that way. I'm in over my head. I have so many children, I ought to live in a shoe. 10 kids is hard, adopting is hard, adopting trans-racially is harder, adopting when you are pregnant is ridiculous, and having a baby when I'm 39 and therefore at greater risk for chromosomal anomaly is unwise. If we get stuck with a hard kid, oh well, but we'd be silly to want it.
But such is not our outlook. God sat as King at the flood. He sits as King forever. He is great and mighty. He knits babies together before we ever know it is happening.
My brother and his family have worked in Kenya as missionaries and have a relationship with a woman named Betty there who has HIV. She wasn't born with HIV. I'm pretty sure it wasn't because of a blood transfusion. I don't know if she knew how she got it, but she does have it. The crazy thing is, she calls it a talent (as in the parable of the talents). Her HIV is a talent she uses to lead people to Christ. It's the craziest thing.
I have a dear friend who has a daughter with spina bifida. She sees it as the perfect way God designed her daughter. God made Selah so that she cannot use her legs or go to the bathroom in the typical way. She has had many surgeries and complications. But God wasn't sleeping or on vacation or out to lunch when Selah's spine was being formed. In that hidden secret place of the womb that we can't really touch or understand or influence, except by prayer or negatively with drugs, God knows exactly what He is doing. God works all things together for our good.
My friends want what's best for me. They do not want to see their overwhelmed friend be more overwhelmed. They would not wish difficulty for me. In their compassion for me, they would prefer to see us have a typical baby. I understand that and appreciate it. I would not have wished HIV on Betty or spina bifida on my friend's daughter. But I see the goodness of God that has happened through these hard things.
A mother of 10 whose youngest has a spare chromosome said something like this: "God could have made us so that any chromosomal anomaly was fatal. He didn't, and I think He had a reason for it. I think He wanted those people here for a reason, so that we can learn from them." I agree with her. And if He has chosen us to have such a child, such a privilege, such an honor - I will just be ready to see His faithfulness EXPLODE!
The response of the world to a babe with down syndrome, as I am learning, is to reject it. They abort it, if they know about it, in 90+% of the cases. That means for every baby you know of with Ds, you should know another several, because for every baby born (whose parents knew ahead of time of the diagnosis) 9 or so were murdered in utero.
Not only that, but I read last night that (anecdotally - no stats on this one) that sometimes pediatric cardiologists offer as an option to new parents of babies born with the heart defect that some 25% of babies with Ds have, to forego the surgery needed to fix it, even though the success rate for the surgery is 95%, and even though most babies who need the surgery and don't get it die within a year, and most don't live very much longer. And some parents choose this.
They reject it. The world REJECTS babies with down syndrome as a lesser human, less desirable. They call it bad.
Obviously, in the body of Christ, we don't do that. We don't abort babies. But sometimes, some responses to my probable Ds pregnancy feel like a rejection. It feels like those blank stares, those promises to pray for a normal baby, feels like they feel the same way the world does about a baby with downs. Like they want to reject it too. And because of how I feel about that baby already, sometimes it feels like people are rejecting that which I perceive as God's perfect plan for me, rejecting what may be a difficult but fruitful road ahead of me, rejecting my LESS DESIRABLE blessing.
And if we lived in a Darwinian world, Godless, where things just happen, sperm meets egg, practicing "unprotected" albeit marital sex, I might be inclined to agree with someone who feels that way. I'm in over my head. I have so many children, I ought to live in a shoe. 10 kids is hard, adopting is hard, adopting trans-racially is harder, adopting when you are pregnant is ridiculous, and having a baby when I'm 39 and therefore at greater risk for chromosomal anomaly is unwise. If we get stuck with a hard kid, oh well, but we'd be silly to want it.
But such is not our outlook. God sat as King at the flood. He sits as King forever. He is great and mighty. He knits babies together before we ever know it is happening.
My brother and his family have worked in Kenya as missionaries and have a relationship with a woman named Betty there who has HIV. She wasn't born with HIV. I'm pretty sure it wasn't because of a blood transfusion. I don't know if she knew how she got it, but she does have it. The crazy thing is, she calls it a talent (as in the parable of the talents). Her HIV is a talent she uses to lead people to Christ. It's the craziest thing.
I have a dear friend who has a daughter with spina bifida. She sees it as the perfect way God designed her daughter. God made Selah so that she cannot use her legs or go to the bathroom in the typical way. She has had many surgeries and complications. But God wasn't sleeping or on vacation or out to lunch when Selah's spine was being formed. In that hidden secret place of the womb that we can't really touch or understand or influence, except by prayer or negatively with drugs, God knows exactly what He is doing. God works all things together for our good.
My friends want what's best for me. They do not want to see their overwhelmed friend be more overwhelmed. They would not wish difficulty for me. In their compassion for me, they would prefer to see us have a typical baby. I understand that and appreciate it. I would not have wished HIV on Betty or spina bifida on my friend's daughter. But I see the goodness of God that has happened through these hard things.
A mother of 10 whose youngest has a spare chromosome said something like this: "God could have made us so that any chromosomal anomaly was fatal. He didn't, and I think He had a reason for it. I think He wanted those people here for a reason, so that we can learn from them." I agree with her. And if He has chosen us to have such a child, such a privilege, such an honor - I will just be ready to see His faithfulness EXPLODE!
Higher than my ways
(Originally written 11/6/2010)
So we found out we have some "markers" for Down's Syndrome. Well, we also think we have some things we call 'spiritual' markers. And one of the big ones for me is the unique ways God has prepared our hearts to be parents of a little guy with an extra chromosome, using our adoption process. I'm not saying we adopted our baby girl just so we could be ready for our downsy guy (don't know its a guy, don't know if its downs, just think so). I think we adopted her so we could be her parents. But God is a great multitasker!
1. Through our adoption process, we had several long heart to heart conversations about what kind of baby we would be willing to take. Drug impacted, fetal alcohol syndrome, physical disabilities, potential to never live independently . . . we talked at length about all kinds of things we had never considered before. Multiple times, we said yes to God about babies who had the potential to be, well, hard. A scripture God gave us very early on by means of confirmation was Matthew 18:5, "whoever receives one of these little children in My Name, receiveth Me." Because we had this preparation, when we were told about the markers indicating the possibility of Down syndrome, we were not really thrown, especially compared to how we might have reacted a year ago to the same news.
2. When we adopted our girl, she spent a week in the nicu. With any of my other babies, I did not handle well any time I had a baby who was not with me, whether in a warming bed, under a bili light, whatever - I would really not take it well. But now, I think maybe I can handle a baby who needs special care. I'm ready, in a way I would not have been.
3. Speaking of NICU, I had previously spent only hours visiting my nieces in NICUs. I was not comfortable in them and pretty overwhelmed. Now, if our little guy needs extra care, which more than half probably do, I can take it.
4. Furthermore, when my friend recently had a baby in OUR nicu, I found out that my hospital has a GREAT NICU!! Fabulous. We will be ok.
5. Nursing. Up till now, my struggles with nursing have been limited to a couple early arriving girls who didn't want to nurse because they were sleepy and jaundiced. But we have learned a whole lot about feeding challenges and bottles and supplemental nursing systems, etc, and I feel ready to handle a challenge in that department as well.
I'm not saying I know all there is to know. I'm saying my heart is significantly more ready than it would have been a year ago.
I have been wondering about God's timing in this whole season. Why would He give me 2 babies 5 months apart? I may have an answer. Talking to a dear friend with an adult son with downs, she said that not only will a child with Ds do well in our house because of the wealth of siblings, but he will be especially benefited by having a sibling so very near to push him on! Who knew? Well, God knew. Isn't He amazing?
My husband has been hearing from God. I know it's God, because his whole face changes when he talks about it. God is saying things like, "I do not make mistakes. This is not an accident. I am trusting you. This is a reward."
I also feel God breathing strength in me, talking about enlarging our territory.
Little things. #3 daughter has been saying for months "it will be well with you, with the baby in your tummy." Finding out that a dear friend can be our care coordinator for First Steps, and getting information and comfort from her about that whole thing (which I had feared). Meeting a mom of a little guy at soccer the week after we found out. Getting to see my friend's newborn 2 days after our 1st ultrasound. Telling my eldest and having her say, yeah, mom, I thought so. She went back and read her prayer journal from when we found out we were expecting, sure enough, God was speaking to her then. A camp friend I had lost touch with for nearly 20 years and re-found last Christmas (thank you facebook) whose sixth child has downs.
We feel fairly sure this is where God is taking us, and that it is GOOD. We are not afraid. Does that mean it will surely happen? No, of course not. But it means that if it does, God has uniquely prepared us to receive this kind of blessing, and for that I am so very grateful.
So we found out we have some "markers" for Down's Syndrome. Well, we also think we have some things we call 'spiritual' markers. And one of the big ones for me is the unique ways God has prepared our hearts to be parents of a little guy with an extra chromosome, using our adoption process. I'm not saying we adopted our baby girl just so we could be ready for our downsy guy (don't know its a guy, don't know if its downs, just think so). I think we adopted her so we could be her parents. But God is a great multitasker!
1. Through our adoption process, we had several long heart to heart conversations about what kind of baby we would be willing to take. Drug impacted, fetal alcohol syndrome, physical disabilities, potential to never live independently . . . we talked at length about all kinds of things we had never considered before. Multiple times, we said yes to God about babies who had the potential to be, well, hard. A scripture God gave us very early on by means of confirmation was Matthew 18:5, "whoever receives one of these little children in My Name, receiveth Me." Because we had this preparation, when we were told about the markers indicating the possibility of Down syndrome, we were not really thrown, especially compared to how we might have reacted a year ago to the same news.
2. When we adopted our girl, she spent a week in the nicu. With any of my other babies, I did not handle well any time I had a baby who was not with me, whether in a warming bed, under a bili light, whatever - I would really not take it well. But now, I think maybe I can handle a baby who needs special care. I'm ready, in a way I would not have been.
3. Speaking of NICU, I had previously spent only hours visiting my nieces in NICUs. I was not comfortable in them and pretty overwhelmed. Now, if our little guy needs extra care, which more than half probably do, I can take it.
4. Furthermore, when my friend recently had a baby in OUR nicu, I found out that my hospital has a GREAT NICU!! Fabulous. We will be ok.
5. Nursing. Up till now, my struggles with nursing have been limited to a couple early arriving girls who didn't want to nurse because they were sleepy and jaundiced. But we have learned a whole lot about feeding challenges and bottles and supplemental nursing systems, etc, and I feel ready to handle a challenge in that department as well.
I'm not saying I know all there is to know. I'm saying my heart is significantly more ready than it would have been a year ago.
I have been wondering about God's timing in this whole season. Why would He give me 2 babies 5 months apart? I may have an answer. Talking to a dear friend with an adult son with downs, she said that not only will a child with Ds do well in our house because of the wealth of siblings, but he will be especially benefited by having a sibling so very near to push him on! Who knew? Well, God knew. Isn't He amazing?
My husband has been hearing from God. I know it's God, because his whole face changes when he talks about it. God is saying things like, "I do not make mistakes. This is not an accident. I am trusting you. This is a reward."
I also feel God breathing strength in me, talking about enlarging our territory.
Little things. #3 daughter has been saying for months "it will be well with you, with the baby in your tummy." Finding out that a dear friend can be our care coordinator for First Steps, and getting information and comfort from her about that whole thing (which I had feared). Meeting a mom of a little guy at soccer the week after we found out. Getting to see my friend's newborn 2 days after our 1st ultrasound. Telling my eldest and having her say, yeah, mom, I thought so. She went back and read her prayer journal from when we found out we were expecting, sure enough, God was speaking to her then. A camp friend I had lost touch with for nearly 20 years and re-found last Christmas (thank you facebook) whose sixth child has downs.
We feel fairly sure this is where God is taking us, and that it is GOOD. We are not afraid. Does that mean it will surely happen? No, of course not. But it means that if it does, God has uniquely prepared us to receive this kind of blessing, and for that I am so very grateful.
Thursday, December 23, 2010
Beauty
It's funny that someone said that beauty is only skin deep. What a bunch of malarky. Beauty exists on so many levels. I have a book that I'm not smart enough to read called 'The Evidential Power of Beauty' that basically makes the case that the beauty that exists everywhere in the universe is evidence of a Creator.
Not my point.
I'm typing this while holding my newborn daughter. Her lineage is a combination of African American, Portuguese and something else. She is beautiful. Her every feature is perfect. Her long fingers, her eyelashes, her amazing eyes, her silky black hair - absolutely breathtaking.
We said yes to her without having any idea how stunning she would be. But her beauty was a given because she was designed and crafted by the same Guy who made masterpieces such as Niagara Falls, the Redwood Forest, Lake Michigan and the Rocky Mountains. He made the stars also. Flowers, some too small to readily see. If God makes a teeny tiny flower so small that no one ever notices it, is it still beautiful? Oh yeah.
Last night (10/20/2010) I had the honor and privilege of holding the tiny fingers of a newborn baby who happens to have been given 47 chromosomes in each of his cells, a condition we call Down's Syndrome. He was beautiful. He was very obviously crafted by God Himself, knit together perfectly from the moment he was conceived.
And his beauty is not only as deep as his skin. It goes all the way to his heart, to his spirit. It is hard for us to comprehend why God does what He does the way He does it. This boy was not a planned intended desired pregnancy. God invaded the space of a couple not wanting children anyway, and made a child that something like 92% of couples who find out they're carrying one will choose to end his life.
What is beautiful? We live in such a skewed world when it comes to beauty. We paint our faces and color our hair and cloth ourselves in such a way as to feel beautiful. But beauty is active. Beauty is living. Beauty is way more than skin deep. It goes all the way down to, well, to the uterus.
Not my point.
I'm typing this while holding my newborn daughter. Her lineage is a combination of African American, Portuguese and something else. She is beautiful. Her every feature is perfect. Her long fingers, her eyelashes, her amazing eyes, her silky black hair - absolutely breathtaking.
We said yes to her without having any idea how stunning she would be. But her beauty was a given because she was designed and crafted by the same Guy who made masterpieces such as Niagara Falls, the Redwood Forest, Lake Michigan and the Rocky Mountains. He made the stars also. Flowers, some too small to readily see. If God makes a teeny tiny flower so small that no one ever notices it, is it still beautiful? Oh yeah.
Last night (10/20/2010) I had the honor and privilege of holding the tiny fingers of a newborn baby who happens to have been given 47 chromosomes in each of his cells, a condition we call Down's Syndrome. He was beautiful. He was very obviously crafted by God Himself, knit together perfectly from the moment he was conceived.
And his beauty is not only as deep as his skin. It goes all the way to his heart, to his spirit. It is hard for us to comprehend why God does what He does the way He does it. This boy was not a planned intended desired pregnancy. God invaded the space of a couple not wanting children anyway, and made a child that something like 92% of couples who find out they're carrying one will choose to end his life.
What is beautiful? We live in such a skewed world when it comes to beauty. We paint our faces and color our hair and cloth ourselves in such a way as to feel beautiful. But beauty is active. Beauty is living. Beauty is way more than skin deep. It goes all the way down to, well, to the uterus.
Come uh come uh down dooby doo down down . . .
Breaking up is hard to do. For 39 year old chromosomes, that is. Specifically the 21st chromosome.
This post (originally written in late October, 2010) is part of my private Down's Syndrome pregnancy blog. Private until we're ready to tell the world that we are preparing for the possibility of our baby, due in February, arriving with a spare chromosome.
Prior to a few weeks ago, to be really honest, I've mostly ignored this pregnancy. For one thing, I've been very focused on the baby at hand, the one we adopted on September 30th of this year. Also, for the 8th or 9th time out of eleven pregnancies, my placenta is right out in front, so I don't feel the baby move until he/she is bigger than that placenta, which happens around 22 weeks. So he/she hasn't really been on my mind as much as would normally be.
Until recently. A few weeks ago, on Monday, October 18th, we had our "big", routine ultrasound at my ob's office. It was fairly quiet, but nothing alarming. The ultrasonagrapher couldn't get a good view of the face, heart, and, when we asked if everything she could see was looking ok, said the kidneys were enlarged.
Normally, my husband leaves at that point. I go to the waiting room and get called back when the doc is ready to see me. This time (for some unknown reason that I call 'God') the nurse said, "Oh, you can come on back, we have a room open," and even though it meant being late for a meeting at work, he stayed.
Our doctor, with whom we go back 13 years and 9 kids, explained that our baby not only had enlarged kidneys, but also had a femur and humerus that were on the short side, which he said meant we had 1 hard (the femur) and 2 soft markers for Down's syndrome. We could wait a month and have another look, maybe the bones would grow, kidneys shrink, or we could do some more testing, Level 2 u/s, amnio, it was up to us.
Initially, we said we'd wait. It didn't seem to matter. But then the research set in, I made some phone calls, and there were questions, and, well, suspense. We decided there was nothing to lose by going ahead with the Level 2 ultrasound.
Last Thursday, 10/28, going into the level 2 appointment we understood our odds to be 1:11, but that was us working it out over the internet. During the appointment we learned that our femur and humerus were within the range of normal, and our baby's kidneys were still enlarged. She talked to us about needing to have monthly ultrasounds, talking to our pediatrician and letting him know we had a strong possibility of Down's, and said that the baby looked very healthy, with no big organ problems.
Then Brian asked his big question, "Knowing what we know now, what are our odds?" She said, "You're not going to like this, 50/50." She went on to tell us that the nasal bone was not convincingly present, and that she felt they had had a pretty good look.
Later our pediatrician told me that 99% of Caucasian babies without a nasal bone have Downs syndrome.
I have moments of being teary eyed, but the truth of the matter is that God has been making a baby in my tummy for 5 months, and He is either using 46 chromosome cells or 47's. Whichever He is using, I'm going to call what it "good".
Initially, I was overwhelmed at another battle. At dealing with what people will think. We are already on the lunatic fringe. We have given birth to 10 kids, just adopted another of a different race, while pregnant, and now this. Are You joking God? The name we have chosen for a boy: Isaac, meaning laughter.
I also feel a David-like strength rising up in me, "is there not a cause?" my spirit seems to say. The percentage of babies prenatally diagnosed with Down's syndrome that are aborted in our nation is in the 90s. In Australia I read that it is 98%.
I'm nervous about my own inadequacy. Even though I call myself the amazing supermom, the reality is that I fall way, way short of even my own expectations, let alone other people's. I'm just barely getting by, hoping that if we focus on the majors, the other things will fall in place. (Kind of a 'seek first the Kingdom' sort of thing).
I feel defensive when people want to pray this away. One of the first songs I had in my heart after we got this news was "Don't wish it away." (Elton John - I Guess That's Why They Call it the Blues) (The second was probably, "This thing is eating me alive," from Toby Mac's song Start Somewhere). I believe if God is making us a 47, we would be ridiculous to ask Him to change mid-stream. As ridiculous as to ask Him to change the gender or turn a singleton into twins. Sure He could. But who knows better? Me? no. I have nothing in my heart that wants to pray for God to change what He's doing. If the Creator has spent the last several weeks creating a masterpiece with 3 copies of the 21st chromosome in each and every cell, then that's exactly who I want to give birth to.
My children and I all went to a 40 days for life prayer stand in front of our local neighborhood Planned Parenthood abortion clinic last week. We had our little adopted sweetie with us. I thought about how, years ago, I took my oldest young'ns to do the same thing, and at the time, it felt like a powerful testimony, to stand there with my little ones and pray for women to choose life. Several months ago, we did the same thing with our gang of ten. This time was way more significant, holding a little one whose mama chose life for, and sacrificed so much to give it to her. But the thought of standing in that same place next year with my dozen blessings, and call each one 'beautiful', especially one who most of the world and some of the church would feel ok about terminating, well, I long to do that.
I long to show the world the beauty of the Lord in each of His gifts. Babies with 47 chromosomes are a beautiful gift. I hope people will see our little one and choose life.
But more than that, because that isn't really the focus of our life from day to day, I am excited about me, and my husband, and our other children, learning more about who God is and what He does through this exciting new leg of our journey. I'm saying yes. Yes to whatever You're making. Am I ignorant of what it means to have a child with Down's syndrome? Absolutely. Am I foolish to trust a God I can't see? No chance. He's faithful as the sun. More faithful. He MADE the sun. And He is making a perfect miracle in my uterus.
This post (originally written in late October, 2010) is part of my private Down's Syndrome pregnancy blog. Private until we're ready to tell the world that we are preparing for the possibility of our baby, due in February, arriving with a spare chromosome.
Prior to a few weeks ago, to be really honest, I've mostly ignored this pregnancy. For one thing, I've been very focused on the baby at hand, the one we adopted on September 30th of this year. Also, for the 8th or 9th time out of eleven pregnancies, my placenta is right out in front, so I don't feel the baby move until he/she is bigger than that placenta, which happens around 22 weeks. So he/she hasn't really been on my mind as much as would normally be.
Until recently. A few weeks ago, on Monday, October 18th, we had our "big", routine ultrasound at my ob's office. It was fairly quiet, but nothing alarming. The ultrasonagrapher couldn't get a good view of the face, heart, and, when we asked if everything she could see was looking ok, said the kidneys were enlarged.
Normally, my husband leaves at that point. I go to the waiting room and get called back when the doc is ready to see me. This time (for some unknown reason that I call 'God') the nurse said, "Oh, you can come on back, we have a room open," and even though it meant being late for a meeting at work, he stayed.
Our doctor, with whom we go back 13 years and 9 kids, explained that our baby not only had enlarged kidneys, but also had a femur and humerus that were on the short side, which he said meant we had 1 hard (the femur) and 2 soft markers for Down's syndrome. We could wait a month and have another look, maybe the bones would grow, kidneys shrink, or we could do some more testing, Level 2 u/s, amnio, it was up to us.
Initially, we said we'd wait. It didn't seem to matter. But then the research set in, I made some phone calls, and there were questions, and, well, suspense. We decided there was nothing to lose by going ahead with the Level 2 ultrasound.
Last Thursday, 10/28, going into the level 2 appointment we understood our odds to be 1:11, but that was us working it out over the internet. During the appointment we learned that our femur and humerus were within the range of normal, and our baby's kidneys were still enlarged. She talked to us about needing to have monthly ultrasounds, talking to our pediatrician and letting him know we had a strong possibility of Down's, and said that the baby looked very healthy, with no big organ problems.
Then Brian asked his big question, "Knowing what we know now, what are our odds?" She said, "You're not going to like this, 50/50." She went on to tell us that the nasal bone was not convincingly present, and that she felt they had had a pretty good look.
Later our pediatrician told me that 99% of Caucasian babies without a nasal bone have Downs syndrome.
I have moments of being teary eyed, but the truth of the matter is that God has been making a baby in my tummy for 5 months, and He is either using 46 chromosome cells or 47's. Whichever He is using, I'm going to call what it "good".
Initially, I was overwhelmed at another battle. At dealing with what people will think. We are already on the lunatic fringe. We have given birth to 10 kids, just adopted another of a different race, while pregnant, and now this. Are You joking God? The name we have chosen for a boy: Isaac, meaning laughter.
I also feel a David-like strength rising up in me, "is there not a cause?" my spirit seems to say. The percentage of babies prenatally diagnosed with Down's syndrome that are aborted in our nation is in the 90s. In Australia I read that it is 98%.
I'm nervous about my own inadequacy. Even though I call myself the amazing supermom, the reality is that I fall way, way short of even my own expectations, let alone other people's. I'm just barely getting by, hoping that if we focus on the majors, the other things will fall in place. (Kind of a 'seek first the Kingdom' sort of thing).
I feel defensive when people want to pray this away. One of the first songs I had in my heart after we got this news was "Don't wish it away." (Elton John - I Guess That's Why They Call it the Blues) (The second was probably, "This thing is eating me alive," from Toby Mac's song Start Somewhere). I believe if God is making us a 47, we would be ridiculous to ask Him to change mid-stream. As ridiculous as to ask Him to change the gender or turn a singleton into twins. Sure He could. But who knows better? Me? no. I have nothing in my heart that wants to pray for God to change what He's doing. If the Creator has spent the last several weeks creating a masterpiece with 3 copies of the 21st chromosome in each and every cell, then that's exactly who I want to give birth to.
My children and I all went to a 40 days for life prayer stand in front of our local neighborhood Planned Parenthood abortion clinic last week. We had our little adopted sweetie with us. I thought about how, years ago, I took my oldest young'ns to do the same thing, and at the time, it felt like a powerful testimony, to stand there with my little ones and pray for women to choose life. Several months ago, we did the same thing with our gang of ten. This time was way more significant, holding a little one whose mama chose life for, and sacrificed so much to give it to her. But the thought of standing in that same place next year with my dozen blessings, and call each one 'beautiful', especially one who most of the world and some of the church would feel ok about terminating, well, I long to do that.
I long to show the world the beauty of the Lord in each of His gifts. Babies with 47 chromosomes are a beautiful gift. I hope people will see our little one and choose life.
But more than that, because that isn't really the focus of our life from day to day, I am excited about me, and my husband, and our other children, learning more about who God is and what He does through this exciting new leg of our journey. I'm saying yes. Yes to whatever You're making. Am I ignorant of what it means to have a child with Down's syndrome? Absolutely. Am I foolish to trust a God I can't see? No chance. He's faithful as the sun. More faithful. He MADE the sun. And He is making a perfect miracle in my uterus.
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