Friday, October 1, 2010


Dearest Lily,

A year ago, I was not even aware of October being Down Syndrome Awareness Month.


What a difference a year can make.

I remember learning in September that there was a possibility you could have Down syndrome. I was going in for a level II ultrasound, because of my "advanced maternal age." I had not done the quad marker screening, because of the high rate of false-positives. And the test didn't show anything conclusive just tells women what their odds of having a baby with chromosomal abnormalities would be. 1 in 100 versus 1 in 700...numbers like that.

My odds were already elevated because of being 41. So I decided to have the level II u/s done...just in case there were health problems we needed to know about. Not because markers for ds would change anything we did. We would never consider terminating a baby.


And I've blogged about it here before...but I'll revisit the emotions of that fateful day right now...because it feels good to know how far we've come.


I began these letters to you a year ago yesterday..I wanted a place to come to journal my emotions, which were raging, tumbling, and swirling, like a rushing river heading to a great precipice...I felt a waterfall ahead, a plunge into the unknown, and the rapids were taking me to places I didn't know, and it was all frightening to me.

And so I came here, to find refuge, to pour my heart out to you in the form of letters. I felt more connected to you, I felt the river calm, the torrents that were threatening to drown me somehow still themselves for just a brief pause while I waded through the flood of grief and fear and uncertainty that was trying to take me under.

I wrote these words to you on October 1st, 2009.

Why have I felt all morning like I was going to hear something like this? Why when I was brushing my teeth and looking in the mirror, did I have the thought that tonight when I was brushing my teeth, things would be different? Was God preparing me? Or is it my anxious mind, trying to prepare for the worst, even when there are no indicators that anything is wrong? Why have I been praying for my baby's heart this whole pregnancy? Did God lead me to do that, or did I do that with all my babies, and I'm just more conscious of it now?

How did I know, Lily?

When the ultrasound tech slid the wand over my round, ultrasound- jelly-slathered tummy...and paused too long as she examined your heart...I knew something was different.

Daddy and Mackenzie tried to assure me that I was just being suspicious, overly analytical...

...but I knew.

And I've heard it, read it, on so many blogs, in other books, other often we Mamas are the first to "know". Before anyone tells us.

We sense that something is different with our babies, like the feeling when someone is watching you, and you turn around to see it's true..or the check in your spirit when your children are playing and you just know you should go and check on them, and you prevent some little danger from happening. Or the dream you have that reminds you of something very important, and you wake in the night to pray for someone...and find out later your prayers were indeed merited.

Like a dream of a dream I'm remembering, Lily.


The doctor came in- after what seemed an eternity- and said he would come back in a few minutes to "do the sonogram". I was confused- did he know we just did it? I went in the hallway to ask to use the restroom...I saw my sonographer and asked "Does he know we just did the ultrasound?" She said yes, he just wants to come in and do it himself. More fear in the bathroom...when I went back to the room and laid down on the bed, I was starting to shake a little..Daddy and Kenzie said it was okay, don't be so nervous. The genetic counselor came in and said "So the doctor told you what we saw.." We stared at her blankly...Daddy said no, he hadn't said anything yet...She stared back at us and said "Oh, I thought you knew..." at which point the doctor came in and the counselor said in a flustered voice , "I'm sorry, I thought you had already been in here and told them..." now my legs are shaking and Daddy puts his hand on them and whispers, "Relax". I am trying very hard to be calm, but my dumb legs won't agree.

The doctor tries to make some joke about "advanced maternal age" only having meaning if you're older than your doctor. I ask him if I am older than him, and he laughs and says I'm very kind. He sits down and says "We saw several things that are concerning us, so let's take a look at them" and puts the pictures on the screen. He says let's start with the smaller "problem". He is talking in calm, matter-of-fact tones, but my heart is racing, and I feel like time is standing still.


The doctor shows us the picture of your kidneys, and points out that one is larger than the other. He explains that they are both supposed to be the same size. He explains how kidneys work, and how if this remains this way, it could be a potential problem later on down the line with infection, etc. He says he is not overly concerned with this, as quite often this resolves itself through the pregnancy, and isn't anything to watch anymore.

He says "But let's move on to the bigger concern", and switches the picture to your heart. My heart feels like it is racing faster, and I think for the thousandth time- I hate the feeling of not being in control of my own heart, my own legs...maybe I internalize everything too much, try so hard to stay calm on the outside and talk calmly, and project relaxation- that my body says "FORGET IT!!! You are freaking out, and it's going to come out somewhere!" (Now you know what a neurotic mommy you have:))

The doctor magnifies the picture of your heart and points out the four chambers. He shows how the valves are supposed to function, separating the blood flow on each side of the heart. He explains that the structure of those valves is not looking quite right on the ultrasound. We ask lots of questions, Daddy mostly...Mommy is very quiet, not wanting to ask anything...maybe if I pretend this isn't happening it will all go away? Daddy persists, wanting to know everything- what about the blood flow? Can't you tell if the blood in the heart is flowing right by that other feature the sonographer used? The doctor begins the ultrasound, showing us in "real time", not images, how your heart is functioning, how the valves don't appear to be closing all the way, how they are appearing to form a cross rather than be staggered...He switches the image to show the blood flow pattern- blue on one side, red on the other- but explains that at this stage it is very hard to make out anything definite. He keeps saying "You're going to have to trust me on this"- maybe Daddy is making him feel defensive? He's not trying to- he just wants to know what the doctor sees that is causing him concern.

I finally ask him what is floating around my brain- is this a marker for down syndrome? He blinks and nods his head and says yes, any time there is a heart problem, especially av canal, that is a strong marker. I ask- and the kidneys? He looks me in the eye, nods, and says yes, that is a marker too. I just stare at him, and he stares back and pats my leg and says "I know, it's not easy to hear." ...or something like that.

At this point he starts talking about amnios, and how this would be a very good option for finding out "for sure" what our baby has. But he's not talking about the heart anymore; he's talking about chromosomal abnormalities. He mentions Trisomy 21 (downs) and 13 and 18. Explains very matter-of-factly how 13 and 18 are lethal- a baby with those cannot live..and the amnio can be done at 33-34 weeks...etc.etc..Daddy starts asking questions about amnios and what about doing one now, and the doctor says even though the risk is low- one in a 1,000- that the water bag will rupture and pre-term labor will start- they still like to do an amnio later...because a 26 week old baby -especially with a heart defect- would not do very well being born prematurely. Whereas a 33-34 week old baby has a much better chance.

STOP. Does anybody realize we're discussing MY body here??? I turn to Daddy, and say- maybe a little too vehemently- Do you know what an amnio IS??? He starts to say yes, and I say "They stick a NEEDLE in your stomach to draw out fluid!!" Daddy says he knows, and I say, well I am NOT having that done! Everyone reassures me this is my choice, we're just talking about our options. I tell the doctor- I don't care what my baby is, we are going to love it, and be just fine, and if you're telling me an amnio is just so I can be "prepared"- I don't want one. If you're saying we need to do this for the health of my baby- meaning what is going on with the heart, and how we need to proceed- I'll do it. But not for the sake of "being prepared."

The doctor-kindly- says he disagrees. He says he's been doing this for many, many years, and he's not just looking at the health of the baby, he is looking at everybody's health- mine, Daddy's, big sister's- he looks at Mackenzie- and he has found families do much better when they have time to prepare for a baby with chromosomal defects...find support groups, research, know what to expect, etc. He brings up the Trisomy 13 and 18 again- both lethal- but in the background the genetic counselor is looking at me shaking her head. She says "Your odds for that are still way down here" and holds her hand below her waist. Always odds. This is insane. What in the world do odds mean to me right now???

I ask the doctor- aren't we going to know about 13 or 18 on the next ultrasound? I know from reading stories about these babies, that they do not grow in the womb, and it is very apparent what they have. Whereas downs is harder to pinpoint. The doctor says well, yes- we will know in 3 weeks because the growth would totally fall off. How nice. As if you are a carrot, or tomato, or something other than my precious, unique, living BABY inside of me, everything I've been hoping and praying for since before you were born. But I know that these doctors deal with this kind of thing every day- that's what they do. This doctor sees problems every day- he's the guy people see after a problem is seen on a regular ultrasound. So I try not to see him as the enemy- but right now he feels like it. I know he has to be matter-of-fact because he can't get involved emotionally with every patient. But I don't like his professionalism. And I don't like this quiet, dark room with the magnified picture of your heart on the screen, I want to get out of here where Daddy and I can talk and pray, and think, and talk about baby names, and show people your sweet, beautiful face, that picture that looks so much like your brother and sisters- how could you be anything other than perfect??

When we do get to the car, I start crying- all my emotions and fears come tumbling out, and poor Daddy and Kenzie hear how I am NOT having one of those stupid amnios!!!! And how I would rather have a beautiful baby -maybe with problems-placed in my arms and know that I could never ever love it less than any of my other children- than have a needle stuck in my stomach and risk going into labor, just so for 7 weeks I can "prepare" myself....PREPARE?? Like what? Read stories on the Internet about children I don't know, and won't have that bond with? Join some support group of people I don't know, who don't know me, and talk about what's going to happen, how I'm going to feel, etc? What I could NOT handle is having that amnio done, and going into labor, and knowing I put my baby at risk just so I could know 7 weeks ahead of time what I was facing. No thanks.

We drove home and talked as we drove...Daddy reassuring me that we don't even know yet IF there is anything wrong...Kenzie very quiet in the back. I made several phone calls, decided we didn't want to tell your little brothers and sisters anything until we know for sure. Asked friends for prayer...stared over and over again at your angelic face. Calmed down...

God is going to help me through this journey. Maybe it's a short one, and in 3 weeks we'll find out there was nothing to be concerned about in the first place. Maybe it's a little longer- maybe you'll need surgery and then our lives will go on as before, this just a bump in the road, albeit a big bump. And maybe this is a life-long journey, one that will bring new changes, and challenges, and things we never knew we'd go through...But either way, God is faithful and He knows the road. I know He is going to give me strength for whatever we go through. I feel it already.

Baby, whoever you are, know this. You are loved. You are cherished, and longed for, and prayed for, and treasured, and so so loved. I don't care what you have, how many chromosomes, how many defects, Mommy and Daddy will take care of you and do all that we can to show you how very loved you are.

I will write more tomorrow, sweetie.


And we are on that life-long journey now, dearest Lily.

We plunged over that precipice and into those rapid, swirling, unknown waters, and we're here...

And it feels so good to say, God brought us through.

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you. Isaiah 43:2

It's not the life I envisioned for us, Lily. It's not the road I imagined, the plans I had for my beautiful baby and me.


It's so much better!

Always and forever yours,

Mama oxoxox


Ashley said...

Beautiful, as usual :) I always love your words. I was telling Kenz that yours and her posts always make me happy :)
It's funny because October 1st also marks the anniversary of my dad's motorcycle accident. It's been 4 years today....

Andrea said...

The letter you wrote to Lily last year is just beautiful. I could feel the love you had for her even then - a mother's bond and love. She is beautiful and so lucky to have so much love in her life.

patsy said...

this was so beautiful, that you had such a strong love for her immediately...we did not know until our maggie arrived at 38 weeks about her ds but in the beginning i had several people ask 'did you not do the amnio?' and i said no i did not do any prenatal testing with any of my pregnancies because it would not have changed a thing. and when they would ask did you not want to be prepared i reply no we would not change a thing. we think miss maggie and HE were protecting us from spending the last few weeks of my pregnancy filled with worry because when i held our sweet girl and nursed her for the first time i felt such a sense of calm come over me like her soulful eyes were telling me everything was going to be ok...ans as i know you know it is better than ok, i feel so blessed to be going on this journey. and you go lily :0) already sitting up like such a big girl!!

TheFoleyFive said...

augh. i cry nearly everytime i read your letters to the lilybug. What an incredible writer you are, and what an amazing mother.
love you guys!!
soph (and john)

CKopp said...

...I cry too. But I think its from the eye strain..

brevity \ˈbre-və-tē\: shortness of duration; shortness or conciseness of expression.

Love ya sis!

Lori said...

It is amazing how much joy one baby can bring - what was life like without Lily - I have a hard time picturing your family without her - it seems like we have always had Lily - and I don't even live in the same state as you - but - I am so happy that Elli has a best friend from birth! We so love that little girl and miss her so much!! Love the pictures - kiss those 3 monkeys for me!

JC said...

I had an ultrasound at about 30 weeks just to check things...the Dr. told me everything looked great but that a kidney was measuring at the higher end of the normal range...I burst into tears...I knew...He told me it was nothing to worry about, everyone in my family told me it was nothing to worry about...but I knew...I always felt something was different.
Anyway, this was beautiful, thank you for sharing it :)

Mrs. K said...

Oh Patti, those pictures are some of the best. So precious, so tender, so innocent, so sweet. They truly match your precious, so tender, so innocent, so sweet. Once more you have wrapped a ribbon around my heart and have pulled tight.

Kelly Marin said...

You are so blessed! what beautiful smiling happy faces:)

Virginia Revoir said...

Wow... thank you so much for sharing this. :) She is so blessed to have you for a mommy.